My fight against Non Hodgkin's Lymphoma

New Website

2008-03-24T15:26:00.000-07:00

My new blog all the time now can be found at:

http://www.caringbridge.org/visit/melsfightnhl

So any updates now go on there.

Mel xx

Cant be bothered

2008-03-08T14:04:00.000-08:00

Just to let you know we went to clinic on Wednesday and saw Dr. Haynes. The news is positive. The xray i had last week shows a reduction in the tumour and my chest is definteley better than it was before the transplant. Its held it for 3 weeks so far which is the longest its ever held for and all the signs are positive. We are on target to get to the bone marrow transplant, if it can continue to hold it. I will have a PET scan within the next week or so to confirm all this and alot depends on that. They have 2 potential donors and once the PEt scan comes back, if the results are good from that then they will start to look at planning the donor transplant. It is good news but it also does not mean everything is all ok and i'm deffo gonna get the BMT. It means we are on target and so far everything is going to plan which is great but we need to take everything in perspective and in context. The PET scan results are essentially what is important but so far so good! I don't have any more chemo now, its a case of this last lot ive had holding it for as long as possible, until i'm ready for the BMT essentially.So yeh thats the news. So far so good!!

I'm not really updating at the minute cos to be quite frank i dont have the energy or motivation. I am slowly improving but its really slow and my energy levels and interest levels are pretty low right now. Having visitors really tires me out and sometimes its hard when they are here to make conversation so i apologise if you've been and i've not talked much. I went to birmingham on Friday and it was good but it was also very hard, a year ago i was involved in the elections, this year i found it a struggle to stand for a 5 minute game of pool.

Nothing really seems real to me at the minute, i feel like im living my life from the outside. I feel i should be interested in more but i'm not. I can sit and stare at the TV for an hour or without taking in anything thats on it but there's nothing else to do. Moving from the sofa is an effort, getting up is an effort, having a wash is an effort. Writing this is an effort.

And yeh we've had good news but its all got to be in context, this time next week my symptoms could be back though obv we try not to think like that. we are realistic in the fact that it could happen.

Also my side effects are still here, my aching legs arent going away, i can't taste food, my mouth is sooooo dry its untrue. Its really really hard and its gonna take months to recover. then should i recover i have to rewind 12 weeks and do it all again with the bone marrow transplant. an even more complex and dangerous procudure that involves the same side effects but probably worse. but then if i dont get to that stage it means the sct didnt work and we move to pallitive care which obv we dont want so im in a no win situation really. well i guess the bmt is the win situation but when ur going thru it it bloody well wont be.

i dont really know what else to say, except yeh im fed up! if u cant tell. i wish i felt more inclinced to do stuff but i really don't. i'm sick of being ill, im sick of having cancer, im sick of telling people how i feel and just cos im not smiling and happy im not ok, i probably am in terms of me being ok but me being ok isnt a normal persons being ok. I feel fat and bloated, i feel weak and tired and not like me. i dont feel like me anymore and thats what i cant stand. im sick of being ill. i dont like being bald anymore, i hate the fact that i have to force myself to want visitors, cos i know i should have them, i'm just not very chatty when they come and then i feel bad cos i feel like i should have made an effort.

and so yeh thats my rant for today. sorry its so negative but i just cant be arsed to gloss over the reality. This is shit. recovery is slow and im fed up.

i guess i should be grateful we got good news....its just sometimes its as hard to take that as the bad news.

mel xx

ps - i apologise for the spelling and grammar in this blog but i wrote it in blogspot n u cant spellcheck etc n im being lazy when i type.

Tired!

2008-03-04T12:55:00.001-08:00

This will be quite short tonight cos I am soooo tired! I actually feel ok but I've had two visitors today and I think its taken it out of me a bit. My aching leg pain is still here and very painful, i got some stronger painkillers but I'm not convinced they are working! But I am in clinic tomorrow so we'll ask about it again then.

Other than that I feel ok, I feel quite interested in things and apart from being absolutley shattered tonight I would write more!! I'll try and update tomorrow anyway cos we're in clinic though I don't think we'll find out too much info anyway.

Sorry its so short!

Mel xx

Hospital again but not for long!

2008-03-02T14:09:00.000-08:00

Well I planned to have a nice relaxing day today with no stress and a nice turkey dinner and some football but as usual things didn't quite go to plan.

I woke up this morning with what I thought was a mild aching leg, however within a few hours it was excrutiating pain and I was screaming in agony. It felt like someone had twisted my entire knee around. It was in both legs but the right one was far far worse. Anyway we rang the hospital and they said to get over there so they could check it out. We did so, driving at over 100mph down the motorway with me screaming in agony. We were seen more or less straight away by the doctor and immediatley were reassured. Apparently because I haven't used my legs for so long and now am starting to again it was muscular related, it was just spasms letting me know basically that I am starting to use my muscles again and the reason my right leg was worse is becasue that is my dominant side, like when I go up the stairs thats the leg I put weight on first. I was told told to take codeine and paracetomal regularly to keep it at bay. That has worked most of the day although I can feel it at the moment. It was more scary not knowing what it was, we were thinking it could be a blood clot, something to do with my line or anything!! But it was reassuring hearing from the doctors it was nothing serious. So within an hour we were driving home, this time, me not screaming in agony!

We did get our turkey dinner, just much later than expected! Other than that my nan and aunty visited as did my friends from school which was nice and I did get to see the football so that was all ok!

Apart from that I feel ok, bit stronger though my legs are a bit weak today after the pain! I'm still incredibly weak but I am improving. I am also pretty tired but I think thats cos of the drama of the morning! I hope you all took note of the fundraising issues I raised yesterday, I won't repeat the links but they are at the side of the page should you wish to access them.

The other thing I ask you to join is the facebook group that I will put the link up too - if you are indeed on facebook - which highlights the lack of financial support students with cancer recieve. If you read my dads blog you will understand our issues regarding finaincial support. Basically becasue I am still officially a student event though I am on leave of absense I don't qualify for any benefits and therefore had no income. I didn't take out my loan as I'm not studying and a loan is to support your education, plus why should I become another £3000-4000 in debt while I am recovering from a serious illness??!!! We applied for income support and were rejected, we then appealed and were rejected again on the grounds that 'I am a student.' I didn't qualify for incapacity benefit until 6 months after being diagnosed so I will only start recieving that this month. We applied for Disabled Living Allowance and were granted that but again only started recieveing it this month. The only reason I qualify for that is because of the nature of my symptoms, the fact that I need help to have a wash and I need a wheelchair. Other students woulnd't neccesarily qualify for this, if they had cancer and had no breathing problems or didn't need as much care they would not qualify and so would recive nothing at all! I am a 20 year old adult so technically could be living alone without my parents, how would I have survived? I have been totally reliant on my parents for money, I haven't had anything. We have contacted our local MP who conatced a minister in London whose advice was to take out my loan to live on. Again ridiculous advice. He has since refused to meet with my dad to discuss the issue but will only meet with our local MP. It has been an absolute Joke.

The link to the facebook group to join is as follows: It was set up by a guy in a similar position whose univeristy refused to refund his fees when he was diagnosed with cancer but the principles involved are the same.

http://aston.facebook.com/group.php?gid=5058544181

But really all you need to do is sign this petition - if you go to this page and sign this petition it would really really help:

http://petitions.pm.gov.uk/ProtectStudents/

Thats it for today!

Thanks for reading.

Mel xx

Feeling a lil Better.. and FUNDRAISING!

2008-03-01T11:45:00.000-08:00

To start off today I want to point your attention to some fundraising information.

We are trying to raise money for a few charities and we would appreciate any donations you can give. Its really easy and safe to donate, all you have to do is click on the links given below and put in your card details. Its a totally secure website. The links are also available through my facebook page and group if you need them.

My aunty Karen is walking the Great Wall of China in October 2008 and all the sponsorship money is being raised for charities on my behalf.

The first is the Lymphoma Association. They have given me alot of support in terms of information, emotional support and the chatroom they offer which means i can talk to people going through similar issues.The link to donate to this chairty is as follows:

http://www.justgiving.com/melsfight

The second chairty is Nottinham University Hospitals NHS trust. This is where i recieve all my treatment and alot of research in bone marrow transplants and stem cell transplants takes place here, the treatment I have had or will/could need. The hospital have been fantastic in everyway and its our way of thanking them.

http://www.justgiving.com/melsfight2

If you are unsure which one to donate to please just split your money between both. Please donate, even if only a few pounds as it is for a worthwhile cause!!

The other thing that we are doing is my cousin Sarah is doing Race for Life in June 2008 and to donate to her cause its exactly the same, just follow the link below and enter your card details. The link is as follows:

http://www.raceforlifesponsorme.org/sarahpowell3

So please donate to one or the other or all if you can!! Please!!

It really is worthwhile and I urge everyone to please try and donate something even if it is only a few pounds to each! I have also sent posters to Uni to advertise the cause so I hope people see them around!

If anyone wishes to add the JustGiving Application on Facebook to support the fundraising it's real easy to do. Just add the application (if you search applications just type 'justgiving' and it comes up straight away) and in the link bit put 'melsfight' for one and then to add the second page put 'melsfight2' and you'll get a box on your profile page where people can just click donate and it will take them to the page where you can donate. It would help raise awareness if you could and its only a small application. If you look at my facebook page you'll see it. It's also on my sisters, my mums and my dads page. Becky, Ian and Julie Leech.

Thanks again if you do donate.

**********************************************************

Now onto my blog. Yesterday was really negative I know. But it was how I felt so I make no apologies. I do feel better today, I’ve done more and I’ve had visitors which was nice and I really appreciate them all coming. It does tire me out but I appreciate it all the same! I like listening to people just sitting and talking about normal things, even if I'm not chatting away, its nice hearing normal conversation! I still find it an effort to do things, like moving lol, but it is improving gradually each day. I didn’t sleep too well last night and I felt sick in the night which wasn’t nice but it did pass.

I woke quite early this morning craving food and I had breakfast pretty early! The district nurse popped round to see how I was and it was nice to see her. I’ve watched some football and it was a shit game so I can’t say I was too interested in it but then I don’t think most people would have been to be honest! City - Wigan and it was 0-0 so don't blame me if I wasn't glued to the screen! Good result for Villa today but we could have done with them losing really!! And Burton lost, they seem to be having a bad spell right when they least need it! I’m going to try and stay awake for Match of the Day but we’ll see!

I spoke to Becky on the phone which I haven’t done for like a week or so,so that was an achievement.

My plans for my Willows Foundation party are in full swing and the provisional date is the 12th April though we will get confirmation of that on Monday and as soon as that is done I will set up a facebook event to officially invite people. Obviously I am limited in terms of numbers so please understand if you don’t get an invite but many of you will so don’t worry! The plan is still to have a casino themed afternoon with a karaoke evening hosted by Mark and Luke from Aston(!) with a buffet in the middle. I will have a meal for family before that.

The dress code will be smart casual, no trackies but jeans and a shirt are fine. Travel costs will be your only expense and the evening will end about 7-8 so it shouldn't be too late to either travel home or find somewhere in brum to crash. I would offer people a place to sleep but we have like no room! There will be a bar but the idea of the day isn't to get drunk, its about me being able to socialise with my friends and have a kind of normal day for once! It's going to be held in Burton at Burton Albion's football ground and its a saturday so you won't have to rush back for work the next day. I hope as many of you as possible can come. As I say a facebook event will be created on Monday as soon as we get confirmation of the dates!

Tomorrow Liverpool are on in the morning and Everton in the afternoon so I should have something to interest me and also Leanne and Kirsty are coming in the evening and my aunty in the afternoon so there will be something to break the day up. Plus I’m having a turkey dinner so that’s always good! I’ll be craving it all night!!

In terms of treatment, the chemo has obviously done something as I can breathe much better and lie down flat at night, something I haven't done for a long time. However it's how long this lasts for that we don't know. Obvisouly it needs to last 3 months to get to a chance of a Bone Marrow Transplant but we have no idea if it will. We are in clinic on Wednesday to see Doctor Haynes and I think he will tell us when he plans to scan me next. Usually they wait 3 months but they will do it much sooner with me, probably in a few weeks time. I also have to have my bloods checked which I hope will be better than last week as my line hasn't been bleeding so they've been taking it from my veins which are really battered and bruised now! and sore!! So until Wednesday I won't know too much more in terms of plans from now on. At the moment its just a waiting game. Building up my strength and trying to get some normality back in my life for however long!

I think that’s about it really, there’s not too much else to say! Each day is a step forward I guess and today has been a good day. I just hope tomorrow is the same, or even better!

Thanks for reading!!

And please remember the fundraising!

Mel xxx

Unprepared

2008-02-29T10:56:00.000-08:00

Theres not too much to say really today. It’s been pretty uneventful. I feel the same, low, crappy and disinterested in everything. I just wanna feel normal again, I don’t want to be worrying about getting up the stairs to go the toilet. I want to be able to sleep properly at night and not think about in the morning having a wash is such a huge effort. I want to be able to do something that interests me in the daytime. I went out in the car today but that was an effort and I slept when I got back. I was totally unprepared for all of this transplant malakry. It was sprung on me so quick, I knew I’d feel ill but not as ill as I have done.

I want to be able to have the energy to talk to people but I just don’t. I have a vague interest in football but even that is limited. My taste is so buggered, everything has to be piping hot and flavoured up for me. I want visitors but I hope you don’t expect too much from me, I just don’t have the energy to be all chatty and talkative at the moment.

I cried this afternoon, I just don’t see an end to all this and that’s hard for me at the moment, I want to be able to do stuff but I just don’t have the motivation. Its like in the day, what do you do? There’s only so much time you can spend on facebook, I cant concentrate on books properly and dvds just don’t interest me. Everything I had had has been taken away and sometimes I just want it all to be over. I don’t know how much more I can deal with. At the moment I cant even contemplate having a bone marrow transplant, I don’t know if I could put myself through it for the minimal odds of it even working. But maybe my attitude will change with time I don’t know. I feel like I just wanna sleep all the time because then I don’t have to think about things and I can relax but if I sleep too much in the day I worry I wont sleep at night. It’s a vicious circle.

To be honest I cant say anything else, theres noone that can understand how I’m feeling right now to be honest and as much as I try and explain things that’s not going to change. I just wish I felt more positive. Its just a waiting game now and I cant tell if the chemo has worked, all I know is my breathing is improved, which is great sign yeh but for how long? Its anyones guess.

I guess I just have to try and believe it will get better, well it has too cos it cant get much worse.

Mel xx

Weak

2008-02-28T13:42:00.000-08:00

Well I haven’t updated for a while because I’ve just been way too tired and disinterested in everything. I still am. I’m home now but am still very very weak and tired. Yet I don’t sleep well at night. I don’t have any motivation to do anything and typing this is an effort in itself. I am up for visitors now but bear in mind if you come I’m not gonna be all chatty and talkative, I’m very very weak and barely have the energy to get out of bed in the morning. Having a wash is huge effort and getting upstairs is extremely difficult.

I have an appetite but I can’t taste much as my taste is all buggered up. The food has to have a lot of flavour for me to even begin to taste it. I feel pretty low emotionally, I just have no interest in anything and talking to people is an effort at times. I feel a little stronger each day but it’s a very slow process.

Unless you have been through this treatment you can’t even begin to imagine how it makes you feel. My legs are so weak, just pulling myself up from the sofa to get to the dinner table is an effort. Its gonna take me a long time to recover from this and I mean psychologically as well as physically.

To be honest there’s not much else I can say. This blog will be updated as much as I can but I don’t always feel like doing it at the min. I guess in time I will update more.

Thanks for all your messages of support and I do read them all, even if I don’t reply.

Thanks again

Mel xx

Back to this Blog

2008-02-25T11:06:00.000-08:00

I may update later properly but now we are back to this blog permanantly, the other one wont be used anymore so this is back to where we are.

Mel xx

Unfair

2008-02-25T11:03:00.000-08:00

I’m feeling pretty shitty if I’m honest. Physically I’m improving but emotionally im finding this very hard right now. Mum and dad r both too ill to visit again and I need them so much to be here, I just wanna cry all the time and I just don’t know how im supposed to be coping to be honest. My aunty and friend are visiting and that has helped but there’s nothing quite like having your mum and dad around supporting you.

My counts are on the up and they say I should be allowed home by the middle of next week which is great I know but I just cant even seem to see that far ahead right now. I just feel so depressed and I don’t know how to get myself out of it. I feel so weak and energyless its untrue and my swallowing is so painful at times. The diorrea is pretty much gone, not wanting to jinx anything and the side effects are easing but it’s a slow process. I wasn’t prepared for how shitty this whole thing makes you feel I swear. I don’t think you can be. Its sooo sooo hard, the hardest thing ive ever done in my life and like I said…its made me consider my options with regards to a bone marrow transplant….its just so hard when you know that it’s a slim chance of a cure as well.

To be honest theres not much else I can say so im gonna leave it there. Im so mad at the world right now that everyone is ill when I need them…I know they want to be here but its so frustrating – why aren’t we ever due some luck???? Its NOT FAIR!!!!!!!!!!!!! I WANT TO SCREAMMMMMMMMMM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! WHY ME????? WHY DID I HAVE TO GET STUPID FUCKIN CANCER!!!!!!!! I WAS FINE!!!!!!!!!!!!!!! I WAS ENJOYING UNI AND NOW THIS!!!!!!!!!!!!!!!!!!! NOW I MIGHT NEVER GO BK AND ITS NOT FAIR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I’m sorry I had to rant.
Mel x

Back Again

2008-02-25T11:01:00.000-08:00

This shouldn’t be too long but then again it is me and we know how I like to ramble on! Lol, I thought I would give you guys some sort of update on here. The last 4 or 5 days have been probably the worst of my life if I’m honest. I don’t remember too much about them, I’ve been pretty spaced out most of the time, I don’t really even remember my aunty visiting on Sunday morning, sorry Karen!

I’ve been asleep for most of the days, too weak to move really from the bed, I haven’t wanted to talk to anyone, my mouth has been so dry I haven’t eaten anything properly, I had/have a bad pain when I swallow which is still bothering me but I have been told will ease. I also had really bad diorrea but that, touch wood, seems to have slowed down now with some new medicine but for a while it was bad! Unless you have ever had this high dose chemo stuff you can’t begin to imagine rough it makes you feel, bad man-flu – not a patch, it’s awful, I can’t put into words how ill its made me. How it still is making me cos I’m by no means better as I write this. Yes I am now capable of speech and staying alert for longer periods of time but I am still hooked up to fluids 24/7, can’t swallow tablets really and am very very weak but I am showing small signs of improvement.

My hair is coming out again, like it had grown back but I’ll be bald again by tomorrow or Friday I should think. Not that its an issue anymore anyway! I’m sorry for the blunt way I put across about texts the other day, its just that I was getting about 5 or 6 a day saying ‘How r u feeling today’ and I didn’t have the strength to reply and the point of these blogs and facebook groups is for you to find that out! And also we don’t know if the chemo is working yet, without scans its impossible to tell, yes there is more air moving in my lungs which we take as a positive sign but we don’t know anything and we won’t until I have a scan in a few weeks. Even then, it will probably have caused some kind of response but it’s a case of waiting, if my symptoms come back in 4 weeks, it’s worked for 4 weeks, if they come back in 3 months it’s worked for 3 months….it really is a waiting game with no clear answers.

Other than that I’ve felt very low emotionally and it really has made me wonder if I would undergo a bone marrow transplant for the small chance of cure it could offer me, its a lot to put my body through. I mean you think I’ve put myself through this in the realistic frame of mind I’ll get 2-3 weeks, potentially a bit more of feeling ok. Not a lot really is it?

A bone marrow transplant, yeah offers me a chance of a cure but that chance is still only 25-30% which isn’t a lot so I’d be putting myself at a very big risk for a 20-30% chance of cure. I know you probably think it’s selfish but part of me would just want them to control it at that stage and give me as long as possible with the best quality of life. I don’t wanna spend the rest of my life in and out of hospital feeling like shit! But this is a long way off and I’d be asking lots of questions before I took a final decision. Besides chances of us getting this far is minimal anyway! The risk of GvHD (See glossary if you don’t know about it) is also a risk factor, having donor bone marrow is a risk in itself, the risk to your organs, its not exactly a straight forward treatment!!!

My Willows foundation day is taking shape nicely now and soon I will reveal all the details and dates. It’s basically going to be a big party but during the day not the night, for all my friends and family. Me and my family will have a sit down meal before all my friends arrive in the afternoon for a casino theme afternoon with poker and casino tables and then we’ll with karaoke in the early evening. There will be food in the afternoon as well. It will be held in Burton at Burton Albion’s ground as they have a big facility there that we can use. The only thing you would need to pay for would be travel costs of getting to Burton but its cheap from Brum (less than a £5 return) and for those of you travelling from that bit further then there may be a way the foundation are able to fund some of your expenses. It really would be appreciated if you could come if you can as it the one day I really want to enjoy everyone being together. It’s not about coming and getting drunk though I’m sure there will be some alcohol available, that’s not what it’s about. Obviously I can only invite a certain number of people but I will be letting them know in the next week or so who they are. There is a fair few of you don’t worry but obviously I’m limited in terms of space and capacity plus I have family and friends from both Burton and Uni!!!

Also my aunty is doing the trek of the Great Wall of China and all the money is going to The Lymphoma Association and Nottingham Hospital.

If you wish to donate the websites are as follows:

www.justgiving.com/MelsFight is for the Lymphoma Association.

www.justgiving.com/MelsFight2 is for the hospital.

The Lymphoma Association has helped me loads in terms of putting me in contact with fellow sufferers and has provided so much information and obviously the hospital one is where I am being treated.

Also my cousin Sarah is doing Race for life in June and so if you want to sponsor her please feel free, this is for cancer research uk but she hasn’t given me a link yet to a fundraising page but when she does I’ll put it up.

I think that’s about it for now really, it was nice to see dad tonight briefly and hopefully in the next day or so he’ll be back properly. I’m still not up for any other visitors but will let you know when I am.

Thanks guys
Mel xx

Weak - 2am update inc

2008-02-25T10:59:00.000-08:00

I feel so weak and crappy, i dont know how i am amanging to write. Stop sending me message saying 'how r u today?' i cant answer and most of the time i feel like shit. Its what Facebook and this blog is for. I'm not saying dont text me but text me normal stuff or i' hope ur feeling better' - just dont ask! please.
Thats it for today cos i feel sooo weak

Mel xx

Its now 245 am and im awake but slolwy drifting off. they give me this anti cikness drug that makes me high and then kncocks me out. Sorry to be so blunt earlier but when iget about 5 days a day sayin 'How r feeling today' i can't answer!! i feel toomuch like shit, if you wana know read this and facebook. Its why they are here. by all means wish me well and text me but please no silly questions. u can ask how i am in a facebook message everynow and again but not all the time. My dry mouth is my issue at the min as well as the diorrea which isnt really easing. i can barely eat or drink its just so dry.

Dr. Haynes came into and said everything was normal, my breaathing was better, counts have dropped faster than i thought though and i'm due 2 bags of blood tomorow. Alll my drugs are given throuhg my line and my drip as i cant swallow tablets at the min.
the drive for the xray dept was fun tnoihgt - they wanted to chekcn nothing wrong with my abdomen cos its been hurting alotMum cam 2day with becky and that was good. im leaving it here xxxxxx

Ice Lollies

2008-02-25T10:58:00.000-08:00

Well I feel a bit better today, I’ve barely been on oxygen and my breathing feels a lot better than it did yetsreday, the doctor thinks its cos the fluids have slowed down! Thank goodness!! Though I don’t wanna jinx anything so keep your fingers crossed I carry on feeling this way! No sickness since Monday night again but I don’t wanna jinx anything cos it took a few days last time to kick in so maybe this is the calm before the storm! No sore mouth yet either but I’m addicted to ice lollies so maybe they are helping!

I had to suck on them while they gave me one of the chemo drugs and ever since I’ve had this weird craving, I can’t stop eating them at all!!! And I’m getting cravings for like fruit, I just had an apple and if you know me then you’ll know that is weird!!! I’m getting some starburst sweets tomorrow and more lollies and orange squash – my appetite is sooo weird right now!!

I actually forgot to say yesterday cos I felt so crap that I had my stem cells back in, it went fine genereally, the nurse stays with you the whole time and it takes about an hour, its like having a blood transfusion except quicker! And they monitor your obs like every 5 mins. I went a bit hot and a bit breathless and the doctor came in to check me over but I was ok in the end and they were able to carry on. I didn’t taste the weird taste in my mouth though my mouth did feel a bit weird like I couldn’t swallow properly. But generally it was uneventful and now it’s a case of waiting for them to work! It can take 10 days for my counts to rise so its gonna be a rough ride for a week or so in terms of feeling washed out and also I’m really prone to infection now.

I got a lovely surprise at 6pm this evening when not only did I have my clexane injection as normal which did bloody hurt today!! They also gave me my GCSF injections – apparently I’m starting them again now to raise my counts! Fun stuff – so 2 injections to look forward to each day though at least GCSF aren’t as bad though the side effects of aching can be, but being in here I’ll be allowed some good strong pain relief so I’m not too worried.

I feel ok in myself today, I spoke to mum about stuff I wrote last night and I also rang the Lymphoma association for a chat which was useful and tomorrow a psychologist is coming to see me so I think that will help a lot. Alison, the stem cell nurse came to see me today to see how I was which was really nice and again all the nurses up here have been great in looking after me.

The downside at the min is that everyone is ill, both mum and dad can’t visit now so I’m a bit of a loner. It’s frustrating and upsetting but it can’t be helped and with me being at my most prone to infection at the min it just isn’t worth the risk of them coming. I’ll cope and we’ll get through it and it’s only one day because Becky can come all day Friday and spend the day here. Nan is bringing some stuff in the morning and sooty is coming in the afternoon to keep me company otherwise I think I might just go crazy sat here on my own all day!! So I really appreciate that!
I’m still suffering badly with the runs (sorry again) but they said as soon as they know its not an infection they can give me something to help it so I’m gonna keep pestering!!!

Right on that note I think I shall go……..night night xxx

Feelin Low

2008-02-25T10:56:00.000-08:00

I’m feeling pretty low right now, I don’t know how much I can really say. I miss my mum and dad soo much here and I just want them to be better so they can come see me. I’m praying mum is ok for tomorrow, I know dad wont be but I need someone. Sooty came today and bought me rose and its one of the nicest things anyone’s ever given me, esp on valentines day so I much appreciated it.

I also saw the psychologist which did help and she showed me some relaxation techniques to help me sleep as I didn’t sleep at all well last night. They have also given me a different sleeping pill called zopiclone which I have had before and worked well so I’m hoping that helps as well. I just can’t get comfy, I asked for paracetomol to see if it helps as well. My back is just so uncomfortable, not the pain had before, just cos I’m sitting all day I think.

They have discovered there are no bugs in the diorrea issues so they have finally given me something to help plus aload of fluids which I’ve been connected to all bloody day! They should finish sometime in the morning so I may well be free of the drip though I’m sure they’ll connect me to something! Antibiotics most likely. My stomach feels a bit queasy today too and I’m finding it really hard to eat or drink anything. Taking tablets is such a mission, especially in a morning when I have what seems like a million.

I had both my injections which weren’t too bad tonight and generally it’s been an uneventful day, a long day but made easier by Sooty’s visit. I just feel like I want to cry all the time at the min, maybe I should, it might help, I think its just hitting me now. It was much easier to be positive at first, esp when I felt psychically okish but now I feel weak and psychically in discomfort its much harder. And the days are so long now, they used to go quick but now they don’t! I just have to keep thinking that there is an end and I will get home eventually! Gosh I cant wait to step into my house! And into ‘my’ bed and have proper cooking again…………
Anyway that’s all for tonight
Mel xxx

Feelin Crap

2008-02-25T10:55:00.000-08:00

Well I couldn’t update yesterday because I felt so shit. Today hasn’t been great but I have some energy so I thought I would keep everyone updated. I feel like shite if I’m honest! Monday night was relentless sickness and the chemo is really kicking in now and unless u’ve ever had this stuff u cant imagine how bad it makes u feel. No matter how ill you’ve felt with a cold or flu it is nothing like how I feel believe me! I also have excessively bad diarrhea (sorry!) which is apparently due to chemo and is because it’s affected all my gut. This is due to carry on I have been warned.

I feel pretty tired and weak and am gutted cos everyone seems to be getting ill and can’t visit. By that I mean mum and dad which are the two people I need right now! I just pray at least one of them is ok to come tomorrow. I don’t think I can cope on my own right now! I just hope everyone gets better. I’m not up for any other visitors at the min except mum, dad and Becky so although I appreciate the offers its best to stay away as I feel so bad one minute and yet okish the next. I’m feeling low I’ll be honest, this is harder than I thought and I feel so crappy! I just keep trying to think ‘get through the next 10 days and you’ll start to feel better’ but it’s hard to keep thinking that when you feel so shite. It’s starting to get to me that yeh I might never get better and I probably won’t ever return to uni or do a lot of things I wanted to do. I won’t ever have children and the likelihood is this cancer will beat me eventually. However long I get I don’t know. How horrible is that to have to say and I’m sorry if that upsets everyone. It upsets me but it’s realistic. I’m not giving up hope, far from it but it is starting to affect me emotionally now that a Bone Marrow Transplant is unlikely and I don’t think I’ll get that far. It’s getting harder to deal with and I’m gonna keep going, course I am but it is hard.

Gosh it’s a battle with tablets today, my appetite has taken a dip since the sickness and I’m not eating much really. Taking tablets is soo hard. Right I have nothing else left to say really so good night. Again, too tired to update about Willows stuff and fundraising but will get round to it eventually. xxx

Chemo Tired kicks in

2008-02-25T10:54:00.000-08:00

It has just taken me like an hour to motivate myself to move the table to go on the computer! I keep falling asleep but I really wanna update first. ‘Chemo Tired’ is kicking in now, I can tell the difference from a normal tiredness. I guess after 4 days of the stuff it was bound to happen plus my stupid sleeping patterns cos of steroids! So I am gonna try and have an earlyish night for me. That’s means pre 2am!

Sophie, Nick and Chris came today which was really good so thanks sooo much guys for coming, I really do appreciate the visits from people! And well done to Soph who won the Connect 4 battle! Sadly my dad is ill and cant come in at the moment which is sad but like we said we just can’t risk it due to the nature of the ward and the disease. But hopefully the cold will be short lived and he’ll be back soon enough!! It was also good to see Becky again and she’ll back on Thursday.

My voice feels a bit weird today a bit husky, it’s a sign the tumour is pressing on something, we’ve been warned about it before. I can also feel sensations in my chest, weird as that sounds but I have no idea if this is a good or bad thing!! Today is the first day I’ve felt ill really in terms of chemo ill I think, I just feel a bit more groggy and tired. Nothing major, just little signs really. And slightly nauseas which isn’t good. I have just had anti sickness though so I’m praying it takes it off.

Chemo starts again tomorrow, fluids followed by the chemo followed by more fluids. This is the one that is gonna make me feel ill I guess so if I don’t update or text you back you know why! Also being connected to chemo just to let you know is no big deal, I dunno what some people expect! Its literally just connected to my drip and goes through my line, I don’t feel it at all and I can walk around with the drip attached me. The bad bit is when your disconnected and the side effects kick in!!!
I actually shed a tear tonight, not many, just a few, I dunno why they came, they just arrived and then left as quickly as they had arrived. I have no idea where they came from.
I was gonna update about my willows things and also about fundraising but I am far too tired so I will do that another time. For now this is it.
Night night xxx

Drugs on Demand - some people's idea of heaven!

2008-02-25T10:51:00.000-08:00

The day started with the usual obs and bloods though my blue line decided not to bleed so the red one was used instead. No big deal though, think it was a positional thing. I have to say having the male nurses access my line now is a little more embarrassing cos of where it is! Lol, I much prefer the female ones doing it. Though that sounds bad now! The nurse ‘Mini Kas’ who reminds me of my old nurse Kas from downstairs came in to do my obs and I think wondered again if I’d actually slept at all! I had! But not much. That pic is of me connected to the chemo one day last week.

I had no chemo today cos its my rest day, think I start fluids tomorrow and then last bit of chemo on Monday. Had my stitch taken out of my line this morning which was fine, no pain or anything, just a tad sore afterwards just cos of where it is. We had to hold down the clear dressing on the line while we pulled at the one on the stitch – it was a 2 person job! Lol, I have some nice bruising around the line but nothing major and it looks a hell of a lot neater than the old one used too. I think it freaked Becky out good and proper though!

Symptoms are still all the same, no change, got a very dry mouth as a result of chemo which I always get but no sores so far which is good. I am on oxygen pretty regular now, without it my sats levels (oxygen levels) drop to about 93 or lower, with it I can get about 96, occasionally 97, on average a 95. A normal person is 100 or 99. Also had a touch of the ‘runs’ which I’m sure you want to know about but seeing as dad put it on his blog there are no secrets! Lol, it’s a common side effect anyhow and they are helping me with it you’ll be pleased to know! I also keep getting like hot flushes and have to have the fan on a lot! Dunno why though. My clexane injection was random today, she came in, went to hand it to me to do it and I was like ‘no you have to do it’ (she was a nurse we hadn’t had before!) and then she did it really really fast, apologised for having to do it, left and I went really hot and almost in shock it was done so quick and then it stung like hell!!!!

I think I am going to ask Dr. Haynes if I can see a copy of my scan, just out of curiosity, I wanna see what this here thing looks like!!! I should see him Monday or Tues so I’ll ask then.
Becky has been here all day which has been nice and I slept in and out all afternoon while half listening to football on the new radio which is really ace actually! I always feel a bit guilty though cos when people are here visiting I feel I should be making the effort and talking but sometimes I just cant help but shut my eyes and let the sleep wash over me.

Sometimes it makes me sadder when Becky is here, that’s not meant in a horrible way and I don’t mean when she’s actually here during the day in hospital, that part I love, I really do but when everyone leaves at night its harder when Becky leaves with them cos its like the full family and they all go and I stay. And I’m ok on my own here but it’s harder saying bye watching everyone go together. I guess when it’s just mum and dad it’s a little easier cos I know it’s not quite normal at home anyway but with Becky, if I was there we’d have a full house and it’d be different. I Just imagine it more different and when everyone goes together it’s sadder to be left alone afterwards - though I’m ok like, I don’t suddenly collapse into a ball of tears or owt!! I dunno if that made any sense!! My TV was frickin annoying tonight, the signal on it is a bit dodgy and the sound was so crackly! I watched casualty ironically lol, then fell asleep for an hour and then woke up and watched match of the day.

I had some half decent meals today, a chicken in a white creamy sauce and then for tea, sausage, chips and beans although the sausage left a lot to be desired. I have a beef dinner tomorrow though which I know is pretty good cos I’ve had it for the last 2 weeks running! I also have cravings for chocolate mini muffins now – thanks to Debbie! Lol I’m getting through them pretty well!! The sainsburys’s ones if anyone wants to bring any! Lol

We had an evening time visit from Kas and Hannah, the nurses from downstairs which was lovely and also Jenny came to see me earlier in the day, she was one of the nurses who really helped me last week when I had severe back pain which tonight has decided to make a reappearance, not bad or anything but more so than normal. Never mind, I requested more oramorph – drugs on demand, like Amar just said, that’s some people’s idea of heaven! Lol
It was nice to see Kas and Hannah and Jenny and really shows they care when they make a special effort to come say hello to us all. It is much appreciated. We were telling them about how things had progressed to this stage cos obviously before last week they had never met me as I had never been on the ward in Nottingham, I’d only ever been in the daycase unit! We also chatted about being students and going to West End Shows in London lol. Can’t believe in July I walked 20 miles round London, not knowing then I had lymphoma! We just thought I was unfit and couldn’t keep up with everyone! A month later I was in hospital not being able to breathe!!
Aside from that today nothing much has happened, have a nice night nurse called Olivia who I think is Chinese….or maybe Japanese, I’m not sure but she’s lovely and she has provided my pain relief! Sophie and some uni friends are coming tomorrow so I am looking forward to that! I also got some new Pj’s today which are lovely so thanks mum! And a new scarf from dad so thanks dad! If anyone does come from Aston anytime soon can you please bring me a copy of the Aston times – the one I am in cos I haven’t seen it yet!! Well I’ve seen it online but not a hard copy.

Also wanted to say happy Birthday to sooty for Monday, I will get you a pressie when I can I promise! Also to Ria and Mand and Amar whose birthdays have unfortunately bypassed me somewhat but I am thinking of u guys I promise!! Also Becky (Turner) who I know is your birthday on Monday also! I remember Feb last year being just one spate of birthdays in a row!!
I’ve added a video to facebook that I made ages ago when we first finished uni and I thought you guys might like to see it. Don’t think I can add it to here but I’ll try one night when I have more time. The pics run a bit fast but you get the gist of it!! I will post about my willows foundation event tomorrow and I have some fundraising news which I will sort out tomorrow and post about on here hopefully!I am hoping for a Liverpool win tomorrow but I think it very very unlikely..........

Anyways that’s about it for today and we shall see what tomorrow brings…..
Mel xxxx

New Blog entry

2008-02-25T10:49:00.000-08:00

BRAND SPANKING NEW BLOG

Ok so we’re up and running officially again now! Woo and I hope you all found my new blog! I’ve tried to make it all clear anyways!

There is nothing much to report medically. Everything is the same in hospital. No major side effects as yet from the chemo but they are expected more on Monday especially with regards to a sore mouth though I hope they can still keep the sickness at bay! I get a rest from chemo tomorrow as have had my 4 days worth of ‘Eptopiside’ now. I start fluids on Sunday with the last bit of the chemo being given on Monday. So I’’ll be constantly going to the toilet Sunday/Monday! My line is all working ok which is fantastic, in fact I will have the stitch out of it tomorrow.

And so everything so far in terms of chemo has gone smoothly. It went up for 2 hours a day, through a bag, I never felt a thing and that’s that! I saw Dr. Haynes yesterday like I said but there was nothing new to report really. The funding issues were all sorted out so we’re just getting on with things! I finished my 24 hour weeing sample this morning so that was nice, no more weeing in bedpans till Sunday now lol. Dr. Macmillan who is Dr. Haynes colleague popped by today to check my progress and how things were going and like he said the chemo I’ve had the last 4 days isn’t the key one really, it’s the one I have on Monday and how these work together that will get me hopefully some kind of response and shrinkage of the tumors for however long.

My symptoms are still here, they haven’t improved really but I’m comfortable enough, I can walk to my en suite bathroom but that is my limit. Pain in my back is decreased though still get odd twinges and on oramorph daily to help with it. I'm still on high dose steroids called Dexamethazone (spelling may be wrong there!) which help keep things comfortable and also make me eat loads!! lol so my appetite is good even if the food that’s put in front of me is average! I think it might be sausage, chips and beans tomorrow though…..interesting!

Having the anti - clotting injections everyday in my tummy still, they say when/if my platelet count drops below 50 which is could potentially do next week I won’t need them as my blood will be thing enough! But at the min I’m on a high dose. To be honest as painful as they are I know they are doing it for a reason and that makes it worth it! Without them my swelling feelings and symptoms would be worse and much more dangerous so I feel in a way more comfortable having them! Even if my poor tummy is so bruised! My old wound where my Hickman line was is well n truly bruised! I’m quite proud of it!! My nurse Kaz from downstairs came to say hey today which was nice though my nan always embarrasses me in front of the nurses lol! She means well bless her. It was nice seeing Carol and Nan as well even though I hope it doesn’t upset nan coming, I want her to be ok with things though I know that’s hard. Becky is coming tomorrow so I am looking forward to that. And Sophie and Nick hopefully on Sunday.

I didn’t sleep really last night and as a result slept a bit during the day today but I kinda like chilling in the day sometimes! I hope I wasn’t too boring company for mum! I text Dan Robinson too in the middle of the night (well his daytime as he is in NZ) as I was so wide awake so thanks for texting me back Dan! Sleeping isn’t really an issue here, I sleep when I feel like it to be honest! I won’t be too much later in bed tonight but it’s still late really I know! I think the nurse last night thought I’d just stayed up all night lol! I was on life-site last night (Lymphoma association website) and I find the chatroom so useful, esp when I’m in here so thanks to anyone who was on there last night. Also I am gonna phone the Lymphoma Team next week or over weekend for a chat as they are always so helpful in the chatroom I figure why not use their phone service as well and it might help to chat a bit. Also for anyone who is affected by lymphoma you can ring them or chat about different issues, you don’t have to have the disease to use their service. Their website is in my LINKS section in the glossary but for anyone interested its:

http://www.lifesite.info/start.html,

The general lymphoma association website is full of info as well about my disease.
I’m also seeing a psychologist eventually but that is being sorted out at the min. One of the girls from the Life-site is ringing me over the weekend as well so that will be cool to chat, and she’s ringing from Uruguay! I’m still feeling ok in myself and eveything but I think it just might help to chat through some issues with these people cos obviously I do have issues! I’m not made of total iron!
I felt a bit down today but I think it was mainly tiredness to be honest and once I’d closed my eyes for ten minutes I felt fine again! Sometimes I have moments like that! I think the unfairness of things just hits me for a sec and then I snap out of it. I’m scared of getting upset at the min as if I get upset about one thing I’m frightened I’ll not be able to stop getting upset and in here I just don’t think I could cope with feeling low or depressed. I need to keep my spirits up and try and remain as ok as possible with the whole situation. Like my ‘hope for the best but be realistic’ attitude is working me right now so I wanna keep it that way! I think I sometimes like to forget how ill I actually am. I mean I can’t breathe but that seems normal to me now! Which when you think about it is pretty scary!! I don’t like to think about the tumors growing in me really, that might scare me more. It’s weird.

Although I’m kind of curious to see my scan, just to see what it looks like, I might ask if I can look at it. Enough about that anyhow! I’m planning my Willows foundation thing this weekend so I will update you on the plans for that over the weekend – I’m pretty excited about it to be honest!
Also the woman who I shared a room with downstairs has gone home today so that’s great news, her cancer was NHL but was terminal and really were aiming to get her home and comfortable and living some quality of life for however long. They were hoping to get her to visit London to see some family soon so I hope she gets to do what she wants. She was lovely.

I wrote yesterday about the Take a Break article. I’m sorry if I offended anyone with it but I just feel I have to say what I think. I had a letter today from Aston asking about going in to choose my final year options! Lol I must still be on the list of second year students even though I’m on leave of absence! I think they may have wanted me to do 2nd year before final year! Lol. I will email them soon, I have no idea what I have to do with regards to uni. I think at the min I will just keep it open and stay on leave of absence cos u never know. I just don’t wanna abandon everything yet even though I don’t think I would return should I get a cure I don’t wanna rule it out!

Finally getting some money through from the government, if you read my dad’s blog you will understand our battle for financial support! Well we’ve got it now but boy has it taken time!! I will not be supporting labour at the next election. I don’t know who I will be supporting but it sure as hell won’t be them!

Someone came on msn tonight who I know briefly from uni and spoke to me. They aren’t on face-book and although they know I have cancer they wouldn’t have known how things have progressed. He asked how it was all going and I briefly explained you know ‘not good, treatments haven’t gone to plan and I’m now not very likely to get a cure but I’m remaining hopeful until told for definite’ and his response was: ‘hang in there, you’ll be fine.’ I actually wanted to scream ‘DID U JUST READ WHAT I PUT!!!’ lol, I mean I didn’t say that and I ignored him and just carried on talking about other things because I just thought what a silly thing to say when I’ve told you that! It’s someone I barely know so I can get over it, I just thought it was a bizarre response. Not even ‘sorry to hear that, hope things get better’ just ‘you’ll be fine!’ I found it very strange.

And I spoke to Amar who says he avoids my blog which I understand, he says it’s hard to read and he prefers pretending I’m ok sometimes and then he can still take the mick outa me! This is fine by me!! I’m used to it!!! Lol!! I understand if some people don’t like reading it. It isn’t easy I know that but it is your choice and I respect everyones decision whether they read it or not or every now and again or just choose to read face-book or my dads. Its all fine! Anyway this is pretty long again isnt it! Oops! Anyways sorry! Night night xxxx

Temp Blog

2008-02-25T10:46:00.001-08:00

TODAYS ENTRY - 7th FEBRURAY!

A late blog tonight!

Not much to report really, I feel the same, no sickness or anything so far, bit more tired but even that has been ok today. Main discomfort is in my lower back cos of sitting down all bloody day! I need some cream or something I think! Sooty came to see me which was ace as always and I enjoyed that, having a good natter! And I enjoyed the maltesers - well I am as I write!! And can I say Sooty if your reading this I‘m well impressed u joined the Bone Marrow Register – I think its an amazing thing to have done and that goes to any of my friends who have done it and also to those who donate blood too cos I have that a lot as well!! And I should have done it when I could!
Had a very cheery male nurse tonight, kinda reminds me of Kas from downstairs lol. Anyway he collected all my wee that I’ve done a 24 hour sample of! Lol fun stuff!

Aside from that it’s been a standard day, had chemo which is all very boring, had my injection which is all very painful. Had my dressings changed and the biopsy one is finally healed! Woo!! and the old hickman line one is well and truly bruised! Had a good chat on the life-site chatroom tonight which a chatroom for lymphphoma sufferers and people affected by it. And also to Hayley, an online friend I talk to on msn which was great. And also Carly from uni.
I managed to add some photos to Facebook so check those out though I doubt I’ll try and put one on here tonight cos of connection.
Carol and Nan coming tomorrow which shud be good and then Becky on Saturday which I am looking forward too.

Saw Dr. Haynes today too, came to check on how things were going, everything the same, we just wait and see how this all responds really and how long for being the key question. One question I do wanna ask him is what he means by ‘lung involvement’ cos I already know my lump is pressing on my lung - I’ve always known that but does he mean its in my lung now? Cos he told us this after the PET scan you see so I’m unsure now! But next time he comes I’m gonna ask. I only remembered when he’d gone! I might even ask Faith, the nurse, cos she might know.
Also saw some people from a company called Clic Sergeant today who are gonna help me find a psychologist and give me a youth worker who will help me meet others in my situation and stuff and they can provide short holidays and breaks for families free of charge! They are also gonna give me 200 pounds as a grant! So that’s gotta be good!!

I read the instalment of Take A Break today about a lady I know who has the same cancer as me though her initial treatment (RCHOP) has gone to plan. I found it harder to relate too than last weeks article but I understand its her story and her way of showing how she’s managing to deal with everything. I just find it hard to read really sometimes, not just her story, I guess it would be the same for anyones who has been written in this way. It just seems to me that things are going well in a lot of ways with scans showing reduced tumours, something I have very little experience off - yet I still get a negative sense from the article when I want to feel hope from it. If her RCHOP doesn’t work they will be able to offer her other treatments, like me! I hope this makes sense, I probably shouldn’t write about it really. We are in totally different situations and one persons experience is very different from another. But anyway I think I just wish I found the article more positive because I really like this woman and feel she is a very positive person and she has gotten a clear scan now so that’s excellent news! I hope things continue to go well for her!

Also a shout out to Mark, who I don’t know if he reads this but as a fellow Aston student he received some positive news on his last scan and aside from some radiotherapy is cancer free so congrats! And thanks for supporting me while ive been going through everything. I hope I’ve helped you too!!

Anyway, I think that’s all I can say tonight without boring the arse off you all! Still feeling hopeful yet realistic and that’s the way its staying at the min!! Symptoms all the same as yesterday. They say chemo will take about a week to kick in, in that respect but that will clash with my bloods dropping so in a way I may not notice a difference for a few weeks yet potentially though some of my breathing issues should get easier as should the back pain etc even if I feel ill still.
So guys…thanks for reading and night night. xxxxx

New Blog

2008-02-09T13:46:00.000-08:00

Hey, Becky here...just in case you haven't heard, mel's got a new blog as she cant access this one from her hospital internet for some reason...i think she'll write on here again when she gets out but until then theres a new blog at...
http://melsfightnhl2.blog.co.uk/

The Injection Method and FOOD!

2008-02-06T16:39:00.000-08:00

Mmmm, that Ham cob was nice! I’ve just finished eating one pre-prepared before mum left earlier! Tea looked minging so I didn’t even attempt it tonight! Though my dinner was pretty ok – a beef and onion pie. Also had the large concoction of tablets I take before bedtime plus the cough medicine which makes my teeth go all sensitive for some bizarre reason! The food here is ok actually, I think the steroids mean I’ll eat pretty much whatever is in front of me but still I don’t find it as bad as I have done in the past! This morning was met by a great surprise, freshly cooked toast! My only real complaint with food has been breakfast - usually the toast is cold by the time I get it and I just have to force it down so I’m eating something but this morning – Amazing stuff - it was all freshly made and you could like actually taste the butter! Incredible! Small things please in here and it was a pleasant surprise to wake up too! Lol! I still snack on chocolate digestives and lots of Maltesers though! Great stuff! And I’m back on the sandwiches and ham cobs (rolls or whatever u wanna call them!).

Anyway enough about food I think for one day – gosh you can tell I’m on steroids can’t you! My internet is really peeing me off, I got such a god signal in my old room and this one is crap! It just disconnects all the damn time! I hope it improves a bit. I might fiddle about it with a bit tomorrow; see if I can’t figure out a better position for it or something. Also they talked about another wireless connection for me so I might ask about that! I should be grateful I can get anything I guess but after almost a week of great connection, now having these probs is really frustrating and it’s the little things that do frustrate you in here!

Anyway today Debbie Hollingworth came to see me from school and it was really great to see her, I really appreciate people making the effort to come and I loved the muffins, scarf and cream for my itch!! My aunty and uncle also came and it was also great to see them and although they weren’t allowed to bring in the flowers they bought me the thought was there and I do appreciate it!! Sadly Claire was ill and couldn’t come so I was disappointed but I wish her a speedy recovery and I’m sure she’ll be on her way here with Maltesers someday soon!! (No hints there Claire by the way ;P). We talked about normal stuff and about the medical situation etc and it was a welcome distraction from well hospital I guess and I just enjoyed the extra company! Sooty is coming tomorrow so I am looking forward to that!

I had my second day of chemo today. Again no side effects though I am noticing I’m getting more tired in the day, whether that be lack of sleep at night or chemo tiredness kicking in or a mixture of both I’m unsure but apart from that I’ve been lucky and no major issues so far! The nurses are all still great and the doctors popped in to check how I was doing so that was all good.

I had my ‘belly injection’ which is actually called Clexane again today. My poor tummy is so sore from all the little pricks (lol that sounds very bad but how else do I put it??!). And I have 2 bruises!

There are 4 methods of doing this injection and I’m gonna be boring and take you through them!

There’s number one which is the ‘Fast Dart Player’ - the nurse almost throws the injection into you like a dart and pushes the stuff in fast- the end result it that you don’t feel the prick of the injection but the stuff stings as its going in and afterwards a lot!

There’s number two which is the ‘Slow Dart Player’ - the injection is inserted in the same way, like a dart, all quick and to the point but the stuff is pushed in slowly and as a result you get the sting afterwards but not as its going in!

Number three is ‘The Artist’ - they put the injection in slowly and the stuff in slowly, you feel the injection a bit more but you don’t get the sting as it goes in though as always you get it afterwards…the bad side is that it takes longer to go in as well!

And finally number 4 is ‘The Fast Artist’ who puts the injection in slowly which you feel more, then injects the stuff fast so you feel the sting as well when it goes in and afterwards! This is the worst case one!

So they are the 4 methods! I think I prefer the slow dart player though sometimes the fast dart player is ok cos it’s over quicker! Bad side – there’s no way of stopping it stinging afterwards completely and some days it just stings more than others!!! I have an ice pack which I rub over it to help afterwards! Lol you can see how much I’ve thought about this stuff can’t you!!! Sorry to bore you all with that!!! I could give myself these injections but I still can’t bring myself to do it though it would be a fantastic barrier to say I’d overcome it!!! I tend to just pull on my injection face and grin and bare it now tho!!!

So that’s my injection story to gross you all out with! Apart from that I watched coronation street and the England Game which I thought was ok, second half better than the first and Bentley looked good. Pity Owen didn’t play though. I spoke to Hannah and Becky which was fine and good fun and also my hospital phone rang which I got very excited about! And it was a woman from Clic Sergeant who is coming to see me tomorrow about counselling services and also they may provide me with some money so that’s all good!!!

My symptoms are about the same, breathing not great and on oxygen as and when, back pain is easing though I get odd twinges. Oramorph is always at the ready!! My bruise on my old hickman line site is a cracker! I’ve never seen anything like it! I mean it!!!

I’ve decorated my room with some Liverpool stuff and some photos etc so that’s all good, may as well make myself feel at home hey!!! Still feeling ok about everything and thanks for all the supportive texts and messages and everything – still all appreciated! I’m trying to upload some photos on facebook but the internet is taking ages so I dunno if it will work or not!

The days here are ok, they go quicker than you’d think! Sometimes the morning drag before mum and dad get here but to honest even then its not so bad, there’s someone comes in to make your bed and you can doze off if you want so there’s always something really!!! Plus Jeremy Kyle helps for an hour in the morning! I found some quotes form first year today, one from Mand that made me laugh saying ‘Hell there’s so many ho’s out there, if I was a guy I’d f*** them!’ hilarious! And also Soph send me the ‘Needs Special’ quote in a text! So funny! Thanks for those guys – they really made me laugh! And Amar when he said ‘Bitch I ain’t your baby’s daddy!’ I found that one too!

I think that’s me done for the night anyway so I’m gonna head off now! Night night everyone xxx

New Room but Dodgy Internet!

2008-02-05T15:45:00.000-08:00

Hopefully this will be shorter tonight; for once I feel knackered and may have an early night! Well we’ll see!

Started my chemo today as planned, Dr. Haynes came and told me they were going ahead despite not getting the funding decision but that was his concern not mine and so that’s that! Anyway I was moved up to the transplant ward today, kinda sad to see all the familiar nurses faces from toghill ward go but the ones up here seem just as nice so far so its all good! I had a wave of tiredness this afternoon after a trip in the wheelchair to the shop! I think its just lack of sleep catching up with me!

Anyhow my new room is good, all on my lonesome now but its ok and I have my own toilet which is easier! Had my chemo between 4 and 6 today. Only connected 2 hours a day for next 4 days. Side effects shud stay away until at least after the weekend, here’s hoping anyhow! Like I said yesterday its when my counts drop I’ll feel the worst. No idea when I’ll be home, a good few weeks yet anyhow but I’m still ok!

My biopsy scar finally looks like its healing up which is great though where my old hickman line is I have a HUGE bruise! Its seriously crazy!!!

New line is all still ok and getting used to it, in fact I’m so impressed with how neat it all looks! My breathing felt very laboured today but it has eased a bit tonight and no back pain so far so that’s good! Lots of visitors tomorrow which will be good! And yes Becky of course I am counting the days until you return on Saturday!!

I couldn’t get on lifesite tonight L annoying but I think it was the chatroom not my internet though I did have internet issues for a while it seems to be working ok now though msn is a bit temperamental! I can’t spell that word!

Erm I don’t know what else to say tonight, apart from I feel fine and I’m looking forward to visitors tomorrow and I might for once get an early night!

For anyone visiting Me I have to emphasise that if you've a cough or cold, or the beginnings of a cough or cold, or you've had a cough or cold or any other disease that's infectious, please stay away from the hospital until you're better. Due to the nature of the treatment on this ward (Bone Marrow and Stem Cell Transplants), they have to be strict. Passing on those germs could have serious and in some cases fatal consequences for the patients, so if you're unsure, please ask.

So that’s that for today I think!
Night night guys xxx

Chemo Delays and Being Realistic!

2008-02-04T19:50:00.000-08:00

Well its half 2 in the morning and I’m still awake. Steroids really not aiding sleep these days but I sleep better in the mornings anyway.

Well I know I said I was meant to start chemo today but I didn’t! I missed breakfast cos I was fast asleep but I wasn’t bothered. Mum and dad got here about 11ish. I had my dinner which I devoured and had a wash.

I had all my dressings changed on my biopsy, old hickman line site and new hickman line site and everything is ok. This new line looks neater than my old one. Its still a tad sore and it’s a bit swollen but that is normal. They are getting someone to come look at the biopsy one cos its scabbing over and they want something on it to lift the scab off and allow it to finally heal! Its been there since August! Hannah the student nurse sorted it all out anyhow, she’s really nice and chats to us a lot throughout the day which is good. She’s a student too so we’ve got stuff in common!

Anyway after that I was connected up to the flush ready for the chemo but then it transpired that actually it wouldn’t be going ahead today. They have to get the funding for it through Burton Health Authority and they were saying they had a meeting to discuss such matters at the end of the month…err yeh that’s good for me, I need it NOW! Anyway Dr. Haynes is on the case and is sorting it for tomorrow. He said if they don’t get a decision by tomorrow they will just go ahead anyway and worry about funding later. Fact is, I need the treatment soon! It’s scary that funding can affect treatment though, but I’m sure Dr. Haynes will get it done, well I know he will! I had a blood transfusion today as my counts were a bit low and so they thought it might help and may also ease my breathlessness a bit. So that started around 7ish and finished about 1 this morning. No issues as yet with it!

They also need to rush the chemo because they can’t put stem cells back in over a weekend and the chemo takes 4 days followed by a one day rest day before stem cells are put back in so they may have to infuse it a little quicker or maybe they still start Wednesday so the stem cell day will fall on Monday. I guess we’ll know tomorrow but I think they would prefer to go ahead tomorrow if possible.

Faith, my lymphoma nurse came in to talk to us about the actual process now for the next 3-4 weeks. Once I start my high dose chemo it will take 4 days. I am having the E and M drugs from the normal full BEAM chemo regime. The E is for Etoposide and the M is for Melphalan. Etoposide is given days 1-4 for 2 hours a day so I’m not connected all day or anything. Faith said I should tolerate it ok and they can give me some good anti sickness drugs that usually work well. The Melphalan is given over a short amount of time too, cant remember the exact time but I’ll be connected to the drip on that day (day 4) for 24 hours because I have to have a lot of fluids with it, like bag after bag! So I’ll be constantly going to the loo and they monitor your kidney function really closely. This is the harsher of the two drugs and a sore mouth is a common problem so they advise you to suck on ice half an hour before and after the treatment is given to help prevent this and they will give you mouthwashes etc. It can also cause diarrhea (lovely!) but again they can give you stuff for this.

So after day 4 I have a day of rest with no chemotherapy or anything. Then on day 6 the stem cells will be returned. I will most likely be transferred upstairs to the transplant ward for this part as that’s what is usually done. I will be in a side room probably but not in isolation and can still have visitors though if you are ill or have an infection or anything its best to stay away during this time.

So the chemo by day 4 will have destroyed my remaining stem cells and so I need my old ones that were collected a few weeks ago back in me!!

When the stem cells go in Faith said some people experience a funny taste in their mouth, which is either like tinned sweet corn or tomato soup! Apparently it will be short lived though but any visitors that come will be able to smell it for a few days after! I’m hoping for tomato soup!

So the stem cells being put back in will help recover my blood and my system. It is at this point I will probably feel quite rough as they don’t work straight away. However Faith said that once they do start to work they do so pretty quick and within 24 hours you can notice a big difference in wellbeing. After that it is a case of waiting for my counts to come back up. They will be low for a week or so and that’s when I’m most prone to infection and at risk. Once they are at a suitable level I will be able to return home. I don’t know how ill I will feel or how long it will take for the chemo to take my symptoms down etc. It’s very individual and the amount of time I’m here for really will just depend on how I react to it all. So no I have no idea when I’ll be home! They will probably do a scan a few weeks afterwards to see where we are with things.

Donor search has been initiated in case we get to that stage but it will take ages to find one or could do so I will just tell you as and if/when we ever get to that stage.
So that’s my next few weeks basically! And that’s all the medical news for today.

***********************************************

Aside from that Faith has offered me a counselling service so I can speak to someone outside of my family and friends for support and they will come visit me in hospital or at home. I did have a psychologist but with no longer being in Burton its harder to see her. And I think I need someone outside of everything who I can just chat too. I really like Faith, she’s so easy to talk to and explains everything very well, she's sorting out the Willows Foundation stuff out too.

I’m still feeling ok in myself, same as yesterday really. Taking it as it comes, I’m not getting depressed, I can’t. I’m finding it easier to be normal and in control. I’m being me.

One thing I do want to say and I hope I don’t offend anyone cos I know I always say ‘oh say what u think and I’m never offended’ and I do still mean that and I don’t want you to stop messaging me in fear of offending me cos it doesn’t offend me as such but it makes me wonder if people are taking in what I’m saying. The reality of the situation that I am in. Maybe people just don't know how to react and thats totally understandable. Basically a few people keep saying to me ‘oh its ok you’ll get through this no problems’ and ‘I’m sure you’ll be ok and youll be better soon, its just taking you longer’ and things along those lines.

Well actually no you don’t know that and that’s not realistic, I understand why people say it, to make me feel better, give me hope and everything and like I’ve said, I’m being hopeful that this treatment will get me to bone marrow transplant stage which is my CHANCE of a cure but it ISN'T likely now. At one time I didn't consider not getting the chance of BMT, I just assumed I would, naively probably! And it was explained that I may not get there, I just chose not to hear that part. But my attitude has changed now.

The odds are against us, dramatically, the cure rate is LOW, lower than before. Lower than that 30% I quoted at Christmas. I don’t have any specific stats now, I don’t need them because its my statistic that matters but I do know that. I’m not stupid. I’m not being negative I’m being factual. My cancer is spreading and its aggressive, its never responded for more than 2 weeks before and to get to a BMT I need it to respond for AT LEAST 12 weeks! Really it needs to be longer and it needs to reduce in size alot. It could happen yeh, I’m not denying it and I wish more than anyone that it will but chances are it WON’T. The reality is that I’m looking at 4-6 weeks of holding it, feeling better and then maybe we move on to controlling it. I know I prob sound like I've resigned myself to this but I have to take the facts and the reality. I talked to Faith about it tonight and she explained there were things they could do to make my breathing more comfortable should we get to that stage so my quality of life would be improved and like I wouldn’t have to live with severe breathing difficulties. I could still do stuff, they could potentially control it for some time depending on what options were available. Although it would eventually beat me I could have a while to enjoy myself and live a normalish life!

This doesn’t scare me, it reassures me, I would rather have the knowledge that if I can’t get a cure I can have a quality of life and make the most of however long I have. I know I’m being a bit blunt here but this is how I feel. I pray everyday my tumor will respond and I’ll be in that cure statistic, of course I want nothing more!! I want a long, healthy life!!

But I also realize reality and if I start facing that now then I think I’ll cope better in the future and make the most of what I do have. If anything this has made me realize the time we have here is so precious and you should just make the most of it! I am soooo glad I made the most of my 2 years at uni recently! It’s made me realize the importance of it. So yeh I just wanted to point out this, I don’t know if I should write this stuff really, maybe its too much for people to take in and stuff, but this is my blog and I want some sort of record of everything so I’m putting everything into, no matter how much it might be hard to read. I have so many thoughts, some of them have to spill out onto paper! and everyone darts around the issue I think sometimes. My family dont, we are very honest but I'm finding it harder to deal with people who don't seem to understand the reality of things.

People keep saying I’m amazing for coping how I do and they would just crumble. You wouldn’t, when faced with this you find a way of dealing! You have too! I’m not amazing, I’m faced with a situation and I’m getting on with it, I’m taking control of it and dealing with it how I want, if I wanna feel crap, I will. If I wanna have a positive day I will. But it’s me who decides it. I do need help, its not easy and that’s why I chat to people a lot and am so honest because it helps me. If I bottled it up I wud go crazy! I have a lot of thoughts so writing them down helps me clear my head.

But please don’t feel sorry for me or pity me, I’m not. I’m getting on with it. My life for the next 3 weeks or so is in this hospital so I get on with it, I enjoy what small pleasures I can, like being able to use the net, have visitors, chat to the nurses. It’s my life right now. I’m not trying to be all superior and ‘im coping so well with this’ but I just cant be doing with sitting here living in daydream world where everything is going to be fine and lovely. No, I’m hopeful but I’m REALISTIC! And I think everyone else should be too. As hard and as harsh as that may sound.

Ok rant over and I’m sorry if I like offended everyone! Please don’t stop sending me messages though. If u don’t know what to say say that! Say your finding it hard to deal with if you are, say you agree with me, say you think I’m being unfair by being this honest, say what u think but please be realistic and don’t try and tell me everything will be hunky dory and I’m gonna be fine, you can tell me you hope I’ll be ok but not that I WILL be because u don’t know! And it makes me angry when people say it because I think ‘No your not the doctor, stop living in lala land and come back to reality!’ Hope for me, pray for me but don’t live in the dark.

Anyway this blog is probably too long for people to read now anyway, I’m surprised people do read on for this long. It just gives me something to write late at night when I’m awake! My nurse today was called Melissa, girl from America, lovely she was too! And Hannah the student nurse has already laid claim to taking my stitch out my new line on Friday so she can practice! Lol bless her, I trust her though! Plus cos of where it is I want someone I trust and who is a woman! I have to be a bit exposed when they are doing the dressing etc! I have people coming to visit on wed and thurs and fri so that should be good and mum and dad will be here tomorrow. I do so appreciate them coming everyday, I don’t know how they do it! And how they cope with my constant demands like ‘can I have a ham cob?’ and ‘I need a cup of tea!’ Bex is back on Saturday too so some good freaking out with the line is due!

In terms of symptoms and how I am, my breathing is laboured, I can’t walk to the toilet unless pushed in a chair and it’s hard getting into the chair from the bed. I’m on oxygen overnight and for some periods in the day. My swelling feeling is reduced but flares up randomly during the day. The back pain comes in odd twinges but nothing compared to how bad it was the other night. The line is a bit sore but nothing major. The itching is not as bad as yesterday thankfully! My chest feels generally tight but my cough is being kept at bay. I’m comfortable enough, the steroids do all this and we know they won’t last forever but they are doing a job at the moment. If I stopped taking steroids and had no treatment for about 24 hours my symptoms would be worsen very quickly. That’s the speed at how it grows.

Essentially that’s it for today and we will see what tomorrow brings…I am a bit nervous about the chemo starting but lets just get on with I say and Faith has explained all what to expect. Dr. Haynes should be round in the morning so I will see him then although I don’t expect him to say anything new. So that’s the news from Bed 1, Bay 4 on Toghill Ward in Nottingham City Hospital!

Sorry for being all like angry and stuff. Just have to say what I think. I need to take some more photos cos I have like none to add to this tonight! I'll put an old one up.

night xx

A Glossary....

2008-02-03T17:03:00.000-08:00

Glossary of terms

Ok some of the medical terms I use now must be confusing so I’m writing a short glossary of what certain things mean! Anything anyone is missing out or doesn’t get then please say. There’s some Links at the bottom too.

NHL – Non Hodgkins Lymphoma. A Cancer of the Blood.

Mediastinal large B-cell lymphoma – my type of NHL. It is a rare form of NHL and is a type of diffuse large B-cell lymphoma. It comes from a rare type of B-cell lymphocyte in the thymus gland, behind the breast bone. Its common in younger women aged 25 – 40.

High Grade: means the lymphoma is aggressive and grows quickly. This is usually good as they respond better to treatment. This is what I have.

Low Grade: the lymphoma is slow growing and often you can go years without treatment or symptoms.

Stem Cell Harvest/Collection – Stem cells collected through a special machine that circulates your blood, takes your stem cells from your bloodstream and returns the rest of the blood to you.

Autologous SCT – Stem Cell Transplant using your own cells. High dose chemotherapy given before your own stem cells that have been collected from your bloodstream are put back into you through a drip to recover your immune system as chemo destroys your own remaining stem cells.

Alllogeneic SCT – Stem Cell Transplant using someone else’s stem cells. High dose chemotherapy given before someone else’s stem cells are put back into you through a drip to recover your immune system as chemo destroys your own remaining stem cells.

BMT – Bone Marrow Transplant – Someone else’s bone marrow given back to you after high dose chemotherapy given destroys your own bone marrow and immune system. The new immune system when it grows attacks the cancerous cells. A BMT is basically an SCT but uses stem cells collected from the bone marrow and not the blood stream.

Bone Marrow - Bone marrow is a spongy material that is found inside the bones (particularly the pelvic bones).

Stem Cells – Within the bone marrow, stem cells develop into the different blood cells. Red Cells, White Cells or platelets. When the cells are fully mature they are released into the bloodstream.

Red blood cells - carry oxygen to all cells in the body

White blood cells - which are essential for fighting infection

Platelets - which help the blood to clot and prevent bleeding.

Lymphocytes –a type of white blood cell that form abnormally during lymphoma. Lymphocytes are an essential part of the body's defence against infection and disease. There are two main types of lymphocyte: B-cells and T-cells.

Lymphatic System - The lymphatic system is one of the body's natural defences against infection. It is a complex system made up of lymphatic organs, such as bone marrow, tonsils, the spleen, and lymph nodes (also called lymph glands). They are connected by a network of tiny lymphatic vessels. Lymph nodes are mainly found in the neck, armpit and groin. The number of nodes varies from one part of the body to another. A milky-looking fluid called lymph circulates through the lymphatic vessels. Lymph contains lymphocytes, which are white blood cells. Lymphocytes are an essential part of the body's defence against infection and disease.
There are two main types of lymphocyte: B cells and T cells. All lymphocytes develop in the bone marrow from immature cells called stem cells. Lymphocytes then mature in different parts of the body. Lymphocytes which mature in the thymus gland (behind the breast bone) are called T-cells. Other lymphocytes mature in the bone marrow or lymphatic organs and are called B-cells.
In non-Hodgkin's lymphoma, the lymphocytes start to behave like cancerous cells and grow and multiply uncontrollably,and may not die off in the way they ought to.

Neutropenic – your neutrophils (type of white blood cell) are very low and you have no or very little resistance to infection. You often show no symptoms of infection apart from a high temperature and have to contact the hospital immediately if it goes above 38’C. Your mainly at risk of this 7-14 days post chemo.

Blood Transfusion – Red count is below 8 point something or very low (normal person is 14 I think) and you need an infusion of red cells. Given through a drip.

GvHD – Graft versus Host Disease - If you have stem cells from a donor, even a brother or sister, there is a possibility that the new cells (the graft) will react against your tissues (the host). Basically the donor’s immune system attacks the patient’s body. iIn some people it can become very severe and even life-threatening. It mainly affects the skin, the gut (stomach and bowel) and the liver. The reaction can occur up to six months after a transplant. You can be given medicines to help prevent this effect.

Chemotherapy – Common treatment of lymphoma

RCHOP – the standard chemo for NHL

IVE – my intensive chemotherapy regime I had in derby

BEAM – the high dose chemotherapy that is done as part of the SCT.

Biopsy – The procedure done to get a sample of a swollen lymph node. My biospy involved surgery to remove a sample from my chest.

Remission – No sign of cancer in the body - 5 years remission is classe as cure

PET scan – Scan which invoves injecting radioactive substaces into you to light up active tumour

CT scan – Scan which shows 3D image of the inside of the body, can identify if there is a mass there but not always tell if its active

GCSF Injections – small injections given into the stomach under the skin to stimulate white cell growth. They encourage the stem cells to spill out into the bloodstream as white cells. Often given before a stem cell harvest and also if your white counts needs to be up quicker in time to have treatments. Can be injected yourself or a nurse can do it. The side effects include intense aches and pains! The injection itself is fine!

Clexane Injections – the painful injections I have in my stomach to prevent clotting when I am in hospital and because the tumor is pressing on veins it helps my blood to thin. Again the injection itself is only under the skin and not painful but the stinging afterwards does hurt!!

Steroids – Tablets that help my symptoms. Side effects include major appetite, mood swings, bloating and not being able to sleep!

SVCO - The superior vena cava (SVC) is a large vein that carries blood from the body straight to the heart. It lies in the middle of the chest, behind the breast bone (sternum). Superior vena cava obstruction (SVCO) occurs when something blocks the blood from flowing along the SVC. The walls of the SVC are thin, meaning they easily become squashed (compressed). This is what causes my swelling feeling in my face and is a sure sign my symptoms are on their way back. It is part of the reason for the clexane injections. Symptoms include the following and I get generally all of these except the swollen blue veins on the chest.

· breathlessness, due to swelling around the windpipe (trachea)
· headaches, which worsen on leaning forward or bending over
· facial swelling with a dark red look to the complexion
· swollen neck
· swollen arms and hands
· visible swollen blue veins on the chest
· dizziness.

Steroids help reduce all of these symptoms.

Central Line/Hickman Line/Femerol Line – the insertion of a thin tube in to usually your chest but in my case this time, in my groin/leg area that you can administer chemotherapy through and get blood from. Involves a minor surgical procedure that you are awake for but can be sedated throughout.

Hematology - the study of blood diseases. I am under the Hematology team not an oncology team. Oncology deals with most cancers but mine is under Hematology as it is a cancer of the blood.

Cannula/Venflon - small needle inserted into the back of your hand or into another vein that can be used to inject medicines intraveneously. This is done for most standard chemotherapies though if you have a line in you don't need as many of these.

Blood Sugar test - pricking the end of your finger to draw blood and measuring your BM on a little machine. Done if you are diabetic or if you are on steroids. Not painful.

Blood Test - Inserting a needle into a vein into your elbow and drawing blood. A regular/daily occurance as a hematology patient. They love their blood! Mine is now taken out of my line but if that didn't work i have it done the normal way.

Blood Gases - A blood test but taken out of the artery in the wrist. Very very painful! not gonna lie! they sometimes give you a local anasthetic before they do this. I have had it done twice, neither time under local! it checks the amount of oxgygen in your blood more accuratley.

Blood cultures - done as an infection screen, like a normal blood test but checks for any bugs in the blood.

Oramorph - oral morphine - a godsend for pain relief

Palliative Care - means a cure is no longer an option and treatment turns to controlling the disease for as long as possible with chemo/radiotherapy, other treatments.

Terminal diagnosis - palliative care is essentially a terminal diagnosis, eventually the cancer will resisit it though sometimes it can be controlled for long amounts of time. When palliative care stops working they just treat the symptoms and ease any pain etc.

BP - Blood pressure, part of daily observations. Mine is usually slightly low for some reason!

Sats - Saturation levels - measures oxygen levels. normal range is 99-100. Mine are about 93 at the min without oxygen, sometimes up to 95. with oxygen they can get up to 97.

Temperature - obvious i know but is part of obs done each day, normal range is 35'c to 37.5. anyhing above 38 is worrying. 2 consistent readings between 37.5 and 37.9 can also cause concern.

Pulse - again obvious - meausres your heart rate, normal person's is between 80 - 100. Mine usually averages around 117 - 125ish. Does sometimes go up to 140ish when symptoms are bad. This is known as tachycardic. It once peaked at 280 when I had a heart scare, averaging around 180 for most of that night. Since then I have had a heart scan it has come back clear and they think it was due to swollen lymph nodes around the heart or a reaction to a blood transfusion.

LINKS

CancerBackup's page on my type of NHL:

http://www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin/TypesofNHL/MediastinallargeB-cell

CancerBackup's general page on NHL:

http://www.cancerbackup.org.uk/Cancertype/Lymphomanon-Hodgkin

CancerBackup's Page on some of the treatment I have/will have:

http://www.cancerbackup.org.uk/Treatments

CancerBackup's page on Blood Transfusions:

http://www.cancerbackup.org.uk/Treatments/Supportivetherapies/Bloodtransfusions

CancerBackup's page on Central Lines:

http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Linesports/Centralline

General site on NHL - some very good personal stories and information

http://www.lymphoma-net.org/

The Lymphoma Association and Lifesite

http://www.lymphoma.org.uk/

The Macmillan Page - the discussion topic area is good and I sometimes post on it as mellfc

http://www.macmillan.org.uk/

My friend Hayley's Blog, she has Throat Cancer, her blog inspired mine

http://www.kickingcancersarse.blogspot.com/

My Dads Blog

http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=237496223

My Facebook Group

http://aston.facebook.com/group.php?gid=6829213762

A chatting to Friends day!

2008-02-03T15:24:00.000-08:00

Hey everyone

Well a pretty uneventful day really in terms of medical stuff. Woke up at 6am to the usual obs; blood pressure, sats and temperature and also had bloods taken, through my new line I might add lol! All in working order. Then I dozed for a bit, surfed the internet via my phone and spoke to Becky on the phone just after elevenish. It was good talking to Bex and she seems good at the moment, apart from a nose bleed! Thats me and Bex last Sunday when I first came into hospital. We watched the FA cup game in the Day Room!

Mum and dad arrived then and I had a rather nice - by - hospital - standards beef roast dinner which I ate all of! Steroids eh! The on-call doctor was pleased with me and was glad to see the steroids had had an easing effect. The nurse I had today was nice enough again, a male guy I haven’t had before, not very chatty but then to be honest I haven’t really needed anything doing today!

I can’t stop itching though which is annoying! It’s a symptom of the lymphoma but it’s just so irritating! Itchy arms and legs and back! The weirdness of this disease is just bizarre! Stitches and wounds from both lines are all itching too which is a good sign as it shows they must be healing up. My back pain has been kept at bay today, slight twinges but nothing significant and I’ve not had painkillers since 7am which is a record in the last 2 days! I was on them every hour! The steroids have eased my breathing and although I’m still pretty much bedridden I can climb out of bed easier and be wheeled to the toilet at least! I’m still on and off oxygen to ease things and I can still feel swelling in my face but it’s nowhere near as bad as I felt yesterday and the day before. My leg is less sore from the line as well which is helping movement.

Then this afternoon I had some friends from uni visit, thanks to Bex, Mark, Andy, Nat Sarah and Steph who all came, I really appreciated it and I liked the chocolates, cake and juice!! So thanks again, it really does help seeing familiar faces and I can’t say enough how much I enjoyed seeing you all there! And for making the effort to come! It really does show how great everyone at Aston has been throughout all of this. Please feel free to visit again whenever, I can’t stress enough how much I enjoy seeing people.

I spoke to Rachel on the phone after that for about an hour or so and it was great to catch up, even if the news isn’t the greatest to tell I find it better being open and honest with people and I think it was good for us to talk about it all and what happens now. It’s better to be realistic as hard as it may be to face. I think I’m coping ok with everything at the moment which is maybe helping everyone else, I dunno if that sounds bigheaded! But I mean like I’m not shutting myself away into a depression and I’m being quite hopeful and taking each day at a time and not focusing too much on the what ifs and the future so it makes it easier to be normal and focus on getting through each day. I’m being realistic but I still have to have the hope that the unrealistic will happen if that makes sense! Maybe my tumour will suddenly decide to respond for the amount of time I need, u never know! But at the same time I have to be realistic so I’m not let down dramatically if it does go wrong again. Its about balance. And maybe if I’m like that and get that right it helps other people deal with it a bit more easily as well, I dunno if I’m explaining this very well! Lol. Anyway the gist of that was it was good to chat to Rachel! And I missed the weekend in Reading but I was there in spirit guys!! It sounds like you had a good time anyways so that’s cool!

After that mum and dad came back, I spoke to nan on the phone. I can tell a change in nan now, I can’t put my finger on it but she seems to finally be living in the real world with this illness and realising how serious it is and I think it worries her (well obviously) but she is still treating me normally and is still hopeful which is good and is what I need but I can tell she is beginning to accept the truth and everything now which is good also I think. The problem is she doesn’t have anyone at home now to talk too now my granddad is gone so it’s harder for her to get constant reassurance and I think she needs that from us more now. But I spoke to her and I think she appreciates it and was glad to hear that I was doing better today.

After tea I watched dancing on ice which I don’t think is as good as in previous years actually but its something to keep an eye on! I think Suzanne, Gareth Gates and Chris from Hollyoaks are the best and that girl who used to be in Coronation Street too isn’t bad. Glad Aggie went though, she was really crap to be fair!

I also phoned Hammad tonight as I had promised to today as he got back from skiing and obviously had only just found out the weeks events! We concluded in future when he leaves the country or goes on holiday he should pre-warn the hospitals I’ll be in as something is bound to go wrong! But we chatted for a good hour, glad to hear skiing was good and obviously we chatted about what had happened this week. Bit of a shock to come back from holiday too but Hammad is always easy to chat too and says the right things so it was good again, like Rachel, to get everything out and be honest. Like he said I’m trying to keep things as normal as possible and keep the problems physical rather than letting them completely take over mentally and he seemed to think I was doing well with that so I’ll take his word for it and as a compliment! One day at a time and not letting it take over in a depressive way is the way forward. Obviously I have my sad moments and my depressing moments but at the moment they are rare and I am actually quite surprised at myself at how I’m managing to deal. I keep expecting me to like have a moment where it all just hits me and I end up in tears but it just hasn’t happened yet! I plan to just enjoy the days when I can do stuff and get through the days when I’m weaker. I’ll make the most of what I can do each day. Reality will hit me soon enough and I’ll have a down day I know I will but I’m ok at the min and trying to keep it that way! Steroids help!

There is an organisation called the Willows Foundation and it’s an organisation that arranges special days for young people with life threatening illnesses, so like they’ll pay for you to go to a West End Show or something or a football game. Anyway I’ve decided to apply for a special day and I should qualify no problem as I match all the criteria. My original idea was to have a day at Anfield watching a league match there but I don’t think that’s gonna be realistic and with match days only being on certain days etc and the travelling required I just don’t see it happening. Plus that is something I could pay for myself and organise in the future if it is possible.

So I have decided to apply for a social afternoon with my friends and family, say between 20-30 people, I would hire out a hall in Burton (I have somewhere in mind) and there would be a meal and some catering put on and I would be able to invite family and friends and have a kind of mini party I guess! It’s something I haven’t been able to do, like go out and socialise properly with everyone together and it would be a chance for all my close friends from uni and home and my family as well to enjoy a day together and just generally have a good time. I wouldn’t have it as an alcoholic thing, like I would have wine or something with dinner but the idea wouldn’t be to come and get pissed as that’s not what it would be about. Plus I can’t drink and I’m selfish! I would apply for them to pay for the price of the hall, the food and the travelling expenses of anyone coming from far away such as people from uni, obviously I don’t know how much money I’ll get but it should cover most people’s costs. It would be done at a weekend and I would give people plenty of notice. Obviously I can’t invite everyone as much as I would love too but I’ll sort that out nearer the time about who can/couldn’t come etc. But yeh that’s my plan for that. I’m gonna send the form off in the next week or so. Hopefully it should all work out and it gives me something to look forward too as well!

Aside from that I’ve done nothing else today. Think Chemo should start tomorrow or Tuesday latest I would I think so I guess we’ll find out everything in the next few days. I don’t know much about the regime at all really in terms of how long I’m connected to the drip and stuff. I’ll ask tomorrow. Guess I’m slightly nervous about it cos its strong stuff and I dunno how ill I’m gonna feel but to be honest as long as it starts to make my symptoms disappear I’ll cope with the side effects cos I know they are temporary! Hate this whole not being able to breathe properly malarkey! My belly injections continue as well and they still sting but I think I’m getting used to it! The nurses all have different ways of giving them, some put them in slowly which hurts more, others like jab them in like a dart which sounds more painful but actually isn’t!! Just had some lovely oramorph to ensure the back pain stays away overnight! Hate the stuff but it does the trick!

Messages and visits are still appreciated as are texts which I have had plenty of so thanks again! Watched Match of the Day tonight without knowing the scores, shocked by Villa score! That’s the only thing I don’t have here….sky sports! But I can cope without! I’m settled here now and realise this is home for the next 3-4 weeks and I know I couldn’t be at home right now so that’s fine! Anyway that’s me done for tonight. I finish the evening as I started the day, with obs and a blood sugar test!

Night Night xxxxx

Another day on Toghill Ward....

2008-02-02T15:51:00.001-08:00

Its been a another average day here really in the land of My Hospital Room! I had really intense back pain through the night like I mentioned I had yesterday in the day. It’s the tumour pressing on nerves and stuff in my chest but it is SOO painful, I aint gonna lie! I’ve been on constant oramorph (Tastes RANK!) which is a strong painkiller but they tend to like knock me out a bit at a time so I’ll have periods in the day where I can’t keep my eyes open!! It doesn’t take it off but it makes it bearable. They are putting me on some stronger and more regular stuff tomorrow I think so I’m hoping that will help more and stuff though at the moment, without wanting to jinx anything its bearable.

My symptoms are also back with a vengeance because I was only allowed 5 days of steroids so they wore off and my swelling in my face where the tumour is pressing on veins is back, as is the severe breathing difficulties, swallowing is also an effort, not painful just an effort cos of where its pressing! We spoke to the doctor this morning (just the on call one) and because it’s a weekend chemo isn’t starting till Monday so she has given me half the dose of steroids I was on before to help ease my symptoms. I think they are working though obviously it’ll be tomorrow I’ll tell.

I am virtually bedridden at the moment, I need a chair to get to the loo and I am now on oxygen though that is more for comfort than absolutely necessary, like I could manage without it but its far more comfortable with it! I think the scary thing with this is that I know it’s the cancer causing the problems, its not side effects of treatment that I know will improve with time etc, its scarier that the cancer is causing the pain and discomfort really. I mean I know what it is in terms of how its causing it so it doesn’t scare me in that sense but its horrible knowing it’s the disease that causes it. When I;ve felt bad before generally its treatment side effects. And this pain is new, I mean I’ve had it before but never as bad as this.

My line is ok and worked this morning! Woohoo! Such a relief to see it working and everything!! Its still a tad sore but nothing major and its getting easier to put weight on my leg when I do stand up with it. Apparently last night there was some crazy lady on the ward causing havoc, wandering round, I wondered why all the corridor lights were on and there was so much activity cos I was half awake anyway cos of my pain. But apparently she’s discharged herself tonight! Lol so the nurses said they hoped for a quieter night! She wandered into our room earlier and asked if she could phone someone! We were like ‘erm go ask a nurse?’

Nurses were soooo good last night though, they sorted everything out straight away and got the doctors onto it, I can’t credit them enough right now. They stayed with me and comforted me and everything.

My other nan came today which was nice and she treated me normally which is good cos sometimes she can be a bit pitying which I feel weird with but she was fine today. And my little cousins sent me a video message which really made me laugh and smile. And my aunty came too and she was fine, as always and we had a good laugh. I’m eating ok and today’s food was the best so far, chicken for dinner and then chips, beans and sausage for tea. Also managed a good few ham cobs in between!!

I read a blog tonight of a mother whose daughter had cancer called Neuroblastoma, this little girl was only like 4 when diagnosed and then it came back when she was around 7, I couldn’t believe how brave she sounded and how much she’d been through. The cancer isn’t cureable, just treatable and it was amazing how the family seemed to cope! I was so amazed. People have said I cope with things well and everything but I just get on with it, I don’t have a special way of dealing or anything. I find it easier being honest and open with people than bottling things up, I think I would go crazy if I did that! I have hope and I believe in that even though I’m realistic, I think that’s how I have to look at it now. You have to hope but you can allow yourself to be low if you need to be. Hopefully these steroids will keep my moods up too! As well as my appetite!!

I just get scared of moving at the min cos of my back pain but I’m hoping that will ease within next few days or so. I feel ok in myself, not thinking too much about things and making the most of what I can do at the minute. At least Liverpool won a game at last! Woohoo! Still think Rafa should leave though!

Anyways I think its time for a sleeping pill and bedtime!

Night Night xxxx

New Line n PAIN!!!!!!!!!!

2008-02-01T15:07:00.000-08:00

tonight i am lifting this from facebook becos i can barey keep my eyes open and my pain in my back is coming and going like mad (youll understand that when you read on!). i'm waiting for the dr to come n prescribe some more regular oramorph. Credit to the nurses tonight, when i had my pain - no messing stright in on the case and helping me. Reassuring me and everything. Brilliantt. Like i say i will write more tomorrow but soon as ive had this painkiller im off to bed!!!

Well I’ve had my new line in and it was an unusual one! Lol I was waiting for about 2 hours this morning before they came to get me, I was very nervous but not as bad as I was the first time I had it done. I almost fell asleep while I waited! My blood sugar levels were low which meant I had to like put this weird glucose cream in my mouth to give me more sugar in my body – dunno why its important but I guess it must be! I also didn’t eat or drink anything in the morning so I could have sedation during the procedure. Just to help relax me, not knock me out or anything.I got down there about quarter to eleven and about 11 went into the like mini – theatre, like an x-ray room kinda thing with lots of fancy equipment!

Then the doctor came and that’s when they told me that instead of a new line in my chest they were gonna put it in my leg, near my groin area! Sound gross – yeh that’s what I thought!!Its because they think that if they put another one back in my chest the tumour could press on it and stop it working which is what they think caused the other one to stop so one in my leg is much safer if a little weirder!! I was a bit exposed though on the table when I had it done, my trousers round my ankles so the new one could go in and my top down so the old one could come out! Lol so dignified! Luckily it was all women in there with only one guy. I’m quite glad its not in my chest cos now I don’t have to worry about it not working cos of the mass pressing on it so least once I’m used to it in my leg it’ll be better. Just feels a bit weird!!

I had a cannula in my hand so they could put fluids through me as I was a bit dehydrated apparently! That went fine though. I’m getting ok with cannulas now lol, well recently they have gone well anyhow! And then they started. I felt the anaesthetic which was ok, and I felt tugging and discomfort when they put in but it was bearable! They told me I was a calm patient and wanted more like me! Lol though I didn’t feel too calm. After a while the doctor said to me ‘oh gosh I didn’t give you any sedation, I’m sorry, do you want some now or just want me to carry on, I’m ¾ of the way through!’ I had assumed they had put some through my cannula but it wasn’t having the greatest effect! Turns out I had none!! Lol so I was fully awake and alert although obviously I didn’t feel pain cos of the local anaesthetic. So I did it without sedation – quite proud of me really!!

After that one was in, the old one came out and that was more painful, she put lots of local anaesthetic in but I still felt some pain from her pulling the stitches but it was over fairly fast. I was soooooooo glad when it was over!! I saw the old line too! Bit gross! I came out about 12 so I was in there about an hour. I was glad for my dinner!!I was ok afterwards, some soreness now, more aching really, but its not too bad. And I can’t walk very well at the min cos its taking some getting used too and the stitch is kinda rubbing a bit but I should be ok in the next day or so. It all works the same – it’s just hanging out my leg rather than my chest!

LolI’ve had some really bad chest/back pain today from where they think the mass is pressing on a nerve and I had a dizzy spell in the toilet with such intense pain I thought I was gonna pass out. I’ve had the pain before but never as bad. Luckily mum was with me and called the nurse but unluckily I’d started to get changed and was totally undressed when they came in so not the most dignified! Lol, once I’d had some oramorph it eased it a bit but it’s still uncomfortable and I can’t wait for this treatment to start to take it off! I hate feeling dizzy and sick like that, reminds me of when I passed out in asda and it freaks me so much! But I was ok once I was back on the bed and the Dr. is sure it’s nothing serious as such, just the mass pressing on nerves. Painkillers help anyhow! To a certain extent.

So that’s my day, I have had a lot of messages today but obv haven’t had chance to reply though I will try in the next couple of days or so. I feel ok still, pretty tired but then it’s been a long day! Lol. Hopefully should start chemo tomorrow, I haven’t heard for sure yet but I think I will. Dr. Haynes came in while I was having my line fitted and spoke to mum but obv nothing new to report since yday, just said why he’d asked for the line in my leg and also that the search for the donor had been initiated in case we do get that far.

My nan came tonight and she seemed ok, surprised at how calm I was I think but like I say I’ve been so focused on my line today I haven’t thought about anything else really!! She was ok though I think, she tends to live in her own little positive world and I think she’s starting to realise the truth now but I think she feels better for seeing me and speakin to me and I really do appreciate her coming. I saw Claire too, a friend from home (Hi Claire!) which was great though I had my dizzy spell when she was here so I hope I didn’t freak her too much!! But I really enjoyed her coming and it breaks the day up so much and helps me loads. I also saw one of the nurses from downstairs who came to say hello and see how I was doing so again I really appreciated that! But I appreciate everything everyone has said and is doing and I will keep you updated!! Mel xxx

The one with the Bad News....AGAIN!

2008-01-31T15:43:00.000-08:00

So I’m still in hospital as most of you know. I had my meeting with Dr. Haynes and its not good news in all honesty. Some of this is lifted from facebook cos I’m tired and there’s not a whole lot to add. Some stuff is different and added in. Thats me last week sometime.....Bald!

The PET scan results showed that the lump was worse than on the last PET I had, it shows the tumour is growing and its spread. I now have lumps in my belly, around my heart, there is lung involvement apparently and it’s also moving to the other side of my chest. So yeh not good. Before it has always just grown back to what it was before, this time its getting bigger.

So where do I go from here??

Well my central line has decided to be a pain in the arse right when I least needed it and has stopped working, nothing is going in and nothing is coming out! So first thing in the morning this one is coming out and a new one going in. Fun stuff but it needs to be done. I’m nervous cos I hate, well any surgical procedure, no matter how small it may seem but I just keep thinking, once its in, it’s in and I can finally start chemo which I know I need!!

Later tomorrow or maybe Saturday I start my Stem Cell Transplant which is essentially 5-6 days of high dose chemo, they put the stem cells back in on like day 7 and then we wait! My counts will drop and I’ll be prone to infection. Side effects include the usual; hair loss (not an issue anymore), sickness and sore mouth etc. Prob be in hospital for another three weeks minimum. I am having what they term ‘half a transplant’ not the full ‘BEAM’ chemo but the E and M drugs used in that, I think that’s because of the wear and tear on my body and I guess they see that as most effective at the moment.

From this comes 3 potential outcomes:

ONE: it gets a sustainable response for at least a few months (12 weeks min but really longer) enough time for me to find a donor and they and me be ready for the Bone Marrow Transplant. For me to have the BMT this stem cell transplant has to do this, it has to provide a sustainable response. Something that my tumour hasn’t done yet!

TWO: it gets a response for longer than before, maybe 4-6 weeks or so but not long enough to get a donor or enough to have the BMT. So I get some relief and feel better for a while but essentially I don’t get the BMT

THREE: it lasts about 2 weeks, same as before, again no BMT.

Dr. Haynes said he doesn’t want to guess, he would suggest logic says stronger chemo means better response but that hasn’t worked on me so far so we don’t know. He has this way of being so honest with you and making you realise how serious it all is without inducing panic which I think is a rare gift! I really get on with him and I trust him 100% that he's doing EVERYTHING to help me so I can't stress that enough. Same goes for the nurses in hospital, EVERYONE is soooo nice. I just wanted to get that across!

If I don’t get the BMT which in all honesty is likely because I need option 1 to work and that’s the most unlikely one, it will then turn to palliative care. Which means we can’t cure it, we just control it, whether that be with chemo, some radiotherapy I don’t yet know. If I get the BMT it has been explained there is no gurantee of that working but obviously we need to get there first!

After the BMT should I get it, I need to be in remission for like 4-6 months for it to work and also in my kind of lymphoma the cells can disguise themselves or something so the new immune system doesnt attack it which is the whole point of the BMT though obviously that doesn't always happen! Sometimes it works! I have to realise though my chances of a cure now are lower than ever. Not negativity - FACT! Its just how it is and I have to deal with that. I am at the moment but they'll be times when I'll find it hard but I'll keep going and I'll keep believing until I'm told otherwise!!

On another note we were told they can’t use radiotherapy as a curative option because the mass is too spread now and the toxic rays would be too much and too risky and could damage my organs meaning my chances of a BMT should I get there are much more limited.

So that’s the situation. Honest as ever, I’ve told you all the facts. I’m ok at the moment, obviously shocked and upset but I don’t think its hit me yet. I think it’s starting too. I feel like I need to cry to release everything but I can’t bring myself too yet. Maybe the tears will come tomorrow. I sort of want them too in a weird way, I think it will help! I feel like I should be reacting more…I dunno!

I’m not positive anymore, you can’t be in this situation really anymore. I’m not negative but I’m realistic. I know what’s happening, I’m not stupid and it’s not possible to keep my chin up and keep positive anymore, I’m done with that now. I’m being upbeat, I’m hoping it’ll work course I am but I’m done with all the crap of ‘just keep thinking positive and you’ll get there and it’ll help’ cos you know what sometimes it don’t! Sometimes it helps to be miserable and sit there and cry!

I saw Alison today too, my Stem Cell nurse who collected my cells last week. She said she had wanted to come see me but wasn't sure how we'd be feeling with all the bad news but like I said I'd rather see familiar faces and people who know me and can chat to me about stuff. It was such a nice visit, I really did appreciate it!

I love all the messages I get, both texts, on my walls on facebook and in my inbox and they do help. You can leave comments on here too I think but I dunno how! Never be afraid to say anything no matter if you think I’ll be offended, I won’t be. I know how hard it is for everyone to know what to say. Hell I wouldn’t know what to say! I’m also in the Aston Times (uni newspaper) this week though obviously the story is a bit outa date now and I don’t know if it’s accessible online or not.

My dad also writes a blog for anyone who wishes to read how we’re all doing and sometimes it’s a different perspective…well it is! You can access that from this link:

http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=237496223

Thanks again and I hope to see some of you soon, if you ever wanna visit notts hospital in the next three weeks or Burton after that just ask and we’ll try and arrange something.

Ooo I just had some oramorph (painkillers) cos my pain in my chest is soooo annoying and it tasted RANK! Lol as long as it takes this pain off I don’t much care!!! Least being here you can get stuff like that ASAP! I think that’s where I’ll leave it for now, I should get some sleep but I’m not ready yet….I wish my hickman line was all in and done!.....this time tomorrow…..just keep thinking!!!

I went on the lifesite chat-room tonight which is like a chat-room for people affected n who have/had lymphoma and it never fails to help….so thanks to anyone who was in there tonight n is reading this cos I’d never cope without all you lot!!

I’ll let you know how tomorrow goes…..:S

Back in Hospital

2008-01-30T14:23:00.000-08:00

So on Saturday after all the panicking on Friday I was justified so I was back in hospital and kept overnight. I had a CT scan which showed the mass is bigger and growing again which I had kinda gathered seeing as I couldn’t breathe properly, my cough was back and so was my swelling. I was given steroids which are ok and keep my symptoms down to a certain extent but they wont hold it forever. They also make you really high or they can do but they also make you really low which I’ve experienced more than the high if I’m honest. So anyway Dr. Haynes has been off due to family circumstances so I’ve been dealing with Dr. Macmillan, an apt name for a cancer consultant I thought. Anyway I had a cannula for the CT scan but with no problems, my line isn’t working, letting stuff in or out which is worrying but they are going to speak to Dr. Haynes about it tomorrow (Thursday) when we are assured he will be back and come and speak to us.

They also have the Pet scan results I believe so we should know more. I’m very nervous about what they are going to say. It could be a big day, well chances are it will be. I’m back on the ‘bellly injections’ which thin my blood and help the mass pressing on my main arteries, as painful as they are I am grateful for them at the min cos least I know they are helping. And the nurses that do them understand. I have no complainst about the nurses, they are all fantasic and so are all the ward doctors and consultants. The good news is still that I have stem cells which means they have options, bad news is GEMP didn’t work essentially. Well I guess it did, it just didn’t sustain it for long enough.
Oh I had my heart scan and nothing has comeback from it so I think its all ok and my heart rate seems stable right now so I’m praying it stays that way. My problem is my tumour is growing so quickly now, they need to act fast so I think we will deffo see someone tomorrow esp as my steroids are now at an end. I also have to have my blood sugar levels checked cos steroids increase them which mine have. Its fun, they prick your finger to make it bleed and then put the blood on this little machine to check it, it always looked really painful but it really isnt!

My line is worrying me but I guess I’ll know more about that tomorrow. I am in a little room with me and one other lady in it who is nice enough but not very chatty. I enjoy having mum and dad here and bex when she was around. And Gemma coming to visit today was great, I really enjoyed it. I think Claire and my nan’s are coming over the weekend as well so that will be good too. I watched the bill tonight too which was good! Least some TV is alright!

My ‘Steroid Appetite’ is well and truly back, I’m loving yogurts, ham sandwiches and Maltesers especially at the moment! I’ve been doing those Killer Sudoku’s which are really good for killing time but keep frustrating me as I’m so crap at it. I feel ok emotionally, rollercoastery! (if that’s even a word), I can be soooo down but the next min feel ok so its literally a case of taking each minute at a time! I’ve cried a bit but the last 2 days haven’t been too bad. My PET scan was boring as anything but least it split the day up!! And I’ve been getting dressed in the day so I feel a bit more normal too. I’d love some hours at home though with a proper meal and some sky football though with that Liverpool score I’ve just seen maybe a lack of footie isn’t a bad thing! Think I will stay up for match of the day anyway though. I need to wait for my cough medicine till half eleven. Fun stuff.

My routine consists of being woke up at 6am for obs (blood pressure, sats and temp) then sleeping till 8am which is breakfast, waking up for that, having tablets and bed changed. Then I watch some TV or do a puzzle till Mum and dad come. I watched Jeremy Kyle today which was pretty entertaining. The rest of the day is spent waiting for food, eating, checking the net now, sleeping and waiting for consultants. All in all pretty boring. Gosh that depresses me writing it! Maybe I should stop! Tomorrow I hope to access lifesite so I can chat to people.

And here’s to the meeting with Dr. Haynes….scary stuff……

Feeling low

2008-01-25T12:55:00.000-08:00

I feel really crappy now, I don’t know why. I should be happy cos of yesterday but I just feel really low. My cough has got worse and I’m pretty sure I can feel the suffocating feeling I get when the lymphoma is coming back. I’m just paranoid its coming back, I’ve got pain in my chest too which is another symptom. I’m hot and sweaty and I have a headache. Getting up the stairs is harder today than yesterday. I really thought GEMP might do something but maybe it’s just gonna be like all the others, it does something but then it just grows back too quickly….how r they ever gonna get rid of it? I’m beginning to wonder. I've felt ok all day, nans been here and everything so why am I feeling so crappy now. and becky is coming so i feel bad for feeling crap. I want to put on my 'Happy face' but I really don't know if i can. I wish i cud just turn my emotions off. or forget for one day...just one bloody day. One bloody hour.

Sorry I’m being all negative but sometimes I can’t help it. I know my own symptoms now and unfortunately that means I know when its most likely growing and no matter how hard I try to convince myself its ‘energy levels’ deep down I know its probably not that. It’s the lymphoma coming back. I just hope the symptoms don’t get worse before I get any more treatment. If they do get worse I will ring the hospital and they will probs give me some steroids to tide me over. But I hope the GEMP can hold it a little bit, I hope my symptoms don’t get worse. After the high of yesterday I want a nice break from hospital and feeling shit, I want a nice break and feel half normal. I never feel totally normal cos I can't do anything much than walk round the house but you know what I mean. I felt fine all day, i don't know whats suddenly bought this all on.

I had a message on facebook on one of my photos, the one of me on the stem cell machine and it said ‘what on earth is that machine’ I wasn’t impressed, for one the caption explained it all and my group explains why I was on it. I’d been on the thing for 4 hours one day and 5 the other day and had been through a rollercoaster ride of emotions cos of it and someone making such light of it in that insensitive way really bugged me. Maybe its just me. I replied rather blunty explaining but the person didn’t take the hint and continued to ask questions after I’d said everything was fully explained in my group which he then said he didn’t understand. It really gets me that people are so insensitive, i wish he would just READ THE GROUP!!! Its what its there for, I don’t care if he is reading this because it really irritated me. It was an insensitive way of asking what it was and I really don’t even know him that well, if it was a close friend I don’t think I would have minded so much but I really hardly know them. AHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!sorry just frustration.

I’ll probs feel better tomorrow, these moods don’t usually last too long and Becky is coming home which is really good so I want to enjoy that. But she’s had problems with the trains and had to pay 64 quid cos the tickets she prebooked weren’t there and they had no record. And she was upset and i feel bad cos shes only coming bk cos of how I am and its just…………ohhhh I’m just on a downer and being stupid. I'll probably be fine tomorrow. I will be.

My hair is growing back and I have like a skinhead! That’s a positive.
I had a message from an old burton albion footballer on facebook which realy cheered me up and it was nice to hear how he was getting on in NZ and to know he'd seen what had happened and taken the time to say something. and all the messages from friends have been great.
I’m going now cos I’m fed up.
xx

2 milllion Stem Cells!

2008-01-24T14:39:00.000-08:00

Well, its been an eventful coupla days. We got the stem cells collected on Tuesday and I thought ‘yey great’ this is really good. Got there on Wednesday and my line worked, thank goodness which was a huge relief but it did take us an hour and a half to get to hospital! They left ‘Billy Blood drop’ out to greet me on Wednesday morning too! Thats him there.

Anyway after a while Jo, the nurse came in and said that unfortunetley they had only collected 500,000 cells. They needed 2 million and I was predicted to get that in one sitting on the Tuesday or just under but I’d only produced 25% of what they thought. They said Dr. Haynes had been told and that I would stay on the machine for today but there was no point after that and unfortunetley we’d have to look at other options.

So I was absolutely gutted and deflated. I got home and went straight to bed, I just kept thinking, nothing ever goes right for us, when are we going to get some good news. I felt so low and fed up and I did at the hospital too, it was horrible sitting there knowing it was probably for nothing. and the fact that I'd had the needle the day before and was so proud of myself for doing that and getting through it and now it seemed as though it was all for nothing. I went straight to bed like I said. It was only about half 3 but when I'm feeling low all I do is sleep cos then I don't have to think about stuff and it goes away for a few hours....unless I dream about it of course! I sleep alot cos im shattered as well, not always cos I feel like shit! But the two tend to tie in together.

Anyway I got in and went to sleep. About half five dad came in and told me the hospital had rung, with that days collection and the few they got on Tuesday I had managed to produce the required 2 million cells! I have to say I didn’t feel instant delight, my emotions had been played with too much for that, I was mentally exhausted but today I do feel very good about it and I realise how important it is! They can now do a stem cell transplant to hold it until a donor can be found so finally we’ve been given some positive news!! FINALLY!

So that’s all good anyhow. Feel better today emotionally though still a bit on edge but better than I have been. I’m tired still and my breathing isn’t great which is slightly worrying but I’m hoping its down to energy levels rather than the lymphoma pushing on something. I can never really tell. I ache a lot as well, in my back, could be GCSF or could just be random aches. I have like so little energy its hard to tell what is causing what. I hope the GEMP holds the lymphoma till they either do another lot or do whatever they are doing next. I think the most realistic outcome of the PET scan will be that its shrunk it down but not by a great deal, it will prob have grown back a bit. Just hope its not starting already!

That’s not me being negative but realistic and its what the doctors think as well. My PET Scan is Tuesday and my appointment with Dr. Haynes a week after on the Wednesday. Apparently he was thrilled that they had got stem cells as they haven’t done it from GEMP at Nottingham before so I’m a guinea pig!

My taste buds are going all funky again, cant find a drink of squash that I like the flavour of, think summer fruits is the best of a bad bunch. And everytime I take big gulps my stomach feels queasy. Its horrible!

But honestly I do feel a lot better today, sat on my computer all day really and done nothing, well except go on facebook! And now I’m on lifesite which always makes me feel better.

I read a story in Take a break today about someone I know through the Internet who had what I have but hasn't had the complications I have had. They have had RCHOP and are awaiting scan results to see if it has worked. There is no reason to think it hasn't. Their halfway scan showed good progress. The article in theory is a great idea to rasie awareness and everything but it made me feel a bit weird reading it, this lady is lovely and if she's reading this I dont want to offend her or anything cos I'm not her and I dont know how she feels but i just thought the article was very negative and a bit dramatic which probably sounds harsh but when I think to all the complications I have gone through having RCHOP wasn't that bad. I'm not saying it was nice but she was talking about dying and about how if she relapsed there wasnt much more that could be done which isn't true - i'm living proof of that! They can offer radiotherapy, stronger chemo, Stem cell transplants, other treatments, there's loads more options and she had planned her 'last days' and thought about her funeral which when I was on RCHOP I never thought about, it has a 85%+ rate of success and her tumour at the midway stage was shrinking so why should that have stopped?! I just found it a bit strange reading it and maybe i'm being really harsh but i just thought if someone who has just been diagnosed is reading this they would be devastated! I just hope the next part is more positive and uplifting cos from speaking to her I know she is a positive person so I was a bit confused. She has a great chance of a cure. I'm not dramatising my story but my odds are 30% compared to her 90% and I just feel that at those odds, thinking about your funeral isn't the best option! I'd love to be in her position, that sounds strange but I mean in terms of treatment being straightforward and working. I just know I never thought about death or planned my funeral when I was at that stage but hey maybe thats just me....maybe I shouldn't have written this but I have now so whatever....I hope I dont casue offence. Sorry to the person whose article it is, if your reading this and I have. Maybe its just me being a bit selfish and over pitying of my situation, everyone feels differently I guess.

Anyway I’m now going to leave this here for today.

xx

Numbing Cream.....a new revelation!

2008-01-22T12:39:00.001-08:00

Well its been a verrrrrry long day! Left here at 8.15 and got to Notts at 9.20, arrived home tonight about half 6 – 7 o clock. We thought it was just gonna be a simple blood test today and checking counts but turns out my white cell count was 22 and they start checking for stem cells when its above 1! So mine was well high enough. Anyway I was producing stem cells and they put me on the machine! It was all connected through my line and off we went. Thats me on the machine.

However every few minutes it was ‘pinging’ and basically my line wasn’t bleeding enough and at a fast enough rate. After a coupla of hours we had to say ok it’s not happening and the possibility of a needle was talked about. You know my fear about needles!! But I agreed to let them try and they put this numbing cream on my arms and I have to say it was the least painful needle I’ve ever had though according to my dad it was probably the biggest! Anyway once it was in things went really smoothly and I circulated the 12, 000 litres required. Although I did finish a little later than planned! I was on the thing for like 5 and a half hours as opposed to the usual 4!!

I didn’t feel too crappy today sat in hospital, I did when I woke up cos I was so tired but once I was there I just sort of got on with it today! I was given this little cuddly toy blood drop to squeeze to help my veins, it was called Billy blood drop! Lol, and I watched Pretty Woman on the dvd player they gave me so it wasn’t all bad! Thats my lovely needle! not nice is it!!

I was pretty proud of myself with the needle, I just hope if I need one tomorrow it goes as smoothly! Or even better my line works!!! Please please please!!!!

All the nurses were really nice as usual and I spoke to Faith about my heart thing, they aren’t too worried but they are giving me a scan on Monday to double check everything. They think it was probably a reaction to the blood so that’s ok. Feel a little better about it now and I asked all my questions. I didn’t get to see the psychologist today as I had to stay in Notts but we are making a new appointment.

I’m gonna get an early night tonight cos I am shattered and hopefully everything will go ok tomorrow but its really good they’ve made a start on getting stem cells so yey me!!

xx

GCSF Kicks in.....

2008-01-21T13:11:00.001-08:00

I've not posted much recently becasue I've just been too tired. I'm literally waking up at lunctime, having dinner, sleeping again in the afternoon, waking up fo a few hours and going to bed around half 8 - 9. I think Thursday has just taken it out of me completly, mentally and physically. My GCSF injections are 5 days in now and I'm feeling the pain! The aches are back but really thats a good sign as it means I'm more likely to be producing stem cells. We'll know more about that tomorrow when I go into Nottingham for bloods and also my Lymphoma Nurse, Faith, is going to come and talk to us about the heart issues and everything that happened last Thursday. So I'm hoping I'll feel better after that. I like Faith, she seems really nice and I'm sure she'll be able to allay some of my fears.

I feel a little better today though still very tired. And not as positive as I have been but I'm better than the last few days. Tonight has been good, we've watched football with my nan and tried to teach her how to use her mobile which is pretty entertaining in itself!

Liverpool didn't win unfortunetley, not happy with the club really, the owners or the manager! But hey at 2-1 down I would have taken 2-2, though 4 draws in a row in the league isn't good.

Anyway, I'm tired again now so I'll write more tomorrow, I'm seeing the psychologist tomorrow too so that should help things. I feel ok, but just a bit 'on the edge,' like anything could trigger me off on a negative spiral but I've been talking to people on msn tonight and I feel ok so thats an improvement! Just wish I could stay awake for longer than a few hours!!

XX

Trip to A&E

2008-01-19T09:46:00.001-08:00

Well I didn’t write yesterday because I was too exhausted. After I wrote on Thursday night I went onto the lifesite chatroom and was chatting away on there when my heart rate suddenly went up. I could feel my heart racing, like it was jumping out my chest. We rang Notttingham at first and they said they would call back with advice but I got worse and so we ended up calling 999. I felt hot and dizzy and clammy as well. I was terrified.

Anyway the ambulance came and checked my heart rate which peaked at 280, a normal person’s is between 80 – 100! Mine is usually about 120. Anyway they wanted to take me in straight away and so we did, blue lights and everything. Scary.
Once at hospital we were put in a cubicle and they did an ECG and took bloods from me. Though they did use my line which was good.

Then mum and dad were allowed through. I was kept hooked up to the heart monitor. The first thing they did was get me to blow through a syringe but that didn’t work and apparently never does so why they try it I don’t know. I was pretty worked up by this point and upset and scared about what was happening. Then they said they would have to give me a drug to stop my heart momentarily and then restart it again, it was perfectly safe but I would need a cannula in my arm as they didn’t want to use my line cos of infection.

When they told me this my heart rate shot up even more. I hate cannulas, I’m terrified of them, they are just needles into your arm which then they can inject stuff into but I’ve had bad experiences with them and not having them very often kinda makes it worse now. Anyway they put it in, into the my vein in arm where they take blood from so not the most comfortable of places but the doc was good and it worked first time. Thank goodness cos I was so worked up about it, if it had gone wrong they would have needed to sedate me I think!

I was given the drug in the resus room as there are better monitors in there and you can momentarily black out from it. When it went in I got a bad pain in my chest and went all hot and dizzy which they did warn me about. The first dose only worked momentarily so they gave me a higher one which kept it down to about 130ish. They decided to keep me in overnight but there was no beds so I had to stay in a and e in a cubicle but they did find me a proper bed rather than a trolley thing. I didn’t sleep much though and id been up from 7am the previous morning. Mum and dad left at 3am so it was a long night. I hate all the waiting around they make you do in there.

At 5am I woke up with a temperature and they wanted me to have a chest x-ray so I was wheeled off to have that about 5.15am. I finally got a coupla of broken hours sleep before 8.30am when mum and dad came back with the Burton hematology team who know me and my condition unlike the a and e doctors.
They said I cud go home. They don’t know what caused it, maybe a reaction to the blood or previous chemos...but I’m in Nottingham on Tuesday and they are aware of the situation, they will probably do a scan of my heart to check everything is ok.
I’m now just mentally and physically exhausted. I’ve slept all day yesterday and all last night and the best part of this morning. I’m so tired. Its things like this that give you a reality check, I’ve been so well for 2 weeks you’d almost forget I was ill but then something like this happens and it brings it all home. It makes me want to give up at time, it really does, sat in a and e I just thought, I can’t take any more of this, what else will go wrong, how am I supposed to deal with everything that keeps happening?! I know I will carry on and I won’t give up but it really does make you wonder at times. I feel quite low at the moment cos of everything that’s happened in the last 2 days or so but I guess I’ll pick up again soon. I bloody hope so anyway. I’m exhausted which isn’t helping matters.

I’m also terrified it’s going to happen again and I can’t help that though I’m trying to relax and not let it worry me. I’ll feel better on Tuesday when I’ve spoken to my own doctors. That’s the problem with A&E, they can treat the immediate problem which is great but they don’t understand the background or anything about my condition! And it’s so frustrating that they don’t know me! I just don’t have any trust in them at all really. I had to talk the doctor through how to take blood from my line and how to clamp it and everything! Reassuring?! Not. I just don’t have the trust in them that I do in the hematology team. When Dr. Ahmed came on Friday morning I had complete faith in what he was telling me! Cos he knows me and he understands what’s really wrong with me. All the staff in A&E are nice don’t get me wrong I just don’t trust them totally!

Anyway I’m signing off here for tonight, I’m still soooo tired. I saw my nan’s yesterday but ended up going to bed while they were here, I managed to stay awake for my cousins today and them being here took my mind off everything which was good but I’m tired again now….so night night xxx

The Longest Day EVER

2008-01-17T13:13:00.000-08:00

So I spent the whole day today at hospital. I didn’t sleep well last night at all and kept waking up every few hours even though I was shattered! It happens sometimes, I dunno why, sometimes I’m not even thinking about stuff to do with the cancer but I get random stupid thoughts going round in my head, like about something I’ve watched on tele or something. But anyway I had to be up at 7am to get ready to go to hospital. We left at 8am and 11 hours later we came home! 7pm tonight!

It was such a BORING day. I hate it. We had to wait 2 hours before they even started the bloods cos they weren’t ready for me, then it takes 2 and a half hours per bag and I had 2 bags, then I had to have my injection, my dressing done and an xray so it was 6 by the time we left and 7 when we got in. I did watch a film which killed some time but I was constantly clock watching. And I find I can’t eat properly when I’m in there, its stupid!

The staff are so nice though and all the nurses make you feel welcome and sort everything out for you. We have one nurse in particular at the min called Alison who is really great, she sorts out everything and if something goes slightly wrong she spends ages apologising! It’s not even her fault! Just one of those things like the blood not being ready and stuff. It just gets depressing when your one of the first ones in but the last one out! I read some of my magazine and chatted to mum as well and I tried to sleep but failed. Hopefully that means I’ll sleep tonight. I bloody hope so. I hate not sleeping.

Me and mum chatted for a bit today about what happens if the treatment doesn’t work and stuff and we said its hard for people to contemplate that. But like we said if it happened we’d adjust and we’d deal with it and its something I will discuss with the psychologist, we’ve already mentioned it once. I think its hard for other people to understand though and try to get their heads round it, well it would be wouldn’t it! I think its better to talk about it though than pretend its might not ever happen cos one day it might, I’m not stupid, I know the odds are against me but you have to believe that you’re going to be in that small percentage that do make it through!

I’m sooo tired tonight, I hope this blood kicks in tomorrow and gives me some more energy! Both my nan’s are visiting which will be nice and then on Saturday my cousins are coming. Dad picked up the new car today which is very nice I have to say.

Anyway I’m too tired to write anymore so I’m going to leave it there for now….

Wishing they would put decent games on TV

2008-01-16T13:32:00.000-08:00

So now I’m writing a normal blog. Hopefully I’ll update everyday but obviously there’ll be times when I won’t be bothered or if I’m in hospital though I'll try keep a diary and update when I can.

I’m watching football at the min and its pretty shit! All the other games seem to have goals, just not the one they are showing on BBC! I’ve got to have a blood transfusion tomorrow and I’m not really looking forward to another long day in hospital with no internet and nothing much to do. I can’t focus on a book so I’m limited to DVD’s and listening to music. I could sleep I guess….

Although then I wouldn’t sleep at night. I feel pretty tired right now actually, probably a combination of a sleep deprived night in hospital and the blood counts being low. Might have an x-ray tomorrow too. And of course my first GCSF injection, that’ll be fun…To be fair the actual injection is ok, it’s the side effects I hate, all the aching and stuff!

I talked to Prina on the phone tonight which was nice, I lived with Prina in first year and its been a while since we talked so it was good. Sometimes I’m more in the mood to talk than others and today I was so it was all ok. Its just sometimes I can’t be bothered to go through everything but tonight I was in a talking mood so it worked out well! Everyone always say I cope really well and they wouldn't cope with it like I have but I think you do, i think when your faced with something like this you just get on with it and you have to take each day or bit at a time. I don't think about coping, believe me I have my bad days. It's strange, I don't know how I've coped really, I dunno if I have really!

I’ve done nothing today except write the updates for this blog, I feel like I’ve relived the last 6 months! Lol. Its crazy really what’s happened and at the minute there is no end….I have no idea when or if I’ll get fully better and if I do when it’ll be, in a year, 2 years, 6 or 7 months? It’s just a total unknown but if I think about that too much I’ll go crazy myself so I won’t! I just have to try and take each day as it comes, hard as that is sometimes.

Sarah and Hannah and Carol might come on Saturday so that’ll be good and both the Nans are coming on Friday all being well so that will also be alright, though hard work I’m sure explaining everything to them! Sarah, Hannah and Carol won’t be hard work, I know that! It’s just my Nans that need the constant reassurance and the knowledge of what’s happening.

My mum reckons my hair is growing back too! I know my eyebrows are! I ordered some more buffs today which is cool, I live in those at the moment. Well Havant are through to the next round of the FA cup and play my team, Liverpool! What a tie that is for Havant though, awesome result for them! It's great really! And Newcastle are 4-0 up! Amazing what the annoucement of a new manager will do for you! City - West Ham remains the most boring game ever though at least we've had a goal now! 3 minutes left to endure.....ooo a fight now! Well kinda...no cards though :(

Anyway I’m feeling really tired so I’m going to leave it there for today….. I might take my laptop to hospital tomorrow and write this on word and then just post it when I get home or something.....give me something to do! Oh and the game has finished, 1-0 to City - Boring game.
Night x

My Friends and Family

2008-01-16T13:09:00.000-08:00

I have had fantastic support from everyone, my family and all my friends, right from the start and I’ve enjoyed the visits from everyone and the messages I’ve had have been great. It really helps to keep my spirits up especially when I’m feeling low. I know it must be hard for my friends sometimes to know what to say and to know how to deal with this but apart from saying ‘keep positive’ which I don’t like there’s nothing that will offend me if its said with the right intentions which everything always is. Last Saturday Hammad came to see me and I really enjoyed the whole day and catching up on everything, it really lifted my spirits which visits from friends always do!

I’ve had visits from lots of other people as well, most recently, Dan, Phil, Rachel, Dave, Sooty and like I said, Hammad last Saturday. I’ve also had visits from Abby and Laura from Burton. I’ve really enjoyed seeing everyone and it’s been good to catch up on everything.

I think its harder for some people to talk to me about what’s wrong with me and to say the word cancer but I’m never going to say ‘shut up I don’t want to talk about it’ I will always answer questions and be happy to discuss things cos I know I’d want to know if it was the other way round.

I do talk to people who suffer with the same thing as me and people who have recovered from it. The life-site chat room is somewhere I find really useful and always come out feeling more positive than when I went in. It’s a place that people with all kinds of lymphomas can go and chat to each other and I’ve made some good friends. I also talk to a psychologist regualarly which helps alot.

My family have been really supportive, my mum, dad and sister especially and I find it easy to talk to them about everything. They have done everything for me the last few months and I can’t thank them enough. My grandparents the same really though I sometimes find them more difficult to deal with as one is really overly optimist and unrealistic at times whereas the other is the opposite and is very pessimistic! It’s hard to find the balance!

Anyway that brings me totally up to date and from now on this will be a normal blog…..

Fertility and Chemotherapy

2008-01-16T11:26:00.000-08:00

When I first started chemotherapy I was told my ability to have children could be affected but that it was a maybe. I didn't think too much about it. I was too worried about me!! Since then I’ve had more intensive chemo which is very likely to have destroyed my chances of having children, if I get the bone marrow transplant that will almost certainly mean I will never be a mum. Well not in the natural way anyway! Even if i just had the Stem Cell Transplant it will almost certainly destroy any chances of me having children as well.

It’s something I wanted to put on here but I haven’t given it too much thought. It’s a huge deal and it’s upsetting and sometimes you think ‘one day when I have kids’ but then I realize ‘oh actually…’ and that’s when it hits you, how much this cancer changes your life. I haven’t thought about it too much because I have to get me right first before I can think about that!

Maybe I’ll be able to adopt or foster, that’s how I look at it, in a positive way but it is sad that I’ll probably never have children of my own. I guess it’s a price I will have to pay but if I can get right then I will be ok with that.

I had the option of freezing my eggs but it was too risky to delay treatment and unless you freeze embryos, the chances of getting a result are minimal. Its much easier if you have a partner or if you’re a guy! Lol but it wasn’t to be I guess….
When I was at the football I saw this little baby and I thought ‘ahhh bless’ and it kinda hit me then too…but I guess it will every now and again…it’s just how it is now.

Anyway that’s all I wanted to say on that really….I’ve just never really spoke about it before so….

Further Treatment Options....

2008-01-16T11:13:00.001-08:00

Anyway while we were in hospital we saw Dr. Haynes, my consultant. He said the delay in treatment wouldn't have caused any lasting effects and the returning symptoms could be due to a number of things and he didn’t seem too worried. In fact after today’s phone call saying I need a blood transfusion tomorrow I think it was probably more due to my counts being low than the lymphoma which is a relief!

He explained there are now 3 scenarios arising from the GEM-P treatment:

1. It has worked really well and shrunk the tumor down a lot

2. It has partially worked and has shrunk it down a reasonable amount

3. It hasn't worked at all

Out of the 3 option 2 is the most likely, option one isn't that likely and option 3, although a possibility due to how well I've been feeling is unlikely too.They plan to give me at least another cycle of this GEMP chemo, possibility 2 more. But this will happen after they have attempted to get stem cells. After the second cycle they will do a PET scan to access the situation.

Now there are 4 options available from these 3 scenarios.

1. GEMP has worked well. They manage to get stem cells form this cycle. They will then give me the 2 more and these 3 cycles together manage to shrink the tumor right down, enough to hold the disease until they can get a donor and do the bone marrow transplant.

2. The GEMP cycles work partially, shrinking down the tumor to a reasonable size. They successfully get stem cells after the first cycle. They then use these stem cells in order to give me a stem cell transplant (so high dose chemo then put stem cells back into me) to hold the disease until a donor is found and ready and I am also ready for the Bone marrow transplant.

3. The GEMP cycle works partially and shrinks down the tumor to a reasonable size but the disease starts growing back - and they CAN’T get stem cells. In this scenario they abandon the stem cell option and instead would give me ‘mini-beam’ which is a type of intensive chemo- if the chemo they give you in stem cell transplant is 10/10, this is 9.5/10 BUT although it would wreck my stem cells so they wouldn’t be able to collect them you don’t need to put stem cells back in me to recover from this. So essentially its just really strong chemo! And this would hopefully again hold the disease until the donor and I am ready for a BMT.

4. The GEMP doesn’t really work that well and/or they try the mini -beam or the SCT and neither of those are very successful they would give me Radiotherapy but this is a last resort due to the risk of further cancers in the future and the damage it could cause to my organs later in life because of where my tumor is! Again the idea is to hold it until I can get a BMT

So they are now the 4 options, all leading hopefully to a bone marrow transplant. Obviously things need to start going to plan to get there! Options 2 and 3 are the more likely. Option one isn't very likely and although option 4 could happen they want to try and avoid it! They are going to do a chest x-ray soon as well, maybe tomorrow or Friday just to see if there is any change but they said if there isn’t not too worry too much cos it could have shrunk in the inside or something not from the outside. The doctor agreed it must be doing something to make me feel so well!!

That’s the situation as it stands at the moment anyway…..there’s just a couple of posts left until I’m up to date totally…

The plan for the next few weeks....

2008-01-16T11:02:00.000-08:00

About a week or so ago we found out Becky wasn’t a match for the Bone Marrow Transplant. This means I will now go to the register to find a match. There is a good chance we will find someone though.
The staff at Nottingham have generally been fantastic, we were given some bad advice regarding temperature one night but we think it was a young SHO who wasn’t clear on the protocol and it has since been sorted anyhow. I had a temperature last Thursday but it was a minor scare and I was fine the next day.

Now I have had my first cycle of GEM-P they want to collect stem cells.Basically stem cells are the building blocks of your blood cells, they can turn into red cells or white cells or platelets - whatever you need, so if you cut yourself your stem cells form platelets to replace the ones you lose (i think its platelets anyhow if memeory serves me right!). They want to collect my stem cells in order to allow them to give me high dose chemotherapy which would blast the tumour but the chemo would destory all my stem cells so after they've given it they then return my stem cells to me and they help my system to recover and get back to normal though it takes a few weeks or so. You are also at risk of infection during this time.

However they haven't ever collected stem cells off the back of this GEMP chemo I’m having. They know it has been done and there has been success with it but they haven’t got any detailed literature on it. they have been ringing london hospitals inc the Marsden one (they tried ringing the day it was on fire apparently!) to try and find out at what stage my body would start making stem cells after this chemo has finished but they haven’t been able to find out much. So basically we play blind! Obviously they can base decisions on other regimes that they collect stem cells from and they have a rough idea but really its guesswork. They are hopeful they will be able to get stem cells, they see no reason why not.

So now I will go back and forth to Nottingham 2 or 3 times a week to have bloods done, they will then decide from these results what to do at each stage. I go in tomorrow for a blood transfusion as my counts have dropped and they will start checking things from then. I will also start on GCSF injections tomorrow all being well. They are just small injections into the stomach every day for about a week. They stimulate your bone marrow to make white cells which when they go up I should make stem cells too - that’s the hope anyway, as my white count goes up my body starts producing stem cells. If my white count goes up but I am not producing stem cells that’s when they will have to say ‘well actually this isn’t going to work and will look at other options but because I have had pain with GCSF injections in the past they say that is a good sign as patients who get pain (its horrible i tell u - aching and flu like symptoms but hey small price to pay and I can take codeine to ease pain) usually produce plenty of stem cells so that’s a good sign!When my counts are high enough (white count has to be above 1 I think) they will test to see if there are any stem cells in my blood stream (just a normal blood sample from my line) and once they find some then they connect me up to this fancy looking machine.

I am on it for about 4 hours and it basically circulates your blood round twice and takes the stem cells out of it n puts the rest back in. The main thing is that its boring! they said they don’t know how many times I will go on the machine, depends how many stem cells they get the first time, if its not enough I go back on and so on until they have enough. I been told they can use my line to connect it and everything so that’s cool.The stem cell transplant will essentially be a holding thing until I can get the bone marrow transplant but potentially it could hold it for some time so if they can do it it will be a very positive sign. By collecting my stem cells it will enable them to give me much stronger chemo which obviously will stand more chance of getting rid of the tumor.

So that brings us up to date with the plan for the next few weeks, when I was in hospital I saw Dr. Haynes again and he explained what would happen after this so that is in the next post….

GEM-P Chemotherapy

2008-01-16T10:48:00.000-08:00

So I started my GEMP chemotherapy just after Christmas. It’s a 2 week cycle and the last part is as an inpatient. I had minimal side effects, no sickness, some dry and sore skin on my hands and some flu like symptoms after the second lot of Gemcitabine. The last few weeks have been good in fact. This chemo has made me feel better than I have done in a long long time. I managed to go shopping round Derby on New years Day, although I was in a wheelchair it was great to get out. Thats my drip when in hospital!

I also managed to go to a football game at Burton Albion, also in a wheelchair, that wasn’t as great. I liked the game and we were treated great by the club but I didn’t enjoy seeing people I knew and being in a wheelchair, it felt weird and not everyone treats you normally, some people did but not everyone and I felt strange. I won’t be doing it again until I can stand up or sit down in the crowd normally. Thats me the other day.

However a week later I was out of the wheelchair and am no longer using it, I could walk around quite well for me and managed a walk to the shop though it did tire me out!

Chemo days aren’t great, they are boring and I always get a bit down being in there but everyone is nice and friendly and you just have to get through it.
Last Friday I was meant to have Day 15 but they couldn’t find me a bed so it was delayed until Monday. Monday was a shit day. We were waiting all day for a bed, I felt ill, in terms of my breathing had gone downhill and I had the mother of all headaches! I was paranoid my symtpoms were coming back and I was very scared. Any detioration seems big now because I’ve ben so well!

Anyway 4 o clock on Monday we got to Nottingham and into my room. We were waiting for 2 hours before a nurse came and I finally got some pain relief for my headache. Once I'd been booked in and the doctor had come (about 9.30ish) then they wanted me to have an ECG as my heart was racing which I tried telling them it always does but they wanted to check. Anyway it came back fine. I finally started my chemo about 11pm after arriving at 4 n waiting all day. I had a one hour bag of Gemcitabine (chemo) followed by a 3 hour bag of fluids, followed by another hour long bag of stuff that I can't remember the name of but it made me want to go to the toilet anyway! Anyway that bought us to about 4am and then i had the Cisplatin (chemo drug) for 4 hours followed by 12 hours (yes 12 HOURS) worth of fluids. I finally left hospital at about half 9 last night getting home at half 10 just in time to watch Match of the day and crash out in bed. I had virtually no sleep in hospital cos they kept coming in and changing the bags of stuff over, plus I had to keep going toilet with all the damn fluids they were putting in me!! That pic is my mum in hospital!

I watched Green Street and High School Musical 2 with mum and dad and it was a long day but we got through in the end!!

That’s pretty much everything up to date, though there are a few more posts which will explain the plan for now on and some random stuff I wanna chat about before I start my proper blog…

Boxing Day and New Years....not the best...

2008-01-16T10:33:00.000-08:00

On Boxing day me and Becky sat downstairs playing on our computers when we were told that our Granddad, who I mentioned previously had been ill for some time had been taken into hospital and had died. His breathing problems had essentially got too much and they couldn’t save him. My mum went to the hospital with my dad, my Nan and her sister and brother (my aunty and uncle). Thats my nan and granddad during Christmas 2006, a year ago.

It was an awful thing to happen but not totally unexpected in some ways. It was hard for me to deal with, I couldn’t think about it with everything else that was going on and I shut it to the back of my mind and tried my hardest not to think about it until the day of the funeral…2 weeks later. I did sometimes think about it and I miss my Granddad a lot, I’ve become close to him in the last few years especially since I started uni and he used to enjoy looking at my photos and hearing stories of what we’d all been up too. I was also sad for my nan as she was now totally alone though we see much more of her now, as she was always constantly caring for my Granddad before.

The funeral was hard and I cried, a lot. I was able to go though thankfully and I was also able to go afterwards to my aunties house once a lot of people had left as I was prone to infection that week so we waited until the majority of people had gone. I talked to the psychologist about it and that helped. But I still feel in a way I havent; dealt with it yet but I can’t properly even now because one negative thought leads to more and I can’t let myself go down that road.

Of course I think about my granddad but I can’t let myself properly freely think about it because its too hard. That’s probably cowardly and sounds silly but it’s my way of dealing with it right now and its how I’ve dealt with it up to now. One day I’ll let myself think about it and about him and about everything but now isn’t that time. I think my mum is ok, I think she found it hard obviously but things are pretty much as normal as you get in our house at the minute, I know she finds it hard but I think we’re all ok.
New Years was also difficult, my Nan was here which was nice but at the same time you can’t help thinking again ‘where will we be next year’ and all the stupid chain texts you get didn’t help me feel better to be honest. My new year wasn’t great and I was petrified about what 2008 might bring, not particularly looking forward to it to be honest! And reflecting on 2007 wasn’t really what I wanted either especially the last 6 months! I had a few nice, personal texts that I was fine with but to be honest it wasn’t the greatest New Year. I had no choice but to stay in and watch TV, I couldn’t go out and get drunk or anything so it was pretty boring. It was nice spending it with the family but it was still quite hard to get through. And the days after when everyone asks how it was….what do you say…?

So that was my Christmas and New year….not the greatest I’ve had I have to say….

Meeting Dr. Haynes

2008-01-16T09:47:00.001-08:00

This is virtually lifted from my face book site but it explains it the best so I may as well use it! That is me on Christmas Day, before the Steriods took hold and made me fat!

My tumor is a sizeable one, I’ve always known that, football sized they told us to start with and all the chemo so far had failed. Dr. Haynes reiterated this to us on Christmas Eve 2007. He said he was worried. 80% of people respond to RCHOP, 85% of people respond to IVE if they don’t respond to RCHOP. I had responded to neither. The 5 year survival rate for people who responded to RCHOP was 90%+, for those that didn’t, that survival rate dropped, essentially my chance of a cure, dropped down to 20%, this went up to 30% if I could get a Bone Marrow Transplant (BMT). Not good odds. Thats me and Becky on Christmas Day.

When I met with Dr. Haynes my symptoms were all back. He gave me some high dose steroids (20 tablets a day plus all my others!) to get me through Christmas as I didn’t want to start treatment during Christmas and he agreed that it would be good to spend Christmas at home. Nottingham is one of the best Lymphoma centers in the country and the staff and consultants are second to none.

The doctor said, he works on everyone elses difficult cases and mine was a difficult one in comparison to them. He was pleased at how together I was and how I took the news but to be honest I think I was just in shock! He gave the NHL a very specific name, one that’s more prevalent in women than men and also in people under 40 but the name itself passed us by in all the info!

Next he explained the plan from then on….it was to start on GEMP, new drugs, new regime. I would have the Gemcitabine the following Friday as an outpatient, the same the Friday after that and on Day 15 I would have the Gemcitabine followed by the Cisplatin along with a lot of fluids and I would need to stay in hospital overnight for this part. I also had steroids as part of this regime and they kept my awake a lot and coming off them can be annoying as you can get mood swings. We were told this regime on me had a 50% chance of working. I also had a blood transfusion with my first lot of Gemcitabine as my counts were low. It was no big deal, I sat in a chair and they put blood through a drip. Boring really!

The plan was to collect stem cells from the GEMP, even if the GEMP didn’t work but they got Stem cells it would be a positive thing! A stem cell collection is just like collecting blood which then goes through a machine – takes out my stem cells and puts everything else back into me. No pain – just boring as it takes 4 hours and you can’t be unhooked! This would be done after the 2 week cycle when I am producing enough stem cells. The pic is me, dad and becky messing around with my Buffs sometime in the Christmas Holidays.

My only chance of a cure now is a bone marrow transplant using someone else’s bone marrow. Ideally this would be my sibling – in my case my sister Becky and she was tested immediately. It is safer and less risky if it’s a sibling but there’s only a 1 in 4 (25%) chance of her being that match. If she wasn’t a match we were told we would go to the national register. There was a good chance of finding someone on there. In the meantime they could give me a stem cell transplant using my own cells or if they can’t collect any from me for a number of reasons use someone else’s or give me high dose chemo. This wouldn’t offer a cure and I would almost certainly relapse but it would buy them time to find a donor if Becky isn’t a match. They can also use different kinds of chemo and high dose chemo which would blast my tumor but would destroy my stem cells and at that time they don’t want to do that but they were alternative options.

We were told on that day that they are still aiming to cure the cancer. If you get to 5 years in remission (no sign on cancer in the body and none for the previous 5 years) they can class you as cured. If they can’t get a cure they can offer what they call palliative care which is treatment to control the disease for some time, essentially different types of chemo etc - eventually the disease will overcome this and that is when they turn to just controlling any symptoms I have which is essentially a terminal prognosis. Scary stuff. Lets hope we never get here. I guess though u never know. I could be cured, I could not be - It’s a gamble. And it is something you think about – you cant help it.. I cried a lot but I think the steroids helped keep my spirits up at the time. Also I am positive, you can’t be all the time, its impossible but I was positive at the time.

I posted the following on an update to my friends at the time when I was told all of this regarding positivity:

Although I absolutely 100% appreciate all the messages from people please try not to say ‘Keep positive or keep your chin up’ because I hear this everyday from lots of different people and I already know this and to be honest it gets to the point where I get annoyed and I really don’t want to get annoyed with people especially when its not their fault. If you’ve said in the past don’t think I’ve been offended – chances are I haven’t – it’s just that nowadays its something EVERYONE says and it gets irritating! I need to be honest with people because that’s the only way I can be. If you don’t know what to say tell me! I would much rather hear ‘I don’t know what to say’ than something that doesn’t make sense or nothing at all. And if u feel too uncomfortable saying anything that’s fine. I’m not going to get offended or anything! With regards to uni, this is when I really decided that I probably wouldn’t be returning in September and I told my friends this. I may return in the future but I don’t know if I will and I have no idea when. Its something I can’t decide right now and I will have to decide when the time is right. That pic is me with my covering of hair before it all came out and grew back all stubbly like it is now!

So that brings me up to Christmas Day which in the circumstances was ok, it was a little bit weird cos you can’t help thinking ‘where will we be this time next year’ but it was a nice family day, I saw my Nan and Granddad. Although my Granddad wasn’t too well. He had emphysema and has been ill for a while but he’d been ok but a few days earlier had developed a thrush infection so he wasn’t too well when we saw him but it was good to see him all the same. Also Becky was home for 4 weeks which was brilliant and I miss her now she’s gone back to uni. But Christmas Day itself was nice. We watched tele, opened presents, ate Christmas dinner and I got my taste for chocolate back! Thats me and Becky posing one day in the holidays.

But Boxing day came and with it more bad news…though it was nothing to do with my illness…

Yet more bad news....IVE has failed...

2008-01-16T09:18:00.000-08:00

Well, after waiting for a week or so we’d heard nothing, we kept ringing the hospital but nothing happened, they kept saying they’d get back to us but when they did they knew nothing and didn’t have an appointment for us.

I started panicking, last time we were kept waiting, it was bad news and I was paranoid the same would happen. I didn’t feel any better, was I supposed to be? My cough was coming back too which scared the hell out of me…

Anyway eventually we got a phone call. We had an appointment with Dr. Smith at 11.30am on the Friday before Christmas. I also had Hickman line care and bloods.
In our appointment we were told yet more bad news. IVE had failed. I would not be having any more of it as it was pointless. I saw two x-rays, one from August and one from a week or so before. There was virtually no change. I almost cried but I held the tears back and they didn’t come for a few days afterwards. I think I was in shock. Dr. Smith said he was worried. Dr. Haynes, the big lymphoma specialist at Nottingham was worried. Hell I was worried!! I was now going to be put under his care and everything from now on was going to be done at Nottingham.

The plan was now to try something called GEMP which Dr. Smith had to Google to find out about, that’s how often he has had to use it!! We didn’t know anything about it really, we weren’t even sure if it was an inpatient or outpatient treatment. We knew it was out of Burton’s league and Dr. Smith said he didn’t think Derby would do it either so it was down to Nottingham and Dr. Haynes.

The tumour was resisting all the chemo we had thrown at it and so they had to try something totally different. The drugs in GEMP were in a different category to everything else.

I was in shock for a few days I think and I didn’t really want to talk about it too much at first though I did eventually. It was a tough time and just before Christmas wasn’t the greatest timing.

By this point I had had no treatment for over 4 weeks and my symptoms were rapidly returning, the cough, the breathing, the suffocating in my face, headaches….everything was coming back and we were worried….i wasn't eating well, just chicken mainly! And I had no taste for chocolate....or tea and I hadn't since I'd come out of hospital with the IVE. The pic is of Nottingham City Hospital, the main bit but we go to the Hemotology suite.

We got a phone call on Christmas eve morning to say could we come over to Nottingham ASAP to meet with Dr. Haynes….so off we drove….an hour later we were in the day-case unit…

Clinic....Derby and Burton

2008-01-16T07:55:00.000-08:00

After my IVE I went into clinic about a week or so later. This was in Derby’s day case unit. When I got there they didn’t seem to realise I was there for Hickman line care and tried to take blood the normal way! They also said unless I was having Hickman line care I could expect blood to be taken in the normal way as it took too long to do it through the line. I was upset as I had been told before I had my line in that bloods could be done through it every time and it would make my life easier! They also wouldn’t allow mum and dad to be in the room with me while they did bloods, hickman line care and took my stitch out so I wasn’t impressed!

When we asked about the Hickman line packs and instructions for the district nurse which we had been told that normally they could do, we were told that actually that was too much paperwork and I would have to come into the derby hospital clininc once every week just to have my Hickman line flushed (to check its working) and blood taken. A 5 minute job and a half hour drive.

I was not impressed and i told them so. I think I got to the point where I was so sick of being told one thing and then something else happening, even minor things irritated me and I told them so! The nurse I dealt with was so hot and cold, one minute she was all sweetness and light and really nice, the next she was moaning at me because I cant inject myself with the GCSF injections (her comment being 'well what would you do if you were diabetic? - good for me I‘m not so why should I worry!!). After this the nurse then kept telling us how when I had my stem cell transplant I would be back and forth from Nottingham and I should get used to it - she didn’t seem to understand that wasn;t our issue!! It just seemed silly traveling all the way to derby for something that could be done at burton or even, if they’d got their act together at home.

Anyway I let my feelings be known to them, something I’d not done before and I have to say I felt better for it. As a result I managed to persuade them that I could go into Burton for the aftercare which wasn’t ideal compared to the nurse at home doing it but was better than going over to Derby every week and it was with people who I knew and liked and got on with.

I do get worked up sometimes and that was a classic example when little things don’t go to plan it really upsets things. The organization somewhere had cocked up and it was me that paid for it. So overall I wasn’t impressed with the day-case centre at Derby though the ward staff were fantastic.

The second appointment the following week was therefore at Burton and all went ok, I had a small wobble where I went a bit faint, probably from overdoing things a bit but I had felt not too bad! I was checked over and was fine. I had an x-ray anyway and was sent away knowing that I would hear from the doctor within a week or so. This would tell us what the effect of IVE had been and when my next dates for the second round were.

IVE and Recovering

2008-01-16T07:42:00.001-08:00

I started my IVE the same day as my line was put in I think from what I remember! Anyway it all seemed to go ok for the first few days. I was on ward with other people, none of them particularly young but all ok. Although on the first night I had this woman who had a different kind of blood cancer to me but she only had 2 years to live and kept talking about this! And also about her husband who had killed himself. Which was thrilling stuff to be hearing about on your first night! Needless to say I was sympathetic to her but what do you say to someone who tells you all this?! And on your first night when your pretty scared anyway!! But aside from that there was a lovely old lady called Margaret who was very ill at first but by the time I left she was well on the mend. And a lady called Sue who was bed ridden but again very nice. I was moved wards after a day or so but was with the same people bar sue plus another lady whose name I didn’t know and a young girl who was only in for one night and was a bit odd! There was some kind of bug going round on the ward so they moved everyone and deep cleaned everywhere!

The IVE was connected to me 24/7 for 5 days. So I was constantly on a drip which I did kinda get used too. The first few days passed by fine and I felt okish, was able to get up and use the toilet on my own and get around fairly well. But by the third day, the Thursday I think it was I started aching all over and feeling really weak, I was then sick, quite a bit and was exhausted and I don’t mean exhausted like you normally feel, I mean exhausted like I have never felt before, to the point where I was lying down with my drink on the table next to me and I didn’t have the energy to reach and get it. I was barely eating at this point and was put on a food chart as well as a fluid chart. I saw the dietician and was given more forti-juice to help me get the nutrients I wanted but I got the point where I couldn’t even drink those. I also saw the psychologist when I was in there but when I was feeling well, I now see her regularly as it helps.

By the Sunday I had improved slightly but I was still very weak, however the doctors said it was ok for me to go home once my chemo had finished that day and so I did. Not entirely convinced I should be going home but I was so sick of hospital I had to get out of there! Plus the ward was potentially riddled with infection and I think they wanted me out of there asap!!

Once I was home I was pretty much sleeping most of the day, I was really weak and mum and dad had to do pretty much everything for me. It was probably the worst time we had really. Slowly I began to improve but I didn’t ever feel any better than when I went into hospital and I started to wonder if this was a bad sign….

And in goes the Central Line....

2008-01-16T05:41:00.000-08:00

So on November 26th 2007 I went into Derby Hospital. When we got there we were told to wait in a little side room while they sorted stuff out. I was in a right state as I was so nervous about what was going to be happening. I think I cried straight for the whole journey and while we were waiting. Anyway after about an hour we were told that my Hickman line wasn’t due to be put in until the following day (Tuesday 27th) so in fact I could go home until 9am the following day and things would progress from there. Well that Monday was probably one of the worst days I’ve had, I spent the whole day in tears, paranoid about what was going to happen or if this didn’t work and I was petrified about having my Hickman line put in. You aren’t put to sleep for it but you do go into like a type of mini theatre. You are given sedation but I remembered from my bronchoscapy that I was totally aware of everything. You are given a local anaesthetic to numb the area but I was still so scared! Anyway I think that day helped in a way as when I went in on the Tuesday I was much more relaxed, knew more what to expect and although was still terrified coped with it a whole lot better!

WHAT IS A CENTRAL LINE?

Anyway if you are wondering a central line or Hickman line is a line which is inserted under the skin of your chest into a vein and the top of the tube sits in a large vein just above your heart. The space in the middle of the tube is called the lumen. The tube can have two or three lumens but mine has two. At the end of the tube outside the body each lumen has a special cap and this is what they attach the drip or syringe too. My line is actually quite a broad one, not a thin one like what are more common. It was put in with the intention of using it for the stem cell transplant. But it’s a pretty good one!

INSERTING THE LINE

The line, like I said was put in in like a Theatre. I was wheeled down in a chair with a lovely hospital gown on! And my line would you believe was given me a box with my name on and ‘left side’ lol! Anyway once I was down there the nurse talked through what would happen, all the staff were really nice and I think they could tell I was nervous!! A cannula was inserted into my hand (I knew I’d never escape without one more!) but the nurse got it in the first time and it was ok though I did ask how bad it would be without sedation – as the cannula was purely to give me sedation, that’s how much I hated them by then!! But I was assured I would be better off with it! Anyway once all that was over I had an x-ray to look at the vein and check it and everything. However the vein they usually use, in me, was too small for my line. They couldn’t use the right side of the chest as I still had my biopsy wound. In the end they decided on an alternative vein which is sometimes, but less commonly use but was big enough for my line.

The actual procedure I didn’t feel. I felt the local anesthetic which stung a bit but that was the most pain I felt. I was expecting to be in quite a bit of discomfort and feel some pushing and pulling and although I felt some of that it was minor.

The actual procedure is as follows: A small cut is made in the skin near your collarbone and the tip of the tube is threaded into a large vein. This is called the insertion site. The tube is then tunneled under the skin to reach the exit site. The exit site is the place where the end of the tube comes out of your body. A chest x-ray is done afterwards to make sure that the tube is in the right place. When the tube has been put in you will have dressings covering the insertion and exit sites. The pic shows my line!

However I had to be awkward! They got the first line in but on the monitors and stuff it showed that it was making my heart flutter and in actual fact it was too close to my heart!! So anyway that line was hurriedly taken out, but I didn’t feel anything other than a bit of a panic at what was happening!! Nurses were sent off to find a shorter line, the problem was that the vein they had used was a little bit closer to the heart so the line was too long. Eventually the right size line was found and put in, again I barely felt anything and once that was in, it was all done!! I was put in the recovery room and soon a nurse of the ward came to collect me with a porter. I had some pain in the area for a few days but nothing major and painkillers took it off. My line also is held in by a stitch which normally they aren’t but cause of the complications with putting it in its in a slightly weird position or something! Anyway the top stitch is out like everyone else but the bottom one has to stay in.

So that is the story of my Hickman line! I have to say once it was in I was so relieved and although it took a bit of getting used too – I mean I now have 2 wires hanging out my chest I’m fine with it now and I don’t notice it! It has to be flushed once a week when not in use and the dressing changed once a week but that’s it. And even though I had a few complications getting it inserted it’s been fine since and the procedure was no where near as bad as I ever thought it would be! Now I love the line, it means far less worry when I go into hospital and they can usually take blood from it (with a one time exception when it wouldn’t bleed!) but its definitely worth it.

So now the line was in, it was on to the IVE…..

PET scan and the bad news that followed....

2008-01-13T14:56:00.000-08:00

I had my PET scan in Nottingham. A PET scan shows up exactly how much of the tumour is active whereas on a CT scan you can only see the size of the mass not how much is active. I was given a small injection into a vein of radioactive ingredient and then was left in a room for 50 minutes while it worked through my body. I was on the scanner for about half an hour and it was pretty uncomfortable but nothing strenuous. The picture is of a PET scanner.

We were expecting the results back within a week or two I believe. However we were left waiting for a long time and I got increasingly nervous. However I was expecting them to say that it had shrunk down and that everything was ok.

When we were finally called into the consultant’s office it was bad news. His fist words were ‘we are worried.’ It turned out that the RCHOP had not caused a response. Or if it had the tumour was growing back faster than it was causing it to shrink down. I was shocked, I cried a lot in the consultant’s office and at home. For the first time I started to think about what would happen should the treatment not work.

It was explained to us that I would now be transferred to Derby for inpatient chemotherapy called IVE. If RCHOP was 4 on the chemo scale (out of 10) then IVE was 7! They said after 2 lots of IVE 4 weeks apart they would collect stem cells and do a stem cell transplant using my own stem cells. This would involve taking my stem cells, giving my ultra high chemo and then putting the stem cells back in to recover the bone marrow and blood. This scared the hell out of me but as long as it made me better I didn’t much care!!

I was also told that I would need to have a central line fitted as my veins wouldn’t take the IVE chemo. I was booked into Derby for the following Monday, this was Friday, so I had the weekend at home before my 5 day stay in hospital.

Pnemonia

2008-01-13T14:39:00.001-08:00

In late October, like I said I had been feeling really good. However one night I started feeling poorly and when I took my temperature it was raised, as in over the number that we have to ring the hospital for. As chemo can cause your counts to drop you are more prone to infection and any infection you get can be potentially serious as your immune system is lower than a normal person’s. Anyway I was shivering and felt ill, my breathing was getting worse and my temperature went up to 39. A normal temperature is anywhere between 35 and 37.5. So anyway we rang the hospital and were instructed to go in straight away. We were seen in A&E as was the rule, we had to got through A&E and they would admit me if necessary. Anyway in A&E an infection screen was done which means blood tests and urine sample and your observations (pulse, blood pressure, temperature and saturation levels – oxygen). They also gave me paracetomal to bring the temperature down though we’re not entirely sure they should have done that! And within a few hours I was sent home.

The next morning I felt no better and my temperature was high again, so we called again but this time as it was a Monday morning we could go straight to the chemo uni and see my own doctors. Well sort of, Dr. Smith was on holiday but I saw Dr. Ahmed, one of the doctors I had seen originally. He admitted me straight away, at that point they were unsure what was wrong. My biopsy wound was infected but that didn’t explain my worsening breathing diffcuclties.

I was in hospital for 2 weeks and after a few days they soon discovered, after an xray that I had pneumonia. I was barely eating, could barely breathe and was on 24/7 oxygen. One nurse told me in the first day or so that I needed to find a way of coping, things were going to get worse before they were going to get better; that I didn’t need my oxygen and my breathing was due to me panicking! By the end of that same day I was being monitored by high dependency unit staff and they were pretty certain I had pneumonia so I’m guessing she felt a bit of a fool! She really upset me and I have never quite forgiven her! Luckily I’ve never been on that ward again and am never likely to be. All the other staff were brilliant and Dr. Ahmed was fantastic. I had my blood gases taken which is a very painful injection into the wrist. Not nice! Anyway I was on hourly obs overnight for 2 nights and the only reason I wasn’t taken to high dependency uni was that it was an open ward and I was at risk of infection. They gave me IV antibiotics and hoped they would work. My mum and dad stayed overnight one night and until midnight the next night. My dad had words with Dr. Ahmed who told him to prepare himself and my my mum for the worst as I was very ill and may not make it. I didn’t realise that at the time but have since found out. It freaked me out at first knowing I was that ill but I’m ok with it now,, I got through in the end!! But I don’t think I realised at the time how ill I was. I knew I couldn’t walk from the bed to the toilet (which was at the end of the bed) which scared the hell out of me. Not being able to breathe is the scariest thing in the world!

We though from the x-ray I had while I was in with pneumonia that the tumour has perhaps shrunk by about 25% which we took as a positive at the time.

One night in hospital my cannula I had in stopped working. I needed another one in as I needed the IV antibiotics. 3 doctors tried and failed. I had 5, very painful attempts as a junior doctor, then an SHO, followed by an ‘expert A&E nurse’ who ended up bursting my blood vessel and giving me a bruise to remember tried to get this cannula in. I was so ill and so tired I began to get very very agitated and stressed. By the time the nurse had failed I refused to let anyone else near me with a needle and told people I couldn’t take anymore. The ward sister phoned the doctor and asked if I could have oral antibiotics instead over night but he said I needed the IV ones as they seemed to be working and he couldn’t risk stopping that. When she told me that I screamed and kicked the bed. I was sooo frustrated! I was given sedation which I didn’t believe would work and an anaesthetist was sent back down to do it. He had been in previously but I had refused to let him even try as he wasn’t happy with my veins. By the time the sedation kicked in I was happy to let him near me and called him amazing when he got the needle in first time!! I think dad had been praying for it to work too! It was one of the worst nights we’ve ever had but I managed to get through it in the end.

After 2 weeks I was showing clear signs of improvement, I could breathe again and I was let out of hospital. It took me a long time to recover from the pneumonia, I was very weak for a long time, I wasn’t eating properly though I was getting enough, I had fortijuice drinks to ensure I was getting enough nutrients and enough inside me. I had my fourth RCHOP as an inpatient while I was in hospital. A week or so later I was sent for a PET Scan to check my progress.

RCHOP and Losing my Hair

2008-01-13T14:04:00.000-08:00

So I started on my RCHOP treatment. After my first round I managed to visit Uni during fresher’s fair. I found it really hard being away from uni during fresher’s week as I had planned on being an auntie and helping first years move in etc. Freshers fair was great, I saw lots of people, sat in einies (student pub), went to Gosta (pub), generally a really good day. However I was exhausted after it and slept for the rest of the day and night until the next day. It certainly made me realise how much my life had changed! A few hours with friends and it was like I’d done a 2 day hike or something! The picture shows me in one of my wigs.

Anyway 3 weeks after my first lot of RCHOP and when my second round was due I felt as bad as I had done when I was admitted to hospital. My breathing was bad again I was back to sleeping propped up in bed. I went into the hospital and they were slightly concerned though not too much as it was only my first round. They basically thought the tumour was being shrunk down initially but then it was growing back too quickly before the next lot of treatment was given. My 2nd round of treatment was bought forward by a day and I was changed to a 2 weekly cycle. This was the first time it was mentioned that Dr. Smith, my consultant had weekly webcam meeting with consultants from Derby and Nottingham and that he had corresponded with them about my case. They all agreed a 2 week scan would get ‘one foot in the door’ and hopefully cause a response in the tumour.

Because I was now on a 2 weekly cycle my blood counts would not recover in time by themselves. Normally in a chemotherapy cycle your blood counts drop after about a week and are low for a few days or longer depending on the strength of the chemo and this is the time that you are more prone to infection. If the counts become dangerously low you may have to go into hospital and you may be neutropenic which is where you have virtually no immune system. After a few days they will start to recover and are usually good enough for the next round of chemo. In order that mine would recover more quickly I had to have GCSF injections, you can do these yourself but I have never been able to bring myself to do it! So the district nurse came out to do these, I had Julie most days but some days some other nurses would come. They were all lovely and when we don’t’ need them to come out for a while they often ring to see how I am. Thats me in my hat in the pic.

Anyway GCSF injections help your white cells to increase and so helps prevent infection. They aren’t that painful, you get used to them! The only bad thing is that they cause aching in the lower back and I get like sensitive skin all over my upper body. It has got quite painful in the past! So I don’t particularly like them! However pain is a good thing as that is a sign your bone marrow is making plenty of cells!

After my second round of RCHOP I improved slightly. I was still sick but the side effects weren’t too bad. My mum and dad were both back at work and I was at home, some friends came to visit but most days I spent watching TV and on my computer. It was boring but I thought if I could just get through the next few months I’d be able to start doing more, maybe go back to work in the New Year, go to visit friends at uni.

I had my 3rd lot of RCHOP and things started to go really well. I went shopping in Derby with my mum and dad, walking round for 2 and a half hours, and I also went into town on my own with a friend and went to the pub, a far cry from how things had been. So in general things were looking up….!

LOSING MY HAIR

One of the main side effects of RCHOP is loss of hair. I have to say when I was first told I wasn’t particularly bothered about it, I thought that I’d be able to try loads of different styles of wigs and saw it as a positive thing as much as I could. I picked 3 wigs from a catalogue and I was feeling ok about it.

However as the time when it was likely to come out got closer I got more apprehensive, I started researching on the internet about how it fell out and how long it took and would I just wake up one day and find all my hair on my pillow…I couldn’t find too much information, people tended just to say ‘ I lost my hair’ but no details.

Anyway one night I sat there and I ran my fingers through my hair and a few strands came out in my hand. I knew then that it had started and I was a little bit upset I have to say. It makes everything real when your hair comes out. Anyway over the next 2 weeks I lost the majority of my hair. Whenever I brushed it a fair amount would come out, I went in the shower twice a day sometimes to wash it and get it out. My mentality was that once it was out, it was done and it would be easier to deal with it. I had been told by the nurse to do this as it would be easier. I had my hair cut short so it was easier anyway and I would stand over the bath and just pull at my hair. It came out in clumps…. The picture shows me when I was losing my hair, it used to stick out and not fall back into place! It also was sore when it was coming out, like I'd left it in a ponytail for too long and tried to take it out. it just stuck out at all angles and wouldn't lie flat!

In a way it was funny, weird as that sounds, me and my mum had quite a laugh literally pulling my hair out! Crazy as that sounds, made it easier anyhow. Anyway for a long time I had a covering of like baby hair, I wasn’t bald though you could see my scalp and I would always wear something to cover if it if I went out. But in the last few weeks I have finally lost the last bit of it and now have almost like a skinhead! Some like stubble is growing I think, but I have virtually no hair now, I look bald for the first time! Which was really weird at first, I didn’t like it but I’m used to it now and don’t care!

With regards to my wigs, before I lost my hair I thought I would want to wear them all the time and I would hardly ever take them off but when the reality came I found them too itchy, they made my head sweat and I wasn’t all that keen on them. The first 3 I ordered, 2 of them were fine but the 3rd one I didn’t like so I swapped it. At first I didn’t like trying my wigs on, I found it weird but it was ok once I got used to it and I did go out in them a few times. However now I have pretty much given up with them. I wear headscarves, bandanas and Buffs which are like pieces of material that you can fold into different styles and wear on your head. They are so comfy and look pretty cool too! Alternatively when I’m sat round the house and if it’s a bit warm especially I’ll wear nothing! Go for the natural look. I’m not ashamed of it, I was a bit apprehensive about showing people but I’ve decided now that I shouldn’t be really and everyone has reacted fine and stuff so its ok! I know I look different but I can’t help it!! The picture shows me in my red wig.

I’ve lost my eyebrows too although they have started to grow back a bit in between treatments but I have a good eyebrow pencil that I use to draw them on. I’ve also lost my eyelashes and some of the hair on my arms and legs. I have no underarm hair. So yeah hair loss isn’t limited to your head! It pretty much affects everywhere!! Thats me in a buff recently.

So I had my 3rd RCHOP and things were going well…..however they soon took a turn for the worse when I got pneumonia…..I had my fourth RCHOP in hospital while I was recovering and it was delayed by a week….following my fourth RCHOP I had a scan to check how things were progressing and to see if we needed to change anything….

The 'Asda Incident' and Uni Decisions

2008-01-13T12:45:00.000-08:00

I was finally allowed home on the Thursday night, almost 3 weeks after being admitted. On the Sunday me and my dad decided to go to Birmingham to the big Asda and also to collect some things from my house I had there. While in Asda I tried on numerous clothes and was feeling fine. Once I had picked my clothes I went to find my dad, as soon as I saw him I started to feel a bit weird, my breathing started getting worse and things started to spin, I managed to get over to him but as soon as I did I collapsed. My legs gave way but luckily my dad caught me, but I had no control over my own body. I was always conscious but for about 5-10 minutes I was all over the place, I couldn’t even speak and people were asking if I wanted water and although I did I couldn’t say anything and I couldn’t even lift the cup to my mouth. I was gotten a wheelchair and managed to sit down but my head kept falling all over the place and I had no control. It was one of the scariest experiences of my life and I think my dad’s too! Anyway eventually I recovered and we were able to get home though we had to go up the hospital to get me checked out but I was fine. Just one of those things, my body was weak and the heat in Asda just meant I passed out!

Another thing I had to decide about was uni, after the ‘Asda incident’ we thought maybe with things as they were it might be an idea to give it up for the year. For a while I sorted out the idea of commuting and getting people to take notes for me in lectures I might miss but it soon became clear that going in 2 days after treatment wasn’t going to be an option and also my treatment days clashed with lectures. I thought I was just going to miss too much time and I wanted to enjoy my second year. So in the end I decided to take a leave of absence for the year. Something I didn’t want to do but was necessary. Since then I am not sure about uni, I may return at the end of everything but I may not, it really depends on how things progress and also where I am in my treatment plan. I doubt I will be back by next September.

I do miss uni and I miss the social life and my independence and most of all I miss my friends but I think it will be harder next year as everyone, or most people I know, return to uni after their placement year and I am still in Burton, at least this year everyone is spread out and in different places, everyone is missing uni, although at least even on placement year you have a social life, I do nothing! But I think next year will be harder. My reasons for not going back are simply that I’m not sure studying is what I want to do anymore…I really don’t know what I want to do anymore, I think I will just know when the time is right and I’m not worrying about it too much right now. I plan to visit uni next year if I can, I hope I can, and maybe even go on the odd night out but I can’t plan as I don’t know! I may get to Birmingham this year for short day visit but I don’t know yet. The picture is of uni.

A Definate Diagnosis

2008-01-13T12:34:00.001-08:00

I had my own room when back in Burton and decorated it with all my uni pictures and Liverpool stuff. I had to have injections every day to prevent clotting and they bloody hurt!! I HATED them!!

Anyway, after many delays in getting a result we finally got a full diagnosis about 2 weeks after I had first been admitted. I had Non Hodgkin’s Lymphoma, Diffuse Large B cell. It was a common type of NHL, was aggressive, which was good as it generally responded better to treatment. NHL is a cancer of the blood; The lymphatic system is a crucial part of the body’s immune system and helps to defend against infection and diseases. In Non Hodgkin’s Lymphoma, the lymphocytes (white blood cells) start to grow abnormally and multiply in ways they shouldn’t. This then forms swellings throughout the body, most commonly in the neck and armpit (lymph nodes) though my tumour is in my chest.

I would be started on RCHOP chemotherapy every 3 weeks. This was 3 chemotherapy drugs: cyclophosphamide doxorubicin and vincristine along with Prednisolone which is a steroid and the monoclonal antibody treatment called rituximab.

I had my first cycle in the hospital overnight. I met Wendy the chemotherapy nurse and she was lovely. Having the chemo itself just involved Wendy inserting a cannula which I hated and was totally scared of but she put me at ease and I was fine in the end, and the chemo was just injected through this. The rituximab, which I had had a few days before, just went through a drip like a bag of fluids but had to be given slowly the first time to check I had no reaction to it or anything. Side effects could include sickness and although I was given anti sickness drugs I was very sick that first night after chemo. I was also high from the anti sickness drugs and rang my dad at 2am! But then I just fell asleep! I also had a swelled up face after that first chemo but they never knew what caused it! Random allergic reaction to something! Anyway it went down and its never happened since!

So now we had a definite diagnosis we could start getting on with it. At this point I never thought about the treatment not working, assumed I would carry on with uni, was told my breathing would ease pretty quickly and everything was set to be ok by Christmas!

Tests, Biopsy's and more tests!

2008-01-13T12:13:00.000-08:00

On 21st August I was sent for my CT scan, my first of many cannulas was put in and I don’t remember it being too bad. I had to drink some vile fluids that highlight your insides and injection they give you in the scanning room makes you feel like you are weeing yourself! Lovely! But aside from that the CT scan was fine. The picture shows a CT scanner.

Just before I was sent down for my CT scan I met the Haematology team from Burton Queens. I had been getting upset as no’ one seemed to be telling us anything but right on cue a whole host of doctors entered the room!
Dr. Ahmed, Dr. Zai Lala (who we called Dr. Zai pronounced Zi), Macmillan clinical nurse Pat Holland and a few junior doctors. Dr. Ahmed explained to me and my mum that they strongly suspected the shadow on my x-ray was ‘Lymphoma.’ They also used the word ‘Chemotherapy’ when explaining treatment but I didn’t pick up on this. I was trying to drink the CT scan fluids and struggling with it as it was so vile that I didn’t pick up on everything the doctors were telling me. The word Cancer wasn’t used to us that day but my mum realised that’s what it was because they talked about chemotherapy. However she didn’t mention it to me as she didn’t know if I had realised this yet and also she didn’t want to frighten me.

It was explained to us that I would need a bronchoscopy which is where they put a camera down your throat and into your chest to have a look at what’s going on. The initial plan was to try and get a piece of the mass to do a biopsy on to get a full diagnosis but they weren’t very hopeful they would be able to do this from this procedure. It was also done to check that there was nothing actually in my lung. I was told if they couldn’t get a biopsy from the bronchoscapy I would most likely have to have a full biopsy taken from my chest which would involve going under general anaesthetic and the surgeons opening up my chest to take a sample of the mass. This would need to be done at Glenfield Hospital in Leicester.
I was told that they would come back the next day with more information and also with Dr. Smith, another consultant. I first realised that lymphoma was a cancer because I looked it up on the internet on my mobile phone in the hospital. Stupid really because you find all sorts out on the net and half of it is a load of crap! But anyway wikipedia told me that lymphoma was a cancer of the blood. Needless to say I was shocked! But until the doctors told me anything I decided not to worry too much about it.

In the following days I had my Bronchoscapy. Probably the worst procedure I have had done while in hospital. I was talked through it beforehand and was told I would have a local anaesthetic to numb my throat while they put the camera down it and also that I would be given sedation so I wouldn’t know much about it. As my breathing was so bad lying flat was an issue so I was constantly coughing which made it more difficult for the doctors and more uncomfortable for me. If I had it done now I’m sure it probably wouldn’t be as bad though I’m in no rush to experience it ever again! Anyway they injected into my neck, twice I might add! And yes this did numb the area so I didn’t feel any pain, just more discomfort as a camera was after all being put down there! Also the doctor was talking to a load of student doctors/nurses explaining what he was doing as he was going along which to be honest I could have done without and it meant I couldn’t talk to my nurse properly! Anyway even though I was sedated I was pretty aware of what was going on! I was very glad when it was all over!! The picture is me, Rachel, Laura and Mand. Laura and Mand came to visit me in Burton Hospital when I was ill.

The upshot of the procedure was that there was nothing in my lung but the mass was pressing on my lung which meant I couldn’t breathe properly. They failed to get a sample so I had to go to Glenfield Hospital. I had the biopsy done on the Friday after the admission on the Monday. I was in Leicester from the Thursday until the Saturday and I had the surgery on the Friday morning. My doctor was Greek, very funny and reassuring and everyone there was great. They double checked in Leicester to see if there were any other lymph nodes they could get a sample from which involved me having an ultrasound scan but there was nothing. The procedure itself was fine, I was nil by mouth for a day I think which was hard! I also had to have a cannula fitted which was a bit painful but nothing major and they tried to insert a bigger one into my wrist but it hurt me too much so they did it after I was asleep! All I remember then is them giving me the mask to breathe in anaesthetic and I was gone! I woke up, high on drugs and asking if the x-ray in the corner was mine! I was also desperate for a drink but had to wait for a while, I also asked for more morphine which I was later sick from! I also threw up from the anaesthetic and I was pretty groggy for the rest of the day! I had my chest drain removed, something which was very painful, as soon as she started pulling until she finished I screamed! Loudly! My mum and sister had to leave the room!

Once back at Burton things were explained more clearly. They initially thought I had Hodgkin’s lymphoma because of my age but it turned out once they got the biopsy results back it was non Hodgkin’s. This changed things somewhat, I was told it was still 90% chance of a cure and it was likely I would respond to RCHOP chemotherapy. However I would definitely lose my hair and my fertility could be affected. I had already had some fertility nurses come and discuss the option of freezing my eggs but after seeing what it involved I decided not to. The chances of success were slim and it would delay my treatment by 3 weeks or so. After speaking to Dr. Smith he advised that really we couldn’t delay treatment and also that RCHOP, although it could affect fertility, it wasn’t always the case and many people went on to have children. It wasn’t an easy decision but I couldn’t risk delaying treatment and it would be different if I had been in a long term relationship but I wasn’t and there are other options should I lose my ability to have children.

So now we were waiting for a full diagnosis, I was back in Burton, basically on oxygen most of the time and also nebulisers which help clear your airways. I was also put on steriods to help clea my symptoms. I was still sleeping propped up but I had a cool bed that was remote controlled!

I had several vistors from friends, both from uni and home, which I really appreciated and made things so much easier, I also had lots of support on facebook and texts from my friends, my dad made endless phone calls to people to keep them updated as i was too weak to do that. My mum, dad and sister visited everyday, all day and thats something I really appreciated as I would have gone crazy if I had of been on my own!!

So now we were waiting....

The Summer of 2007

2008-01-09T16:18:00.000-08:00

I want to begin by explaining how I came to be here and what has happened to me in the last 6 months. This first post will be about the summer of 2007 and the two months leading up to my admission to hospital and in the next few days I will bring you up to date to the present day. Once I am up to date I will post regularly as a proper blog.

I am a 20 year old student and in June 2007 had just finished my first year of Psychology at Aston Uni. I was having the time of my life and felt totally fit and healthy. The photo on the right is me and my friends Laura and Rachel from Uni, in the last week of term. I am the one in the yellow top! A few people had commented that I had lost some weight but I never saw that as a bad thing! I came home from uni and planned to work my way through the summer at my local golf and country club. However I soon came down with a mouth infection, followed by tonsillitis, a persistent cough, heavy night sweats and gradually severe breathing difficulties. The GP finally decided to send me for a chest xray at the hospital. This was booked for a Tuesday but the Saturday before my breathing got really bad.

We finally decided enough was enough and went up to A&E on Saturday 11th August 2007, I know because it was the first day of the football season and I was wishing I was sat at home watching Stevie. G’s winner against Villa! Anyway after a long wait we were called in, the doctor we saw said that I had tonsillitis still and that my tonsils were enlarged and they were stopping me from breathing properly. He said there was no need to have a chest x-ray and to cancel the one we had booked. I was prescribed antibiotics and sent home.

In the following week we visited the GP again, he said he didn’t think my tonsils were enlarged and said if things didn’t improve he would book another x-ray. By the following Sunday (my birthday) things hadn’t got any better. We were planning to go up to Liverpool for the day on the Monday even though I could barely breathe we thought maybe I could just look around the Liverpool FC club shop. However things hadn’t improved and I was still struggling to get up the stairs. We all agreed that instead of going to Liverpool we would have to go back to A&E. We would have gone on the Sunday but I refused to go on my birthday!!

So on Monday 20th August we returned to A&E at Burton Queens Hospital. The doctor we saw this time sent me for a chest x-ray straight away. When it came back I was admitted to hospital. I had an ECG and various blood and urine tests done. The initial diagnosis was that of pneumonia. However within a few hours they were unsure. They called some other doctors in and it was soon clear that actually they didn’t know what was wrong. I was admitted to ward 3 after lots of waiting around, I was in my own little room and I was pretty much left alone for the rest of the day. I remember crying a lot and being pretty scared as I’d never been in hospital before and I had no idea what was wrong with me. I was told that I would be having a CT scan the following day. Visiting times were 2-4 and 6-8 and so my parents and sister visited during those times. I spent most of the time on ward 3 which was only a couple of days reading Jodi Picout’s Tenth Circle.

The picture above is me in the last week of term at uni, I knew I'd lost weight as the shorts i am wearing belong to my sister and are size 10, im usually a size 12 and occasionally a 14 depending on the shop!

So that brings me up to the 21st August 2007.....