Unprepared

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

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

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

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

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

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

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

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

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

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!

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

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

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

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!

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!

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!

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....

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!

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