New Website

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

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!

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!

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!

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

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