Another day on Toghill Ward....

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

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

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

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

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

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

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

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

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

Night Night xxxx

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

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

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

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

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

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

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

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

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

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

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

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

So where do I go from here??

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

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

From this comes 3 potential outcomes:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Back in Hospital

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

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

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

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

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

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

Feeling low

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

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

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

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

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

2 milllion Stem Cells!

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

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

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

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

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

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

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

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

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

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

xx

Numbing Cream.....a new revelation!

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

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

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

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

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

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

xx