Acute Lymphoblastic Leukaemia - Diary & Experiences

What's left to say?

2010-03-02T08:04:00.004Z

Well it's March the 2nd, we've had Christmas and I've had my birthday back in January and I've got to say I've never felt better. I had a great Christmas with my family, I managed to get out of the Hospital Christmas Eve, although I had to go back Boxing Day morning for a quick check-up I got to spend the majority with my family. Unfortunately, having the herpes simplex meant I couldn't be around my new-born baby niece which meant my sister and her family couldn't come round for Christmas which was a shame. Still thanks to the anti-virals (a short course of IV Ganciclovir through my new pic line and some Valganciclovir tablets) it cleared up relatively quickly.

After that my eczema flared up again but thanks to the Doctors down in dermatology it's looking pretty good now, if a bit dry. It took a lot of steroid ointments (Emovate, Betnovate, Hydrocortisone and something called Calmurid) but its finally starting to clear up. I did end up shaving my head again so I could apply the ointment properly to my scalp (my scalp was so dry and flakey I could literally just pull me hair out). It was a bit gutting to have to get all my hair off again but in fairness it grows pretty quick and it's only going to come back stronger.

My birthday was brilliant I got pretty much spoiled rotten, again. My girlfriend booked us a trip to London for the following weekend to go and stay in a hotel and see my favourite play 'Woman in Black'. Plus we went to Madame Tussaud's and the London Dungeons:

We had a brilliant time, in fact we've just started keeping a scrapbook of our trips and adventures, long may they continue! So after Christmas and my Birthday I'd made off with a Race Track Day experience, an electric drum kit, a trip to Padstow and an iPhone... not a bad haul eh?

So it's safe to say that I'm feeling pretty good at the moment, not too tired, but sleeping well. I'm working out at the gym every week to try and get my strength back, just started swimming there as well now my skin's nearly sorted itself out. It's hilarious how weak I am compared to before I went in to Hospital. I mean I was never Mariusz Pudzianowski but now I'm struggling to bench like 30k . Plus jogging gets pretty arduous pretty quickly, especially when there are people three times my age in that gym going at it like Paula Radcliffe. Still I'm getting there at least.

To be honest I would like to work out a lot more but University work is keeping me pretty busy as well. I have weekly programming assignments that are pretty tough, plus I've been working on a group assignment to make a 2 minute video clip (yes that was as specific as the brief got..). Still we're pretty proud of it, check it out:

A Brief History of Music and Dance

Least that's out of the way now, that just leaves weekly assignments and, of course, my dissertation. 15,000 words feels pretty impossible right now (given I'm at the 3,500 mark) but I'm confident it will get done. For my dissertation (actually we call it Computing Project in our faculty) I'm making a sort of Physiotherapy Manager for kids with Cystic Fibrosis. It's kind of a WiiFit game for kids.

In terms of Hospital visits I'm only going in once every 4 weeks now to see my Oncologist, Professor Marks. Nobody really told me to stop coming in weekly but they never do tell you anything really, I just started to get the impressions from my Doctor's that they didn't want to see me as much! Especially when they told me to go to my GP for medications. So that's all good news, especially since in August I'll be moving to Exeter with my girlfriend. She got a place at the University there to study as a primary school teacher. Honestly not sure yet what I'm doing to do down there... to be honest I just feel like kicking back and relaxing a while! But I think a post-graduate degree or a graduate job is probably the most likely thing.

Today is in fact my girlfriend's birthday so while she's at work I'm going to be running around getting ingredients to bake her a Victoria Sponge (disaster will no doubt ensue and I'll have to call my nan for advice) and to cook her a meal later on. I would mention what presents I got her but I don't want her reading this before I give them her! I'm just hoping it will make up for the fact she spent her last birthday in hospital with me.

So what's left to say? Well I'm looking at volunteering work for the Teen Cancer Trust. I thought about other charities like Leukaemia Care but I think, given my age, I'd be able to help kids around my age a lot better. Plus I'm also looking to try and get this blog published in some form or another, looking back at some of the older posts I'd forgotten how much technical detail I used to go in to about drugs and conditions so I think it could be a really useful document to somebody my age suffering from the same thing.

A lot of people on the MacMillan website talk about a 'cloud' over their head after they have had all their treatment, as though the threat of relapse is always present in their minds. I found a lot of figures to suggest the majority of people my age who suffer from ALL go on to live a disease-free life, but I won't deny the thought it (or another type of cancer) coming back has crossed my mind. I guess I've kind of prepared myself for that possibility as much as I can, especially since all the Doctor's have told me flat out that it could happen. It sounds ridiculous but what is the use in worrying about it? Even if it should happen I know I'm in the best possible hands I could be and I've got the best network of friends and family I could possibly hope for to support me. It's not going to change the way I live my life.

This whole process (I can't bring myself to use the word 'journey'...) has been pretty incredible. There's nothing I can really say to sum up the emotions I and people around me have been through or the kind of perspective that something like this gives you. To be honest I've tried and failed to sum up what I think I've gained from this whole thing a few times now, but I guess its just that feeling of incredible accomplishment to know you got through all that! I mean realistically okay it was the Doctor's and nurses that did all the hard work, I just had to show up and put up with the effects! But still the fact you can go through all that and come out the other side with a better understanding of what you want to do with your life and how you want to be as a person, that's something you keep forever.

Still this wasn't just my accomplishment, I couldn't have done it without the support of everyone around me. Everyone who looked after me at home, replied to my blog, sat with me in the day area, visited me in isolation or smuggled me good food in to the Hospital! Thanks.

Typical... but Merry Christmas

2009-12-24T10:59:00.003Z

Well after all my talk of almost getting back to normal I was hit by the herpes simplex virus. Using all these steroid creams reduces the immunity in your skin so it let the coldsore virus I already had in my mouth just spread all over my face and chest. I've been back and forth from BMT to Dermatology trying to sort out the virus and eczema, having been on high-dose aciclovir for a couple of weeks it was pretty clear the virus was still spreading and some of the postules weren't scabbing over properly.

Needless to say when my consultant said on monday that I'd have to come in as an in-patient for IV treatment I was not all that happy. Considering I'd spent last Christmas in the hospital I was really looking forward to being with my family and my girlfriend this time around.

Luckily, seeing as I actually feel fine (though I don't look it), they put a pic line in my arm and have let me take the IV ganciclovir at home. Though I've still got to come back for a blood test boxing day which is a bit of a bitch, but least I'll be home at Christmas.

The eczema's settled down quite well, though I'm a bit itchy still, my scalps still the worst though. With the skin really flakey I'm just losing loads of hair which is pretty shit when you've already lost it once, but hopefully I won't have to shave it all off again.

Hopefully this'l be one of the last things to put up with anyway, I'm feeling so much better thesee days. Anyway Merry Christmas everybody, hope you manage to have a good one.

Almost normal

2009-12-07T19:23:00.003Z

I'm so far out of transplant now I've given up putting day +??? in front of the title because its getting more and difficult to work out! Needless to say its been nearly 7 months now since my transplant and I'm finally starting to glance at what its like to be normal again (not that I want to ginx it).

There have been a few problems, I developed this rash a few weeks ago and was itching like mad. The Doctors were worried it was going to be another bout of Graft vs. Host Disease, though it didn't seem similar to the rash I had the first time, but it did coincide with my weening off the Cyclosporin (goodbye immune suppression drugs). So needless to say I was pretty worried they were going to get me back on steroids again which would probably have pretty much destroyed my chances of finishing University this year. Luckily, after a few trips to the Dermatologist and skin biopsies later, a Dermatologist Consultant took one look at me and said I had eczema. Apparently its pretty common to pick up a suceptability to it from your donor after a transplant, especially if there was some suceptability to it in your family already (both my sisters have suffered from it when they were kids).

So after a couple of weeks of itching and having the most incredibly dry and flakey skin all over my body I was finally given a couple of steroid creams to help. They've worked really well, although I do have these little chicken-pox-like spots on my face now but hopefully they'll be gone fairly soon.

I had been feeling a bit down about the constant barrage of crap I seemed to be getting. I mean with between the burst blood vessel in my eye, the steroid effects, the IBS, the throat infection and now this skin thing it felt like it was just going to be one thing after another. I know it sounds ridiculous to complain about stuff like this when you've been through so much horrendous Chemo and treatment but I always managed to put a positive slant on that stuff because I knew it was what had to be done to make me better. Now it just feels like, having been through all that crap, it isn't really fair to keep on getting these little set backs. I suppose its partly because I expected to be right as rain a couple of months after my transplant, I wasn't really prepared for the long slog of recovery.

Still, like I said, I'm really starting to feel normal again now. I'm getting Uni work done, going to the gym to get my strength back and only going in to the hospital once a week. Now if I could just stop itching and get some more sleep...

Day +172: There's always something

2009-10-27T11:18:00.003Z

Well after all the tests they gave me to find out what was wrong with my stomach they all came back fine, I even had an endoscopy where they put a camera down your throat and take biopsies of inside your gut in various places, that's not something I'd want to go through again any time soon. I know I've had bone marrow and spinal fluid sucked out of me but I'm just not crazy about having thick black cables forced down my throat.

Anyway all the tests I had came back fine and the Doctor's concluded that I'm suffering from Irritable Bowel Syndrome and chances are it'l clear up in a few more weeks. The better news though is that I've started coming off the cyclospirin and in a couple of weeks time I should be off it completely so my immune system won't be supressed anymore. On top of that I only have to go in to Hospital once a week now which is cracking. The Doctor told me to start hitting the exercise hard as well and I really want to, its just without getting enough food down me I'm still feeling sick and tired a lot of the time making it pretty difficult. Hopefuly that'l pass soon enough through.

Also I've had a chance to give my new immune system a work out by getting a pretty nasty throat infection, they've given me a ton of oral anti-biotics though and its mostly cleared up now but it's been a pretty rubbish few days only being able to swallow ice cream and water. I'm a little worried about how much weight I've lost over the last few weeks, I'm down to about 9 stone 5 pounds now and for somebody my height thats pretty low, still hopefully my appetite will pick up pretty soon because I'm REALLY missing eating out.

Day +151: Somebody find out what's wrong me already...

2009-10-06T16:15:00.002+01:00

Well I've spent a few more weeks feeling absolutely rotten; nausea, abdominal pain, back pain, mouth ulcers and on top of that my eye's still blurry. I've had pretty much every test they could think of, my consultant was worried it was a relapse of leukaemia with the back pain and everything so I've had a Bone Marrow test and a Lumber Puncture and spent a few days pretty worried but both the results came back totally clear. On top of that my X-ray and MRI scan were clear as well so its looking like it might be the Graft vs. Host of the gut again, which just means going back on the Budesonide. It's a bit of a step backwards but still it's not that bad, the Budesonide doesn't affect me really, but they have to confirm thats what it is first before I go back on it. Which means a few more days waiting for results and feeling crap. I've missed a couple of my lectures already and my physio has just gone out the window because I feel so rubbish, but I suppose its best this happens now rather than later on in the year when assignments start pouring in.

All in all though I'd much rather feel like this than have all the mental affects of the steroids which, by the way, have finally worn off. I'm not feeling anxious or depressed anymore and I can concentrate fine, so even if I miss a lecture or tutorial I can catch up.

Still I wish they'd get on and give me this endoscopy so they can figure out what's wrong with me.

Day +137: Feeling a bit rough

2009-09-22T09:30:00.004+01:00

Since coming off the gut steroid Budesonide I've been feeling a bit rough, lot of nausea and stomach cramps as though I'm full all the time but I've hardly been eating; at least not anywhere near as much as I normally do. The Doctors were worried it was the graft vs host in my gut coming back but it looks like its just side-effects from the steroids, they took a sample off me and as far as I'm aware that came back fine. At least I've actually been feeling hungry for the first time in ages, even though theres not a lot I want to eat.

The most worrying thing happened the the other day, I woke up and the vision in my right eye had a great big dark patch over it and was just totally blurry. I didn't think much of it at the time because I tend to get blurry vision when I'm tired but it persisted for 2 more days so I called it in on Sunday and went in to Hospital for a review. The registrar there thought that it might be CMV virus behind the eye but decided that I need to see an Optomotrist for a specialist opinion, if it was the CMV then I'd be admitted and put on the Phosgarnate (a nasty drug that wrecks my kidneys). So I went down to the eye hospital and saw the Doctor there and she wasn't quite convinced it was CMV since it's come on so quickly so I was spared Hospital admission for the night and told to come back tomorrow to see a consultant who was more experienced. I had 4 people look in my eye and they all concluded it wasn't CMV, which was good news, and that it was a bleed in the back of my eye since my platelets have been sitting so low recently. This spares me sleeping at hospital and having nasty drug, but it does mean I have to go in every day for a blood check to see what my platelets are. That's a bit of a bitch seeing as this week I have a Physio appointment AND my University registration but hopefully I can work it round all that somehow.

So yeah I was pretty worried, especially when the Doctor told me if it is CMV then the scar left behind would probably mean my vision was buggered for good. Hopefully that's not the case with just a bleed but they did say it could days or months for my vision to returns to normal.

Day +126: Down to me now really

2009-09-11T06:15:00.004+01:00

After my last clinic appointment I'm down to taking 5 different medications.... instead of about 15. I'm off all the steroids, not taking any of the magnesium or potassium supplements and soon they're going to start taking down my immune suppression medicine which means my immune system should be able to start fighting for itself and get rid of the virus' I have once and for all. Yes I've still got the CMV and Epstein-Barr virus, but the virus counts are very low and once the immune suppression meds start to come down they'll, hopefully, vanish on their own.

I went in to hospital last Monday, normally I have blood taken, wait ages, see a Doctor, tell them there's nothing wrong, then we leave hours later. This time they just took the blood, I filled out a form to say there was nothing I wanted to see a Doctor about and that was that, back home in time for tea and crumpets. Obviously a good sign that they're happy with the way every thing's going, still it feels weird moving on to this stage, a little disconcerting, you feel like you're really being cut loose but it's definitely a good thing.

So how's the coming down off the steroids going? Alright, the insomnia's still really wrecking me, coupled with the fact I'm alone a lot of the day at the moment with very little to do it can really get you down. For instance having been awake now since 5am, with everybody else asleep I start to feel pretty edgy and anxious. Same when every one's at work or Uni and I'm stuck in the house, still diazapam and the relaxation exercises help and I'll be back at University fairly soon working my ass off to get my degree anyway. Another thing I'm a little anxious about, but that is another three weeks away and if I look at where I was three weeks ago... I've come a long way alright, I think by the time Uni really starts I'll be ready for it. It's going to take a lot of getting used to, but I'll manage.

I was thinking back to when we had to make the decision whether to go for a Bone Marrow Transplant or just go the chemotherapy route and I definitely think we should have been made more aware of the recovery process after the transplant. I don't regret the transplant at all but if I didn't have my girlfriend and my family to support me through the recovery it just wouldn't be possible, if I had a teenager or young adult going through this kind of recovery without the right support I'd be terrified they'd self-harm or worse. I think I might try and volunteer at the hospital when I feel up to it, if they'll let me, see if they'd want somebody who could talk to people about the experience. I'd never want to put anyone off it, it's saved my life but the at the end of the day this stage was never really talked about and it's been the hardest thing I've ever been through.

Day +120: Line out

2009-09-05T04:01:00.003+01:00

It's been 120 days since my transplant, and a suprising 261 days since I was first diagnosed and I've finally had my central line removed, for anyone who doesn't know what that is it's the tube they've been using the last 200 days to take blood and give me chemo, but since I've hardly had blood in the last three months and I don't have chemo anymore it's out, and it feels good.
It took some persuading of the Doctor's to actually get it done, they kept umming and ahhing because my platelates were low but in the end I just told them that both of my consultants had said get it out so they did it. It was a long day, since I had to have a platelet transfusion first, then then line out, then some pentamadine, which never makes me feel great. It's a gas mask i've got to wear for about 20 minutes, some kind of antimicrobial gas to keep away infections and that. I can't say I'm feeling exstatic about the line being out yet, once the stiches are out and my platelets are up again maybe, right now its just a bit sore and i still feel a bit wary about touching it, but its great to have it out.

My CMV virus counts are still negative so no nasty anti-viral drugs to drag my blood counts down, hopefully they'll keep going up and up now, it's only the cyclosporin that's possible taking them down.

I'm feeling pretty down at the minute, I'm finding it very hard to stay motivated with the exercise when I cramp up so easily and finding it REALLY hard to enjoy anything I used to enjoy, by virtue of the steroids and lack of sleep I suppose. I've been told to try and stay awake during the day to combat the insominia, that's going to be pretty tough, when you're sleeping from 10:30 til 3:30am, maybe I should start going to bed at 9:30 for now.

Still I feel a lot better than I did three weeks ago so hopefully, again in the next three weeks when Uni starts I'll be almost back to normal. Not quite sure how fitting the timetable around hospital visits is going to work, I think I'm going to end up pissing off a lot of Doctor's. Got a feeling I'm going to be going in early for bloods then leaving pronto for classes and just telling them to phone me if there's any problems, considing I never have ANYTHING to tell them I can't reallyy see why this would be a problem, obviously I'd go to clinic appointments and I'm pretty sure I'm going to have freerange to choose my timetable anyway.

Right it's 5:21 and I'd really like to get some more sleep, though I think this probably unlikely we'll see.

Day +109: Some very good news

2009-08-25T18:04:00.003+01:00

Well we had a VERY long day at the hospital monday, at first it felt incredibly dissapointing. I needed to have a blood transfusion (my first in months) because my haemoglobin was so low, all of my other blood counts were lower and I'd been taking hte GCSF injections so I was really hoping that my neutophils would be up above 1 and I'd be able to start getting out and doing more. Anyway it was a long day, talking to Matt the consultant cheered us up, he explained this is very common when taking the the anti-viral drugs and it shouldn't last all that long.

Still today I got a phone call telling me that I my CMV virus count they took is now 0, so I can stop taking the anti-viral drugs completely, coupled with the GCSF injections I'm taking my blood counts should start shooting up. I still have to have a couple of bags of blood thursday which is a pain (they're two hours a piece) but I have an appointment with the clinical psychologist at the same time so I'm looking forward to that.

Also I've started doing a lot more exercise, lot of sessions on the WiiFit. It really is killing me not having done exercise in so long, muscles don't know what to make of it having not done anything so strenous in such a long time. Still I know I'm going to have to push myself if I want to get my strength back, I've got an appointment at the Physio Hospital next thursday but really I'd like to start getting advice before that so hopefully I can see the Hospital's physio again in the next few days and explain the situation or find a private physio.

I just really want to be in a situation where I can go and play squash with my friends and do all the normal things I want to do it. Right now when you're struggling to climb stairs and keep up with the walking speed of your parents it can be pretty disheartening. To be honest I'd love to get to a stage where I can run a half-marathon but... one thing at a time :)

Day +104: Living an hour at a time

2009-08-20T06:27:00.004+01:00

Well unfortunately since my last blog things haven't worked out quite as well as I'd hoped. My line removal never happened due to my blood counts taking a turn for the worst, needless to say I was dissapointed. The main reason for this I'm told is a combination of being on the steroids (which I am now off completely, which is some good news) and the virus that I've picked up. It's the Epstein-Barr virus which, from what I understand is very common and most people in their lives at least carry it at some point, naturally they have to keep a close eye on it in me as with my immune system still suppressed it can lead to glandular fever which really isn't something I want to be dealing with at this stage. It was pretty upsetting to see my blood counts take such a dive, plus not to have my line out but with the steroids stopped now that should all start to come up and within a few weeks hopefully be back on track. Besides I'm headed in to hospital in about two hours, so who knows I may find that my counts are way up, here's hoping.

So, that leads me to coming off steroids. In fairness the last few days have been very good, I've had a lot more sleep, I've felt a lot calmer and been using a lot less of the diazapam (mainly just to help me sleep through the muscle cramps at night) but still their are moments of depression, mainly early in the morning or late at night that I just can't even start to describe. I've booked an appointment with the hospital psychologist so I'm looking forward to talking to her about some things and to be fair I know it's mainly just a combination of the steroids coming out of me and a lack of real sleep and that's what I've got to keep reminding myself.

The thing that worries me most is still my mind, again I know its sleep and steroids and maybe slightly some risidual effects from the radiotherapy, but struggling to keep up with the most simple of conversations and trying and add to it just makes me feel like a total moron, not to mention trying to make decisions for myself. Yesterday I was on my own for four hours or so and I was just back and forth doing the most inane things like I needed somebody to tell me what I should be doing, which is ridiculous because theres so much I could be doing, just whenever I try and do some of the more productive ones I either get confused or side-tracked and end up upsetting myself.

When I think of all the crap I've been through, all the chemo drugs, sickness, radiotherapy, tubes down my nose to feed me and being in isolation for weeks I can still honestly say that this stage is the most difficult, there's just no guidance for it and now I'm really a low priority with the hospital all the emphasis seems to be on you to recover and lead half the treatment yourself which, when your mind feels like jelly is pretty difficult, I'm lucky I have my family and my girlfriend to make sense of it.

I'm starting to babble now I can see that. Again, I know this can't last much longer, it's just these steroids and now I'm off them things are already getting better, I just really needed to get these things out and write them somewhere.

Time to get ready to go in to hospital.

Day +98: What a week

2009-08-14T12:36:00.006+01:00

Well after my meeting with the Prof on wednesday there's certainly plenty of good news to report. Although he had very little time for me, the upshot of the meeting really was that all my bone marrow results are fine, my central line's getting taken out next tuesday since I haven't had any transfusions or anything for ages and all the results are looking great. Also, no more drinking boiled sterile water, which is weight off my mind and everybody else looking after me.

It looks like a lot of my pills are coming down or gone completely, I should be off the steroids completely come next monday, although I'm still not getting very much sleep and still with all the mood swings and muscle cramps. It seems like the last stages to coming off these steroids are going to be the most difficult. I'm sitting here now really, really trying hard to concentrate on writing this but my anxiety is going through the roof, it's a very odd feeling. To be fair I am on my way in to hospital in a little bit to have my Pentamadine gas which isn't a particularly pleasant experience, nor is going in to that day unit in general, still my sister'l be there and I've got my diazapam to use still.

So yeah, it's difficult to describe my feelings really. All my friends want to see me and contact me, and obviously I want to see them it's just when your mind feels so foggy and clouded I just can't seem to organise anything. Even just replying to text or facebook messages has me on edge half the time, it sounds ridiculous especially after I've had so much good medical news. I want to be able to just make everyone I know realise why it is I don't reply to messages or try and see them but its living one hour at a time almost, it's exhausting.

From the research I've done and my family have done it is all standard side-effects, I've just never known anything like that, I can't wait for it to be over.

Day +90: Muscle cramps & steroids

2009-08-05T00:14:00.003+01:00

Since my last blog I started doing very well, I saw my friends, had some really good days, was managing to sleep alright and really hadn'y been feeling anxious at all, just taking things in my stride and knowing that things were all going to get better once the steroids were gone. Plus I had all my plans to start getting my programming work back on track, start my disserttation research, etc. etc. and seeing my mates more.

My Steroids are being brought down 2.5MG at a time, I'm currently down to a 5MG dose every morning and thats all but it seems that the tapering down of them is almost as bad as taking them in the first place. It's midnight now and I'm sat here with terrible muscle cramps that just won't let me get to sleep, last night was the same but even worse, I was in agony. In terms of painkillers I've tried Co-codomol, codeine, paracetemol, deep heat and that doesn't really seem to scratch it. I've even just tried one of my diazapam, I don't know, I don't know if that was sensible but it's all I've got really.

I do have sleeping pills but it seems a waste to use one when I know I can't drop off when I'm in pain (it was last night). To make things worse I've developed sores and cold sores in my mouth which have been waking me up whenever the muscle cramps decide to subside. Still I have a course of pills for that so that should be cleared up in 5 days or so.

I've been researching the muscle cramps from the prednisone (or prednisolone) online and its very, very common which makes me feel a little better but it just seems theres nothing I can do about it. Theres no advice, the best I've got is eat advacado and banana's... great. Just when I start to get back to a good nights sleep I'm hit by this crap.

Pain's starting to subside now I've been sat up a while so I guess I'll try and get back to sleep, hopefully it'l keep off long enough for me to get a few hours at least.

Day +82: Man I hate steroids

2009-07-29T07:37:00.006+01:00

Well yesterday was a horrible day, woke up a 1am with my legs in agony, took some painkillers and walked around for a bit and it subsided so I went back to bed. Then I woke up again at about 4am and with exactly the same thing, this time unable to take any painkillers because I'd already taken codeine and paracetamol. I was feeling angry, pissed off and just gutted that yet again I didn't get any sleep. All day I just felt low, tired and anxious, everything I tried to do just screwed up and I got upset. For instance, tried to make myself breakfast, dropped an egg on the floor and pretty much broke down and started crying... just felt like I couldn't even look after myself, I know its all the steroids, mood swings plus the lack of sleep but it just makes you feel pathetic. Still I haven't been taking any of the diazapam or sleeping pills, I've just been talking it through with people and calming myself down, which has got to be a good thing.

Anyway, it was a bad day, I managed too get a bit more sleep later on in the day and felt a lot better. Plus we've figured out that the pain in my legs is due to poor circulation, so last night when I went to bed I made sure my legs were raised with pillows and I slept straight for a good 5-6 hours so I feel better this morning, probably try and get a couple more hours again later on.

With my neutrophyll levels really low at the moment not being allowed to go out to crowded places anyway is really starting to get to me, finding things to do around the house is getting tough, god knows why I've got tons of games and I'm never alone so theres always somebody to do stuff with, plus I want to start working on my Uni work but when I try and do it with not much sleep, blurry vision and a bit of a fuzzy brain it feels like I'm screwing it up and I get all anxious and upset about it. Again I know its the steroids and the radiotherapy and it WILL fade. but right now I just feel useless and I just can't seem to hold on to that positivity I had.

Having said all that, there have been moments in the last week where I've felt brilliant, my friends came to see my the other day and that was brilliant, I felt proper anxious about it beforehand just because I thought I'd be a mess but it was great. Plus sometimes after I've slept well my mind feels so clear and everything just comes together, so I KNOW this is going to get better.

Day +77: What a week!

2009-07-24T08:54:00.005+01:00

Tough to know where to start, it's been a hell of a week.

It's been a week of sleep deprivation, tears, anxiety and mood swings but the steroids are coming down and down now, I'm getting close to being off them though but they do build up in your system so it'l take a while for them to flush out even when I'm off them entirely.

Physically everythings going really well, I'm eating well, exercising (a little too much yesterday, my legs ached like a bitch last night!). I haven't needed any top ups on blood or potassium or anything at the hospital so my body seems to be taking care of itself by the looks of things and the Docs are all happy.

My medications come down quite a lot, I'm not on the Ganciclivir right now so I dont have to hook myself up to that machine at 8am and 8pm everyday, thats been brilliant, all I gotta do is take pills three times and day, not even a massive amount.

I've kicked those crappy sleeping pills now and I'm getting decent amounts of sleep on my own, still not quite enough maybe, but that'l come in time.

As for my head, I'm still finding it quite difficult to concentrate but it's getting better with more sleep. I'm still getting very anxious and worried over next to nothing, I really just need to relax. Literally anything starts to make me get a bit anxious, what to have for breakfast, what to put on tv, what video game to play, when to go home and visit my family, whether I'm annoying my girlfriend or being an idiot to her. The Doctor did give me some diazapam to take the edge off it when it was really bad a few days ago but I haven't been taking it the last few days, just deep breathing and talking to people instead. There's a lot of hours in the day and it can make you feel a bit down when you're not really allowed out of the house. I don't know if I'm 'depressed', I imagine its all just the steroids on-top of everything I've been through so far, they mentioned putting me on antidepressants when things were real bad a few days again but I don't know... I might feel a lot different once the steroids are all gone, but if they help and their safe, we'll see.

I'm off in to hospital today for a while, I'm not taking this one pill any more which means that I have to go in once every three weeks to inhale this gas. I've had it once before, it's pretty horrible but it doesn't last too long. My girlfriends taking me in so if I start getting anxious she'll be there to help me calm down, not that there's anything to worry about!

Ahhhhh it felt good to get all that out!

Day +69: Toughest times I've had, and they're not over yet

2009-07-16T02:48:00.005+01:00

The last few days the steroids have just been wrecking me, I've been trying to survive off a couple of hours sleep a night and it's just been turning my brain to jelly, which has been making me worry about absolutely everything. Eventually today it came to a head, I just started screaming and shouting, I couldn't calm myself down so we went straight to hospital and the Doctor's put me on some dopamine to keep things in perspective and keep me calm.

It was meant to help me sleep tonight and I've had a few hours but it's 3am now so I think they're going to have to up the dose tomorrow. It's hard to say what I'm worried about, pretty much everything, but if they keep the edge off with this valium, or dopamine or whatever they decide to give me I'm hoping it'l keep me going until the steroids come down and I can start sleeping properly again.

A big source of stress is the routine I have to keep every day:

7am to 8:30am - Hook myself up to a machine at home, using hyperdermic needles, saline solutions and have this anti-virus drug. It's called Ganciclovir and it's a twice a day thing so, 7am and 7pm.

8am - Have all my morning pills: intraconazole, steroids, cyclosporin, MMF, potassium, magnesium, penicilin v, septrin.

2pm - Afternoon pills: potassium, magnesium, omeperzole.

7pm to 8:30pm - Again hook myself up to the machine again.

It can only get better from here right :)

My family have been great, they're here 24/7, I just cant cook, or clean, or look after myself, everything I do is a massive amount of effort, just replying to text messages from friends or on facebook really taxes my brain after everything.

Day +64: The Road to Recovery

2009-07-11T15:29:00.009+01:00

Well I've moved in with my girlfriend in a nice house pretty near my old one, all my stuffs settled in, my rooms set up all nice and cosy, think I've managed to lose a few things (this is what happens when your too weak and messed to move anything yourself) but I'm really grateful to everyone who helped me move, my family, my girlfriend and my Dad's mates were stars.

So I'm back on the routine going to Hospital twice a week, doing all my pills at home and my Ganciclovir and its been pretty rough transition to say the least but it's day +64 and day +100 is creeping... ever... so... slowly... closer.... and I'm finally out of the Bone Marrow Transplant ward's clutches and I head back to the AHU. I don't have anything against the BMT Ward, they're been brilliant, the do a fantastic job and they're all fantastic and the consultants are great. The problem comes with the Day Area ward the floor below, to squeeze what you need out of them can be nightmare, it's a wonder a lot patients do it. I'm not gonna bitch about it, it's a tough job and I know they do their best but between pharmacy mistakes and scatty registrars you really realise, you are in-charge of yourself now and you ain't getting a lot guidance.

Still consultants are great, Matt especially is quite happy to ask my questions and is very clear so I stick with his word as gospel.

In myself I've been keeping my spirits up with retail therapy buying games and planning on my buying computers in the future, buying Wii and 360 games to. It's not easy. I suppose I can blame the steroids to a certain to a degree, being moody and that but it can be so difficult to keep your mind focused just writing this blog is really testing my concentration I've written a long entry like this for a while it's really taxing my brain to keep the sentences go coherent (I apologise if they are far from it).

It's difficult to really explain how I feel at the moment, I've been upset a lot really over nothing in particular. I suppose I think back to the weeks of chemo free time I spent just prior to my transplant I think how good I was feeling and it feels like getting back to that stage is going take a long time... I'm really learning meaning of the phrase 'taking it one day at time' which I always thought was going to be one of those cancer cliches (like 'stay positive') but I'm learning the meaning off both in a big way at the moment.

It comes down to this today:

I miss my friends, my indepdendence, my health.

Day +56: Been a rough time

2009-06-25T21:21:00.003+01:00

Well it's been a rough few weeks with, initially I went in to hospital to have the phosgarnate to sort out my CMV virus but that ended up wrecking my kidneys and keeping me in a while even though what little I had seemed to have done quite well with the virus counts. From that point I was was waylaid with temperatures meaning I was put on a lot of anti-biotics trying to get rid of whatever infection I'd picked up. Even more than that I started to develop Graft vs. Host of the Skin and Gut and which had to be treated with steroids as well, so all in all its been a tough few weeks but the Doctor's are all really pleased and its good to finally get the diarrhoea sorted and I'm feeling a lot better than I went in, specially my appetite which is good news.

My family and friends have given me a lot of support and its really starting to seem like I'm getting out the other end of the transplant properly, especially when I get some more energy and start to put on some more weight.

Day +42: Still no news

2009-06-19T20:07:00.002+01:00

Today's been pretty rubbish, I've been sleeping all day really and hardly eaten anything, relying really on diet drinks. I've had some diarrhea, high temperatures, shivers, shakes, headaches, sickness.

All in all a pretty crap day and I'm getting pretty concerned the Doctor's cant find out what's wrong with me. I had to go down to the day area this afternoon to have this alternative drug, pentamadine as the pill equivilant is probably wouldn't be good for my kidneys and kidney functions still havent returned to normal yet. This alternative drug had to be given as a gas and it tasted nasty.

So they've said they'll monitor me over the weekend, they'd really like to get rid of me really since they're very short on beds but obviously until they know why I get these temperatures of over 39 they can't do that.

Day +41: After a few bad days

2009-06-18T12:19:00.002+01:00

Well after a few days in Hospital of feeling pretty crap I've woken up today feeling a hell of a better. I was getting really concerned about the diarrhea, I've literally had it since I was discharged and they were close to sticking a camera up my arse to find out what was going on. Luckily it turns out that the magnesium tablets just don't agree with me and since I've stopped taking them I've been fine. This is doubly excellent because those tablets were bloody horrible.

I'm still running a fairly high temperature for some reason, yesterday I started getting headaches most of the day which paracetemol didn't really touch so I had to get on the Cocodamol. I've had them today as well but they seem to have calmed down for now. Another strange thing is that I've thrown-up after the last two lots of pills I've taken today, which is very unusual for me. Possibly because I've tried to take them on an empty stomach and now my stomach is slightly more normal it doesn't appreciate that.

After I get some blood results back, to check with I need a potassium top-up or not, I should be able to go out for a while and possibly stay at home tonight if I don't need any fluids or anything, which would be excellent. I've taken on-board some of the comments I've had on my last blog comment, I really do need to have somebody around, I can't be on my own at this stage being so tired all the time. I've moved in to my girlfriends place now but unfortunately she's just started a placement as a teaching assistant in a primary school back where her parents live so she's there during the week and only with me on the weekends. Still that's only for a few more weeks.

Day +34: Sorting out this virus

2009-06-11T09:03:00.002+01:00

I've been taking the Ganciclovir at home now for over a week and its clear from the blood tests that the virus counts aren't going down. The good thing is this means no more doing the Ganciclovir at home and hooking myself up to that syringe driver for a couple of hours a day. The bad news is that I'm going to have to be admitted while I have this other drug called Phosgarnate, plus its pretty nasty stuff, after only a few doses its started to affect my kidney functions and it means I've got to have a lot of replacement fluids like magnesium and calcium. The Phosgarnate makes me pretty sick but its only temporary.

So I'm pretty gutted about that but at least it means getting rid of this virus at last and my Doctor says it should only be a few days of treatment. I'm hoping which the virus gone I'll start to get my appetite back some more, that's really what's concerning me at the moment, I'd hoped to be feeling a little better than this at this point. I mean I know I can't rush things and most people at this stage don't feel anywhere near as good as I've been over the last couple of weeks but its just frustrating not to be able to eat properly, stops me trying to get fit again really.

The last few days have been a bit of a struggle, being on my own at home, it's difficult to find the motivation to cook and all that after a while. Still I've seen a few friends over the last couple of days and I'm going to see a few more over the next few days so I'm looking forward to that. I think just being alone makes everything seem a lot worse, even though I've been through a lot worse than this already and felt a lot worse.

Day +26: Got my exam done!

2009-06-03T15:45:00.002+01:00

Well yesterday was a bit of rough, and utterly pointless day, in hospital but they let me out at 9pm to come home so I could get a good nights sleep before my exam even though I had a load of medication to come home and do once I got back. Still I slept well and made my way to the exam, still a bit worried I was going to be stuck in a little room with loads of other people but as soon as I explained it to the envigilators they sorted it out and I was put in to a computer room with just one other person.

The exam itself went alright, it was kinda cobbled together from first year lecture slides and loosely based on the project we've been doing this year. Some of the questions weren't even in proper english... another victory for higher education. At least thats one less module I don't have to do next year, should make for a far easier year. I think my chances of getting a first rate degree have slipped thanks to this but I think I should get a good 2:1 and hopefully if its a high enough 2:1 I can have a review on my effort and get it bumped up to a first.

Well I'm in hospital tonight by the looks of things seeing I'm on this course of antibiotics I can't take at home, which is a shame but I don't think it'l be more than a day or so, I feel good in myself and the Doctor's definately know that so we'll see. Hopefully I'll get home for the weekend to see my family and some of my friends.

Day +22: Good to be home

2009-05-30T16:16:00.002+01:00

Well after having to show the nurse I could do my ganciclovir again last night I was finally discharged. I left the hospital with a lot of pills, gloves, syringes and medicines but at least I'm out. Feels good to be home and plus with my girlfriends housemates moving out this weekend I can start to settle in a bit more and more a lot of my stuff in to the empty rooms.

I'm not sleeping so well at the minute, I suppose just because it's so different to sleeping in hospital but I'm getting a fair amount of rest. The most annoying thing is waking up early to administer the ganciclovir but hopefully I'll be able to streamline that so it gets easier. Plus with my viral counts down to half already I shouldn't be on it much longer.

I've still got this one exam scheduled for Wednesday next week so I'm going to give the Uni a ring on Monday and see what I can do. If I can take it in a room on my own, with just an envigilator, there wouldn't be a problem and it is only an hours exam. Still if I feel up to doing it now it might be a good idea, since if I was ill for the retake in August I'd miss my last chance and have to do the whole years module all over again.

Day +15: Bit of a set back

2009-05-23T14:14:00.004+01:00

Had a bit of a set back unfortunately I managed to get a virus so I'm still in isolation, I thought I might be on the normal ward by now but obviously they can't let me out of isolation now for a while. The Doctor's still don't seem phased and besides I take my cue from Prof. Marks really, if he's not concerned about something then neither am I.

Definately starting to run out of stuff to do here in isolation so hopefully like they said I'll be out for at least some time next week.

I havent sat and listened to music for a couple of weeks now, I don't know why its something I always forget about in hospital. Started listening to my last.fm library today and it made me feel a whole lot better. Looking forward to getting out of here and playing some music, that's for sure.

One thing I realised last night is that the next 90 days that I'm under the supervision of the BMT Unit are really going to be a test, okay I'll be getting better and better but it just kind of dawned on me how much more time I'm going to be spending in here when. Not just for day appointments but obviously every time I'm ill as well. It's a pretty crappy thing to think now, since I really want to get out of here, but still I suppose it'l only get easier at the end of the day.

Day +12: Almost out

2009-05-20T13:05:00.002+01:00

Well the Doctors came in and told me that my neutrophil count is up above 1 now so the graft is taking well and they even said they would move me downstairs to the normal ward if there were any beds (which they aren't!). So hopefully in a couple of days I'll be out of isolation and allowed out for a few hours a day. I could definately use some fresh air.

So I'm over the moon really, everythings looking great. I've got to keep an eye out for signs of the graft vs. host like rashes, I do have a rash on my stomach but the Doctor's don't seem worried about it, they just told me to keep an eye on it. I'm still feeling good, a little tired now and then but not too bad.

Day +11: Through the worst

2009-05-19T11:53:00.002+01:00

Well the last 4-5 days have been a bit rough, my throat got so sore I had to get on the morphine which really helped with the pain, still being hooked up to the drip literally 24/7 is a pain in the ass. Plus the stuff made me wretch quite a lot to start with which, considering I wasn't eating anything was uncomfortable. Still it was a bit of a relief for the Doctor's to come round and say "This is the worst of it now" rather than, "You'll feel worse tomorrow".

In the last few days however I've been feeling a lot better, my mouth never got sore but it did start getting full of mucus and feeling really dry, it was good to get on the morphine rather than waiting for painkiller pills every 3 hours. Plus now they put all my oral meds down the NG tube so I don't have to swallow any pills, something that was starting to get difficult.

I've got in to the schedule in isolation now so the days are going by pretty quickly, definately glad I have my laptop with me. I think the most frustrating thing really is how much effort it takes to do even the simplest of things. To get up and do anything I've got to unplug all of the pumps I'm connected to, drag that around with me in a pretty small room. Still I'm pretty used to it now.

I woke up this morning and my throat felt a lot better than it did yesterday, hardly any pain at all. I'm still not eating a great deal but with the overnight feeds still going on thats not too much of a problem.

So hopefully it'l only be another week or so and I'll be out and back home. There is something that's bothering me though, I feel like I've lost some of that sense of urgency about the whole thing, like I've become a little to laid back when really there's still a long way to go and a lot of stuff that could happen. I've had so many big plans that I want to realise when I'm better, I don't want to get lazy and have them fall by the wayside. I don't want to just live off the benefits I get and lose that ambition to achieve the things I want to, I feel so out of touch with my work and I've no idea how I'm going to start getting fit again. I've really got to keep focused and make sure I don't let this slip, I know it sounds a bit wanky but when you're given a real appreciation of how important it is to live your life you don't want to lose that.

Day +4 in isolation

2009-05-12T11:10:00.000+01:00

My blogs have been a little thin on the ground recently, mainly because I haven't really felt up to writing a great deal, I'm feeling less tired at the moment but I'm still on that downward slope of feeling worse and worse every day, hopefully it'l be one week getting worse and then one week getting better but the Doctor's can't really give you a timescale when its different for everybody.

My throat's getting more painful but I'm on a lot of painkillers so it's pretty manageable at the moment and there's always the liquid morphine to go on to when it gets really bad.

Starting to get used to being in isolation now, it sucks being hooked up to the machines all night, especially being on the nasal gastric feeds for 10 hours. I'm eating bits and pieces, cereal, chips, toast, as well as the build-up shakes and ice cream.

The nurse just gave me a chart of my blood results over the last few days, my haemoglobin is sticking around 10 which is good, my neutrophils are down to 0.08 so not quite all the way down yet. Apparently they'll hit zero then I'll get an infection and then they'll pump me full of antibiotics.

It's just a waiting game really, my family and my girlfriend are here a lot so I'm not on my own much. I tend to just spend all my time watching films and comedy series, not a bad way to spend the day.

Day +1: Conditioning and Transplant done

2009-05-09T16:51:00.002+01:00

Been a bit of a while since my last update, the conditioning all went alright. The weekend of chemotherapy last weekend went pretty well, all the Cyclophosphamide went down a lot better than it normally does, I didn't feel sick at all really. The Campath gave me a rash but it just meant more piriton which was fine.

The monday after I went back to the apartment I still felt okay but when I had a pretty rough nights sleep sweating out all the drug's I'd had so I felt rubbish the next day.

The TBI was Tuesday to Friday, it was pretty straightforward. It's a pretty weird experience all in all, first you strip down to your underwear then they put this sort of string vest thing over your torso and another around your neck. Then they fit the wax head mould that they made a few weeks before. They put some sensors inside the vest and on your head to monitor the radiation levels and then I lay down on a bed and... that's about it really. They come in and move me around sometimes but its just 8 beams of radiation, takes about 20 minutes.

So with that done last night was the transplant, it was a bit of an anti-climax but I enjoyed myself seeing as I was high as a kite on pethadin and piriton. An hour or so of stem cells then it was all done, now I'm in isolation for the next few weeks! Spent my day just watching a whole Series of Only Fools and Horses and disney films :p

Start of conditioning

2009-04-29T15:01:00.002+01:00

Well I've had my first couple of days of the conditioning period (the 11 days prior to the transplant that'l wipe out my own immune system), just the CNS boosts so far which have been pretty straight forward. They're just short blasts of radiation to my head, they mould this piece of plastic with loads of holes in it around my face and than strap it to the bed to keep me in place and mark certain sections.

Side effects have been pretty manageable, headaches, tiredness, my jaw's starting to get a bit sore but then I've only got two more of the boosts then I'm done.

By the sounds of it the weekends going to be pretty epic, I've got the cyclophosphamide, campath and hydration so I'm going to be hooked up to a drip for about 3 days straight really. It doesn't sound like I'll get much sleep but I've got monday to look forward to as a bit of a rest day before the TBI starts.

So far so good really.

New Transplant Date

2009-04-17T08:55:00.004+01:00

I was given a new date to go in to Hospital, so I'll be admitted on the 27th of April and transplant day should be the 8th of May. They decided over the easter weekend I needed a top of chemo, not a whole regime just 4 days of cytarabine and 5 days of steroids. It hasn't affected me too much, my haemoglobin got pretty low at one point and I started feeling pretty tired and getting some headaches but the transfusion I had last friday seemed to sort it. I'm still getting some mild headaches in the morning and at night but only very mild ones, to be honest I feel better now than I have in ages.

It's been a weird few weeks, I know I say that a lot, but I've been off the chemo for weeks and I'm feeling pretty normal for the first time in months. Apart from how unfit I feel obviously, I'm still looking forward to getting my fitness back. This couple of weeks respite has made me lose track of the situation a little bit, I'm trying to look forward to what happens after the transplant but none of the Doctors seem to want to tell me what exactly will happen. From what I can tell its pretty different for each person, dealing with the graft vs. host and that... but they haven't even given me a for instance which makes it difficult to plan where I'm going to be or what I can do when I get out of the hospital.

One of the transplant coordinators just phoned me to say I have to start the palifermin this saturday, I have to have it a couple of days prior to the CNS Boosts. He's going to be emailing me a regime through later on today. Everyones asking me if I'm nervous yet, or anxious about it all and to be honest I really don't think I am. Having come out the other side of those chemo regimes I've started to look back on them as a challenge that I got through and that the next six weeks I'm going to spend in hospital will be much the same thing, a challenge that I'm just going
to take on and come out the other side of. None of the Doctor's seem to be worried about me, I've got a very good match for the transplant and I'm fit and well going in to this, if they're not worried why should I be?

To be honest I'd quite like to talk to them about how I'm likely to be feeling post-transplant but I don't want them to think I'm not taking the here-and-now seriously enough. I know its going to be pretty dull six weeks and I'm going to be feeling horrendous for quite a lot of it, but what I've realised from recovering from this last lot of chemo is that it really doesn't take all that long before your body sorts itself out. I realise this will be on a whole new level and I'm going to be feeling even worse than last time, but at least I've got the palifermin not to mention my parents, my sister and my girlfriend will all be around. Plus it's all as an in-patient, I don't have to endure anything at home and wonder if I should be calling the hospital.

Anyway this week before I go in to hospital should be a good one, I'm going to see a friend wednesday night and friday night I'm going to cook a meal for my housemates and a few other friends. Hopefully I'll make it down to Weston on thursday as well to see my old boss, he's mentioned he might have some work for me over the summer, which would definitely keep me busy. I think of working for him from July through to October when I start uni again, it would be good to get some money for the summer, not that I really need it at the moment. I'll have to see how I feel, I might be better off just concentrating on getting my fitness back and just staying with my parents for the summer, I'd be around all my friends as well. We shall see.

Transplant delay

2009-03-30T16:04:00.002+01:00

Not much been going on the last few weeks, I havent been on any chemo since I'm well in to remission so I've been feeling good. Still going in for ambisone and various tests and checks in preperation for my transplant. I was given a transplant date of a couple of weeks time but it turns out my donor cannot make a Tuesday or a Thursday and according to the coordinator it has to be one of those days. So they've moved on to my backup donor and I'm currently waiting for the results of the high resolution matching tests to see if this donor is as good a match as the first one.

By the sounds if it there's going to be a three week delay, I was given a date of the 6th for admission to the BMT ward but now its looking more like the 27th. I'm going to see Prof. Marks on Wednesday and by the sound of it I won't be having any more chemo in the mean time, which is great, though a little bit worrying, I wouldn't like to think it's giving the disease a chance to come back, but obviously the Doctors know best.

I've had a few appointments down in Radiotherapy one for a test dose and another to have a mold made of my head. The technician even went to the effort of making the full head mold even though I don't need it... just because I wanted to keep it after they were done with it! One of the Doctor's down in radiotherapy talked to me about the possible and likely side-effects of the treatment. It was another conversation I was dreading really but you've got to hear it, the short-term effects sounded pretty bearable like cataracts, skin irritation and mouth sores (which hopefully should be made easier with the Palerfirmin). More worrying are the long term effects, it was made pretty clear that I'm likely to develop another cancer in the future and he mentioned that the treatment essentially ages your brain so I may develop dementia-like symptoms in a decade or so.

At the end of the day though, if I developed something like skin cancer it is very treatable and who knows what advancements there will be in the future, plus I'd be very aware of looking out for early symptoms. As for the dementia... well... the amount of marijuana a lot of my generation smoke I think I'll be in the majority of 30-year-olds who suffer from that kind of crap.

I was just reading the Leukaemia CARE magazine and there was a story about a 20-year-old girl who was diagnosed with CML in the middle of her degree. She decided to carry on with her work, it made me realise I've really got to find some sort of normality in the 6-months following the transplant, because it is a long time. Hopefully I can spend the time between now and the transplant feeling good and trying keep a relatively 'normal' regime.

Good news

2009-03-15T19:50:00.002Z

My Doctor phoned with me with the results of my MRD, it came back negative so there's no need for me to have any of the neurotoxic chemo (like the vincristine), so that should mean I get a couple of weeks off chemo. I've got an asparaginase injection on tuesday but thats it really, no more cytarabine, just ambisone.

So I'm in to molecular remission, I've got an appointment booked for a test dose of radiation on the 23rd, I meet my transplant coordinator and have a load of tests (dental checks, echocardiagrams) on the 26th.

Things are moving along pretty quickly, I'm just glad to have a couple of weeks off at the moment, I'm not thinking about about the next stage too much, but I am looking forward to getting it all started. I had a deadline for unversity the other day, luckily my course leader phoned me up to remind me which was good of him, hopefully I'll be able to make the exam date in August otherwise I'll have to do it all again next year.

Still waiting on MRD result

2009-03-10T18:41:00.002Z

It turns out I haven't had my MRD bone marrow result yet so I don't know whether I'm in molecular remission just yet, still my doctor's already decided I'm not going to have any more of the Vincristine which is good news because between the pain in my feet and the weakness in my hands its really starting to affect me. Hopefully though I'll be in to low risk territory now but either way I have my introduction to radiotherapy and the conditioning booked for the end of the month.

I have to go for a test dose of radiation, they're going to make a mould of my head apparently so it'l keep me totally still when I lay in there. Also I have to have an echocardiagram, dental check and several other checks before it all goes ahead. I'll be meeting with the transplant coordinator as well so hopefully they can give me insight in to what happens next.

They managed to secure me some Palifermin, though we're not sure how much for at the minute, hopefully it was around the originally £3,600 mark... not the £20,000 that was mentioned. Least we have it though, that's the main thing.

Out of hospital again

2009-03-04T11:30:00.004Z

Well I went back in to hospital last week with a temperature, didn't feel too bad just a bit sick and that but I ended up staying in a whole week on another course of antibiotics. Three infections in three weeks, must be some kind of record, I've spent more time as an in-patient than an out-patient.

I'm out now anyway and after a little while of letting my blood counts recover I'm back on the second half of this chemo regime. So far it hasn't been as bad as last time, the cyclophosphamide made me feel pretty sick but it wasn't as bad as last time. The cytarabine four times a week is okay, again makes you feel a bit sick and you lose your appetite a bit which doesn't help with how much weight I keep losing but I can tell it's not going to be as bad as first half of the regime.

My bone marrow results all came back fine so I'm in to molecular remission now, which is great news. This should mean once I finish this regime in the next few weeks I can start my condinitioning for the transplant, the consultant told me I should be due for transplant in 4-6 weeks but I still need to meet with the doctor in-charge of my case really to find out exactly how we're going to proceed. Chances are once this regime's done I'll be on the full-body and cranial radiation, as well as high-dose chemo, how much of that is done as an out-patient I'm not sure.

I'm feeling alright about it all at the moment, taking it in my stride, my family have all been really helpful with taking me to the hospital and sitting with me and that, it was getting a bit depressing just being sat in this day area on my own every day. I feel like I'm starting to get pretty distant from my friends these days though, mainly because... well I don't have a great deal going on in my life aside from hospital visits and treatment and I don't want to harp on about that to them all the time and when they're all busy organising trips and events etc. it does make me feel pretty gutted I can't be involved. Still it won't be for much longer, that's what I've got to keep in mind, come October I should be able to do anything I want again :)

I haven't been taking my 'clean diet' all that seriously in the last few weeks, going out to restaurants most days with my family. I've been avoiding all the things I'm not allowed, but I was still told not to out to takeaways and restaurants. Plus if I'm honest I've been to more crowded places than I should have been, so I've got to start taking that more seriously really. Although I am still convinced the infections I've caught have been from other ill patients in the hospital...

For the most part though everythings going well, I'm getting a lot of support and there does seem to be an end in sight, even if there is a lot of very daunting stuff to get over first.

odd few weeks

2009-02-21T20:45:00.004Z

Updates have been pretty few and far between on here I appreciate, for a couple weeks I've just felt pretty terrible. Not just with headaches and tiredness but its just seemed like things have been piling up more and more and there was no end to it really with test results, stastics, side effects etc.

Still, since I was admitted to hospital Monday the 9th I started to feel a lot better. I was in for two weeks all in all, first with a line infection and then with a cold. Luckily though I managed to get out for Valentines Day and spend it with my girlfriend, shame I was straight back in to hospital the next day! But still it was a great day. To be honest other than having a temperature I felt find in hospital really, I really wish I'd used the time more productively and got on with some work when I was feeling good but unfortunately my tutor's such a moron he's put some of the necessary parts of our assignment on our University computers... where I can't get them. Lucky I'm good friends with my year otherwise I wouldn't be able to do the assignment full stop, honestly the man's an idiot. I went to see him the other day to explain my situation to him and he was asleep in his office.... I mean for god's sake you've only got to work a few months of the year as a University tutor, least you can do it be awake at work.... prat.

This weeks been a recovery week luckily no chemo, though I've been feeling quite tired I think thats more due to not getting much sleep either being too hot or too cold at night rather than being short on haemoglobin, hopefully my counts have been going up this week, I haven't been keeping much of an eye on it all recently.

My first week of hospital has put me right off hospital food, I think I only liked it last time because I was on those steroids and would of eaten anything. So I managed to lose 3kg that week thanks to dishes like baked bean and corn beef hash... yum... Therefore the second week in hospital I made sure that I went out for lunch every single day with whoever was visiting me, had a few damn fine pizza's and the rest of time I scoffed sandwiches or chocolate.

I had another bone marrow test monday, so I'm due an assessment friday to find out exactly what my next course of treatment will be. Chances are I'll be back on the cyclo and cytarabine again, but hopefully not, may even start my radiotherapy but we'll see. Looks like we'll be paying for the palerfermin (drug that helps with the mouth sores during the transplant) ourselves since the NHS and my medical insurer refuse to pay for it. Still my insurer owes me £2,000 for in-patients stays so that should go quite far too covering it anyway hopefully, still need to find out exactly how much it is.

Been a little while

2009-02-10T13:43:00.005Z

Well I haven't done this for a while so I thought I better get to it, I've had a pretty rough week or so with symptoms and the like, I've been feeling much better since sunday afternoon though. Ironically, even though I feel right I am back staying at hospital again at the moment since they're a bit worried about my temperature and some other things, worried I may have caught something but my temperatures gone down so hopefully I won't have to stay here the full 5 days they normally keep people in for.

They were pretty concerned by the headaches I'd been getting, obviously they'd seen something on the MRI scan that didn't look quite right and the possibility of Arachnoiditis was raised. Looks more like however that theres been some kind of leak from the lumbar punctures and it must be healing up now because I haven't had any for a while now.

I'm getting pretty sick of having to come in to hospital every day, if anything I probably wouldn't mind being admitted the whole week and just going home at the weekends, at least then you dont have to get somebody to take you in and out and then sit in that day area for 7 hours or so. Still, I don't have any cytarabine this week so hopefully I should get Thursday too myself, that's if I get out of Hospital before then!

Another long week

2009-01-31T09:34:00.002Z

Well I got discharged from Hospital on monday after all my chemo, managed to persuade them to keep me in the whole day rather than pushing me in to the day area since I felt pretty rubbish. Plus I had no food with me so I would have been absolutely starving all day. The Cyclophosphomide and the IT chemo really knocked me, infact it's the first time I've vomitted since all this started, that drive home was no fun at all.

I felt pretty crap throughout tuesday and most wednesday, headaches, tiredness and nausea but it started to ease of wednesday evening. Wednesday my parents and I met with Professor Spencer Marks (my consultants husband) to discuss my transplant. Again it was another meeting of pretty upsetting facts and figures, but I have every confidence in him, he seems brilliant. The first thing he said to me was that they are very confident of a cure for me and I could tell he wasn't the kind of person to say that unless he really meant it. He's been writing papers and conducting studies in to ALL, he was leaving for the US in the next few days to present a paper on their findings, so I'm confident he's the man for the job.

Wednesday was also my 22nd Birthday... probably not the best birthday I've had! But still in the end it turned out pretty good, I started to feel a lot better in the evening and I got some briliant presents from my friends and family, plus I watched WALL-E. I was pretty suprised when the nurses in the day area came round with a card and a little cake for me, it was very sweet of them.

Thursday and Friday I've been feeling okay, pretty tired and the odd headache but I'm eating a lot better. My sister came down and took me to the Hospital both Thursday and Friday which was good, it was nice to have somebody there for a change. Thursday's treatment was pretty quick which meant we could head down to the pub after, where I had a cracking sausage and mash. Friday however we were not so lucky. Arrived at the Hospital at 11:30am, I think I got home at about 10:30pm. I had to have a couple of bags of blood, which in itself takes ages, then I had to go down for an MRI scan of my head just to make sure these headaches weren't anything serious (I'll get those results on monday I suppose), the porters took ages as did the scan, then the porters managed to lose my notes so I couldn't carry on with my treatment until they were found.... then the fire alarm went off.... it was a long day.

Still today promises to be fun, got all my mates round for my birthday, gonna play some games and that, should be good. Just a bit worried since I woke up this morning and the wound where I had that biopsy done back in december feels really tender and sore all of a sudden, I'll give the hospital a ring in a bit I think and ask them about it.

In myself I'm feeling... alright. I'm pretty worried about all the facts and figures that the Professor gave me about the transplant and the cranial radiotherapy but at the end of the day it still sounds like the best route to cure and if he's confident then I should be to.

A rough week

2009-01-25T13:30:00.003Z

My parents and I met with my consultant on Friday and while there was no terrible news, it still seemed like a pretty devastating meeting. I hadn't had any proper sleep for days so to be fair any bad news would have seemed a hell of a lot worse than it really was. I suppose the news wasn't really even that bad, of the three test results from the bone marrow test one of them came back positive. This means that I'm going to be stepped up to a slightly more intensive chemotherapy regime, which is a bit gutting but looking at the regime I would have been on anyway it doesn't really seem all that different, I would have to be in every day for both of them anyway, one of them just lasts longer.

The other thing is that its now been recommended that I go for the bone marrow transplant, I've got a meeting going in to more of the details of it on wednesday. They say there's a very good chance of finding me a suitable donor since I'm such a common type, so that doesn't sound like much of a worry. The upshot of it as well, by the sounds of it, is that its a much faster route to overall cure. My consultant basically said theres a choice between having the transplant in a few months time or having several years of chemo and radiotherapy, it sounds like they've consulted loads of specialists about it, including some leading expert in America and they all concur that a transplant is the best way to go. I suppose none of this sounds all that bad but when she started reeling off this list of possible complications, side effects and survival rates.. it was pretty tough to listen to on so little sleep.

Anyway it's all sort of settling in now.

----

Ended up heading in to hospital last night, had a pretty bad headache I just couldn't shift with the painkillers I had, feeling alright now though. Saves me driving in for today's chemo at least! Starting my new regime today, 4 and a half hours of Cyclophosphamide, IT Methotrexate and an hour of ambisone... so it's going to be a long day but at least I've got a bed. Doctor's have just been round, they don't think a scan or anything is in order, the headache still there though its nowhere near as painful as it was. I'm a little confused as to what's caused it, since I haven't had any chemo for days.

More than a month since diagnosis

2009-01-21T03:47:00.005Z

Woke up at 3am again, feel like I haven't had a decent nights sleep in a month. I thought I slept fairly well last night but I still felt absolutely shattered all day, strange thing is the day before I felt pretty good and I got next to no sleep the night before that...

I'm still hoping it's down to the steroids but I don't know, I've been getting a lot of indegestion and heart burn over the last couple of days which has been keeping me awake as well. Everything I eat seems to burn and my appetite's nowhere near as much as it was before. They mentioned possibly increasing my ranitidine dosage, I'll mention it to Jenny on friday, but at the moment I'm just taking some gaviscon indesgestion medicine now and then.

Really it's the tiredness and lack of sleep that's really start to get to me, I've said before I'm bad enough normally when I'm tired but haven't not slept properly in so long it just makes everything else seem so much worse. I don't really feel all that sick or anything else but being tired I just worry and get upset about nearly anything, not to mention the fact I hate feeling this grumpy and irritable all the time.

Worse than that it's my girlfriend I feel for the most, my family see me every few days or every week or so, she sees me almost every day and is the one that really bares the brunt of the fact I'm grumpy and upset. Sometimes all I think I'm doing is bringing her down, when really she doesn't deserve any of this, I know nobody deserves the situation but sometimes I just think she'd be far better off without all of this.

I can't believe it's been more than a month since the diagnosis now, doesn't feel like that long at all, things are starting to settle down I suppose but I'm hoping the second stage of chemo's going to go a little smoother... or at least just let me sleep a little easier.

Big day today..

2009-01-16T04:18:00.004Z

4:18am, not a lot of sleep again but I'm trying to be more disciplined about getting out of this living room and going back to bed for a few more hours sleep.

Today's going to be pretty epic. Get to the hospital for midday for:

1 ) Ambisone

2 ) Bone Marrow test

3 ) (possibly) another intrathecal

4 ) an hour drip

Looks like another 7 hour session so I'm gonna get a taxi down there.. and make sure I cook myself a big pasta salad to take with me and don't forget a fork this time.

To be honest, I'm kinda nervous, it's a lot of treatment but I really want those results from the bone marrow. From talking to Jenny the results of this bone marrow really determine my treatment for the next month or more and I'll find out exactly how much my counts have recovered.

Big day, I'll write more later.

----------------

It turned out I only had the ambisone and some IT Chemo today, the bone marrow needs to be taken straight to the lab and tested so trying to do it on a friday afternoon wasn't going to happen. So I've got the bone marrow test on monday but my blood counts are really good so we're going to go ahead and change around some of my drugs.

As of now I get to start taking less and less of the dexamathosone (the steroids), which is brilliant, and on sunday I have to start taking the Mercaptopurine.

I'm headed back home this weekend to see my family and my friends so should be a good weekend! Feeling pretty good, the sickness has been calming down and I've got some other pills that should help anyway.

Right, I better get some more sleep, busy day ahead :)

Good weekend but knackered

2009-01-13T02:20:00.002Z

In bed at 9pm... awake at 1:30am... really looking forward to getting off these steroids.

I had a good weekend, mum and dad came down saturday and cooked us a meal and we watched Overboard (romcom classic). Few of my mates came down saturday/sunday as well, really good to see them, played a bit of Wii and... yeah, cooked some more food. Cooked an absolutely cracking leg of lamb sunday night, with apple pie for pudding. All those episodes of Come Dine With Me and Masterchef are starting to pay off.

Monday was a bit of a joke, had a meeting with the student advisors at 10am, which went fine, got all the information I needed about Student Disability grants and that... more bloody forms to fill out, be glad when that's all done. Right after that the hospital phoned me to ask why I wasn't there yet, turns out they got my appointment time wrong and I was supposed to be there for 10am. So I went straight there from Uni, without any of my stuff, got there just after 11 and was there until 6. I only had 2 and half hours of treatment, I have no idea how it lasted 7 hours.

Feeling pretty sick at the moment, I took the anti-sickness they gave me but it hasn't helped all that much. It started yesterday morning really so I'm not sure what set it off, just general nausea from chemo I suppose. Right, I should probably see if I can't get back to sleep...

----

Bit of a bombshell..

2009-01-10T04:03:00.005Z

Yesterday was a lot of information to take in, I had a meeting with my case consultant and my specialist nurse, finally raised all the lifestyle and safety stuff that I'd wanted spelt out for me.

The first thing I spoke to Jill (my specialist nurse) about was my parents. Obviously I want them to be involved in everything, otherwise they're just going to worry and with all the good will in the world I don't think they would trust me 100% trust me to tell them absolutely everything. So Jill says she can do regular phone appointments with my parents and let them know everything that's going on, I think that would put their minds at ease to have a direct line to somebody like that. I don't want to have to worry about them worrying if you see what you mean! Plus Jill said that Jenny (my consultant) could always ring them now and then to let them know exactly how treatments going as well. So that was all positive.

What else... I spoke to her a lot about lifestyle stuff and exactly how strict I'm going to have to be about going out in to crowded places and all that kind of thing. To be honest I knew what she was going to say, I just really needed it spelt out for me. In fairness she did say that if I wanted to plan a trip or a day out I should just keep an eye on my blood counts and see how I feel but for the most part it was pretty much a resounding 'you cannot take part in social situations'.... Now I'm 21. I don't go out loads. But my age group goes out to clubs, bars and gigs. To be fair, out of all of me and my mates I probably go out the least and I had been starting to get real bored of going out to the same shitty clubs in Bristol... but still, to be told point blank how careful and aware you've got to be about it was pretty devastating.

With all my best mates spread across the country at different Uni's I'm pretty gutted that I don't have the freedom to just jump in the car and go see them whenever I want, primarily because I can't be too far from the hospital... I'm not looking forward to saying to people "sorry I can't do that... I have no immune system", that's gonna sound great..

Even just thinking what I'm going to do when my parents come down today is difficult, I'm not really supposed to go to the cinema, though if it was a quiet showing it would probably be fairly safe.

I did ask her about gigging and that, obviously going all the way to Brighton to do gigs is pretty much out of the question (gutted...) but I think again if I keep an eye on my counts and I'm feeling good there's no reason we couldn't keep gigging now and then. Might have to skip the sound check and just turn up for the gig, get George and Ben to set everything up... be a fucking pain in the ass but better than giving it all up surely.

I mentioned exercise as well, Jill really just told me to do whatever I want, obviously I'm going to be knackered a fair bit, so just do what you can.

So after talking to Jill I got to speak to Jenny about the next stage of my treatment. Although it is all pretty dependent on the results of my bone marrow test at the end of this cycle, it looks like I'm going to be in hospital every single day. Monday's will be a 4 hour drip and an intrathecal... which is a quite a lot, but then the rest of the week is just quick injections so hopefully overall I'll be spending less time in the hospital overall. Looks like I'll be off the steroids fairly soon as well, which is a relief because I hate not being able to sleep properly.

At the moment it's looking like I'm not going to need the bone marrow transplant, although really it depends on the results of the MRD bone marrow test at the end of this regime. I'm really hoping I don't need it, it would definitely be a weight off my mind.

Also I've got somebody coming to talk to me about Radiotherapy, which is likely to start after the second regime of treatment. I'm pretty worried about that, to be honest, mainly because I know nothing about it I suppose but still it just sounds a hell of a lot scarier than being pumped full of drugs.

So that's where I'm at really, it was a lot to take in, and a lot of it is pretty shocking. I think I'd partly kidded myself that I was going to be able to swan in to hospital a few hours a week, have some drugs, feel a bit shit now and then, and eventually get better. Lot to take on board.

Treatments

2009-01-09T05:10:00.008Z

5:10am.. again didn't sleep all that well, still I'll probably head back up to bed in a little bit, try and get a couple more hours sleep, haven't got to be at the hospital until 11am today. I've gotten to wondering... can you take all this stuff too seriously?

I know treatment and being careful with lifestyle stuff is important, but it seems like at the moment that's all I'm doing. Sorting out benefits, reading up on treatments, the leukaemia and obviously going in to hospital three times a week and doing this blog... to be honest I'm just looking forward to University starting up again and my housemates all getting back, hopefully things will get back to some kind of normality.

----------------

Thought I'd give a little break down of the hospital treatments I'm on, so here are the chemotherapies:

Asparaginase - A colourless fluid. I get this injected in to my leg muscles as two seperate injections, it's fairly painless. From what I've read the possible side effects are pretty standard for this one.

Daunorubicin - A red fluid. Since I'm on a pediatrics regime I get this as a drip in to my central line, again the side effects are the standard ones you expect from chemotherapy, but all the material I've read says it effects different people different anyway.

Methotrexate (IT Chemo) - A yellow fluid. When I mention IT Chemo, or intrathecal's, or lumbar punctures, this is the treatment I'm on about. They involve me lying on my side and a Doctor numbing part of my back with local anaethetic and then using a really small needle to get through to the fluid that surrounds my spine/brain. It's probably the worst of the lot, I had one Doctor catch a nerve a few times and really hurt me, you have to lay flat for a couple of hours after as well to avoid headaches so it does take ages.

Vincristine - clear fluid, pretty sure this is just given as a drip through your central line as well. This is the one that makes your fingertips go numb, something I've definitely noticed. The Doctor's said if it gets any worse to let them know and they'll cut the dose, but so far it's only been pretty minor.

Ambisone - A clear/greeney fluid, given as a drip through your central line. It's an anti-fungal chemical, combats infections from airbourne spores. This isn't chemotherapy, but I've still gotta have it three times a week.

-------------------------------

Long day today

2009-01-07T13:10:00.000Z

Just got in to hospital, today is Ambisone, Asparaginase and the IT Chemo. So I'll have to lay down for a couple hours after that as well, gonna be a long day... and I missed the sandwich trolley... damn!

Felt pretty good so far today, nothing really to report to the Doctor I think, might mention getting another ENT appointment just to check up on how that biopsy they took from inside my nose is healing up just to make sure. Slept alright last night, from about 10:30 til 6:30 so a good amount really, definitely going to take all my steroids straight away in the morning rather than spreading them out through the day.

So not a lot to report, the day area here at the hospital is jam rammed, busy day. In fact they've been having a hard time getting people seats its that busy, I guess they never know how many friends/family people will bring them and to be fair to them they haven't asked anyone to give up a seat at all. I got the nurses on the ward a card and some chocolates today, haven't given it to them yet, waiting for one of the ones I actually know to walk by!

There's a few lifestyle things I really need to talk to the nurse about actually as well, I think my Mum and Dad should really sit down with her as well and ask all the things they want to know, otherwise they're just going to worry all the time. End of the day avoiding public places when its busy and crowded is fair enough, but when your going to a hospital full of sick people 3 times a week anyway... there's got to be a trade off between well-being and safety, I can't stay wrapped up indoors all the time.

-----

I was in the hospital for seven hours in the end, so quite a long day, the intrathecal went fine and the intramuscular's were fine really as well. It's 5:27am... so I didn't sleep all that well, but I feel fine really and I can always sleep more later on. I'm pretty suprised, still I'll take it easy today, I've got to go in to University to sort out referring modules but other than that I've got nothing planned.

I still really need to talk to the specialist nurse about lifestyle stuff, the more I think about it the more I realise there's so much I just don't know if I'm allowed to do any more... but then part of me thinks, like I said before, since I'm spending a good 15 hours a week in hospital surrounded by sick people surely... I don't know, we'll see.

My heads pretty cold

2009-01-05T04:09:00.000Z

It's been a fairly quiet few days I got out of the hospital friday morning and I'm not due back until 9am this morning. It is now 4:26am and I've been awake since about 2:30am... definitely starting to notice these steroids keeping me awake. I went to bed at about half eight so I'm getting about 5-6 hours sleep, which isn't too bad, least I can sleep during the day hopefully.

Today I'm due some chemo (not sure what exactly but it's not IT) and ambisone so I'll probably be in for a fair while, still it shouldn't be too bad.

Got my head shaved yesterday! Looks better than I thought it would, but chances are I'll still be wearing a hat most of the time anyway... it's pretty bloody cold out.

I've had a pretty good weekend all in all, felt alright, few mild headaches and my fingertips are feeling a bit numb but not bad. I've noticed the steroids really keeping me awake a lot more, soon as I'm up there's not much chance of me getting back to sleep, even if it's 2:30 in the morning, plus being tired doesn't help how irritible they make you.

---

Just got back from the hospital, feeling alright, all the treatment was done and that last IT came back clear but they still want me to have the one on wednesday just to make sure. They mentioned finding some red cells in the results which sometimes can mask leukaemic cells so they want to get one more 100% negative result before they make the decision to drop the weekly intrathecal's.

Managed to get a few hours sleep so I'm feeling a bit fresher now, looks like Charlotte and I are going to cook another curry as well.

I've got to be honest I'm feeling really, really irritable having hardly had any sleep. I was getting really angry with my parents over nothing yesterday and this morning. It's terrible to know all the really shit parts of your personality that you can normally hide behind self-restraint just get completely exposed when your on these drugs... and so tired.

Heard back from my tutor today... honestly, if you've got nothing constructive to say... She's new to the university so naturally doesn't know the system but she's not sure "how much leeway they will give me". I haven't paid that university thousands of pounds and spent the last 3 years there slaving away just so they can give me no kind of leeway when things go bad... I've got a student advisor appointment on Thursday so hopefully I can get it all sorted then, I'm just researching what support they give to disabled students or girls that get pregnant. Not a lot of details here to be honest it looks like it's a pretty case-by-case basis.

Ideally I could put back my 3rd Year Project deadlines to the summer and that would take the heat off everything and I fail to see why that would be an issue. Every project is totally different, having a different deadline for it is irrelevant, it's not like it's an exam I'm going to know the answers to, it just means I have time to actually do it. I've sent off another e-mail to the module leader anyway, we'll see what he says.

Happy new year :)

2009-01-01T08:04:00.000Z

I was in the hospital until just after 6 in the end yesterday, the intrathecal wasn't too bad, went a lot better than the last one. So it was just that and the ambisone, my platelet counts and my clotting were really good (over 190) and hopefully that lumbar puncture will come back negative so I don't have to have them once a week. They said I was responding as well as I possibly could be to the treatment so far, which is good, though they didn't manage to get through to the private hospital where I had that biopsy done (to be fair it was new years eve). I'm really hoping that the headaches I'm getting are being made a lot worse by this blockage their on about, so once they sort it out I'll be okay.

Last night was good, cooked an absolutely blinding curry from my curry book, it was luuuush. Though truth be told it went pretty much straight through me after that chemo :P still, it was a job bloody well done. Set off a big old box of fireworks as well! Something I'm sure my neighbours didn't appreciate, but nevermind. Then my girlfriend and I just watched Jool's Holland's show... christ Lenny Henry and Al Murry had to be the two most embarassing old farts on TV last night, actually felt sorry for Dawn French sitting at home watching her husband act like a proper twat on national television.

I'm headed to my parents house today, pick up some stuff and get my car back, be good to spend some time their for a bit, though I've got to be in hosptial at 10am tomorrow so I'll have to come back this evening anyway. Least I can get my PC, got plenty of games I haven't played yet, should pass some time.

So the headaches have been pretty constant, I might see if they can give me something on-top of the paracetmol, plus I've been feeling a pretty sick and yeah had diarrhoea since last night... feeling alright now but not great, still no temperature or anything so it's probably just a side effect from yesterday's chemo.

-------

Back in hospital! Looks like I might have a virus of some sort, though my stomach's been alright since this morning I've felt a bit sick and my headaches have been really bad, but then they said the intrathecal wouldn't help that. Feeling alright at the minute, my mum and dad are on there way here, shame I didn't get to go back and get my car and that but I can always get it at the weekend. Feeling okay at the minute, had painkillers and anti-sickness so I'm alright, not much of an appetite but okay.

I'm starting to realise that the treatments and the hospital visits aren't going to be the tough part of this whole thing, luckily my mum is as tough-as-nails and I've got some of that in me when it comes to medicines and treatment. The parts of this I've found hard have been getting home, everything suddenly feels very... very... real. In hospital it's like an episode of Scrubs or something, kinda surreal so you can abstract yourself from it all but when you get home and all your care is in your own hands and the people around you, the pressure builds up.

I'm pretty lazy at the best of times, so with these kinda symptoms, motivating myself to do uni work is going to be no fun at all... I've still got that essay to be getting on with, which truth be told I should be doing right now. Having said that, I know I'm going to do it, there is no fucking way I'm failing this year, okay it might cost me a first grade but I'm going to be graduating this course with the rest of my mates. Once I meet up with the student advisors as well and get some extra time for that project that'l take the pressure off, the rest of the work is pretty well structured really and with the odd 10-day extension I think it'l be fine.

That was a pointless little rant, anyway, looks like they're going to get me some blood in a minute so chances are that'l pep me up a fair bit once my red cell count goes up, I'm feeling okay now really, not sure whether to push to go home or not. The nurse in charge of me is the bossiest of the lot so chances are I won't have much of a say anyway... besides it's jacket potatoe and beans for supper... :)

----

Mum and Dad have just been, smuggled me in a bit of pizza as well seeing as they're always pretty stingey with supper portions... they popped down to my place in Fishponds as well to deposit a load of ready cooked meals so that'l save me cooking for a little while! Feeling much better now, having my first bag of red blood, gonna have a second later on, had some anti-sickness and paracetemol feeling a LOT better. Looks like I was just a little be anemic and that was aggrevating my headaches, plus with the intrathecal... anyway, I can stay here the night, get the ambisone done ASAP and then have the whole weekend of hospital free time.

Fatigue

2008-12-31T12:06:00.000Z

Yesterday turned out to be a bit tougher than I thought it'd be, any of my friends'l tell you when I get real tired I'm pretty terrible to be around and having not slept for ages and having a cracking headache all day I really was feeling bad. I should have tried harder to get some sleep but for some reason I just sat around watching TV and trying to read this information they'd given me on these ALL clinical trials. The lunch I cooked didn't help, followed the recipe and it wasn't bad but truth be told I ate waaaaay too much, even though I was full I kept eating and that made me feel reaaaally sick, infact I haven't eaten a full meal since yesterday lunch time it was that epic. Hopefully I'll feel alright later on tonight though, my girlfriend and I are going to cook an awesome curry and set off some fireworks, watch some Gavin & Stacey probably as well :)

It can be pretty tough to hear about everybody elses new years plans, especially when I think that I've been getting so tired recently there's a chance I might fall asleep before midnight anyway! Still I look forward to hearing all the stories from other peoples nights and checking the photo's obviously.

So yeah, last night was tough really and I got pretty upset but I to be honest it was 99% just because I was tired really, stuff tends to feel like its piling up when your that tired, I feel pretty good now. Just been down and bought myself a fuck off crate of fireworks! Looking forward to setting those bad boys off later on tonight, and I'm gonna start going through my curry cookbook and see if I can't find us the perfect curry for the evening.

I'm not due in the hospital until 1:30 so I've got a little while yet, looks like I'm due another intrathecal and some ambisone so I'll probably be there til around 4-5pm I'd have thought. Have to make sure they get to the bottom of this phantom nose biopsy I apparently had done as well... thanks private health care...

Back home at last

2008-12-30T12:56:00.000Z

They discharged me yesterday! Great news, it's good to be back home, though its a big shock to the system having to do all the pills and stuff yourself, still on the steroids and some others to protect me from some of the chemo side-effects. But it is very good to be home.

Didn't have to go in for chemo today either, but I did have to do to the ENT department to get my hearing checked out, been feeling a lot of pressure in my ears. Had the hearing test though and it was fine, well within normal sort of limits so at least its nice to know that all these gigs and that haven't damaged my hearing yet :P Yeah so then they put this camera up my nose... again... gotta love it when they do that... and it looks like that private hospital did a biopsy from the inside of my nose and theres a lot of old blood clotted up there blocking up one of my passages, so that would explain it. The doctor at ENT couldn't be sure though since he didn't have my notes from that private hospital... honestly I just don't see the point in private health care so far... okay fair enough when it gets serious hand it over to the NHS but at least communicate everything you've done properly. So tomorrow I'll get them to phone the private hospital I had the biopsy done and double check EXACTLY what was done and then we can sort it out, still I'm pretty relieved my hearing's not damaged or anything.

Had a few messages from some more of my mates about it all today as well, last few people I hadn't told really, pretty sure everybody who I really want to know knows about it now so thats good. Just really want to get it to a stage where its out in the open and nobody thinks they're going to upset me by talking about it really.

So yeah more chemo tomorrow, not sure how long I'm going to be for, I'll be in the day ward so hopefully they'll be people around to chat to and that but I'll have my laptop with me anyway, really gotta start getting on with work.

I'm not sleeping that well yet, my sleeping patterns are all out of whack. I woke up at about 1am this morning and only managed to get another couple of hours sleep between then and 7am. I was hoping to get some sleep during the day after my appointment at the hospital, I did nod off for a bit but people keep phoning me up asking how I am :P still just means I'll be very tired tonight anyway.

Side effects wise I'm okay so far, I really need to take to them more about when I can start to expect them to kick in more heavily, I've noticed that there are some increasing numbers on my appointment card so I assume the treatments gets heavier as they go through, but that is a total guess. Hopefully most of it will be treatable anyway, I've noticed a bit of indegestian late at night, still getting the odd headache but they're pretty mild and I think once this blockage in my nose is sorted out that should help a lot to.

Another thing, I think I said already, I really need to talk to my consultant about is bone marrow transplants, I've been getting different information about how likely that is to be part of my overall treatment and I think it's something I should definitely be aware of as early as possible... especially since finding a donor might be hard because of the Czech blood in me. Plus I'd like to get a better outline of the treatment stages after the induction stage.

But yeah, all's going well :)

All quiet really

2008-12-29T08:59:00.000Z

It's been pretty quiet since Christmas really, they only do chemo and that in office hours by the sounds of it so I haven't had anything done at all. The odd anti-fungal drip and bag of blood but really it's been very quiet. I'm feeling really good, getting tired a lot but that's probably more from just not actually doing a hell of a lot, just laying around in bed, plus I keep waking up at just after 5AM, wide awake and starving hungry... damn steroids.

But yeah my friends and my family have all been in and that, was good to see everybody. Result-wise everything's been pretty good, in fact they even let me go home and sleep in my own bed last night which felt pretty weird but it was definitely good to get out of the Hospital, though obviously I was straight back in this morning. Still, hopefully if everything is fine today they'll let me sleep at home again. I'm going down for a chest scan in about 15 minutes and then I can get straight on the drips I need so hopefully I should be back home this afternoon! Best not to get my hopes up though probably.... besides I just ordered lunch :)

The scan all went fine, the radiographer said there was nothing on there to worry about though he didn't mention the mass of lumps near my heart that did pop up on the CT Scan. But that was due to the fact a the heart scan was literally just of the heart, nothing around it, it can't penetrate air so theres no chance of you seeing anything through the lungs. I'm having my vincristine and daunorubicin drips at the minute and hopefully after the they are done and the consultant's seen me again I should get to be properly discharged! I've got all my appointments booked for the next two weeks, I don't have any more chemo until wednesday so it's going to feel weird not coming in to the hospital tomorrow. Though having said that I think I've got that appointment with the guy from ENT about the fluid in my ears tomorrow so I may be dropping in.

I've got a lot of information I think I need to start writing up really about drugs and treatments as well as the lifestyle stuff they've been through with me. To be honest it's all fairly straight forward, common sense stuff... though I am still gutted I won't be eating out or from takeaways for a long old time... but still they did say I could drink a little bit... definitely going to be ringing in the New Year with a bloody mary...

Merry Christmas!

2008-12-26T17:14:00.000Z

So it's coming to the end of Boxing Day, been my first Christmas in Hospital and it's been alright. My sisters, my parents and my girlfriend were all here Christmas day. Yeah it was nice, naturally being ill I got spoilt rotten, got myself a brand new digital camera, clothes, DVDs, books, parents gave me some money to buy myself some dumbbell's and weights etc... start working off some of this excess food I crave from all these steroids!

Treatment-wise it's been very quiet, I've been taking my steroids and my red cell count was a bit low yesterday so they had me on a couple of bags of red blood. Other than that I've no more chemo until... Monday I think, which is probably another intrathecal, not particularly looking forward to that but still should be alright, it wasn't all that painful.

I did get a few results from the Doctor, apparently after the last intrathecal my spinal/brain fluid is looking clear from the leukaemic cells, so yeah I should be going back down to the standard number of intrathecal's rather than the weekly ones. However they don't like to do that based on just one result so it depends on the result of the next one, so here's hoping! Everything else is looking promising, there is a bit of a quirk in my liver function apparently so they've stopped one of my drugs for now, but I'm not on any drips any more, just been using my Line for blood samples and the odd bag of blood, so yeah, all going well.

I've been talking to some of the people on the Macmillan website, that plus the bit of a scare I had with the reaction to those platelets has shaken me up a little bit. I think, like I said before, I was starting to slide in to this place where I could just think that hopefully this would all be easy, just a few drugs and careful eating for a couple of years and I'll be fine, but there's definitely a lot of complications to face up to. Still, the chemo effects people in different ways, it mainly sickness and vomitting from what I can tell so it could be fairly dibilitating. That mixed with the massive appetite the steroids give me could be a very odd combination.

Christmas night I was getting pretty tired and feeling a bit sad after all my family and that left, glad my girlfriend was there though, that really cheered me up. I didn't make too much out of it because to be honest I can get pretty down when I'm tired so it's not worth thinking about too much, but it was definitely a bit of a downer to be in hospital away from all your family around christmas time. Still all the doctors and nursing staff were great, couldn't believe it when I woke up Christmas morning to find a bag of presents from the Hospital! Fair play to the BRI.

Started telling a lot more of my mates, letting everybody know about it all, mixed bag of responses, can be pretty hard to talk to some people about it but hopefully it'l all get round soon. It's the sort of thing I'd definitely want my mates to feel comfortable to take the piss out of a little bit, I know it's serious... but I'm very much of the opinion that if you can't laugh about it then what the hell can you do.

A few minor complications..

2008-12-24T19:49:00.000Z

All of yesterday and the majority of today was pretty relaxing, had friends and family come to visit, a few drips, injections and blood tests but nothing really major.

Today however they wanted to get my chest echo, my intramuscular injection and another intrathecal injection done.

My programme does outline only three intrathecal's (that's the ones straight in to the fluid that surrounds the spine and the brain) but seeing as that fluid came back positive for leukaemia before now, I'm going to be having them weekly until its clear again. I didn't mind this initially, seeing as the original intrathecal didn't really hurt, but today was a bit of an ordeal.

Again I was a few platelets short so I had to have another tranfusion and seeing as I'd had them all before I wasn't concerned at all. So this Paediatrician came in to talk to me about the study that I'd joined, so that my case can be profiled against other similar cases and my care can be better tailored to my progress and I can try and get through it with as few side-effects as possible. I was trying to concentrate on what she was saying but I started itching... a lot... everywhere...and I mean, EVERYWHERE. To start with it was just annoying but I soon got pretty concerned when the rash broke up all over my face and my chest started to feel tight.

I called the nurse they did a test on my heart, which was fine, put me on some oxygen and saline and gave me hydrocortisone and piriton.

I was shaking and finding it a little hard to breathe... to be honest it was a pretty big reminder that this treatment isn't just going to be a lot of little injections and lying around in bed waiting for things to work, some of this stuff's going to be bad. Having said that though, they said the reaction to the platelets is fairly common (infact a haemotologist even came in to explain it to me), they don't match platelets to your blood type since apparently it makes no difference. They think the bad reaction is just something to do with different proteins and that. Still it shouldn't happen again, I'll be given the hydrocortisone and piriton before each platelet transfusion from now on so should be fine.

But yeah, after that I had the intrathecal injection... I said I wasn't worried seeing as the last one was fine. This one.. was.. painful. Sorry if anybody is about to have one, but this time the Doctor had a real hard time getting the needle where it needed to go, I got some shooting pains down my right leg, one of them made me shout out but thinking about it probably wasn't any worse than being kicked. It's just a very different kind of pain when it's inside you!

Still it made me sleepy and after a bit of a nap I'm feeling fine enough to blog it all...

Starting Chemo

2008-12-22T19:59:00.000Z

After an alright night's sleep (still getting woken up for blood pressure tests and drip changes) I headed off to the fertility clinic again and seeing as I felt a hell of a lot better this time everything went alright. This was a big weight off my mind.

As soon as I got back they got me down to surgery to get my line put in. Seeing as I was just 2 platelets short of the recommended amount I had to have some more of them as well so my blood clotting would be fine.

The Line itself means that all the blood tests can be taken straight out of that, without having to worry about stabbing me with a needle and the drip chemicals can all go down it as well as any of the chemotherapy drugs.

I was given another local anaesthetic in my chest and some mild sedation so I was kind of awake but the whole thing was pretty relaxing, there was only a bit of sharp pain. Though at the minute, seeing as I'm pretty skinny, my chest is fairly bruised, but that should all calm down in the next few days.

So I also started the first chemo drugs, nothing really to report, I've got a bit of a mild headache but that's really started to go now. I had a quick chat with my main Doctor but really there isn't a hell of a lot to report, I'm responding well to the treatment so far, I'm going to need a scan of my chest to get done that's one of the next things.

But really today wasn't all that busy, managed to get a bit of sleep after my Line was put in and yeah, everything's gone alright. I'm not going to be getting out Christmas Day but I don't mind that so much, my girlfriend and my family are going to be here so I'm pretty happy with this, though I am looking forward to becoming an outpatient eventually, hopefully it will be sometime next week.

Fertility and Chemo

2008-12-21T16:23:00.000Z

So I'd been told that Friday morning I'd be off to a fertility clinic since chemotherapy (what would soon be my primary source of treatment) had a pretty bad effect on your fertility it was probably a good idea head down there and make a deposit.

Needless to say I'd never been to a fertility clinic before... after going through some forms and general admin stuff with the staff there I was lead to one of the 'sample' rooms... now I'll be the first to admit that I was feeling pretty rough, my neck was still aching a lot, I couldn't breathe through my nose still and I was just generally feeling pretty crap. But still, I found it pretty hard to believe anybody in good health could actually feel comfortable in this tiny room with a sofa with a paper sheet on it, a tv with a headset and the less said about the lads mags and crap that was provided the better. After an hour there it was obvious it was going nowhere so we decided to head back to the hospital, I was pretty gutted and luckily my Doctor decided it would be safe to postpone some of the treatment so I could head down there again monday and give it another try when I was feeling better.

The rest of friday was really just more tests and a cluster of information. I had a CT scan (pretty straight forward, kinda similar to the MRI but it only took about 2 minutes) and a lumbar puncture. The lumbar puncture was sort of like the bone marrow test, again they use a general anaesthetic and use a really thin needle to get between the vertebrae in your lower back to get out some of the fluid in there for tests and put in a chemical that hopefully stops the leukaemia spreading there, or helps reduce it if it is there already.

One of the big concerns was about my kidneys, and I should probably try and take a second to talk about what ALL actually instead of just banging on.

This took me... a lot of research... infact to be honest to start with a I had to spell check the word Leukemia a fair few times, that's how little I knew about it. I'll just give an basic sort of outline of it.

Right Leukemia is basically blood cancer and since there's obviously so many different elements to the blood (thank you GCSE biology) different Leukemia's can affect it in different ways. So there's three basic types of blood cells: white cells, red cells and platelets. White cells fight infections, red cells carry oxygen and platelets are used to clot the blood. Acute Lymphoblastic Leukemia produces tons of immature, malignant white blood cells that don't fight infections properly, these cells (if left unchecked) will crowd out all the others that's how the damage is done.

So like I said one of the big concerns was my kidney's, when these white blood cells die they leave behind a naturally occuring chemical called uric acid. While this is naturally occuring, in large quantities you can really be at risk of screwing up your kidney's, so I was put on this enzyme called Rasburicase which helps get rid of the excess acid and let the kindney's function normally. So they had to watch my intake and output of fluid's pretty carefully, but so far that's looking pretty promising.

Another drug I've been put on and I'm told I'll be on it throughout the first stage of my treatment are steroids (Dexamethasone) which have a few side effects but nothing really to worry about (weight gain, mood swings). My parents and I did wonder if there was any chance that just the steroids might be enough to an impact without the more intensive chemotherapy but obviously the answer to that was no.

Friday, saturday, sunday really hasn't meant much else in the way of treatment, it's just been a lot of tests, a lot of intrevenous antiobiotics and other chemicals. The good news is my kidney's are responding really well to the treatment and they're working very well, it seems like while the Leukemia cells are all over the place they haven't really had a chance to settle in and effect any of my organs much at all.

Still my main consultant will be back tomorrow so I'll be getting a lot more details and information tomorrow no doubt, plus it promises to be a pretty busy day with tests and that so hopefully I might even have a pretty good idea when I leave the hospital by the end of tomorrow, but we'll see.

For a more in-depth look at the disease and the drugs this PDF is pretty helpful:

http://www.lrf.org.uk/media/images/CALL_7047.pdf

First things first..

2008-12-20T16:35:00.000Z

Hi my name's Will Masek, I'm a 21-year-old student living and studying in Bristol. I'm half-way through my final year at West of England University studying Games Technology. The purpose of this blog is really for me get my head around the diagnosis I've been given, keep a bit of a record of exactly what's happened and really just try and bust a lot of the medical jargon that gets thrown at me. I'm hoping maybe this'l be helpful to some of my friends and family who want to know what's going on and maybe even in the future anybody else who suffers from ALL.

For the last 7 weeks or so I've noticed lumps all over my head and a couple on my neck as well, as well as having attacks of pain and numbness in certain regions of my face. Needless to say I thought this was pretty weird so I didn't hesitate to sign up for a GP here in Bristol and go and see them, they were pretty confused. First thing they did was put me on some antibiotics for a week and take several blood tests.

A week later none of the symptoms had subsided, the blood tests had come back to say that I had a slightly raised white blood cell count but apart from that nothing to worry about. Relieved but still confused I was referred to a specialist at a Hospital in Bristol for later on in the next week.

That weekend I happened to go back to my parents house just to visit and I had another attack of numbness and pain so my parents took me in to the hospital there, this lead to another physical examination looking for swollen glands, some inconclusive blood tests and another weeks course of antibiotics. I also saw my GP back home, he was the only one fairly convinced that the lumps were serbaceous cysts and may need surgical removal, still I had my appointment with the specialist to come so I was hoping he could shed more light on it.

Seeing the specialist was also fairly inconclusive so he decided to get me booked in for an MRI scan in order to try and shed more light on the matter. An MRI scan is pretty straight forward, it just means lying still while a MASSIVE magnet goes round you collecting images of your body making some of the weirdest sounds you've ever heard. So a week later I was at the hospital lying inside the MRI machine for the best part of an hour and hoping something would show up on that... unfortunatly the only actual feedback it gave me was that I had water behind my right ear drum, which would explain why my hearings been pretty crap in that ear. But STILL nothing really concrete about my symptoms.

My specialist decided to refer to a surgeon who would perform a biopsy. A biopsy's basically just cutting a bit off and then running tests on it to find what it is. So I was admitted to this day surgery and they decided to cut off the larger lump on my neck and a small one off the top of my head. I was put under a general anaesthetic (so totally knocked out, not a bad thing) and they did the deed. They also put a camera down my throat which is still a bit of a mystery to me to be honest, but afterwards it did cause me to cough up a lot of blood clots. Anyway the procedure was fine, they patched me up and although I was still coughing up a bit of blood and my nose was still bleeding a bit, I went home.

It wasn't until later that evening that my neck really started to ache and I noticed that the bleeding still hadn't really stopped. I tried to get some sleep but by 6AM my girlfriend and I decided that it was time to head to Frenchay Hospital. At this point things get a little hazy because I was pretty tired. I wasn't at the hospital long before I was on a bed waiting to be seen by a Doctor, they took a blood sample and redressed the wound on my neck (the one on my head was fine) and wiped away a lot of the blood. They then transferred me to Southmead Hospital ENT department by ambulance since I was still feeling pretty rough.

At Southmead a Surgeon saw me straight away and changed my dressing again to check the wound, make a few other little checks and cleared some of the blood from nose. The Surgeon got a second opinion to decided whether or not to drain the wound as it was really swollen, but he decided this wasn't necessary but he told me that the hospital's Haemotologist had found some abnormalaties in my blood so she wanted to have a word with me.

This was a conversation I'm not likely to forget. She was a really nice Doctor and basically explained that from the abnormalities in my blood it was looking pretty likely that it could be a form of Leukaemia. She asked me about a few other possible symptoms like rashes, night sweats, fatigue, lumps on the glands in my armpits and groin and it was then we realised that I had pretty much all of those symptoms. This was more than a bit of a shock but to be honest part of me almost dismissed it, in an assumption that.. well... it could never happen to me.

So with this I had another dressing put on, this time a pressure dressing to try and stop the bleeding, though it was pretty restrictive on my neck, and was bundled in to another ambulance and taken to the BRI. Having been given a room, my girlfriend and I really were just waiting.

Being so tired I went to get some sleep and my girlfriend went back to my house to get some stuff that I'd need for my stay. It was during this time a group of Doctor's came in to see me and gave me a more in-depth diagnosis from the blood tests that I'd been having. So I was diagnosed with T-ALL. Acute Lymphoblastic Leukemia of the T cells... hard to say how I felt really... I should have taken it more onboard when it was first mentioned in all honesty, I was pretty crushed. First thing I thought really was I just didn't know how I was going to tell anybody, least of all my parents.

In the end after a lot of talking and a lot of balling my eyes out my Doctor phoned my parents and let them know and they headed for the Hospital. It was so much information to take in and I was so tired after racing around all the different hospitals, there wasn't a lot I could say or do. My neck was still very swollen and painful, I couldn't breathe through my nose or stop it from bleeding and the shock of it was still settling on me really. I managed to phone my best mate and have a chat to him about it, that cheered me up a bit.

That night, I had a load more blood tests and some bone marrow tests. To get the bone marrow they had to put some general anaesthetic in to my pelvis and then put a pretty big needle in to to extract it. They say its pretty much the worst test of the lot, to be honest I couldn't feel the needle going in but you can definitetly feel the bone marrow getting sucked out and you can definitely feel them remove the needle at the end of the procedure. Still, it wasn't THAT bad, to be honest I'd been expecting a lot worse.

The rest of the night was really just made up of me thinking about how I was going to change my lifestyle entirely. When something like this lands on you it suddenly has to become your biggest priority and everything else has to be worked around it, it really hits home how big a responsibility it is. The NHS team of doctors and nursing staff that have helped me have been brilliant though, they've answered all my questions and though by this point they'd given me a shit load of information I couldn't really process yet they really helped put my mind at east.

So that was how I got here really, it feels like ages ago now but it was only a couple of days, a lot seems to have happened since then, I'll try and get some more down in another update soon.