What's left to say?

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

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

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

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...

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

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

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.