Needles, nudity and necessities

The first week of being a Cancer patient was very odd indeed. A lot of it was spent with assorted doctors prodding me in various states of undress.

A lot of the people coming to visit me were visibly shocked by what was going on, not least because the last time most of them had seen me I was throwing some shapes on the dancefloor in the student union. At one point I was up on Charlie's shoulders while the DJ fired the dry ice machine in our direction. We were the only people on the dancefloor right then.
This was on the night before diagnosis, when I had decided just to go and enjoy myself and not to worry about blood results.

There were so many people coming to visit me that we had to commandeer the relatives room on a few occasions as you can only have a few people round a bed. That was also where I was allowed to and use my mobile phone to keep in touch with everyone at home.

So all the tests and treatments began with the leukopheresis I had on the saturday to harvest the excess white blood cells from my blood. On the monday I had my first ever bone marrow aspirate and trephine. The former of these is where they use a rather large needle to pierce your hip bone and collect a sample of your bone marrow, and the latter is where they chip a piece of your bone off from the same site. It's not a nice process and one which the other patients in my room told me most people ask for sedation before going through it. It's also not nice for the doctor performing it as there's a certain amount of brute force required to get a chip of bone out. I think sedation for this sort of procedure would be beneficial to both the patient and the doctor. The reason for these procedures was to confirm the diagnosis of Chronic Myeloid Leukaemia.

What they are looking for first and foremost is what is known as the Philadelphia Chromosome as it is this abnormality that causes the repetitive cycle of cell division that is CML. It involves the translocation of genetic material, which in turn leads to faulty proteins being formed. It's a mutation and nobody knows what the trigger is.

I spent a lot of time wondering if it were perhaps an environmental trigger as I have spent a lot of time in chemical labs. Of course there is little chance that had any effect as Health & Safety rules regarding the chemicals I had used are very strict. The other thing to wonder was that it really was blind chance that this mutation occurred in me.

No ability to heal faster, manipulate metal, ability to control the weather or telepathic powers for me. No, I was a shit X-Man. My abilities were rubbish.

As soon as the confirmation that I did indeed express the Philadelphia chromosome was confirmed we began to talk about what the treatments available were. There were many, but only two interested me. The first was a bone marrow transplant which was dependent on one of my siblings being a tissue type match with me, and the other was on a clinical trial for a drug called STI-571 (now known as Gleevec). The clinical trial was interesting because it's a drug that, when it works well, simply renders the condition as manageable so that you can just go on with your life as normal. Think of it as being akin to someone dealing with diabetes for instance - they have a condition that needs managed over their life. There is a certain appeal to this but it has something missing that only the former of those choices has, the word cure.

A BMT could cure me so that was the one for me.

So, that decided we then set about getting me well enough to go home. For that we needed to get my white cell count down to a sensible level, which meant a course of hydroxyurea. Before we could start that though I had to address something. The treatments I was about to undertake would almost undoubtedly make me sterile so for their to be any chance of me fathering any offspring I would have to put my best swimmers in storage.

The first time I was to go I made the mistake of telling my friend Hayley, who had done some clothes washing and brought stuff up for me, that this was to happen the next day. In my bag I found she had left a pair of crotchless knockers for a laugh. She's a very odd girl but wee things like that made me giggle the whole week or so I was a patient there. On the morning itself I got text messages from about 20 different people all telling me to have a good one or to think of them when visiting the clinic. It was exactly the sort of thing that needed to happen to let me not take it too seriously.

The fertility clinic is one of the most depressing places I've ever been because nobody wants to make eye contact with anyone else so I must have looked a right idiot casually wandering down in my sandals and shorts and t-shirt. There's an incredibly odd feeling of pride when a nurse tells you that's a very good sample, although deep down you know she probably says that to all the guys.

I had to do this twice as they like to have two different samples from you before they're put in the wank bank for safe keeping. The second time it wasn't that my peers knew where I was going that made it difficult, it was the fact that I had to explain to my mother why I wouldn't be there if they visited at a certain time. I'll be down putting your potential grandchildren under ice was how I described it I think.

When they came down my supervisor Colin had put them up at his place in Caerphilly which was just typical of the man. He is an absolute gentleman and I hope he has some realisation of how much those actions made things easier on the parenting team but for me as well.

X-Ray specs

Have you ever felt like someone sees straight through you?

I got an overpowering feeling of this on sunday when I had old friends from uni over visiting with their kids. Amid the carnage Yvonne simply asked me 'So, how are you really?' and even though it was a simple question it knocked me sideways. I could actually feel tears welling up and everything. Thankfully though her daughter made an attempt for freedom right at this moment and she had to rush after her and I never had to answer.

And here's the thing, I hadn't actually realised that I wasn't quite right. I wasn't aware that it was a false front I had been putting on for everyone. I certainly wasn't expecting anyone to call me on it.

So the reality is that I'm struggling to not be resentful about the fact that my life is on hold again. I've often felt that I got robbed of a decent portion of my twenties and even though it's terribly clichéd to say so I've become sick and tired of being sick and tired. It's not so much a 'why me?' feeling as an 'Oh for fecks sake, not again'. I try very hard to not take my frustrations out on those around me but I'm only human so I know mistakes have been made on that front. For what it's worth my family are tremendous at recognising when I'm not quite right and leave me alone to get through it, which seems to work very well for us all.

I'm aware that sometimes I editorialise what I write down and it comes across that I'm dealing with everything brilliantly, and while that's partly true, it's only right and honest that I detail the ways in which I'm not doing so well. When I get my head around them myself I'll share.

Weighting Around

Every month I go to see the doctors at the Beatson Oncology Centre and they assess my condition in regards to the level by which my errant immune system is attacking my body. The lung damage, as I've mentioned before, is permanent but the manifestations of GvHD on my skin are reversible and so far topical treatments seem to be dealing with that ok. Having said that it has surfaced on my scalp for the first time which is incredibly irritating but I have a lotion to try now to see if that helps.

For the most part it's just my arms that are affected by a rash but my skin is now very sensitive and flares up red with even slight contact and remains that way for a while after.

The other issue that today threw up is that I am still a little short (boom boom) of the weight I need to be before I can be considered for the transplant. I am closer to it but I have an appointment at the end of the month with the respiratory folk (who ignorantly don't answer questions from my other doctors about aspects of my treatment) who control whether I get referred so I want to reach their mark within that time or it may be another three months before I get referred. It's not the end of the world if I don't make it but I am desperately keen to get things moving now. So I have been prescribed a drug that should artificially inflate my weight for as long as it's needed. It's an anti-psychotic drug as it happens but one of its side effects is weight gain so a small dose, which won't have a psychological effect, should be enough to push my weight up a little bit higher and hopefully do it quite quickly.

Any time I mention my weight problems and how difficult I find it to put weight on there's a rush for people to tell me how lucky I am and how I can have some of theirs if I want it. Perhaps funny the first time but it begins to wear slightly at the four thousandth telling. I know they're just trying to lighten the situation but I sometimes think people don't realise that weight issues aren't the sole preserve of those with too much of it.

It's almost like there's a pecking order where the overweight carry more clout than the underweight.

Oh aye and while I'm ranting I can do without hearing that I must rattle when I walk due to the amount of tablets I take as well. I'm not sure that's ever been funny to be honest.

Feel tired after being out at the hospital today - may well fall asleep quite early tonight.

You spin me right round

The morning after diagnosis day was a pretty uncomfortable one. I mentioned that I had a disproportionate number of white blood cells and we had to set about doing something about this. I was on continuous fluids to dilute the blood so it would function better than it had been with all those white cells making it more viscous, but my white blood cell levels were still incredibly high.

The method of choice for reducing them was to take my blood out and separate the white cells in a centrifuge before giving me the blood back. This also has the benefit of being a back up supply of your own white blood cells that can be used for later treatments if necessary.

The discomfort of this procedure was in having to sit with both arms in front of me for three hours and not being able to bend them as I had large bore needles in both.

While I was lying there watching my blood come out and go back in over and over again my PhD supervisor Colin arrived. It's to his credit that he didn't say 'I told you so' as he had been on at me for months to go and see a doctor as he had thought there was something wrong. Of course he didn't imagine anything of this magnitude but he had at least spotted something while I was persistently ignoring it.

By this time all my family had been informed as to where I was and what was going on so I spent quite a healthy portion of my time on the phone to them all. My younger sister Janine was living in Manchester at the time and as soon as she could get off work she hopped in her car and drove down to see me. My parents would come down a few days later.

Speaking to the family was absolutely fine. I think they had each been prepared by the parenting team so it was just a matter of reassuring them.

Even at this early point the protocol was for each of my siblings to get tissue typed to see whether any of them were a match for mine as the option of a bone marrow transplant had to be investigated. Janine got blood taken when she was visiting and the rest of them organised a trip to the centre in Glasgow to get theirs taken.

The next few days involved me doing even more phoning around to speak to people to let them know. Most of these went not too badly and the shock was met with resolve but I made a simple but crucial error on one of them. At the time my mobile phone contract allowed me to make free calls after 7pm so my decision to phone my friend Eileen before that time was immediately seized upon by her answering and defensively asking what was up. Telling her was horrendous because I had left myself with no way of trying to soften the blow and just had to blurt it all out. Eileen and I had gone out when we were 16 and I think I can safely describe her as my first love. I think it hurt her even more because I had been through to see her for the weekend only a few weeks before and had seemed fine so it was really hard for her to take - there was much in the way of tears and snotters. It's undoubtedly an odd situation to find yourself being diagnosed with a horrible disease yet being the one who consoles the people you have to tell. It stems from the fact that you've had time to come to terms with what's going on but they haven't so their response is like an echo of your own response to the news.

While it's essentially easier to have everyone being pragmatic and positive about everything there is also something really affirming about people crying over you. There's a primal honesty about it and it's not something I think should ever be sneered at. If you're someone who can keep a lid on all your emotions then good for you but there are those who either can't or just choose not to keep it all in.

I was to be in hospital at least a week and an awful lot happened in that time. All things considered there was a lot more hilarity than I would have expected in a ward like that. Details to follow......

Wiiiiiiiiiii

So this coming friday the football World Cup starts, and while I am excited about that as I always am when it comes around, there's something else happening on friday that has me even more excited.

It's the first time in probably fifteen years or so that such an event has caused genuine excitement in me.

It's the release of Super Mario Galaxy 2.

Yes, I am perfectly aware that I am a man in my thirties.

I am also aware that the first Mario Galaxy game made me smile more than I think any computer game has ever done and it also made me giggle like a schoolgirl. At a time when I was stuck at home against my will, and still pretty resentful about it, it lightened my spirits dramatically.

I've always been a huge fan of the Mario games across all the generations of nintendo consoles but there's simply no getting away from just how genuinely affected I was by this game. It is a truly tremendous piece of game design which had me racking my brain as well as marvelling at the absolute mayhem of it all. It did worry me slightly that for a little while I was looking at the world through Mario's eyes though. If I saw two buildings quite close together I would think that I could spring off each of the walls in turn to get up to roof level to see what's there.

I'll hold off on the big, bushy moustache though.
I can't promise I won't buy another pair of dungarees though.
Ah, my dungarees. Why did I ever get rid of you?

I am so very much like a child before Christmas and I don't care.

They call us lonely when we're really just alone

Things are very much different now from when I first fell ill a decade ago.

Everyone's reaction to it is different for a start. When people came to visit me back then there was never any doubt that I would be fine and that this was just a bit of a stumbling block to get past. I felt pretty much the same way myself. I was a young man, and faulty blood cells aside, I was in very good shape so the treatments I was to receive weren't all that worrying.

Now all these years later we've all been worn down a bit by it. I'm not as strong as then physically (although I am even more resilient) so there are more health issues to consider for any treatments I have to undertake. I can see in some of my friends that they're a lot more worried now than they ever were back then. As a result of this some of them find it incredibly difficult to come and see me. Now that's not to say that they don't come and visit but there's a notable difference in the regularity with which they do. That's not all down to their fears and their hatred of seeing me in this state but also because they all have grown up lives and the responsibilities that come with that. Back then we were all starting out in our careers and were mostly single and with a lot of spare time on our hands. Now they have their spouses and their children and significantly more in the way of work commitments. This means that I don't get to see them as often as I would like, but I understand only too well how real life can often get in the way of the things you would like to do. With each visit everyone apologises that they've not been around more but I honestly don't mind. It's up to them when they can make it.

Things aren't helped by the fact that my two closest friends who were such a massive part of my visitation schedule back then now rather selfishly live in different countries. I miss them coming round here on friday nights and getting drunk and eating all my sweets.

So all this real life stuff means I have much more time on my own than I have probably ever had in my life. My family are about a lot of the time but even accounting for that I am on my own a lot. I've gotten rather good at keeping myself company so I don't really feel lonely. Not yet anyway.

Every breath I take

It's bad enough under normal circumstances trying to breathe with faulty lungs but over the last few days I've been feeling a bit unwell and have found it even harder to catch a breath.

It doesn't feel like anything terribly serious but it's been enough to completely floor me. Since sunday night I've been awake for the grand total of eight hours. When I'm like this my body seems to totally shut down.

What hasn't helped today is the oxygen concentrator (which I refer to as Darth Vader due to the asthmatic pulsing of breath it makes when working) I have in my room to help me breathe has broken down and I've had to connect myself to the spare cylinder I have for moments like this. The machine made some pretty interesting gurgling noises during the night and I had to turn it off and reset it a few times before finally giving up and getting the spare this morning.

The engineer will be here later to sort it thankfully.

I'm beginning to feel vaguely human again but know that it will be days before I feel close to my normal level. This is just the reality of having a suppressed immune system. I am wide open to any infection that's going and I do get most of them. It is of course quite depressing but you simply have to be pragmatic and just let it run its course. I am annoyed though because I'm meant to be going out at the weekend to see my old friends from university and this might be a spanner in the works. I'll speak to the docs and see what they say about it.

And now I'm away back to sleep for an hour or so.