Two or three interesting happenings for the day, which is quite a catch really. So I just finish watching ‘Less than Zero’ which is better than I thought it would be, and it’s time for chemotherapy. There’s some drama regarding a block in my Hickmann line, but this soon smoothed out and a ruby sachet is attached to the line and proceeds to fill my vein with its active ingredient. This is the stuff that makes me piss the colour of tea, remember? Anyway I’m letting it go about its business, when I notice a red splash on the floor to my side. At first I panic and think that I’m bleeding, but it soon becomes apparent that the damn chemo shit is leaking out of the drip and onto the floor, instead of through my veins. The panic button summons an orderly who is swiftly despatched to bring help. A nurse arrives, makes an appraisal of the situation then informs me ‘don't worry about the spilt stuff, just stand back, it’s dangerous for it to touch your skin.’ She shuts the line and leaves to get a replacement valve. Her words stay with me though and it strikes me as odd that its dangerous for it to touch my skin, but perfectly okay for it to be pumped directly into my veins. Go figure.

I just went for a walk in the miserable precipitation lingering beyond the miserable incarceration of my hospital room. As I left, the nurses commented on my freshly shaved head, and curiously my manner of dress. When I told them I was going for a walk they told me that I should watch out for security ‘dressed like that’. Apparently wearing a dark coat with a hood, in rainy weather, is what criminals do.

This week has been thought provoking as regards my illness. You see no matter how many injections and IV drips I have, I still find it hard to convince myself that there’s actually anything wrong with me, I suffer no physical ill effects of the treatments, and visitors comment on how well I look, not how sickly. So when Dr Zobolovski (undoubtedly spelt wrong) warns against any kind of human contact the weekend , it’s real hard to take him seriously. Still one has to be responsible and I obey most of the rules they set me (I still eat untoasted bread, AND I had a sip of beer!).

Of course the other major factor of the my hospital tenure is the relentless monotony of which I continually moan. I had to face some home truths this week. For this I thank both the consultant Dr Tringham, and my friend Adi. I have to face up to the fact that I am going to be hear for 6 months, and I’m only three weeks into it so far. I just have to deal with it. I needed the impetus of others to bring me to this realisation. I can’t expect to just be granted compassionate leave whenever I get a little bored. I’m quite proud of myself for coming to this revelation, and I’m actually looking forward to the coming week. I guess the best way to look at the start of the new week, is as being one week closer to the end of my treatment, rather than the beginning of another 5 day stretch. As part of this new mindset I hope to make better use of my time, particularly as regards reading and writing. I know that I can’t begin another week like last week: terminal depression by Tuesday afternoon is not going to aid my recovery.

One piece of crap news - Midland Bank were very kind the other week, promising a compassionate treatment of my account due to my most unfortunate medical condition. They began their compassionate treatment this week by revoking my credit card. Thanks.

At 8am my pager starts beeping and I know then that my Grandfather is dead. The message says ‘call Dad’, but it’s a formality. He passed away at 1.30am, peacefully and dignified. I think we’re all glad that it’s over, and that he’s at peace. My dad is going to spend the day with Grandma, whilst I reflect on things from my room. I haven’t really got much more to say about it.

So big chemo today. I have the ruby red ‘makes your piss look like tea’ stuff, the injection in the arm and of course the lumber puncture awaits in the afternoon. I have to give a massive blood sample from my left arm, which is quite painful afterwards, but the results show an unexpected rise in my platelet count, which is good. The lumber puncture itself is a bit of anti-climax. I’m bracing myself for drills and bonesaws, but not even the anaesthetic injection is of any great consequence. Within ten minutes I have a huge plaster across my lumber region and I’m on my back for 6 hours. It wasn’t as difficult as I thought it would be, but I still managed to soak myself with piss (the colour of tea, of course) whilst attempting to urinate into a cardboard bottle. This is annoying, but I can’t do much about it as I have to stay on my back. I ride it out.

If last week was a revelation for accepting my hospital internment, today was a bit of a wake up call for accepting that I am ill. The sheer quantity of medical treatment today kind of enforced upon me the fact that I do have a serious disease and I am at risk of being in a lot worse condition than at present. I am not surprised to find out that I will not be able to attend my Granddad’s funeral, and I resign myself to not being able to attend Halloween parties and the like. Never mind, one has to be realistic about these things. It’s still odd to say to yourself ‘you have leukaemia, you have cancer’. I wouldn’t say that admitting this plunged me into depression, rather it was like a slap round the face. To reiterate my attitude towards boredom: just deal with it. The nurse has just mentioned to me that I’m borderline anaemic, and I will probably have a blood transfusion in the next couple of days. I told you I was ill.

Shit.

Something not good has happened. I’m in the kitchen making myself a cupasoup, and on the off chance my day to day doctor, an Armenian who goes by the name of Ara pops in. He asks how I am, and then as if he’s discussing the weather just drops a total fucking bombshell. My brothers are not a suitable match for the bone marrow transplant. The rogue cells, which they were testing will in fact render them incompatible. He casually mentions that we now have to find an unrelated donor. I am of course caught a bit off guard about this and his rather casual attitude. Only 2 weeks ago he was saying how good it was that my brothers matched, as finding a non related donor is very difficult. Now he’s all ‘well there’s billions of people in this world.’ My head aches, and for the first time, I think I’m scared.

They’re going to do a bone marrow test next week, which they predict will confirm that I am for the time being leukaemia free. This does not mean I am cured (though there is a slight chance), but rather for the time being I would be a healthy human being. Now the thing is that the cancer can and most probably will return at any time, but being in remission is most definitely good news. It means my treatment works, I can have a week off chemotherapy and the transplant should be easier.

The Day of Reckoning. Dr Hamid is very jovial when he pops in to perform my bone marrow test. His optimism is enthusing and I have no qualms as he goes about preparing sharp metal objects to plunge through my sternum. Luckily he also provides anaesthetic, so it’s not as traumatic as one might fear. It is quite unusual to have a 4 inch long inkwell screwed into the centre of your chest though. To this a syringe is attached and a most unusual sensation occurs as the bone marrow is sucked out of the cartilage. Anyway, Dr Hamid is very excited as he collects the sample. The small white deposits are, he ensures me, a sign that I am well on the way to complete remission, and he hurries them off to the labs for further testing.

Yes I made it into complete remission; that is to say less than 1% of my cells are cancerous. This is pretty cool considering I was at 98% at one stage. My blood counts were also good, so they predicted that I could go ahead with Stage 2 on Monday. The other option was to give me another week off to recover my white blood cells a bit, but yet again I’m responding too well and forcing myself back into treatment. I guess the sooner I start the sooner I finish though. Anyway Dr Tringham informs me that I’ll get to enjoy another lumber puncture on Monday, so that’s something to look forward to.

Well I’ve just spent 6 hours lying on my back, which is not exactly my idea of a fun way to spend an afternoon. On the plus side I mastered the art of pissing prostrate and avoided any kind of urinal spillage, but on the down side I was in a foul mood to begin with and even this little victory could do little to change that. I woke up this morning feeling crap with the aching in my legs having spread to my arms, and presumably henceforth to other extremities. This aside I am frustratingly contemplative this morning, with that old chestnut ‘why me?’ driving me to distraction. It strikes me today that I am missing out on a year in the ‘prime of my life’. Previously my age had not been an issue, I had just seen my treatment as a temporary obstacle to my current plans, plans that will continue uninterrupted as soon as the obstacle is overcome. Today it strikes me that 20 is a particularly unfortunate age to have to endure this inconvenience. Though there is never a good age to develop such a malady, I will be spending my 20th year living the life of a 70 year old. I purchase a copy of The Face today and am reminded that for the next 6 months at least I will not be clubbing, meeting new people, going to gigs, behaving irresponsibly - in short living as any other person my age would be.

I spend the afternoon in my new but not improved hospital room trying to overcome this self pity. Fortunately as much as The Face reminds me what I am missing, it also reminds me of what I have to look forward to, and how much I will appreciate it when I’m healthy. As Dr Hamid applies the lumber tap I resign myself to another 6 hours staring at the ceiling.

For the uninitiated, the above writings are excerpts from my diary of my treatment for Acute Lymphoblastic Leukaemia. If you would like to hear more about my life in hospital then email me at shoes@clara.net