Chapter 23 - The Waiting Game

Two things I have learnt since this whole business started: firstly that nothing goes according to plan and secondly don't make any. Plans, that is.

A favourite walk around Petersfield Heath lake

It is now three weeks since Christmas Eve and the start of my four day exeat. Since then I have been readmitted to hospital only once, spent two nights on the ward, had the first (antibody) part of my final round of chemo and been sent home again because of low platelet count (20-30). I have been back to the hospital twice since then, each time as an outpatient, and had my bloods taken three or four times but still the platelets fail to grow in number. For more info on low platelets, have a look at this on the internet.

There are obviously enough to stop me from bruising, bleeding and so on but at the latest count there were 24 (don't forget I started off with over 450) which is really only a quarter of the amount required to restart the chemo. The consequence of administering more chemo with a platelet count this low could be fatal: chemo knocks out the platelets (as well as the red and white blood cells) and if they were to give me the last round now I would, in all likelihood, end up with no immune system whatsoever - permanently - leading to a catastrophic bleed or infection and probably death. So it's a no-brainer really, as far as that is concerned.

Can anything be done?
Not really, except wait for the body to recover. The bone marrow biopsy I had taken before Christmas showed that the bone marrow is producing blood cells - but very slowly. That's good news - it means the bone marrow is working and is likely to recover, albeit slowly, over the coming days/weeks.

So why the delay in recovery? Well, a quick look at my platelets graph which sadly I cannot show you here, says it all - I started with 450+ before the first treatment, which dropped to single figures after the first treatment and recovered, but to nowhere near the original count before the second treatment blasted it again and this was when I experienced that awful chronic nosebleed. Again, the count recovered but only to about 80-100 before being hit yet again almost straightaway. This time the recovery has been, understandably, reluctant and very slow. The other reason is that I am not a young man anymore.

My general level of health is, however, good - since being at home I have been walking every day - sometimes approaching three miles. I have been eating well (I'm now back up to 77kg, a full 6kg heavier than after my last round of treatment) and sleeping comfortably and getting a full eight hours. My deafness is still with me but at least I can hear in one ear.

My stamina is ok but I get a bit puffed going uphill - not surprising as my red blood count is only in the 80s rather than the 120s so I am only getting two thirds of the oxygen I should be getting - but again this will gradually increase.

A look on Google tells you that as well as exercise and sleep, you should avoid alcohol and caffeine, eat plenty of fresh veg and fruit, eat oily fish and Omega3-rich foods and get plenty of Vitamin C. My medical team didn't exactly poo-poo this but their opinion is that, whilst these rules are commendable, following them to the letter will not automatically encourage platelet recovery - this will happen when it's ready and in its own good time.

So what's the cunning plan?
More home time and slow recovery - during which I am getting stronger - more bloods and review in a week's time and wait patiently.

I have to say that, as the treatment is in four parts, when I was told that there is a strong chance that they may give me a reduced dose of the final one - or even not give it at all - this filled me with paranoid dread that the Lymphoma would automatically come back. I would not only be back to square one but back in the box - since chemo would be out of the question, it would appear as though I would be between a rock an hard place.

I find it difficult to keep up but I'm getting there!

But I am assured that (notwithstanding the fact that no-one will guarantee it) the three very intensive treatments I have already had will have already done the job they were meant to do, i.e. kill off the cancer. The final one is a sort of 'belt and braces' job to make sure there is nothing left behind.

So on one hand, as I slowly recover from what I've already had and start to shave again (it's been over seven weeks since a razor touched my chin), my stamina and general health improves and I start to enjoy 'normality' I'm not too upset by the thought of not having to go through the last treatment - which is the hallucinatory one too - but on the other hand I really want to make sure I properly cured before I resume normal life. Burkitt's is, after all, the fastest growing cancer around and you don't get a lot of warning.

The motto continues to be: take each day as it comes. So that's what I'm doing, and although I can't plan anything - like will I be able to go to the Curtain Call Awards on the 30th? Or go away at half term in mid-Feb? - I am extremely grateful I am playing the waiting game at home in comfort rather than a hospital bed, surrounded by other ill blokes. I am keeping myself busy, avoiding daytime TV at all costs (let's face it, that particular disease is incurable) and trying to be as normal as possible without overdoing it.

It could be a lot worse...