Amazing BCR/ABL results

I went to my appointment with some trepidation yesterday. Although things have been going well with my treatment, everything I've been told so far is with regards to my Haemotological status and as good as it is to know that my blood counts are normal, it's always at the back of my mind that the old style drugs could achieve the same results. However with the new drugs, the disease should be affected at a molecular level.

Up until yesterday I didn't know how my cytogenetic response was? In short this is the molecular response i.e. is the Imatinib inhibiting the signal and stopping the mutation taking place.

Anyway the short answer is yes the new drug's working and in absolute spades. My BCR/ABL score has gone down from 107% to 8%. Don't ask me to explain what this means, because my consultant told me twice and I still haven't got a clue. However, she said that she would hope for a response like this after 6 months and actually it's occurred in 3. She has however warned that it may not shift at all in the next 3 months and may in fact bobble about a bit and this is just the way individual people respond to the drug.

Ultiimately they want to get me down to a tiny fraction of a percent at which point they can claim molecular remission, so I've got 15 months to wipe out this 8% and I'm going to try bloody hard at it.

So how's the leukaemia?

Well it's alright thanks. I've been living with it for 4 and a half months now and we're rubbing along alright. As I've said all along, it hasn't actually made me ill at all. So in many ways I feel a complete fraud and this is where the problem comes. I rarely think about the disease that I'm riddled with, but unfortunately I am forced to confront it every monring as I take my oral dose of Gleevac. Luckily, I forget to take it at the right time sometimes (normally at the weekends), but I've only missed one daily dose in the 3 months I've been on it. I say luckily, because to me it suggests that the disease isn't on my mind constantly. However, I do feel unsettled by my normal life.

I've recently started seeing a cancer counsellor, who works as part of the Dimbleby foundation and discussed my issue and my getting on with normal life. Oddly - despite my dignosis - 2007 has been the best year I've had for several. Home is settled, work is as stressful as it needs to be to be stimulating, the kids are great and everything I have strived to acheive has started to come together for us as a family over the last 12 months. And here's where my unsettled feeling comes in. Why the fuck haven't I woken up screaming and expected my life to end? Why don't I constantly think about dying? Why do I not look at my children and weep? Am I really as ill as they tell me at the hospital?

I don't know.

Apparently this is a perfectly normal reaction to cancer, some people do fall apart, but then others just say, 'oh alright then' and get on with things. I guess I'm one of the latter, however it does make me feel like a fraud - there's that word again.

My friends have been fantastic and offered endless help, but we haven't actually taken any of them up - because we haven't needed to. Fraud.

My company has said I can take as much time as I need. Apart from my hospital appointments, I've taken none. Fraud.

People ask me how I feel - I feel fine - I am fine. Fraud.

My wife is - on accassion - in bits, I'm holding it together. Fraud.

I'm fitter now than I have been for 10 years. Fraud.

I've actioned a critical illness claim which is likely to get paid out. Fraud.

I'm 4 stone lighter than I was 18 months ago and I worked bloody hard to get that weight off, but a little voice says, 'yeah but the Leukaemia must have helped'. Fraud.

Physically I'm fine, mentally things are quite difficult. The difficulty is the uncertainty. The Gleevac data suggest that I may be in remission in 12 months and continue to be so in 5 years time. My consultant tells me that they have no reason to believe that this shouldn't continue ad infinitum. So I therefore become the equivlent of a diabetic who takes insulin every day - constantly medicated but fine.

But no one can tell me that that is going to happen. My life is literally uncertain.

Cunt. It's what it deserves. Pernicious, parasitic cunt. You know what maybe it isn't alright.

Things I learnt at the weekend

Never give an 18 month old - with a penchant for throwing food - a bowl of blackberry and apple crumble.

Things to do in the airport when you're bored

Right so here I am it's 7.30ish and my flight to Edinburgh has been delayed by 4 hours. I'm currently an hour and half into my delay and I'm quickly running out of things to do.

I've read:

- The Times
- The Telegraph
- Half of Private Eye

But for some reason I just can't get into reading when I'm in this kind of halfway purgatory. Now time was that I'd go to the Oyster bar and get pissed on champagne but a) the fucking oyster bar's gone and b) I can't drink on these bloody pills becuase they make me feel like shit (That's a whole other post)

So here I am sitting in a departure lounge that's emptying around me gradually, trying to play beat the clock on the pay for internet. (I'm not paying more than £2 for this). I now know how Span must feel in his far flung lounges tapping away. Yes I know you don't do that Span, it's just i'm trying to mthink of things.

Right off to Facebook now.

Aaaarrrrrghhhh!! I'm trapped in internet hell.

The evil of Facebook

I've just spent 3 hours on there. Ahhhhhhhh!! I love and hate the internet so much.Click if you dare.

Is anyone having problems loading the blog...

...or is it just Span and his shonky South American dial up connections.

Blimey

Louis top, Eben bottom.

Well I promised photos so here goes - First of errr some scroll for more

Heeeeeerre's Louis. Thing is with Lou is if you put him in pink he'd easily pass as a girl

Ebs

Oh and Joan his preschool leader, the most wonderful woman you'll ever meet.

The Grandparents

That's Nic's mum (Nana) with Anthony Gormley and my Step-Mother (Granny) at Eben's graduation.