I've been crying a lot in the last week

Somehow Sigur Ros have completely evaded my record collection until last Friday when Takk their last album arrived on my doorstep.

Music has always been the best thing to get me blubbing, but this album has just taken it to a differnt ridiculous level. To my ears it's the most emotive heart wrenching stuff I've heard since I was a teenager listeneing to throwing Muses. Anyway for the unititiated or for the fans here's my current favourite.

On the other hand

Although Sigur Ros has been making me cry I still can't stop my child like glee when I hear some proper late 90s silly hands in the air trance. I've been burning my entire music collection to MP3 recently and came across this that I hadn't had out for a few years. This is a choon at it's preposterous addled best.

I give you Mauro Picotto's Lizard live in Caracas Venezuala because this was always how it was recieved - pass the glow sticks I'm off to climb some ladders.

A cure?

In November Nic and I went up to the 7th annual Patient and Carer CML conference organised by CML Support. We attended with a mixture of trepidation and with a complete lack of expectation. We had no idea what we'd find and to be honest we feared it would be a big organised hug, full of people 'supporting' each other.

What we hadn't expected was the high level of engagement from the specialists in the area, with all the lead consultants in the area from the UK there and a couple from France and Italy, as well as the 3 main pharmaceutical companies involved in production of the three main drug therapies now used to fight the disease.

Thankfully it was all consultant led and while the drug companies were largely funding it, there was no overt manipulation of agendas. In short the three companies do not technically compete against each other, but rather there is a lead drug and two other different drugs that will combat different strains of the disease's mutations when and if they occur and become resistant to Imatinib (developed by Dr Brian Drucker - or God as CML patients like to call him - at Novartis) which is very much the lead. A little about Imatinib and it's wonder drug status is contained here.

Anyway, the day was frankly exhausting. It was a series of half hour lectures over 10 hours with a cut down 45 minute lunch break and couple of quickly snatched tea breaks. Not that I'm complaining the whole thing was fascinating and everyone found it so, hence the fact that we had to cut down the breaks and also overran on the room booking by 2 hours. They went into extraordinary medical and molecular biological detail and unfortunately most of the real brain twisting stuff came towards the end of the day, but we learnt an amazing amount. Not least that the word 'cure' has begun to be uttered - in very hushed tones let's be careful about this.

Again I'll try and explain this in very simplistic terms.

There is strong evidence after 7 years on the market that Imatinib can ensure that people not only reach full remission but stay there. By that I mean it is undetectable by any test that is available currently. Note any test currently, because they know that they are currently unable to test below a certain level (and therefore cannot say this is a medical cure), however they have so far been perfectly happy to accept this as a zero score.

There is precedent however of people coming off Imatinib for sustained periods when in remission and then staying there. The most common reason for this is in women who wish to become pregnant. A clssic example is Erin Zammett Ruddy an editor of Glamour Magazine in the States who when diagnosed started a column called 'Life with Cancer'. Erin came off Imatinib for a period during 2006/7 while she was trying to get preganant and then for the full term of her pregnancy a period of around 13 months. During that time she did not come out of her state of remission.

This is a story that appears to be increasingly common amongst patients who have achived remission fairly quickly and simply and remain resistance free. This in turn has started to raise the possiblity that Imatinib may actually be a cure.

In order to understand this further we need understand that Leukaemia is essentially a disease of the stem cells. In each active stem cell parts of two chromosomes (the 9th and 22nd) switch places. As a result, part of the BCR ("breakpoint cluster region") gene from chromosome 22 is fused with the ABL (the Abelson proto-oncogene)gene on chromosome 9. Imatinib effectively acts as an inhibitor to stop this process occurring and therefore proliferating and in fact it kills them off hence the move towards remission.

Now what the specialists don't know is whether this process occurs to the extent that the mutation stops completely and there are of course many factors to take into account, the main two in mind being as follows:

1. Do I have a pre-disposition to the chromosal mutation i.e. even if I get rid of every single leukaemic cell will it matter if my body just wants to continue operating in the wrong way.

2. What about dormant stem cells? Stem cells lay dormant for 20 years and because no one can actually read anything from a dormant stem cell and Imatinib does not effect these cells either we have no idea whether these cells are effected by the leukaemia, i.e. when they finally come to life will they be mutated or will they not have been effected because they were dormant. It's a great unknowable.

However they have started to do some trials in Scandanavia to test the cure hypothesis. Volunteers are coming off the treatment having been in full remission for a period of time to basically 'see what happens'. It's a fairly low risk strategy as it has been proven that those that have achieved remission quickly and come off for a period only for the leukaemia to return do in fact achieve remission again just as quickly when they return to the medication.

So there you have it, who knows eh. If Dr. Brian Drucker has found a cure for Cancer I can't think a nobel prize for medicine can be far away.

By the way

The leukaemia's fine.

Sorry I haven't posted about it.

I met up with a friend the other day and almost immediately after he was through the door he said 'How are you?'. He followed that up by saying 'sorry it's just that every time I see you I forget to ask and then kick myself when I get home'.

I thought 'well great' because, I don't want to come across as Mr ill but I guess sometimes that's unavoidable because you are. Thankfully I'm absolutely fine. My physical state is good and progressing towards 'cure'. I'll come back to cure because there's a very long post in that and it by no means concludes that there actually is a cure. And my mental state is much better. I've had quite a few counselling sessions which have really helped and I attended a CML patient conference in Edinburgh in November which was a revelation (again that's another post).

All in all I hit 2008 as happy as I've ever been and I'm not just saying that for effect. See below.

My New Year's resolutions

1. Start writing more on here again, my lovely neglected blog

2. Treat my friendships with the care they deserve

3. Say less things for effect and more things because I mean them

4. Write things down in my diary

5. Buy a diary

6. Don't lose my temper with Eben because something else is annoying me

7. Put things back where they belong, not on the nearest available surface

8. Clean my bike as soon as I get back, not when the mud's dried on solid

9. Stop saying 'I'm doing a triathlon next year'

10. Stay happy

Happy New Year everyone.

The most Christmassy programme ever?

I've watched Heston Blumenthal's Perfection series with mounting awe and childlike glee. This obviously isn't a cookery programme, it's an opportunity to watch the combination of artist, mad scientist, true English eccentric and shy little boy create something wonderful. Rarely has a programme captivated and left me as consistently open mouthed as this programme has.

The whole thing is utterly barmy. Of course it has it's critics, but they miss the point, this is not about conspicuous consumption, he's not telling us to head off to Oman to whittle Frankincense spoons for Christmas, he's making a piece of entertainment. His restaurant is about experience, it has the underlying philosophy that food is more than just taste, it is evocative and all the senses are involved.

That's why the programme works so well, because he takes you to the table through your TV. Watching that celebrity Christmas dinner party eat the meal was almost as good as eating it (atually I'm certain that's not true as it looked like a slightly otherworldly experience), their reactions were so pronounced and profound that you felt how good it was. It's rare I get all effusive, but I'm afraid good food always has done it for me, it's all about the atmosphere, this is the first programme probably since Floyd's that recreates that fabulous eating experince and you get it right through the screen.

Alright, I'll stop talking bollocks now.

Get in

Still a townie at heart

I read this from Caitlin Moran this morning and it made me smile from ear to ear. I can't help but agree with her. City sounds have always been a comforting thing for me and remain so now that I've moved out. There's nothing like a thumping bass, or someone shouting 'eeeeeenin stanit' in your ear. They're noises that make you feel you haven't lost all sense of life.

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.