Slightly frustrating

Well 5 weeks in I'm feeling very well considering. I got a rather lovely note from my Aunt a couple of days ago and in writing to her I've kind of written a blog entry.

I'm still cycling in to work every day, I have stopped running though as I have found my current drug regime is making me quite tired. A couple of weeks ago I found out that I am Philadelphia Chromosome positive (PC+). Being PC+ means I am able to take Imatinib, which you may remember is the drug that aims to switch off the signal to overproduce white blood cells. Rather frustratingly I won't be able to start the new regime until 29th May for a variety of reasons. First I had to have some virology tests, second I had to freeze sperm, as the drug is suspected to make sperm toxic and in the event that we wish to have another baby it's likely we will have have to go the IVF route.

Having completed those two things I was supposed to start my new regime on Tuesday, however on seeing my consultant she informed me that she's keen to perform a stem cell harvest. It was a decision that was both disappointing and heartening in equal measure. Disappointing in that I was keen to get on with things and heartening in that the decision suggested that my consultant is right at the forefront of fighting the disease. In brief a stem cell harvest is performed at this stage in order to freeze store my white blood cells at the stage of the disease I am at currently. This is performed in case the disease progresses, at which point they will be able to replace the deteriorating white blood cells with the stored cells at this stage. The main debate is around whether to take cells now, or once I am on the new drug and it has proved successful in reversing the disease to molecular remission i.e. the cells are in much better shape than now. At present there is no clear agreement in the profession, so my consultant has decided to take one set now and one in 18 months time, at which point (hopefully) I'll be in much better shape. The issue is clouded by financial constraints, in that there has to be a justification on the trust's part to store two sets of stem cells on my behalf, however at this stage there is no real pressure on this area of treatment. However, in future I may be asked to make a decision as to whether I pay to store one set.

Anyway, the reason I couldn't switch regimes on Tuesday was that I have to be completely drug free for two weeks. It means I have to come off the regime I am on currently as well, which in it's own right is frustrating as it had succeeded in lowering my white blood cell count from 143 to 92 in 4 weeks (target 4 to 8) and by coming off the drug it will more than likely jump back up to the initial level.

Despite all this, I am remaining generally positive. I am having my low moments which I guess is perfectly normal, but the boys keep us extremely busy and the fantastic side effect of this situation is that it's prompted us to get off our arse and do, rather than talk about doing any number of activities. We've also got the move pending which means we've got plenty on generally. Nicky's a bit more up and down and quite angry about things in general, but I guess once again that's normal. We will take this as an opportunity to make the most of what we've got and make sure we squeeze every last ounce out of life.

This may be a little bit early...

...But I'm going to post this anyway.

Wednesday before last- so that would be 5th April 2007 - I was diagnosed with Chronic Myeloid Leukaemia. It's not something you expect to find out at 34 really.

The Thursday before that I'd gone to my GP and complained of nightsweats. I'm not talking a little bit of moisture here I'm talking soak the duvet through from top to bottom. At first he said that this was something that could be completely random and unexplainable, but after discussing what I might be able to prevent them from happening he suggested I come in for some blood tests.

So up I rocked and had the routine tests and then at 7pm that evening I got a rather panicky phone call from my GP.

'Errr errr you've got to go to St Thomas's tomorrow at 9.30am they're expecting you. You've got a very, very high White Blood Cell count'

'Ummm Ok, what does that mean then?'

'Well they think you have leukaemia. So they need to test you again. Do you have any questions?'

Now I've since found out the GPs are likely to come across about 5 cases of leukaemia in their entire career so this phone call isn't the most common they make during their working life, nevertheless I can't imagine how she could possibly have handled it any worse other then screaming 'you're going to die, you're going to die, oh pity your children, you're going to diiiiiiiiieeeeeeeeeeeeeee'

Anyway my response was stunned silence followed by 'No not really, I have no idea what to ask'

'Errr ok, well if you have any questions I'm sure they'll be able to answer them tomorrow'

'Erm OK right, bye'

I came off the phone numb, my mind a complete blank and then when Nicky came down from putting the boys to bed I burst into tears. My next response was to ring my Dad who understandably was rather shocked and then I got on to the Internet. My searching lasted for about 5 minutes, at which point I realised that I could probably surf all night and still not come up with any answers based on the scant information I'd been given by my inept GP and so I waited. I slept well, but then I always sleep well regardless of what's going on in my life and the next morning I trooped off to St Thomas's with Nicky.

At 9.30 I sat down with a Registrar and she delivered the news. From the blood sample they had analysed they were 99% certain that I had Chronic Myeloid Leukaemia. My White Blood Cell count was 145 and it should be somewhere between 4 and 8. She then went on to say that they were going to run a whole raft of additional tests, more bloods, a bone marrow sample and bone trefanning which is taking a piece of bone from my hip for analysis in order to confirm diagnosis and also determine which treatment options were open. She then said, 'I'll admit if you'd presented 10 years ago we'd be telling you that you had 5 years, but things have moved on so rapidly that we're very confident we can tackle this very effectively. We've made fantastic strides and there are drugs now available that are proving extraordinarily successful in the fight against the disease'

The day flew by in an absolute whirr. I had a very uncomfortable procedure under local to take the bone, had half my blood drained and met my consultant who I can comfortably say is one of the most amazing people I've met in my life. She explained exactly what was happening. Basically (and some of this may be inaccurate and very brief as I'm new to this) two of my chromosomes have swapped to create what is called a Philadelphia Chromosome - basically it's a mutant. This Philidelphia Chromosome is in turn creating an enzyme which in it's turn is stimulating the creation of additional White Blood Cells. In itself having a huge amount of White blood cells is not the problem, it is more to do with the maturation of those cells or lack of in fact. Although she doesn't know she suspects I've probably had the condition for approximately 6 months judging by the number of non-maturing cells which are relatively few at this stage.

What that meams is that I'm in the first stage of three i.e. the Chronic phase - typically untreated this would last between 3 and 7 years, this would then turn in to the acute phase which could last between a year and 3 years and then finally it would transform into what is known as the 'Blast phase' which is around 6-9 months.

Now for the good news. 7 years ago NICE passed a drug for use in the UK going by the brand name Gleevac, the drug itself is Imatinib. It's effectively the first drug that has been developed to target the root cause of a cancer. What it does is aim to switch off the signal from the Philidelphia chromosome and thereby halt the over-production of White Blood Cells and eventually reduce the count back to normal i.e. between 4 and 8. At this point you can be counted as in remission and they can say they have achieved 'molecular cure'. That doesn't mean the cancer's gone but it does mean it is no longer having any effect. So if a patient in remission comes off the drug they will end up with the White Blood cell count going back up.

The stats I was given are thus. The drug can be used by those sufferers that are Philidelphia Chromosome positive of which 95% are. I've subsequently found out that I am one of those 95% and of those 95% - 80 to 90% are in full remission, this is based on the 5 years of data that they have available since the drug was introduced. I have to say if I had to have cancer I don't mind those odds, they're pretty fucking good. What they can't tell me obviously is whether those patients will remain in remission, however, they have said there is no reason to think that this trend won't continue and that is certainly how our mindset should be.

At the end of the day I was put on to a drug called Hydroxycarbamide, this was the drug that pre-dated Imatinib and is a much more generic drug - effectively it aims at reducing the White Blood Cell count by blasting the cells but does not have the molecular changing properties of Gleevac (again this is a desperately basic description of what iot does). I will be going on to Gleevac after a couple of things are cleared up. First, I have to make a sperm donation as the Imitnab will make my sperm toxic and second I have to make a decision about whether to enter an ongoing international trial - which I'm not going to expand on just now - but basically I have to decide how many side effects I'm willing to put up with.

As it stands 2 weeks later I'm in pretty fine fettle under the circumstances - I had 6 days away with friends over Easter which really helped to clear the head, I'm at work (who have been very supportive), I'm still cycling - at least until the side affects of the drugs kick in (which will be a rough ride for up to 3 months by all accounts), the kids are good, Nicky's sister and parents are down for a week and a half so she has a lot of support, my step mother has decided to put off her search for a new job to be available whenever we need her until we find our feet and on and on.

I have to say I'm very glad I'm in this situation having got myself thin and fit and without the hassle of running my own company anymore. Any time in the previous 8 years I would have been in a far worse state. We're also 2 months off moving out of London. So alot of the traditional 'where's my life going' thoughts have been negated because we're in the middle of changing it for what we believe will be a far better life for us and the boys.

All in all if shit like this was going to strike it couldn't have done it at a better time and as I said to my dad the day I was fully diagnosed 'Actually you know what, Bollocks to it, I'm not having it, I've got too much on'

Traumatic road traffic accident

I stood as a witness today at the inquest for the motorcyclist that I saw die in late August. It was a very strange experience all in all, I'm not going to go in to all the details, but needless to say just as we thought at the time the set of circumstances that led to his death were a trillion to one shot and it really was a case of wrong place at the wrong time for the poor guy who died. No one did anything that isn't executed a million times a day on Britain's roads, no one was speeding (or anywhere close to it), no one had been drinking, no one saw the bike until the very last minute all in all it was a tragedy.

Having said all that I may yet have to attend court again this time magistrates as the taxi we were in could be prosecuted for leaving the scene of an accident. It was very odd having to sit in the same room as him knowing that he'd initially denied that he'd been there at all, a stance he changed when they produced CCTV evidence.

We'll just have to wait and see.

From Langley Park to Tooting

So there I am climbing in to my brother's car and in the passenger side pocket there's the clearly identifiable font that appears on the back of Prefab Sprout's, From Langley Park to Memphis. I reach over excitedly open the CD case and my hopes are dashed as I'm confronted by an empty jewel case. So I switch on the engine and joy of jos it's in the CD player.

I'd completely forgotten about this album, but it really is pure pop perfection. Now consider that when it was released in 1988, The Pixies were just about to release Surfer Rosa which is by the way my favourite album of all time. I wasn't in the slightest bit embarassed about loving this record.

Rather oddly though, for some reason as I was driving along listening to cars and girls it brough back huge memories of my 3rd Year ski trip which isn't possible as that was in March 1987 a year before this was released and anyway 'Money for Nothing' by Dire Straits (I hated it even then) was the sound of the trip, but nevertheless my memory log is malfunctioning and I can now remember things about that trip away that I'd completely forgotten about.

To end:

Brucies thoughts - pretty streamers
- guess this world needs its dreamers may they never wake up.

It's a lovely lyric I always thought.

Very very tired

I haven't enjoyed work so much in a very long time but God I'm tired, it's not so much long hours although we have a big pitch on this week and I've been putting in the time, it's more the intensity of it. Doesn't help that I'm now on to my third different illness of the year. I just can't seem to shake them off. I've only cycled in 3 times since the New Year. With luck this weather will kill things off.

Happy New Year

Anyone for a Cadbury Creme Egg.

Ridiculous isn't it.

Merry Christmas one and all

Hello all. A belated Happy Christmas to you all. I can report that it's all going extremely well. I've had the in laws here for 6 days now and not a cross word yet. It's all down to the military planning that Nic's put in and everything's running like clockwork as a result.

One of the nicest things is that Eben's not even half way through his presents yet. We took a view this year that he should just get a couple of things on the day and then we'll go hunting for a couple a day that Father Christmas has hidden round the house.

It's been lovely to have some time off and spend it with the family. I feel like I've had a lot more time to get to know Louis. Anyway, I'll try an d get back and blog a little more after Christmas. Things have settled in to a nice routine with work so I'll have a bit more time.

Have a fabulous time people and see you in 2007.

Just when you think 'at least the stats are on your side'

You know I'm a geek right. Well if you didn't, then please forgive me for the following. I was having a quick look at the health of our top order this evening and found that the top 5 in our unit at the mo. are in extremely good nick.

Strauss 44.64 33 Tests
Cook 49.53 11 Tests
Bell 46.57 20 Tests
Collingwood 47.64 17 Tests
KP 51.75 20 Tests

Granted they've played only a few tests so far, but despite that when was the last time we had a top order that all averged 45 and above. I can almost guaratee you that it's never happened and yes I know I'm not taking account of covered pitches, bigger bats, shorter boundaries, less dangerous trousers etc etc. yawn. My brother called the easy batting argument right the other day. He said 'I don't know about batsmen having a field day at the moment, but the stattos definitely are' (made me laugh)

Then I looked at the Aussies:

Langer 45.93 102 Tests
Hayden 52.83 86 Tests
Ponting 60.98 107 Tests
Martyn 47.20 67 Tests
Hussey 77.41 13 Tests

Bollocks.

By the way if Punter ends his career with that average (and there seems no reason why he won't seeing as he appears to be getting better with each match he plays), he'll be second on the all time list behind the Don (of course).

P.S. I'm ignoring Hussey that'll come down - at least i bloody hope it does.

Collingwood nails on his MBE

In the aftermath of last years Ashes Paul Collingwood along with the rest of the England team who took part in that most amazing of series recieved national honours for services to cricket.

Now it could be argued that Collingwood's beligerant 10 runs in the second innings at the Oval provided KP the breathing space to take Brett Lee to the cleaners after the lunch break on the final day of the final test, just when England were in danger of getting skittled and then losing the game. However on the face of it Paul Collingwood MBE had scored 17 runs in that test and at the end of the series stood with stats of played 3, innings 6, Runs 106, High score 36, Average 17.67.

Spin on 14 months and Paul Collingwood having along with Pietersen and arguably Bell been the only stand out bats in a woeful Brisbane Ashes performance stands at the end of day 1 of the 2nd test in Adelaide, at 98no. the glue of a gritty England statement of intent.

Looks like he's decided to earn that MBE postumously. Good on yer lad, keep gritty and try and rub some in to your Geordie mate Harmy