options and stats

I got a call today from a, well, to be honest I can't remember what she called herself, but she works in the stem cell bone marrow department of somewhere. Or something.

She said that she wanted some more blood from to get my exact stem cell match. Or something. I explained I was back in hospital on Sunday night and where I would be and she could have as much as she wanted then, but I wasn't making the effort to go to my cancer unit just for that. She understood and is arranging for one of her blood-leaching minions to come and see me next week.

She seemed pretty clear on my case, so we had a chat. She explained things slightly differently (doesn't bloody everyone) but she seemed to know what she's talking about, so here we go.

Once I've had my 2nd E-SHAP treatment, they will take the CT/PET Scan and one of three things will happen

1. No change, enlargement or new tumour - well, that's is probably that, but we knew 'that'.

2. Near complete remission - unlikely but possible. If there is huge response then I will have the stem-call treatment but I will use my own bone marrow after the nuclear chemotherapy that destroys everything. Obviously this would be a safer procedure as there are no rejection issues.

3. If all tumours have gone into remission (some shrinkage), then I will have the same procedure but need a bone marrow donor. I really haven't read up about this yet, as I see no point but I do know it's more complex as a) you need to find a donor and b) even if you do find a match, there can be 'rejection' issues. I'm used to being rejected, so I think I'm in a good position here.

Some interesting stats

1. Globally only 10% of people who need a stem cell donor find a match
2. That's because ...

a) donating bone marrow to go on the database is bloody painful in the first place, so unlike blood the database isn't that big (more later)
b) There are very few (relative) non-white caucasian people on the register. People like myself are far more likely to find a donor, so don't let the 10% phase you too much.

However ...

The lovely lady I was speaking to said 'I do have your basic type here, because we took initial tests back in early September. We need more blood to get a more detailed match, but I can do a initial search for you to see how many people might be donors globally'

'How many people are on the database?'

'About 14 million'

'OK...run it through'

'OK, I'm showing 81 possible matches'

'Blimey'

'Well, at least that's some. Quite often I get zero'

'81 is more than zero, there is that'

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So there you go. Obviously I'll keep you posted with more info on this stem cell bone marrow thing should it become a viable option. I just don't want to read too much right now, as I'm trying to not project too much.

Had a brilliant day at work yesterday, really good to see everyone. Today was complete stress - the aircon unit in the server room went down AGAIN and most of my day was chewed up with that. Despite all the end-users somehow not needing a thing for three week, seem to all of sudden not be able to open documents without my help. Really weird. Anyway - reminded me of what a normal shitty days work was like.

I have just come back from speaking at AA an and I recorded in on a dictaphone. I will be presenting it on this blog for all to listen to in the next couple of days. It's about 30 mins long.

Until then ...

Pain in the Ass

I had a bone marrow sample taken from my thigh bone today. Don't recommend it.

I famously do not get on with dentists. I fight them. Generally they have to knock me out to get anything done of any substance. It's the anticipation of pain, rather than the pain itself that gets me. That feeling that at any given moment that sharp pointy thing could strike a nerve. I hate it. More than pain itself.

So there I am, with my pants down and my arse out. Waiting. I dare not look at those needles but I know they are big. At each stage of the three pushes it goes down deeper towards my bone, numbing it along the way. But all the numbing in the world doesn't stop me panicing and cletching my face up into a small ball.

It wasn't pleasant. The 'nasty bit' of the procedure took about 10 mins or more - hard to say ... but the bit where they pull out the blood and bone ... oh god, I don't want to write about it anymore because it's making me squeemish again. All you really need to know was that I ended up calling the doctor a 'f**king b*stard', which I later apologied for.

The end result was a small 'worm' of bone marrow and some blood for further investigation.

Apparently, I will have to have to get used to this. As a various time during my chemo sessions they will need to do tests to see how things are coming along.

Pain in the ass.