Thanks for all the support messages on Facebook this morning. They were a welcome distraction as we bombed down the A27 towards Southampton, in pouring rain, for my 3 month bone marrow biopsy. With the pentamidine first this morning was never going down as one of my favourites!
So first up… the pentamidine inhaler. Bloody awful stuff, but vital as it stops PCP which is a particularly nasty strain of pneumonia with a high mortality rate. That knowledge doesn’t make it any more palatable, and after about twenty minutes and a nasty coughing/choking fit I was done. I sauntered nonchalantly back to find Zig in the waiting room, pleased that it was over!
That was followed by a quick interlude for coffee and sweets to take the taste away, then straight in with Kate for the bone marrow sample. I have to say, that is one of the most painful procedures going. If you don’t know what’s involved, imagine lying on your side while someone administers local anaesthetic through a number of smaller needles and then jabs a really big needle into your back and keeps on going until they have pushed it into your pelvic bone!! The gas and air really helps though, and perhaps even more so this time as one of the nurses said it’s like drinking 6 pints of Stella! After nearly four months of no alcohol that was the highlight moment of the day!
I haven’t really had much contact with Kate before as she was Jane’s consultant, but she was fabulous. So knowledgeable and really great at explaining things.
I had noticed a bit of a rash on the side of my hands over the weekend, so asked her about it. Apparently it’s a bit of Graft Versus Host Disease, which set me off into a bit of a panic. But, she was quite pleased because it’s a sign that Jane’s marrow and immunity is taking hold and a by-product of it having a go at me is that it also attacks any leukemic cells that are still swimming around, making the whole possibility of a relapse less likely! So, apparently ‘a little GvHD’ is a good thing, but a lot isn’t. In fact, so much so that if it hadn’t appeared they would have given me more of Jane’s cells to provoke it. Anyway – I now have some creams to apply, which Zig kindly pointed out are used on horses, what a charmer!! Fingers crossed then it will not spread and just go away at some point.
Now we wait for the results of the blood tests from last week and todays bone marrow cultures, all of which I should know next week. But according to Kate this is now the difficult bit where they have to fine tune the procedures, tweaking the mix of this and that, to get the best results. There’s still a long way to go, and a visit to hospital always brings me down to earth with a bump.
Today, whilst chatting to another leukaemia patient in the waiting room, I have heard about someone who was recently diagnosed with Leukaemia but didn’t pass the breathing test so they couldn’t help him. He died last month. Another post-transplant patient wasn’t ‘patient’ and caught a cold which put him back into hospital where there were complications and he is now in a wheelchair, and another chap who had really bad GvHD and had to start all over again. Two years later he is still taking five times as many pills each day as I am and can’t drink alcohol because of the damage the drugs have done to his liver. The remarkable thing is the way he stands there and says, ‘but I’m ok with that – I’m still here!’
But… they are pleased! I am still doing well, I just need to be patient and careful. It’s a bit of a fucker that I really don’t think I will be allowed to have a small toddy at Christmas – but if that’s the price of having my life back I can cope with it!!