Doesn’t the world shine when the sun does? I know it’s uncomfortable and sweaty and humid but Leytonstone feels like St Tropez to me at the moment. Well St Tropez without the sea and the glamour and the lovely restaurants and celebrities. Ok, it’s nothing like St Tropez but I suppose what I mean is, it feels elevated somehow. We have 'Horizon' café that sells erm…coffee and cake and sometimes I sit ‘paddling’ poolside with my ankles in the water sipping a ‘Hoegaarden’ which is pretty glamorous as far as my life goes. Oh I just love summer because, apart from the excuse to drink beer before tea time, the kids can run naked around the garden, making potions out of mud and slugs in pots, splashing in water and eating ice cream whenever it takes our fancy and we sometimes say “sod it” have tea in the park and eat any old crap and don’t get home till the sun has dipped below my roof top. All the rules go out of the window when the sun shines.
Someone asked me recently if I was going to give up writing the blog now that Paul is in remission and indeed I’m sure a few of you probably thought I have – it’s been so long since my last entry. But as you can see, no I haven’t given up. I think that would be rather pre-emptive on our behalves. Paul being in remission is only part of the journey. In some ways the really hard work begins now. He has to work to keep the bastard from the door.
So, what next? The doctors have said that without a bone marrow transplant in the near future the cancer will certainly come back, such is the aggression of the cretin. There are two types of transplant: 'autograft' and 'allograft'. The first uses stem cells harvested from Paul while he is in remission and given back to him. This is a less risky procedure but possibly less effective in the long term. An Allograph uses cells from a donor but there is a 25% chance of mortality from complications that can arise from either rejecting the bone marrow or from infections due to a prolonged neutrapenic stage (possibly three weeks of no immune system – not good). So ‘a rock and a hard place’ does not even cover it. The doctor’s believe that an 'allograft' is the best way forward and we agree that there is no point pissing around. It's risky but it gives him the best chance.
As far as a donor is concerned it has been proving difficult to find a match as he has an unusual tissue type, but in the last week it looks like they have found someone who is close enough. Apparently the match scale goes up to 10 (with 10 being the best) – they will not consider anyone under an 8 and the person they have found for Paul is a 9. So not the best, but not the worst and quite frankly we are grateful for that. So now its a case of tracking this person down and making sure they are fit enough for the procedure and if they still actually consent to it in the first place. So its early days but hopefully Paul will be back in some time at the end of July. I say that like I want that to happen but obviously there are mixed feelings attatched to this. I lose, I gain - hopefully. Absence makes my dreamboat grow stronger..........
In the mean time we are enjoying being a family and eating loads and doing normal things. Paul had to go in for a little top up of chemo last week, so he spent 5 nights in a hotel opposite the hospital as an outpatient! Apparently its cheaper to put them up there than in hospital. He got most of the chemo there and came home on sunday, just in time to roast a chicken. He will be neutrapenic this week, but at home, which is a little worrying – but lets face it he is more likely to catch something nasty in hospital anyway. I also had the pleasure of seeing him inject himself with chemo this evening which was actually quite fascinating – might ask if I can do it tomorrow night………
This has been long and its hot and its time to go and gaze at the evening sky. Just want you to remember that the fight is not over and we still need your positive thoughts. I’m terrified we might fade from view a bit. I think I have relied upon the knowledge that so many people have been chanting for Paul – like you are a collective comfort blanket or something.
So enjoy the sun and the waning of the solstice, make the most of the long summer evenings and think of Paul when you can. I remember some time back how some I imagined Paul stripped to the waist, sipping a beer and standing over the BBQ and I can happily report that this imaginary scene has become a reality…….on more than one occasion…….
H and P xxxxxxx
P.S I ate some salami, and some chorizo. The chorizo was nicer and I have bought a horseshoe of it, which i keep under my pillow and nibble from time to time. I can thoroughly recommend being a meat eater after 22 years of abstinence – it’s really exciting……..