Normal minutes

Hello all, just thought I should let you know that the bone marrow is still almost def going ahead on the 26th July. I know how that sounds quite flaky but everything has to be completely ok with the donor before it can all go ahead. So nothing is certain until pretty much the last minute.

I have such mixed feelings. I am trying not to count the days down. You know when you go on holiday and sometime around the beginning of the second week you get acutely aware of how many days you have left? Well thats kind of how I feel right now. I'm trying to live in the minute because these minutes have been so, well, normal I suppose. But its impossible not to be aware of every day ticking down to the transplant. But I'm also freaking a bit about swine flu in a way that didn't bother me last week. I know a couple of people that have it and it's been confirmed at Kitty's nursery and it's edging closer and closer to home. So in some ways I'm desperate for Paul to be cocooned on the 13th floor of UCH . But then I also know that the hospital is the worst place to be when there are infectious viruses flying around, but he will be in isolation to a degree so that has to be a bonus.....Arrgghh help - I have to say this is def not a good time to be immuno-supressed!

Tears are streaming from my eyes, my head is throbbing, my tongue feels like it has swollen to ten times it’s usual size I have a tingling sensation above my cheeks and there are beads of sweat in places I had no idea there were even glands…….

No the cancer isn’t back and I don’t have swine flu. I have just tasted one of Paul’s new chilli concoctions. Forget the hummus, Paul is currently obsessed with making these amazing chilli sauces which are bloody lovely. Hot – freekin’ hot - but really bloody nice. He has been in the kitchen all night and is currently blitzing away a roasted garlic version. We already have a very faithful friends and family following, so I know that a few people will be excited to hear he has come up with a lime version as well………Fran and Sean; he has already put aside a jar for you both………

Anyway back to business. Time is edging closer to ‘body zero’. I write this because apparently when Paul has his transplant his current immune system will be wiped out and a new one put in so all the infections his body has memorised, like chicken pox and measles etc will no longer register. I really have to do more reading on this because it doesn’t seem right even as I am writing it. In fact most of the science behind stem cells and transplants makes me realise I am stuck in some 60’s science fiction fanzine as far as understanding the processes it takes to rebuild Paul. As far as I’m concerned the transplant is up there on a futuristic level with flying cars and living on the moon.

But with a little tutoring from Paul (and a big envelope of paperwork) I am managing to grasp the basics. Since I last wrote they have found another donor who is a 10 match (the best) so that means less risk of graft v host syndrome where the body rejects the donor tissue. So that’s bloody brilliant. It might put the transplant back by a week or so till they can sort everything out but that’s fine.

I do really need to fill you in properly on what is exactly in store for Paul. I think it will help me to see it in black and white. But I need to read this big envelope of paperwork in full before I can do that. I know it’s going to be pretty bloody shit for him. Any paragraph that is titled ‘Full Body Irradiation’ does not fill your mind with vision’s of kindly nurses administering tiny little injections from time to time.

Will write more tomorrow. Have decided to take kids out of school and playgroup as swine flu is getting too close to home. Therefore, will have more time on hands as we batten down the hatches for the next couple of weeks and will be able to write more frequently from the frontline.

A date.....

A date has been set for Paul's transplant - 26th July! Am feeling a mixture or elation and terror. Elation because this could be our ticket to the future and terror because of the risks involved. Still, we have a few weeks to enjoy the summer and family life. Shit, I had better read up on what a transplant actually involves. Do marrow faries harvest the stem cells and magic the cancer away with their wands? Sounds plausible to me right now - better google it..........

H & P x

Stem cells, St Tropez and salami.

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……..

FR

Fuck Retirement, Fucking Rocking, Federal Reserve, Feral Ratbags , Fear and Retribution, Full Roast, Forget Reality, Frugal Rations, Fruity Raspberries FR, FR, FR what else could that stand for? Oh Yeah FULL FUCKING REMISSION!!

What can I say? We have had the best news today Paul is officially a cancer free zone!!!!. The boy, the dreamboat is sitting beside me as I type this and has been feeding me all the FR words. Shit what can I say we are a bit drunk and listening to old tracks and counting our lucky stars and going to bed.

The journey is not over but we can sleep sweetly for a while……..

Homecoming part 2

Sorry it has been a week again and this will be a quick one as I want to get back on the sofa with Paul who has been at home since last Thursday! Yes I have been getting on with actually being with Paul rather than talking about him in virtual space. Basically his temp went down and they finally got a diagnosis on what was giving him the fever - which was C-Dif – one of the many super bugs you get in hospital. Luckily he didn’t get it seriously and was well enough on Thursday to come home where he has been ever since.

He was wiped out by the bug a bit and all his hard work at the gym and with physio seemed to have gone down the spout when he first came back. It’s amazing how a week on his back can wipe him out completely, actually I suppose it’s not that surprising at all stupid Hannah he’s got bloody Cancer. I think I see him as some kind of superhuman man, slaying bugs and such with gladiatorial panache. But I suppose even dreamboats come aground every now and then……By the way for anyone that is confused by this dreamboat term – in the early emails before the blog, when Paul was in ITU the first time, I referred to him as my Scottish dreamboat. ‘Bleurchh’ you balk, ‘Schmaltz’ you shout, too true, I retort. But in those days there wasn’t a dry eye in the house and besides a bit of gooey romance has its place sometimes.

Anyway a few days with the kids seems to be setting him back on the right track. I think family time is the best medicine for Paul. Yesterday he was roasting a chicken merrily in the kitchen, we got all our old vinyl out and danced about (mostly Kitty), drank a bit of wine (mostly me). He’s ordered a food processor from Ebay. This is, he says, the answer to all our problems. We shall, he, says be making vats of hummus and the like. Unless hummus can cure cancer and pay the mortgage (I suppose we could set a table up outside and sell it?) I fail to see how this can help. He is very excited and fired up- so I suppose actually, therein lies answer. Seeing things in black and white does help to clear the fog doesn’t it?

So tomorrow he has to go back in as an outpatient for a PET scan – the one that tells us how much active Lymphoma there is in him. Am I repeating myself? Anyway we get the results on Friday so please, please all chant for him to be at least still in a ‘good partial remission’. Obviously ‘full remission’ would be better. In fact please, please aim high with the chanting for a ‘full remission’. If it doesn’t show this he will have to start more chemo and his odds of beating this bastard Cancer will be even slimmer. But I know this won’t happen, it can’t happen because we need him here, full stop, end of. He’s doing far too well at answering Cassidy’s questions and loafing with Kit’s to go and bugger off again. And the chicken was really bloody tasty!

Meat glorious meat – what next is the question? Chicken satay and sirloin steak, crispy duck with pancakes, Parma ham or chorizo, salt -beef - bagels? Paul’s just making himself a black pudding sandwich – there’s still enough vegetarian inside me to find that revolting.

Anyway will let you know the results, must rush back to the sofa

Kisses H and P x

Cool.

I thought I should report that Paul’s temperature has finally gone down. It’s the first time in six days that he has registered a normal temp and he feels marginally better overall today too. The fact that his neutrophils have finally started going up must be, in part, the reason why. I still find it incredible that the human body fights back with such instantaneous vigour. It’s game on again in the house of Stevenson- Mackey .

By tomorrow or the latest wed he should be back to safe levels and no longer neutropaenic. So depending on the results of his PET scan in about a week we will have a good idea if plan ‘ Paul convalesces with me and the kids at home and in the garden with some (hopefully) sunny weather’ will go ahead. Then we can action plan ‘ Hannah eats more meat’. Tee Hee!