quick update

Just thought I'd say that Paul won't be going in till Fri at the earliest as his cough is still hanging around annoyingly. But hopefully the chemo will start then........

Spirits are high in the Stevenson - Mackey household. The initial depression at such a kick in the guts has made way for, weirdly, a bit of normality. The Cancer may be back but there are still cardboard spaceships to be made and cakes to eat, rain to dodge and swings to push........

Full battle mode.

I have been putting off writing this and my fingers are very heavy on the keyboard as I do so. Paul had a call last week from the transplant doctors and they said that the result of the PET scan has showed that the cancer is back. There are signs of activity in the nodes above his heart in the chest area. To say we felt like the air had been punched from our lungs, like the world has slipped on its axis is, well, not a very good description of how we felt, or rather, feel. It’s so shit!

The upshot is that they will have to give him more Chemo to try and get him back in remission again before they can do the transplant. So he goes in next Wednesday now for the chemo as an outpatient. He will be back in the hotel for a bit, then home and then back in the hotel while he is neutrapenic. They would probably have got him in last week if he hadn’t caught a cold and cough which is still rattling about a bit. He has been prescribed Tamiflu as a precaution and antibiotics, though he doesn’t have a temperature so hopefully it’s just a standard cold that he can shift by next week. On the positive side his lungs are looking much better apparently so they are back to considering the ‘Full Body Irradiation’ transplant as they think he is much better shape to withstand the treatment. But he needs to get back to a point of remission so please all chant for that.

It’s really highlighted the sheer, brutal aggressiveness of his cancer. It’s so disappointing, perhaps we have been too complacent, too happy, we have taken our eye off the fiend and it’s slipped back slyly. I know when he goes in next week he will have one of those conversations with the doctors that will not be light and optimistic but leaden and grave. At least we have had so many of these now that we know what to expect and can take them with a shovel of salt.

I need to get back into defiance mode. A couple of days ago I had one of those shivers of untainted positivity that can be so few and far between. I was hanging out the washing and Cass was on the computer with Paul playing 'Robot Rage' and Kitty was lounging on the chair with her thumb in her mouth and there, for a split second, was my parallel life, the one that was and will be again. I felt confident and sure that this is just a setback and that for the first time in a few days I wasn’t faking the optimism.

I’m taking a new stance though in my mental exorcising of the demon. I have often found myself screaming at the cancer in my head telling it to fuck off etc. But have decided that if I perhaps tell it politely but firmly that it has made it’s point, we are fully aware of it’s awesome power and ability to regenerate and are well aware that it could have the last word. But that it really has overstayed its welcome now and that the ‘big’ thing to do would be to back off and let us rebuild our lives. Well I'm willing to try anything.

Paul said yesterday that it’s hard not to feel guilty when the bad thoughts close in. I agree but I also think we need to feel those things so that we can move on from them. This time it will be harder to muster the energy as disappointment is an emotional leech. But it will happen, we have no option. Paul says this too – there is no option, no other ending and I believe him, I truly do, even if he finds it hard to believe it himself from time to time. It's back to full battle mode.

So chant, pray, wish cast spells - just do the business again people. Will keep you posted

chilli, mud and broken glass

Radio on, glass of red wine, back doors wide open as the rain thrashes against the windows and lightening divides the sky. There’s nothing like a good storm to make you feel cosy and content in your nest. Especially when Paul is upstairs putting the kids to bed – well he hasn’t technically got cancer anymore so he can do some of the manual labour Tee hee!

He’s actually just come down and is about to make some more chilli concoction as I managed to smash the last jar yesterday. Hot chilli and broken glass on the floor as you children run around with frenzied cabin fever is not a good. I actually had to break the self imposed swine flu lock in yesterday as its just too hard being cooped up with kids. I have never been very good at staying so it has been torturous There are only so many things you can do with glue and paint and only so many times you can watch Harry Potter/The Little Mermaid and only so many ways to say “be nice to your brother, stop hitting your sister, please don’t put crayons in your ears” and only so many rooms to hide in…………..

To be honest we are more likely to get swine flu from Paul than the other way round as he has been going in and out of town all week for various appointments and tests at the hospital. He’s been to the dentist (they sort out his dental health to lower the risk of infections) had a lung function test, a kidney function test, MUGA scan (for the heart) and today he met the transplant doctor. They told him today that he wouldn’t be getting the full hardcore ‘Total Body Irradiation’ transplant as initially planned and instead he will be getting a ‘Reduced Intensity Mud Allograft’ . I know I know, it sounds like a treatment at ‘The Sanctuary’….The decision is that because of the past trauma to his lungs, giving him such invasive and aggressive treatment could well finish him off! They don’t mince their words. They weigh up the risks and it has been decided that although there is more risk of the cancer returning with the mud transplant the risk is greater that he would peg it with the other one. Ah the familiar rock and a hard place again, a place Paul and I are very familiar with now.

I was about to try and put in a nutshell-ish what this transplant will entail. But as I sit here I realise I am wading a little too deeply into unknown territory to be properly informative and might start making it up a teensy bit. So will get it straight and then write a technical post. He will be going for another PET scan tomorrow – I guess to asses whether he is still in remission. So fingers crossed everyone, though they can still do a transplant even if there is a small resurgence. Actually one of the doctor’s did say today that even if the cancer did come back after the transplant it wouldn’t be the end of the road and there would be other treatments which is reassuring, but lets hope we never have to cross that bridge…….

Paul has just given me a spoon of hell fire to taste. It is shitting hot as fuck! But has a nice little zip of star anise before it fades to a warm thrum on the lips and tongue. Hmmm the nest is suddenly cosier and just a little warmer…….

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……..