Wednesday, 4 March 2009

4th March

Paul and I have decided that it might be best to start a blog as it's quite hard to include extra people when you have started a thread on Facebook and anyway not everyone is actually on Facebook. I was a little concerned about the full public nature of this but Paul said "Fuck it what have we got to hide" and I have to agree. The more people thinking of Paul the better.....

So he has started a second round of Chemo - this time with different drugs. The first lot he was given, amusingly called CHOP ( kept thinking of Cassidy karate chopping Lymphocytes!) wasn't working as effectively as they would like. Although it has shrunk some of his glands and his chest is infinitely better, they have decided to diversify. I think the doc's know pretty quickly if a particular drug is working or not and if they aren't happy they ditch it and move on. This next lot is apparently a bit more hardcore in terms of side effects and he is going to feel pretty shitty soon. It was scheduled to start tomorrow but they had the drugs ready so they started tonight. He's also had a lumber puncture done today where they administer some preventative chemo into his spine to stop it spreading there and to his brain. They will also take a sample to find out if it has got in there already. In fact Paul has asked a special request of you all to focus on a negative result for that. He really wants to hear some good news and says if you can all focus your chanting on "No Spine, No Brain" (sounds a bit insulting but he doesn't mind!) that would be great........

So it's full steam ahead again. The consultant today was lovely - I don't usually get the chance to be there when the doc's go round but I was there early today and she was really upbeat and encouraging, she said there was no evidence to suggest it had spread so not to worry. On top of being really nice she was also incredibly pretty, petite and ridiculously young. I found myself drifting off as she was talking about complex drugs and pondering how someone with such a stressful job can have NO wrinkles at all. Hence the reason why I can't tell you the name of the latest medicine! Will find out and report back in case there are any fanatical googler's among you.

I have been asked many times how Paul is within himself so I might have a go at answering this although even I will never fully understand how it is to be him right now.

He is grumpy (what's new) bored and fed up with the shitty food (no surprise) and desperate to come home. But also upbeat and funny and charming the pants off the nurses (male and female) .You can see they love coming in to see him. The nurse that takes his blood every morning, the woman that sweeps the floors, the octogenarian that brings round the 'Metro' every day, the doctor's, the consultants the woman that makes his bed - he treats them all with the same reverence and good manners. I have always loved this about Paul and it's interesting to see the effect it has on those around him. Sometimes you can see he's overwhelmed by the enormity of this but mostly he talks about it as though he's got a few hard shifts of work ahead of him. Like it's 'no bother' as he would say. The idea of it spreading to his brain and spine unnerved him for a bit but if we all chant hard enough maybe he won't have to worry about that. I'm going almost everyday with supplies; I am determined to help with the food situation and hopefully the kids will get to see him for a bit over the weekend if their perpetual colds clear up. On top of that he's got a good view up there on the 13th floor and his room points east so we wave from time to time........

We are still in the thick of it, the utter, sticky, thick of it but we have been in a worse place before. It has been more desperate before. Paul said it's strange because he actually doesn't feel that sick and that it's strange to think his body is fighting something really horrible but ultimately he doesn't feel that bad. I think that’s a good sign.

Must go and finish constructing a half eaten book out of a cereal box for Cassidy's dress up day in school tomorrow. They have to be a favourite character from a book and he had chosen 'The Incredible Book Eating Boy' - why he couldn't have been Peter Pan or Captain Hook or something you could just buy from a shop I don't know..........Thanks for all the support guys, Paul and I are sending our love to you all tooH and P xxxxxxx


  1. No spine, no brain a great chant and will begin it on way to school.

  2. No spine, no brain, was said on the train, Parliament Hill, and now in my meeting room. It's going to be chanted a lot. Love love.