Thursday, 27 August 2009

For the love of life.....

It’s been a hard few days. We had a meeting with the consultant on Monday and we were told that although they were hoping to get certain drugs etc (the pralatrexate thing hasn’t worked out – they won’t give it on a compassionate basis) they really think that Paul’s cancer is incurable and that though they will keep treating him and keep trying to prolong his life they do expect the disease to take over sooner rather than later. I know these are things that have been said before but I suppose now that we are nearing the end of the treatment and choice of drugs it becomes more and more likely that the disease will win………

I know this sounds like defeatist talk – it isn’t. There is not a minute of the day when I do not think about the future with Paul in it. It’s just that for the first time in this intolerable fight I have had to think about a world in which Paul might not be. I have obviously thought about these things in my most dark moments but both Paul and I have had to be – well practical. If you don’t talk about worst case scenarios and they happen then you are fucked. You can’t open up conversations when someone is gone so we had to do the some of the hardest, frankest and most painful talking in our entire 13years of being together.

The hardest decision was to tell Cass that his daddy might die. Christ it pains me just to type those words. But I am so proud of the way we did it, our bravery and most importantly the bravery of my two boys. Paul told him that the doctors were still trying to treat him but that they thought the cancer might be too strong and that he might die. Well as you can imagine, he was inconsolable. When he had finished sobbing he managed to ask a few questions. The first was “Who will play robot rage with me?” the second was “Who will be my daddy then?” and the third was “Who will answer all my questions”.

It was the hardest thing we have ever done but it also relieved us of a pressure that has been building up for so long. The pressure of guilt and fear that if we talked about ‘arrangements’ it would mean we had given up on each other, that we were accepting a certain fate. But by talking about the most hurtful things they seem to be less frightening. Shit we all know that talk is good, it demystifies and deconstructs the dark side of life. It doesn’t breach the yawning chasm that I have for a heart when I think of a life without Paul but it means we are still doing things as a team. Cass needed to hear from us both that the worst might happen but that he would still be safe. We could all learn a lot from how a 5 year old takes the news that his daddy might die. He’s has been amazing. I know that if it does happen there will be other things to face but at least we have been truthful and honest with him and maybe that will somehow help to heal the wounds should the worst happen.

He has started a new round of chemo and I urge you all to have your blind faith, to chant to pray, to will the odds to fall on our side. This is what we want. I believe in miracles, I know you do too. His odds are about the same as winning the euro millions but someone ends up a trillionaire – why can’t it be him…….

For the love of love…..for the love of life….

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