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So on Saturday 27^th of September we held a party celebrating another year and our silver wedding anniversary. (There'll surely be some pics up soon? )

I've rarely had a happier, more joyous evening. In fact it was one of those things that a good two days afterwards I was still beaming with contentment, pride and (I'm very sorry if I forgot to invite you, or you were too far away) but 90 of us bopped, ate and drank and just celebrated being alive. Our children did us proud with a highly entertaining presentation which - we are fairly sure - showed their affection as they laughed with us, not at us and our 25 years together. There were mercifully few other speeches but you could feel the love in the room - it was that tangible! The whole thing reinforced the philosophy we live by: a well-lived life albeit too short, is about strong relationships, mutual support, caring for each other and nothing to do with materialism or the silly targets we set ourselves to chase every day. It was deeply humbling and flattering to have the people we love and respect tell us how much they love and respect us. Life is beautiful!

Since when we have had more friends and family venturing forward to express their love and respect - I wish I had learned and practised that long before. I believe in it: that you change your intent of the way you react to events "stuff out there" in a blink of an eye, but it takes longer to change a habit. This thinking became clear to me on many occasions since we married, and I clearly remember "sampling the atmosphere" at our wedding, at the births f or children, and loving it, but again, a few more samples would have further cemented that wonderful taste. Aaahhhh.

This blogging session will be in three sections - different postings, really - Oh, you've just had one really:

The gently-break it to me medical info, coming up now, then finally. And then because I know a lot of you you like it and like detailed, specific, no-holds barred info, unvarnished info The hardcore medical info:

The gently-break it to me medical info, you probably need to hear no more:

Towards the end of September, I had a CT scan before the end of cycle 2 of the trial drug (6 weeks in) which showed such fast progression that the drug trial was clearly not helping, in fact it might be contributing to fast growth of my tumours, and so had to stop. The alternatives were three: further phase 1 trials, palliative care or more chemo. The consultant immediately started to discuss alternative chemo, which surprised me. I thought we'd be discussing if chemo would be an option rather than which type/cocktail. So we paused and considered if I was actually not well enough to go on another trial drug, that palliative care was always an option, so realistically what would the benefits be of chemo? The consultant said he had fair confidence that there'd be some short-medium term benefits, albeit at a cost of full on-chemo: hair loss, sickness, infections etc, etc. We agree to take a week to think about it and allow some time to see if my bloods/lethargy perked up. I had mixed feelings about the chemo, prior to the meeting with Professor Judson I had resigned myself to "short months / long weeks" of quality of life but was open to the chemo and the Professor has a very good understanding of my desire for quality over quantity of life. Note how this is all my decision - guided by my consultant's extraordinary knowledge and wisdom and his reading of my understanding of the science. In the event the decision kind of made itself as 1 week later my bloods hadn't improved and we all agreed my body couldn't handle another course of chemo without a disproportionate cost to my quality of life. I was outside the protocols of any presently open Phase 1 drug trial: I wasn't well enough to be a candidate to enter on to a new trial. The quality / quantity of life argument was over. The decision was no treatment aimed at curative intent on halting progression. It was to be as comfortable as possible in the remaining weeks or months of life

The hardcore medical info:

So what is palliative care? And for how long? It means symptom relief only, no attempt at cure or even halting progression of the disease. In relation to me this means pain control, learning to keep a baseline of painkillers in my system rather than letting pain take hold and then reacting. Many of you will have heard of Macmillan and their wonderful nurses, and palliative care is what they are so famous for! I am under the care of a Macmillan nurse based in Enfield who is quite frankly marvellous, she tells GPs and even folk at the Marsden to jump, and they say "how high!" Drugs are with us the same day as she prescribes them and she's always checking up on us. The only thing she couldn't do was give me a one-off, high dose, zap of radiotherapy to kill of some nerve endings inside my body. The Marsden could. I had two zaps, one in my left shoulder (a pain problem area) and one on my vertebrae which had been responsible for sending a band of nerve pain around my abdomen. They said it may help, it may not, but even a week later I became convinced it had worked and my pain control was much improved. I've talked about this concept of pain control, ideally there would be no pain because there are sufficient drugs available and long term side effects are not a concern at this stage of the game and we are as close as we can be. I've had to adjust to anticipating pain and taking the appropriate drugs where as before I would wait for pain to take hold before acting. So please don't worry, I'm not writhing around in pain as you may imagine and there are great drugs out there and I have finally adapted myself to pre-empt the pain and rather than the old "brave and stick it out".

Another symptom that needed controlling was fluid retention / build up. In the past few weeks my stomach had become acutely distended: very swollen and pulled tight at the skin. Also, a charming pair of swollen ankles. Last Wednesday, I came back from having my tummy tapped by way of a tube inserted into my stomach and getting that fluid out! I'm pleased to say that my stomach isn't so swollen as around 3 litres of fluid has been drained, plus a further 2-3 litres subsequentlly) and I feel a lot more comfortable for it. So, a bit of a mix bag of a message (and long overdue) but really when people say it's the quality not the quantity, it really is true.

I'm not sure my contentment will truly come across in this blog, but I really am very serene, very happy with life, being surrounded by those who love and care for me. I'm very much lucid and enjoying open conversations with my loved ones about their futures and reminiscing about all the fantastic times we've had together.

Life IS beautiful, and life is for living, so never stop carpe-ing!

Paul