Decision made
For those readers who are not receiving my email updates (and you are welcome to ask to be included), the news is that I have decided not to take the surgical option. I might as well cut and paste the reasons for this decision from the latest update:
This morning, as planned, I saw my surgeon, Matthew Clark, to make a decision on my treatment from now on, the two options being palliative de-bulking surgery, or simple palliative care. I have chosen not to go through with the surgery. Over three years I have developed a warm, strong and trusting relationship with Matthew. I know he is widely respected as a Professor of General Surgery and as a leading sarcoma expert in this country. Three years ago, he was one of two surgeons who took a risk and saved my life when other specialists were saying it was too dangerous. In the end it came down to a question of trust: the professional who has carefully looked after for me for this long tells me he can technically perform the operation, but believes it is not in my best interest. In his opinion, my chances of maintaining some ongoing quality of life are better served by not undergoing further gruelling and dangerous surgery. I decided to trust his opinion. I have already been through this surgery twice. If there were a strong chance of prolonging my life for a good length of time, I would gladly do so for a third time. But having reflected, I am not willing to put myself through that much pain and sheer misery when the outcome is so uncertain. As so many of you have commented, this has been an awful, lose-lose decision to make; it is really hard to come to terms with this new reality, both for us and for the family and friends. We long to cling to shreds of hope, and as they disappear, one by one, the experience is devastating. At the same time we are so grateful to be surrounded by so many caring friends who are willing to enter the pain and weep with us - once again.
To that report, let me add a further factor in the decision, which goes back to Becky's death 14 years ago. She had had two major operations in late 2002, followed by radiotherapy. This gave her a window of several months where she was in a reasonable state of health, certainly enough to get some real enjoyment out of life. Unfortunately this window had shut by the beginning of May 2003, when ominous signs of tumour re-growth appeared.
One night it looked like she was approaching the end, and I think we were ready for that. However, the oncologists decided to give her a massive dose of Dexamethasone, and this brought her back from the brink. At this point the neurosurgeons offered a third de-bulking operation on her brain tumour. Linda and I were inclined to say no, since no further long-term treatment was available. Then we realised that the decision was not ours, and we put it to Becky herself, who was keen to go ahead. She had the operation, but it didn't really give her much: one extra month of life during which time she slowly faded into unconsciousness. Looking back, I think it was probably the wrong thing to do, and it would have been better to spare her the trauma of the operation.
So yes, those memories were in my mind as I thought of my own prospects. Better to hold on to the quality I have now, such as it is, rather than to surrender it for an operation which could well weaken me further. Let me quote from an email I received today, and which says it better than I can:
Your earlier blog post about the idiocy of describing dealing with serious illness as a battle to be won and lost - and the implication with it that those who don't try every stratagem in the process are losers - was spot on. It occurs to me that when we do so characterise things, we also run the risk of being fixated on life in the abstract, rather than life in the concrete (which necessarily includes death) - that chasing after the rainbow of more, better, other cures might diminish our ability to appreciate life as it is.
It is precisely this "chasing the rainbow" that I want to avoid. In another email from today, the writer says:
Like you, I have watched and supported many to that departing point and noted there are those who have fought and held too tightly to a fragment of life.
And another friend has commented that a family member, dying of cancer, was so fixated on surviving at any cost that she ended up excluding and alienating those who wanted to support her.
As the famous passage in the Book of Proverbs tells us, there is a time for everything, a time to live and a time to die. I wish with everything I am that this was not happening to me, but I am not afraid to face death, and I think there is a sort of inner peace that comes through acceptance rather than anger and terror.
In the meantime, there is a fridge full of good French cheese and wine, there are wonderful friends, I am still alive to eat, drink and be merry. And that is the plan from now on.
Cheers!
PS. I have noticed when looking at the blog that there are occasional glitches - difficulties navigating from one post to another. Is anyone else having trouble like this? It looks like you sometimes have to reload the whole blog page to get where you want to go. Sorry about this.
