It’s now 6 weeks since my latest (and probably last) operation. My recovery has been so much better than last time.
Once more, I cannot praise enough the post op recovery staff. As at Leeds in January, the nursing staff went about their tasks with skill, professionalism and a sense of humour. The support from all the staff was exactly what is needed when people are at their most vulnerable. The Christie is much better resourced than Jimmy’s in Leeds. It’s a Foundation hospital and charity and therefore attracts additional resources. And it’s a specialist cancer hospital with all operations planned, rather than a general hospital such as Jimmy’s that has to deal with everything including emergencies (I was one of those last January). I spent the first 2 post-op nights in the high-tech Critical Care Unit, where staff did talk to me, but were more interested in the computer screen next to me that contained the real information about how I was! Unrestricted visiting hours were a real bonus, and though it’s all a bit hazy in my memory now I have a recollection of watching England v Poland there with Jane and Alex. On the ward, staff weren’t under the same stresses as at Jimmy’s and could focus on their core job rather than having also to be housing case-workers and social workers.
My recovery was aided by me being much fitter at the outset than last time and avoiding wound infections. Before the op one of the surgeons, looking at the scar tissue from the previous op, said he’d also “tidy all that up”, like a plumber looking at old pipe-work. He was true to his word: they removed all the scar tissue (and belly button!) leaving me with a much neater, though longer, scar. I was out of bed the following day and as soon as I was disconnected from the fluid drips and epidural I was pottering about the ward carrying a couple of bodily-fluid bags. As soon as these were removed (about day 5) I was on the move and wandering round the hospital. I even got out with Jane for a shuffle around leafy West Didsbury, enjoying how autumn had permeated in the week since I’d come into hospital. It was interesting being on a ward full of cancer patients, all on our own particular journeys and each carrying a range of fears and hopes – but mutually supportive and with a lot of humour! Some of the conversations reminded me of the Jeremy Hardy gag: it’s the place where you’re most likely to hear “unexpected item in bagging area”!
Most of you will know that the outcome was disappointing, though not unexpected. On the way over to Manchester I said to Jane that for me the most likely outcome was that they’d find the disease too widespread and therefore would not go ahead with the full procedure. I don’t know why I felt that way; “gut instinct” Jane said! Someone said recently that I’m now back at square 1.
Spacetime theory tells us that time dilation only occurs when an objects travel at different speeds through space. Many reading this blog will be aware that whatever Brian Cox says, time seems to go faster the older we get. But as I said in a previous blog, for me it’s as if the accelerator on life’s journey has been pressed hard to the floor, so the theory stands up: the same journey for me will take much less time. The point of all this is that square 1 seems long gone, and there’s no going back to it. To use another of my metaphors, I reached a junction and chose a particular path. It turned out not to be passable, but instead of going back, I’ve gone over a hill to seek the other path further along its road.
I have no regrets about choosing the path I did in going for the op, but it has been difficult getting back to the other path, for two reasons. First, I always feel more positive when I’m doing something. So whilst on chemo I felt I was on the case: deciding to go for the operation gave me a new focus. Now I’m awaiting another scan to see what, if anything, is visible and therefore able to be monitored to see when further chemo might be needed. (The tumours aren’t quite operating in a SMART way. They are specific, seem to be attainable and relevant, are certainly time-bound, but they fail to be measurable.)
The other psychological difference comes from my prognosis. All the doctors say it’s impossible to make accurate predictions for any cancer, let alone such a rare one. So when they said they have an expectation of 50% of people with my condition and treatment being alive in 18 months (from the beginning of my treatment) it was almost meaningless, and certainly wasn’t saying I’d 18 months to live. But it’s a timescale that lodges in the brain however much I say it’s meaningless. And we define time so much in years: so to me more than a year is like a lifetime, less than a year seems very soon! I’m therefore working hard to avoid thinking too much about this. I’m slowly getting back to how I was before the op, doing the things I want to do, enjoying life as much as possible. Jane and I spent a lovely weekend in the Lakes recently, even though the high fells were out of bounds for me. And next week I’m going with Alex to Iceland for 5 days. In between I’m seeing lots of family and friends, going to films and concerts, and despite a very heavy cold (I feel I should be given exemption from such things) I’m feeling pretty good. But I do need to remember a story told by a ward-mate at The Christie as I was making a list of the things I plan to do. He knew someone who was given a few months to live, so sold her house, cashed in everything she could cash in, and had a wonderful few months …….then lived for 10 years in poverty!