I had a phone call today from my specialist nurse at Royal Surrey, with the decision taken by the MDT (multidisciplinary team) that’s been assessing my innards, after my most recent CT scan. I’m summoned to the hospital for a Monday meeting with the senior stomach oncologist to discuss the matter, but it seems the essence of the recommendation is to proceed directly to surgery – they’ve already pencilled in a date of 30th September for the op, and an earlier date for pre-operative tests.
I’m not having it, and have told them so. I must be in Rome on the first October for the foundation conference of the Global Network of Rainbow Catholics. Somehow, I don’t think they’ll let me fly out the day after major surgery – nor do I think the NHS will cough up for a private air ambulance to Rome. It will be “major” surgery too. Even after the significant shrinkage, the tumour is still pretty big. Anything over 10cm is classified as large (and with it, usually high risk). Mine is down from the original 26 x 20 cm to “only” 18 x 15, which is still much bigger than common or garden “large”.
Because of the delicate nature of these GIST tumours, it’s essential for the surgeon to be absolutely certain that it is removed, in its entirety. I was warned right up front, that will certainly require removing part of my stomach – or even all of it. (If anyone accuses me in few months of having “no guts”, that may well be literally true”). Now, there’s a new wrinkle to consider. The original scan showed that the tumour’s massive size had displaced the spleen and pancreas, as well as the intestines (which caused the initial symptoms, presenting as pain in the bowels). Later scans showed that the spleen and pancreas were returning to their right and proper places. The latest scan report no longer uses the terminology of “displacement”, but instead refers to a tumour which “involves” these two, as well as the stomach. This could just be careless choice of words, but if not, if they mean what they appear to, then I could be about to lose the spleen and pancreas, along with my stomach. (The upside, is that if I can no longer eat, I’ll be able to lose some weight. Look out for my new svelte figure, to see in the new year).
Assuming that we do indeed proceed to surgery, some time in October, there are practical problems, beyond the obvious medical ones. There will be a significant recovery time in hospital, followed by further convalescence at home. Standard practice seems to be, that during this recovery period, I will not be able to drive (at least initially). No driving = no income, as my paid work is as a part -time delivery driver. (My real work, as some of you know, is right here, at the Queer Church and related activities in LGBT ministry).
That’s another upside to this. The Lord works in mysterious ways, and there’s always an upside. When I was first diagnosed, I found that medical advice was firmly against travel to South Africa, which I had been planning for an overdue visit to my Johannesburg daughter and family. Instead, they came North, and together with my Swiss family, we had a superb, ubermagical combined holiday, all the family together for the first time ever, in Zurich and on the shores of Lake Garda – the unexpected fringe benefit of my GIST. The fringe benefit now is simple, and affects you, my readers. If I can no longer work – why, I’ll have nothing better to do than to while away my time reading, and thinking – and writing (oh, and perhaps some sleep. Eating seems unlikely, to begin with).
I’ve been inspired and re-invigorated by your generous response to my recent “So Fund Me” appeal. I have renewed energy and focus, and can now see clearly how to deal with some questions that have been troubling me the last year and more. There’s a major restructuring in the offing – but it will take time. It now seems that in the near future – time is what I will have, in abundance.
So that’s the medium term, for which I need prayers. More urgently, I have a much simpler need, for more prayers in the short term. In writing above that the recommendation is to proceed directly to surgery, I noted that includes doing it a Royal Surrey. That just possibly may not be the right decision. My colleagues in the GIST support group are clear in their view that as this is an extremely rare condition, it needs to be treated by a real specialist in the field. The people at Royal Surrey have suitable experience, but are not GIST specialists. I’ve been happy with their treatment so far, which is geographically convenient, and as far as GISTs go, has been pretty well text book and routine. But we are now into new territory, which will certainly not be “routine”.
Here’s the short term challenge, for which immediate prayers, please: at my meeting on Monday, I need to ask some seriously probing, intelligent questions. I need to get these right – and also find a balance, between insisting on treatment with a recognized expert – or settle for what seems to be a recommendation from the MDT (which included input from the real experts at Royal Marsden).
That’s another reason for delaying beyond September 30th, in addition to the conflict with Rome. The decisions required are important and complex. I will not take any, until the issues are clear in my own head.
Fun times, coming soon.