One year on from GIST surgery: (2) Surgery

(Continuing from a previous post, here)

It came as a shock to me that the shrinkage had stopped. I am by nature an optimist, and after the early good response to medication, I rather assumed that this would continue indefinitely. It also didn’t help, the way the news was broken to me. Instead of being told so by a doctor in consultation, I had a phone call from the specialist nurse, who told me that the medication had “stopped working”, and that the surgeon had booked me in for a given date in September 2014. She said I should stop taking the medication In preparation for surgery, and she was booking appointments for some preparatory sessions.

I had several objections to this. The timing was awkward (I was due to be in Rome for a conference at the end of September), but more importantly, I objected strongly to such decisions being taken without any consultation. At this point for the first time, I thought seriously it might be wise finally to transfer to a specialist GIST centre. I’d been happy enough with RSCH as long as the treatment was fairly routine, and primarily about monitoring progress – but when it came to decisions about actual surgery, I wanted much more information. I wanted a second opinion. I told RSCH so, and prompted by a suggestion from Michael Sayers in our listserve group, arranged one with Dr Beatrice Seddon at University College Hospital, London.

When I met her, I was totally impressed at the thoroughness of her preparation for the meeting, how carefully she listened to my story and concerns, and the clarity and detail of her responses. I learned that it was not true that the medication had “stopped working”. It was no longer shrinking the tumour, but would still be effective in preventing regrowth. It was therefore a mistake to have stopped taking it, and I was told to resume. Based on the CT scans to date, she had called for a surgical opinion. This confirmed what I’d been told early on, that surgery would likely include removal of all or most of the stomach – and possibly also part of the pancreas and spleen.  The really difficult, delicate decision I was trying to resolve, was whether it would be wise to stay with RSCH for surgery – or should I transfer for ongoing treatment, and surgery, to a real specialist unit? My conclusion was that given the size of the tumour, at 15cm and therefore classified as still “large”, I wanted a specialist. Based on my very favourable experience of meeting her initially just for a second opinion, I then requested a formal transfer to her care. Ever since, I’ve been very pleased that I did.

One of the first things we did, was discuss a date for surgery. Unlike RSCH, she did not feel that this was urgent, provided we did not delay too long. Because it suited my schedule, we agreed on timing for some time around February. In the meantime, I would continue with 3-monthly consultations and scans. As the time approached, she called for a fuller surgical opinion, which again stated that I faced losing my stomach, pancreas and spleen – and also possibly part of the liver and diaphragm. Each surgical opinion seemed to be getting more dire!

By the time that the date came around, nearly eighteen months after I was first told that I would face such major surgery, I’d had ample time to get used to the idea. I was at least, resigned to the prospect. I checked into the Royal Free early on Tuesday 9th February. After some preliminary discussions with assorted staff, I was wheeled through for anaesthetic – and came to some hours later, thinking that if this was what it’s like without a stomach, it wasn’t any different to before. Apart from the discomfort of assorted tubes and cables hooked up to me, I was not in any particular pain – nor did I experience too much, throughout my stay in hospital.

I was in intensive care for short while. At some stage while there, I had a visit from one of my surgeons, who gave me the good news that they had taken out the stomach and spleen as expected – but nothing more. My memories of this time are blurred – one of the odder features of this recall, as that in my mind’s eye, during this discussion with the surgeon we were sitting in deck chairs on a bright green lawn: definitely not the case. After a short stay in IC, I was moved to a high – density ward instead. One of the first visits I had, was from a pain nurse, who told me not to hesitate to push the pain button whenever I wanted to, which would release pain medication from a store I was hooked up to. I’d also been advised on our listserve group, not to wait for pain to kick in before pressing the button, but to do so pre-emptively. There’s another reason this pain medication was useful. When I first used it, I experienced a strange, floating sensation. When I mentioned this to my surgeon on his second visit, he pointed out that as it is an opioid, its effects are hallucinogenic and soporific as well as just in pain relief. The “soporific” was what interested me. Apart from the discomfort of being stuck in bed with so many tubes and cables, my biggest problem was getting enough sleep at night, when we were constantly interrupted for blood pressure readings, medication and the like. I made a point, after nocturnal disturbance, to give myself a good dose of the pain medication – which quickly put me back to sleep. Just in case I was overdoing things, I checked with the pain nurse. He assured me that I was doing fine. It’s not possible to give oneself too much – the mechanism won’t allow it. He was also able to check a record of what I’d been dosing, and that turned out to be just about exactly what was recommended.

My only other continuing gripe was a permanent problem with dry mouth. I’d been expecting to have no solid food for a while after surgery, but what I was not expecting was that I’d also not be allowed anything to drink – nil by mouth. Initially, all I could get was a wet sponge to wet my lips. Later, I was allowed to take a sip of water, but had to spit it out without swallowing. I had to endure this nil by mouth routine for almost a week. When the day finally came that I was permitted something to drink, I was surprised to find that at the same time, I was allowed to eat “soft” food. Based on my reading and advice on our listserve group on life after gastrectomy, I’d expected to start out on a liquid diet, followed by smoothie type soft foods, semi-solids and then a very gradual return to proper solids. I was surprised to find on the lunch menu I was given, that the soft foods choices were far more solid than I’d expected – including a tuna/pasta bake, a bean casserole, and lasagne, which were three of my choices for two lunches and dinner.

For the first few days, I’d been confined entirely to bed, but soon enough physiotherapists began to call, helping to take short walks around the ward (with assorted tubes hooked up to a stand on wheels), and gave me a few exercises to do in bed. A week after admission, I finally had the tubes removed. Freed of all encumbrances, I found that I was able to walk easily enough around the ward, and more. The great joy at this point, was the ability to get to the toilet myself and take a proper shower.

Finally, late on Friday afternoon eight days after admission, I was discharged and was taken home, to a quiet bed without constant disturbance from nurses and other patients.

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