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Part 11: Life Beyond Cancer

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Part 8 was the last time that I told you about Sheila, who this is all about really, so here’s how things have gone for her and I since then. At the end of Part 8, Sheila was still recovering from 6 months of chemotherapy and we were dealing with the sadness of her mother’s death and were looking towards her ileostomy reversal. We held Sheila’s mum’s funeral on a fine spring day towards the end of April, at a lovely crematorium, surrounded by countryside. It couldn’t have been nicer (if these things can be nice!) and all arranged by Sheila. She did a good job. At the beginning of May, her ileostomy was reversed; something we were both looking forward to and at the same time, not looking forward to. We knew her bowel would have to learn how to cope on its own and her bottom would have to be trained again. We also knew about the potential to become a victim of LARS (Low Anterior Resection Syndrome), which can leave a person with a very badly behaved bowel and bottom for...
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PART 3: I Reached Out and Found Helping Hands

We had challenged Sheila’s oncologist about dose monitoring in August, he didn’t like it and sent us for a second opinion. In the middle of September, we were invited to a meeting to get that second opinion. It turned out to be from the first oncologist we saw back in June. We were quite pleased since he had listened to us back then and had shown that he could change his mind to do what was best. I also knew he had been involved in research into dose monitoring and was aware of the tests available. To make the best of our time with him, I set out our position in a letter for him beforehand, which he had with him at the meeting. You can read what I said by scrolling through the PDF below: He recognised everything I had said in my letter and noted the papers I had picked in my references, to which he had contributed. He told us that more research was required and how hard it was to get everyone to join in and to design a multi-arm randomised clinical trial and get the money ...
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PART 4: Discovering the Truth About Sheila’s Chemo

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It had been a long year for Sheila and I, with the shock of the diagnosis, operation, its aftermath and now the very real frustration of a lack of clarity regarding the dosing of her chemotherapy. On this issue, it felt like we were just not being listened to, never mind actually heard. Despite my best efforts to discuss dosing with her oncologists, they refused to engage on any need to check that their calculated BSA dose was actually right for her  as an individual , to make sure they were not over or under-dosing her . Every time we raised it, they, figuratively speaking, just stuck their fingers in their ears and went la-la-la-la-la. It was just infuriating me, so with help from DeWayne at Saladax, who had one of his Research Fellows send me a blood draw kit to stabilise Sheila's blood plasma at room temperature for long enough to get it to a lab for analysis easily and with his help to identify a lab that could do the test, I got on my way to doing something about it with...
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