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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 5: How Sheila’s Oncologist Explained His Over-Dosing at Our Next Meeting

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Simply put: he couldn’t, or more accurately, wouldn’t. He had my letter with him, with the lab report stapled to the back of it. He said he hadn’t carried out the test so he wasn’t able to recognise it and even if he did recognise it, it didn’t fit in with what he was allowed to do; it didn’t fit his “pathway”, he said. OMG, I thought - that was the whole point of getting the test done ourselves; he had already refused to do it and here we are offering him direct proof that he was mis-dosing my wife that he didn’t normally have and he was refusing to even recognise it, let alone act upon it!  I thought the top of my head was about to come off! Let me at him! As I opened my mouth to give him the benefit of my thoughts, he held up his hand and said “there are, of course, a number of other reasons I could use to reduce the dose”. At that point, I thought I should shut up and listen. He said that if Sheila’s side effects were bad enough, he could reduce the dose,...
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PART 6: A Letter to the Chief Exec

You will remember from reading Part 5 of our story, that Sheila had wanted to try for another two cycles of Oxaliplatin, but in the event, the neuropathy from the sixth round of chemotherapy didn’t disappear before the seventh round was due, so we all decided that 6 cycles of Oxaliplatin was enough for Sheila after all. With regards to the 5-FU, even though we had reached a deal with Sheila’s oncologist that had given him a way out from recognising our result that showed he was over-dosing her, something just didn’t feel right about the accommodation we had reached with him. We shouldn’t have to avoid the issue and do a deal with him; he should be providing dose monitoring and adjustment as part of the chemo he was giving Sheila. This just wasn’t right. Thinking it over, I realised that perhaps I was aiming my concerns at the wrong audience. Maybe clinical oncologists don’t have the authority to change what they do, even if they wanted to. I decided to take the issue ...
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