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Showing posts from April, 2019

PART 9: A Side Story

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Last time, I promised you a side story. In Part 1: The Early Signs, I mentioned that Sheila had been under the care of the country's leading IBS specialist for several years. Before Christmas last year, I wrote to his team to ask whether they considered Sheila's symptoms at the time could have been caused by a villous adenoma, rather than by her IBS, just to close off those niggling concerns. Here's what I wrote: Six weeks later, I got a response: Now, whilst we would take issue with exactly how stable Sheila was and how that related to how bad she was when she first presented to the professor, we do think he has responded better to my questions than The Christie ever has. At least, whilst taking no blame (OBVS), he hasn't just stuck his fingers in his ears and gone la-la-la, go away. We hope that lessons learnt from Sheila's case will mean less chance of IBS sufferers under his team, having their symptoms being taken as IBS without greater

PART 8: Up to Date

So, on 31 Jan 2019, Sheila completed her recommended chemotherapy and rang that bell. Happy days! On that same day, having had my unsatisfactory reply from Mr Spencer, the Chief Exec of The Christie, I asked the PALS team for a meeting to discuss that response and I'm still waiting for that meeting. Perhaps they are hoping that I'll just go away and they won't have to sit with me and explain why they continue to avoid answering my awkward questions. I'm not going away though. Today, I have been back in touch with The Christie and reminded them that I asked for a meeting... Sheila got the "all clear" (but maybe, not quite - still a question to be answered on that) from The Christie in the middle of February and is now 2 months post chemo, slowly recovering from that onslaught. She still sleeps a lot, suffers from neuropathy with tingly, cold feet and hands and now, chemo induced osteoporosis in her spine (nobody mentioned that as a side effect!), a wo