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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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An Evidence Base in Support of the Need for Improved Clinical Practice in the Administration of 5-FU Chemotherapy Regimens

Some time ago, I said I would tell you all why I think what I do about the way 5-FU chemotherapy is given and why I think it is so wrong. It has taken a while for me to compile all the evidence I have found to support what I think, into one place, because there is a lot of it. It's a long spreadsheet, but I have extracted the key points from each paper I have found and read. I have highlighted the important parts of those key points, to make it as easy as possible for you to understand what so many people are saying - over and over again. The simple and clear messages are easy to understand - BSA dosing used on its own, as it is, is not rational and has no clinical rigour behind it, Therapeutic Drug Monitoring (TDM) has been shown time and time again, to improve patient outcomes, whilst minimising toxicity as far as is possible and there are cost effective methods and equipment available to provide TDM for everyone. Oncologists may tell you that BSA dosing is all they'v
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PART 10: More Awkward Questions Asked

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Since Part 8, I haven't been idle and have had mixed success so far. There is still more to be done. In Part 8, I showed you an email I had sent to NICE asking them about what progress they had made on one particular test that shows potential for introducing Therapeutic Drug Monitoring into clinical oncology and was waiting for their response, which I eventually received. I was rather discontented with their response, even though they do seem to have spent time on their answer. So, after properly considering it, I emailed them again - with some more awkward questions. On 22 May, they eventually got back to me to say that they are now considering my latest questions and will get back to me in due course, which I expect to be another couple of months because they are apparently swamped with enquiries. Perhaps one might suggest if they did their job properly, they wouldn't have so many queries to answer, but who am I? LOL. I also showed you a response to my
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IATDMCT Paper

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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
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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
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PART 7: A Reply from the Chief Exec

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You'll remember from reading Part 6, that I wasn't happy avoiding the issues I had discovered regarding the use of BSA calculation without TDM and so I decided to write to the Chief Exec of The Christie. The Chief Exec eventually sent his reply to my letters and a very carefully crafted reply it is too. I would have been proud of it myself, had I written it! It is a perfect lesson in how to look as if you are saying something meaningful, when you aren’t. It is a lesson in how to look like you are addressing the points made, but aren’t. It’s a wonderful piece of obfuscation! Well done Mr Spencer, you are a Jedi Master of avoidance LOL! You can read his response below, with my comments about his responses, in red: So, to date, no one at The Christie is prepared to fully or directly answer my questions. Should I assume that is because they think I am talking rubbish and don't want to tell me that for fear of offending me, or is it because I have hit a n
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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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A SHORT STORY

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I thought I'd share a more lighthearted view of our journey to date this week as well, but you should follow this week's blog first, so this makes sense to you. When Sheila first had her operation last July, we needed to keep our family and friends informed of her progress and to let them all communicate with her easily because they are scattered around the world, so we set up a Facebook group called Paloma the Stoma where I first shared this little story: A Short Story The husband of a cancer patient found out how chemotherapy is given in the UK. He found out that the dose is worked out before treatment starts, in a very old fashioned way that’s not really great. He then found out what a teeny-tiny therapeutic range chemotherapy drugs have. Too little  and they do no good, in fact, it’s worse than that, too little and not only do they do no good, they positively increase the chance of your cancer coming back and still make you feel bad anyway. Too muc
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