Exposing Oncology

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

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

I n June of 2018, we received the diagnosis that my wife had grown a villous adenoma tumour.  Her ileostomy operation had been postponed, so I promised I would be present at her next appointment with her surgeon. That next appointment turned out to be about something entirely different than we expected. Sheila’s surgeon told us that at her team’s further multidisciplinary meeting, they had looked at the scans again very carefully and decided that they could remove the tumour safely after all - and do it now. This was exactly what we had hoped for ever since I asked the oncologist about the possibility of swift removal. We like Sheila’s surgeon, she is straightforward and answers questions honestly and in plenty enough detail to satisfy our curiosity, whilst instilling in us, a great deal of confidence in her. I can’t say I’ve found this with oncologists. So now we had a new plan. We were delighted and left with big grins on our faces, skipping down the corridor. But now we had to

Where to begin? My wife Sheila, has had issues with her bowel for over ten years. It really first became an issue in 2009 when we were on vacation in a remote camp inside 6500 square miles of nothingness on the Skeleton Coast of Namibia. We had nothing that would help relieve the discomfort there, but she was able to get Mebeverine from a pharmacist once we reached South Africa, which settled her stomach - at least for a little while. Once we got home, Sheila reported in to the doctor who ran multiple tests. The tests suggested a lactose intolerance but nothing much more. She was then sent for a colonoscopy that showed a nice clear and healthy bowel. After that she was sent to see the UK’s leading specialist professor in the field, who diagnosed her with IBS and took her into his care. He tried various drug combinations and hypnotherapy over the years to try to alleviate her symptoms, however, nothing really helped. Sheila soldiered on, coping with her symptoms every day with gr