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 for it. But he was sure nevertheless that Sheila was getting the right treatment.

I asked him if he was confident he was giving Sheila the right dose of the right treatment and suggested that he was avoiding answering the question. He got quite annoyed at that point and said he wasn’t. So I asked him again and he said that nobody asks for more chemotherapy and that it didn’t matter if we saw him privately or went anywhere else in the world, the answer would be the same - dose monitoring and adjustment is not what they do. I asked him one last time and he said again that Sheila was getting the right treatment.

At this point I shut up because I didn’t want Sheila to be worried that she wasn’t getting the best treatment she could get, but was disappointed that a second oncologist, particularly one who had been involved in the research into the need for dose monitoring and who had earlier in the year shown that he could change his mind and do what’s best, was also intransigent about providing dose monitoring at one of the UK’s best cancer centres. Refusing to check they have a correctly calculated the dose of chemotherapy for an individual when it can be done, seems to fly in the face of common logic to me.

We went home and Sheila continued her chemo as calculated by BSA, but the issue kept niggling away at me. What if she was being under-dosed? That’s a really bad place to be and without dose monitoring, around 65% of people are under-dosed with 5-FU unknowingly. Some papers put it even higher!

Although I hid my concerns from Sheila, I was becoming more and more upset with the whole situation to the point where I was regularly crying about it when I was alone and sometimes, friends concerns, when Sheila wasn’t there, could set me off too. I just knew I had to do something about it. I couldn’t not; I’d never live with myself if I knew I had not done the very best for my wife with whom I want to spend the rest of my life. Clearly, from the papers I had read, tests are available; I just had to find out what they were, find someone who could do them, and how I was going to arrange it. So, without Sheila knowing what I was doing, that’s what I set about doing. This brought me to a company called Saladax, who have a test and were mentioned in several of the papers I had been reading.

I contacted Saladax’s Head of Commercialisation, a man named DeWayne over the course of a couple of weeks. Through Dewayne’s empathy and direct help, combined with a lot of leg work and persistence myself, I was able to get a blood draw kit from Saladax that would allow me – on my own - to get a test done to determine if Sheila was receiving the proper dose of 5-FU. More on the help I got from Saladax in Part 4. Once I was confident that I could actually really achieve this, I admitted to Sheila how upset I was and asked her if she would allow us to get a blood sample taken from her and get it analysed, which she agreed to. I love that girl!

We would know whether Sheila was being mis-dosed or not. It was now November and we were ready to move beyond all this doubt, confusion and frustration. Shortly we would finally have answers, although I didn’t know what we would do if we found out she was being under-dosed - panic perhaps?!