PART 2: The Surgery and Beginning Chemotherapy

In 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 get our heads round a new plan. From the end of April to the end of June, it had been an emotional rollercoaster. We were ready for this whole thing to be over as soon as possible.

So on 5 July, Sheila underwent a 10 hour low anterior curative resection and ileostomy, spening the following 23 hours in recovery before she was stable enough to go to a ward. She stayed there for the next fortnight with her recovery stalling repeatedly. I was there with her for hours every day, keeping her company and doing what I do - asking questions! My mum used to tell me that soon after I could say mummy, my next word was why, which I combined with mummy - LOL.

Thankfully, the operation was a complete success, with good margins all round the tumour. Sheila's surgeon said though, that she hadn’t seen anything quite like it before with regards to the amount of mucous this thing kept pumping out. She said she didn’t know how Sheila had been coping with living with it.

Eventually, Sheila was allowed home and that’s when she was able to properly recover in peace and quiet with my tender ministrations. Almost as soon as we got her home though, we returned to see her surgeon, who had the histology results of Sheila’s tumour. We were both still mentally recovering from the surgery and prolonged hospital recovery time and were relieved that this thing was out of her now and couldn’t do her anymore harm. 

That’s when news turned for the worse. Her surgeon let us know that Sheila’s tumour, which was just removed was a Stage 3 tumour, 5 lymph nodes had been compromised and there had also been some vascular invasion. Because of those risk factors, she recommended adjuvant chemotherapy and it would be quite aggressive chemotherapy at that. She arranged for us to see an oncologist again to discuss the chemo the following week. Now I had more quick learning to do about something else I never wanted to know about. I wanted to be completely prepared with the right questions for the oncologist. So, I set about learning about the workings of cells and the cell cycle, what the proper categorisation was of the tumour (Stage 3C (Group 1) T4a N2a M0, it turned out), what was the likely chemotherapy regimen (FOLFOX) and how did those drugs work on the cell cycle and its DNA? By now, I had already been asked by a doctor if I had a medical background and I was thinking that this doctoring lark isn’t that hard these days - all you need is access to Google and half a brain! LOL.

This oncologist was a different one to the one we had met earlier in the year and he confirmed what I had learnt was correct and discussed my questions about whether three months of chemotherapy was as good as six months. He ultimately recommended six months, which we were happy enough to go along with because of Sheila’s risk factors.

Sheila was then taken under his wing as a patient at The Christie, one of the UK’s leading cancer centres, where she was fitted with a Portacath, which oddly, was the one thing in all of this, that made both Sheila and I the most squeamish. We were pleased to hear that she could have one though, because they are not widely used in the UK and once fitted, are the least problematic way of administering chemotherapy. The Christie has been sending their people to Norway to learn how to fit them. Having the Portacath fitted resulted in Sheila immediately getting a blood clot in her neck, delaying the start of her chemotherapy by a week. On top of all the rest of it, she has had to inject herself with a blood thinner every day, until her chemo finished. It’s a good job she is used to giving injections - she is a teacher and had a little girl with Type 1 diabetes who she has been monitoring and injecting.

During that delay, I continued looking into both Oxaliplatin and 5-FU, going straight past the scare stories, false alternative therapies and layman’s blurb that’s out there on the internet and I began to turn up some alarming information in medical reports about Body Surface Area (BSA) calculations and how they can lead to under-dosing or over-dosing of 5-FU, if not checked by measuring the concentration of 5-FU in a patient's blood plasma. The more I looked, the more I found, the more alarming it became. I found report after report saying it was true and I also found that there was a recognised clinical need to measure the dose and that there is a way of doing it, even though they don’t do it!

At the next opportunity, we asked Sheila’s oncologist about it directly. He tried to distract me from my line of questioning about the limitations of BSA calculated dosing and the need for subsequent monitoring and adjustment. He asked me what I had been reading. I had all the papers I had been reading with me (including one from NICE), all marked up with highlighter. I gave them to him to look at and I asked him if he would monitor Sheila’s dose and adjust it if necessary. 

He hardly looked at the papers I had given him before disparaging the first one, ignoring the rest and becoming quite agitated by my questions. He said BSA was all they had and dose monitoring wasn’t how things worked. He said that he didn’t feel he had our full confidence and would refer us for a second opinion. As he left and shook our hands, he couldn’t even look us in the eye. I don’t think he is used to being challenged in such a way, if at all.

At this point, Sheila had to proceed with her first cycle of chemo. I was beginning to realise that if our oncologist refused to budge on dosing methods, it was going to be necessary to take note of the dose of each drug she was getting, myself. Who knows, perhaps it could prove useful. Time would tell.