PART 1: The Early Signs

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 grace and composure.

In 2015, Sheila reported to the professor’s specialist team with worsening symptoms and she was prescribed a bile sequestrant, Colesevelam, to see if it would help control the gel-like motions she was passing all the time. It didn’t. Instead, things got steadily worse - all the time, being put down to IBS by that team.

In the autumn of 2016, the professor wrote to Sheila, telling her that he was retiring and there was nothing more he or his team could do for her. She was left without an answer; adrift and confused.

Throughout 2017, Sheila continued to take her Colesevelam through ever worsening symptoms. By April of 2018, she was so fed up that she reported back to her doctor to see if she could be referred for more tests for her IBS because it was becoming debilitating.

Through a fast track referral from her doctor, Sheila received an MRI scan, CAT scan, and two colonoscopies – all inside the month of May. The terms each doctor used after each step became more and more alarming. First it was “ hmm, I think I might feel something up there”. Then “it’s a significant polyp”, to “it’s a tumour”, to “it’s a carpet mass”, all in rapid succession.

Ultimately, May of 2018 was a pretty scary month for us. Then the worse news came. At the beginning of June, we received a diagnosis that a villous adenoma had grown and it had likely become malignant.

There was a “but” at this juncture though. The “but” was that none of the biopsies taken during the colonoscopies showed any malignancy although the MRI showed that a part of the adenoma looked to have breached the bowel. As far as Sheila’s surgeon was concerned, there was only one thing that could do that and that was cancer. Either way, she said, the tumour was about six inches long and had to be removed.

We were devastated, left reeling. This had gone from IBS to cancer in the space of a month. Everybody knows the dreadful statistics of the likelihood of getting cancer at some point in their lives and yet, it’s always something that happens to someone else. Now it was a reality, for us.

Because Sheila’s surgeon believed it to be cancer, she asked an oncologist to get involved and they could take a multidisciplinary team decision about the next steps. When we saw the oncologist, he told us that even though there was no proof positive that the adenoma was malignant, some neoadjuvant radiotherapy and chemotherapy would be given before the tumour would be removed. He then suggested Sheila should have an ileostomy first to improve her quality of life, because radiotherapy and chemotherapy would make her diarrhoea even worse.

So, I asked him the following question: since Sheila’s surgeon had told us the tumour had to come out, cancerous or not, why not just cut it out now and be done with it? He told us that they needed to shrink any cancerous part of the tumour and grow normal cells over it so it could be safely removed. I pointed out that they didn’t even know there was any cancer there anyway. However, we went away from that meeting with a plan that on 21 June, Sheila would have an ileostomy and by the beginning of August, she would begin radiotherapy and chemotherapy followed by a wait period. After that, they would check to see if the tumour had shrunk and then, all being well, she would have a low anterior resection in November. As we left though, the oncologist did say that since I had asked my question, he would arrange to hold another multidiscipline team meeting to review Sheila’s results again.

Just as we were getting our heads round that plan, Sheila got a call from her surgeon to say that she was postponing her ileostomy and that she should go and see her. “Oh well it is the NHS and there must be some other poor soul who needs an operation more than Sheila” I told myself. “Her surgeon wants to apologise for having to postpone her operation and to assure us that it wouldn’t affect her prognosis”. I said I would go again with Sheila to that next meeting to fight her corner. I wanted to make sure that her surgeon understood we needed Sheila to get on with the plan right away, before the tumour grew any bigger.