Angela Rygol, South Gloucestershire
My husband, Michael, was diagnosed with stage 4 bowel cancer in March 2022, just a few months after retiring, with almost no symptoms. His journey has been a rollercoaster since then.
An inoperable 6cm tumour was discovered in Michael’s splenic flexure (top corner of the colon) and, to top it off, the cancer had spread to his liver and peritoneum. A generally healthy, fun-loving, adventurous and active 56-year-old, there were no early symptoms, other than a change in bowel habits around November 2021. Up until then we had led what Michael likes to call a ‘charmed life’; successful careers, three wonderful and now grown-up children between us, a gorgeous beagle and an active, happy life. We had also, after 13 years together, got married in September 2019 which was the beginning of another beautiful chapter in our lives. Having both been married before we had always been committed to living happy and full lives and treasuring each other and our time together.
I remember the day Michael told me about his change in bowel habits quite vividly. We were out walking in Wales, a place we had grown to love over many years of hiking all over and conquering a list of 98 peaks in the Brecon Beacons. It was a crisp but sunny day in late November when he tentatively mentioned his concern and, whilst he didn’t think anything was wrong, he wanted me to know. I insisted that he give our GP a call and schedule a check-up and spent the next few weeks nagging him to do so. Christmas came and went in the usual blur of parties and festivities, and he eventually saw the GP in February, who organised a series of tests and scheduled a colonoscopy for 6 March 2022.
On the day of the colonoscopy, I waited for him while they carried out the procedure and was then called to fetch him. One of the nurses showed me into a room and asked me to wait. Above the door as I went in, were the words ‘Quiet Room’ and I sat down at a table with a box of tissues placed in the centre. I suddenly felt anxious. Michael came through followed by the consultant who told us quite calmly that the colonoscopy had not been a complete success as they were unable to go all the way through due to an obstruction. They had tried to take a biopsy but were not convinced it was successful. When we asked what that all meant and what it might be, the dreaded ‘C’ word entered our lives forever. From there it was a whirlwind of appointments, tests, and a lot of tears whilst waiting for a full diagnosis.
Later in March, Michael went into hospital with the plan to have a stent fitted following discussions with the colorectal multi-disciplinary team (MDT) after experiencing bowel discomfort. Instead, a CT scan revealed a micro perforation in the colon, an infection along with liver metastases. The surgical consultant (to whom we now jokingly refer as the ‘grim reaper’) told us, quite brusquely, that the tumour was inoperable and the route forward would be to try what they could to hopefully give Michael ‘a few more years’, which would probably entail chemotherapy. This was the second blow which completely knocked us sideways. I left Michael at the hospital that day for a liver biopsy and drove home in an absolute daze, sobbing all the way. I even woke the next morning in tears. I’m not sure I’ve ever completely come out of that daze. In April, we were dealt the third blow when we met with another of the oncology consultants to discuss liver biopsy results and treatment. He confirmed that the bowel tumour was inoperable, and that seven eighths of the liver showed evidence of metastases along with cancer in the peritoneum. He also confirmed that the cancer was incurable, and they would offer palliative chemotherapy. We both broke down in front of him, absolutely stunned. This was something that happened to other people, not to us. Telling our children and family was incredibly difficult, it felt like we were reliving the pain each time we talked about it and all I could think about was all the special times that Michael would miss out on and how I would never be ready to lose him. It seemed so horribly unfair that a good man who had worked so hard for 30 years to give his family the best he could had been dealt this hand. But cancer, as we’ve discovered, is anything but fair.
We stumbled through the next few months; Capox IV chemotherapy and Capecitabine orals started in April along with numerous additional overnight trips to A&E (what Michael referred to as his ‘city breaks’) due to a biliary duct infection and then, later, a blocked bowel which probably nearly killed him, in mid-June. I had become accustomed to watching Michael closely, monitoring what he was eating (he was on a very strict low residue diet), making sure he was taking his medication, asking repeatedly if he felt okay, even waking up in the middle of the night to check he was still breathing. I continued to work full-time (blessed with a very understanding employer) and juggled everything as best I could with the help of family and friends who assisted where and how they could, sometimes at a moment’s notice. We are also fortunate to have friends and two close family members who work in the medical profession who’ve been able to shed more light on some of the results and data from the hospital medical teams.
The infections and unexpected trips to A&E have probably been the hardest times so far. Watching Michael in absolute agony (at times he could not even talk to the 24-hour acute line to explain his symptoms because of the pain) without being able to do anything brings a sense of helplessness that is debilitating. Driving like a complete maniac in the early hours of the morning to get him to A&E with a serious infection, calling 999 to get an ambulance when I couldn’t get him in the car myself, hours and hours of waiting, being shuffled from one bed to another, waiting for pain relief, results, CT scans, bloods and more. Working through the rabbit’s warren of terminology and hours spent reading up on treatments, chemo, prognosis and any other glimmer of hope I could cling to was all I could do to feel vaguely useful, alongside doing my best to physically and emotionally care for Michael but being cautious not to strip him of what was left of his own sense of self-worth. It felt like I was living on a knife-edge, every minute of every day. It was only when July came that we could finally come up for air. By then he was into his fourth cycle of chemo, which he has tolerated well so far, and was having weeks of feeling quite good with renewed energy and appetite. Peripheral neuropathy has been his only major symptom (extreme tingles in the mouth, hands and throat when encountering cold). A cold beer requires a glove and careful drinking as we have discovered! It felt like the old Michael was coming back and for this I was very grateful.
Cancer is one of the great levellers. It has taught me to cherish the good days and push on through the bad. It has brought out inner reserves of strength that we didn’t know we had. It has cemented our love for one another and brought us closer than we could ever have imagined, with a very deep trust between us. It has taught me what unconditional love really means. It has made us laugh and made us cry. It has made us angry, sad, desperate. But it has also taught us to hope and to believe in the medical science that forms the backbone of his treatment and care.
Through this journey I discovered Bowel Cancer UK and the carers’ forum on Facebook. This has been a wonderful outlet for me as has learning to reserve my tears for the shower and pick up my running again to blow away the cobwebs and re-energise. Sharing the ups and downs with others going through similar has been invaluable and one of the things it teaches you is to embrace hope. A journey through cancer is a very personal one with an exorbitantly priced ticket. You simply don’t know how things will turn out and therefore hope is an essential tool to carry with you. We spent many evenings over the years discussing post-retirement and our plans for the next twenty years; travel, new hobbies etc. Michael would always say “I’m so looking forward to spending the next 20 years with you”. We’d guessed we’d have ten great years plus another ten good years. Now, we’re not sure it will be either.
What’s difficult is the big unknown and unpredictability. We are always told ‘everyone is different’ and ‘people respond differently to treatment’ etc. We just don’t know the outcome nor the timescale. That is hard to deal with. But we are living with hope, following the medical guidance and equipping ourselves with the knowledge and resources we need to give Michael the best fighting chance possible. We are taking one step at a time, putting one foot in front of the other and we are doing it together.
