Caroline Dick, West Lothian
I was 40 when I was diagnosed with stage four bowel cancer in December 2015. For almost a year before my diagnosis and shortly after I gave birth, I was losing weight very quickly, had anaemia, extreme tiredness, loose bowels, pain at my coccyx and saw blood in my poo.
I went to the GP and was diagnosed with anaemia. On my second visit to the GP, they checked for piles, prescribed me painkillers and referred me for a colonoscopy. On my third visit my GP prescribed stronger painkillers and speeded up the referral for a colonoscopy.
I must’ve waited six weeks before my third visit to the GP, and after that waited another three weeks. I was told at the colonoscopy that they suspected cancer within five days I had a MRI and a CT scan which confirmed cancer. The areas in my lung caused concern as they weren't sure if it was scaring from previous chest problems or cancer so then I had a pet scan two weeks later which confirmed it was cancer.
I had surgery to remove the tumour and a temporary ileostomy, followed by eight chemo sessions. Whilst waiting for surgery on my lungs, a pet scan had discovered that the cancer had spread to my vaginal and rectal areas. That meant I had five weeks of radiotherapy alongside oral chemo.
Following on from that, I had a total hysterectomy and vaginectomy, and had my colon, anus and rectum removed. I’m still waiting for surgery on my lungs.
The effects of chemo left me nauseous, cold, light headed and I suffered from neuropathy and fatigue. A week after the radiotherapy, which I travelled to Edinburgh every day for, caused my skin around my groin and peritoneal area to blister and was infected.
Both my grandparents had bowel cancer but I never mentioned this to my GP – nor did they ask – but I did to my consultant.
I still manage to work and otherwise lead a normal life as I want to keep things as normal as I can for my son. I live life at a much slower place. It’s frustrating not being able to plan anything due to treatments waiting for appointments etc. There’s lots of things I’ve missed as I’ve either been in hospital or not feeling well.
All my treatment was done by the NHS, which has been great. What I find hard is the waiting, it's either for results, scans, or follow ups. I do question if things moved a bit quicker would the cancer have spread as much but then the consultant did say I'm not a typical case. From my perspective I'm the last to know anything and I'm not involved with any of the decision making. I do ask a lot of questions which arise from different treatments I've read about; how the cancer spreads, cea count, etc, but I feel that I'm brushed off as if I don't need to know this stuff. Aside from that I still do have every confidence in the professionals caring for me and I appreciate that it can be difficult for them.
A scan revealed that I can no longer have thoracic surgery as the tumours have grown and spread to the lymph nodes in my chest cavity so now I will be going onto palliative chemo, which I had until September 2018. It wasn’t working so the following month I had a secondary reoccurrence in my pelvis. I had ten doses of radiotherapy over Christmas, but in January 2019 I was told that they found a lesion on my brain. I’m waiting for radiotherapy. At the time of having palliative chemo, I was given years but now the prognosis is months.
But we’re improving access to treatment and care for advanced bowel cancer
Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.
We are determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:
- Increasing survival rates and improving holistic support for patients and their families
- Reducing inequalities in access to potential life-saving liver surgery
- Improving access to cancer drugs based on clinical need and not postcode
- Providing better communications and support for people with palliative and end of life care needs
From my perspective I'm the last to know anything and I'm not involved with any of the decision making.