Emma Burt, Twickenham
I was diagnosed with bowel cancer in October 2015, when I was 44. Unfortunately the cancer returned four years later.
My story starts just after giving birth to my son; I was constipated and I had a pain in my side. Constipation is common after a caesarean so I wasn't unduly worried at first but after a couple of weeks I booked an appointment at my local GP surgery. I was prescribed laxatives.
The laxatives didn't really work; the pain in my side was getting worse and I developed a very high fever. I went back to see my GP; she could feel a lump in my abdominal area and she wasted no time in getting me referred to a private hospital for a scan. I'm fortunate to have health insurance.
The referral was to check my pelvic region and to look at what was assumed at the time, to be a possible infection from the caesarean. I had a scan the next day at my local private hospital but nothing was found. The consultant thought it was appendicitis, but I didn't have any of the typical symptoms. He was insistent, however, that I should have a scan to rule that out and so referred me immediately to a bowel surgeon at the same hospital. I went to see him the next day and had a CT scan of the whole bowel area. It showed that my appendix had indeed ruptured and that the fever was being caused by a large abscess that had formed. There was certainly no mention of cancer at this stage.
As a new mother, the prospect of more major abdominal surgery wasn't that appealing so I was relieved when the consultant suggested a course of antibiotics to deal with the abscess, saying that this would allow us some time and then the appendectomy could wait for a couple of months.
After a week of strong antibiotics, I was no better. I called my consultant and he organised for me to have the appendectomy a few days later.
It was a big operation and my consultant did explain afterwards that it was a bit of a mess in there, saying that he had repaired a bit of my colon that he assumed had been damaged by the poison of the abscess. But, he said it was all done and I would be able to go home in a couple of days – he didn't need to see me again.
So when he walked into my hospital room at 7am on the day I was due to be discharged, I knew something was wrong. These words still ring very loud and clear when I re-tell this story "I’m sorry Mrs Burt but I've had a shocking pathology report overnight. We sent a biopsy to the labs and all of this has been caused by bowel cancer." I was on my own when he told me and it was such a tremendous shock. He tried to reassure me not to fear the worst and that there was a lot that could be done.
The reassurance didn't really help much at that stage and all I could think was 'what do I tell my husband?' He was expecting a call from me to say when to come and pick me up from hospital. It was the worst phone call I've ever had to make.
I didn't tell my mum for a few days; she had recently recovered from breast cancer and was away having a lovely holiday. It was so hard to tell her – she was devastated.
Once all the immediate family knew, I started the difficult task of telling everyone else. People often ask me what the hardest part of having cancer is; apart from the obvious fact that you stare death in the face, I think telling close friends and family is up there with the most challenging thing I've ever had to do.
After my appendectomy and the cancer diagnosis, I had a week at home to recover and then went back to hospital for a right hemicolectomy, the aim of which was to completely remove the affected area of my bowel, to hopefully get a clear margin from the tumour site, and to get a biopsy. We had to wait a few weeks for the pathology report to know the exact nature and severity of the cancer – probably the longest few weeks of my life.
The verdict from the histology and my consultant's assessment was that I must have had a tumour at the base of my colon which had ruptured, which in turn blocked my colon, which in turn caused my appendix to rupture. Due to the rupture, which is unusual and unfortunate, my cancer was stage 4. My consultant, however, was very positive that my scenario had been seen before and was certainly treatable with chemotherapy and radiotherapy.
I was referred to a brilliant oncologist who I liked from day one – she explained everything in a way that made sense to me – both in terms of what had happened to me and what was about to be done to me. I was calmer after that. As an otherwise healthy person with no family history of bowel cancer, I accepted her verdict that this was 'bad luck'.
Once we had a treatment plan, everything was easier to deal with and I felt very positive that I was going to beat this thing!
I had eight cycles of chemotherapy and six weeks of radiotherapy. I handled the chemo pretty well, suffering only from the usual tiredness and peripheral neuropathy. Radiotherapy was worse – not the actual treatment itself but the build-up of side effects – bad tummy cramps and diarrhoea.
Having cancer is tough, especially when you've got young children. My eldest, Tilly, was five years old; she would never have understood what I was going through but I also didn't want her to. I wanted to protect her as much as possible. We just said that I had a poorly tummy but was going to hospital a lot so the doctors could make me better. Fortunately, bowel cancer treatment is kinder on your outward appearance that the treatments for some other cancers; not losing my hair made a very big difference and actually no-one would have guessed I was having chemotherapy.
Recovering from surgery was hard; I had two major abdominal surgeries within a week, only a short time after a c-section. For almost eight weeks I couldn't lift my new-born son and once I started chemotherapy, I had to stop breastfeeding.
My family and friends were amazing – I had a huge amount of practical and emotional support. My radiotherapy treatment required me to go to hospital five days a week for six weeks. I set up a rota on an excel spreadsheet and sent it out to my friends. Within 48 hours I had more offers of help than I knew what to do with!
I responded well to the treatment and was seemingly 'all clear' until October 2019 when I started worrying that something wasn't right. I had been sick a few times and my tummy didn't feel great. I called my consultant and he suggested a CT scan to rule out anything sinister. The scan didn't raise any concerns other than it looked as though some of my bowel was stuck down and might be causing a small obstruction. I was due a colonoscopy a week later, after going away for half term, and we agreed to wait until then to take any further action.
Whilst away over half term I started being sick after eating anything and I felt really poorly. I called my consultant again and he advised a liquid diet and that he would do a laparoscopic procedure as soon as I was back from Cornwall – to hopefully release the adhesions causing the bowel to be stuck and blocked.
I went in for my procedure, hoping it would just be keyhole surgery, not for a minute thinking this was cancer again. My consultant explained before surgery that I needed to trust him, that he couldn't be sure what he would find, and that he would do whatever he needed to do to make me feel better.
A few hours later I woke up in the High Dependency Unit (HDU) to discover that I'd ended up having open surgery to remove a very hard 'concrete like' mass of scar tissue from my abdomen. This mass had attached to my right fallopian tube and ovary and also to the part of my small bowel where it joins to the large bowel. My anastomosis (where my bowel was re-sected from my first surgery) was also affected. Dealing with all of that mess was major surgery and I spent a few days in the HDU before being transferred to the ward. During and after the surgery, my consultant repeated that he didn’t think this was a recurrence of my cancer.
When we got the biopsy results, however, it wasn't the news anyone was expecting; there had been a tumour sitting in that scar tissue all along. The reason it hadn't shown up on all my previous CT scans was because it was effectively hidden. Even though my consultant was positive that he'd removed all of that tissue, it was clear that I would need more chemotherapy to try and zap any remaining cancer cells.
I was blindsided by this news. I really thought I'd beaten the cancer and here I was, all over again, having to tell all my family and friends, all over again, that I needed to go through another bout of cancer treatment.
I was due to have eight cycles of chemotherapy but after three cycles, my tumour markers were going up. They were very high (for me) and my oncologist didn't like the look of it. I had another three cycles and then had a PET scan to try and identify any ongoing cancer activity. Fortunately, this scan didn't highlight any cause for concern and by then my bloods were also very much lowered.
As things stand right now, I am well. I have just had a colonoscopy which was all clear and I am due a CT scan early December.
I am very, very pleased to see what the charity is doing with the 'Never Too Young' campaign. My medical team made it very clear to me five years ago that I was unusually young to have had my diagnosis but since then, several people in my social network have been diagnosed with bowel cancer – all of them under the age of 50. One of them sadly passed away last year, leaving a young family. Another of them is Sarah Bates, a fellow school Mum and one of the champions of this great campaign.
Having cancer has changed my outlook on life and its value, but I haven't let cancer define my life. I have stared death in the face more times than one should before the age of 50, but I am very much alive and try to live the most normal life I possibly can. Having an incredibly supportive husband and family, two amazing children, fabulous friends and a busy working life with a tremendously supportive employer and colleagues, has helped me to get through this, no question.
Physically, living with a shorter bowel can be annoying – but it's totally manageable. The treatment also sent me quickly into menopause which means I am on hormone replacement therapy (HRT) and have to live with the implications of that at a younger than usual age. My tummy scars are not a pretty sight but they don't bother me.
This recent recurrence has made me feel more vulnerable, there's no question about that, but I don't spend my days worrying about what might happen; I have always been positive that I can beat this thing, because it's the only way I can deal with it. I live the fullest life I possibly can – and life is good.
But we’re leading change
Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
What are we calling for?
- Improved clinical guidance and practice on bowel cancer in younger people
- Improved identification of people with genetic conditions and access to surveillance screening
- Improved information for younger people on bowel cancer symptoms.