Emily Meunier, Fife
I was diagnosed with stage 4 bowel cancer in January 2020, aged 38.
On and off for around five years I had been passing blood and submucosa with my stools.
I did go to my GP on multiple occasions. At one point I was referred to a gastroenterologist at Royal Berkshire Hospital but we had not seen eye to eye on a way forward and I had asked for a second opinion. However due to work commitments, I hadn’t got around to finding a different doctor to advise me.
In the end I had settled for my GP’s opinion – that I had extreme irritable bowel syndrome and it was not helped by me ‘clearly being very stressed and anxious about it’.
Therefore I put it down to a combination of: genetics, one of my brothers has Crohn’s disease; work/life balance, as I was at the time juggling four jobs to pay the mortgage; local water quality, which as an environmentalist I had genuine concerns about; and food quality, so I switched to sourdough, less processed, organic options, and tried to cut out any trigger foods such as couscous and cauliflower.
However in December 2019, I had a particularly painful and prolonged ‘flair up’ which resulted in me gradually going downhill to the point where I had been unable to eat for almost two weeks and could barely move without being in unbearable pain. I was also vomiting so much green bile, I attended A&E and my stomach was bloated to an extent that one nurse remarked that I looked eight months pregnant.
I was finally granted a scan on my fourth admission to A&E on 1 January 2020. This was after three previous attempts to be treated at A&E where each time I had been made to wait in agony and refused water or IV fluids, even though I had been recognised as dehydrated. Only to be sent home with laxatives and a recommendation for an ‘urgent’ colonoscopy as an outpatient.
It was first suggested that I might have bowel cancer when one of the colorectal cancer nurses introduced herself to me the day after surgery. At that time I was terribly ill and I didn’t want that news, so I said that I’d call her if it was confirmed that the tumor was cancerous. I felt that I just needed to take one step at a time and first recover from the surgery and let it dawn on me that I now had a life changing stoma. That’s all that I could manage and focus on.
The consultant surgeon actually said to me that I have bowel cancer a month after my surgery. I wasn’t surprised to hear the news and had pretty much expected it. I was pleased to learn that they had been successful at removing all the tumour and 47 affected lymph nodes. The operation had been a complete success, I’d survived and I felt incredibly lucky to still be alive after everything that I’d been through.
Following the surgery, I was terribly ill: unable to hold down food, vomiting up bile and faeces, malnourished and dehydrated, I was in a lot of pain and on very strong painkillers. I was unable to get out of bed and stapled together right down the middle of my abdomen.
Gradually my strength built up and I managed to get out of bed and move into my chair on maybe day two or three. I was focused and determined, I would get better. I forced myself out of bed and started walking up and down the corridor at every opportunity when I had a little energy to spare. Every day got a bit easier and I persevered with just drinking fluids and only eating watery food such as soup or ice cream. Soon enough I was getting bored of my surroundings and so I ventured further, out of the ward and discovered that they have beautiful paintings on exhibit in many of the main hospital corridors. This lifted my spirits!!
I also had to get used to life with a stoma. On my daily hospital corridor walks, I talked to my older brother Stephen about my stoma and how it smelt so awful when the stoma bag gets emptied and that I was struggling a bit to come to terms with it. He suggested we name it, something funny, maybe even get the name tattooed above the opening? It didn’t take long for us to think of a name that suited. We both loved Jim Henson’s Labyrinth movie and reminisced about the ‘Bog of Eternal Stench’. Stephen suggested ‘Sir Didymus’, the Old English Sheepdog riding fox-terrier who guards the notorious bog. Perfect. My stoma was named, something funny, and actually that immediately helped me to accept it.
After returning home I made good progress. We were shielding as a household due to coronavirus, but it was tough. My daughter still couldn’t return to her home and my son was struggling a lot with his mental health due to the prospect of staying home indefinitely and worrying about whether he’d be able to return to work and college.
My grown up 23 year daughter Isobel was supporting me with most of the physical tasks and my 17 year old son Caleb was taking responsibility and good care of our three dogs who needed daily walks that I couldn’t give them.
I went for daily 40 minute walks on my own or with Isobel at the nearby University Lakes and as I got stronger we visited other local greenspaces and started work on our allotment and garden too creating a Victory Veg Patch and developing of wildlife garden. I felt that I was completely better by mid-February and ready to return to my job leading a National Lottery funded mental health project for my local Wildlife Trust. It’s a physical role doing practical conservation work with the aim of engaging people in nature for emotional and physical benefit. I was to start my phased return in April. I was excited.
Unfortunately that didn’t go to plan. I had a follow up appointment with my oncologist at the end of February who informed me in what would become the opening line to each of our forthcoming meetings ‘It’s not good news I’m afraid’.
A scan had shown a growth on my liver. He said that it was unlikely to be cancer and was probably just a cyst but that we needed to check. I didn’t believe his uncertainty and knew deep down what I think he knew too, that it was indeed cancer. Next thing was to have all the various terrifying scans (I’m very claustrophobic) including a PET scan in Oxford where they inject you with radioactive sugar.
And then I got a date for my second operation: 30 March 2020.
It was just a few days into the initial national coronavirus lockdown when my daughter drove early in the morning to Basingstoke Hospital for my planned liver surgery. She had to leave me at the door as I wasn’t permitted to be accompanied or visited during my stay due to the covid restrictions that were in place at the time.
Normally this would have been a big issue for me as I’m naturally a worrier and nervous of risk. However, I felt ok about it and in fairly safe hands. I’d done some research into my allocated surgical consultant and talked to her briefly on the phone a couple of times prior. The nurses had explained to me that I’d be on a ‘Covid safe’ ward. One that was in normal times used as a ward for privately funded patients. I’d researched the ward facilities beforehand too and knew that I could look forward to a private space of my own with en-suite shower room and even an in-house posh chef! I wasn’t disappointed when I arrived at my room. It was my own and I could rest and feel safely distanced from other patients. The staff were fairly calm and mostly attentive. I felt confident that I was doing the right thing and that this surgery was the best chance that I had of surviving this cancer.
Three days after the surgery I returned home with a bag full of wound dressings, drugs to stop my blood clotting, reduce inflammation caused by the surgery, and just simple paracetamol for the pain. This time I had stitches rather than staples.
My daughter collected me. That journey home which took about half an hour, was eye wateringly painful. Even just getting into the car was agony and then it continued for the whole way back. But I got home, safe from coronavirus. I was to shield with my children around me and our dogs. It was so nice to be with them all again.
For several weeks after the operation I was in a lot of pain with my shoulder, which I found really hard to deal with. It was stopping me from doing all the craft, cooking and gardening that I find restful and was also preventing me from getting much sleep. But I did specific exercises which gradually eased the pain and enabled me to do more. I started going out for regular and longer walks again with Isobel and later with our dogs too.
I started chemotherapy in June, but this had to be stopped due to the progression of the disease.
I then moved to Leslie, Glenrothes in Scotland. It had been my intention to move up to Scotland when my two year Wildlife Trust project job was due to end so that I could be closer to my grown up daughter. She’d been studying Mathematical Physics at Edinburgh University for the past five years and during that time we have missed each other terribly. Whilst I was recovering from my first operation, I had decided to split up from my husband. I had been unhappy for a while. I soon also realised that I would need to find a new place for me, my son and our dogs to live. We couldn’t afford it but in the end we found a way for me and my daughter to live in Scotland and my son to remain studying art in Reading.
In Scotland I had Endoscopic Retrograde Cholangiopancreatography (ERCP) and two stents to alleviate the jaundice that I had, caused by the tumour growth.
I’m now due to start chemotherapy again. I’m hoping to start on a clinical trial.
Just before my planned move to Scotland, I was told that my cancer was particularly fast growing, very unlikely to be curable and that I may have less than a year to live. I was also told by my oncologist that they had tested the tumour that had been removed and found my cancer to be BRAF mutated.
I was surprised that this mutation had not been flagged up earlier, as my surgeries had taken place at the start of January and end of March - it was now July. The options for treatment were now offered as palliative, to prolong my life rather than save it.
At this appointment I was advised that I could have chemotherapy but that it was unlikely to be very effective. Or, if I were to stay in Reading- I might be able to get a new clinical trial treatment (The Beacon Trial) on a compassionate basis from Oxford.
At my next appointment two weeks later, I explained that I had very recently bought a house in Scotland with my daughter so that we could be close and that I couldn’t and didn’t want to change these plans. I asked that I be transferred to a new team up there.
My oncologist’s face lit up a little and he recommended that he get in touch with a particular doctor in Edinburgh who he’d worked alongside years ago. On 18 September 2020 we arrived at our new home in Fife. I was extremely ill at the time with Jaundice as my cancer had continued to grow and was pressing against my bile and pancreatic ducts.
The next day I found out the devastating news that NICE had not approved ‘The Beacon Trial’ drugs on the basis of cost alone. These drugs: Encorafenib and Cetuximab, have been proven to shrink my type of cancer and have worked extremely well for others such as the incredibly courageous Deborah James aka @BowelBabe.
My best hope is to access this treatment which as well as being more likely to work would also enable me to have a better quality of life as the chemotherapy is hard to cope with as there are many difficult side effects. After hearing this terrible news I set up a Facebook page @Craftycoloncan and later Instagram @Craftycolon to raise awareness of my situation and to try to gain support from other people and organisations that might be able to help.
I am really happy and relieved to hear that NICE have now recommended the drugs on the NHS in England and Wales. I have my fingers and toes crossed that the drugs will very soon be available in Scotland, where I live, and Northern Ireland as soon as possible. BRAF cancers grow faster than others so there's no time to lose!
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're 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.