Beating bowel cancer together

Claire Bothwell, 40 from Glasgow

On 3 June 2016, I was diagnosed with bowel cancer, aged 38.

Seven or eight months before my diagnosis, I had caught a nasty bug but whilst I thought I was on the mend my bowel habits had changed considerably. My bowels had always been quite regular, but at its peak I was going to the toilet up to 16 times a day. Thinking it was a bacterial infection, I bought all kinds of expensive probiotics and even invested in fancy poo sample kits that tell you the levels of bacteria.

I never thought it could be bowel cancer. I had none of the risk factors. It wasn’t on my radar.

Over Christmas I was experiencing the classic bowel cancer symptoms – blood in poo, anaemia, weight loss, severe pain in my tummy – but I had just had my third child and was breast feeding so I put it down to this. However I was very concerned so the first opportunity I got in January I went to my GP.

To be fair to them, they did refer me to a gastroenterologist but there was a five month wait. I wasn’t prepared to wait this long so I booked to see a private specialist and got an appointment in February. He also didn’t think it was bowel cancer and the £2,000 price tag of a colonoscopy put me off, instead he recommended some excellent probiotics.

I used them for months but they weren’t very effective and by this time, I only had a few more weeks to wait for my NHS gastroenterologist appointment. I went to back to the GP as I was still in a lot of pain. They thought it could be IBS, but I refused all drugs as I was breast feeding and didn’t want to harm my baby. Instead they prescribed me peppermint capsules.

What I should’ve done was go to A&E. Instead I carried on going to the GP, I was in tears as I couldn’t look after my three children. I was spending half my time on the toilet. I was just too nice, I didn’t push for an urgent referral. I took what they prescribed me. I wasn’t angry at them. I was easy to fob off. Niceness kills people.

Over the course of one weekend, I couldn’t get out of bed. Luckily my husband was there to look after the kids. I thought it could be my period about to start back after pregnancy, I had burns from my hot water bottle.

My bowels had always been quite regular, but at its peak I was going to the toilet up to 16 times a day.

By this time it was May and I finally had my gastroenterologist appointment. I had high hopes for this appointment, I thought it was going to be the answer to all my problems. After all, I had waited five months for it. Again, the consultant didn’t think it was cancer either but he did refer me for a colonoscopy. However there was a three and half month waiting time. I couldn’t believe I was on another waiting list.

I had a breakdown on the phone to the consultant’s secretary. I couldn’t wait three and half months. I needed to look after my children. Thankfully she put me on a waiting list of cancellations and I only had to wait a month for the test.

It was on the 3rd June that I had a colonoscopy. The tumour was so big, they couldn’t get the scope past it. I had a total blockage.

I was so relieved just to get a diagnosis. This is something I can fix. I researched bowel cancer and knew that if it was caught early enough it’s curable. Although my gut feeling was telling me that mine wasn’t an early diagnosis.

Once I was diagnosed the NHS rolled out the red carpet for me. 13 days after my diagnosis I was having surgery to remove the tumour. I was relieved. It was incredible, I only had 13 days of knowing I have cancer and now I don’t have it. Completely gone.

My optimism didn’t last long. A CT scan before surgery had revealed “lesions” or marks in my lungs, and my next scan after three rounds of chemotherapy showed that they had grown confirming it was a metastasis. I was diagnosed with having stage four bowel cancer.

The first line chemotherapy unfortunately hadn’t kept the cancer at bay so I was upgraded to the next level. I had a PICC line put into my arm – a plastic tube that went up my vein and into my chest cavity to deliver the toxic infusion. I remember it was the day before Halloween and thinking it made for a great costume accessory. Six months of the second line chemo stabilised the lung tumours. No shrinkage, but also no growth.

I was referred for Radiofrequency Ablation or RFA. The other option was to remove half my lungs surgically, which isn’t really an option for me given the high chance of it coming back I needed to preserve my lungs. They don’t do RFA in Scotland so I went to London for it. Going to London wasn’t so bad; I actually ended up extending my stay so I could see a musical in the West End. I only stayed in hospital for two nights and although I came out armed with painkillers, I didn’t need any.

I was so relieved just to get a diagnosis. This is something I can fix.

Although the RFA successfully burnt out five tumours, a CT scan just weeks later found another tumour. They’re only a few millimetres and so really difficult to pick up. A PET scan revealed yet another one.

I’ve not been on chemo for six months whilst waiting for the RFA, which is why two more tumours have grown.

Another depressing scan showed that the cancer has now spread to my pelvis. This is inoperable. This is the worst news out of all of them. I can’t fix this with surgery. I have very limited options.

I really need to be on permanent chemo. At the moment I’m having daily radiotherapy – I’m in my second week of five but there’s only a small chance that it’s going to work.

I have to live for my children. I need 15 years so I get to see my youngest child as an adult.

At this stage my best hope is immunotherapy, and I’m still optimistic there will be a cure found within my lifetime.

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

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