Kirsty, Renfrewshire

I was diagnosed with bowel cancer at the age of 39.

On 24 March 2021, immediately after a colonoscopy, I was informed I had a malignant tumour in my rectum. I was 39, fit, slim, healthy, didn't eat much meat so I was in the low risk category although I don't think these stats apply to younger adults as most people on Bowel Cancer UK's "Younger people with bowel cancer" page are slim and fit.

Ten weeks previous to diagnosis I had been going to the loo up to ten times a day, had pain in my lower abdomen and lower back and occasionally there was blood in my stool. When discussing with my mum she urged me to get to the GP as she knew a couple of people who had bleeding and ended up being diagnosed with bowel cancer. I knew something wasn't right so I booked an appointment with my GP who took blood and the FIT test (stool test), although she advised it was probably irritable bowel syndrome, I'm so glad she was thorough.

The FIT test came back at over 400 so I was booked in for a colonoscopy three weeks later. Immediately after the colonoscopy my world turned upside down in an instant and the rollercoaster cancer journey commenced. I thought I was dying and wouldn't be able to see my daughters (aged five and eight) grow up. Those first few weeks before treatment were awful and I was consumed with worry constantly googling tragic cancer stories. However there's so many positive stories out there too so my advice would be not to read too much on the internet or focus on statistics as everyone is unique.

The wait for scans and results is torturous. After diagnoses I received a letter to advise my MRI scan was a month later. There was no way I could wait a month to know if the cancer had spread. I was already not eating and sleeping because of the unknown. Luckily the hospital managed to bring the scans forward. Initially it seemed to be bad news after bad news. The CT scan showed no spread – great, then a few days later the MRI results came back which showed an enlarged distant lymph node on my common iliac so I was referred for a PET scan. Still reeling from this distant lymph node which technically jumps me up to stage 4 cancer I was told that the PET scan showed up a 4mm lung nodule. They couldn't be sure it was definitely cancer however it was showing up bright on the PET scan.

Something I must mention is anxiety pain. I'm not a worrier however being diagnosed with cancer changed that for me. I had pains in my upper abdomen/side and back. I was convinced the cancer had spread to my liver. After speaking with the GP it turns out it was anxiety pains which I didn't actually believe was a real pain. When I did breathing exercises this helped the pain. I had been holding my breath which restricts your diaphragm and causes real pain.

I had an advanced rectal tumour so had five weeks of chemoradiation. Every Monday to Friday for five weeks I got radiotherapy and took chemotherapy (capecitabine) tablets. It was very time intensive travelling to the Beatson everyday however on the plus side treatment didn't affect me too much. I couldn't be too far away from a loo but I was working from home so that was fine. I also had no problems with skin burns. The chemotherapy tablets did make me feel quite sick – the two day break at the weekend was always a welcome. I am now experiencing early menopause symptoms, the worst being the lack of sleep. I wake up a few times a night with hot flushes. As the weeks have progressed I am definitely sleeping better although I'm getting joint pain.

In July I had another CT scan. Scanxiety was back with a vengeance, I was focusing on all the horrible and sad stories again, convincing myself the cancer had spread. I was crying going into the oncologist's office. She quickly informed me that it was good news. The radiotherapy had worked on the lymph nodes, they were no longer visible. The tumour had also responded well however I would need intravenous chemotherapy (oxaliplatin) to shrink it a bit more and also to prevent spread as the cancer had travelled in my body. The lung nodule had also shrunk so it was a case of "watch and wait".

I had six cycles of chemotherapy along with oral chemotherapy tablets. The effects of this was much tougher. I felt quite sick, had muscle spasms in my jaw after eating, legs and sometimes hands, it affected my nerve endings so couldn't touch anything cold for a few days or drink anything cold for a few days. The nerve endings on my tongue still aren't right so certain foods don't taste nice. I was also very tired so often had to snooze during the day. For the last two cycles the dosage was reduced by 20% as my neutrophils and white blood count were very low.

Three months on from finishing chemotherapy I still have peripheral neuropathy in my finger tips and feet however I see it as a small price to pay if it has kept the cancer at bay! I had another scan in November to ensure that I was ready for the operation. I wasn't as nervous this time as my carcinoembryonic antigen (CEA) /tumour markers were steadily coming down. When first diagnosed they were 12.8 then after chemoradiation went down to 2.8. They did fluctuate and increase a little bit on chemotherapy.

Still no lymph nodes were visible on the scan however there was a section of the tumour out with the operating margin. The decision was made to crack on with the operation as I had as much pre-op treatment as was possible. The operation went really well and I was delighted the tumour was removed with clear margins, the area they thought was outside the operational area was a shadow on the scan! My surgeon at the Royal Alexandra Hospital is great and the aftercare was amazing. I did need a temporary stoma which took a bit of getting used to but after a few weeks it's much easier. Hopefully I won't have it for too long!

Three months after the operation I have received my first post-op scan results and I'm delighted to say the lung nodule hasn't grown so they can't be sure it is cancerous and there's no other visible cancer in my body. I am high risk of it coming back so I will be scanned every three months for the next year.

Bowel Cancer UK's forums have been an incredible support. I myself haven't posted much however the information you find is such a great support and comfort. The people that constantly reply with all these stories of hope and positivity are truly inspiring and I hope to contribute to that myself in a few months' time after, fingers crossed, a couple more positive NED scan results!