Melissa Boon, Berkshire

I was 35 when I was diagnosed with stage 3 bowel cancer in January 2017. I later found out it had spread to my left lung in September 2017, making it stage 4.

After the birth of our second child I visited my GP four times to explain that I had noticed blood when I went to the toilet. Each time I was told it was to be expected after labour, and that it was probably haemorrhoids. I was given medication several times but it would only help for a week, and then symptoms would quickly return.

15 months later things progressed and I found myself going to the loo over ten times a day, sometimes only to pass blood. I returned to my GP and requested an examination as something just didn’t feel right. My GP was shocked when he found no sign of haemorrhoids. This prompted a load of blood tests, all of which came back normal. I was told a referral to an NHS specialist would probably take over six weeks as I was low risk. I requested to be seen privately. I was seen three days later. Initial examination showed a large polyp, highly likely to be cancerous. I was then referred for a colonoscopy four days later, which is when I was diagnosed.

Without much time to process the news, my husband and I made plans with family to help support us in looking after our two young girls (aged one and four). I explained to work I would need some time off (having only just returned from maternity leave!) and I would be back in about 8 months.

Nothing prepared us for my relentless, gruelling treatment programme and just how long it would all take.

I started with downstaging chemo-radiation. Side effects were hard. I was thrown into the menopause overnight, with all that it brings, alongside dealing with extreme fatigue, radiation burns, nausea, sickness, painful hands and feet and thinning hair. Once my oncologist deemed me strong enough I had a lower anterior bowel resection (a section of bowel removed) and a stoma (ileostomy) formed. The op went well. Recovery was tough, but I adapted quickly to life with a stoma and was grateful to still be alive.

In August 2017 my worst fears came true when I was diagnosed as stage 4. A shadow on my lung we had been watching since diagnosis, had started to grow. I was whisked in for a lung resection. After a few complications I recovered well, with only a few small scars to remind me it happened.

Four weeks later I started nine cycles of chemotherapy. This was mentally challenging. Side effects were, numerous, immediate and debilitating. The relentless schedule took a huge toll on the family. By the end of it all, we were exhausted.

I’m happy to say that the following month I had clear scans. To be told I was in remission was incredible. I allowed myself and the family eight months for recovery. Where we had a jam-packed summer to re-connect, recover and process what we had been through. It all felt a bit surreal.

Once I was strong enough, I opted to have an operation to reverse my stoma in October 2018. This has been much harder than I hoped, and the op hasn’t been as successful as expected. I’ve been diagnosed with Lower Anterior Resection Syndrome (LARS) I’m still working with my surgeon on how to manage it, but ultimately, at some point, I may revert to a colostomy to improve my quality of life.

Now that the storm has passed I’m left picking up the pieces. I have been off work for 25 months now, not the eight I initially thought! I’m starting ill health retirement soon. Surgery and chemotherapy have taken its toll on me physically and mentally.

The cause of my cancer is an exceedingly rare genetic mutation, POLD1. Which puts me at high risk of further bowel cancer, brain cancer, breast cancer and uterine cancer. For some of these I am now on a screening programme, but for others it’s a case of watch and wait. The positive news is I’ve just had my 12-month scan and I’m still in remission.

In the last two years my life has changed dramatically. This might not be the life I planned, but I’m grateful it is still life. We now view life through a different lens. We appreciate the small things, the day to day life that we once took for granted, we now appreciate. We are grabbing the better days when I am well, to be together and make the most of what we have.

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