When were you diagnosed and what with?
I was diagnosed with Stage 3 rectal cancer in September 2023. I was 43 when I was diagnosed, and I’m 46 now.
How did you find out you had cancer?
My bowel movements were irregular for about a year but this came and went, I was fine for months at a time. It seemed to be triggered by certain foods so I thought I had IBS. I was aware of the bowel cancer symptoms and was looking out for blood in my stools but as I didn’t experience this (or any of the other symptoms), I convinced myself it wasn’t anything serious and as it’s such a struggle getting a GP appointment, I kept putting it off. My symptoms ramped up over the summer of 2023, so I went to the GP. She agreed with my self-diagnosis but thankfully ordered some tests ‘just to be sure’. The tests triggered a colonoscopy, which led to my diagnosis. I know lots of people with rectal/ bowel cancer under 50 have had to really fight to have their symptoms taken seriously, so I’m forever grateful to the GP I saw that day.
What did you think and feel when you were diagnosed?
I was told after my colonoscopy they’d identified a mass that they were 99% sure was cancer. I was still a bit floaty from the drugs and it all just felt surreal. I had a fun 5 weeks of scans and tests to confirm the diagnosis, when my head was full of media (mis)informed worst case scenarios. I’m a bit of a catastrophiser and had gone into the colonoscopy convinced it was cancer, so I felt almost like I’d willed it into being. My mum and dad died in 2017 and 2019, both after long illnesses, and my sister and I were very involved in their care. I hated the thought that my sister was going to have another sick person to look after. The words ‘Are you f&!cking kidding me?’ definitely featured a lot as it felt like we’d had enough to deal with as a family recently.
How did the people around you react?
My friends and family were amazing, my sister and brother-in-law especially, coming with me to all my appointments to take in the information I was too shell-shocked to absorb properly. I find it really difficult to ask for or accept help so I’m lucky to have family and friends who really showed up, providing distraction visits at home/in hospital and helping out with tasks – from weeding my garden to descaling my ancient kettle. I’m a primary school teacher and was doing a long-term supply role when I was diagnosed. My school had no legal obligation to me but were really supportive. I wanted to work for as long as I could to maintain a bit of normality and they worked with me to make that happen through my first block of chemo and radiotherapy.
What treatment did you have?
I had 3 months (4 cycles) of CAPOX chemotherapy and then 5 weeks of daily radiotherapy + chemo pills. I had surgery in the summer of 2024 – loop ileostomy with a temporary stoma. The histology showed traces of cancer in the blood vessels so I was due to have another 3 months of chemo, FOLFOX this time. I only managed 3/6 rounds though – I had some adhesions in the section of bowel leading up to the stoma and though it was functional, it had never worked as it should.
When chemo restarted, I kept getting bowel obstructions. I spent most of October 2024 throwing up (including learning the term feculent vomiting, which I could have done without…), leading to 6 A&E visits in 8 weeks and three separate inpatient stays of about a week each, before they decided to reverse my stoma (planned for 6-9 months later).
How are you feeling through treatment?
I feel like I got off relatively lightly with the physical side effects from my first block of chemo – it wasn’t fun but I got through it, and was able to work a combination of part and full time. My second block of chemo completely floored me though and the concept of working through it the first time felt completely ridiculous! It all felt pretty relentless. I tried to take it one day at a time and just focus on the current phase of treatment but I remember feeling like it would never end. I tried to remember how lucky I was, in the Russian roulette of cancer diagnoses, that my medical team were aiming for a curative outcome. Looking back now, it feels like it all happened to someone else.
What happened after treatment finished?
I’m missing a couple of sections of bowel now and though it’s been better than I was warned it might be, my bowel function is still quite unpredictable and I have a lot of anxiety about not being able to get to a toilet in time. And of course, general anxiety that the cancer is still lurking in my body/ has spread – especially as I wasn’t able to finish all of the planned chemo. I’m still on 3-month surveillance scans and am torn between wanting to keep an eye on everything and wanting longer gaps between the scanxiety.
My energy levels are getting back to normal now but I still have to plan what I’m doing and factor in rest. I definitely feel like people expect me to be fine now – both physically and emotionally – and it can be hard to explain that that’s not how it works.
How did you get involved with Shine?
A friend mentioned Shine to me in the early stages of my diagnosis. I felt very supported by friends and family but I had a really strong need to meet other people of a similar age who had cancer. 
What difference has Shine made to you?
The online and in-person meetings really helped fill that space in my support network and made me feel less alone. I did the Break Out programme about 6 months after my diagnosis and it was so useful having that space to talk through some of the issues that come up during diagnosis/treatment, and meet a lovely group of people at the same time. I still refer to some of the tools we talked about! I also attended a London ‘Shake Up’ event just before my first surgery. The day was great in itself but I had a call from the hospital during it which sent me into a bit of a spiral, and it was the best possible place to be spiralling as everyone understood and couldn’t have been kinder.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
I was in therapy before my diagnosis, and it’s been massively helpful in managing all of the emotions, reminding me to feel all the feelings (instead of pretending I’m fine, my natural response) and to be kind to myself. I saw someone describe cancer as having rearranged them and that feels about right. I’ve always been quite critical of my body – the fact that most of my joints don’t work properly, wanting to lose weight etc. For a while there I was a bit resentful that my own body tried to kill me, that I missed out on so much during treatment. Now I’m just really grateful to my body for getting me through the last couple of years.
If you could give one piece of advice to yourself before your diagnosis, what would it be?
Go to the GP sooner feels too obvious a choice… I’ve always been a big worrier so I think I would tell myself to worry less about the small stuff. Living your life and appreciating all of it – the good and the bad. Make the plan, book the holiday, buy the print you don’t need but will make you happy every time you look at it.
