Richard Bingham, East Sussex
I was 38 when I was diagnosed with bowel cancer in May 2016. When I was diagnosed, I found out the cancer had spread to my liver, meaning I was at stage 4. Later some “nodules” were spotted in my lungs in October 2016.
Symptoms started in February 2016, when I felt a pain in my backside, with a feeling akin to having a golf ball lodged up there! I also had changes in my bowel motions. I waited about a month from getting my symptoms to going to see the doctor.
When I first went to the doctor, it was initially diagnosed as possible IBD so I went away with some pills under instructions to return in two weeks if they didn’t help. The thought that it could be cancer did cross my mind but didn’t realistically think that aged 38 it was very likely. I believe it was discussed briefly with the GP who acknowledged that, while it was unlikely, it was a possibility.
I returned two weeks later, in April 2016, and pushed for a colonoscopy. The GP organised it, but the wait was going to be several weeks. I am lucky enough to have private health insurance, so I organised one privately which took place a couple of weeks after my last chat with the GP. It was immediately after the colonoscopy, which took place in late April 2016, that I got my diagnosis.
For treatment, initially I had one round of chemo which gave me Chemo-Induced Colitis and left me in hospital for two and a half weeks being fed through a tube. This was due to an undiagnosed DPD-deficiency meaning certain types of chemo were dangerous to me. Once I had recovered, I had 25 rounds of radiotherapy over the summer of 2016 followed by a Total Mesorectal Excision in November 2016 along with the fitting of a stoma bag. This was followed by six rounds of chemo (on a reduced dose), then liver surgery in April 2017 to remove half my liver, my gallbladder and a tumour. In May 2017 I had another 6 rounds of chemo and my stoma was reversed in August 2017.
A scan in September then showed changes to the tumours in my lungs so there was yet more chemo before the lung tumours were “zapped” using Radio Frequency Ablation (RFA) early in the 2018.
The thought that it could be cancer did cross my mind but didn’t realistically think that aged 38 it was very likely
Throughout 2018 I had sporadic bursts of chemo as well as RFA on a new tumour that appeared in my liver, all the while suffering from fissures in my anus which meant bowel movements were excruciating. These were eventually treated with, believe it or not, botox injections in my bum (while I was under anaesthetic) which helped greatly after a while.
I was forced to have a break from chemo in early 2019 owing to adhesions in my abdomen which were finally dealt with in February 2019, but in the interim the cancer went a bit crazy, especially in my lungs where, at the last count there were about 40 growths. The cancer is also now confirmed in my lymphatic system. I am continuing with chemo to try to bring the cancer under control again so I am currently back in a “wait and watch” situation.
My life is unrecognisable compared to how it was before cancer. I was active, healthy, busy, happy, getting on with life and making good progress. Exercising, socialising, making headway with my career were all essential parts of my existence which I was thoroughly enjoying.
Cancer has taken all that from me. I have had so much treatment over the last 3 years that only rarely do I get to do any exercise these days, even a gentle dog walk or the like. I go to work when I can but during chemo this is perhaps 2-3 days per fortnight, and I have had to have extended periods off work while recovering from nine separate operations since diagnosis – three of which were extremely intrusive. The bowel surgery also resulted in my being rendered infertile, prior to having children of our own. Thankfully I was advised to bank some sperm prior to surgery so the option of IVF is hopefully still open to us.
My wife and I have also been utterly overwhelmed by the level of support, love, generosity and kindness that has been shown to us since I was diagnosed
I am tired, I am weak, and my bowel habits have changed significantly meaning I can rarely be too far from the loo. My wife, who has her own digestive and mental health issues, has suffered enormously as well, while also being the most amazing, supportive, wonderful team mate in all this that anyone could hope for. But it has certainly taken its toll on her as well as my family.
That said, my wife and I have also been utterly overwhelmed by the level of support, love, generosity and kindness that has been shown to us since I was diagnosed – it is truly staggering. I believe this is in part because I have been fairly public about the journey we have been on – I have kept a blog throughout this awful journey and the number of messages of love and support we have received from all over the world has been extraordinary.
We are also very lucky to have an amazing group of friends and family locally who have done so much for us – from cooking and dog-walking to lending us homes to escape to and even doing the odd whip-round to raise money so we can treat ourselves occasionally.
So it’s not all bad…but it’s by no means all good either. It has been one hell of a journey and not one I would wish upon my worst enemies.
Richard’s blog: https://www.thenextcorner.co.uk/
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