I am a Mum of three and work full time as the Chief Data Officer at the Department for Business and Trade. I also am a keen and reasonably well qualified (I passed my World Bronze award this year) athletics official. I am a trustee of two recently founded charities – this one and Bottom Line.
I was ill for a number of years before I was diagnosed in 2022 – with Anal Squamous Cell Carcinoma. I have a stoma and numerous long term radiotherapy side effects despite being NED since Christmas 2022.
I am passionate about supporting people to help themselves and struggle with the fact that many people would ‘rather be dead’ than have a stoma. Bowel incontinence – indeed all types of poo – is still too much of a taboo subject which no doubt delays many diagnoses!
Although I would much rather have not been on this journey, I have many new people in my life, have worked out who is a supporter and who could not cope with my diagnosis from my previous friend groups. And have a completely different mindset and outlook. I certainly take opportunities afforded – we are all a long time dead, plenty of time for sleeping then.
I am extremely lucky to be supported by three wonderful children and looked after whenever needed by my Mum – who has been a godsend through the whole unfortunate journey.
My journey
For many years I had issues with rectal bleeding. These were looked into in 2001 (colonoscopy before children), 2004 (after first child when I had abnormal cervical cells removed) and again in 2016 (another colonoscopy where they removed a polyp but did not get to the bottom of the pain in my … well, bottom!)
The pain and bleeding got worse. In Covid people were only interested in covid so I kept being fobbed off. I was homeschooling my children while working full time and could literally not get anyone to take me seriously despite being periodically incontinent and having lots of bleeding every time I passed a stool.
Finally, after many arguments with the GP receptionist, I got an appointment with a newly qualified GP who immediately referred me under the 2ww. In October 2021. I had a call from the hospital in November saying they would not see me unless I did a FIT test. Which they lost in transit. Then another which was over 400mg blood per whatever the measure is (referral number for symptomatic individuals is, I think, 10).
So I went, in January 2022, for another colonoscopy. But this time I was prepared – in the sense that I could feel a big lump just inside my anus opposite the vagina side. I explained to the colonoscopist (is that a word?) about this lump so he was ready. I was worried it would be missed when the scope was inserted deep into my rectum. I am sure I had it at the previous colonoscopy and that was why it was so painful – but by the time they inserted the camera they had passed it. This time – bingo. A 5cm polyp, too close to the anal verge to remove there and then, but certainly the cause of my issues. Unremarkable looking. The pain of the rest of the procedure was horrific. But at least I had an answer. No mention of the C word – but acknowledgement that my ‘issues’ were urgent and I would be prioritised for surgery.
3 weeks later I was admitted for day surgery to remove the polyp. It was the February day of the storms – a Friday when no one else seemed to go to work. But the surgeon and his team were in the hospital and were going to give me my bowel control back – until they weren’t.
In recovery, as I came round, the surgeon was waiting. He did not do the surgery but did take some biopsies. Textbook anal squamous cell carcinoma. But rare so only ever seen in a textbook. 99% sure it was cancer. Would put bets on SCC – but we had to wait to get the biopsy results. In the meantime I would have a CT and MRI. I was being prioritised. Probably the hardest thing I have ever done is tell my kids and my Mum.
The colorectal nurse I was assigned was an angel. She phoned on the day of the MDT to let me know they had confirmed it was SCC and I had an appointment the next but one day to discuss what now with the surgeon.
The following week I had a stoma created. This actually saved me from the incontinence and the bleeding. But it is a psychological shock. And then the waiting started. Post Covid there were a lot of sick people to get through a creaking system.
After the first lockdown I moved out of my marital home and started the divorce process. After diagnosis my ex-husband agreed a settlement and on the day I had my lymph biopsy which confirmed that the cancer was also in my lymph nodes I completed on my own home. I still could not lift anything so close after stoma surgery! The following week my divorce was finalised.
I started treatment late in the May. The standard treatment for SCC in the UK (up to stage 3) is 28 cycles of chemoradiotherapy. Rather than more biopsies when there were more suspicious nodes, I decided we should zap them all. I needed to get on with the treatment.
Mitomycin was horrible. I had all of the side effects – the most debilitating was the nausea in the mornings when I had to eat to take the capecitabine. The radiotherapy was actually quite straightforward. But it made me really thirsty.
Then the burns came. I had been warned and I had read up on it. In week 3 I moved to baggy soft boxer shorts. By week 4 I was fully commando and looking for fans to cool the burning skin. In week 4, when I started taking opioids for the pain I stopped work and driving. The last day I drove was to go to my daughters end of term play for the end of primary school. The school were amazing letting me sit next to an open door to keep me away from any germs and particularly covid. But I really don’t remember too much – just trying to survive.
The last week of treatment was really hard. My Mum was staying with us to help with the kids and look after me made sure that I ate and went out every day. On my last day – a Friday – I had treatment in the morning and the evening so that I could avoid coming back on the Monday. And that was it.
The burns continued to worsen for a week to 10 days and then I turned a corner. A month out of treatment I went to judge the long jump at the Commonwealth Games in Birmingham. In September I still had some evidence of disease but by December I was NED.
I wish I could say that was it – I have been fine since. But as many of you will know cancer is not like that. I have a new normal. I have come to terms with it but not always the expectations of others! I still have many radiotherapy side effects, adhesions which have caused a bowel blockage and I am currently waiting for surgery to repair a giant parastomal hernia.
But I have recently been to the Amalfi coast with my older daughter, am looking forward to spectating when my son runs a half marathon in November and celebrated my youngest daughter being part of the U15 girls relay team in the England championships for her athletics club. I work full time and do a lot of voluntary work – athletics volunteering, as well as some charity work for Bowel Matters and an Anal Cancer charity I helped to establish – Bottom Line. Life is certainly worth living – even though this is not where I thought I would be when I was 52!