‘Plan your funeral and get your affairs in order’ – former Barnstaple councillor shares moment his world collapsed

‘You’ve probably got just a few weeks to live’… A former Barnstaple councillor has been speaking for the first time of the moment doctors diagnosed him with a rare cancer.

Simon Harvey, aged 59, was diagnosed with acute myeloid leukaemia with a TP53 gene mutation a year ago and has already defied expectations, but says he has no idea how much time he might have left.

In 2023, Simon began feeling some liquid in his throat, but various doctors could not discover the cause, with allergies or acid reflux their best guess and he tried numerous medications, but they didn’t help.

When chest pains began a year later, he sought a private consultation and insisted on a chest scan – the results of which brought his world crashing down.

Simon is well-known in Barnstaple after serving as a town councillor for 13 years up to 2015, campaigning on many issues including regenerating the town centre, traffic issues and better access for people with disabilities.

He has continued to raise awareness of community issues, but that day at the private consultant’s office put everything on hold.

He said: “The scan came back within a week showing that I had a massive growth on my chest which was heading towards my lungs.

“I had liquid filling up one of my lungs and I had liquid around my heart and other parts of my body and the doctor said, ‘oh this is really, really serious’ and I asked if it was life threatening.

“He said ‘I reckon you’ve probably got just a few weeks to live, so we really need to get you into the NHS because they would deal with this best, not privately’.”

Simon was waiting to go into hospital, but was in Yeovil that weekend in May 2024 when an ambulance had to be called as his breathing became so bad. When Yeovil hospital staff saw the report from the consultant, he was instantly admitted.

He recalled: “I was really, really ill for a week in Yeovil, I was on oxygen and they said to me, you've got a rare type of leukaemia and you're going to need to sign this to say that you're happy to go for chemotherapy, if you do not, we give you a lifespan of two weeks.

“My condition is called acute myeloid leukaemia with a TP53 gene mutation and there doesn’t seem to be many people in the UK that have it, but it's a very aggressive type, meaning it returns

“Even if you give someone chemotherapy it could come back in two or three months, so you need to find a cure and the only way to get that is a stem cell transplant.”

A transplant requires stem cells from a donor, taken either via blood or bone marrow. Initially no donor could be found for Simon but then a distant relative in Kent, Andrew, was contacted and he agreed to help.

It was not a perfect match, rated at nine out of 10, but it was the closest doctors could find. Simon said Bristol hospital refused the operation because they felt it was too risky, but Derriford in Plymouth agreed to go ahead.

Simon underwent the transplant at the beginning of March and has had to wait 100 days to find out if it had been successful and his blood was still cancer free.

Within the next few weeks he should find out, but he still does not know if he has weeks, months or years left to live.

Simon had been traveling via taxi to Derriford three days a week for tests, which took up most of day – that has now been reduced to once a week,

He said: “Life expectancy is quite short potentially - the longest a person has survived with my condition from diagnosis, as far as we know, is four years, unless anyone out there knows any different?

“I was in such a bad way when I was in hospital that the consultant said to me, you've got to plan your funeral and get your affairs in order.

“I was a supervisor at Live West Housing Association but I have not been able to work for a year. I can't return to work at the moment because I'm not strong enough and my immunity is not very good.

“At the moment I'm quite busy with tying up loose ends and admin at home, then later on I'll have to see how fit I am and if I can't go back to work, I've got a few community projects that I'm interested in doing, to keep me occupied, keep my mind active and to try and give me some hope for the future.”

Simon would like to hear from anyone else who is living with acute myeloid leukaemia with the TP53 mutation and their experiences. Data suggests some 3,100 per year are diagnosed with it in the UK.

Simon would also like to hear from any doctors who may have insights or knowledge about the condition.

He said: “At the moment I don’t have much information to go on - what I can tell my employers, for example, what I can plan for myself and my partner and what I can do in life?

“I feel as if I'm watching my back all the time and currently I wake up each morning thinking ‘well I'm alive again today’, so if anyone can shed any more light or information on my situation, I would like to hear from them.”

If you are willing to speak to Simon, please email him at simon.harvey10@talktalk.net 

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