"Hopefully one day people will no longer have to go through what Ian, Rachel, Imogen and all our family went through."

24 Jan 2025

A larger-than-life character: Ian’s story

“My brother-in-law Ian was a very fit man, and it was a terrible shock when he became ill,” said Mary Thompson, 55, who lives in Hove, West Sussex and is a freelance language teacher, proofreader and award-winning writer.  

“In December 2018 he had told his wife, my sister Rachel, that he didn’t feel right. But he didn’t take it any further and only mentioned it once, so she put it out of her mind. Then in June 2019 he went for his regular checkup – he’d had prostate cancer two years before. He was told that his white blood cells were low and that he needed a bone marrow biopsy, which he had at Shrewsbury Hospital near where he lived in Llanfechain the following week.” 

Ian was told he had myelodysplastic syndrome (MDS) which is a rare type of blood cancer. It can stay benign for years but can sometimes develop into leukaemia. Sadly, this was the case for Ian and in September 2019 he was told he now had acute myeloid leukaemia (AML).  

Doctors said that Ian might be able to have a bone marrow transplant and a 10/10 perfect match was found. However unfortunately Ian had such a rare type of mutation that a few months later he was told that there was no point in the transplant going ahead.  

Ian had the TP53 mutation which is present in approximately 5% to 10% of patients with AML*, posing a significant challenge in leukaemia care and treatment. Despite ongoing efforts, making a treatment breakthrough for patients with this mutation remains an uphill battle for researchers and clinicians.  

“My sister Rachel was shellshocked,” said Mary, “and I remember feeling the same. Ian was such a huge, larger-than-life character, who was extremely healthy. He skied, paraglided and played badminton regularly, and he was also a very competent amateur musician who was in the middle of an MA in music. We simply couldn’t believe that someone like him, who was living such a rich, fulfilling life, could suddenly get sick.” 

Ian was given multiple blood transfusions, platelets and chemotherapy sessions.  

“His first chemo session was particularly difficult because he was given very strong chemo that didn’t work. But on the whole, he coped really well, especially given the fact that he was ill throughout the Covid pandemic, which meant that visits were limited. This was very hard on us too. I was my sister’s support during the time, and we were just stuck in our homes during lockdowns, so it made everything extremely intense. Rachel said to me that no one really understands unless they’ve been through it. I write fiction as a hobby and I wrote a flash fiction about Rachel’s experience, which was shortlisted for a national competition in 2021. It was a way of dealing with all our feelings.” 

Nothing but X 

When on the brink of her new normal, people offered advice, practical tips they knew would help, tips she could have read in books or online. If only she’d wanted. 

‘I am your manual,’ they said. ‘Your handy little guide to death. Hearing is the last sense to go, you know.’ 

But what she longed for was the hoot of a barn owl on a Welsh hill at dawn, the gentle contracting of a feline claw or a hamper overflowing with Prosecco, Manchego and sea-salt crackers from a village in Devon, with a handwritten note that said nothing but X. 

After just over a year of treatment and multiple periods of time in hospital, on 22nd December 2020 Ian died at the age of 62. 

Ian died just before we entered a lengthy lockdown which meant that his funeral could only be attended by a few people. Rachel and her daughter, Imogen, who was only 16 at the time, really struggled after his death and have found it very difficult to adapt to life without him. Imogen has just started university and she misses her dad terribly. It’s an ongoing struggle for all of us but particularly her. In the summer Rachel and Imogen moved from Wales to Oswestry in Shropshire, and that big change is slowly helping them to move on.” 

Mary has now decided to run the 2025 London Marathon in aid of Leukaemia UK and in memory of Ian.    

“I am so proud that my sister Mary is running the London Marathon in memory of my husband, Ian who died from leukaemia in Dec 2020,” said sister Rachel. “She is running for such a good cause and I’ll be there supporting her all the way!”  

“Imogen is going to be 21 the day after the Marathon (28th April),” added Mary, “so I’m hoping we can celebrate her birthday all together in London. Ian had a genuine zest for life and he still had so much more to live for so it was desperately sad that he died while still in his prime. It will be my fourth marathon and I am pleased to support Leukaemia UK and will be thinking of Ian while I run. Hopefully one day people will no longer have to go through what Ian, Rachel, Imogen and all our family went through.” 

Mary Thompson is fundraising for Leukaemia UK 

 

* Shahzad M, Amin MK, Daver NG, Shah MV, Hiwase D, Arber DA, Kharfan-Dabaja MA, Badar T. What have we learned about TP53-mutated acute myeloid leukemia? Blood Cancer J. 2024 Nov 19;14(1):202. doi: 10.1038/s41408-024-01186-5. PMID: 39562552; PMCID: PMC11576745. 

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