ANSAs 2019

Life after my transplant for AML - Ivor’s story

July 21, 2023

After experiencing periods of extreme tiredness, Ivor was diagnosed with blood cancer AML (acute myeloid leukaemia) and was told he needed a stem cell transplant.

This took place at Southampton General Hospital in 2015, using stem cells donated by a stranger based in the UK. Thankfully Ivor’s transplant was a success, and earlier this year he was able to meet his donor, Mark, for the first time.

As Ivor approaches his 8th transplant anniversary, he reflects on his experience and his recovery.

  • What would you say were the biggest challenges you faced during your recovery from your stem cell transplant, and how did you overcome them?

The changes to my life which impacted me most were the knock-on effects of long-term hospital stays and the need for a high degree of isolation.

Since the Covid pandemic the negative effects of shielding are better and more widely understood. Seemingly endless days in a small hospital room, with very few visitors, had a depressing and debilitating effect. The loss of contact with my family, friends and colleagues, and my work, coupled with the lack of exercise, fresh air and sunlight, were difficult to endure.

Although patients in my then-position (neutropenic) are usually confined to their rooms until it is considered safe for them to walk the few yards up and down the ward corridor, I had a very understanding consultant who allowed me to leave the hospital via a quiet side-entrance so that I could spend the afternoons walking in local woods, provided I wore a mask and avoided contact with other people. This saved my sanity and put me in the right frame of mind to aid my recovery.

I have the good fortune to live in a rural area and when allowed home to continue my recovery I was able to go for walks without encountering others. Two years elapsed before I was able to go to a centre of population.

  • What advice would you give to someone who is about to undergo a stem cell transplant or is in the early stages of recovery?

One of the most common things that family, friends and hospital workers say to cancer patients is ‘Stay positive’. As a patient I heard the phrase so often that it became annoying. It is easy to say to someone with a life-threatening illness, but not so easy for them to do. Especially in cases where the illness is totally debilitating.

However, for a reason that I am completely unable to explain, I believed from the day of diagnosis that this disease wasn’t going to kill me, and this gave me a positivity that I am sure had an impact on the outcome of my treatment.

So, I can do no better than join all those others in saying, ‘If you can, stay positive. It will improve your chances of recovery.’

  • What has been the biggest change in your life since receiving the stem cell transplant?

My diagnosis and treatment resulted in my retirement from work earlier than I had planned, and it is difficult not to conflate the two in my memory. But I was past state retirement age and I would have retired soon anyway.

The effects of the illness and the treatment have reduced over time. Immediately after the transplant I had to live life in a cocoon, take lots of medication and be very careful about what I ate. This lasted for about two years.

Now, after almost eight years, I live a completely normal life with no restrictions (although I did have to take extra care during the Covid pandemic). However, my own experience has made me more conscious of the difficulties of others during ill health and given me a constant awareness of the people and organisations without whom I would not be alive today.

  • What role did your family and friends play in supporting you through the transplant and recovery process?

During my time in hospital the number of visitors was restricted, so just one or two were designated visitors. You would have to experience a long hospital stay to understand fully just how essential a support mechanism is to your wellbeing, practically and emotionally. Without the support I had, I don’t think I would have been able to maintain a positive outlook and the sense of isolation would have been overwhelming.

Thanks to the mobile phone and computer I was able to stay in remote contact with those who couldn’t visit me in person. And, on good days, I was able to do some work for my employer (who supported me throughout) which helped me feel that I was not completely disconnected from the world outside the hospital. This had a massively beneficial effect.

  • What is your experience of volunteering at Anthony Nolan?

Although I knew of the Anthony Nolan organisation prior to my diagnosis, the need for a stem cell transplant made me much more conscious of the work it does. After some setbacks during my recovery, which took a couple of years to sort out, I felt able to take on some voluntary work.

My obvious choice was to try to help, in some small way, those who had helped me, and I offered to become a member of the Patients and Families Panel. I was involved in a number of specific feedback projects before seeing an advert on the Anthony Nolan website for someone to join the Grants Panel. I'm now the longest-serving member.

The cases that come before the panel are harrowing at times and demonstrate the devastating financial and social effects that blood cancer can have on individuals and families. But I have thoroughly enjoyed working with several Anthony Nolan staff who have been panel co-members and have learned a great deal about the wider nature of Anthony Nolan's work, over and above the finding of stem cell donors.

  • Looking ahead to the future, what are your hopes and goals for the next 10 years, and how has your stem cell transplant influenced these aspirations?

In some respects the disease has taught me not to plan ahead, at least, not with the confident belief in a certain future that I once held. And that’s not a negative statement. I have learned to appreciate more each day and what it contains, and to be more conscious that tomorrow is never guaranteed.

I do some volunteering for a couple of charities, including Anthony Nolan, and take opportunities to experience new things when I can, but that’s no different from what many people do when they have retired.

My belated meeting with my stem cell donor was an important event post-transplant and he and I are hoping to engage in a project to encourage more people to register as donors so that they can, potentially, save the lives of future patients.

Ivor received a commendation at the 2019 Anthony Nolan Supporter Awards for his contributions of time, experience and advocacy of patients as a member of the Anthony Nolan Grants Panel. A position he is still committed to today.

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