A numbers game – age at diagnosis

Being diagnosed at the age of 27 with acute myeloid leukaemia (AML) came as a huge shock to me. I had no previous medical issues or conditions, and at that age you come to believe your whole life is ahead of you. For me it was almost a switch overnight – one minute you are young and healthy, and the next you are confined to a hospital bed feeling like your life is drawing to a close.

After being diagnosed, it didn’t take me long to feel like the odd one out in the ward. I was the youngest one there, with most around me elderly or a lot older than myself. Because of this wide age difference, it was hard then to build up relationships with those around me. This lack of conversation and friendship with similar-aged peers made me feel incredibly isolated. There were a lot of times where I felt like I was the only one going through my diagnosis. All my friends were getting married, having children and progressing with their lives. I felt robbed of the life I should have been living, and instead was spending months lying on a hospital bed not knowing if my life would ever continue. Occasionally I would seek out a conversation with someone post-illness, but the options were slim. Therefore, it was important for me to join the buddy scheme at Leukaemia Care, as I felt this would give others the opportunity to not feel the loneliness I had experienced.

When I came out of hospital, there was then the feeling of fragility, and vulnerability when seeing my friends of the same age. I couldn’t help but feel like the burden of the group. Plans had to be considered in advance to assess whether it wasn’t too much of a risk in regards to my lack of immunity. I also had to consider how far I could walk without feeling like I was going to pass out. This made it very hard to join in with the activities any other 27-year-old would be doing.

It’s very hard to explain to others who haven’t gone through this treatment how it feels after having chemotherapy and a stem cell transplant. Your body feels and acts far older than it is. Some days I could wake up and walk 20 minutes with ease. Others, I could barely manage five minutes without feeling like my legs would give in. I had lost a lot of muscle in my body over the time spent in hospital and it took a long time to develop these muscles again. I remember a doctor telling me that, for every week spent immobilised in a bed, you could lose up to 40% of your muscle mass. Well, when you have spent seven months in a hospital bed, it makes sense why I struggled so much.

Since then, I have been able to build up my strength a lot more and it is easy to forget how little I could do a couple of years ago. However, at times I do feel the strain of expectation because of my age vs the diagnosis. People expect me to be ‘back to normal’ now and able to do what I should be able to do for my age. The truth is, it only takes catching a cold for my body to regress and I find it much harder to cope with day-to-day activities when I am poorly. I have found myself now being able to accept this and know when I need to stop and ‘admit defeat’.

There is obviously never a good time to be diagnosed with leukaemia, but in my case, in January 2018 aged 76, the timing could hardly have been worse.

While I was having tests my wife, Pat, was in hospital with heart failure. I think when you get to my age you no longer consider yourself immortal and are well aware of the frailty of life. I realised that none of us is indestructible when Pat suffered a stroke at the age of 41 and underwent open heart surgery three years later.

I had been her full-time carer for more than five years, so I was well aware of her frail condition, but it was a great shock when she died peacefully, aged 77, six weeks after my diagnosis of chronic myeloid leukaemia (CML). We had been together for 46 years and through some tough times together, including my diagnosis of prostate cancer in 2007.

I think already having one cancer made the new diagnosis less shocking. Although I have found it quite difficult to understand a ‘liquid’ cancer compared to a ‘solid’ cancer like prostate. I guess being a mechanical engineer rather than a chemist might explain that.

Strangely, the distraction of having to deal with the funeral arrangements and everything else that goes with a death gave me little time to dwell on my CML. This was helpful, but I was severely affected by grief, which was the most painful experience ever.

I missed my caring role and felt empty. I lost confidence, became anxious and found decision-making difficult. My very supportive family thought I was coping, but I wasn’t. I ended up in a very dark place and accessed bereavement counselling through my local cancer care centre which proved very helpful. I finally made a conscious decision to look forward rather than dwell on the past and began travelling to visit some of my family who live overseas. I was finally managing to get on top of things. Then COVID-19 came along.

I had attended a couple of CML support group meetings in Manchester organised by Leukaemia Care. It was good to meet and share experiences with other people. Following COVID everything became ‘virtual’, and I began joining many of the online meetings organised by Jess and Prabs. These were very helpful in breaking the isolation of spending 56 weeks shielding at home alone (thank goodness I have a garden), and have been a great source of help and comfort to me during this difficult period. I have made some good friends and learnt so much.

I have also found the Leukaemia Care webinars very informative, and received help from the LC Advocacy team who were very helpful.

I have now had both vaccinations, which has boosted my confidence, but I still don’t want to be around too many people at the moment. I think that shielding has made me a bit ‘institutionalised’, and it will take some time to get back to whatever passes for normal in future.

I think that being a full-time carer for Pat helped me cope with lockdown. As a carer you are in your own ‘bubble’, focussed entirely on attending to the needs of your partner. When COVID struck I believe I was able to handle the isolation better as a result of this experience.

Being diagnosed later in life is probably no easier than being diagnosed at a younger age but you do have the experience of ‘life’ to fall back on, which in my case proved to be invaluable. I am also lucky that CML is one of the easier conditions to deal with.

One thing is for sure Leukaemia Care have been there for me throughout. I will be eternally grateful for this help and support.

Here’s to better times.