When I was 51, I started to feel ill all the time. I had a constant cold, respiratory-type viruses and I was constantly tired. I had a lot on my plate; I was travelling 60 miles each day to work at Hampshire County Council, and I was also caring for my elderly mother following a stroke. But I felt like there was something else going on. My doctor repeatedly told me these were just typical signs of the menopause, and I was sent home, once with the offer of antidepressants.
It took three more years and countless trips to the GP before I was finally sent for a full blood count test in 2007 and was told I had chronic lymphocytic leukaemia (CLL). It was a devastating shock. I had had breast cancer earlier in my life, so to be told I had cancer again was just awful. I wasn’t sure how I was going to cope. I had also just taken early retirement, and I couldn’t help but wonder if an earlier diagnosis might have changed that decision.
However, what followed was a very different experience from my previous cancer diagnosis. CLL is not typically treated immediately, and the standard approach is “watch and wait” while undergoing regular monitoring and tests. This approach is taken to avoid the side effects of treatments for as long as possible.
But to be told I had cancer and to be left in a strange limbo felt more like “watch and worry” to me. The mental toll of that waiting period was immense. Every hospital appointment, every blood test, felt like a countdown. I lived with constant uncertainty, and anxiety was part of my daily life.
In 2012, my mum passed away, and my eldest sister was diagnosed with Alzheimer’s, and that additional trauma and stress took another immense toll.
In 2017, I was told my disease had progressed and that my bone marrow was 96% infiltrated with leukaemia cells, and I began six months of immunochemotherapy.
It was brutal – my immune system was so weak, and I needed five blood transfusions due to anaemia. Throughout my treatment, I was already getting practice in living a restricted life and avoiding crowds. Then, in early 2020, just as my blood results were finally getting back towards a normal level, along came COVID.
This led to the isolation I was experiencing becoming even greater. Still to this day I feel anxious if I feel there are too many people around me. I no longer use public transport and avoid crowded spaces like cinemas and theatres.
What I think a lot of people don’t understand is that my leukaemia cannot be cured –it can be monitored and treated, but I will always have to live with it. The mental toll that takes cannot be overstated; it’s constant.
However, I do try to enjoy life and take steps to improve my wellbeing. In 2019, I adopted Digby, a rescue dog who became my treasured companion and helps me get outside.
We now volunteer with Pets as Therapy, visiting rehabilitation wards. It’s deeply rewarding and helps me feel connected again.
I feel very lucky that I have remained in remission, but I also feel passionately that there is more that can and should be done to support leukaemia and all cancer patients with not only their physical health, but also their mental wellbeing.
During 2022, I volunteered to join Leukaemia UK’s patient experience advisory panel. The group aims to bring together people who have experienced leukaemia to advocate for leukaemia patients with Government decision makers.
That’s why I’m backing the Daily Express campaign that all cancer patients should be offered a holistic needs assessment, so they can have a personal care plan that recognises the mental impact of cancer diagnosis and treatment.
This wasn’t something I was offered during my treatment, and I think it would have had a hugely positive impact throughout my treatment.
I think this is so important for chronic leukaemia patients specifically, as there is no cure for this illness, and I want to see the needs of leukaemia patients addressed in the upcoming National Cancer Plan.