How is your memory? Can you remember what you did yesterday? A week ago? My memory is terrible, but I can recall ‘that day,’ and I bet you can too…
After my annual well-man check up with my GP in November 2015, I was called back for blood tests due to unusual blood counts. My GP finally referred me to the local oncologist as he suspected I might have CLL. The ‘C’ word unnerved me, so I started to Google for more information.
Two weeks later, I received a letter offering an appointment in four weeks’ time. Luckily, I was in the position to fund a specialist privately and had an appointment in two days.
The specialist advised it looked like CLL and thought I might have been developing it for the last five years.
Emotions were high from anger. Why had I not been told earlier? I was likely to be on Watch and Wait and told I may never need treatment. I’m thankful I took my wife to my appointment; she listened and picked up more facts than I could in my shock and fear.
Within the week, my diagnosis was confirmed. My specialist and I would check in every three months and he gave me a tip to be careful of mock news on the internet (too late!).
We all react differently to being told we have chronic cancer. I always want to have as much information as possible.
One of my life maxims has been ‘If you think knowledge is expensive, try ignorance’. That’s why I decided to join Leukaemia Care and CLL Support; they are free and provide quality information and support – so why not? These, alongside Health Unlocked and Chronic Lymphocytic Leukaemia Support Association (CLLSA), I was able to understand my diagnosis, and emotions and connect to fellow CLL’ers.
Fast forward to Summer 2018, I needed treatment. Thanks to Leukaemia Care and CLL Support, I knew of the trials and treatment options available to me. I applied and was accepted for the ibrutinib arm of the FLAIR trial. I started treatment and within three days, my swollen lymph nodes in my neck returned to normal. In a year, my bloods have returned to normal ranges and have been the same for over four years.
I also went to my local Leukaemia Care Support Group, met the great Donna and made friends with those who have a similar experience. I became the Chair of CLL Support, and we have been working closely with Leukaemia Care. At CLL Support, we have achieved a lot in the past four years. So as I sign off I ask, is there something you can do to help our community?
Perhaps consider making a donation or joining a charity as a member or volunteer. I assure you, you will get more out than you put in! As I step down, I will certainly miss the calls, companionship, and working together to make a difference. Stay well, safe and happy.
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