Alice was diagnosed with Chronic Lymphocytic Leukaemia in 2018.  She joined RareCan to gain and to give knowledge.

I was diagnosed in late 2018 with Chronic Lymphocytic Leukaemia (CLL)

Briefly I’d had some travel vaccinations for a trip to the Far East in February that year. Amongst the vaccinations I was given MMR, I had a reaction to the first German Measles jab and the nurse thought I probably had immunity from childhood. I wasn’t given a second dose. Fast forward to June 2018 when I contracted a tummy bug, this was serious and resulted in my being hospitalised due to dehydration.

Shortly after this I noticed a small lump on the right side of my neck. My GP thought it was nothing to worry about, thinking that it may still be a lingering reaction to the MMR. By October it was still there and my GP wondered if it was perhaps a cyst but suggested an ultrasound before draining. Then it all began! The radiologist thought I may have Myloma and referred me for further examinations. These showed nothing so full blood counts were ordered and an appointment made with a haematologist.

Good news she said, not Myloma BUT you do have Chronic Lymphocytic Leukaemia, which I had never heard of. I didn’t hear the first two words and said Leukaemia, that’s cancer, am I going to die?
I was in total shock and it wasn’t until I calmed down and spoke to my Clinical Nurse Specialist that I began to understand. I was told that I would be monitored regularly and didn’t need treatment yet.

I get regular support from my medical team and started treatment in August 2021 after my white cell count began to increase. I am also blessed with my wonderful husband of 42 years, a good family and friendship circle.

Just as the pandemic was starting I was in the early stages of starting a support group locally to help people newly diagnosed. When I was first diagnosed, I needed to speak to someone who actually had CLL and not just medical knowledge of it. I joined CLLSA and attended a conference, I joined HealthUnlocked, Blood Cancer UK and Leukaemia Care.  

When I saw RareCan advertised, my initial thought was that I could gain and give knowledge.

I hope research driven by RareCan will add to anything being done already.  It will raise more awareness for more people.

The more research is done for rare cancers, the more chances we have of finding cures.