When Alice was told she had leukaemia, she assumed she’d been handed a death sentence, but that thankfully wasn’t the case. Here, she shares her Spot Leukaemia story.
I was 66 when I was diagnosed with chronic lymphocytic leukaemia (CLL).
My only symptom prior to diagnosis was a small lump on the right side of my neck. I noticed it after having some vaccinations for travelling to Asia, and my GP assumed the lump was a result of the jabs.
When I was then hospitalised with a stomach bug, and the lump only grew bigger, I went back to my GP. He was lovely, but still didn’t think it was a problem and thought it may have been a little cyst on my lymph node. Before removing it, he suggested I might be better having an ultrasound.
There the story progressed very quickly. It was thought I may have something a little more serious and I was referred to a Maxillofacial Consultant. He was convinced that it was nothing nasty and I was sent for blood tests. Whilst having a CT scan, and myself assuming the ultrasound had come back clear, I asked the nurse exactly what they were scanning for. I was shocked when she said they were checking to see “if the cancer had spread anywhere else.” When the blood test results returned, they revealed I in fact had CLL, but I was told it didn’t need treatment. I had never heard of CLL, but I had heard of leukaemia and thought I was going to die!
I made a point of finding out as much as possible about CLL. I joined the CLL Support Association (CLLSA), went to and spoke at a conference in Newcastle. I also had my story published in two newspapers and, just before the COVID-19 pandemic, I was in the process of starting a support group.
On 9th August 2021, it was decided that I should start treatment. My latest bloods show a further increase in white cells whilst thankfully everything else is OK. So, treatment began with acalabrutinib.
I am very optimistic and confident that I can handle this treatment. I know that CLLSA and Leukaemia Care are there to support me, plus I am lucky with my husband Tony and masses of good friends. My consultant, Dr Laura Munro, and my very special nurse, Vicky Dixon, are always there for me.
It is more than ever very important to me to stress the need for people to insist that they get thoroughly checked out even with most insignificant of symptoms. I know that if that little lump hadn’t come up on my neck, I wouldn’t have gone to my GP or given a thought to it being CLL. When the lymph nodes under my arms appeared, I would most likely have run as fast as possible, thinking it might be breast cancer. I’m supporting Spot Leukaemia as anything which helps people spot the symptoms and accept the diagnosis of leukaemia is vital.
Alice is a great example of how we need to be diligent in our self care, and not to ignore symptoms. It can be hard to be persistent with medical professionals and many of us worry about wasting their time. If you need someone in your corner to help you make your points to your doctor or nurse, then independent advocates – informal or formal ones can help you. Click to learn more about independent advocacy.
Thank you to Leukaemia Care for sharing this inspiring story.