01 Aug 2023

Living with CLL – Alice spreads the word about symptom awareness

Night sweats, tiredness and a small lump on her neck were Alice Scanlon’s only vague symptoms when she was diagnosed with chronic lymphocytic leukaemia (CLL). And the retired local Government officer, who was 68 when she was told she had cancer, had put them all down to post-menopause and a reaction to a holiday vaccine.

Alice, who lives in Bridlington on the East coast of Yorkshire with her husband of 43 years Tony, said:

“I hadn’t felt ill in any way but after some travel vaccinations for a trip to the Far East in January 2018, I had a bad reaction to part of the MMR jab. The practice nurse didn’t give me the second injection, she thought that I probably had immunity, either from previous exposure or a vaccine.

“We went off on our trip and whilst we were away, I noticed a small lump on the right side of my neck. When we returned home, I went to see my GP who thought it was probably a reaction to the vaccine which had caused a raised lymph node. He didn’t think it was serious, particularly since I wasn’t feeling ill. He suggested that if it didn’t go or changed in any way, I should go back. After a few weeks it was still there. The GP wondered if it was a cyst that needed draining. But said he wanted to get an ultrasound before he drained it. I got to see someone immediately for the scan at the hospital. They were concerned enough to send me to a maxio-facial consultant but the lovely consultant said that there was nothing to take a biopsy from. He referred me for a full blood count test and a CT scan.

“The reply terrified me”

“I had the bloods done but fear set in when I went for the CT scan. I innocently asked what they were looking for. The reply terrified me! I was told that they were looking to see if the cancer had spread. At this point, no one had mentioned cancer to me. I was distraught. I was very soon referred to see a consultant who explained that whilst I did not have myeloma as first thought, I did have chronic lymphocytic leukaemia. I didn’t hear the first two words… just leukaemia. I thought that I was going to die. But CLL was explained to me and also that I didn’t need any treatment.”

Alice lived ‘fairly normally’ for three years with regular blood tests. But in August 2021 she was told that she needed to start treatment because her white blood cells were increasing rapidly. She was prescribed a cocktail of drugs which thankfully reduced her blood counts to normal ranges and put Alice in partial remission. She remains on the drugs to this day and has regular blood tests.

Raising awareness of symptoms

Alice knows she’s incredibly lucky to have had had such success with some of the least gruelling treatments for leukaemia. But she’s keen to spread the word to others about checking out symptoms: “If I had ignored that raised lymph node, it might have been much longer before I was diagnosed. My lump was on my neck but had it been under my armpit or in my breast, I would have run very fast, thinking it was breast cancer.

“I now feel really well, not overly tired but I know that my CLL will be with me for life. Hopefully it can be controlled enough to allow me to live my life with my husband normally. Covid wasn’t easy as we had to shield for almost a whole year.”

Hopes for the future

“Our close friends shopped for us and we existed with early morning walks and working in our garden. We are still very careful, we wear masks in shops and anywhere else we feel necessary. We have recently began travelling again and during time in airports and on flights we wear FFP3 masks and keep away from people.

“I think that my treatment will continue as it is now unless anything changes. My hope for the future is that a total cure for CLL and all blood cancers will be found very soon. I would urge everyone that however simple their symptoms to please get medical checks done. So many symptoms can be brushed off as minor things. I wonder if I had had CLL for much longer. I had really drenching night sweats, which I put down to late menopausal symptoms. I was tired but thought that I was just getting older and I had been too busy.”

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