Susie Smith

Susie was working full-time and living her life to the full when she started to come down with repeated infections. It came as a shock, then, when she was diagnosed with chronic lymphocytic leukaemia. Over a decade since her diagnosis, Susie shares her story for Spot Leukaemia.

I was 49, teaching full-time in a school for children with additional needs, and living a full and happy life with my husband. Following a lovely holiday in Sardinia in April 2006, to celebrate our silver wedding anniversary, I suffered a string of sinus, ear and chest infections for which I was prescribed antibiotics and had blood tests done. On return from our summer holiday in July, there was a letter from my doctor asking me to make an appointment to see her. She informed me that she wanted to refer me to Haematology for help with the blood results, but she gave me no indication of what was under consideration except to say that my lymphocyte count was high and the hospital would do further tests. This meant nothing to me, and I wasn’t overly worried considering that I generally kept well with rarely a day off work.

My husband came to the hospital appointment with me only to be given the shocking chronic lymphocytic leukaemia (CLL) diagnosis. I didn’t realise anything was seriously wrong—I was just feeling run down. Cancer of any kind never crossed my mind. Reeling and scared, we returned home to digest the information in the leaflet we were given. We had so many emotions and questions running through our heads in the following weeks. Whenever I had a hot flush – was it CLL or the menopause? Thankfully, it was the latter.

Many of the children I was teaching at the time had complex medical needs and I was used to reading lots of medical reports. It took some time to realise that the text I was reading was about me. The consultant invited me to call him if I had any questions, which I did a few times, especially in the beginning. I couldn’t get my head round the ‘Watch and Wait’ theory and felt that I was being left in limbo whilst I watched and worried! More like psychological warfare! I wanted to get on with some treatment to get rid of CLL. I then read that 30% of people with CLL never needed treatment and I asked to be tested. My result showed that, without being able to be 100% positive, “… it looks like it’s going to behave itself.” That was almost 14 years ago and, apart from annual hospital check-ups, I still have CLL but have not needed treatment. I look after myself, eat well (most of the time), enjoy a few glasses of wine each week and stay fit, mostly by running. (I ran the Great North Run to fundraise for Leukaemia Care in 2008, I think.)

A good few years ago, I read a case study of CLL patients in California taking a green tea extract supplement. My consultant agreed that I could take it. My blood results have remained predominantly stable and I continue to take it daily. It was suggested that I have my annual check-up done by my GP; I tried that for a couple of years. However, the physical examination was nowhere near as thorough as the hospital examination. I feel much more confident attending the hospital.

CLL pops into my head every day, more so now that I’m shielding and I’m desperate to get outside. I retired four years ago and sadly have spent much of my time supporting my husband’s family members at hospital appointments. My father-in-law died three years ago from mesothelioma, my lovely husband died two years ago, only one month after diagnosis of pancreatic cancer, and then his twin sister died last year from ovarian cancer after 18 months of chemo. I’m doing my best to support my own Mum as well as my mother-in-law, but as I’m in isolation now, that’s another of life’s challenges. I’m very lucky to have a loving extended family and many friends who support me. Thank goodness also for technology and Netflix!

Although, as described, my retirement years have sadly been taken up with accompanying family members to and from hospital appointments and treatments, as well as hospice visits and subsequent funerals, I would like my story to reassure people that a diagnosis of CLL is not necessarily an imminent death sentence, as I thought when I first got my diagnosis in 2006. CLL is in my head every day, but I have managed to get on with my life, work full-time in a demanding job, holiday at home and abroad regularly, support my extended family and friends when they have needed me, and stay positive about most things.

GPs have a crucial role to play in spotting the early signs of leukaemia. My (senior) GP had previous experience of only two elderly patients with CLL. The available online training is a great way to give easy access; anything that can be done to help raise awareness is a good idea.

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