02 Nov 2023

‘I remember saying: “I’ve got leukaemia or something, haven’t I?”’

Kay Cutting had been a nurse for over 45 years, working as a midwife, a health visitor, and at senior management level in the NHS, when she began to experience unexplained bruises and tiredness. She knew these were signs of leukaemia but, despite her medical knowledge, didn’t put the picture together until another symptom cropped up.  

My second husband Alan and I had only been married a year when we got the diagnosis,” said Kay, 62, who lives in Seaham, County Durham. “We were eventually married in 2021 after having to cancel and rearrange our wedding three times because of Covid! On honeymoon in Madeira, one night when we had been out for dinner I got undressed for bed and Alan said: “What on earth have you done to your leg?”. My entire left thigh was covered in small purple bruises which had not been there before we went out and there was no explanation whatsoever. I remember saying: “I’ve got leukaemia or something, haven’t I?”.  

“At the time I think this was a bit of a throwaway remark although I knew the bruising was unusual. I had intended to go to the GP when I got home, but we were just coming out of Covid and it was still difficult to get an appointment at the time. I didn’t think the GP would take it seriously – so I let it drift. Apart from that I really didn’t have any obvious stand-out symptoms, although I had decided to reduce my hours as the shifts were quite long and I had been getting very tired – now I know why!

“Then I started having chronic severe headaches, and went to my GP. He asked me to keep a headache diary and took a blood test. I was called back two weeks later. I went in thinking he was going to give me medication for migraine, but I came out with an urgent referral to the blood cancer clinic. Going home to tell my husband and my son was incredibly difficult – my husband went to pieces. I was shocked, but as a nurse I know what questions to ask and I didn’t panic.  

In retrospect there had been other previous clinical signs. Over the previous two to three years, every time my blood had been taken for whatever reason, my lymphocytes had been high. I remember a GP ringing me a couple of years previously and asking if I had lost weight or was having night sweats, which I wasn’t, so it was never followed up. I had bloods taken twice in A&E following skin reactions to my first two Covid jabs, and my lymphocytes were high but of course this was thought to be linked to an inflammatory response. 

Kay went to her haematology appointment at The Phoenix Centre at Sunderland Royal Hospital and had multiple blood tests taken. She went back three weeks later for her results and, on 14th June 2022 (her late mother’s birthday) at the age of 61, it was confirmed that she had chronic lymphocytic leukaemia (CLL) 

It sounds crazy, as we had just been told that I had an incurable blood cancer, but we were almost relieved that it was CLL and nothing more aggressive,” remembers Kay. I did not need any treatment and was placed on watch and wait, which meant I would have regular reviews at haematology, and I was given a hotline to the clinic if I was worried about anything.  

I also agreed to take part in a fiveyear research programme into CLL. I wanted to do this because ongoing research can lead to developments in understanding disease progression and treatment options which will hopefully help other people. 

Kay, who now works as a Forensic Nurse Examiner alongside the police, is focusing on enjoying life with Alan, her son, Alan’s two daughters, and their combined four grandchildren. She is totally open about her diagnosis, sharing it with all friends and family and ensuring they understand exactly what CLL is.  

“I didn’t want people to hear anything through the grapevine and not know what to say or do or feel awkward so I talk openly about it,” says Kay. “Not everyone would take this approach, but it works for me. I am lucky to have a supportive family and a lot of good friends – some of whom I have known since childhood. 

“I get really tired at times, despite working part time, and we have to manage that fatigue. I rest if I need to and we work around it. My husband and I decided to join a local hotel spa, which has a good gym, a swimming pool and spa facilities, as a way of keeping fit and relaxing together. We have always enjoyed our holidays together but we have ramped them up a bit now – our attitude is that we don’t know if or when things will change, so we have to get through our bucket list of places we want to see. We are forever planning the next holiday!  

“I also make sure I spend quality time with friends and family. We have four grandchildren and we help with childcare every week – it’s exhausting but fun! I hug them extra tight these days. It’s amazing how a diagnosis such as this focuses you on what is important. 

“My hope is that I will remain stable for the rest of my natural life staying on watch and wait. If things escalate then I will deal with it then. I think anyone with a blood cancer diagnosis including myself will have dark thoughts at times, that’s normal, but I won’t let it define me. I have far too much to look forward to and to do. I want to see my grandchildren grow up and get married, and maybe be lucky enough to meet my great grandchildren.  

“I would advise others that if they have signs no matter how small, such as fatigue, night sweats, weight loss, or unusual bruising, then don’t hesitate to see your GP and insist on a blood test.” 

Read more stories from people affected by leukaemia.

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