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After my annual well-man check up with my GP in November 2015, I was called back twice for blood tests because of unusual blood counts. My GP finally referred me to the local oncologist as he suspected I might have a type of blood cancer called chronic lymphocytic leukaemia (CLL). The ’C’ word immediately unnerved me, and I started to google info on CLL.
I received a letter two weeks later offering an appointment 4 weeks hence! I was in a position of being able to fund seeing the specialist privately and got an appointment within two days. He advised that it looked like CLL, and from the annual blood counts thought it may have been developing for the last five years.
Emotions were high from anger. Why had I not been told earlier by my GP? It was incurable. I was likely to be on Watch and Wait, but it was a less aggressive cancer and I may never need treatment. On this occasion, I took my wife in with me which I cannot recommend enough. She listened and picked up more facts and info than I could in my shock and fear.
She attended all consultations with the oncologist. We share concerns and fears. My father died of cancer and was old school, stoic, suppressed feelings from his family right to the end, thinking to spare them pain. I promised at that time to be open to my loved ones where possible.
I had a CAT scan within a week, further blood tests and the condition was confirmed. My specialist said it was slow growing and we would check every three months for progression. He gave me a copy of the Macmillan book and a tip (too late!) to be careful of mock news on the internet.
One good thing with my plunge into the internet world was discovering CLLSA, Chronic Lymphocytic Leukaemia Support Association. A great source of facts and links to other useful sites such as the Health Unlocked Forum, Leukaemia Care and Patient Power. This not only helped me understand and order my knowledge and emotions around the disease, it also connected me to fellow CLL-ers via the Forum and CLLSA conferences. One of the things I discovered, that I should have been made aware of, was that I had a designated clinical nurse specialist (CNS) on diagnosis to help and answer my questions. Luckily the sites have answered most of my needs so help alleviate the pressure on the overworked folk of the NHS.
My children are adults, so I shared with them when diagnosis was confirmed and I had my head around the disease so I could help them understand what we faced. I am lucky to be retired and I share with close friends and wider family as necessary. It was scary at first to share, but as I have learned more of the disease, it became easier to advise people on why I could not visit them when they had illness in the house.
As the disease is progressing slowly, I have been moved from three monthly to six monthly checks. I always ask for and receive a copy of the results and my specialist is happy to answer any questions I have regarding the results. Through life I have always been a planner, facing anything if I could see clear routes, options and solutions. I feel someone above is challenging me now!
I tire more easily now so plan action days and rest days where possible. I enjoy my allotment, two days looking after grandchildren, church life, and theatre. I just need to plan well. I also try to avoid family and friends who are ill and use anti-bacterial gel; I always carry a bottle.
I have started to learn to cope with living with the unknown. I consequently feel I enjoy life more, savour the moments and experiences more. My loved ones, the forum and conferences have done more to help me adjust to Watch and Wait than any specialist appointments or conversations. That is not a criticism of the NHS; a wonderful national treasure that should be used for medical interventions. CLLSA, Health Unlocked Forum, and Leukaemia Care resources are the right place for emotional support and wisdom in my mind.
I’m not in treatment yet, close though. The journey as I say has made me value the now more. I also understand and control what I can and leave to fate and faith what I cannot influence. I feel more empowered to manage my care, but still would like more key facts, like how do I know where my nearest specialist centre and CLL specialist is?
My advice to other patients would be connect to the CLLSA, Leukaemia Care, and Health Unlocked Forum for facts and friendship, it helps!