Christopher, 44, Chronic Lymphocytic Leukaemia (CLL)
I had been feeling more tired than usual. The lymph nodes running down the left hand side of my neck were enlarged and I was having repeated infections. Following a visit to my GP, I was referred to a head and neck specialist at University College London in November 2008. Three days before my 40th birthday I had an ultrasound and CT scan and a few weeks later I had a biopsy of one of the lymph nodes in my neck. In the first week of 2009 I was telephoned and told I had a type of lymphoma, which was not curable but treatable – but on my first clinic visit I was told that it was actually Chronic Lymphocytic Leukaemia. Further along the line I had a bone marrow biopsy to see how much the leukaemia had infiltrated my bone marrow and I was diagnosed as Stage A.
What did you think/feel when you were diagnosed?
I felt numb for the first six months after my diagnosis and I really felt the need to wrap myself in cotton wool to keep the rest of the world away. I think it was more of a survival instinct rather than depression as I quickly began to realise that I was being leaned on heavily for support from my family/friends. I had a huge sense of my own mortality and an incredibly heightened sense of nature and the good things around me.
How did the people around you react?
I felt disappointed by the reaction of family/friends but 4 years on I understand that it is more to do with ignorance regarding CLL. Friends have said they thought ‘it had gone away’ or that ‘it is not really an illness but a condition’. The biggest problem for people since I have not been treated is that they cannot understand why and think therefore that it must not be that serious. It was also hard being expected to support others through my own diagnosis! My partner, Paul has been my rock through the whole journey and on stormy days I have clung to that rock with all my might. I don’t know what I would have done without that steadiness in all the chaos.
What treatment did you have? I have not been treated to-date and am at the ‘watch and wait’ stage. Treatment for CLL is not started until it is deemed necessary to intervene. The reason for this is that the current treatments will only put the leukaemia into remission for so long; it will return at a later stage and ones immune system will eventually become immune to the drugs. If this stage is reached a bone marrow transplant could be considered.
How did you get involved with Shine? I can’t remember to be honest; I think I completed their on-line survey last year! I have had some good evenings with the Shine crowd. There is a good balance of being able to have a good laugh and talk about cancer without feeling you are making a fuss.
How do you feel now about your experiences? It is true time is a great healer and I know I am lucky to have had that time. I think it is human nature for life to just carry on, although this can be difficult when you are living with an invisible illness.
If you could give one piece of advice to yourself before your diagnosis what would it be?
It’s a cliché but ‘don’t sweat the small stuff’.