By Nigel. A Member of the Derriford CLL Support Group and a person with CLL
Having not been near a doctor’s surgery for nigh on 30 years I had a should injury in August 2017 that wouldn’t seem to heal. That prompted me, reluctantly, to seek help.
I told the doctor that even “Taking ibuprofen like smarties didn’t seem to help”. He gave me an injection into the joint, which solved the problem. But he was concerned about kidney damage from so many pills, so ordered a blood test.
Fortunately that test showed my kidneys were OK. But there was an anomaly with the blood test. Do another one.
Two weeks later – “Have you had any infections recently?”
“Well let’s do another blood test.”
Two weeks later. “Blood test seems to show Leukocytosis. We need to do another test.”
No explanation of what “leuko-whatever the heck” is, so of course I Googled it and panicked.
Two weeks later. “Test confirms you have CLL, a form of Leukaemia. A blood cancer. You can look it up. You are at an early stage, and it is usually slow in progressing. So don’t worry about it. If it’s any comfort, people tend to die with CLL rather than from it. You should have a good few years, we just need to keep an eye on it.”
What followed was six weeks of anxiety, bordering on depression. I Googled everything I could find on CLL. Whilst it is true that CLL very rarely kills people directly, it does have many other effects on other diseases and can be quite debilitating on its own, as the cancer progresses.
Six weeks later I did get to see a Heamatologist at Birch Ward Derriford, who did another blood test and confirmed, face to face, that yes indeed – I did have CLL. But he was a bit more patient and obviously more knowledgeable than my GP.
“You will be on what we call – WATCH AND WAIT. It is too early to do any treatment yet, so we will advise your local surgery to do regular blood tests and we will monitor it closely.”
He answered my questions. He also gave me a book by Macmillan cancer care explaining the disease and the likely futures.
That at least did settle some of my worries.
I was also pointed towards the CLLSA. The website, the support forum, and the videos of experts talks, all help to shine a light on the disease.
I get my blood counts done every six months. The disease is indeed progressing and it is pretty slow.
Since then I have joined the Derriford CLL Support Group where we meet to share our stories of our cancer journey. This has been a superb channel to get advice and guidance.
We are putting together a “Buddy Scheme” so that people can call someone and talk through their problems, the results of their tests, how any treatment is going and anything else that might help.
IF you have CLL and feel that you need to talk to someone and a family is not appropriate or available, contact us:
Take Care of Yourself.