I was diagnosed with CLL in June 2011 with a count of 31 at the age of 53.
Like many, it was a chance discovery. The tests were intended to confirm a kidney infection. Otherwise, I felt, and had felt very well. I still do.
Initially the medical approach was, "It may be an error we will re-test" 'What is possible CLL?' I asked, having read the report. An explanation followed.
By the time CLL was confirmed I had pottered around the web and was not surprised to learn I had not fallen foul of a typical cancer. You know the type...
CLINICIAN "Mr. X, I have some good news and some bad news."
ME "What's the good news?"
CLINICIAN "You have three days to live."
ME "Jesus! What's the f#$*ing bad news?"
CLINICIAN "You should have been told two days ago."
Oh no, nothing straight forward. I have a cancer that may kill me within 12 months no matter what treatment I have, or, I could die of old age never having treatment, although my life will probably have been shortened. Oh yes, and anything in between.
ME "Oh, that's good news... I think. Actually, I don't know. Do I? What do you think? Oh, you don't know either. In that case I will have to wait and see."
I have always had excellent health, I have always been able to overcome adversity. I failed very badly once and I have not repeated it since. I kneel before no god, and no one will kneel before me. I do not take kindly to being dictated too, by anyone, or anything. I am not pleased!!
That was my reaction.
There have been a few occasions in my life when I thought I would be dead in a second or so. I know I am not afraid to die. I was not angry, I did not ask "Why me?" I did not shout "It's not fair!" I was not bitter.
My thoughts were for my family. How do I tell my wife and two (adult) daughters I have cancer? They know two of my sisters were killed by cancer. They know my third sister was lucky to survive it. They know my wife's family has a history also, and all are dead. We are very close. My girls still hold my hand when walking about.
What will happen when I tell them? Their belief in my indestructibility will be shattered, their expectation of my continuing will be destroyed, and for what? There is nothing they can do. They will fret and be fearful every time I sneeze. They will constantly wonder if I am alright in response to otherwise insignificant events.
I will not tell them. My place as a husband and father is not to expose my family to such pointless distress. Not to mention the shock of learning the truth. Their sadness and fear will make no difference. I can easily save them all that.
My tears dry. I will tell them when I can no longer hide behind silence. I am at peace and content.
15 months latter I develop Neutropenia. Whilst in hospital, when my wife was visiting, some bloody doctor opens her mouth before engaging her brain. Her expression betrayed her realisation. My outward response was polite and understanding. Inside, I was ready to rip her stupid head off. I only stayed for a day or so, my count increased and I had repeatedly declared I felt fine.
Now my wife knew the truth, my daughters would have to be told.
Don't ever get cancer. Sooner or later, you will have to tell your children. For the first time in my life, I knew what fear was. When I think about the expressions on my daughter’s faces...
I visit the consultant (in Somerset) every 3 months. My count goes up then it drops back down. Then it goes up. It was at 47 in June 2012. Next week, it will be what it will be.
I am not going to stop eating curries because they contain something people with CLL should not eat. I am not going to sell my motorbike for fear I suffer an injury that leads to an infection that kills me. I am not going to stop kissing my dog in case I catch something.
I will take responsibility for my choices and there consequences (my family agrees), and If I am to die at the hands of my cancer, I will look my death in the face and I will smile. My death will ensure I am free to walk the path I must follow and for that, I am grateful.
Many people are frightened of people with cancer. Give them your support and your strength, for they are weak.
When people say "I am so sorry, how awful, how do you cope?" Tell them this...
"Omeba die, people die, mountains die, planets die, stars die even galaxies die. Some live for minutes, some for billions of years, but no matter who or what you are, life is always fatal.”
People beat cancer.