Hello everybody, new member here
I’m English, 44 years old and currently live in Switzerland but needed to find an English speaking forum.
So, diagnosed with Chronic lymphocytic leukaemia (CLL) yesterday afternoon and had absolutely no inclination what-so-ever that there was anything wrong with me. My immediate thoughts were and are of my wife and children.
The last 20 hours or so have been an absolute whirlwind and rollercoaster of emotions, I have no idea whether I’m coming and going. I’m usually a positive person but this has hit me like a Tsunami and, if I’m honest, it hasn’t properly sunk in yet. Once it has sunk in and I’ve gone through the acceptance and the feeling sorry for myself phases, I’m likely to start cracking jokes about it. That feels like a millions miles away today however.
My blood test yesterday has been sent off to a lab for more tests to see where I am, but I won’t know anything until the middle of next week, so its watch and wait for now.
I belong to a few social forums and below is an edited version of something I posted earlier this morning which sort of sums up how I feel. Reading through it again it is actually quite negative but was how I felt at the time. If there are a few erroneous statements on there please forgive me, I am still educating myself.
For those of you who have gone through this, please, how to I get through the next days and weeks? When does acceptance hit? How do I explain this to my children?
'Went to the doctor yesterday afternoon for a routine check-up. As normal I arrive about 15 minutes beforehand, they take a blood sample and I go and sit in the waiting room while it is analysed.
The doc calls me in and I expect the usual questions about diet and wellbeing, to be weighed and have my blood pressure taken. I had already resigned myself to being prescribed pills for high blood pressure as this has been on the cards for quite some time.
Instead I am diagnosed with Chronic lymphocytic leukemia (Chronic lymphocytic leukaemia (CLL)). I actually had to ask her to repeat herself as I thought I couldn’t have heard her right. BOOM. You have cancer.
This was a complete bolt out of the blue. I’ve had no symptoms, I feel absolutely fine, apart from the blood pressure and being a bit overweight I am physically fine. I still play football and planned to do another half-marathon next year as I hadn’t done one for a couple of years. I haven’t even had a sick day off work due to illness since pre-COVID.
As far as cancer goes, Chronic lymphocytic leukaemia (CLL) is not the worse. It is cancer of the bone marrow and cancer of the blood. It is a slow progressive cancer but it has no cure, so it is a death sentence. If I look after myself, have regular tests and we treat the symptoms as and when they arrive, I should have another 10 good years. Ok, 10 years, but I’m only 44. Come on doc, I can do better than that surely!
She was talking about it some more, and whilst I get by with the language, German of course is not my mother tongue, I was listening but not really listening if that makes sense. From what I can understand, my bone marrow is currently producing mutated white blood cells as well as normal, healthy white blood cells which fights off infections and diseases in the body. As the cancer slowly progresses and more mutated cells and fewer healthy cells are created, my body will be able to fight infections less and less until I eventually succumb to an illness or infection, whatever that may be. Ironically, it seems it won’t be the cancer itself that kills me.
My wife knows, I told her a few hours after I got home but apart from her and this post, I haven’t told anyone else. I have no idea how to tell my parents and God knows what I will say to my children (13-year-old twins).
As you can imagine, my head and my emotions are all over the place. I haven’t slept and spent all night contemplating ‘what next’? In the grand scheme of things time is on my side, I’m not dying next week, next month or next year – not from this anyway. But I have so many questions. Do I spend however long I have left working every hour God created to earn as much money for my family as possible before I shuffle off or do I spend as much time with them as possible? Do I now live frugally, only buying what I need to live and not treating myself to anything, or do I try and enjoy myself – do I write a bucket list for example? Aaaarrrrrrgggghhhhhh….
I don’t know what to expect by writing this, I guess I’m just ranting and getting it off my chest. I’m going to find some Chronic lymphocytic leukaemia (CLL) forums and post on there too, ask how people coped in the aftermath of their diagnosis. Has anybody here been diagnosed with the ‘Big C’ in whatever form? How did you cope in the first days and weeks, how did you tell your family, friends and employer?’