Hi
I am 65 and have recently been diagnosed with CLL.
Luckily, I don't have any symptoms and I am physically ok. All very relatives and friends have a positive outlook but emotionally I am all over the place. I feel angry, cancer is the first thing I think about when I wake up. I don't want to get up and do the mundane every day tasks but I don't know what else I want to do. I just don't know how to live my life ( or what's left if it). How do I stop cancer defining me and live a normal life?
Hi Penman and a warm welcome to this corner of the Community although I am sorry to hear about your CLL diagnosis.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL)
But for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well (See my story)
There are a number of active members on the group at the moment so let’s look for them to pick up on your post.
Although CLL has the word Leukaemia in it, in Heamatology terms it actually comes under the umbrella of slow growing Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.
In way of some encouragement……when I was diagnosed in 1999 our 2 daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments on and off over the first 17 years but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. we celebrated our 46 wedding anniversary yesterday. I turn 70 at the end of this year and as a family we just celebrated 9.5 years since my last treatment.
We are living a great life and we continue to look forward to what else life has in store for us to enjoy…….. including going to Malta for a few weeks in May…. this can be done…….
How do I stop cancer defining me and live a normal life?
……. you have to take control and define how you live with your CLL……. not letting it define you.
Understanding this condition is important as this controls the noise that is going on between your ears.
My Consultant said my first type of NHL had to be seen in the same light as a chronic health condition (although my secind NHL was a more challenging issue)….. think of living with type 1 diabetes…… are on medication for life and if things go wrong they go very wrong very quickly……. In CLL this is just not the case and many people I have talked with on here but on another UK support platform have went years without requiring treatment and are living normal lives.
Do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than ‘talking’ with others who have walked the journey.
I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
I am always around to help more, just to chat and to answer questions.
