I’ve been diagnosed with CLL for a while now and am currently well. The problem is that I don’t really deal well with the uncertainty of the situation - and I get angry about the situation which is not how I normally react. I’ve been reading some of the posts, and realise just how lucky I actually am, so I guess I should be thankful rather than angry and uncertain. I know others with cancer who are dealing with it far better than I am. This is the first time I’ve ever posted and the first time I’ve been honest about how I feel about my situation.
Hi Wincheap and a warm welcome to this corner of the Community although I am sorry to see folks joining us….. but it’s good that you have opened up about your diagnosis….. it does help a lot.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL)
As you have been reading some of the treads zi wont repeat my story but the one important thing I will highlight is that although CLL it has the word Leukaemia in it, in Haematology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing and this is why CLL, SLL and HCL have a group on their own.
These slow growing blood cancers require a mind set that does not allow our uninvited squatter to define us….. we must define how we live along side our cancer.
When I was first diagnosed 25 years ago our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes yes eventually had to have some full on treatments…..but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 69 in Nov and as a family we celebrated 9 years since my last treatment in Oct. I am living a great life and we continue to look forward to what else life has in store first us to enjoy…….. this can be done.
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.
Hi David Wincheap happy New Year from the Highlands of Scotland.
Over my 25 years my various consultants and my great CNS (Cancer Nurse Specialist) often reminded me that having a slow growing blood cancer like my first incurable NHL….. and I would say your CLL is like being diagnosed with a life long chronic health condition…..
My CNS used type 1 diabetes (the she had) as an example in that with type 1 you are basically on treatment for life and you have to continually monitor the body as things can go significantly wrong…… but despite this a normal life can be lived…… compared to a type 1 diagnosis in some ways we have the better deal.
‘Talking’ with others ‘living’ with CLL would help a lot so do look at the Lymphoma Action platforms as this may help you get control of the noise between the ears.
