Hello, a CLL endurer

Hi rimshot  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 I understand this journey rather well as I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable, slow growing but treatable type of Cutaneous T-Cell Low-Grade Non Hodgkin’s Lymphoma (NHL)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive Peripheral T-Cell NHL was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges.

You may not know this but although CLL has the word ‘Leukaemia’ in it, in Haematological terms it actually comes under the umbrella of 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.

There are a number of members on the group at the moment so let’s look for them to pick up on your post.

I would also recommend you also check out Lymphoma Action.

Lymphoma Action is the main UK Lymphoma, CLL, SLL and HCL 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.

Thanks Mike, all good info and very much appreciated.

Hi Terence,

Thank you for sharing this. I'm also new here myself. 

I was diagnosed with CLL this year in Jan and started chemo in March. It was only last week I experience anxiety of the first time. I believe its from a place of not processing and grieving enough, because I get sad when I see the world move on, and I am just stationed due to my condition, no matter how hard I try. 

I guess the lesson for me is to relax. i pray, serve in my church, and I do art. this is what keeps me going. 

I hope this helps.

Hi Solomon and a warm welcome to you.

You will see from my reply above my journey is rather different but my 26 years experience says there are ways to navigate through this and still live life to the full (See my story)

If you are in the UK do look at the Lymphoma Action links I have put up as there are lots of ways to connect with others on the same pathway.

We also have our dedicated Religion, spirituality and Prayer support group on the community where people of Faith chat and support each other.