CLL and anxiety

What is cycle six of CLL, i to have CLL and am on watch and wait, they say to put it to the back of your mind, but thats far easier sead than done.

Hi Steven63 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 broad 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.

Anxiety is a peculiar thing….. I think I have had plenty of time and had the ability to fully understand my conditions and ‘get’ that these are no longer the death sentence they once could have been…….. all due to the amazing developments in treatments.

Back in 1999 the then median survival for my first Lymphoma was 3-5 years….. well I turn 71 in a few weeks, I am 11 years out from my last treatment and I am continuing to live a great life.

You need to look at ways of reducing and controlling the anxiety triggers….. I have had a very bumpy journey due to the rarity of my Lymphomas and the treatment I have had but my focus was always on getting through treatment and out the other end to get back to living life.to the full.

I would 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.