Hello everyone! I just joined.

Hi   and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your wife’s 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 was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

There are a few active members on the group at the moment so let’s look for them to pick up on your post, you can also go through the older posts (hit the main group heading) and you can hit reply to any post and see if the member is still using the site.

Do check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

CLL although it has the word Leukaemia in it, in Hematology terms actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This us why CLL, SLL and HCL have a group on their own.

Lymphoma Action run regular Support Platforms both for patients but also for family and carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where your wife but also you can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma 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.

Thank you Highlander. The non-Hodgkin lymphoma is news to me. It has never been mentioned by my consultant. I am the one with the diagnosis, not my wife. Is there a particular reason why only a few members are active? I will look into the lymphoma and see if I can draw comparisons. 

….. sorry made a mistake there….. can’t even blame chemo brain 

There is no specific reason how busy these groups are….. people join and get an answer to their question and move on, others stick around.

I also volunteer for Lymphoma Action and lots of folks with CLL and SLL go straight to their support platforms.

It’s all about groupings of blood cancers and these three in this group are slow growing this is why they have their own group away from the aggressive Leukaemia’s ……

The important term is ‘seen in the same light as slow growing Lymphomas’… but not actually the same - yes confusing.

Lymphoma Action cover these specific types……. I have a skin Lymphoma but it’s not skin cancer…..  blood cancers are complicated.

Tell me about it. I have foggy brain syndrome all the time. I think I understand what you mean. Blood cancers are complicated. I had no idea until I got diagnosed. Unfortunately, I made the experience that some don't take it too seriously probably because they know nothing about it. After years on watch and worry, things are progressing and consultant suggested a drip and chemo but I decided on inhibitors for now. I have other health conditions so the side effects and how I will cope concern me.

I have been on my journey for over 24 years so understand the challenges well.

When I eventually went into my main 2 years treatment in late 1999 I had to have some very strong treatment and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........

My story is rather complicated See my story as I had to go onto other treatments but I am coming up to 8 years out from my last treatment and I am turning 68 in Nov and doing great.

That must have been a dreadful ordeal. I doubt I would be able to. I'm at a place in my life where I haven't got the strength and determination to go through rigorous treatment. That what frightens me should things go pear-shaped with my illness. I just hope for the best and try not worry too much.

A day at a time is the best approach….

Do check out the Lymphoma Action Buddy Service as they may well be able to connect you with someone who has walked the same treatment journey with the same treatment.

I am a buddy for my rare type of Lymphoma - it’s a great service.

I give it some thought. Thanks.