Hi there. As of 11.30 today I now have a diagnosis of CLL and am on a watch and wait.
More nerve wracking and waiting. How do people do it...its the waiting that is so frustrating
Hi ColSte and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. 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 very treatable type of Low Grade NHL 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.
Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.
Do also check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
Although CLL has the word Leukaemia in it, in Haematology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.
CLL is slow growing so people are put on Active Monitoring (Watch and Wait) …… I was on Active Monitoring for over 14 years before my condition developed to the point that full on treatment was required and would be most effective.
I actually don’t use the old term Watch and Wait as I find it develops a negative mind set, I much prefer Active Monitoring as it is more accurate in how you will be supported.
During the first 12 years when I was on Active Monitoring I lived a normal life, work on a full teaching timetable in a demanding university job, seen my two daughters marry and the first of 4 granddaughters came into our life.
If you are in the UK do check the Lymphoma Action Support Platforms...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Buddy Service where yyou can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to help more or just to chat
