Hi all,
So my wife of 33 was diagnosed with CCL in June 22, we have had the usual blood tests for her be put on "watchlist" so we have our next round of blood tests this November, I'm always telling my wife I'm positive of the results but to tell the truth I'm bricking it....its scares the living cr*p out of me and not much scares me tbh. We also have 2 kids 9 & 12 but they don't know about it. It's just scares me that it could spike to the point where it becomes part of our lives even more so.
I have limited support as my family turned there back on me, I'm slowly getting deeper and deeper into the abyss.
Any advice would help
TIA
Hi SJE88 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.
I can understand the concerns you have. When cancer comes into a family the battle between the ears can be hard to control especially when it’s not treated…… “you must treat this straight away!” I hear you say……. but this is not often the way with slow growing blood cancers.
Active Monitoring (Watch and Wait) is often the first step in the treatment of these slow growing blood cancers. I was basically on Active Monitoring for 14 years before I needed any significant treatment although I was having skin treatments as my type of Lymphoma was a skin type.
I often talk with people on here and on another support site who have had little or no treatment as their condition has it had not developed sufficiently to allow the treatment to be effective.
Talking can help so do check for aany Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and provide support from all the family.
Do also check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos (all the links in my post are taken from their site)
Although CLL has the word Leukaemia in it, in Heamatology 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.
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.
