Afternoon.
I have recently been diagnosed with CLL. I have been finding the fatigue and affects to my Mental Health quite hard to deal with. I have taken sometime off work as I found it quite difficult dealing with work effectively on top of everything else. I am also experiencing a lot of issues with IBS…has anybody any tips or anything that works for them to support with any of this? Thank you for taking the time to read this.
Hi Alibaba17 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 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.
I am sure that you have been getting advice about your IBS from your medical professionals but IBS can be caused by stress and anxiety but talking to others who are navigating the same journey can help…… what the saying….. a burden shared us a burden halved
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 check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a few folks with CLL in it so worth checking.
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 Heamatology terms CLL actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.
Lymphoma Action run regular 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 Lymphoma Action Buddy Service where people 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
Every cancer journey is unique and regardless how demanding the journey is it requires commitment and strength to see it through and most importantly the mindset to not let our cancer define us but we strive to define our journey.
