Hi to all,
I was diagnosed with CLL in 2014. On watch and wait up to 6 yrs ago. Developed mouth cancer and CLL also kicked off.
so all been a bit manic over the last few years. Re CLL I’ve had chemotherapy then went on to have 15months of immunotherapy that I completed in December. Am now awaiting follow up check appointment that is in March.
came to the forum because on times my emotions get the better of me. However I’m thankful I’m still here and for the amazing strides forward that are being made in dealing with blood cancer. All the best to everyone.
Hi again Pandora and well bone navigating across to this corner of the Community.
As I said in your post in the New to Community area I don’t have Chronic lymphocytic leukaemia (CLL) but I understand this journey rather well having been on my journey with both a low-grade and a high-grade Non Hodgkins Lymphoma for over 25 years…..
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my full story) but I am over 10 years out from my last treatment, I turned 70 last Nov and I doing great.
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.
There are a number of active members on the group at the moment so let’s look for them to pick up on your post.
If you are in the UK you may want to 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 see from one of your reply’s in the New to Community that you are a Christian …… I am also a Christian.
We do actually do have a small group of believers who post from time to time in our dedicated….. Religion, spirituality and Prayer forum group.
I am always around to help more, just to chat and to answer questions.
