CLL

Hi Springer 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 Lymphoma / 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.

As for your question about rakki..... i have no idea but do call your Cancer Nurse Specialist and ask them.

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. 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.

Lymphoma Action run regular Support Platforms both for patients...... 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

Hello, my name is Neil, I am new to the site and also recently diagnosed with CLL, I am in the watch and wait club too. Looking back I am fairly sure I have had this for about 5 years. 

Hi Neil Steamer63 and a warm welcome to you but sorry to see you joining us.

You will see the information si have already posted to Springer …… I was basically on Active Monitoring for about 14 years before I had to have any full on treatments. I prefer the term Active Monitoring as i fund Watch and Wait sounds less supportive as though nothing is being done to support you on your journey.

I am always around to help out or chat.

Hi Mike, thanks for your reply and wise words, kind regards Neil

Hello, I try not to talk about my diagnosis, I feel like if I don’t acknowledge it, it isn’t there, obviously I know this isn’t tgood to keep things bottled up, but when I’m ready I’m sure this will change. I wish that they had local face-to-face support groups in Liverpool. Can I ask how old you are Neil?

Hiya, we all have to face and deal with this in our own way so there isn't a right or wrong way for any of us. Little steps might be a way to make a start about talking about things. When you are ready to talk about it you will know it and you are certainly not alone. I am 63 and from Suffolk, my head still thinks I'm 25 though