Hi. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in early October 2023. Im just coming to terms with everything that Chronic lymphocytic leukaemia (CLL) means. I’ve read a lot about it and am on watch and wait. Next blood test is on the 31st of October. Happy to hear from anyone. DermotR
Firstly a huge welcome to the forum
Sorry to hear about your diagnosis but really glad your found the forum as it’s an amazing place for advice, support and sincere and genuine empathy.
I have a different kind of blood cancer, but I know there are lots of people here with Chronic lymphocytic leukaemia (CLL) so it’s just a matter of time before someone responds with a better and more knowledgable reply.
The bcuk has some excellent information on Chronic lymphocytic leukaemia (CLL) to try and understand it all but I agree, when I first diagnosed, reading info was at times confusing, scary, and I wasn’t quite sure where I was along the spectrum and all I wanted was to hear first hand experience of what to expect going forward.
Thanks for posting and be sure to keep posting how you are getting on and are feeling.
Hi @DermotR I echo @Rammie18 words.
I have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 19 yrs ago at 53 yrs old and I have been a very lucky girl and always been on watch and wait (active monitoring).
Others start treatment immediately.
I found the shock of my diagnosis took a long while to come to terms with.
I would say to be ever so kind to yourself and as @Rammie18 says there is a lot of information on the Blood Cancer Uk website.
Really look after yourself and i am here for all yourquestions, please do ask anything and I look forward to hearing more about you.
Hi Rammie. Many thanks for your response. It’s lovely to hear from people who ‘get’ what is going through my mind! I look forward to seeing and virtually meeting fellow travellers in our challenging journeys. D
Hi Erica. Great to hear from you. Ive received all of BCUK’s brilliant Chronic lymphocytic leukaemia (CLL) publications. I ordered extra copies for my children for them to come to terms with the condition. I’ve also joined the UK Chronic lymphocytic leukaemia (CLL) Support group which has been very helpful to me beginning to understand what it means. Im delighted you’ve been on watch and wait for so long. I hope i will be as lucky. The thing I haven’t got my head around yet is that I’m feeling really well and fit. I eat healthily, go to the gym and still work 3 days a week (aged 71). It keeps my very mentally and physically active. Stay well Erica. D
Hi @DermotR. Erica and Rammie have already given great responses and I hope you feel less alone now you have joined the forum.
Coming to terms with things can be so tough and seven years on, I still have times when it blows my mind (I have lymphoma)
Explaining to children can be tough - mine were 11 and 7 at the time.
I still find those check in conversations difficult and I know they worry near appointment times.
Really glad you have found us. Please keep us updated on how you are doing X
Hi Nichola. We’ve got three kids and 6 grandchildren. We’ve told our son about the Chronic lymphocytic leukaemia (CLL) and he felt that he was ‘hit by a freight train’ with the news. We’re telling one of our daughters this evening, and not looking forward to it. Many thanks for reaching out to me. Everyone’s responses are very important to me. D
@DermotR telling our nearest and dearest is so hard isn’t it but it is better that your daughter hears it from you than anyone else.
I felt that I was hit by a freight train when I was diagnosed too!!
Please do let us know how you get on telling your daughter and anybody else, also how your blood test go.
I still get nervous around all tests, results and appointments
Look after yourself I find emotional stress wears me out
Hi Nichola. It’s weird. You end up comforting your daughter when the condition is all mine. Like our son, she’ll come to terms with it over the next few weeks. Just one more daughter, then our friends!
I kept it together when I told people as well as I knew how upset they would be. I had good cry afterwards though so please look after yourself. It’s emotionally draining telling people so self care is important. I hope it goes ok tonight X
Eleanor was very upset. Fortunately her husband was aware we were telling her the news and he came over. She just needs to read the BCUK booklets and come to terms with things. Thanks for reaching out to me. D
Weirdly, i feel fine about it. That’ll probably change.
hi dermotR …i was told beginning of the year .big shocker to begin with,same as you kids had me (dead)lol.i have 8grandkids the oldest know … ar first it is strange and dint know what to do think…i myself is on wait n watch .first i was realy tiered, but still have to work so just getting on with it day at a time work has been great towards it . erica gave great advice early on …listen to your body ,if you nead a nap have a nap …if you feel like walking do it …so after your daughter reads all about it she will be fine …more chance getting run overby a bus …take care .keep writing in we are all in same boat
Hi Gordo. Great advice, many thanks. D
Hi Chronic lymphocytic leukaemia (CLL) friends. My recent blood test means I’m now being left alone for four months. Good news. I hope you are all doing well. Best regards, Dermot
Really good news @DermotR, I can feel a celebration coming on.
Yes, I didn’t realise how concerned I was getting until I spoke to the nurses today.
Great news! Now breathe
Breathing, breathing!!! Dxx