I would love to engage with others for support and give support too! I’ve recently been diagnosed with CLL although my symptoms don’t apparently match up with the biopsy diagnosis as I shouldn’t be feeling so unwell apparently so I was sent for a bone marrow biopsy (hope never to have one of them again lol) I don’t see the doctor until the 8th of December which feels ages away! I’m too nervous to go out on my own now and I can’t even do a normal supermarket shop without feeling too unwell. I’m even using a wheelchair. I only went to the doctor at the beginning of august because of mild symptoms, it was my daughter that made me go! So I’m a bit shocked just a few months on and I can’t work anymore and have to limit everything I do to barely nothing!! When I googled CLL I couldn’t find any details on other people’s symptoms, no one seemed to experience what I am. Hope to hear from others but sorry you are going through this journey too.
Belinda xx
Hi again Belinda Blin and well done navigating across to the group and putting up your post….. and I also see that you have started interacting with other posts.
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 do hope that your team can get to the bottom of what is going on with you.
Let’s look for other group members to pick up on your post.
Do get back to me if you want a chat.
Yes once you get the hang of the community it’s straightforward to use.
We all do what we have to do to navigate our cancer journey……. I am actually doing great….. in the middle of decorating the lounge at the moment.….. I turn 68 in a few weeks and am living the dream…..
Once these clinical teams dig down to find out exactly what is going on they can put a plan in place to look for good outcomes for you.
I have had plenty of time and opportunities to get my mind round all the various tests and I have had a number of other investigations that are not even mentioned in my profile.
Coping techniques?……. my approach to all the new processes and tests was very simple and stark……… ‘suck it up Mike and get on with it…… if I don’t go through the processes and tests I don’t give my team the best information to treat me effectively……. and I also reduce the chances of me prolonging my life’
This may sound very left field but do check out 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...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey and I have a few folks in the group I run with CLL.
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.
