New member in need of a friend

Hi  im 56 and was diagnosed last May (2023) massive shock as you say but im a very positive person. Happy to be a friend if needed we are all in this together. 

Thankyou, like you I try to stay positive but every now and then get the wobbles with I except is normal. 

Thank you for your reply 

I’m glad I have found this forum 

just to be able to talk to other people in similar position is comforting 

Hi NannieRoll and a second welcome to this corner of the Community although I am always sorry to see you joining us and sorry to hear about your CLL diagnosis.

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, also 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.

Active Monitoring (Watch and Wait) is often the first step in the treatment of these slow growing blood cancers. I was basically on Active Monitoring for 14 years before I needed any significant treatment although I was having skin treatments as my type of Lymphoma was a skin type.

I often talk with people on here and on another support site who have had little or no treatment as their condition has it had not developed sufficiently to allow the treatment to be effective.

Do check for a local Maggie's Centre as these folks are amazing and provide support and they do run a monthly Heamatology Support Group - the one I attend has a few folks with CLL in it.

Do also check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

With CLL......... although it has the word Leukaemia in it, in Heamatology terms........ actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This us why CLL, SLL and HCL have a group on their own away from the main Leukaemia groups.

Lymphoma Action run regular Support Platforms both for patients but also for family and carers...... 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 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.

I am always around to help more, just to chat and to answer questions.

Hi I'm 56 and also was diagnosed with CLL last year. 
i was watch and wait until November when I started treatment, in tablet form.

i understand how you feel because it is something that is always with you. However, I have felt absolutely fine with the treatment, other than fatigue and my lumps all started to reduce as soon as I started. Quite amazing.

my consultant also said, if you are to have a cancer, CLL is one of the best to have..

Having known I've had this for over a year, I feel like it is something that will always be with me, but just need managing. 

Happy to be listening ear or to share more if you need. 

Hello there, my names Alison, i was diagnosed at 48 and ime now 51, ime currently on watch and wait, i totally understand your feelings when you get to your 3 monthly reviews as ime the same, once ive had the appoinment i put it to the back of my head n try and crack on .. my motivation is walking my 2 dogs and mtb riding, however thats not as much these days as ime waiting for a new hip, i wish there was maybe a group closer where we could meet up for coffee/ bikkies ect and share our feelings to helo each other out. 

Feel free to chat anytime hun, if u want my email i can soon pass it on if you want it. Take care 

Alison B 

Thank you so much much taking the time to  message it is greatly appreciated. You take care 

Thank you so much taking the time to message me, I’m glad I’m not the only one who feels like I do, 

i have started going to the gym and that has definitely helped me.

it would be so good to meet up for a coffee or two to have a chat with other people to share our thoughts and experiences.. 

I live in Essex which is a big county 

but would travel.

take care x

Hi there ime up in teeside so about 4/5 hrs away,if we maybe put something out on here for a meet up ime happy to meet up,i think its a good idea,really helps when you can sit n chat,i was also born with a very rare condition MRKH and i went down to london where my main hospital for treatment is,i met up with some lovley ladies and it really helped me,so its deffinatly a good idea to meet up.its hard sometimes isnt it when were on our own so t speak, i find putting notes out on my cupboard doors ect telling me how good the days going to be and how evreythings going to ok. I try to be posative,its good u have joined the gym,put some earphones on. Music takes ur mind off things.

Take care Ali

Btw I live in Leigh on sea Essex. Not sure where you are in Essex