Hi there, I am not very good a this kind of thing but here I go anyway. My story is i had a fall in the February 2023 and by September i still had pains in my shoulder and hand. I went to the doctors who did the usual blood test and xrays. I received a call from the doctors who said my inflammation markers where very high and they were going to send my blood to a specialist to understand why my markers are high. My referral got mixed up by one of the hospitals so my doctor made an appointment for a different hospital. While waiting for this appointment I did the the thing you are always told not to do but i googled what it could mean, BLOOD CANCER came up, i was positive it wasn't CLL.
My appointment came through and my brother in law came with me to the hospital. i went into my hospital appointment and I was diagnosed with CLL on 3rd October 2023, the specialist gave me a booklet and said I am on a watch and wait. I didn't cry at the time, I just went for all the tests in a bit of a daze.
Since then when talking to people about my diagnosis, some people have said to me " Well you can't have cancer if you are not receiving treatment for it". This makes me feel like I'm a fraud, my mental heath has took a nose dive recently.
I just wanted to reach out to see if other people feel the same or have had similar experiences?
Thanks for your time
Hi Minxy and a warm welcome to this corner of the Community although I am always sorry to see folks 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 very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
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.
I can understand the concerns you have. When cancer comes into your life the battle between the ears can be hard to control especially when it’s not treated…… “you must treat this straight away!” I hear you say……. but this is not often the way with slow growing blood cancers.
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 also check out the Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.
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.
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.
My type of Lymphoma is 8 in a million rare so it took some time back in 1999/2000 to get clear information but you will get there.
Actually Lymphoma Action are holding a Special Focus (Zoom) Support Meeting on Tuesday 25th June and will focus on CLL to
This meeting is for anyone with a diagnosis of CLL (chronic lymphocytic leukaemia). We will be joined by Clinical Nurse Specialist Amelia Daibell from Nottingham City Hospital who will talk about CLL and answer your general questions. There will also be the opportunity to meet with others with similar experiences.
Follow THIS LINK for the information to register for the meeting.
I have given you a lot of information but do get back to me if you have any questions.
