So I recently got diagnosed with CLL with a rare sub type nkcells whatever that means. Apparently it started in November 2021 but it was only Nov that my Dr got worried after my 3 months routine diabetic blood test so on Dec 28 he rang and asked me to come in that day.
That was unusual to say the least so I went totally unprepared for what he said but he did say as a GP it might be something else but he pointed out my lymphatics had been steadily rising to a point of worrying so I had another blood test to rule out some other things then I was sent to a clinical heamatolagist specialist.
And yes she said he was right so now here I am worried stressed and not really coping very well.
My CT scan shows a swollen spleen which hurts big time I might add but since then in the last week I've had a pain behind my right ear going downy neck adding to the pain iny left armpit and boob plus other symptoms and aches and pains.
I'm on watch and wait or monitoring it's hard to explain to ppl as the first thing they say is are you on chemo nope I tell them and then eyes glaze over.
I don't know guess I just need someone who knows to talk to who isn't a dr
Hi Lady tish 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 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.
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 along 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.
When I as first diagnosed my great Cancer Nurse Specialist (CNS) said that living with these slow growing blood cancers was basically in the same as living with say type 2 diabetes….. although diabetes can be more dangerous to live with and they are on treatment for the ready of their life.
Talking can help so do check for aany Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and provide support from all the family.
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.
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. 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.
lol…. yes sorry for that…. yes some of it is copy and paste….. there is only a certain appoint of times you can type up some of the information …….. but also proved that it’s not best to put up a reply when the 3 granddaughters are running round the house 
