Hi all.
I was diagnosed with CLL 19 Mar 2024. At the time of diagnosis my Consultant said that I could have possibly endured this disease for over 35 years. I have never been thoroughly tested (bloods) but I have had numerous X-rays, MRIs & CT scans, none of which were ever explored. In 2014 I received a course of 3 injections in my spine for nerve relief due increasing back, neck and upper left leg pain. Att it was explained to me that I had a degenerative bone condition in my lower and upper spine. After the treatments were completed the doctor's secretary told me that there was nothing further they could do for me, well, other than pain management group therapy and/or a TENS machine! After the phone call ended I understood why it was done over the phone. I exploded, out of sheer frustration knowing that this would never be looked in to again.
Att I was serving in the RAF and returned to see the base Doc who was very sympathetic but having read the statement from the hospital delivered the final blow... other than pain killers there was nothing more she could do. Well I tried everything she could throw at me but nothing helped.
Late 2014 I lost my father to bowel cancer and in late 2015 I was diagnosed with severe depression (still in the Forces). Well put the depression aside for now, but the back and neck pain was reduced to, on a scale of 1 to 10, 2. I couldn't believe it. I was back in the gym, training for fitness tests and weightloss. I was incredible. The base Doc was amazed, 2 birds with one stone she said; think she thought she'd mucked up, but after a 20 second stare and a raised eyebrow, I burst out laughing.
Unfortunately in 2017 I decided to leave the Forces after 34 yrs service and support from my new local Doctor's surgery was abysmal. As they didn't receive my med doc's they would pursue. I was told in no uncertain terms that I would not be a burden on the NHS as there were more deserving people out there! Perks of being a Veteran.
We moved 5 years ago and I eventually plucked up the courage to see if my new doctor's surgery were up to the task. After almost a year of too and fro' I'd had enough. Made and appointment, arrived, sat down, explained EVERYTHING. Then sat back, not saying a word, until the 'young' doctor finished telling me there was nothing, other than prescribed pain killers. That probably took him less than a minute. How I wasn't ousted out of the room by 2 large security guards I don't know. I told him, with words to the affect of, if you don't refer me then not only his reputation but that of the surgery would be brought in to question. Seriously, how no one can to his rescue during the one way conversation I'll never know. Well I got an X-ray appointment and also informed his that I would be contacting https://www.oprestore.nhs.uk/ for further guidance.
A few days before the x-ray i got a letter cancelling it and stating that I had a new appointment for a CT scan, blood tests and an appointment with Haematology.
Diagnosed, a couple of nerve blockers tried. Now on Watch & Wait but 90%pain free.
The rest is history.
Just suffering at the moment with flu and have called in sick for a few days.
I know that I have harped on but this is the first time, other than family, I've said the whole thing. Well, maybe not all...
If you have got this far in one try, we'll done. Just need to get it out there. Family are great but unless it rears its ugly head they all avoid.
Thank you for "listening".
BTW, I'm under Haematology @ Burton hospital and couldn't be happier.
Hi Gray0202 and a warm welcome to this corner of the Community although I am sorry to see folks joining us and sorry to hear about your CLL diagnosis and the journey you have been on.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL)……. for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Your route to diagnosis is actually not that unusual for some types of blood cancers…… I most likely had been ‘living’ a normal working life…… then once I was in the system, even although my consultant was 99% sure as to the type I had it still took a further year, 6 biopsies and a few CTs for the truth to be revealed.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am over 10 years out from my last treatment, I turned 70 last month and I doing great.
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.
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.
With this in mind you may want to check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a 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.
Always around to chat.
Hi Gray……. oh I know how you feel….. this winter has been bad. I am on my 7th week dealing with the various viruses that are doing the rounds…… and just out the other side of dealing with Pneumonia and the disgusting antibiotics that is needed.
I take my hat off to everyone who navigate this journey…… in my opinion everyone is remarkable….. and that is why I use the Nelson Mandela quote as part of my signature.
As for your rights, you are protected to a significant degree. I recommend that you call the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides many support aspects especially in the the area of benefits, financial advice and work law guidance.
