Hello, I'm Doddles12 I was in A&E with a chest infection when the Doctor sent me for a scan. The news that he gave me was a shock that I had cancer on all of my organs. I wasn't unduly shocked as of this year I have been unwell for 22 years after an accident at work. I have chronic back and foot pain and numerous chest infections. I was admitted and after a lot of tests was diagnosed with CLL stage 4. I was then allowed to go home to recuperate and to carry on as normal. My only other ailment was tiredness the constant need to sleep. After the next month's blood test. I was invited into the hospital for my chemo treatment this was because of my back pain as I can't sit in a chair for very long. I was then getting chemo once a month and it was the fifth month that I was taking chest pains and was sent for more checks where I was told I needed2 stents done. Since then, I have been on Watch and wait.
Hi doodles 12 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have CLL but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Lymphoma ‘type’ is different I understand the challenges of the journey well (see my profile)
Your story is not that unusual as folks can live with these types of blood cancers for many years and have no idea until it’s picked up during checkups for other conditions.
I refer to Lymphoma as CLL and SLL are different forms of the same illness. They are often grouped together as a type of slow-growing (low-grade or indolent) non-Hodgkin lymphoma so I always highlight the Lymphoma Action website. The Bold link above are taken for the site.
Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Support Groups - I highly recommend these groups as there is nothing better than talking with other who are walking the same journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
I actually had two stents put in 5 weeks ago and the difference is amazing. My heart problems are mainly down to all the treatments I have had over the years but I am now 6.5 years in remission and doing great.
Always around to chat.
Mike - Thehighlander
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Thank You The Highlander, I am very new to this site and thought it was part of The CLL group so I will head to the Lymphoma Action Buddy. I was told the same that the leukaemia would more than likely not kill me and that I could die of old age or something else. Keep well.