Hi All
my name is Tim, I live in Stoke on Trent, I am 64 and was diagnosed through a routine blood test on a hospital admission for blood clots in both lungs with CLL or SLL. They are unsure as I am asymptomatic so on active monitoring (watch and wait). My Lymphocites are unmutated which I understand is not good and they are monitoring me every few months with blood tests. I was told that with CLL you are immunocompromised and have to be careful with infections and other diseases including melanoma and carcinoma. I checked my skin and had a lesion on my shoulder that kept growing a very hard horn, very quickly and a mole had grown from 3mm to over 8mm on my back. I had them both removed via surgery on the 3rd September but have to wait for lab results which could take 6-8 weeks. The surgeon suspected a squamous cell carcinoma on my shoulder and unfortunately he suspects a melanoma on my back which was deep. Hopefully he got it all.
I also have HOCM (Hypertrophic obstructive cardiomyopathy) with a pacemaker/ICD in situ, CTED (chronic thromboembolism disease) which are continuing blood clots in both lungs although on Epixaban blood thinners, stage 4 kidney failure, peripheral neuropathy and lymphoedema in both legs but to name a few.
The CLL Is just something else thrown at me. The positive side is I am still here fighting away and won’t let any of these diseases get the better of me. I hope everyone remains optimistic
kindest regards, Tim
