Well it most certainly has been an up and down last couple of months since being diagnosed with NHL. After many scans and blood tests it was determined that I had elevated LDH in the blood and extensive lymphoma in skeletal areas and liver at stage 4. So I have now signed the consent forms and had the bone marrow biopsy and am ready to rock n roll with treatment. Low and behold yesterday get a call from my consultant telling me my bloods have now shown different results and do not quite meet the criteria for PETReA. I am having a CT and PET scan on Monday and he will call on Wednesday to update me. Up until now I have been really positive and generally ok emotionally but I have to say this has really messed with my head.
I don't really want to watch and wait knowing how extensive the follicular lymphoma is and just want to start treatment asap. Guess will just have to be patient and wait till Wednesday.
Hi again ….. this is blood cancer for you, pure science and can change in the blink of an eye.
Over my 22 years there has been many years and of doing nothing then years of various treatments depending on what my condition was doing…… this is all part of ‘living’ with an incurable NHL is like……. The important thing is not to allow it to define you.
Lets see what Wednesday brings.
