I was diagnosed with low grade follicular Lymphoma almost a year ago now. I’m on watch and wait. I feel perfectly fine apart from tiredness occasionally and anxiety now and again. I am stage 3 and when it’s time for my 3 monthly catch-up with the oncologist I always feel a little anxious.
What upsets me most, is when folks learn I have this condition they always says things like “oh well at least it’s not terminal” “ oh well you don’t need to worry it won’t kill you” “ oh, it’s not really cancer is it” “ that’s not that bad “
I never know how to react, or how to respond. What am I supposed to say or feel? . Sometimes I’m fine, some times I’m worried sick. I wish I knew what to say to those people , they make me feel like I should be happy that it’s only blood cancer.
That I have no need to feel how I do. I never complain or talk about it even to my husband, it’s just bottled up inside me. But they make me want to scream.
Hi again Sasbambam there are a few aspects to this, most people just don’t know what Lymphoma is let alone how low grade NHLs like FL can actually develop and become aggressive.
There is also a massive misconception that due to the fact that most people who have Lymphoma don’t have any surgery then it cant be a ‘real’ cancer.
There is also the camp that people just want to be encouraging abd supportive but they must likely end up providing toxic positivity.
I think ‘talking’ with others who are navigating the same journey can help a lot so do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run regular Support Platforms..... 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 people can be linked up with someone who has walked the same treatment journey.
What do I do……. I educate and correct misconceptions highlighting various parts of the Lymphoma Action website…. if they continue to say stupid stuff I just ignore them ((hugs))
