Lovely Nicky shares her FL story and her amazing journey which lead to her establishing the Living with Follicular Lymphoma social community Facebook – the largest FL community in the world.
“Does that mean I have cancer?”
Cue punch in the face!
That is what it was like for me. Even though I was not expecting it to be cancer, the words still fell out of my mouth.
Nothing can prepare you for that moment or the journey ahead. I had to start treatment immediately and 6 months later, a PET scan confirmed the treatment was working. Great!! it worked! But for how long? For me, the next part was the hardest. The twelve months following treatment saw my mental health deteriorate as I tried to wrap my head around this life changing diagnosis. I had so many questions and needed reassurance that my life was not over. Nobody could really give me that because I did not know any others with Follicular Lymphoma (FL). There is a comfort in knowing you are not alone. That someone else is walking this path as well and surviving.
I searched for others but could not find the connections I was looking for. So, I found myself creating a community on Facebook and I called it ‘Living with Follicular Lymphoma’.
I will never forget that instant relief I felt as I connected with other FL patients and learnt that some are still thriving with this condition 30+ years after diagnosis. It is the hope that we so desperately need to help us carry on living our best life.
As a community we are all learning together about new treatments, we discuss things we can do to help with treatment side effects, and complementary therapies that might help avoid relapse and improve our quality of life. The idea of multiple treatments over time is always on our minds. How will this effect our quality of life? This is why, a cure is so important.
One of my goals is to try and connect every FL patient in world so together we can work towards finding a cure. The Follicular Lymphoma Foundation is helping us do this. We can help by raising awareness and funds to allow the FLF to work towards this goal.
I recently turned 40 and the only gift I want is a cure for FL. So, I planned a big purple fundraiser to help raise awareness and funds. I had the help of some wonderful friends, family, and local businesses to plan an event that saw us raise over $7,500 for the Follicular Lymphoma Foundation.