I went to A&E 5 weeks ago because I had pain in my abdomen, they thought it was kidney stones, after a scan they found a tumour. I got appointments for other scans and got told I needed to wait for 6 weeks for a biopsy and diagnosis. The pain ended up being so bad a few weeks later my partner took me to hospital. I was there for over 2 weeks where I had my tonsils out (for the first biopsy) then had to have a second on the tumour in my belly. Turns out I have low grade follicular lymphoma and the tumour in my belly had switched to high grade. I’m now receiving chemo, had my first lot last Thursday and the anti body treatment.
I’m only 34, I’ve been with my partner 18months who is the love of my life, and I’m only a few years after getting through a horrible divorce. I honestly feel like my world has ended and nothing is ever going to feel the same again. Im scared of literally everything at the moment and I’m getting a lot of support but I just can’t wrap my head around it. I feel like my life has been cut so short just as I was getting to a really good place.
Hi Kirstycott and a warm 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 Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable 'other' type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Your story to diagnosis is not that unusual as Lymphoma is not that easy to to pinpoint but good that you are now on a treatment track....... what exact treatment are you having?
It is hard to get your head round this but FL is actually very treatable with good results....... like my type of NHL FL is incurable but your High Grade can be cured........ it won't feel like it at the moment but there is actually life following this.
My story is rather complicated See my story as I had to go onto have many treatments but I am coming up to 8 years out from my last treatment and I am turning 68 in Nov and doing great.
Always around to help more or just to chat
