Hello everyone 
I'm been lurking for a few days, and finally plucked up the courage to say hi. My name is Pippa, and I'm recently diagnosed with NHL (Follicular). My journey to diagnosis has been equally frustrating and terrifying, but I'm grateful to finally know what is wrong.
I'm going to be very grateful for the advice, support and distraction this group will bring 
Wishing everyone well on their journey.
Pippa x
Hi Pippa PippaJ and a warm welcome to the Macmillan Community but I am sorry to hear you find yourself on the Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma (FL) but I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015.
As I said my first type of NHL is a Low-grade non-Hodgkin lymphoma and like your FL……. these types of NHLs are seen as life long, incurable but very treatable Lymphomas where required.
As an encouragement, back in 1999 our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various skin treatments (as my Lymphoma was on my skin) over these first 14 years then in late 2013 my second rare more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4……. but this was all remained very treatable…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10 years since my last treatment.
As FL is the most common type of low-grade NHL…… we do actually have a specific group just for FL……. This link >>>>Follicular Lymphoma will take you to that group.
So have you been told the direction your treatment will take?…… are you starting treatment or have you been put on Active Monitoring (Watch and Wait)……. often the first step with FL.
Always around to chat ((hugs))
