New to the group

Hi iris I’m Kim. I too have same and did same treatment. I can’t believe you’re back at work, well done you!! I found the maintenance treatment gradually draining till by the end of the two years I was completely exhausted. However believe me, there’s light at end of the tunnel! I finished my two years treatment six months ago now and in that time I gradually pulled myself together, joined Bannatynes and now swim, gym, Zumba, etc etc. absolutely loving life. Everyday is a beautiful bonus. You’ll get there. Best of luck xxx

Hi Iris Iris and a warm welcome from me to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Getting back to some normality can be very challenging….. I worked through my first 12 years in a demanding teaching job but following my 2 Allo (donor) Stem Transplants (June 2014 then Oct 2015) my recovery was a good 2 years - thankfully I was retired by then.

The recovery…… is little and often activity, definitely not a sprint but most certainly a marathon.

Glad you're doing well. I've only had 4 rounds of injections due my 5th in 4 weeks. I have noticed I have no saliva and the awful tastes in my mouth hav come back. We're you very tired 

Yes very. But it’s to be expected sadly. X

Hi Iris

I'm a little ahead of you on maintenance. Tiredness (fatigue) is unfortunately to be expected. There will be bumps on the road but it's very possible to get through it. To offset the  fatigue I try to do regular exercise. I try to avoid gyms (to busy and I'm trying to avoid too many external contacts to limit the chances of infection) but walking is still a pleasure and as I'm still off work I can do it when the best locations are quiet.

Life is still good post diagnosis and that keeps my ploughing through the treatment