It's been two years since I finished chemotherapy and I've been trying to get over the disease and try to be as normal as possible but I haven't succeeded. I'm back at work where it's not like before after 8 hours of work I can't stand the pain in my legs anymore and I feel very tired. I don't even have a good rest anymore. The hardest part is that no one believes what I'm going through physically and mentally because I tried to explain to the managers but they think that if I'm in remission I should be normal. I tell you this because it affects people who suffer like us. Does anyone have any idea what can be done because for me it is a losing battle. Indeed, life with this disease is not like before. I am very sorry for my sad story, I know it should have conveyed courage.
Hi Messe 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 was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.
What type of NHL do you have and what treatment did you have.
It took me a good 2 years to recover and get to my new normal so I do understand……. but people, who have not navigated the journey just don’t understand.
My Consultant told me that going through treatments like these is like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.
Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality. Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.
You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones. I know many people have printed copies and given them to family. friends and even employers as it explains the recovery journey rather well.
Hi EmmaT I see it’s your first post so welcome to the group and I do hope you find this a safe place to get and give support.
If you have any questions or just want to start your own chat thread put up your own post by clicking “+new” or “+” in the top right next to the group title (just depends on the device you're using)
