Hi,
My name is Jim and have been through 2 lots of chemo for Non Hodgkin's Lymphoma since 2024, finished the last one beginning of Jan this year.( 6 months of chemo)
The problem I'm having is I can't seem to get my energy and stamina back. I'm encouraged to exercise but struggle to walk very far and loose my breath very quickly. Even the smallest thing, making dinner, can wear me out for the rest of the day. It is very limiting. On a little break away recently in a 2 1/2 hour journey I had to stop twice for 1/2 hour naps, and whilst away we spent most of our time sitting in car parks looking out on the scenery instead of being in it.
You can understand my frustration.
Is there anything I can do, eat, supplement my self with that may help rejuvenate some kind of energy. The limitation is really affecting my mood as well as you might tell from my rant.
Any help to find my way would be greatly appreciated. Jim
Hi JEG I see it’s your first post in the community so a warm welcome.
I am Mike and I help out around our Lymphoma groups.
I feel and indeed totally understand your pain and challenges.
I was diagnosed way back in 1999 at 43 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’ my be different I most definitely appreciate the challenges of this journey rather well.
Between Oct 2013 to Oct 2015 I had 6 cycles of R-EPOCH….. that was 120+ fares chemo each cycle that had me on hospital 5 nights/6 days on my 2 IV pumps 24/7…… so over 750hrs of chemo…… 45 radiotherapy sessions (5, 10 then 30) and topped it off with 2 Allograft (Donor) Stem Cell Transplants (June 2914 then Oct 2015)
My Consultant told me that going through the treatment process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months to this point in time….. and this was done without any training.
Think about doing the London Marathon and boxing Mike Tyson 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.
Not giving yourself enough time could be a backward step……. be a patient patient 
Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.….. at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks…… but I am now over 10 years 8 months out from SCT and living a great life…… there is light at the end of this tunnel
Keeping some activity going is important……. There are sign everywhere in my local Heamatology ward and clinic saying a week in bed or being inactive is like ageing physically by 10 years……. I ended up n the CCU a few times during my second SCT…… I was a month away from my 69th birthday when I left the nit but I had the physical capacity of a 90 year old……. It took a lot of persistence….. weekly achievable goals like walk to the first lamppost in the street and back three times a day for a week then extend it to the second lamppost for a week…… this along with a balanced healthy diet with a slightly higher protein intake did the job for me…… along with my local Maggie's Centre who ran a weekly men’s circuit group where a cancer trained fitness instructor set us all exercises to do in the group as well as at home…… little by little things improved.
The community has various Lymphoma specific groups but with over 60 types and sub-types of Lymphoma we can’t have a group for every type but these are our main Lymphoma groups below.
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Always around to chat.
Hi JEG slow and purposeful was our watchword.
Do join the best group for your NHL as you may meet up with others in the same position.
