HI All
I am new to the group, i hope you dont mind me joining.
I have post treatment issues and wonder if anyone is suffering the same.
I was diagnosed with Hodgkin’s Lymphoma on the 16th April 2020 at the start of lockdown 1, a large tumour was found in my chest i started 4 rounds of ABVD in May and half way through i developed Peripheral Neuropathy. After the ABVD treatment i then had 15 rounds of nearfield Radiotherapy. In February 2021 after my last PET CT Scan results showed "No evidence of the disease, a complete metabolic response" . Howevwr the Peripheral Neuropathy has become progressively worse, i now walk with crutches and i have put on nearly 4 stone in weight. I was heavy prior to diagnosis but fit and active now i struggle to get about.
Can anyone relate or iffer any advice.
Hi and welcome to this corner of the Community, I am Mike Thehighlander and I help out around our blood cancer groups.
First well done getting through your treatment and receiving the great news in February that you are NED.
Treatments like ABVD and Radiotherapy are hard and often leave unwanted ‘Left Overs’
I had a rare type of NHL, diagnosed way back in 1999 and it took until Sep 2016 before I heard NED, it’s a very long story so hit my community name to see it but make a cup of tea first.
I suffered from bad Peripheral Neuropathy mostly in my hands but sometimes in my feet. It took a good few years for it all to clear up.
But my main problem was following my second Allo (donor) Stem Cell Transplant I ended up in a wheelchair as I had lost so much muscle mass after being bed bound for long periods of time.
It took a good 4 months of weekly Physiotherapy to get up and walking with sticks and a further 2 years attending a cancer specific circuits class at my local Maggie’s Centre to finally say I was in better physical place then I had been in before my main treatment started.
I had lost a lot of weight during my main treatment (27kgs) so was put on a high protein diet....... yes I put weight back on (25kgs) as I forgot to come off the diet. This time last year following my yearly late effect clinic I was told I was pre-diabetic. So I changed my diet, walk miles and just last week I had lost 24kgs and am no longer pre-diabetic.
The post treatment journey can take longer than you would like or even imagine 
What are your team saying about you PN?
((hugs))
A smile can always help.
My Specialist Cancer Nurse, who we have got to know very well over the years of treatments is a straight talker.... we like this.
“Mike, no pain no gain” she kept saying and to my wife “Fiona, remember don’t join Mike’s pity me parties..... it’s all about tough love”
Recover can take a long time, hard work and determination. Getting your pain meds sorted out can help a lot..... only last January (2020) I eventually asked for all my pain meds to be removed from my repeat prescription...... this took 7 years but I don’t regret the journey as I now reflect on being told I had a few years on the clock back in 2013 
Support is important so you may also find checking out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.... and you may well bump into me their as well.
((hugs))
