Hi everyone. I was diagnosed with Hodgkin’s Lymphoma last June after 6 months of B symptoms (no lumps). I was told in January I am in complete remission after 2 cycles of BEACOPP and a lymphoma free PET scan then 2 more cycles to be sure. I had bloods done on Friday which are all good but I can’t shake the fear it’s back! I have ongoing joint pain and digestive issues that haven’t fully resolved. Just wondering if anyone has had a similar experience! Thank you 
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Hi LKPHL and a warm welcome to this corner of the Community although I am sorry to hear that you are dealing with the post treatment relapse fears.
I am Mike and I help out around our various Lymphoma groups. I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
I can totally understand the early days tear of a relapse…… the first important thing to remember id your body and indeed your mind has been through a lot and it can take far longer for the body to recover post treatment…… my joint pain went on for a a good year…… and even now 8.5 years out from treatment I am still taking meds for my stomach…… but it’s all do-able.
My Consultant told me that going through treatments like these was 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.
I actually relapsed multiply times over my first 16+ years but I am 8.5 years out from my last treatment and doing great…… you have to develop trust in your body….. but this takes time.
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.
‘Talking’ with people can help a lot during the early days.
You may want to checkout Lymphoma Action as they run regular online Support Platforms with one group dealing with all things remission.
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run a monthly Heamatology Support Group.
That’s super thank you so much for your help and advice! Just have to take control of the space between my ears!!!! ️
