Hi,
I was diagnosed with Hodgkin Lymphoma on 9th July 2020 (very nearly a year ago now.) I did chemotherapy - escBEACOP-Dac x2 and ABVD x2, and the end of treatment scan showed a complete response.
I was slowly recovering but then started to experience symptoms again (February-April time.) Fatigue, night sweats and all over body itch mainly, and a feeling in my chest which reminded me of how it felt before (I had a mediastinal mass with bone invasion in original diagnosis.) They decided to do a PET-CT scan and this showed a mass in my chest, and it was strongly believed that it was lymphoma again. I was devastated and had to start preparing myself for more treatment, but the decision was made to carry out a biopsy of the mass to confirm it all and check it was definitely the same time of lymphoma. So I had a thymectomy surgery in May and the tissue was tested. It was found to in fact be something called Thymic Rebound Hyperplasia which is a benign condition but uncommonly happens as a immune response to having had chemotherapy treatment. I was in complete shock (and the doctors were to be honest as they were so sure it was cancer to) and felt very lucky but also still nervous about it. Threw me for a right curveball!
Anyway, I continued on and recovered from the surgery, but noticed that I was still getting those symptoms I had before and they weren't explained away . I've now been noticing other symptoms too over the past few weeks, and they're really scaring me. For example this sensation in my armpits and where my shoulder blades are, and some pain in my sternum. This with the other symptoms ongoing is just really worrying me. I've left a message with a nurse and she is going to email my doctor, but I can't help but wait in complete fear.
I know the stats are good for this, and as I was stage 2E relapse is more unlikely, but I can't help but think the worst. The only thing I can compare these symptoms to is what it felt like before when my cancer was developing and it got progressively worse! I really hope it isn't what I think it is, but I think with the whole relapse scare in April-May, my brain is convinced that I will relapse now because they thought I had then. It's like I really can't believe I'm fine even though I obviously do want to feel better and move on.
I know I have to wait to hear back from them about what to do but I can't contain my anxiety so I thought writing here might help.
Does anyone have any advice? Did something similar happen to you?
Hi again Lily lily_s_20….. post treatment recovery can be a long journey and indeed we are left with treatment ‘left overs’ to deal with.
The fear of relapse in the early day post treatment takes time to pigeonhole all the emotions and the what if’s.
Post treatment, every medical challenge that comes along will automatically be referred back to your pre treatment condition and this is so natural.
I have been on my journey with my type of rare incurable NHL for over 22 years now and have had multiple relapses……. but I am now over 5 years out from my last treatment and yes some medical issues….. but doing great.
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.
((hugs))
Lily….. it’s important to start looking for things away from cancer, things that catch your mind and you can put some thoughts into….. these are all the milestones of recovery.
I did a blog on the community a few years back which I can’t find now but this was basically the text from it ((hugs))
Cairns and the craggy mountain.
I took early retirement from teaching 10 years back. It was a stressful job so I enjoyed being my own boss (woodworker) and doing things that I could enjoy but this was all interrupted 7 years back when my rare Lymphoma of 15 years decided to go on the war path.
I think the speed at how my 3 years of treatment went was like being a cat caught in headlights and I very quickly was given a very poor prognosis so my wife and I........ and all our family and friends went on a battle footing as it was the only way that we would all get through it and come out the other end of the very dark tunnel still in a place where our minds we're in a good place.
Looking back now, even although my second Stem Cell Transplant was Oct 2015 the 2 years post treatment was very hard, very painful and full of rather scary A&E visits.......... I can honestly say it was only in the last 3 years post SCT that I/we actually started to believe that we had kicked this.
I was a rather calm person before this all started but did have an edge when teaching as I was 'old school' with how I ran my class, in fact I still bump into my old students (16-19 year Joinery students) and they would say that I knocked some sense into them and made them grow up but now I am so laid back I am virtually horizontal, everything takes longer, I am always last to finish food compared to being first, I can sit and enjoy the moment rather than moving on to the next thing.
On our 22 year cancer journey we quickly mastered the ‘today is a new day’ mindset and when the negatives came along - and there were lots, we never went to sleep without thinking about and highlighting two positives for each negative. Doing this developed a positive mindset that was to get us both through.
I see the cancer journey to be like a climb up a high craggy Scottish Mountain.
These Mountains have well trodden paths with little cairns (stones on stones) put up by the many folks who have walked these paths before us.
At each cairn the path divides in two - these are the points of decision, like..... How we deal with side effects.....? The mental and physical challenges.....!! The picking our selves up 'again' times......!! It’s scan time again....!! How can we move on...?
We do have to look very carefully at where each track will take us. Do we knuckle down and tough it out and keep climbing up or do we take the low path, the easy path and keep going round the hill and not reaching the summit...... not seeing that view for the first time.
When you look at the cairns they are always just on the tracks that will lead to the top. So each stone that is put on the cairns is a "yes, we can do this" decision......... keep putting the stones on the 'yes' cairns....... and every now and then have a look back down the hill and see the starting point and all the little cairns on the paths you have taken. The further you move on, the past looks very small and fuzzy at the edges.
If you keep walking the low paths you will see stones left abandoned at the side of the track where that hopes and dreams was lost.
