In remission but feeling down

Hi M.A.C. and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.

First rant away, this is what the community is for

I don’t have FL but was diagnosed way back in 1999 with a rare incurable but treatable type of skin NHL Stage 4a and although my NHL ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

The pandemic has played havoc with various areas of the NHL journey essentially for those who were diagnosed during the pandemic and were told to hide from the world.

My story is rather different (hit my community name to see it) as part of my journey I had two donor Stem Cell Transplants (June 2014 then Oct 2015) so I was shielding for two years before the word become a thing then obviously was immediately put in the Clinically Extremely Vulnerable (CEV) group last year.

I actually found it simple to navigate the lockdown as we had already developed the ability to define how we lived within the limitations rather then let every little ‘what if?’ defining us.

We don’t let what is going on around us restrict our lives. We refuse to live under a canopy of fear. We simply assess everything we do, who we see, where we go…..

We have still had some short holidays, went out for meals, enjoyed the amazing area we live in and done our best to live life, a life that has been hard fought for.

M.A.C. said:

Is is normal to still feel tired all the time,  after finishing my chemo in February?

The simple answer to your question is a big fat yes. We don’t totally appreciate what our bodies go through during treatment and how king the physical and mental recovery can be so 8 month out and still felling tired can happen.

It took me about 2 years to say I was anywhere near my pre treatment physical self.

What regular activity do you do and when I say activity U mean physical and mental?

You may also 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.

Happy to talk more as this is one way you can help move this forward.

Hi Mike

In terms of physical activity, not a lot, my plan was to rejoin the gym but with covid, I'm reluctant to go. I think this is part of the problem, my life seems to consist of getting up, going downstairs to my office, working there till lunch time, having a bite to eat while watching something, then back to work until 5.00, then eat an evening meal and then watch TV/read.

I'd also managed to drop around 3st from just over 16.5st, from the initial asthma diagnosis to the halfway point in my treatment. However the last 3 rounds were really hard and the only way I could keep working was lots of sugary foods and so I've put most of it back on, which is real annoying.

I've also been suffering some back pains which they aren't sure what is causing it but exercise/walking seems to exacerbate this and when its bad the spasms are excruciating.

I suppose like most people you expect to feel a lot better once your in remission but I'm finding that isn't the case. I just read the paper you linked to and I suppose getting cancer in the middle of a global pandemic wasn't the best of timing but then I don't suppose there is never a good time to get that diagnosis.

MAC

Hi MAC you will see from my story I ended up in a wheelchair after my second SCT so had to have lots of physiotherapy for about 4 months. Combined with the days sitting in one place, left over pain where my mass was and having Spinal Osteoarthritis the road to recover was long and very painful.

My Heamatology Specialist Nurse has been a great support during these challenges but at the same time absolutely ruthless in getting into my face with regards to exercise so I had to push through the pain barriers.

So initially between the Physiotherapy, attending a cancer specific circuits class at our local Maggie’s Centre I got into a rhythm and regularly (even during all the lockdowns) in any weather have been doing 4 miles most days.

I had lost 29kgs during treatment so was put on a high protein diet to build me up….. but forgot to stop so was told last year going into lockdown I was pre-diabetic….. so changed my diet and have lost about 25kgs and feeling great.

I have talked with others on a lymphoma specific support platform that they are going to the gym at silly o-click as some gyms are open much longer hours and often they are the only ones there.

I think it is all about how much you want to overcome this, I found it easy to say tomorrow will do……. But between my Specialist Nurse and my long suffering wife I was dealt loads of tough love 

Hello MAC,

I had a similar diagnosis a year before yours after a lot of uncertainty.  It is lousy luck to be immunocompromised during a pandemic, especially since all my neighbours & friends think Covid's just gone away.  If we had a similar daily death toll from plane crashes, there might be a more determined response! 

You have your two year Rituximab programme.  I'm 2 years post chemo with Bendamustine instead of RCHOP.   Neither of us will have anything like normal immunity.   Every ache and pain gets viewed through the lymphoma perspective and falling asleep on the sofa gets to feel normal. 

Gyms are scary because not everybody wants to wear a mask, even if they're panting, coughing and (sorry about this!) spitting.  So, it's home exercise programmes with whatever kit I can find.  Now that lockdown is over, you can get some good bargain stuff on Gumtree, weights, bikes, benches, etc.  Better than crowded places.

Shielding right now goes against the popular spirit of reckless optimism and I feel like a wet blanket refusing invitations and group events.  It's lonely.  The loss of energy and fitness has been the worst side effect, but I do find that just being outdoors helps and that every time I do manage to do a proper walk or exercise session, I feel better for it.  It's starting from a low fitness base that's so discouraging.  But Mike the Highlander here came from an even lower point, so he's my comeback model!

Cecren

Thanks for the replies.

I've been feeling poorly for a few weeks now, with similar symptoms as before. I had another cat scan yesterday and I'm now waiting for the results.

I was only confirmed in remission in March and found the chemo treatment very hard. If it has come back I'm not sure I want to go through chemo again.

Sorry to hear that you have been poorly, let’s see what the scan says and take it from there.

FL like other low grade NHLs is incurable so it is a life long journey. Let’s hope that this is not lymphoma related but is your body still in recovery post treatment, yes even 6-7 months post treatment

I though I'd update this post, turns out my original symptoms and those that had come back had nothing to do with my lymphoma, so what should have been a relatively straight forward diagnosis was missed, it did mean they found the lymphoma.

So all in all I'm feeling a lot more positive, so thanks for the words of support.

MAC

Hi MAC M.A.C. thanks for the update and great that things are good.

Learning to live and navigate the post treatment journey takes time. Like me, you have a condition that you will have to learn to live with - the most important thing is not to let it define you.

Talking on here is helpful but you may want to look further where you can actually 'talk' with others who understand.

Do check out for a local Maggie's Centre as they run Heamatology Support Groups, although online at the moment our monthly group in The Highlands is great. Do also have a good look at Lymphoma Action as they run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service.

The great tool I gave you at the very start is important. Looking through the great paper After Treatment Finishes - Then What? by Dr Peter Harvey once a few week in the early days can help as you can then start to set goals to move your life forward in each area of the paper.