Post chemo recovery

Hi HBWren and well done doing the things you are doing…… you may have read that my Lymphoma journey is rather different.

My Consultant told me that going through treatment is 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 are ir have been on so it most likely will take much longer than you would think to get back to some normality.

The Fatigue can take time to clear but keeping some regular routine going is going to help this but you will have times that you need to take some time out……

I would say it took a good 18 months for me to say that I was totally over the fatigue but this was following a very demanding Allo (donor) SCT.

It took a good 2 years before I could say that my neuropathy was gone and even although I am 9+ years out from my last treatment my bloods regularly are at the lower end of the acceptable ranges……. But this is my new normal…….. and as I said I am over 9 years out from treatment, I turn 70 at the end of the year and I am living a great life.

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.

You may want to check out Lymphoma Action who run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey with one monthly group specifically covering remission.

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.

You are doing great.

Thank you. That’s all really helpful. I think I’m maybe expecting too much of myself, and need to be a bit more realistic in my expectations! I feel so much better that I think I can do more than I actually can!!

At 2 months post my second SCT I was still in a wheelchair and was getting physiotherapy to get me back on my feet again….. you are doing great but we tend to underestimate how much our bodies go through. 

Do check out the links I have given you.

Yes I will, thank you 

That paper by Dr Harvey was extremely helpful. Thank you 

Sorry for not getting back to you sooner but I have just been out to B&Q for stuff for my next project - life does return…… to my wife’s delight as she has a long list of jobs that were missed years back when I was going through treatment

Even although I am 9 years out from my last treatment I still use the headings as my (our family) motivation to keep moving on with life……. You have to become proactive

So get a note book or some sheets of paper and put pen to paper -

So a page per subject heading. Start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards. 

When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements. When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.

The headings would be:

What steps am I taking to regain trusts in my body?

What steps am I taking to regain trust in myself?

What steps am I taking to overcome living with uncertainty?

What steps am I taking to deal with the world?

What steps am I taking to regain mastery and control of my life?

Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.

Hi HBWren 

I went through 3 months of escBEACOPdac, finished first week of June 2024. I was knackered during treatment and didn't have much energy for anything apart from seating down on a chair / sofa. Routine house chores were challenging and I 'delegated' most of them to my partner and parents... So I was super fatigued. I live only half a mile away from the hospital and had to take a taxi several days cause walking was just such an effort. I was neutropenic throughout too and hemoglobin dropped to about 85-90 the last two cycles so breathlessness and high heart rate were also common. I would say red blood cells are a better indicator for understanding fatigue than looking at the white cells.

The following two months were a bit of a write off too. I went on a work training first week of August and walking out of Frankfurt airport was as exhausting as running for an hour. I started to recover aerobic capacity but things like vacuuming or crouching to grab things would still make me tired. I would also crash around 6-7pm most days so I was just working and doing little else.

Until October I did need to sleep at least 9 hours a day and I was waking up super stiff and sleepy too, I started to do stretchings in the mornings (although I did slack a lot too) and tried to do little walks around the block (i.e. 5 minute slow walk every couple of hours), then tried to do 45 min walk every evening, at slow pace. I also started to do indoor cycling, because you don't have to 'carry your body' doing this I found it easier than walking, and there was little impact on my knees and back. I put over 10kg during treatment so that was also noticeable when trying to be more active.

Since November I have improved a lot, I am now at the point where I am not as normal yet but I can cope with a slow run and with 1 hour cycling routes. I can walk for a long time and not get tired anymore. But the process was slow and I had to push myself a little bit - I checked with the doctors first, as I didn't want to overexercise or put strain on my heart. 

Each person is different and I have read a lot of stories from people who have fatigue for a long time. I personally think I have been lucky with the recovery and it has probably been a bit quicker than expected - I am 32 and I did treatment for 'just' 3 months. I believe that it if I had done 6 cycles (so 4.5 months) the recovery would have been so much slower and longer. 

Thank you, that’s helpful. I totally relate to you crashing in the evenings. Unless I’m out for something, I’m nearly always in bed by 7. Im now 10 weeks post chemo. So I suppose if I look at what I was doing during chemo, which was basically nothing, I’ve come a fair way. I can walk for a good hour at a steady slowish pace without having to sit on a bench to rest mid way. And I can go 20 mins on the bike at the gym, followed by weights, and then 20 mins on the treadmill (albeit walking) But today I walked the dog and have basically done nothing the rest of the day. Normally I’ve more energy at the beginning of the week and it tapers off toward the end. So I think today took me by surprise. Perhaps I’m being too hard on myself. I just get frustrated because I want to do more I’ll be interested to see what my blood work is like next time I have a test. 

One of the things I underestimated during recovery was the 'emotional toll'. I had a call every couple of weeks with an occupational therapist (this was provided through work health insurance) and she explained to me how I wasn't getting tired just by exercising or physical activity. 

Talking to people about your experience, talking about the trauma, processing the after-treatment emotions, stress... can also make you super tired. I remember meeting some friends after treatment and having a 2 hour chat and feeling knackered the day after. I then learnt I shouldn't meet people on consecutive days and just give myself time with that. I don't know if it was the emotional implication or just that my brain was not ready for this deep conversations after (sounds harsh but it is how I was) being isolated from society for 4-5 months. F2F I only interacted with my partner and parents, all other interactions were on the phone or Teams at max...

You've come a long way, I would say you are doing pretty well if you manage to squeeze an hour of gym workouts a couple of months after finishing treatment. 

But yeah, for me it was the same, I would be so tired on Fridays, then I'd go on to sleep 11 hours on a Saturday!