Today I wanted to write about exercise during and after treatment. I realise that energy and exercise go hand in hand but I am trying to focus this on the sports side of things rather than the energy levels. Again after having a scan of what I have written, it is a bit too detailed and I got myself lost into a long text again! I need to get better at this blogging thing.
If you haven’t read any of my previous entries or any of my activity, I started with periodic fevers at the end of June 2023. It took 6 months to get a full diagnosis. One of the features of Hodkin’s is that you get fatigued, and you lose weight, however I personally did not lose any weight and the fatigue only really kicked in after months suffering from fevers.
To put some context, at that time (June 2023) I was playing 7-a-side once a week for an hour, doing a 5-6 km run (pace about 5.30-5.40 min/km) another day, and doing two indoor cycling trainings per week (about an hour). Every couple of weeks I would cycle to work (13km each way) one day just for the sake of doing something different. If you are a occasional cyclist and track your power numbers, I had an estimated FTP of 220-240W and I was 82kg or so.
So, I could say I was relatively fit and I was putting about 5 hours of moderately intense exercise per week. I had been fitter before and more active, but for the previous 6 months I had been commuting an hour each way to work (I moved in with my girlfriend and we had to compromise on locations) and that meant I had a bit less time for exercising. I was working as a scientist mixing desk and laboratory work so at work I would stand and walk around the lab for a couple of hours and I would put 5k steps just at work, then add the other exercise bits on top and I was averaging 10k a day more less. I like to put actual numbers here just to have a reference for other people.
I have always been an active person, I played competitive football since I was 7 years old until I went to uni at 18. After that I continued playing a couple of times a week and started running couple of times a week. This sounds a bit irrelevant but just wanted to make the point that sport has always been a fundamental part of my life. It gave me joy when I was a kid and as an student and later an adult it was my way of venting, releasing pressure and stress and just making me feel better. Most of my childhood friends played football with me and throughout the years I kept knowing people through sports as well. I had a relatively stressful job for a little over 5 years after finishing uni and doing exercise was my way of coping with the stress of the day. If I didn’t run or play football I would not sleep as well and I wouldn’t have the high energy level I needed to do my job. I was not able to just spend more than 2-3 days without exercising and not going mad.
Back to the storyline, when I started with the fevers, I wouldn’t exercise until the ‘fever cycle’ was over, but after that I would be able to get on my bicycle for over an hour without feeling tired, or I could run around for 30-40 minutes at ease at my normal heart rate and pace. Things changed at work and I was made redundant, so I spent a couple of months looking for the next role and this meant I got quite a bit of spare time to go for walks, run and cycle. I wasn’t feeling tired or fatigued and so I wasn’t suspecting anything serious. Fast forward 3-4 months, the fevers were making me really tired, and with the frequency of these increasing, I stopped doing much. When I did the CT scan over Christmas and I got the report saying enlarged lymph nodes here and there, the stress started to eat into me. Referral and waiting times meant more stress and me not being in the mood of doing much. From December until the start of treatment in March I sort of loss my form.
Diagnosis and treatment plan meeting was in mid-March and I went with a list of questions to the haematology appointment. One of the first 5 questions was whether it would be beneficial to exercise and if the doctor would recommend it. The doctor looked at me and said something like ‘if you find the energy to do something, go ahead, but this treatment is very intense and it is going to knock you off, I doubt you would get a chance to even do very light exercise’. My ego made me think that ‘yeah but I am fitter than the average Joe so I might be able to squeeze in some training!’. How wrong. I had heard about people being told to get fit before treatment to sort of build stamine and what not (but I had to start asap and I was poorly so this was not an option); I also heard from others how they tried to go to the gym or do exercise at home to maintain muscle during chemo… That wasn’t gonna be me.
During my 3 months of chemo my most active days were probably the Saturday/Sunday at the end of the rest week (= just before starting the next cycle). During the first couple of cycles I probably managed to put ~10k steps those days, for the 3rd and 4th cycle I was probably doing 8k at best and only one of the days. I just couldn’t do more, I was knackered, my haemoglobin was low and my body was just simply not able to move enough oxygen through my muscles, plus all the drugs of the chemo were just making the body work so hard in other ways. Mentally I wasn’t in the mood or pushing myself, I was a bit scared of putting too much strain on my already strained body. Walking slowly to the hospital and finding myself at 130-135bpm hear rate was scary enough! (TIP – remove your garmins and all the tracking devices during treatment, you add another level of control over yourself which I am not sure it helps)
What this meant for me was that I had a hard time ‘disconnecting’ during the treatment. As said, exercise / sport had always been the way for me to chill and have a good mental health, and I never really found a different way to deal with things (no book, movie or anything would substitute that). I was very stressed and anxious during the first cycle, for a number of obvious reasons, and I didn’t have the tools to deal with that. When I was not in the hospital I was in bed or my sofa. Netflix didn’t cut it. Also, my heart rate was already around 90 sitting down (before treatment this would be ~50-55) so I felt restless and nervous. And when you are so restless you are also less likely to go for a walk or something, I think.
During the first couple of cycles I didn’t even have much energy (mental and physical) to regularly walk to the hospital (about 10 min walk away on a good day before getting any chemo, 16-18 minute on chemo days). After these first two cycles I started trying to at least walk to and back the hospital on chemo days, since I realised this was going to be the most I was going to be able to do on a regular day. This meant that treatment days I was managing ~3k steps a day. The days I didn’t go to hospital I was trying to at least go to the shop (masks on!) and back, which was like 400 meters away. I wouldn’t carry more than just a bottle of milk, I just didn’t have the strength to carry much, so my girlfriend or my parents were helping with that. But basically those days I wouldn’t go to hospital I would just do 2k steps.
I remember driving some days to a nearby park to show my parents different areas around where I live, and then after 5 minute walk just telling them ‘sorry I just can’t do much, my legs are aching and I feel breathless’. Those were just bad days. Having my parents look at me being so weak and so incapable of even walking at slow pace, feeling so useless, in a way, was hard to take.. My vent valve was gone, my ‘disconnecting’ routine was gone, I couldn’t do much without getting exhausted. And this was getting me more stressed, adding to the pressure I already had on me. What used to be a simple task like chopping some vegetables and cooking basic food was getting me tired. My arm would hurt just by stirring the food a couple of minutes. Putting the dishwasher or the washing machine was also a big hassle. Forget the vacuum cleaner. Simple ‘anaerobic’ moves were very hard.
All in all, treatment was awful from the exercising point of view. Without being able to exercise and being bored at home, my main source of joy was eating. The steroids made me soooo hungry, it was so difficult to stop eating, I was never feeling full. Day 1 of chemo I weighted 80kg in the morning (82 in the afternoon after getting over 2L of IV drugs and saline and not peeing much)… Final day of chemo I was 90kg. My consultant kept saying ‘you’ll lose it’ and I understand there is a worry about losing weight during treatment but no real concern about adding some pounds. But I haven’t lost any yet!
So what came after was a long recovery. By the time my treatment was done I sort of knew this was going to be a long road. The body had paid some tolls… I was swollen because of the steroids, I was heavier, anaemic, slower, I had neuropathy on my fingers, I was not walking straight, my balance was not 100% there. My muscular mass was gone. My arms were weak and fluffy, especially the arm where I had my PICC line. I couldn’t take the shopping bags for more than a minute without having to rest.
Three weeks after finishing the 4th cycle I started to do some walking, little by little. It was not ‘a bit more every day’ but ‘a bit more every week’. My muscles were aching after the walks and the morning after I was feeling knackered, something that would never happen. I had to stretch and deal with sore legs and sore back. One thing that was really shocking was how stiff my body was, so I started to stretch in the mornings to try and help with that. Even my skin was hurting, I was so swollen and big, and now I wanted to generate muscle again… That I was stretching my skin! I felt so weird moving such a heavy body, my mind was not understanding how hard it was to move while some months ago it was so easy.
The recovery post-treatment is slow. You have to give yourself time and be patient. It’s not just the muscles, it’s your red and white cells that need to be generated, it is your brain that needs to adjust to the new reality, it’s a bit of everything. I started to log my walks as activities on my watch to see the evolution and I am just looking back at Strava… The first week after treatment finished (so this is after the rest week, which I consider part of the cycle), I was walking about 3km in 45 minutes, 5 days a week. The next two weeks I started doing 4 or 5 km every other day. As said, the day after the walk I would feel knackered, so I needed a lot of recovery. This was all my activity during the day, as I was working from home and seating the rest of the day.
My first cycling activity after 6 months was a month after treatment, and I did 96 watts average during 18 minutes. For those who know about power, this is a bit of a joke. But at the time it felt like a big thing. I was trying not to go over 120-130bpm as I was just trying to get things easy and not force my out-of-shape cardiovascular system. I kept going and doing 20 minutes of indoor bike two times a week, increasing about 10 watts per week in my intensity. To add to the muscle pain I had to add the pain when seating. I was much heavier and I was not used to cycle so my butt was really hurting.
July – August I continued walking about 5km per day, 4 or 5 days a week. It was a goal I had set for myself to try and get my shape back, but it was challenging, more than I thought. First week of September I went out on my bike for the first time in almost a year, and did 45 mins… god the legs were hurting the next day but it felt so good to feel a bit normal again. The breeze, the feeling of freedom…
September had good weather and so I was trying to get out and cycle 1 hour a couple of times per week, trying to stay at 150bpm average to not push it too much. October was a bit of the same and I had some holidays so I didn’t improve much in terms of fitness.
November was when I tried to push myself a bit more – I had another review with the consultant and she was happy with me doing more exercise so I felt good testing myself a bit more. I would do small stops when cycling to avoid doing continuous effort though, just in case cause I am a bit paranoid. I was around 92-93kg, which you feel a lot more when walking than when cycling. The impact on the knees and hips is obviously not the same and while I felt pretty comfortable cycling, I was still on the 5-6km range for walking. Running was just out of the picture, I had tried to do some short efforts but the muscles and the joints were just sending me warnings!
My first run was on the first week of November, 5km at 7 min/km at an average of 152bpm. Before treatment and cancer doing this at 120bpm would be normal. I was sore for three or four days and decided running was going to be something for later. Tried again a month later (3.8km, 6:40 min/km, 158bpm) but it was still HARD.
So yeah, it takes a while. Now first two weeks of February and I am finally feeling a sense of normality. I know for others it has taken a lot longer and a lot of people still have difficulty going up the stairs, so I consider myself lucky in terms of the exercise I can do to this date. I am still over my weight, I am 95kg, which is 13kg more than before treatment lol, but I feel more athletic and with some diet and a proper routine I feel I can start dropping some of the extra kg. Slowly but surely.
I am now able to push 208 W in 30 mins indoor and two weeks ago I cycled 33km in 1h20, far away from where I was but getting there much quicker than expected. I ran 7km last week without stopping and I was so fucking proud of myself. My best km was at 5:48 min/km. Who would have told me 6 months ago.
If you have read until here you have a lot of patience. I need to start writing this blog in a proper way and structure the text properly, this is like a brain dump and I am putting no order on my thoughts. Should get better. But writing this is hard, digging through your memory and your feelings, and by the time I get to ‘the end’ I am so tired that I cannot be bothered checking the text again. Just hoping that at least one person finds this interesting or relatable.
