Moving through mastectomy – how it was for me

The Coronavirus pandemic of 2020 has, and will, change so much for so many, for a long time. At the start of the lockdown, I was working full time as a cancer rehab fitness trainer, a job I have adored for more than seven years. I was fit, and mostly worked outdoors. As the realities of lockdown and social distancing became clear I knew I wouldn’t be working much, but I imagined I’d use the time to tart up my website, do the book keeping, finish that book I’ve been writing for most of the aforementioned seven years.

And then, three weeks into lockdown, I found a breast lump – quite by accident, after I had been doing a load of boxing, holding weights, with a couple of clients on facetime (oh how quickly we adapted to not seeing each other IRL). I thought I had just inflamed one of my pectoral muscles.

I was wrong.

Going through a cancer diagnosis is odd, surreal even. It’s all a bit of a blur now, although at the time each waking minute was experienced acutely. Doing it at a time of global crisis just made the whole thing even more surreal.

Keeping my head together

I learnt for myself the value of cancer prehab, especially its incredible ability to help you to keep your head from exploding. My exercise of choice is to run. I am not fast, but I find a 5 or 6 mile plod, somewhere as pretty as I can get to, just sorts me out.

I experienced profound anxiety as I was going through the diagnostic process, especially during the time that I needed to make decisions about my treatment. I started to keep a diary of my emotions and I also noted my activity levels and it was extraordinary: on the days that I exercised in the morning I was less anxious for the rest of the day. That’s endorphins for you. I opted for shorter runs, normally 3 or 4 miles, on most days.

During the hours and days immediately after my diagnosis I was thrown right off kilter. I guess it was shock. I tried a little run but just could not muster the energy. The following day I was so anxious that my breathing was fast and shallow. I couldn’t handle coffee as it made me completely jittery and I had to resort to deep, mindful breathing just to regain my composure.

I gardened, which always soothes my soul.

Important note here – when we think of physical activity, we tend to focus on stuff like running or gym work, but activity that absorbs you both physically and mentally, like gardening, is of immense value. It ‘counts’ as exercise, and if it’s surrounded by nature, all the better.

Looking after my (physical) strength

I was lucky, as I was already physically strong, and I enjoy strength training and I teach it. I knew that my surgery would impact upon the strength in my arms and shoulders, so I worked on exercises that would allow me to go into surgery with strong muscles in the areas that I thought would be affected.

My programme of exercises was:

2 x set of 12 reps: Chest press, side raise, shoulder press, front raise, push ups, chest fly, upright row, triceps dip, lat pull down, pullover.

Strength to function

Knowing that my ability to lift using my shoulder muscles would be compromised after surgery, I practised lifting things using my biceps instead – not that I was planning on any heavy lifting, as it’s discouraged, but just so that I knew how I could move things around if I needed to, water the garden etc. So, I would tuck my elbows right into my waist and pick things up by bending only from the elbow, not moving my shoulders at all.

I also thought about the strength in my trunk and worked on the muscles that are needed to sit up, – I knew I’d need to be able to do this without pushing up on my affected arm.

I added into the programme 2 x set of 12 reps: sit-ups, ab curls, V-ups.

I had been given a leaflet of physiotherapy exercises to do after my surgery. I knew how helpful they can be. I have worked with women who swear by their effectiveness. I have also worked with women who have suffered months, even years, of pain, frozen shoulder and limited range of movement as a result of their breast surgery. So, while I was in hospital waiting for my surgery, I practised them, so I knew what they were meant to look and feel like.

Something I wish I had practised beforehand: how to get up out of the bath without using your affected arm(s). (I could not shower for the first few days but could have a shallow bath. You can do this when you still have drains in). I did it, from sitting, by bending my knees and scooping both feet to one side and under that hip, rolling to then kneel on both shins, then bringing one knee up, in order to stand.

Extra self-care

Way before we knew what we now do about cancer prehab, a wonderful cancer surgeon called Professor George Hanna taught me something. He would counsel all of his patients to ‘train’ for their surgery day as if it was what he called their own personal Olympics. He would encourage them to do everything in their power to go into surgery in the best shape possible. He was way ahead of his time.

So, for my Olympics I made my diet as good as I could. Loads of fruit and veg (after surgery I upped my protein intake, particularly red meat too). I ate as little sugar as possible and made sure I was well hydrated. I reduced my alcohol intake to almost none, even though everyone else at the time was downing ‘quarantinies’.

My plan was not complex, and if felt good to be looking after myself. Similarly to exercising, it was something that I could take control of, at a time that other things were waaay out of control.

Straight after surgery

This might sound extreme, but I walked home from hospital after surgery. I’d been indoors for 48 hours (mandatory 24 hour inpatient Covid test before I could go down into theatre) and although I was still a bit groggy and was trying to get used to the drains, it felt really comforting to be able to go home on foot. Of course, I’m lucky as my home is less than a mile from my hospital bed, but my point is that it was possible, and felt rather good, to go for a walk on the day I was discharged.

Apart from a couple of rest days, I walked every day after surgery. For the first couple of days just tentative short walks near to home. Walking with chest drains was fine (I had a sweet little Drain Dollies Bag to put over my shoulder) but I must admit I felt vulnerable. This is unusual for me. I normally feel pretty invincible and certainly not fearful of people but the combination of surgical wounds, drains, and Covid meant that I was very edgy and feared being bumped into. That passed once the drains were out.

I did my physio exercises religiously, and they helped. My ability to move my arm came back fully – it did take a few weeks, mind. This is a little film of the exercises I did at first. Once the drains were out (mine were in for two weeks) I could use larger movements without fear of moving the muscles around my ribs too much.  https://youtu.be/jmDNpV2UP5s

For the first couple of weeks after surgery I could only sleep on my back (some women need to sleep propped up, almost sitting, at first). Along with my physio exercises I also did some gentle back and neck stretches, as I was stiff from having to sleep differently. I was surprised by the degree to which I felt my chest muscles when I moved and stretched. I really had not realised how fundamental they are to our movement.

I was soon able to adapt my upper body exercises, so that they involved a greater range of movement. I built on the exercises that the physio had shown me, and added in small versions of the movements from my pre-surgery strength programme, but without any weights or resistance. This film shows the exercises I did https://youtu.be/qlMIrEgDc44

5k my way

I have been a part of 5k Your Way for a wee while, and I set up the lovely group that canter around Southwark parkrun once a month (when there isn’t a rampaging global pandemic).

On day 4 after my mastectomy I got a bee in my bonnet, as you do, and I decided that I was going to aim for 5kms on foot every day during my recovery.

It is a nice round number, and a distance that I know well and understand. It is the best part of an hour’s brisk walk (for me) and just over half an hour’s run.

And so that is what I did. Just walking at first, and then with Nordic Walking poles. The poles felt marvellous, and along with all the evidence about their effectiveness for women who’ve had breast cancer surgery, I can also say from experience that they helped me progress both my range of movement through the shoulder and I think they helped to make the puffiness from surgery to go down. (Poles when used properly are known to help encourage lymphatic drainage.) The poles helped me to increase the intensity of my daily exercise session.

Now, don’t get me wrong – this was not all plain sailing. There were a couple of days that I felt really down. Sometimes my arm felt very uncomfortable as I exercised (there was a dragging sensation as if my limb might come away from the shoulder joint). And the numbness from surgery feels really odd, like your sleeve is twisted around your arm, even though it isn’t. A mastectomy wound feels for all the world as if you’re wearing a really really REALLY uncomfortable bra.

On Day 13 (lucky. Not) I overdid it. Walked too far, used the poles too enthusiastically, didn’t have my then obligatory afternoon nap. I had no idea that ‘just’ surgery can leave you so very, very dog tired. So, I took a rest day, only doing my physio exercises, and then went for a gentler walk without the poles the day after that.

And then, on day 21, my daily 5k included a very tentative little jog. It must have looked hilarious – I was trying to work out how to run without letting my chest bob up and down. The following day I did my first proper run, and it felt epic.

I went back to work – gentle sessions only, and with no weight training – a few days later.

Weights – where many fear to tread

Strength training is incredibly helpful, but many people are unsure where to start, particularly if they are recovering from any illness or injury. After breast cancer surgery many women don’t know how they can safely rebuild their upper body strength without causing injury and without triggering lymphodema.

The general rule is that you can return to ‘normal activities’ 6 weeks after surgery and could start to increase resistance (i.e. the amount you lift) after 8 weeks. I started using light hand weights during week 6 and have gradually built up since then. I made a film of these exercises.  https://youtu.be/TruXQPaCvXo

What next

I guess we might be divided into people who want to go back to ‘normal’ after cancer treatment, and those for whom it is a catalyst for change, for a better quality of life, or to do those things they’d always wanted. I’m not sure yet which path I’ll take, but I am training to run a 10 mile race in the autumn.  (I’m sure it’ll be cancelled, in which case I’ll run the distance on my own and then reward myself with a slap up breakfast rather than the usual race medal and t-shirt).

It is nine weeks today since my mastectomy and thirteen since I was diagnosed. I have been able, cautiously, to go back to practising yoga. You get a lovely stretch across your mastectomy scar in warrior pose. This week I managed my first 10k run. The drug I will be on for 5 years (tamoxifen) has not yet caused the myriad side effects that it might and so I feel like I’m living on borrowed time a little.

I am deeply grateful for the care I have had, and the kindness and support that came my way.

And I feel well.

rehab run

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