Part 10: Let’s get physical, physical; I wanna hear your body talk

Negotiating a path back to fitness post-surgery and through chemo

Yesterday I started week 3 of The Couch to 5k app. I have chosen Sanjeev Kohli to be the voice to motivate and guide me through; I started with Michael Johnson, and then dabbled with Sarah Millican, but have now settled into a rhythm with Sanjeev. At least as much of a rhythm as you can have when trying to fit fitness around chemo and its side effects.

And I was surprised by the apprehension I felt, when Sanjeev (or Sanj as I’m allowed to call him now we’re into week 3) announced that this week, we would be running, uninterrupted for two, 3 minute intervals. I had found week two – which involved running for 90 second intervals – pretty easy. But to double it?

“It’s not possible” I caught myself thinking. And then countered that with a lecture: “3 minutes is no time you idiot! You used to run 30 miles a week!”

The thing is, of the many freedoms cancer steals from you, confidence in your own body and your own abilities is perhaps one of the most debilitating.

It starts with a lack of trust in its inner workings: I mean, I got cancer despite all the odds! My body had really let me down: despite all the running, all the healthy eating and not smoking I inflicted on it, it still failed to shield me from cancer. And this worries me now for so many reasons. Firstly, because you read about the benefits of this and that to fighting and staving off cancer, especially the benefit of exercise, it is easy for people like me (and there are many) to say, “well…it didn’t help me before so why would it help me now?”

Secondly, when I question my partner about his own health choices, his reply is: “well you got cancer and I don’t know anyone healthier than you so what’s the point?” and I can’t really argue with him, because it is a thought I have had time and time again myself. Now, the idea of him getting ill fills me with a fear greater than that of my own death – but still we joke: “if the statistics suggest that 1 in 2 of us will get it, we’re probably ok now.” Except that statistics have let me down before, so I no longer hold them in much regard. But I joke nonetheless, because what else can I do?

All I can do is look after myself and get through this the best way I can. And for me, regardless of any health benefits, exercise is just a way of being; a way of staying happy and centred; a way of feeling alive. So having to come face to face with this new distrust in my capabilities and my body itself has been both a tough and frustrating challenge to overcome. But really, it shouldn’t be.

Study after study has proven that the benefit of exercise and movement to recovering from surgery and getting through chemo is unarguable. Yet, when it comes to seeking help and advice that is appropriate to my age and prior fitness level, the cupboard is bare.

This support should begin before you even begin treatment. But it doesn’t. Well it didn’t for me, and I have since heard my story echoed back at me through the experiences of other young people facing a cancer diagnosis many times.

So, you get your diagnosis, and you deal with the emotions mentioned – the broken trust between you and your body and its internal workings.

And then, you have surgery, and you lose confidence in your body’s physical abilities too: when getting out of bed, or even going to the loo seems an impossible task, the idea that you may ever feel able to walk your dog again, let alone run a half marathon or complete a mountain bike track, is a mere pipe dream.

My surgery was performed on December 11th 2019. And, in many ways I was very lucky. The positioning of my tumour meant its removal was relatively straight forward. Mostly it was completed laparoscopically (by key hole); only one larger incision was needed by which to remove the tumour, half of my colon and surrounding tissue and 26 lymph nodes. If your tumour is in your rectum, things can get quite tricky and in many cases a temporary (and sometimes permanent) stoma is needed too. Another young bowlie like me who I connected with via Instagram has a scar running from her sternum almost to her pubic bone. Mine pales in comparison.

I am now quite pleased with my scar. But, I am yet to face a trip to the beach or river, when I will don a bikini for the first time. I don’t know how I will feel. I have always been quite proud of my stomach, it’s always been on my list of ‘good’ features. We can never underestimate the impact of the physical changes any surgery has on your body and consequent body confidence. People tell me it’s a small price to pay, and I know this in my head, but anyone who’s been through major abdominal surgery will tell you, it’s not so easy to convince your heart.

The day following my surgery, I was visited by a couple of enthusiastic hospital physios, keen to get me out of bed as soon as possible. Sadly I was too distracted by nausea and vomiting to play ball. They quickly admitted defeat and left me with some breathing exercises that I was in no state to remember. And they didn’t come back after that – I was kind of left to my own devices.

I remember the poor Health Care Assistant, Eddie, who had been tasked with bathing me and changing my bedding that day; I couldn’t even take my own pants off and I watched, embarrassed, as he manoeuvred them down my legs, and around my catheter awkwardly whilst I could barely keep my head up.

I spent the next few days drifting in and out of an analgesic sleep that was haunted by disturbing dreams – punctuated by bouts of vomiting that were unresponsive to any of the anti-nausea drugs. Each wretch induced a stabbing and entirely draining pain.

It wasn’t till many days later that the registrar visited to explain that the reason I was being so ill was because my bowel hadn’t started working yet; anything I put in my mouth had nowhere to go except up. She told me I was drinking too much and put me on a liquid diet. Later I’d be told off for not drinking enough…like a naughty child.

At some point my South African anaesthetist came to visit me:

“I’ve popped in a few times but you’re always asleep” he chastised.

And then I was kind of just left again. Eventually my Patient Controlled Analgesia was replaced by paracetamol and liquid morphine and I was able to stay awake for longer periods. But nobody came back to help me get up and moving again and I felt at a loss: I did not trust my own body; I couldn’t do it on my own. I felt trapped by my catheter which made just getting out of bed into a chair a challenge – and I was in a Catch 22: they wouldn’t remove that till I was more mobile. I asked for a stick to help me feel safer but none was to be found. I had to wait for Steve to come in of an afternoon and waddle around the ward with me – dragging my piss-filled bag along for the ride.

Doctors, surgeons and matrons criticised my lack of activity like I was doing it on purpose – but I had felt scared and unsupported. Perhaps youth and pre-surgery fitness levels meant that the professionals assumed I would bounce back with ease and without needing much assistance. But I didn't. I needed a lot more help than I got. And I know they were busy and understaffed, but I don’t believe I deserved to be made to feel like I was such a let-down, like it was all my fault.

The physio only returned to tick the box that said I could walk around the ward and wasn’t in danger of tripping so that I could be discharged. He attempted to answer my questions about what I could and couldn’t do when I got home, but he did not seem to know. He suggested I talk to my surgeon…

I was sent home with no instructions for post-surgery wound care, activity levels or rehabilitative physio.

I tried to get active on my own as best I could, but unbeknownst to me, I was harbouring an infection (thanks to the lack of surgery after-care). And this made me feel like even more of a failure, because moving was becoming increasingly uncomfortable and difficult, not less. I spent Christmas hobbling around, unable to sit or stand for very long at all. I tried to get out on some walks, but my wound had been left uncovered and I was oozing through my clothes. It made sitting up for Christmas dinner and board games tiring and painful.

Eventually, when the oozing did not desist, the pain was sharp and stabbing and stopping me from sleeping at all, we decided it was best to get to the GP – a task not easy when surrounded by bank holidays. An infection was diagnosed and swabs taken – the GP struggled to hide her disbelief at the poor after care I had been offered; she couldn’t believe that I’d been left to ooze into my clothes.

A week of anti-biotics did nothing to ease my discomfort, so a return to a different GP left me with oral morphine to help me sleep but to be honest I was so concerned about constipation (my bowel was taking a really long time to wake up – see Part 3: The Problem with Positivity for more detail of my post-surgery struggles) that I only used it once.

Eventually my infection cleared, but by now I was already a couple of weeks behind where I could have been, and even more unconfident in my body’s abilities than before.

But, determined, I turned my attention to walking and pottering around the house. I tried to get a little further each day, do a few more chores and get my step count just a little higher.

It was around this time that my Mum came over from Australia to stay with me for a while and with her help and encouragement I started to explore the support offered by local charities.

We started with a visit to Star Throwers in Wymondham, a cancer charity that aims to ‘support people to take control of their cancer journey by helping them to become well-informed about their cancer and all of their treatment options – including clinical trials and alternative treatments.’ They ‘also help people to cope with the effects of their cancer and cancer treatments through …wellbeing support, including complementary therapies, nutrition talks and advice, lymphoedema support, gentle exercise groups, counselling, writing therapy, and support groups’.

I still wasn't able to drive myself so we sought out the help of Steve’s mum Esther and had a lovely day out including a pub lunch – although I was still quite uncomfortable sitting upright at this stage.

Mum, me and Esther (left). Mum (clutching freshly baked bread) and Esther (right).

And Star Throwers is lovely – it has a huge roaring fire and endless tea and biscuits. We chatted to a volunteer about what they offered and I was booked in to talk to the oncology nurse specialist. I have since accessed free massages, with very understanding therapists who were able to work around my surgery discomfort. I was even booked in to see a reflexologist, but then covid-19 put a stop to that. I was planning to attend one of their yoga sessions too, but at that stage I was just not strong enough and was still feeling pretty distrustful of my abilities. But I was able to borrow a book about cancer and fitness from their extensive library in an attempt to find out something more concrete about what I could and couldn’t do and when. Despite all this, I did leave my visits there feeling a little out of place; I am a lot younger than most of the other patients I have come across there so far.

Our next stop was the Big C Centre based at the Norfolk and Norwich University Hospital – just down from the Weybourne Unit where I would soon start receiving my chemo. Like Star Throwers, The Big C Centre provides valuable information about diagnosis, treatments, side effects and recovery. It is also lucky to be able to employ a team of trained staff alongside dedicated volunteers so there is always someone on hand to provide knowledgeable emotional help, support and complementary therapies. And it definitely had a more modern feel to it than Star Throwers. There were even a few younger faces, but not many. I was able to chat to a nurse there and then about some worries that I had and was also booked into a session with a financial advisor and group talk about diet and exercise. We walked away feeling happy with a pile of reading material under our arms, covering a range of topics including fertility, sex and contraception and chemotherapy: including the first leaflet that I had come across that was actually aimed at younger people and bowl cancer. It was published by Bowel Cancer UK – it included some really useful lists of questions to ask at the different stages of your treatment and helped me realise how many unanswered queries I still had.

These charities do amazing work and I am so grateful to have access to them – the only problem is, that support specific to younger people is still very sparse.

The following week we trekked back in to The Big C Centre by bus for our ‘diet and fitness’ talk. I was the youngest person there – by about 20 years. My Mum came along for moral support, and I am convinced that the other attendees assumed it was the other way round.

The talk about diet was useful, although there was not much that I wasn’t already doing. It was good to hear a lot of the cancer diet myths debunked though. And it was interesting hearing how other patients were adapting and, in my mind, unnecessarily restricting their diets based on untested and unverified information offered to them by Doctor Google.

The exercise session, however, was definitely aimed at older people and people with a limited history of exercise and fitness knowledge. And although I definitely don’t want to denigrate the work that anybody does to support people with cancer, it just wasn’t right for me: I felt pretty patronised and again, was unable to access much information that was relative to me, despite my questions. We were sent away with a ‘Move More DVD’ made by Macmillan which I am sure has been a really helpful tool to lots of people – but again it was definitely not aimed at people like me. The music is fairly uninspiring – probably limited due to licensing laws – and it only features participants who I guess would be in their 70s…lots of polo tops. I definitely felt, when I got home, that sitting down to complete the workout was a pretty soul destroying experience. So I stuck to walking.

I have written about the importance of exercise to getting through chemo in previous blogs (see Part 6: With a Little Help from My Friends) but I think it’s worth exploring this further. According to Sarah Russell, a ‘Clinical Exercise Therapist’ who specialises in bowel cancer rehabilitation and writer of ‘The Bowel Cancer Recovery Toolkit’ (which sadly, I only discovered once I’d already started my chemo), there is lots of evidence that ‘rehabilitation and exercise therapy can completely change the course of recovery and long term outcomes for people with bowel cancer, helping them to rebuild confidence and enabling them to lead a life of acceptance, movement and health, rather than one of fear and inactivity’. Her book refers to scientific research that supports the idea that exercise will help you overcome the ‘debilitating side effects of chemo and radiotherapy’, citing fatigue, muscle loss and weakness. She suggests it can actually help your body tolerate treatment and that there is even emerging evidence that it ‘may help some treatments work better’ and ‘help your body fight the cancer cells’. Some studies show that exercising after a diagnosis of colorectal cancer can improve your chance of survival by 20-30%.

Russell’s finding can be supported time and time again with other studies, primarily form the US, Australia and Denmark. A friend living in Copenhagen recently sent me the article ‘Regular Exercise Helps Patients Combat Cancer’ published in The Scientist. She thought it might help motivate me in my quest to stay active – and it did indeed, discussing in some detail how ‘the combined results of approximately 700 unique exercise intervention trials, involving more than 50,000 cancer patients in total, leave little doubt that patients benefit from physical activity, showing improvements such as reduced toxicity of anticancer treatment, decreased disease progression, and enhanced survival. The same studies showed that exercise training improves mood, decreases loss of muscle mass, and helps cancer patients return to work earlier after successful treatment. Some studies show that 150 minutes per week of moderate exercise nearly double the chance of survival compared with cancer patients who don’t exercise during treatment.’

My mum also sent me a radio programme from Australia which explored the positive results seen in trials there that implemented controlled training schedules into the treatment plans of breast cancer patients. This research actually found that those patients taking part in controlled training plans saw exponentially better results than those patients who merely followed their own personally devised training plans (like me), adding further to the argument that exercise should be prescribed as part of anti-cancer treatment.

Further to this, Russell goes on to explain that exercise is particularly important for people with colorectal cancer because it ‘speeds up your digestive system and reduces the amount of time it takes for food to travel through the intestines, reducing the exposure time to possible carcinogens (which are known to cause cancer) and thus reducing the risk of bowel cancer developing.

But despite the evidence now available, like me, Russell has found time and time again that the messages sent to patients via medical professionals are ‘mixed, often confused and often contradictory’. The evidence is so strong that there are now calls for exercise to become a standard part of ALL cancer treatment, yet this message does not yet seem to be making its way to the frontline. My treatment plan has definitely not featured exercise in any formal sense and any time I’ve tried to find out more, I’ve ended up in dead end after dead end.

And me being me – very determined, often a little obsessive – I looked really hard. Don’t get me wrong, there are fitness groups, activities and classes available to those who seek them out, but I cannot stress enough, how difficult it has been to find anything in Norwich where I live, aimed at or appropriate for younger people, or people who already followed an active lifestyle before treatment. Possibly there just aren’t enough of us to warrant the investment in my area – I rarely come across anyone else under 50, whether I am at Star Throwers, the Big C Centre or the Weybourne Unit receiving my treatment. But with 34 people in their 20s and 30s being diagnosed with cancer every day, I find it hard to believe that there aren’t a lot more of us out there.

I most definitely was unable to find any of these ‘cancer and exercise rehabilitation specialists’ I had read about. That was until I stumbled across the charity Trekstock.

I have written about Trekstock before, but to recap: they are a London based charity that aims to ‘get young adults diagnosed with cancer in their 20s and 30s moving physically, socially and psychologically. (They) are the only charity that delivers tailored support to this age group of cancer patients, to tackle social isolation and improve quality of life through and beyond their treatment.’

And they offer some really amazing things including access to tailored exercise programmes run by those Level 4 Cancer Rehab Specialists I had been searching for, but because they are based in London, I wasn’t able to access the fitness and rehab support I needed at the time I was looking for it. Ironically, since the Covid lockdown I have been referred to 1-1 online sessions with a specialist Personal Trainer, which probably wouldn’t have been made available if we weren’t all self-isolating. They did however, help me connect with other young people dealing with the effects of cancer virtually, as well as sending out some really useful information – I especially got a lot out of their free publication Food and Cancer: a no nonsense, evidence guide.

At the time, however, I was still at a loss and had to go in further search for support alone – which is when I found Beth Cullen. And I can honestly say, she turned my life around.

Beth is a physio-therapist and health and wellbeing specialist based here in Norwich who has a lot of experience working with post-natal rehab and supporting people with MS and chronic fatigue to stay active.

I initially joined her Physiofit class, which combines Pilates, yoga and physiotherapy: the first formal exercise outside of walking that I had taken part in since my surgery. Fear of infection had led me to cancel my gym membership and I was still pretty sore and very swollen at this stage too, with absolutely no trust in my own abilities. Working with Beth meant that I could adjust all the movements with her support.

Slowly but surely I grew stronger, and ultimately more confident. It helped that Beth was so understanding – she allowed me to come and go around my treatment, especially useful once chemo started. This included coming clean to the rest of the class to ensure that they let me know if they were sporting colds or viruses so I could stay away when I was in the low immunity phase of my chemo cycle. She also created a personalised rehab programme that I could do at home alongside my walking, without which I hate to think how long it would have taken me to build up the courage to download and start that Couch to 5k app, or get back on my bike again – being able to do both has greatly improved my quality of life.

Since isolation I have downloaded Beth’s Virtual Body Sculpt class and now rotate this around my cycling and jogging as well as some Body Barre workouts with ‘Coach Kel’ that I found on You Tube. I continue to attend Physiofit via zoom once a week and do Yoga with Adriene as often as I am well enough (You Tube again).

My point is, that I really struggled to find the support I needed to feel confident to get active after my surgery and through my treatment - and I am someone who is really interested: fitness is one of my things – and without Beth’s support, I don’t know how successful I would have been. Nobody would have told me how important it is to stretch and manipulate my scar and scar tissue for example - I can only wonder how people who are not quite as doggedly determined as me cope with recovery.

And now I’m on chemo, the support is even more important (and again, sparse): negotiating what is and isn’t ok alongside side effects, sickness, sore feet and limbs. neuropathy and low immunity is really difficult on your own.

But sadly, my story is all too familiar. I recently attended a webinar on Cancer and Exercise hosted by Trekstock; a virtual, post-covid replacement for their ‘Lifting the Lid’ series of discussion panels, normally held in London, tackling a variety of topics relevant to young people negotiating a life with cancer. Over and over we heard stories of how the evidence and expertise were not linked up and married to create a holistic approach to treatment and recovery – surgical teams do not know enough, so they tell you to contact a physio team who, in turn, don’t know enough about your particular surgery to offer anything with confidence, and just refer you back to your surgical team and the cycle continues. The physio I quizzed before my discharge suggested I avoided crunches and started with planks – advice I have since learnt was completely misguided. According to Russell and Beth, even those of us who were fairly active before surgery need to be careful of repeated intra-abdominal pressure post-surgery – this can increase your risk of hernia and place undue pressure on your weakened pelvic floor and abdominal wall. Exercises that do this - which includes both crunches and isometric bracing positions such as planks - should definitely be avoided, at least initially.

Another problem with the advice given, is that it is based around what we can’t do, and not what we can do.

Russel actually recommends that everyone who has had any kind of abdominal surgery should be advised to start some kind of abdominal rehab 3-4 days following surgery. ‘Gentle rehab exercises will help you to reconnect with your deep core muscles’ that have been damaged ‘and start to restore normal function’. But, as she explains, ‘very few clinicians provide specific advice, and most advice is unnecessarily cautious, restrictive and disabling’. She believes that there needs to be a ‘step-by step programme…which takes you through the first 6-12 weeks’ safely – helping you ‘regain control, connection, function and synergy in your core muscles’. This would ensure that those who are less motivated and knowledgable would be supported through rehab and those of us who are more motivated (and think we're knowledgable), would be spared the danger of turning to the internet and devising a plan ourselves that might not be appropriate in the post op period. Again, nothing like this was made available or recommended to me.

So I want to help fill this gap. There is a real need for more joined up thinking and in Norfolk especially there is a need for more support that is aimed at younger people. This will be my new mission. I have applied to become a Trekstock ambassador and really hope that I will be able to use this role to engage with other people in their 20s and 30s living in Norfolk, to ensure that my story, and the stories of other younger people diagnosed with cancer that are similar to mine, become a thing of the past. I want to campaign for more joined up thinking and increased support to get us moving with confidence.

If you would like to support any of the amazing work offered by the charities I have mentioned please get in touch and I will happily point you in the right direction. All charities are suffering due to the Covid lockdown – right at a time when their work is needed more than ever.

In fact, I am currently completing Treckstock’s 34 day Keep Calm and Keep Moving challenge to raise money for their incredible work – please sponsor me here!