Neuff Red Ambassador Jo Cornwell is an athlete with a difference. We find her story inspirational and though-provoking, not just for those in a similar situation, and we hope you will too...
by Jo Cornwell
The last two years have been tough. In fact the last three years have been tough. Scrub that, worst few years of my life. I feel like I’ve been trapped in Dante’s nine circles of hell.
In 2018 I could barely train as I was suffering with ill health. I failed my medical for my solo Channel swim due to extremely high blood pressure, which was abnormal for me. My doctors put it down to my age (46 at the time) but on April 23rd 2019, I found out why I had been so unwell for over 12 months, I was diagnosed with Stage 2 cervical cancer.
Facing Cancer as an Athlete
Life changing news brings out the silliest of thoughts, I was entered for Ironman Wales in September that year, far from worrying about death and all the normal 'cancery' thoughts, I set to work re-building my training plan based on predicted treatment dates, worrying that cancer was going to get in the way of training for Wales.
I was due to start treatment 3rd June 2019. Six weeks of daily radiotherapy with a weekly chemo session chucked in for good measure. After that would follow 3 Brachytherapy sessions and then I was done. (Google brachytherapy if you are interested ladies. Gents, don’t Google it!) I was due for my last treatment July 29th. So I figured, with a reduction in training each week of around 50% I could still manage to drag myself around.
Cancer, though, decided otherwise and on May 31st I was diagnosed with a second, primary, cancer. A BOGOF! Cancer has a sick sense of humour.
In January 2021 I was diagnosed with Mets to my para-aortic nodes, having had Mets to my lower vagina in September 2020 and Mets to my pelvic lymph nodes in November 2020. I have an overly ambitious tumour.
So since the day I first heard those three words “you have cancer” to today my body has been subjected to the following:
1 Chemo cocktail (taxol carbol)
11 Cisplatin chemo
57 blood draws
48 antibiotic infusions
2 Covid tests
32 paracetamol infusions
2 PICC lines (peripherally inserted central catheter). This is a long thin tube inserted into a vein in my arm which is passed through the vein into larger veins nearer to my heart. To deliver Chemo, fluids and draw blood. The tubes stick out of your arm with a device on it like a cannula attachment, a PICC line cannot get wet at any time. It also increases your heart rate and blood pressure.
31 sachets of Oralmorph
3 local anaesthetics
18 morphine injections
20 litres of fluids - magnesium and potassium
1 ultrasound DVT
4 general anaesthetics
1 major op removing half my colon
1 minor op removing part of my vagina
1 spinal block
8 CT scans
1 sub-cut needle
64 external radiotherapy sessions
6 PET scans
22 cannulas and 11 failed attempts at cannulation
1 Covid vaccination
8 days in hospital Neutropenic (white blood cells count was so low my body can’t fight even the smallest infection)
6 injections in my tummy of Filgrastim to boost my white blood cells
77 doses of steroids
165 anti nausea tablets
67 Rivaroxoban blood thinning tablets
Cancer and Triathlon
Why have I told you this? Not for a medal, or pity, or cries of “you’re such an inspiration”, but to tell you why I chose to write about exercising with a medical condition. I’m not a doctor so do please always consult your GP, but I want to talk about my experiences as a cancer patient and as an athlete training for an Ironman, among other things, whilst having experienced all of the above and still have cancer.
When you’ve been through a life changing illness or have a long term medical condition the road to recovery is fraught with frustration, but one of the biggest things I had to deal with was grief. I grieved for, and still do, the body I had before cancer (BC). My body did pretty much anything I asked of it, but not now.
I have had 2 years of “restarting” my fitness in between cancer treatments. Each time I have started with just walking. My husband used to have to take me out late at night when my joints were in so much pain I could scream, where my muscles were so sore I felt like I had been run over by a bus. I could barely walk at times as I had contracted CIPN, Chemotherapy Induced Peripheral Neuropathy, both in my hands and feet. It’s a painful condition where, all at the same time, you get heat, pins and needles, swelling and soreness.
Sometimes it was so painful I couldn’t even cover it with a sheet when I slept, but off on our burglar walks we would go every night, hobbling around our streets gone midnight with me in pyjamas and slippers. Each step made me cry. In the house I would crawl around on my hands and knees (lucky for me we live in a bungalow so no stairs to negotiate), but I would force myself out the door daily to get moving again, to try and prove to my cancer that it wouldn’t beat me. Every time I stepped outside I made sure that, no matter how hard it felt, I walked a little further every time.
Training during Cancer Treatment
I started the Couch to 5 k programme just 3 weeks after my first operation. My surgeon had removed a stage 2 tumour, 29 lymph nodes and half my colon, so doing C25k eased me back in. I had to “run” holding my glued together tummy, I was cracking out 17 minute miles, and whilst I can laugh at that now, at the time it messed with my head a lot. I was back to grieving my life BC. Never a fast runner, but I was comfortable running 10-minute miles and I felt that even that was slow then. Running this slow however was excruciating.
I was only 4 weeks in when I started my main treatment. Daily radiotherapy for 6 weeks with a chemotherapy session weekly. This was exhausting and honestly, some days, I was so tired I could barely walk from the car to the radiotherapy department and back again. The only good day I had each week was my weekly chemo session. I was pumped full of a litre of potassium and magnesium before and after my chemo infusion so I felt great, as well as being given steroids. For one day a week I felt better than normal, but still had no inclination to exercise. It was so exhausting.
After these 6 weeks I then had 3 internal brachytherapy sessions ahead. The first attempt failed and the catheter they put in under general anaesthetic introduced an infection and I was very ill for a week. When I arrived at the hospital a week later I was so ill I was admitted as an emergency case into the chemo ward and put on anti biotics. I was neutropenic. My white blood cells had given up the ghost and my neutrophil count was so low I was unable to fight infections. I wouldn’t come out for 8 days. During this time I had daily injections in my tummy to try to increase my white blood cell count high enough to allow me to have brachytherapy. I finally reached the minimum count on Thursday morning and underwent a spinal anaesthetic and the insertion was a success and over the next 48 hours I received my treatments, knocked out by morphine during this time.
I now had 3 months until my post treatment scan. I was unable to ride my bike or swim for 10 weeks so that gave me time to get back to running. Back to C25k. This was exhausting. My white blood cell count was still low so I had to rest a lot and even the short amounts of time running wore me out and I used to sleep as soon as I got in. I was generally sleeping around 14hours a day.
At my next scan, Jan 2020, I had a cough (I had had a cough since December, I clearly had COVID before it was known), so the radiologist scanned higher than the pelvic region that was planned. Lucky for me, as the cancer had spread to my para-aortic lymph nodes which, had they stuck to the scheduled scan area, they wouldn’t have seen it. I thank my lucky stars for that cough.
Another PICC line was put in my arm in February and I re-started treatment. A further 6 weeks of daily radiotherapy and weekly chemo. I was determined to keep exercising this time so, whilst I couldn’t swim because of my PICC line, I could get on my turbo. This lasted 2 weeks. I was cycling at 5mph. I was depleted of energy and my blood work was looking “iffy”, so training was abandoned through treatment.
Restarting Training After Cancer Treatment
Once I was done I could re-start training again. This time though I could swim as soon as my PICC line was removed, so as soon as l could I headed to a local lake and got back into the water again. I didn’t find re-starting swimming as hard as I expected. I had been out of the water for nearly a year, but on my first swim I managed a mile with no problems.
Zwifting was tough. I had received a lot of treatment to my “lower bits and bobs”, so combined with treatment fatigue I wasn’t used to being in the saddle and found I could only manage 30 minutes at a time and had to break out my thick padded Assos shorts. Pedaling around Watopia at 6mph and an average of 30 watts, I was frustrated and used to finish most turbo sessions in tears.
Back to C25k AGAIN! I was exhausted and frustrated every day, but worse I would spend hours pouring over Garmin stats from BC, beating myself up over how fast I could run before, how much better my cycling was before. I would only ever be pleased at how well my swimming was progressing, but as that’s my favourite and strongest discipline, it was inevitable I would have more muscle memory there.
Dealing with set-backs
I reached the point where I was running up to 30 minutes non-stop at around 15-minutes miles when I was due for my next scan. There wasn’t to be any let up on this rocky road: the scan revealed it had taken up residence in the lower part of my vagina (I told you it was ambitious). An operation was scheduled for early September and for two weeks before I was forced into isolation because of COVID procedures.
Mentally this was a big blow. Not only was I having another operation, but on top of that I would have to come home with my catheter in for two weeks. So even going out for walks would be troublesome.
I was in hospital for just 5 days when I was discharged. Waddling back to the car I was in tears as even that was difficult with a catheter in. The next morning the damn thing just fell out, back to hospital and a new one was put in. The balloon had deflated on my other one. It was faulty. Come the following day I was in a lot of pain. By the time we had eaten Sunday roast I was in agony, I couldn’t stand nor could I sit down. My mum called 999 and we were on our way back to hospital. I was kept in overnight and put back onto IV antibiotics. Another urine infection from the catheter.
I was discharged the next day with antibiotics and told to take paracetamol. For the next 7 days I stayed in bed and only got up to shower. I had blood in my urine most of the week and was staring at the same 4 walls. Finally, my catheter was removed and I was given the all clear to start walking again.
So many set backs and now I was back to hobbling around the block again, going a little further every day, walking up a little hill half way and shuffling further up it each time.
A month after discharge I was told I was healing well and could start running again, but no swimming or cycling until December. Another blow. I was desperate to get back to the lake and join my friends at the winter Chilly Dippers group. But instead I was back to C25k again, as I could barely run due to the discomfort I was experiencing from where I had my operation.
A month into couch to 5k and it was time for my follow up scan. Praying for this scan to show NED (no evidence of disease) but it wasn’t to be. My lymph nodes were showing signs of cancer, this was my 5th diagnosis in 19 months.
Triathlon Training with a Tumour
I’m a bit of a pro now when it comes to receiving a diagnosis of cancer but it still hurts. It still takes me to dark places, but only for a few days. This one was different though. The scan was 5th November so I was facing treatment over Christmas and that was a real blow to me. My oncologist decided to play a game known as “go or grow”. As games go it’s not the most fun one to do, and we re-scheduled a scan for 8 weeks later, early Jan 2021.
This was great news as it meant I had another 8 weeks of getting fit. But most importantly I could get back to the lake. Water temperatures were dropping but it was good to be back in the water and in fact I did my coldest swim in December 2.5c for 15 minutes.
Cold water swimming is my therapy. Whilst I prefer sea swimming, I love going to the lake as it’s safe there and I can just relax. But of course it wasn’t to be for long as we faced another lockdown in December.
Anxiety and Mental Health
Now there’s a word known well in the Cancer world. It’s called 'scanxiety'; it describes the fear and worry associated with scanning, both before and after a scan, and before the results are given. It’s all consuming. But this time things were very different and it was mentally taking its toll on me knowing, since November 5th that I had cancer inside me and we were just waiting to see if it grew, or if it went away.
Scan results take a couple of weeks, so it was late January when I found out that it hadn’t gone. But neither had it grown. By now I was actually running and was steaming along at 14 minute miles. My watts on Zwift were up to a heady 50 watts average and I was pedalling at 8mph now!
I was stressed beyond anything you can imagine, having known since November I had another tumour inside of me. Finally, late February after my case had been taken to many meetings I met with my oncologist. The tumour was too small to biopsy. In a vascular area, it would involve a major operation for such a small tumour and due to its complexity would have to be performed at the Royal Free Hospital in London. So the preferred treatment is radiotherapy, but it’s in an area that has received residual radiation twice from being treated in the pelvic region originally and from the para-aortic region last year so I can only receive a small amount of radiotherapy there as the body can only have so much.
Ideally the body should have a 12 month break or even better 18 months before radiation is delivered to an area already treated. So that’s the plan. We are re-scanning in April and if it doesn’t grow, we re-scan in July. If I can get through these two scans without it increasing then we will reach 18 months in October so we will go ahead with treatment then.
My oncologist knows I want to race Ironman Wales and I have a London marathon ballot place so he is doing his best to only treat when we need to. In the mean time I have to keep training.
But, finally, I reach the point of what I set out to write.
Adapting Training Plans to your Health and Capacity
A training plan means actually knuckling down. I’m realistic that I’m just looking to finish IM Wales whereas when I entered I wanted a sub 13 hour. But I know I will be chasing cut off times, especially on the bike. So how do I manage a 30-week training plan with almost zero base fitness and a wrecked body?
I now have to 'train smart', and listen to my body. We are all guilty of training through injuries hoping that if we ignore it, it will go away. Guilty of going out for that run when we are exhausted or sick, just so we can tick that training session off the plan as completed. So, for me, it now requires a complete change of thinking around my training.
Rest and Recovery
Cancer related fatigue is indescribable. The more treatment you have, the longer it drags on. I imagine that this is what it feels like to have ME (myalgic encephalomyelitis). It’s not just tiredness, it’s described by doctors as “a distressing, persistent, subjective sense of tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning, and is not relieved by rest". This can go on for months, or even years after cancer treatment has ended. To put it in layman’s terms, I feel, everyday, like I have been run over by a bus. I sleep around 10 hours most night and still wake up tired.
So I’m learning to be kind to myself. I know I’m suffering from CRF as every day I honestly don’t want to do anything. I could just happily stay in my jimjams and watch Netflix all day BUT my hunger to get to the start line of IMW forces me to do something 99% of the time.
Listen to your body
Some days I can run 11 miles, other days just 30 minutes running leaves my joints and muscles in pain for a few days. So every day I have to assess what I can do. I ask myself what is my body capable of today. Am I capable of training? That’s a different question from do I want to train, to which I would answer no, whilst dunking a cookie in a cup of tea, and most days I am capable of doing something.
Adapt your plan
I then look at what I am supposed to do, can I train twice today or can I only find the mojo to train once? If so, which one will I do? Inevitably I will choose not to run as this causes most fatigue and pain to me, so if one training session is getting dumped, it’s running. I will then look at the mileage I have, or the session ahead, is it manageable? If I have 1 hour to run and I’m not up to it, I shorten it to say 30 minutes with the caveat that if I’m feeling good I will do 45 minutes. That way I have given myself permission to stop after 30 minutes without feeling guilty or hating myself for not completing a full work out. On the flip side, I might have a 90 minute bike ride and be feeling great so I will take the opportunity to put another 15 minutes in the bank.
There are also rare occasions, where I just can’t summon the will to do it. I can’t explain it, but I just can’t find the energy to do anything other than a few jobs around the house. These are the days that mess with me. I always take 1 day as complete rest every week, so it breaks me when I have to take a second day in a week to do nothing. Days like today, I had a scan so had Lorazepam, a barium drink and contrast injection. I dozed a lot of the afternoon and had 10 hours sleep last night but I’m toast. I have a brick session due today but I can’t even find the energy to get into my cycling clothes let alone climb onto the turbo trainer. And what makes it harder, is that I am stuck on the trainer and have been all through my cancer shambles. Concerned that any accident might cause delays to my cancer treatment, I’ve been barred by my team from “real” cycling.
Be Kind to Yourself
And that’s it, this is where the mental battle starts. I’m doing nothing. What if I miss a cut-off at Ironman, was it this missed brick session that could be the cause of it? Guilt kicks in but I can do nothing about it, I’m just too tired. So I’m learning to change that thought process to something like this.....
My body is amazing, it’s winning it’s fight against a killer disease. It swims, bikes and runs having gone through so much for me, it’s been poisoned by toxic substances (chemo is just a fancy word for poison), radiated so much I’m surprised I don’t glow in the dark, been dosed up with other medications and has an immune system that’s running on empty, for not just these two years of having cancer, but for three or four years before I was diagnosed, as the cancer was taking over my body, quietly and stealthily.
My body is doing its best, but just needs a little more rest than most. My body has an unwanted tenant that refuses to be evicted and I have to let my body do what it does naturally. To let it fight on days it feels like fighting but rest when it’s a bit overwhelmed.
I bath more often than I used to, always in magnesium salts, yeah I know there’s no proof it works but, even if it’s just a placebo effect it works for me. I’ve bought some cheap recovery boots to put on when my muscles hurt. I’m sure the £1000 versions work a lot better than mine, but they ease the tension in my calves and thighs. I use them virtually everyday. All to try and help my battle-hardened body feel a tiny bit better.
Smart Training | Not just for Cancer Patients
I urge everyone to take a leaf out of my book. Training plans are great but they don’t need to be followed to the letter to the detriment of your body. Listen to your body. What’s it trying to tell you? Maybe, when you are out on a 2 hour run you are feeling sluggish just 30 minutes in, it’s your body trying to tell you something. Slow down, or even turn round and go home. Get in the bath and let yourself rest. Unless you do this for a living, it won’t hurt to take a couple of extra rest days a month, in fact it’s probably much better than pushing on and risking injury or illness.
As athletes, pro’s and weekend warriors alike, we expect so much from our bodies. Listen to it, it’s the only one you get. Training through illness and injury and posting it on Instagram is fun at the time but is storing up a whole lot of trouble for the future.
In the meantime, enjoy your training but please enjoy life too. At the end of the day, when you are taking you last breaths, will you be worrying about why you didn’t improve your VO2 max to the superior category on your Garmin?
Life is short, trust me.