Lady Shard: a tribute to my friend and former GB cycling teammate

Liz Clarke-Saul died in July this year from bone cancer. She was 31. Here’s my tribute to this extraordinary woman I’m proud to have called my friend:

In any sports team, each athlete has a nickname, and Liz’s was Lady Shard. It began on a training camp in Snowdonia, after an arduous ride up Pen-y-Pass: Liz was expertly fixing a puncture, running her fingers along the inside of the tyre when she announced, “Ah! There it is – a shard of glass!” To which Steve, our Welsh mechanic, fell about laughing repeating “Shaard of glaarse” over and over in a faux posh accent. So Lady Shard stuck; a name with which, I think, Liz was quietly pleased. 

She wasn’t really posh, but she was the absolute queen of roommates. On training camps and competitions, we settled into a routine:  neither of us would attempt conversation until at least 30 minutes after our 6am alarm calls; both of us had similar TV viewing preferences in the evening (Masterchef to drool over the desserts we were forbidden to eat and Luther/The Fall for murdery escapism). It’s just possible that I wasn’t such a dream roommate: I left various bits of kits drip-drying on the shower head and door handles, when Liz’s shoes and gloves were always paired neatly and placed under a chair. She did mildly mention my snoring once; at the next camp, she brought ear plugs. She claimed they were for the road noise outside our Holiday Inn Express. 

It was such solace to connect with someone who had the same disability. You don’t often meet other one-legged young women who’ve been through bone cancer treatment and who share your sense of gallows humour over being an amputee. We could moan to each other about sores on stumps and tip sweat out of sockets without grossing the other out. It was refreshing.

Racing is emotionally, as well as physically exhausting; you’re repeatedly pushing your body to its limits whilst fighting to prove yourself, desperate to keep your place on the team. But being around Liz on race day was calming. We’d meticulously double-check our kit, blend spinach and blueberries in a Nutribullet, force down porridge for fuel, then take turns for nervous wees in the bathroom before getting in the van with our bikes and helmets. We’d pin numbers on each other’s backs, warm up on turbos, attach bespoke cycling prosthetics to shaking limbs and wait as the seconds ticked by until our start times. That flight-or-fight adrenaline-rush wait for the start gate is the worst part of racing, and Liz wasn’t immune to the nerves, but she had a steely determination at her core which was always reassuring. 

I would break down in tears fairly often after races – through frustration or just being dog-tired; Liz was always more composed. But in South Africa, we were so exhausted and emotional after finishing a tough road race that we threw our prosthetic limbs onto the ground and collapsed in a heap, ending up in a sobbing tumble of arms and missing legs. Someone took a photo, and it’s one that I keep on my dressing table. Every morning I look at it and smile at the ridiculousness, remembering my beautiful friend.

 

But my favourite ride with Liz was in Italy, around Lake Como. We were a couple of days out from an international road race and it was a gloriously warm day so a few of us set off around the lake for a spin. I’d had a row with my coach that morning and was in a proper sulk, hanging off the back, too angry to chat. Basically ruining the ride for everyone, like you do when you’re being an immature arsehole. Liz rode alongside me for a couple of miles in silence. Then, in those dulcet tones: “Forgive me if I’m wrong, but you seem a little out of sorts.” My bad mood dissolved into giggles, and the rest of the ride was blissful, as we revelled in our good fortune at representing our country in such a stunning location. 

Our friendship far outlived my time with squad, and when I was diagnosed with breast cancer in 2017, Liz was one of the first people to jump onto a train and visit me, wheeling her bike beside her. It was the week before I started chemo, so we went for a pub lunch followed by wig-shopping, when she somehow managed to turn a grim outing into something hilarious, naming different wigs according to their personalities. I think I went for Pamela in the end – as Liz said, she looked like she’d enjoy a good night out on the tiles.

In 2018, Liz was still pursuing her Paralympic ambitions with the team, and looking forward to marrying her fiancé Jack, when she discovered that her bone cancer was back, 15 years after it had taken her leg. Liz and Jack got married right away. There was no time to waste. Their second wedding – the one they’d originally planned on the Dorset coast – was a truly wonderful day, attended by all their family and friends, wrapping our arms around them as if we could ward off the devastation. But of course we couldn’t. 

Coronavirus meant I was unable to visit in person, so our friendship over the past few months became a flurry of ever-more expletive-ridden WhatsApp messages, as I commiserated with her as her health deteriorated. There were FaceTime calls too, when I quietly noted how pale she had become, even whilst her laugh was exactly the same. 

But it was still an horrendous shock to get the call that she had died. She was 31: hard to believe that someone so vibrant should be floored in her prime. But, of course, that’s how cancer works: it doesn’t discriminate, and treatments don’t always work, especially when you have a rare version of the disease. 

And that’s where Liz leaves a legacy. She set up a fund to pay for research into her type of cancer, because as Liz put it “Funding research into adamantinoma is unlikely to save my life but it may well change someone else’s.” She smashed her first fundraising target of £20,000 before she died – enough to pay for an ideas grant. The current total stands at more than £37,000, and Jack and her family intend to keep that going.

It’s breath-takingly painful to think of the loss suffered by those closest to Liz – to Jack, her parents Lesley and Jeremy and siblings Caroline and Andrew. But when I think of her, I like to imagine her chasing away, just out of reach (I never could hold her wheel) around a beautiful calm lake with the breeze in her hair and the sun on her face. Lady Shard. What a woman.

You can donate to The Liz Clarke-Saul Fund by following this link.

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The naked truth

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When I was first asked to take part in The Naked Podcast I said no, because why on earth would I want to take my clothes off to do an interview? But then I listened to some of the episodes featuring frank and fearless females talking about body positivity and overcoming setbacks and I thought – why not?

I’ve spent most of my life feeling various amounts of shame about my body – first feeling flat-chested and unsexy next to my curvier friends, then suffering the deformity of limb loss, and the savagery of breast cancer treatment. And now it is time to stop. Because hating your own body is pointless and boring and soul-destroying. Plus, when I look back at old photos of myself aged 19, I wonder how I could have felt so frumpy and unattractive when clearly I should have been having an outrageously good time while I still had the benefit of two legs. Instead I wasted too much time moping around feeling hideously ugly (although, to be fair, I did have a shaggy perm at the time).

So, I said yes to the podcast, and then had a couple of nights of anxiety dreams in which the hosts (Jenny Eells and Kat Harbourne) and I were trying to find somewhere to record it in the middle of a mad house party, and ended up hiding underneath a billiard table. As you do. To explain, if you aren’t familiar with the podcast, the concept is two friends (Jen and Kat), one guest (in this case, me), no clothes. The interviews are recorded with hosts and guest completely in the buff, which has the dual effect of creating intimacy and lifting energy in the room. Yes, it’s wacky, but it works. The worst bit is taking off your robes at the start. But after a few minutes, you really do forget you’re naked. Honestly. We chatted for about an hour – about limb loss, competing with the GB cycling team, mastectomies and more. It was genuinely a fun, uplifting and liberating experience.

But I was incredibly nervous to listen back to the podcast when it was released this morning, because I wasn’t sure how it would come across. So I listened on headphones on the indoor bike, to distract myself from the awkwardness of confronting my own story. Listening to myself talk about personal and difficult (and exciting) experiences from the past few years was strange – I felt like it was someone else and I ended up getting a little emotional. But mostly I felt proud and happy about doing something so far out of my comfort zone.

So here’s my naked truth: my body, like everyone else’s, is perfectly imperfect. And I’m OK with that.

If you want to listen (warning – there’s some swearing and it’s a frank conversation about bodies so it’s not for everyone) you can download it via your usual podcast supplier, or here.

I’m 40. And It’s Fabulous.

When I started this blog, almost two years ago, I honestly didn’t think I’d make it to today. Because if you’re unlucky enough to get diagnosed with two different types of cancer before you’re 40, then you’re completely screwed – aren’t you? Yet here I am: with more chemotherapy, radiotherapy and surgery under my belt; wrinkles around my eyes; a few more grey hairs; and drug-induced middle-aged spread that I affectionately refer to as my ‘Tamoxifen Tummy’. But I’m here. I’m 40! And so I say – bring it on: I do not dread getting older; I dread not getting older.

The past 12 months have been about rehabilitation. Which basically means we’ve been on a lot of holidays:  to Gran Canaria for some restorative winter sunshine; to rural France for some peaceful tranquility; and to Canada for a trip-of-a-lifetime that more than lived up to its billing. We’ve been kayaking and cycling, seen orcas and humpback whales, swum in the sea and created positive memories for the children. We may now be completely skint, but every trip took us a few miles further away from the trauma that cancer treatment inflicts on the whole family.

Which isn’t to say that I now spend my days skipping about in a utopian field of daisies (I’m an amputee, we don’t skip) because daily stresses inevitably creep in: work can be tiring, the kids bicker, the bins didn’t get put out in time… the usual ‘life admin’ pressures that we all face, with an extra layer of irritations piled on top: a prosthetic limb that helpfully slides off when i sit down, and makes a fart noise when I stand back up (does anyone actually believe my claims that it isn’t me?); menopausal hot sweats caused by the drugs I take to ward off the cancer; and painful skin abrasions that make getting around difficult.

The fear of the cancer returning is ever-present. It only takes one scan, one mammogram, one fateful consultation to send me – kicking and screaming – back into Cancerland. And I see the evidence all around me: treasured friends, younger than me, who’ve relapsed suddenly and inexplicably. So for now, all I can do is try to squeeze as much joy out of life as is humanly possible. And I’ll do that whilst welcoming my wrinkles, sucking up my middle-aged spread, and rocking the hell out of my grey hairs.

 

Cancerversary

It’s almost my cancerversary – 12 months since I was diagnosed with breast cancer. A totally awesome Christmas present, I’m sure you’ll agree. Making it through the festivities was hellish because I was trying to hide my illness from friends and more importantly my children – in an effort not to spoil the vibe. I think I failed anyway: my forced smile in the photos can’t hide the pale-faced, strained knowledge of what 2017 was about to bring.

And, on the face of it, 2017 has been utterly crap:

two nausea-inducing surgeries under general anaesthetic

6 soul-destroying cycles of chemotherapy

15 rounds of fatiguing radiotherapy

17 painful injections of herceptin

seemingly-endless days of depression, tears and difficult decisions and anxiety (I’ve lost count)

BUT, hidden amongst the angst, there have been moments of joy, and laughter, and kindness. And I’ve been keeping a ‘thankful diary’ this year, to remember them. Keeping a ‘thankful diary’ is the sort of activity I would previously have dismissed as new age bollocks, and perhaps it is – a little bit.   But it also works, to reset my brain from focusing on the negatives to the positives, so here are some of the things I’ve written this year:

Binge-watching The Good Fight

Beautiful flowers & cards in the post

Introducing the kids to Fresh Prince

Roast chicken & black forest gateau

Mum sitting with me on the hospital ward

Dad doing the school run for me

Wimbledon on the telly

The gang visiting from work

A hug and ‘hope I don’t see you again’ from the radiographer at hospital

Staycation trips to Scarborough, Northumberland and Windsor

Family, friends, food and TV figure frequently in my diary – perhaps unsurprising in a year in which I have spent a great deal of time lying around in various states of fatigue and nausea. And I have spent a lot of time with my kids, much more than I did the year before when I was healthy, but working and training hard. That has been a privilege and a blessing – because when else do we, as working parents, get to spend so much time with our children once maternity leave is over? I am continuously astounded by their resilience and ability to lift my spirits, even on the darkest days. And I couldn’t end this mushy post without crediting my long-suffering husband, who has to deal with my sarcasm, pessimism and bad moods on a daily basis, and who truly knows the meaning of “in sickness and in health”.

I am in some ways fearful of what next year might bring: more surgery is planned; I am forever anxious about recurrence; and I continue to be plagued with limited mobility and side effects from the cancer drugs. But I am also thankful for the people who surround me, and the little punctuations of hope and happiness they provide.

Wishing you all a happy and healthy Christmas and new year xxx

 

 

Booby in a box

Given my current lop-sided status (pending further reconstructive surgery next year), I now have a new prosthesis: a booby in a box.

I say new prosthesis because booby-in-a-box joins the two more established members of the prosthetic community already taking up residence chez moi:

prosthetic leg (aka Peggy)

prosthetic hair (aka Beverley)

Hopefully, booby-in-a-box will, like Beverley, be temporary. But until then, please take a moment to appreciate the posh pink velvety cosmetic case in which she resides. I’m not sure why she appears so wrinkly – perhaps she is taking her cue from the septuagenarian peeking out from the pocket… (side question: why do post-surgery models always look so goddamn cheerful about lounging around in the most unsexy full-cup bras ever created? Also, where are the post-surgery bras that don’t make you feel geriatric and/or completely skint given their extortionate prices?)

Anyway, I’d better go and have a restorative ‘nanna nap’ before any more bits drop off…

Sal x

 

 

 

We need research, not awareness

I’m quite glad Pinktober – breast cancer awareness month – is over. Social media has been filled with an avalanche of pink: how to check your breasts; signs of breast cancer; warnings not to put off your mammogram etc etc. But how much more awareness do we actually need? Surely most women know you should check your breasts regularly for any changes?

I did. I checked. I found a lump. I went to the GP and got referred to the hospital. I got diagnosed with breast cancer.

But my awareness doesn’t change my chances of surviving the next five years. And my awareness didn’t help me avoid a harsh, gruelling treatment regimen.

But research might. New treatments might.

I think this concentration on awareness perpetuates the myth that all we have to do to survive breast cancer is to ‘catch it early’. But this only really applies to non-invasive cells found on mammogram routine screening. Mammograms are not offered to women under 50 years old, and anyway they aren’t as effective in detecting changes in younger women’s dense breast tissue.

Once you can feel a lump, the cancer cells have already become invasive and – even if they are small or slow-growing – there is always a chance that they have spread elsewhere in the body, to re-emerge months or years later. Even after chemotherapy and radiotherapy, which aim to ‘mop up’ rogue cells around the body, the risk remains. In my case there’s around 25-30% chance of the cancer spreading to another part of my body in the future (metastasizing).

And once the cancer is metastatic, or secondary, it is incurable. 11,400 people die in the UK from breast cancer every year.

So I, like the 55,000 other UK women diagnosed with invasive breast cancer every year,  walk around with this knowledge, and it’s really hard not to let the fear overwhelm you.

Pictures of healthy women flashing their cleavages in pink bras to ‘raise awareness’ don’t help. But a shift in focus towards putting research into secondary cancer at the forefront of the government’s and charities’ priorities might.

To mark the end of Pinktober – in recognition of those living with, and dying of, secondary breast cancer – and as a mark of hope, I’ve made a donation to Secondary1st .

Maybe you will too? xxx

 

Three reasons to be thankful

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1. The most beautiful, sunny, clear, crisp Autumn morning
2. A quiet country road on which to meander on a bike
3. Being here to celebrate my daughter’s birthday milestone

Could an e-bike get me back into my beloved sport?

I’ve been sniffy about e-bikes before now. During my time with the GB cycling team,  I scoffed at able-bodied cyclists using  battery assistance to get up hills because I was training my one-legged body to climb, even when it was really, really hard. Sometimes, if I lost momentum trying to ascend a particular bugger of a climb (Holme Moss springs to mind) I would simply keel over with the effort and, having picked myself up off the road,  find it virtually impossible to get going again without a push-start from a friend. Next time you’re riding up a big hill, stop mid-way, and try to simultaneously push off, get clipped in, and start pedalling without involving the other leg and you will experience the difficulties of a one-legged hill-start. But still, I considered e-bikes ‘cheating’.

But now, in my post-chemo and radiotherapy state (i.e. knackered), and lacking both my former fitness and hubris, the e-bike is appealing.  I am currently far too slow to ride with my former club-mates at Garforth Velo, yet I lack the confidence to ride alone. I worry that if fatigue hits (and it does tend to ‘hit’, without warning, and requires instant sofa-time), I will be unable to get home.

I wanted to find out whether riding a bike with battery assistance could help me ride further and faster and inject a much-needed bit of fun back into my life. My friend Graham at Dave Rayner Cyclesport, who supported me throughout my competitive career, offered to lend me his Corratec e-bike for the weekend and so the experiment began.

The e-bike has four modes: eco, tour, sport and turbo, which give progressively greater assistance. With pedal-assist, the battery only kicks in when you pedal, and cuts out again when you reach 15mph – above that speed you’re travelling under your own steam.  Leaving my driveway, I put the bike straight into turbo mode and whipped up the hill so quickly I felt like I was riding a motorbike. I instantly started laughing – it felt so strange!

Back in eco mode, the assistance is minor – it feels as if it’s just compensating for the weight of the bike (a massive 24 kilos compared to my 10-kilo road bike), but you also get a greater range of miles – the display on the handlebars said I had 65 miles left in the tank, compared to around 25 in turbo. Since I was nervous about using up the battery too quickly, I decided to stay in eco mode for the first half of the ride. The upright handlebars forced me to sit up and enjoy the scenery, instead of staring at my Garmin data on the stem. I still got a bit of a sweat on up the hills, but I wasn’t out of breath so I didn’t notice my reduced fitness as much as usual.

The e-bike came into its own at junctions, which have always been extra-tricky for me as a one-legged rider. I have to wait for extra-big gaps in the traffic to make sure I can get out quickly enough. If I miss clipping into the pedals on the first attempt, I have to put my foot down and try again; it can be a bit nail-biting. But with the e-bike in turbo mode, as long as I hit the pedal somewhere, the battery kicked in and got me out of trouble. It made riding the roads feel a lot safer.

But most of all, the ride was just FUN, especially on the way back when I flicked between modes to see the full potential of the bike. The road on the way back to my house is a si-mile drag uphill: it’s tiring at the end of a long ride. But this time, I flew up it with a big smile on my face instead of a weary grimace.

Arriving home after 30 miles , I still had 16 miles left in the battery in turbo mode (36 in eco) and I felt good. My leg muscles were aching (but not too much), I was slightly out of breath and I’d enjoyed being back outside with the wind in my face. Looking at my stats on Strava (old habits die hard), I saw that I had a new PB for the uphill ride home in turbo mode, but none for the rest of the ride in eco mode. It was somewhat reassuring to realise that at the peak of my fitness I was still stronger and faster than I am now even with battery assistance.

The e-bike can’t beat the satisfaction of conquering a big climb unaided, or the thrill of whizzing along country lanes with only the  swoosh of your carbon wheels in your ears, but it could be a great investment for my rehabilitation. Better start saving my pennies – this bike retails at around £2,000.

 

 

Younger Women Together

Last weekend I took part in a two-day event called Younger Women Together. It’s hosted by Breast Cancer Care for women under 45 with breast cancer. I was nervous about attending because I didn’t know anyone there, and I wasn’t sure I wanted to Talk About Cancer For Two Whole Days…. but I reasoned it was a good opportunity to meet other women in the same position. It was. But I also surprised myself with how emotional I found the experience: I laughed a lot, but I also cried. Maybe that’s a good thing.

Day one began with a medical presentation by an oncology professor about drug therapy, and led into some break-out groups discussing cheery subjects such as early menopause (hello hot flushes and low mood) and breast reconstruction. Yay. Thankfully, the day finished with laughter yoga, which is just as ‘new age’ as it sounds but effective. Any session in which I end up lying on my back on the floor laughing hysterically gets the thumbs up from me.

There was just time for quick swim in the hotel pool (which didn’t irritate my radiotherapy burns as much as I feared) before dinner. I sat with a tremendously entertaining bunch of women and had a fantastic conversation about things that did NOT involve cancer. It was awesome. With a combination of thinly-sprouting hair, headscarves and wigs we probably looked a little strange to our fellow diners, but it really didn’t matter because for the first time in ages I didn’t feel like the odd one out.

Day two was when things got a little emotional for me. And when I say emotional, I mean proper full-on tears-pouring-down-face-breakdown. I walked into the break-out group discussing body image believing I was ‘totally fine’ with my one-legged, one-boobed decrepit body (“Who cares what I look like? It really doesn’t matter…”) but once I listened to other members of my group talking with great honesty about their difficulties in accepting their new shapes, and the effect on their relationships, I was hit with an overwhelming sense of grief for my own losses. And as the tears flooded down my face, and someone offered me a tissue, I realised I was not going to stop crying and I had to leave the room.

At that point, the old me might have gone home to lick my wounds alone. But this time I stuck around, and talked it out with one of the professionals on hand. And I did stop crying, eventually. And I went back out and talked some more with the other women who totally understood why I was having a meltdown. It felt – if not good, exactly – cathartic.

So what did I learn? That there is strength to be found in sitting in a room alongside twenty other young women  – all with families, and loved-ones, and jobs and a whole lot more of life they want to live. That alone was worth the tears.

New do

Bev

Post-chemo crop

Beverley (aka The Wig) has had a hair cut. She’s gone from long and glam to an angled bob; what’s she’s lost in length, she’s gained in style.

I took her to Andrea’s Hairoom, run by Andrea Long – a hair loss specialist with an extraordinary talent for matching heads to hair. I went in feeling self-conscious in a scalp-covering headband, and came out wearing a swishy blunt-cut wig that actually feels like my own hair. Only better.

She also gave me the confidence to go and get my own multi-length, patchy, post-chemo hair cut at the hairdresser (“it will look immediately thicker”) so I now have a boyish crop which is a zillion times better than my messy bandana/toddler ponytail look of old.

I have a wedding to go to tomorrow, an occasion I’ve been looking forward to for months but didn’t know whether I’d be well enough to attend. I can’t guarantee that I’ll be able to stay awake past 9pm or sustain much of a conversation, but I do know that – with or without Bev – I’ll give it a good go.