Contributed by Julia Mackay, AURA member (WA)
12 May 2015. Sitting in the doctor’s office, kindly nurse sitting to one side, my daughter Soraya sitting next to me. The nurse was holding a big pink book with a handle.
‘Hmm, not great’, I thought, but then I knew what was coming.
Out of about 50 or so women who had arrived throughout the morning to the Charles Gairdner Hospital Breast Cancer Clinic, there were three of us left. I assumed the lucky ones got to leave while us ‘special’ ones stayed. I had had a mammogram, then an ultrasound, and finally a biopsy. While waiting, I’d knitted several squares of wool provided for us in baskets in the waiting room that someone then turns into a blanket for needy folk. Soraya arrived in the afternoon after finishing her placement at Charlies which was lovely as I didn’t want to be told what I knew I was going to be told without someone I loved nearby.
Caring doctor leaned forward and recounted today’s events.
‘Yeah, yeah, I know what’s happened today, just get on with it’, I mumbled silently.
‘So,’ caring doctor started and I saw kindly nurse lean forward. ‘The biopsy has, unfortunately, come back as cancer’. I looked at Soraya and her face froze. Caring doctor continued, ‘it’s a grade one tumour, which is good news’.
Good news, bad news, it’s all shit news really.
‘Right, I have a run booked in June’. I’ll never forget my words or the look on caring doctor’s face.
‘Julia, I have just told you that you have breast cancer’. Caring doctor sat forward further and kindly nurse reached out her hand for mine.
‘Yes, yes, I know, I knew you were going to tell me that, but I have a run booked in June. Do you think I can still do my run? It’s Eagle and Child with the Perth Trail Series and it’s one of my favourite runs’.
I’m sure caring doctor and kindly nurse thought I was mad, in denial, hard of hearing or something else because both sat there in silence for what felt like ages. I broke the ice.
‘I have booked Eagle and Child, and I don’t want to miss it so do you think I can still run?’
Caring doctor sat back in her chair. ‘You will need to see a breast cancer surgeon and see what they recommend’.
There wasn’t much more to be said. Caring doctor gave me a list of surgeons, kindly nurse handed me the big pink book that said ‘Early Stage Breast Cancer’- guess that was a good sign. Would hate to be handed a book that said, ‘Oh Shit, It’s Almost Too Late Stage Breast Cancer’. Soraya gave me a hug and we headed out to the car park. As I left the waiting room, one of the other two women was called into the caring doctor’s office. My heart went out to her.
Driving home I felt really angry that I got breast cancer. I didn’t have any of the indicators—–I’d breast fed both of my children, there was no history of breast cancer in my family, I didn’t drink or smoke or take any other noxious substances apart from coffee. Just lucky I guess.
03 June 2015. Surgery. Awful day. Lots of pain – having a ‘hook wire’ inserted into my left breast under local anaesthetic then the radioactive dye injected straight into my nipple without any local anaesthetic. Freakin’ hell. Geiger counter guy said it was working and the dye would flow into my lymph nodes to see if the cancer had spread. I’ve never been scared of surgery before this but I remember feeling terrified as they wheeled me into theatre.
The calm face of Dr Wen Chan Yeow was soothing. I was suddenly back in recovery then in my room where two wonderful friends, hubby Greg and my sister waiting for me. A short time later, Dr Yeow delivered the best news that there was no cancer detected in my sentinel lymph node and she got the tumour out.
04 June. Did some squats in my hospital room and walked as many laps of the ward as I could. Nothing wrong with my legs after all.
07 and 08 June. Went for a walk with hub.
09 June. On the treadmill at home when my left arm started to swell and go all tingly. Rang the hotline for the hospital and my wonderful breast cancer nurse. Reassured that it’s ‘normal’ and part of recovery after having my sentinel lymph node removed.
10 June. Back at work and back in the gym. My incredible trainer, Clinton, had researched breast cancer surgery and prepared stretching exercises, arm movement exercises etc to keep everything moving and try to avoid lymphedema.
Sunday 21 June. Eagle and Child run! To be correct though, I had changed to Eaglet and Bub as I thought a ‘shorter’ distance was probably best. Magic day! I had decided to wear my own ‘sleeves’ to keep warm as the year before had been freezing and, instead of buying a proper pair, I cut the legs off a pair of woollies tights and used them. They turned out to be a god send as I hadn’t realised that, in the process of having my sentinel lymph node removed, a lot of cutting and digging around deep in my left armpit had damaged nerves that caused the most awful ‘zinging’ sensation up the entire back of my left arm. Accidentally touching the metal seatbelt in a car or leaning against anything metal in the gym was like an electric shock.
I felt like ‘old Julia’ running Eaglet and Bub. Before breast cancer (or what I came to call BBC) Julia – just running, free on the trail, having a brilliant time and doing what I loved so much. I will never forget two standout moments from that day. Crossing the finish line and literally falling into the arms of ‘Wonder Woman’ Karen Hagen who held me while I sobbed. I wasn’t sure, sitting in caring doctor’s office on 12 May that I would actually be able to run E&B and return to some semblance of a normal life after cancer (AC) and it was pure joy to realise I could.
The second magic memory was at the presentations afterwards when race director Melina Mellino said some beautiful things about me and handed me the most gorgeous bunch of flowers. I remember telling her beforehand about my diagnosis, I still planned to run and that I ‘wasn’t going to let a pesky little tumour stop me from doing what I love’.
That day was a huge turning point for me.
I ran every event after Eaglet and Bub as if cancer had never happened, however the zinging arm got worse and then the side effects of radiation happened. Because my tumour was Grade 1, I didn’t need chemotherapy or a mastectomy, for which I was very grateful, but I had to have 30 zaps – every day for six weeks apart from one day off when the radiation technicians recalibrated the machine.
I got my three special little tattoo dots (one in the middle of my sternum and one either side of my chest so that the zaps went into the same place each time). After the first two weeks (10 zaps), my skin started to burn. The area that was zapped for 26/30 zaps was almost the complete left side of my chest and under my arm which was a significant area. The last four zaps were targeted directly to the tumour sight – a bit like the alien machine from Independence Day when it opens up on the people on the roof and blasts them all to smithereens.
I was warned about the ‘sunburn’ effect but, hey, I was a child of the 60s and 70s and a proper summer holiday was not had unless I burnt so badly that my best friend peeled the skin off my back. This was different though. The burn went all the way under my left armpit and down my left side so when I held my arm down, the pain was excruciating and the chafing was horrific. Couldn’t run without moving my arm and after the first few runs, the chafing got worse because with every subsequent zap, the burn got worse. The special cream the staff gave me only soothed the area but this didn’t help with running because the cream soon rubbed off.
They say that necessity is the mother of all inventions so I decided to make my own pad to hold under my arm. Staff at Charlies gave me a piece of netting that holds wound dressings on and I cut a hole in it for my arm, whacked the biggest, industrial strength maternity sanitary pad I could find in the netting and secured the netting over my shoulder with tape. Voila! The netting and tape kept the pad in place and stopped my arm from touching the burnt skin. It meant a new pad for every run but it was so worth it. I had to do this for a good six months after the zaps finished as my seriously burnt skin needed to heal.
It took well over a year for the zinging in the back of my arm to stop to the point where I didn’t need to wear my ‘woolies sleeve’ which was a huge win. The burn areas had healed and the only sign I had had BC was a smaller left boob and my three tattoos. Oh and the horrible medication I started at the end of September 2015 that caused dreadful side effects that necessitated taking two other drugs just to manage the new hell I’d discovered.
However, as Breast Cancer is the gift that keeps on giving, I realised that, after about a year of starting the drugs (September 2016), my body was aching in areas that hadn’t ached before. I put it down to ‘stuff with BC’ and got on with work, family life and my precious running. I was starting to do some longer runs, I’d found Ultra Series WA and was doing some of their events as well as my regular PTS runs, two marathons with the City to Surf and the gym.
Coming back to Perth in January 2017 after trekking to Everest Base Camp with my children Soraya and Quinn, I put my usual Salomon runners on for the PTS Snake and Ladders event and realised that they felt tight. I persevered for the next two events thinking that maybe wearing my trekking boots had done something to my feet, but it hurt and was very uncomfortable running in my Salomons. I hadn’t been able to fit my feet into any of my work shoes either and I was having to buy bigger shoes. It was only after mentioning this to my beautiful friend Kay who I had met in the radiation ward, that she told me that the medication we were both on causes irreversible changes to one’s ligaments and that, along with my increased running and running longer distances, was probably what had caused such significant changes in my feet and what was potentially causing my other aches and pains.
So, I took myself off to a running store and bought my first pair of Altras with their big toe box and I had no more foot pain. Gave away my four pairs of Salomons along with all my other shoes that no longer fit.
I had also learnt at this time that I had osteopenia as the cancer drug essentially leaches every bit of oestrogen from my body and my bones. As I said, the gift that keeps on giving.
Over the years I had toyed with the idea of running an ultra marathon after realising that I enjoyed longer distances (Half Truth with the PTS in April 2014 was my longest at 24kms on a trail) and running my first Loose Goose event, about 23kms. I had driven with Kathryn Hookham who did the 53kms event and I saw all the other ultra runners completing their events, I heard of the legendary Emma Luscombe who was doing Duck’s Nuts and I was in awe. Wow! I wanted to be like Kathryn and Emma and the other runners doing ultras but I never thought I was an ultra marathon runner.
2018 crept in and the nagging thought of ‘trying’ an ultra just kept hanging around. I’d done a few more USWA events (always choosing the shorter distance) because I just never thought I belonged anywhere near the ultra runners with whom I couldn’t identify because I never thought I would ‘belong’ to that special club. But, I started to think about my BC experience – I never thought I would ever get breast cancer, but I did and I survived it. I never thought I would run again after my diagnosis but I did. So, why didn’t I try an ultra? The worst thing that could happen was that I wouldn’t finish. That would be hard but what’s worse than a cancer diagnosis?
So I signed up for Loose Goose 53kms. I packed my drop bags with photos of my Everest Base camp trek to remind myself to keep going along with chocolates, snacks, and a clean shirt. I stacked it at about 40kms (I seem to do a lot of stacking), but lay on my back and did a ‘temperature check’- nothing broken, nothing hurt, so told myself to get up and keep going. I hadn’t realised that I had been enjoying myself. I think I was so focused on the ‘process’ of running and whether I was going to finish that I forgot to enjoy myself! It started to get dark and it felt a little lonely but another runner passed me (doing a longer distance of course) and gave me some encouragement so I kept going. It was pitch black when I saw the orange cones and the finish line in the distance. An indescribable feeling of elation as I crossed that finish line and got the best hug from race director Shaun Kaesler followed very closely by a very special hug from mate Felix. My first ultra and I finished it.
Goose was going to be my first and only ultra but I got a bit addicted after that day. It took me quite a few ultras though to realise that I did belong in this community of ultra marathon runners and it took a few more for me to realise that I am an ultramarathon runner…whatever that looks like. I don’t use labels anymore though as they minimise my whole self. I don’t consider myself to be a breast cancer survivor. I’m just someone who got it, fought it and that’s it. I run ultra marathons, I run trails, I am a tortle runner (a cross between a tortoise and a turtle), I’m slow, I’m often at the back with the sweeps. Oh, and I love dressing up – if I can run in a costume I am a very happy runner.
So, where has my BC experience left me?
More resilient, more creative and inventive, more prepared to give something a go, more understanding of my body and what it can cope with, more understanding that things just happen. I have now run 23 ultras (including 3 DNFs). Unfortunately I have a broken wrist after stacking it at Feral Pig but shuffled Stay Puft this morning – because that’s what I do. I keep going. I run my own race.
Pictured: Julia Mackay at PTS and USWA events throughout the years. Photographs – Supplied.
The Wounded Boob
She said the words ‘you have breast cancer Julia’ – I was utterly shocked.
Cancer – me? No way! My mind shut down – completely blocked.
‘I can’t do this,’ I thought, and fear was all I felt.
‘There must be a mistake,’ I cried, and my soul began to melt.
How do I navigate this strange, awful new world?
I can’t face it at all; safe under my doona I shall curl.
That’s not the way, a small but strong voice said.
I want to live – get thee out of bed!
So I started the ‘journey’ – a path not wanted, but chosen for me;
Not sure how I get to the end, when the end I cannot see.
But carried I was, every step of the way,
By my beautiful, kind and wondrous family and friends I held in my heart every day.
Helped by your caring, heartening words and reassuring hugs,
your smiles, laughter, good wishes and love.
Carried also I’d say
by the most brilliant Charlie’s Cancer Centre staff I saw every day.
It was your professional manner, kind words and reassuring touch,
your smiles, good conversation, advice, and Sorbolene cream – much!
And certainly carried by my trainer extraordinaire
Who adjusted my workouts – just to be fair.
He did extra research on things I could do,
Not easy with a grotty knee, gammy back, weird zingy arm and painful boob.
But find things he did:
Squats, weights, bike, treadmill, modified push-ups, sit-ups, and dips.
You sent messages of support and helped to count down the zaps and days,
Until it was all over and a proper flogging was back on the schedule for Fridays.
Needing also to connect with my magic Perth Trail Series tribe
Terrible symptoms, trying to take it all in and adjust my stride
Black woollies arm sleeve, thick pad, scared, not sure if I can finish a run
Give it a go Julia, whatever you can manage, it will be fun
I don’t have to finish, it’s starting that counts
BC is, after all, like a new trail, its own huge hill and obstacles to mount
Getting back out there on the trails I love, helped me to heal and my soul said thankyou
My tribe is with me every step of the way, they love me I learnt, and I love them too.
From all of you I needed your expertise, skill, patience and supportive words
And your encouragement, ‘wooo hooos’, and good wishes were always heard.
Saying ‘thank you’ doesn’t seem quite enough to do
But a truly heartfelt thank you is what I want to say to all of you.
It was everything you all did that got me through this ‘interesting’ time
And helped to heal this wounded boob and spirit of mine.
Thank you so much