A sense of responsibility

November 2016

My genetic make up gave me an increased chance and ultimate diagnosis of breast cancer.

It has also given me a sense of responsibility.

That sense of responsibility led to an application to become a part of the Australia New Zealand Breast Cancer Trials Group (ANZBCTG) IMPACT Advocate Program and an opportunity to spend an incredible week on the Gold Coast hearing from world-leading breast cancer researches, scientists and clinicians.

Along with four amazing fellow survivors from around Australia and New Zealand, I attended the Clinical Oncology Society of Australia (COSA) 43rd Annual Scientific Meeting that was held in conjunction with the ANZBCTG’s 38th Annual Scientific Meeting for the first time since 2010.

 

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With fellow 2016 ANZBCTG IMPACT Advocate members Isabelle, Josie, Greer and Thelma.

 

The aim of IMPACT is to recognise the important contributions made by women to breast cancer clinical trials research and to offer those who are part of the program the opportunity to learn more about past, present and future research so we can advocate for increased participation in breast cancer clinical trials in the broader community.

The chemotherapy regime I was prescribed was part of a clinical trial. When my oncologist first mentioned it to me all I could hear was “Would you like to be a guinea pig?”

I soon learnt that thoughts could not have been further from the truth and post-conference I am more intrigued than ever about clinical trials and the impact they can have on screening, diagnosis, treatment and survivorship in the not-so-distant future.

That’s the kind of knowledge I see as power and my ‘responsibility’ as a survivor to pass on.

Privileged is an understatement to explain how I felt being selected to be a part of this join conference that offered presenters from around the world.

Those presenters included Australia’s own Dr Shom Goel who trained at the University of Adelaide but now works in the US as a physician-scientist at the Dana-Farber Cancer Institute and Harvard Medical School in Boston as well as Dr Laura Esserman, one of the most engaging and passionate speakers I have ever heard (on any topic). Dr Esserman is recognised as one of America’s leading experts in breast cancer research and treatment and was recently named in the TIME 100 most influential people in America.

 

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Dr Laura Esserman

 

They are just two of the names I had never heard of before heading to the conference — and they are now two names I will never forget.

Their impact was felt not only because of the way in which they spoke about cancer research to the clinicians in the room, but the way in which their presentations always had an underlying tone of putting patients at the forefront of any research or treatment.

The pair continued to re-iterate throughout their numerous conference presentations that the thinking in cancer care needs a momentum shift with a cautious “less can be more” approach. Individualised care and sparing patients invasive treatments that they don’t need are areas this amazing pair focussed on when it came to advanced cancer research.

One of the sentences I heard during my treatment that will forever stick with me came from my radiation oncologist. Upon review of my ongoing care (following chemotherapy and mastectomy) the Dr recommended radiotherapy. Upon recommending six weeks daily radiotherapy she said to me, “I really hope that in 10 years time it’s proven that you didn’t need radiotherapy, but at this point in time it should be a part of your treatment if it is going to be as comprehensive as possible.”

I hope she is proven wrong too so less and less patients have to endure the daily rays of radiotherapy and it’s exhausting and physically-scarring side effects. After spending hours upon hours in lecture theatres at the COSA-ANZBCTG Joint Annual Scientific Meeting listening to professors, researchers, physicians, scientists, psychologists, dieticians and surgeons — I am filled with so much hope that their dedication to the cause will start to lead to less “over treatment” in breast cancer patients.

Professor Bruce Mann, a surgical oncologist at the Royal Melbourne and Royal Women’s Hospital left us survivors with even more faith in the work being done in the breast cancer setting. He said, “It is east to get focussed on the research and forget about the patients. But often it’s those patients, whether it be in the clinic or as part of a consumer group, who remind you why you do the research.”

 

 

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Finding the right words a year on

It’s got to the point where I dislike the word ‘milestone’ almost as much as the word ‘journey’.

In my working life as a sports journalist milestones are mostly used to mark a significant achievement for a player – usually game tally milestones. The greater the number, 100, 150, 200 or more, the more lauded the milestone.

In my personal life, in particular when it comes to analysing my health, milestones seem to be used to reflect the next stage of your cancer ‘journey’ having come to an end or when you had to suffer through another part of this energy-sapping and emotionally-draining disease.

Two weeks ago a major ‘milestone’ was noted (not really celebrated cos that just didn’t feel right) when May 6, 2016 marked a year since my final chemo treatment. The fact that my chemo schedule took seven months from start to finish is almost forgotten as the focus goes on the end and not the bits in between!

 

The hair journey tells the story of the first milestone

 

Although it is a date that will always been tinged with sadness as it was the same day my husband’s mum, my much-loved mother-in-law passed away.

As I prepare for another round of surgery this week, another milestone is creeping up.

It’s nearly a year since my first operation. Nearly a year since I was first truly challenged to deal with the true physical assault this disease would have on me by removing my right breast.

Unless you have undergone a forced physical change of this magnitude it’s impossible to understand just what impact it has on your life – in every way!

Looking at yourself in the mirror and accepting the image being reflected is nothing short of heartache. And it’s there everyday. But it’s better than the alternative and not being given a chance to rid my body of this disease and continue to watch my children grow and learn and become gorgeous little humans.

Speaking of my babies, they both amaze me and surprise me often with the way they have dealt with what has been thrust into their reality at such young ages. The little man has just been recognised publicly by Breast Cancer Care WA in their latest Spirit Newsletter for his fundraising efforts. We were at a final last year between Fremantle and Hawthorn and he went out scrounging discarded AFL Records after the game as I enjoyed a glass of bubbles in the Media Room. He came back with about 10 and just as I was wondering what on earth we were going to do with them he said “I’m going to sell them to raise money for breast cancer.”

My beautiful boy with his fundraising rewards

 

Needless to say I burst into tears and there weren’t many dry eyes in the room when I explained my water works.

They are very special my babies and while they are being exposed to the raw reality of having watching a parent go through this ‘journey’ they are learning amazing empathy and what it means to be a good, genuine person in this world!

 

Crazy Mother’s Day selfies

 

So as the milestones continue to come and go – we will mark them appropriately and reflect on what they mean – how far we have come and how hard we have fought.

I’ve continued to be blessed and surrounded by amazing people and a few of us got together to celebrate life and raise much-needed money for the McGrath Foundation at the Curtin Uni Wesley Football Club’s Pink Tiger Day. It was seriously one of the best days I’ve had in a long time!

 

Sharing an amazing day with some amazing women!

 

Surgery this week is to remove the air expanders that have turned my chest into a ridiculously uncomfortable, rock-hard wall, and insert permanent implants that will look a lot more like boobs and less like big, over-inflated air balloons stuck on the front of my body.

I’ll also have an oophorectomy (one of the new, favourite words I have picked up along the way) – which is the removal of my ovaries and tubes. That’s elective/preventative surgery we decided to go ahead with given my BRCA 2 genetic position.

Bring it on I say – it’ll drag me closer to my next ‘milestone’ and finally I’ll be able to buy some bras that actually fit (and not daggy old surgical bras either)!

I forget

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Sometimes I forget I have cancer. Actually a lot of times!

Maybe it’s because I’ve had a fair gap now in between one stage of my treatment and the next.

This week marks 7 weeks since my mastectomy. Everything went as well as possible with the surgery and the surgeon was pretty happy with the results.

Now we do the “clean-up” — radiation.

In the past 7 weeks I’ve only had five appointments (including two physio visits which I don’t really count) and one lot of blood tests — maybe that’s why my brain has gone into forgetful mode. Because I have been left alone for so long to simply recover and get my body prepared to be scanned, poked and prodded my mind has been taken off what lies ahead of me — well in the short term anyway.

I’m headed back to hospital this week for my radiation planning. This is the second attempt. At the first attempt 4 weeks ago I couldn’t raise my arm above my head. So the Dr sent me away to get some physio and work on getting my arm mobile enough so the scans could be done properly and in anticipation of the radiotherapy that will start about 2 weeks after these scans.

I’ll get my first tattoos as they mark the three spots they will target with the radiotherapy. Then I’ll get a schedule that will set me up to visit once a day for 5 weeks to make sure any cancer cells are well and truly gone.

I caught up with the girls on my husband’s side of the family last week and one of them said to me “I forgot you even had cancer” – probably one of the nicest compliments I’ve had in a while. We talked about why and I guess it’s because life has gone on. There are still things to do, people to see and kids to entertain and educate.

There really is not a lot of time to stop — and I think I like it that way.

I have pushed myself to go to events and catch up with friends, though I do pay a price and I get pretty tired.

IMG_0328 Trainwreck premiere with Denise

IMG_0162 Ant-Man premiere with my gorgeous Jack

But I wouldn’t have it any other way and it keeps me feeling “normal”.

I don’t want to be their friend, wife or mum with cancer — I just want to be me!

Bittersweet

Wednesday, May 6 — a day I will remember forever and not with a lot of fondness.

It was my last chemotherapy session (FOREVER!!!).

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The kids with the poster they made me to celebrate my last chemo.Ross with me at the last session.

You would expect that fact to evoke feelings of incredible joy and relief. While there were tiny elements of that, mostly it involved feelings of wondering how on earth I got here in the first place and questioning how I made it to the end!

There are two main reasons why I made it to the end – family and friends. Those amazing souls who have been on this rollercoaster ride with me and who have kept me sane and feeling a sense of strength and hope along the way.

However, it became a day our family said goodbye to someone who was truly strong — Grandma.

Ross’ mum passed away only two hours after I finished my last treatment.

She was one of my greatest supporters and it cut her deeply that I had to endure the effects of this dreaded breast cancer disease just as she had done for so many years.

We even spent a few sessions in the chemo room at The Mount together — taking mother-in-law and daughter-in-law bonding to a whole new level!

Determined and strong-willed — these characteristics Dot possessed in bucket loads. And it was never more evident than earlier this year when she willed herself out of another hospital stay to make it down to Dunsborough for her second eldest granddaughter Megan’s wedding.

Most of us thought she wouldn’t be able to escape her illness this time — or long enough to witness the most beautiful of weddings. But we underestimated her – again!

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Dot and Brian with kids Ross, Marcia & John at Megan & Jon’s wedding in February

We saw her the night before she passed and with a weakened embrace she told me how her and Grandad Brian would continue to be there for us — as they always have been.

My kids miss her terribly but look back with amazing fondness of a Grandma who spent a lot of time with them — teaching them how to do things like play Mahjong!

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Abs as a bub with Grandma & Grandad

She will forever hold a special place in all our hearts and just like I did from my mum, I take a lot of strength and determination from watching her fight to enjoy the amazing life and family I have around me.

Reminders — the good, the bad and the downright cruel

You escape for 10 minutes.

Well it’s probably an hour but it only ever feels like 10 minutes!

Then you are brought back to realty with the stretch of an arm or a look across a room sprinkled with gifts from kind, beautiful souls.

My current chemo drugs keep me laying low for about 10 days after treatment day. Between the actual chemo drugs couple with the anti-nausea drugs I almost feel like I’m existing out of my body — viewing my life from the ‘outside’.

My kids think I look a bit angry — I think it’s the steroids that dilute my pupils to the size of a full stop and add that to the fact I have very few eyelashes and eyebrows left and it all combines to make me look pretty ghostly at times.

For those 10 days I struggle to rest. I know I have to and my body craves it but the steroids keep my body pumping and whenever I take the chance to lie down the horrible thoughts and reminders flow through my veins quicker than the drugs go in!

My mind can’t rest. I lie down and memories of the day, week, month before come flooding back and exacerbate the nausea. I picture the needles going in, the blood going out, the poison pumping through my veins.

The bruises on my arm remind me of treatment day and the blood tests before treatment day and now vein cording reminds me of the battering my left arm has taken since October.

My poor old left arm — it’s been used for 99% of blood tests and 100% of chemo treatment. My right arm is downright not interested in this whole process and has given a couple of drops of blood before shutting down and forcing carers to my left side.

Some people have a lazy eye – I have a lazy arm!

The vein cording, a new phrase I have learnt – was worrying me as I thought perhaps it was something to do with cancer in my lymph nodes – but Professor Chan was adamant my veins were just ‘tangled’. I can’t straighten my arm and it hurts when I reach for something. So off to the physio I need to go!


Other daily, hourly reminders of my life since October 2014 reflect the kindness of the human spirit.

I have been given some beautiful gifts. While they remind me of my daily struggle, they also shout to me through my sometimes blurry silence, that people care — some I have known since  was born and others I have met in the past 18 months.

My amazing long-distance cousin sent me a beautiful angel to watch over me, while one of my gorgeous school-mum friends gave me a guardian angel plaque. I cried like a baby when I opened both gifts — but they are constant reminders that I am not alone — my family and I are surrounded by incredibly generous, thoughtful people who just want to help put a smile on my face even just for that single moment each day when I look across the room.

Please – no more icy poles

The everyday, inoffensive icy pole!

If you were playing on Family Feud and asked for a word to describe an icy pole these might be some of the answers (even from those families you can’t believe win through to another night with some of their incredibly mind-numbingly dumb responses)

* cold, sweet, tasty, hydrating, refreshing, yum!

Well six weeks ago I may have agreed with those answers – but not anymore! In fact I may only eat another two for the rest of my life.

My mind has taken control and the simple icy treat once associated with hot days running around the holiday caravan park or running around under the sprinkler in the backyard now reminds me of something much more sinister – chemotherapy.

When I was going through my first course of chemo drugs – Paclitaxel – I wondered why some of the patients around me were getting icy poles and I wasn’t! Had they been better behaved than me – well perhaps their veins were well behaved (something mine have never been)!

No, they were just being given a different drug. So after 12 rounds of not being spoiled with an icy pole I finally got my turn.

Chemo number 13 and over the nurse came with my sweet treat – just after she’d wrestled with my veins and just before she sat down to slowly administer this new, nasty red drug called EC – (epirubicin and cyclophosphamide).

It’s not quite the “red devil” – that is the name given to yet another different drug which I have not had to have – but it’s a bitch of a thing that has certainly seen me act like the devil! 

The icy pole is used as a way of trying to reduce the onset of mouth ulcers by encouraging the chemo drugs away from your mouth by making it cold instead of a nice, attractive, warm place for the chemo to cause havoc!

Ten days – that’s about the time it takes for me to feel human after a dose of EC – and I get another hit of it this Wednesday. So I’ll apologise in advance to everyone and anyone who comes into contact with me for the 10 days afterwards. 

The nausea is a killer. I have very little patience for anyone or anything. My fingers feel numb, my big toenails are bruised, mouth ulcers are an absolute joy and I’m tired beyond belief. I don’t know if it’s just the EC or the “not for suggestion” bucket of anti-nausea drugs my oncologist has prescribed me to take for three days after treatment. There’s some good stuff in there and they knock me for six as well. 

But I’m learning to cope better with each treatment and learn more about my limitations – I have to or my family and friends will start saying the phrase “better the devil you know” is a complete load of crap!

I become the devil you never wish you’d met. But I have an excuse right?

As for those icy poles, they now represent one of the worst periods of my 41 years on this earth and I can’t see how I’ll ever learn to look at them in a loving way ever again.

As for those friends and family – I have “let them in” a little more along the journey.

My beautiful friend Tania came with me to a Look Good Feel Better session which was all about giving you the confidence to use makeup when your skin isn’t feeling the best and you’ve lost your eyebrows and eyelashes! It was brilliant and so good to have a friend there with me! 

And then there’s been Kate – one of my gorgeous high school friends. We have known each other for 26 years and still she’s prepared to come and sit by my side while i battle this demon. How lucky I am to have these women in my life – and they are just two of a band of people who have allowed me to deal with this my way while also being there to support me when I need it (even if I don’t know I need it)! Xxx

Mourning my old self

March 12, 2015

I’ve been mourning the old me in the past week, more than ever before.

It’s been a hell of a ride since last Wednesday (well the most recent ride anyway) when my chemo drugs changed.

I’ve gone from a weekly installment to 3-weekly regime – and to say the goal posts have moved is an understatement.

On the last lot of drugs — of which I had 12 — I felt very tired the following few days and had bones that ached with the simplest movement, but I never felt nauseous. I haven’t felt like this EVER!

My oncologist provided me with a great range of drugs – steroids, sleeping tables, anti-nausea medication – to help ward off the ugly side effects I may face. The most concerning part is that I think all those drugs worked – and I still feel like I’ve either got a hangover of the nauseating kind or I’m pregnant and experience morning sickness.

I’ve rarely taken any medication in my life but now I am making up for it and my body is wondering what the hell is going on.

I don’t even feel like coffee or wine — what the hell is wrong with me?

And it’s party time at my house when I forget to take the sleeping tablet with the steroid at dinner time — thankfully Beverly Hills 90210 has re-runs on at 3am and it’s not all infomercials!

So needless to say the combination of drugs (intravenous and tablet form) and lack of sleep mean my emotions have been stripped bare and are out there to be manipulated by those around me and by my very own mind.

Walking down the hallways of my own home I see images of beautiful children and proud parents. They all beam at me as though that image captured the best moment of their life. One after they other, they look down at me, rekindling some amazing family memories.

This photo of Abbey and I was taken five years ago. I want that person back.

That person had life and love in their eyes, a beautiful 5-year-old and a crazy one-year-old and planning what adventure this family would take on next.

She also had pretty good hair then and I’ll be asking for that colour again when mine decides to reappear in some normal form!

I look back and think that person didn’t appreciate what she had then and worried about mind-numbingly boring things. But that was life then and it’s very easy to look back and wonder if you wasted those years, those years that have so far turned out to be some of the best of my life.

Would I be mourning this person regardless of being sick? Would I be mourning her as a natural part of the aging process? Probably!

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Last day of the year

December 31, 2014

Wednesday is chemo day.

But not today.

I’ve got this week off and I’m sitting on a deserted beach with a coffee and the paper, reflecting on the year and hoping the next is a bit brighter!

Hoping — but knowing that the next year of my life is pretty much being decided for me.

At the end of each doctor’s appointment they make another one for me and I never really get to pick a day and time — I’m pretty much told when I’ll be back. I guess that’s how it’s going to be for at least the next 12 months and I just have to suck it up!

We have been coming up to Seabird for about the past four years around this time. It’s the most amazing place and we have our friends the Foggos to thank for introducing us to our new summer home — even if we only call it home for a week at a time.

After an hour’s drive we arrive at the boom gates — they lift up and somehow magically your troubles dissolve for just long enough. Long enough to enjoy each other’s company on the beach in the morning, around the pool in the afternoon and at the crest of the beach at sunset.

This morning I took the chance to stroll along the beach up to the café to get my morning coffee fix. The wind was howling and as a result no one was on the beach — I had it all to myself for a while. The peace and quiet was refreshing.

Cheers to the last day of the year and hoping we all find a bit of peace and quiet when we need to contemplate life and how we are going to take on the next hurdle put in front of us!

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Christmas Day – out comes the first hat!

December 25, 2014

Wearing a woven hat on a hot Christmas Day with no buffer between it and your scalp is a pretty strange feeling!

Usually there’s plenty of hair on my head (my hair is thin but I have a lot of it) but this is my first full day with a shaved noggin and I’ve decided hats will be the way to go for me most of the time.

The wig is hot and to be honest, I can’t really be bothered “dressing up” in that every day. I am a pretty wired control-freak but I am trying to simplify my life one small step at a time and just throwing on a hat when I need to cover my head seems like the most logical thing for me to do.

But now it’s going to be obvious that something is wrong.

While I had hair, even when it was thinning, people around me who didn’t know what was going on didn’t have any reason to look at me differently or ask someone if I was ok.

Now, I can’t hide it — and I don’t want to. What’s the point!

While sometimes I really don’t want to talk about myself and what is happening with my treatment, it’s what most people want to know. Not because they are all Mrs Mangels (that reference is for those of you old enough to have seen Neighbours in the “olden days”) but because most of them are genuinely concerned.

I think the thing that scares most people is that this could all be happening to me. I mean if it is happening to me, what is stopping it from being them, their mother, sister or friend.

I’m 41 and I’ve barely been sick a day in my whole life. I’ve never been under a general anaesthetic, never broken a bone and hadn’t had a blood test until I was 30.

Clearly I was saving myself to do as many of these as possible in 2014, 2015 and probably 2016.

Anyway, I now have a nice little range of hats — unfortunately my favourite is a black velvet cap that is bloody hot — and I guess a range of beanies will come in handy in winter too!

But first — cheers to Christmas surrounded by family xxx

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The first “hat for a reason” – Christmas Day 2014 with the loves of my life

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The kidlets with their wonderful grandparents

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A very happy camper with her polaroid camera

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All he ever wanted — a remote control boat!

From balding to the big shave to the nude melon

December 24, 2014

Been simmering on this thought.

I really wanted Abbey to be ready, emotionally, before I got rid of what hair was left on my head.

She still didn’t want me to do it today — but my beautifully mature, kind and considerate 10-year-old realised how bad I was feeling with my hair coming out in clumps that she finally gave me the OK to get rid of it.

It was amazing how I went from thinking about the big shave every day for nearly three weeks to just waking up today knowing I would take the plunge.

It was empowering. I was choosing the final day of existence for my remaining locks.

To be honest I felt like an old man in denial who was going to have to work the “comb over” look — and I wasn’t prepared to let that happen.

Having strands touch my face like there was a bug on me sickened me. I had had enough of hanging onto something I was losing control over — so I gathered my beautiful family in the backyard and off we went.

The clippers were proudly supplied by my younger brother Mat who had 15 years earlier shaved our Mum’s head. We spoke about him doing the same for me but agreed Ross and the kids should be the ones to help me — it was a process we all needed to digest and the best way to do that was to do it together.

With clippers, ipads and iphones in place we set about giving me some power back.

Abbey and Jack couldn’t do any of the shaving – they filmed it and photographed it – somewhat begrudgingly but they knew what it meant to me to feel “free”.

This is how I looked this morning!

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Pre-shave family pic

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Then this happened

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And now I’m a nude nut with a decent wardrobe full of new hats, scarves and of course a wig. And now I have to think about putting suncream on my head to cover the space in the back of my caps where my ponytail used to poke through!

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While this will take some getting used to I keep going back to one thought – today is Christmas Eve and while I will wake up bald tomorrow, Sydney Siege victim Katrina Dawson’s children will wake up on Christmas morning without their mother! They are 8, 5 and 3 years of age.

I will have my children and they will have me — and we will celebrate another beautiful time of year together — hat and all!