3 Years, 1 month, 15 Days

3 Years, 1 month, 15 Days — the time that flew by between my first breast cancer diagnosis — and my second!

The first was on October 14, 2014. The second, November 29 2017.

No, 2017 didn’t end well for us. And tomorrow, six weeks after unexpected but rather urgent hip replacement surgery, I start a 10-day course of radiotherapy.

While the diagnosis of a tumour at the top of my femur followed by major surgery six days later (December 5) put our world into a blurry spin and another rung on our ladder of uncertainty, there was ultimately some good news. Well we took it as good news anyway.

The tumour pathology results showed the same kind of tumour as before – it hadn’t morphed into anything more complex! That meant my oncologist made the decision that a small amount of radiation is all I would need as follow up treatment to the surgery – no chemo! When you’ve had six months of that the first time, I can tell you that being told it wouldn’t be of any great use this time is like hearing you don’t have cancer at all!

The second diagnosis was quite the surreal shock (as I imagine it almost always is)! As was being told that the urgency wasn’t getting rid of the tumour, it was securing my leg so I didn’t fracture my femur and do more damage that needed repair.

Did I fear the cancer would one day return? Of course I did. Was I living in la-la land not completely and realistically acknowledging that it could come back? Maybe!

After a second diagnosis do I feel the same? No.

The fear of yet another diagnosis is now at extreme levels. If this little cell splintered off and found a cosy home at the top of my hip, who is to say other little buggers haven’t gone searching for a home somewhere else in my body – where they may lay dormant for one or 20 years.

Aussie sweetheart Olivia Newton-John, who I have always had enduring affection for, was recently diagnosed for a second time – 25 years since her first diagnosis. Like me, she too thought this time that she just had sciatica and that’s what she was being treated for.

By the way, my affection for ONJ started to foster when I was the ripe old age of 7. My mum gave me one of her albums for my birthday. I still remember the cover. It was like a pastel drawing/painting of the beautiful woman herself. (I have since found the album cover, and the name of it was First Impressions. Songs included a few you’ll start singing in your head as soon as you read the titles –  If Not For You, Take Me Home Country Roads and one of my faves, Let Me Be There.

Are you singing yet?

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Now, our second breast cancer diagnosis mirrors each other and during a television interview recently, the survivor and driving force behind the Olivia Newton-John Cancer Wellness and Research Centre, she said she thought she had sciatic and that all she wanted to do now was get back on the tennis court – my ultimate ambition!

But I digress.

Around June last year I went for a run with my eight-year-old who wanted to do some cross country training ahead of his school carnival. The next day pain shot right up my left leg and into my hip and lower back.

The pain was persistent, so off to my chiropractor I went. For months we worked on what we thought was the problem (and those months included me just hoping and wishing wilfully that this would all just go away).

It didn’t. So my Chiro sent me to the physio for treatment, including dry needling to get the blood flowing through my muscles. Four weeks later and the dogged pain was still there. So we both agreed this wasn’t working and that the next step was to go to the GP and ask for a referral for scans of my back and hip.

The scans were supposed to show damage to my sciatic nerve that I dared to dream could be fixed with a jab of cortisone or at the very worse, a simple surgery.

They didn’t.

The GP called me in a few days later. She looked at me and said “I’m so sorry,”

What, sorry, for what!

Oh my God, no. Please, no.

My babies. How was I going to tell them? What happens to people when cancer comes back? It can only be worse right? But this is in my hip? Where else must it be?

Four hours later I was in my oncologist’s office. “I’m so sorry,” she said.

Sorry, why? Was there nothing she could do?

I forgot who I was talking to. I forgot this was Professor Arlene Chan. The woman, the legend who leads the clinical trials unit at Breast Cancer Research Centre-WA. She got me through this once before and she’s ready to do it again!

“It’s ok,” she said. “I have a plan!” She always has a plan!!!

That plan started with securing my leg through the work of orthopaedic surgeon Dr Sam Young. Perhaps he would just ‘pin’ it. Perhaps not.

A full hip replacement was the decision and in doing so, he would have a fair crack at removing the tumour — along with healthy bone and muscle (including my hip flexor) that were impacted by it.

The surgery was two days after we celebrated our eldest Abbey’s 13th birthday. Once again, the impact of all of this on the kids is emotional, draining and testing.

Celebrating Abbey's 13th birthday
Celebrating Abbey’s 13th birthday

Five days after surgery, and after graduating from my walking frame to crutches, I was home with my bionic hip and leg.

My new hip
My new hip

I couldn’t do much (except sit on the couch watching the cricket while my hubby vacuumed and I recovered) but I was well enough to enjoy Christmas with the family before heading to Seabird to spend time with some wonderful friends.

Steady as she goes
Watching hubby vacuum
Christmas Day with my crazies
  Christmas Day with my crazies
With Court and Alexis on New Year's Eve
With Court and Alexis on New Year’s Eve
New Year's with Tan
New Year’s with Tan

Now, I’ll go and set my alarm so I get to hospital in time for my first of 10 radiotherapy appointments this time around.

In just over two weeks I’ll be back at work in my new job at St Mary’s Anglican Girls’ School.

I can’t wait to start my new “normal” life.

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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)!

Preparing to lose control

There’s meals galore made and in the freezer.

My shoes have been sorted and lined up at the bottom of my wardrobe!

Birthday presents for our youngest have been purchased ready for his seventh birthday on January 31.

School shoes have been bought and all the school uniforms ironed ready for the start of Term 1 on February 1.

This is not about me being a super-organised, super-mum.

This is about control.

From 4.30pm this Wednesday I will be somewhat out of control. Well the control of my life will be in the hands of others at least – doctors, anaethetists and nurses.

So the past few weeks have been dedicated to organisation, planning and controlling as much of my life as I can before I go under the knife for the next step of my ‘journey’ – a second mastectomy and bilateral reconstruction.

I’ve tried not to think about this procedure – there’s not going to be a lot to like about it (at least not for the next eight months or so). But in essence it’s an operation. It’s something that, in consultation with my surgeons and oncologist, we have decided is the most pro-active and sensible way to significantly reduce my risk of another Breast cancer or ovarian cancer diagnosis (removal of my ovaries in a few months time should take care of that)!

And I’ll do whatever I have to to reduce that risk. I’m 42 – I’ve got a long life to live and I want to live it with new boobs so I can feel as ‘normal’ as possible. (I dislike the word normal as much as I dislike the word journey! After all, what is normal? For me, I’ve chosen to undergo reconstruction. My son finds it all pretty fascinating. Especially after he just assumed this is how I would look (lopsided) for the rest of my life. He asked me if my boob would grow back? I said it wouldn’t but a clever man named Tony was going to make me a whole new one and fix the other one!

In the past two weeks I’ve had a friend undergo a mastectomy and another friend had to say the saddest farewell of all when she lost her 23-month-old in a tragic accident.

Life is all about perspective and while what I will go through this week and following months is plain crappy and cruel, it’s what I have to do to save my life and ensure I see my kids grow up. And that’s what it’s all about. I might (well I bloody hope so anyway) end up with a nice pair of boobs, every decision I have made has been about survival – nothing more, nothing less!

Who knows, I might get lucky and score a hospital room with a river view from where I can watch the Australia Day fireworks along the Swan River! Or maybe I can make friends with someone in one of those rooms – if only I could take a bottle of champagne with me!


These two are what life is all about xx

A year ago today!

Milestone, anniversary, landmark moment, commemoration — whatever you want to call it — today marks 12 months!

It was 12 months ago when Ross and I sat in my GP’s office and she said THOSE words “you have breast cancer.”

We knew. We had known for a few days – not officially – but we knew. The scans, biopsy, phone calls to bring our GP appointment forward a day – it was all adding up to bad news.

I honestly thought my ‘shit fight’ would be over by now. I had honestly hoped at least.

Memories from the last 12 months
Memories from the last 12 months

When I first met with my surgeon three days after my diagnosis, one of the first things he told me was to put my diary away! I like to be organized and still love my written, hard copy diary. I had it with me that day and as he talked about treatments (starting with chemo, followed by a mastectomy and then radiotherapy) I flicked through my diary pages and, for me at least, I had it all done and dusted by now.

And I guess his treatment plan is done, but my diary planning didn’t account for a dodgy BRCA gene, a delayed start to radiotherapy because movement in my arm had been restricted by surgery and my lack of understanding about how long recovery would take between all these stages.

It’s been a mongrel of a ‘journey’ and while it is not over within my timeframe – with reconstruction, second mastectomy and ovary removal to come – it’s all gone OK!

So, here’s what I’ve learned:

  • Every case of breast cancer is different. Every treatment is different. How everyone reacts to their treatment is different.
  • Phenergan makes me sleep like a baby (even when the cricket or tennis is on the TV in the chemo room)
  • Taking steroids at 10pm and then forgetting to take your sleeping tablet sent me loopy and meant I was wide awake at 3am buying tickets online for me and my 10-year-old daughter to go and see her YouTube hero Tyler Oakley (and here’s the three of us before the show because in my drugged-up stupor I also purchased VIP meet-and-greet tickets)!!
Abbey, me and Tyler Oakley
Abbey, me and Tyler Oakley
  • People are inherently kind, generous and just amazing – from dinner, High Teas and lunch box snacks to flowers and fluffy robes
  • Oncology nurses are some of the most incredible people on the planet
  • I am only just starting to like the colour pink again! I was diagnosed in October – breast cancer awareness month – and at first I wanted to pop every bloody pink balloon floating around in Dr and radiology waiting rooms
  • I love my family more than anything on this earth and hope out of all the lessons they have learned about life in the past 12 months they truly know what is means to have empathy for other human beings
  • It looks pretty funny (and lopsided) when you forget to put your temporary prosthesis in your bra!

And what I’m hoping for now:

  • That I’ll be writing my 2-year ‘anniversary’ blog from America when we take our family back there again having been in 2013 to help celebrate my 40th birthday. We thought that was a once-in-a-lifetime trip, but given what we’ve been through in the last 12 months we’re busy planning (and saving) to go back again once my surgeries are done
  • After the final chapters of treatment/procedures are over, at the end of every annual check-up I get told “see you again at the same time next year” and not any sooner!
  • The sickening and still very raw and emotional memories of treatment fade sooner rather than later
  • I am always thankful for the amazing family and friends I have in my life – I could not have done all of this without them

Underestimating and wishing!

Meeting the fifth major player in my medical team took the wind right out of my sails yesterday.

Here I was, seemingly about to breeze into a five-week stint of radiotherapy with the idea that my two follow-up surgeries could be over and done with by the end of the year.

Well, I was way off!

Everything has gone as well as it can since my breast cancer diagnosis last October. Scans all showed the tumors were contained, chemo was degrading but the outcome was the best we could ask for and surgery appears to have depleted my body of those nasty bastard cancer cells.

The radiation ‘clean up’ will be time-consuming and monotonous — but I only see it as one of the small hurdles (like those the under 7s start with at Little Athletics)!

Next stage is a mastectomy on the other side and, at the same time, reconstruction of that side and a complete rebuild of the other. None of these things HAVE to happen. But they are likely to save my life!

As one of those ‘genetically challenged’ people with a BRCA gene mutation (my doctors reckon they know most of us by name) my chances of cancer rearing its ugly head in my other breast and /or my ovaries are increased. So I’m chosing to lose them!

That means an even longer time under the knife and in recovery than I thought.

Underestimating the time it may take my skin to heal after radiotherapy was the first lapse of time I inconveniently overlooked — as was the time needed between the first part of the reconstructive surgery and the second.

In the scheme of things, I hope, when I look back in 10 years’ time it will be a tiny, minute spec of my life that I had to put in the hands of this BC. It’s just that it’s all been a bit overwhelming this past 24 hours to think of what lies ahead in the next 9 months (not the next 4 as I really hoped it would be).

What is a few months though hey? Well I’ve already been part of this fight for 10 months so a few more can’t hurt.

Trouble is I just wanted it all over and done with, to live life not defined by cancer. That will come — as a family we all know it will — it’s just going to take a bit longer than my impatient mind and body had hoped!

Date night with hubby last week
Date night with hubby last week

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!!!).

Kids with their poster on my last day of chemo IMG_9095 Ross with me at my last chemo session IMG_9141

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

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