This morning I tied my shoelaces for the first time since December 5 last year. Over four months ago.
And it’s not because I’ve been wearing thongs all summer and into the first weeks of autumn.
Since yet another day that will forever be etched in my physically-battered memory I’ve had a rather substantial surgical rod hammered into my femur and had a chunk of bone and a mass of muscle, including my hip flexor, removed. That all came on the back of a secondary breast cancer diagnosis when a tumour was found to be lying angrily at the top of my left femur at the end of November last year.
As recently as two days ago I never thought I would be able to put my own shoe on again. (If you think putting the shoe on is hard, think about the difficulty of the sock!!!). The distance from my hip to my toes has felt like the length of a javelin pole!
Yet, sitting here today with two shoes on my feet that I didn’t have to ask anyone (in particular my gorgeous 9-year-old boy who has done most of the shoelace tying) to help me put on is a pretty satisfying space to be in.
Rehabilitation does not come easily after any surgery, let alone a whole joint replacement.
At first, post-operatively, hydrotherapy help get my leg moving again.
Then I went back to work full-time and sitting at a desk for the majority of the day didn’t help my cause.
But there are no excuses. I thought (hoped) things would just heal themselves and suddenly I’d be back to “normal”. Surprise, surprise, that didn’t happen.
Physiotherapy was the answer for me. A physio with an understanding of hip replacement surgery, the recovery process and the mindset that goes with it!
It wasn’t an easy start. My new physio had to wrap his head around not only my body’s physical issues, but its mental ones as well/
“Why are you still walking like that?” he asked as I limped in — but was not in any pain.
It took a few weeks but he worked on my mind as much as my body and now, I’m back walking, trying to hit the tennis court (albeit gingerly) with my son and, even more momentous – tying my own shoelaces!
The moral of the story — take it easy on yourself and find yourself medical professionals who will do the same while also pushing you to reach your goals.
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?
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.
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.
Five days after surgery, and after graduating from my walking frame to crutches, I was home with my bionic hip and leg.
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.
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.
An email hit my inbox in January from a gorgeous friend who was preparing to hit a birthday milestone ( one I reached a few years ago!!).
It contained an invite to spend a week with her and some of her dearest friends in the stunning Whitsunday Islands.
Incredibly my first reaction was “Oh well, it’s a shame I can’t go – they’ll have an amazing time!”
But it just so happened that I was up in Seabird on our family holiday when I got the email. That meant for the rest of the day I didn’t have a lot to think about other than what to include on my sunset platter or, more importantly, why couldn’t I go?
Other than the bleating obvious – a lack of funds, a lack of available holidays (zero days to be exact afterall, I do work for myself) and the fact I’d be away from the kids for a week – I really had no other excuse not to go.
So I went!
And it was bliss. Eight of us were in heaven – literally! The house we stayed in was in a faraway beachside location called Hydeaway Bay.
And hideaway we did – in a rental house aptly called Heaven’s Gate.
I never thought I’d stay anywhere like it. From our own private beach to our tennis court, spa and infinity pool from where we watched some amazing sunsets!
I decided to go for many reasons. The main one being I adore the birthday girl and wanted to share her special day with her. But, post cancer, I have also vowed to try to live life as best I can – for me and everyone around me.
That philosophy has also led to me recently accepting a full-time, five-month work contract.
It has thrown us a bit of a family curve ball but we seem to be coping (although, in all honesty it’s only been three days so far)!!!
This was an opportunity to take on a role that would give me a chance to get back into an office and working away from home where I have spent the past three years working since my last long-term contract role finished.
Isignoranceblissor is ita way of delaying theinevitable?
Let me explain the reason for the question!
I had the second stage of my breast reconstruction in June last year – when I had my air expanders removed and implants put in.
I knew all along that it would take a few more procedures after that to get to somewhat of a ‘complete’ new set of boobs. But anyone who has been through this knows it’s never completed – there’s always another procedure months or years down the track!
Anyway, a few months after that most recent surgery I had some real discomfort and issues with the nerves around my left implant. My surgeon gave me some medication that did its job on the nerves but sent me quite loopy (loopier than me on a normal day)! Luckily I only had to take a couple of tablets.
He told me to go back and see him a few weeks later – that was seven months ago!
That’s what you call avoidance!
I’ve gone about life, probably ignorantly but I think understandably so, knowing that as soon as I go back to see him he’ll book me in for my next procedure. For me to feel better about myself physically it needs to be done, but I don’t think I’ve been emotionally ready to deal with – until now.
I’ll garner up the courage to call my surgeon’s office this week – I promise!
Physically the most exciting thing about the past seven months has been the rate at which my hair has grown! My ponytail is getting higher and, thanks to the effects chemotherapy had on my hair, I can chose to wear it naturally curly or straight!
You have to keep looking at the bright side don’t you?
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.
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.
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.”
The air bags are out and the implants are in! Too much information — sorry!
It’s now been five weeks since my most recent surgery and hopefully one of my last. This was a pretty involved one although it only meant two days in hospital which was amazing but brilliant.
A 6am hospital admission was followed by a visit from my reconstruction surgeon who drew all over my chest with a permanent marker before I was wheeled down to pre-op where I was met by my general surgeon and the anaesthetist.
The general surgeon had his turn first, removing my ovaries and tubes – a decision we made based on the fact that I have the BRCA2 gene, which increases risk of developing ovarian cancer.
Not that I was aware of the changeover as I was well and truly off with the operating theatre fairies, but the next surgeon then came in to remove my the air expanders that had been in my chest since January and had totally outstayed their welcome.
They were bloody awful things and I was ready for them to find their way into the rubbish bin. The implants are a lot softer and more natural and I can now even sleep on my side – which is sheer bliss!
In the weeks following this, my fourth surgery since my breast cancer diagnosis in October 2014, bootcamp called. I’d never done a class before and the only reason for this attempt was to support fellow breast cancer survivor Nicola Peachey who hosted the event to raise money for Breast Cancer Care WA’s Purple Bra Day.
Incredibly, at the bootcamp, I ran into another gorgeous woman who I had met (although she was a lot clearer about our first meeting than I was). Sharon re-introduced herself to me. We were both at a Look Good Feel Better workshop last year. Now we both had a head full of hair (check out mine below) and were coming out the other side of treatment stages of our life battle. People come into your life for many reasons, and these two have certainly entered mine to help with my sanity! They are absolute gems!
From here there may be some ‘minor’ surgeries but they are more for cosmetic purposes.
Most importantly our little family of four is counting down the days until we head off overseas for four weeks. In 82 days, 2 hours, 38 minutes and 22 seconds (the Countdown app on my phone is very specific) we’ll be on our way to the USA. We all need something to focus on and we can’t wait to create some more amazing family memories.
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!
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.”
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!
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!
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)!
This was the only real and honest response I could muster when my beautiful family and friends asked me how I was coping after my most recent surgery.
On January 21, 2016 I woke up in my hospital bed, showered, then got wheeled down to the now familiar pre-operating unit at The Mount Hospital.
I met yet another anaesthetist, then surgeon one and surgeon two. This was a biggy! The first surgeon, my breast surgeon who took my first breast last June, did his bit – taking my second breast and leaving the skin so surgeon number two – my reconstructive surgeon – could come in re-build that first side and then insert my air expanders into both sides.
Medically the surgery was a bilateral lat dorsi – essentially they used my back muscles to rebuild my front! This was a lot more traumatic on the right side as it was flat as a tack and needed to be rebuilt from scratch.
I get queasy with a paper cut, so imagine how it felt knowing I’d have a 20cm scar running from around my shoulder blade down to near my hip – and knowing that piece of tissue was removed to help make me a new boob!
It’s almost impossible to put into words how you feel when you look down at your chest and you see your back. Bride of Frankenstein comes to mind!
But you know what, the body is just amazing and mine is rebuilding itself – one post-Cancer part at a time.
Recovery from the surgery was nothing short of cruel as anyone who has had major surgery would know. Three days lying helpless in a bed, unable to move because of the pain that comes when you try to use any of the muscles surgeons have pulled from all parts of your chest! Cathedas, sponge baths, having to call out “Hello” in a meek childlike voice when you can’t reach your nurse call button because you dropped in on the floor – all the joys of post-op.
The nurses were sensational – absolutely nothing short of amazing. They’ve seen it all before and knew when you were ready to get up and moving and weaned off the ‘good drugs’.
After a week in my city-view hospital room (where the timing wasn’t bad because I had a front row seat to the City of Perth Australia Day Skyshow) I headed home.
Tender and tired, the next few weeks were pretty quiet – with a family birthday celebration for our 7-year-old weaved in there on the first weekend after I got home!
A couple of weeks post-surgery and the expansion started. As did pain and total discomfort I’ve never experienced before.
My surgeon used air expanders. Amazing inventions that meant after he expanded them over the first three weeks or so using their remote controls, he gave me the ultimate power and let me take the remotes home. However, when he expanded them he added around 30milograms of air at a time. The next day the pain was quite debilitating – the skin was stretching (especially on the right side where radiation had created a lot of scar tissue and tightness).
Some nights I would just sit on the side of the bed, bemoaning how cruel this process was. Then I would see the doctor who told me to take more painkillers – I had eased off a bit – but got back on them pretty quick and it helped (fancy that)!
Now 11 weeks post-surgery and my expanders are pretty much where they need to be and we’re preparing for the next surgery. That will involve taking out the air expanders and inserting permanent implants. It also involves an oophorectomy (yep, it’s a real word) where my ovaries and tubes will be removed.
I’m only expected to be in hospital overnight.
I’m slowly getting my energy back and have even signed up to a HBF fitness program — time to get moving and stop with the excuses!
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!