One step (shoelace) at a time

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.

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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.

 

 

 

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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.

Heaven calling – in the best way!

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Life should be lived — especially on Whitehaven Beach

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!

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The sun sets over the infinity pool
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Me, Claire and birthday girl DJ on our private Hydeaway Bay beach

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.

It was also an opportunity I took on after taking strength from the COSA oncology conference I attended last year as part of the Breast Cancer Institute of Australia’s Australia and New Zealand Breast Cancer Trials Group IMPACT advocacy program.

The women I met at that conference were simply amazing and made me believe that, post breast cancer treatment, I could do anything I wanted to do.

So far this year that’s the attitude I’ve taken.

I wanted to celebrate with my beautiful friend – so I did!

I wanted a new job opportunity – so I went out a got it!

Now I just have some family goals to set. Then I’ll go about doing that as well.

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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