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!
The stress of Christmas seems to be keeping me sane!
Sounds odd I know, but the more I worry about getting my kids presents they want (because they don’t really need anything), sending Christmas cards to family in the Eastern States (sorry but I haven’t done those yet) and what is on the Christmas Day menu (veggies or salad), the less I think about the next chapter in this “shit fight” (ie: I dislike the word journey immensely).
The next chapter involves about half a day lying on a cold, hard operating table while two surgeons take more then give more!
In the second last week of January I will have a second mastectomy (surgeon number 1) and then the first stage of my breast reconstruction (on both sides with surgeon number 2).
Without going into too much detail, a quote from surgeon number 2 sums it up:
“It will be hell! But you’ve been there already so you know you can handle it!”
We’ll soon find out.
There was a story in The West Australian this week about breast reconstruction and why women chose to have it or to live without.
Everyone’s choice is personal and based on many, many factors. It’s not an easy choice — especially after you meet with the surgeon who talks you step-by-step through what he is going to do to you!
Reconstruction is not necessary, I don’t have to have it done. But I want to.
Like growing my hair out! People have been very kind and complimented me recently on my hair and saying that short hair suits me. But I like long hair and I miss my ponytail! That may be a bit sad for a 42-year-old but it’s how I feel!
Same with the reconstruction. Growing my hair out and getting new boobs will go a long way to helping me feel like myself again — well as close to as possible. Me, my family and friends have endured a lot of emotional and physical upheaval in this past year there have been many things out of our control.
Growing my hair back and going under the knife to rebuild are in my control — and I would like some control back.
I lost a bit of control a few months ago when an infection in my scar reared it’s head. It was the first real setback I’ve had in my treatment.
In another first for me, I faced day surgery and ‘twilight’ sedation. It all went really well and it was just an infection and nothing more sinister — the worst part was the pain of the anaesthetic being pushed into my blood stream.
Seriously, after everything I have been through in the past 12 months, including seven months worth of chemotherapy, I have never felt pain like that.
It burnt and, while I can normally contain my displeasure and hide any signs of pain, this time I couldn’t.
After struggling to put the canular in and reminding me about my small veins, the anaesthesist said “this will sting a bit” A BIT!!!!! It bloody hurt. Even though it lasted all of about three seconds before I was off with the fairies, that memory will stay with me for a long time!
The focus for the next six weeks is to celebrate another Christmas with my gorgeous family and to strip life back to the important stuff — spending time together and creating memories (and taking photos, which I do a lot of and my family will appreciate one day)!
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.
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)!!
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
That was my first reaction when one of my friends Kirsten, who is the Partnership Manager at Breast Cancer Network Australia, asked me if I’d share my story at the first BCNA Pink Lady Luncheon to be held in Perth.
I wasn’t even overawed at the thought of being introduced on stage by one of my all-time favourite sportsmen, Shane Crawford. Well, at least not right up until the moment he said my name and invited me to stand in front of over 100 people, including breast cancer survivors and those like me who were still in the midst of their ‘journey’ (still don’t like that word. In fact, I told the crowd at the luncheon that and my friend and MC Nat suggested a better term would be shit fight – and I think that sums it all up a lot more thoroughly!
A big crew of former Netball WA staff gathered at our table and were there to support BCNA and me as I ventured up onto the stage after an emotionally-overwhelming video showing the guts, determination and generosity inspired by Shane’s amazing bike ride from Melbourne to Perth in 2013. This wonderful soul raised over $1.3million for BCNA during that ride!
I have to take you back to the first moment I met Shane. He asked how I was going with my treatment and while I gave him a brief answer to my current state of play, typically the conversation turned to a bit of fun when I gave him a gift from my son Jack.
When I told Jack, an avid Hawthorn supporter, I was meeting Shane, he said “Who?”
In his defence I was pregnant with him when Shane played in the 2008 premiership with the Hawks and then retired – so he hadn’t played a game in Jack’s lifetime! He was more than impressed when I went through Shane’s football career and promptly decided that Shane would like one of Jack’s Auskick footy cards – signed of course!
In one of my favourite moments from the lunch, Shane took the card and filmed a little video thanking Jack for the card, saying “I’ll put it next to my Brownlow Medal and my premiership medal.”
It was just gorgeous and Jack was soooooo excited when I showed him.
Anyway, my turn came and I walked on stage, tissues in hand, thinking I could handle this. Eventually I did. But after another gorgeous friend, Angie, came up and held me, calmed me down and got me breathing again. I was flooded with emotion as I started to tell my story, it felt so raw. I looked out at faces, many of whom knew exactly how I was feeling. There were many knowing nods of the head.
It was an absolutely amazing event to be a part of. Getting to watch Hawthorn’s final win later that night sitting next to the great man Crawf later on was a mere bonus.
I had eight more radiotherapy treatments to go and had been for my 22nd session the morning of the luncheon. Heading to hospital every day for six weeks – that had become my new normal.
While it was monotonous going to treatment every day – generally I would drop the kids at school and head in – it only took about 30 minutes each day and I was home by about 10am. And it wasn’t even close to being as horrendous as chemo – it was relatively painless. Well it got tougher at the end when your skin looks like it’s been exposed to extreme UV light for many hours. Eventually the skin broke and got pretty sore, but nothing a good dash of paraffin and moisturiser couldn’t fix.
Anyway, that’s onemore treatment done and dusted – now we just have to plan for reconstruction (which will include a second mastectomy) and removal of ovaries. We’ll worry about all that in 2016!
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!