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

Last day of the year

December 31, 2014

Wednesday is chemo day.

But not today.

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

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

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

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

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

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

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

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Christmas Day – out comes the first hat!

December 25, 2014

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

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

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

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

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

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

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

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

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

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

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

But first — cheers to Christmas surrounded by family xxx

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

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The kidlets with their wonderful grandparents

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A very happy camper with her polaroid camera

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All he ever wanted — a remote control boat!