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Being real & the back story…

October 4, 2014 / 40 Comments

I arrived home last night from the Big Smoke – from my third of four rounds of chemotherapy.

To a wagging Great Dane, three sets of welcoming smiles, along with a beautiful donated home-made hot meat pie, and a chocolate cake from a friend.

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Happy smiles and home-made meat pie!

There were more sweet messages in the mail for me and my crew. I admit to being a little overwhelmed at the response of everyone to my current health challenges… so many beautiful notes, flowers, gorgeous cards and incredibly thoughtful care packages have arrived at our mailbox. I feel very blessed, and at times, a little uncomfortable.

Is that weird? I don’t want to seem ungrateful – each offering has been exclaimed over by my family members and treasured by me – but I do feel a bit… well, overwhelmed.

Among the many kind messages are references to my ‘strength’ and being ‘inspiring’… to be really honest, I do not feel that response should belong to me. I am one of so very, very many. Perhaps not many other people undertaking this challenge open up about their experiences – at least not people from my part of the world? Bushies are notorious for stiff-upper-lips and keeping their issues closely guarded. For many of them, what I do share here is probably a bit unbelievable.

And perhaps on the other hand, I need to not gloss over and guard some of this experience – perhaps I need to share that I don’t find it all easy. I never wanted this blog to be a navel-gazing, ’woe is me’ kinda place – it’s not my general focus in life. But maybe I do need to be a little more even-handed in my telling of this part of my story and why I deal with it the way I do… sharing the reality and the back story that helps me through.

KEEPING IT REAL…

Firstly, it has hit home quite hard to me over these past few weeks how easy I have it compared to so very many people. People I have ‘met’ on cancer support pages (which I have to tell you, can be quite confronting places sometimes), people I have had message me with their stories, and people I meet in the chemotherapy wards. So many have so much more uncertain outcomes predicted for them than I. I have been extraordinarily lucky in having such an early diagnosis (and have also chosen to be quite aggressive in my choice of treatment). I plan to give cancer as little chance to return as possible, through medical options and natural support. And I know my prognosis is very, very good. I have a HUGE head-start.

Secondly, I am having just four doses of chemo – one every three weeks. I completed my third dose on Thursday and I see the light at the end of this part of the ‘treatment tunnel’. I now consider the chemo the hardest of my ‘things to deal with’ really. The surgeries were definitely steep hurdles, the decision to go bilateral for my mastectomy was possibly the most challenging of that part of the treatment. But what a good decision (for me*). ‘Operation Double Barrel Shock and Awe’ unearthed some more nasty little cancers and dealt with them in no uncertain terms. And with this choice, no need for radiation. (Bonus).

three down
Three down, one to go. Yay!

The chemo? Let’s just say it’s no joyride. It’s tougher than I imagined… the drawn-out-ness of it can mess with your head. A friend (who had the same amount of sessions) told me at the start :

The first chemo, I was gung-ho.

The second I was okay.

The third I was pretty reluctant.

And the fourth? They had to drag me in.

I kinda get that now. I had hoped I would breeze through it like my longtime friend Kim. The one who worked the whole way though (except for actual chemo days). But no. The discomfort as the bone marrow regenerates – through my pelvis and hips and lower back – for around 48-72 hours in that first week post-chemo, is something else. I do my best to think of it as ‘positive pain’ knowing that my body is rebuilding all those good cells and ‘coming back. I have had to resort to painkillers though, which let me rest and achieve small things in my day. Washing. Eating. Typing a little. Sleeping a little. Staying sane. But I also resent these tablets, as they slow my system and dull my senses. And anyone who knows me, knows I HATE feeling fuzzy.

And that’s the other thing… the general ongoing fuzziness. Chemo brain. It’s real. Talk about seriously forgetful. I mean I was a little scatty before, but now? The number of times I walk into a room to do something, stand there for five minutes and then give up trying to remember what the heck I was there for… dozens. And dozens. Tiredness is also bit relentless in those first two weeks after each session. I keep reminding myself this is all temporary. And quite necessary to get to the end of this health challenge. To achieve ‘insurance’ against any rogue escapee cancer cells roaming my body trying to take up permanent residence. Cancer is way too prevalent in my family, and my husband’s family, to not grasp every weapon at my disposal to ensure my own family have me round a lot longer!

And before everyone messages me, YES I am doing my version of ‘holistic’ – I am doing regular physio, I have an array of vitamins (recommended by my fabulous oncologist) that make me rattle, I am eating pretty healthy meals (lots and lots of greens), am about to do the juicing thing, and cutting as much stress as possible from my life.

I am ever mindful of the important things in my life – my family, the good that is still there in the every day, being grateful to live in a wonderful country that gives me access to amazing healthcare. Counting my blessings for the support offered me from so many parts of my world. My mental health is pretty solid. I am so very lucky to have the kind of natural chemical balance that helps me stay steady. And to have family and friends to catch and lift me when I wobble. Lucky.

But can I take full credit for any of these things? Nope. And am I unique in these things. Not by a VERY long shot. I am one of an army of people facing down cancer in the best way life has prepared them for. Each of us dealing with it with their own personal arsenal of strengths.

And we DO all have our own arsenal – the particular unique skills we gain along the way. It’s sometimes easy to forget them in the midst of an emotional and confronting time. It was no different for me. During my breast cancer adventure, I definitely had moments when I felt lost. I had a medical specialist that I couldn’t deal with. And, after some tears and with some good advice, I changed doctors. Because my previous medical experiences have taught me to make conscious decisions in my own health care and that of my family (even if they are hard to do) when your gut instinct is telling you NO.

THE BACKSTORY

The major weapons in my arsenal have been gleaned through lots of experience. Experience of serious surgeries and difficult diagnoses. You see, among my own previous hospital visits (far more than I care to recount here) was one which altered my outlook at a reasonably young age, and two which made me comprehend was sheer terror really feels like.

I was in my mid-20s when I was diagnosed with an Arnold Chiari malformation. It’s a pretty rare condition which I had been battling with on and off (not knowing the cause) since high school – weird terrible headaches that no medication can touch, and shocking dizziness. It’s basically caused by a hernia (usually congenital) at the base of the brain which prevents the fluid moving around the spine and brain as it should. As MRIs were fairly new technology back then, it took them a couple of goes to FINALLY find it, in the final six months of the seven years that the sometimes crippling symptoms plagued me.

I think I was the second person in Australia to have the surgery and the surgeon (in blunt surgical fashion) recommended I make out my will beforehand. So at the age of 23, I did.

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My scars from Arnold Chiari repair. Unveiled thanks to chemo!

The surgery was difficult but successful, but the long battle beforehand to find out the problem (and one misdiagnosis of Multiple Sclerosis along the way – another long story) altered me indelibly. It was my ‘facing my mortality’ situation that I guess cancer introduces to most people for the first time. For me, the ‘I might die here’ thought was faced, accepted, and addressed two decades ago. The ‘stepping off the precipice’ feeling – as you truly place your life in someone’s hands – has been experienced already. Something shifts inside you when you think those thoughts and take those steps. For me, it was (long-term) a good shift and those steps proved nothing short of miraculous. And they happened a long, long time ago. They are now simply part of who I am.

Another thing that prepared me for what is going on now is my career choice. I was (still sometimes am) a journalist and a photographer. I have seen STUFF. Stuff people don’t get to see, and often wouldn’t want to. I have mentally placed myself in the position of some of those I have met and interviewed along the way. I imagined ‘What if that was me?’ on innumerable occasions. How would I deal with that? What decisions would I make? What would I be prepared to do? I have been enabled to meet inspiring people in very difficult situations through this job, people who have made incredible choices, and had the benefit of seeing how that worked for them. Especially how they used the mental strength their challenges required.

Then, just over a decade later, our son was diagnosed with congenital heart conditions (described here) which required two heart surgeries before his first birthday. There IS no more frightening feeling (that I have experienced) than seeing your own child still and white and unconscious, with machines breathing for him, tubes and electrical wires hanging out everywhere and a massive stapled incision line down their chest in an ICU ward. Gut wrenching, helpless.

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Dash after his second heart surgery, in ICU.

And to see it all twice. Absolutely freaking terrifying. But we got through it, count our many blessings as we see him live normally now, and stockpiled our lessons.

So, you see, making decisions about MY treatment now for Stage 2 multifocal breast cancer, which I know I can have some control over, is not terrifying.

It’s confronting, sure, but it’s not terrifying. It will change me physically, but I am not helpless. And I understand how important calmness is – in my experience in those previous high-drama events, panic never really helped anything. It just paralyses you. This time, I got to choose my amazing medical team, gather my family to talk it over, reach out to others who had undergone similar surgeries, and step into it armed and ready. Armed with some serious life experience behind me. Experiences that didn’t always feel lucky at the time. But, in having them behind me now, with the lessons they taught me, I breathed, and took stock of those lessons, armed myself. And in doing so I became calm and understood my luck.

Do I think I am inspiring? Of course not. I am just fortunate to be able to bring into play the array of skills I have really had no choice but to acquire. And I have girded my loins to write about it a little – because I am an ex-photojournalist and that’s what I do. Do I love that someone might feel inspired reading about my story? Of course. If reading any of this helps one person through their own life challenge (whatever that may be) then that’s bloody awesome. It makes the sharing of it worthwhile.

So while I am grateful to my core for your kind, kind, overwhelming words, know the reason I share any of this story to not to evoke them. I share it for those who might walk this road, and whose arsenal hasn’t yet been looked at closely, has not been inspected, fully valued and prepared for use.

I will make four small recommendation for those facing something seriously life-changing:

  1. Don’t ever underestimate how strong you are. Strength comes from experience and attitude. If you must, you will. And this experience will arm you for whatever comes later.
  2. Make sure you choose your team. Medical and personal. Both are vital.
  3. Don’t listen to negative stories or negative people. Your mental health is paramount.  Take charge of it.
  4. LET other people lift you up if they offer.  It’s a hard thing to do sometimes. I am still learning to let this happen, but allowing people to assist helps them and it helps you. Win-win.
From this particular experience, I have learned just how incredible my friends and family really are.
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My sister Jeanie, and her girls – a special part of my support crew!

And how GOOD people in general are – especially (when given the chance) out here on the internet highway.  I don’t know that I truly saw before how lucky I am to have you all ready to rally. So, so lucky. It’s very humbling.

And I have also learned to wear scarves – not very adventurously but it’s actually great to make the effort. It makes me feel better and a lot less like a patient with a nude nut!
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A scarf and a smile – and a cheeky son in the background!

So, my village, that’s it. My navel-gazing health history confessions. Thanks for listening.

Back to your regularly scheduled bush beauty vistas very shortly, I promise! I know I need them… because photographing bush beauty is my special therapy. My crack. And among the strongest weapons in my arsenal.

Have you done a stocktake on your arsenal of experience and life lessons lately?

♥

* I am ever mindful that my experience with this disease and it’s treatments is unique – cancer and chemo affect everyone differently.  My story is just that. Everyone has their own. xx

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40 Comments

  • Gabi
    October 4, 2014 at 2:20 pm Reply

    Fabulous story bb. I admire you even more now. I get a lot of inspiration from you in many areas. Thanks fir you sharing. Xxxx

  • Florence
    October 4, 2014 at 2:33 pm Reply

    Thank you for being so brutally honest Amanda. We still think you are awesome (as are all people who are fighting these incredible battles). You are lucky with your family and your family is so lucky to have you. And we Australians (dutch) are so happy that you also belong a little wee bit to us, thanks to your blogs. And I for one am proud to belong to your village xxxxx

  • Jenny
    October 4, 2014 at 2:36 pm Reply

    We’ve known forever how fab you are… all of this, everything being thrown at you, and the way you are knocking it out of the f***ing park, just proves it.
    Big love to you my friend

  • Rochelle
    October 4, 2014 at 2:37 pm Reply

    We all have our battles. Your bravery in sharing yours has me clapping, cheering and admiring you from afar!!! Thank YOU 🙂

    • BB of Oz
      October 4, 2014 at 2:47 pm Reply

      Indeed we do Rochelle… that’s what I was trying to get at I think. We ALL have our battles. And they all matter. ♥

  • debby
    October 4, 2014 at 3:13 pm Reply

    Mikey sent me a magnet that I keep to this very day. “Courage is being scared to death but saddling up anyway.” It’s true. I’m six years out of it, and sometimes it doesn’t even seem real. You keep on riding and pretty soon you’ll be out of it.
    debby´s last blog post ..Special moment

    • BB of Oz
      October 4, 2014 at 3:22 pm Reply

      Yep. Saddled. Of course you (and Jools) were my go-to girls for all my questions early on. Thankyou for helping pave the way for me. ♥

  • Melinds
    October 4, 2014 at 5:18 pm Reply

    You ROCK the scarf!!!
    Love your words and message. I think you might make it a tickle easier for anyone about to walk a similar road. Perhapsa glimpse of what they may expect might help ease the fear of the unknown.
    Seriously… The scarf looks good

  • Merry-Anne
    October 4, 2014 at 8:00 pm Reply

    We all have our battles; you are awesome in the way you’ve grabbed at dealing with yours and helping others to cope as well. Dexter was your love that you passed along to us and we would be lost without him; through him we feel your strength.Keep well and hopefully we can meet up again one day soon when your latest challenges have been dealt with.

  • Gretchen in KS
    October 4, 2014 at 9:56 pm Reply

    Not so very long ago, hubby and I had to go talk to a counselor (long story, and I shouldn’t hijack your blog to tell it) but it ended with her responding to us, somewhat surprised, with, “Most people who have been through half of what you’ve been through, would probably be divorced or worse by now, but you two just seem to be stuck that much tighter together!” Yep, we’ve definitely taken stock of the troubles along the way, how we’ve dealt with them, and we really do subscribe to the idea that it makes us stronger.

    Keep on keepin’ on, you’re definitely doing this on your terms, and it certainly looks like the right way!

  • Trish
    October 4, 2014 at 10:13 pm Reply

    Thank you for sharing your story and I get what you mean. I feel uncomfortable with the inspiring word too.

    We don’t have a choice about cancer or health issues but we can choose our attitudes to it.

    All of us have an inner strength and face the difficulties with dignity and grace in our own way.

    #4 – May your spirit find what it needs to sustain you on last leg.
    Trish´s last blog post ..Win Ecococoon prize pack {$149.80}

    • BB of Oz
      October 5, 2014 at 5:57 am Reply

      Thanks Trish – I think a small party might be organised to celebrate #4. Of course, it might be a fresh-sqeezed juice kinda party, but a party nonetheless!
      🙂

  • Rebecca Ann Sinn
    October 5, 2014 at 2:04 am Reply

    Just thought you should know, we all know you haven’t posted about your fight to gain pats on the back or attagirls. Your public sharing of your experience and this very honest post have helped more than one of us to say, wow, I don’t have it so bad! It allowed me to go from a person who enjoyed your photos and blog to a person who feels like we are both part of a sisterhood and to feel personally connected to you. You have helped me by allowing me to share my story to try to boost you up. When you get a cancer diagnosis you have 2 choices – sit back and worry about dying or like me (I never really considered death) I just did what I had to to keep living and isn’t this all what we do on a daily basis – nothing inspiring there.
    You my dear are inspiring never the less! I feel glad to be getting to know you and to be a tiny part of your life story.

  • Ellie k
    October 5, 2014 at 10:52 am Reply

    I think we are all stronger then we know, women are made that way. Many prayers have been said for you and the family. Hang in there, one more chemotherapy and then you can relax a bit.

  • Kerri Toy
    October 7, 2014 at 9:07 am Reply

    Thanks BB my family has had a few ups and downs over the years firstly my brother passed around 16 years ago (suicide) then Mum got bowels cancer 12 months later, they say mainly due to stress from my brothers death. We have been going pretty well for a few years and then this last year my dad was diagnosed with lung cancer. He was a smoker and as mum stated you cant smoke for nearly 50 years and get away with it. Maybe like you we have been lucky and caught dads cancer early, I fear a later diagnosis and the outcome would have been VERY different. He has had a really aggressive treatment with 2 rounds of chemo but radiation treatment as well which was every day for a period of six weeks. We have finished and he has had a scan which has revealed swelling on his adrenal gland, but we have positive thoughts and a fantastic doctor he will have to have another round of chemo but once he has recovered more from the first rounds. I am thankful for my amazing family everyday and also that I chose to move back to mums and dads when I did, my husband has been a great support and has dealt with the move wonderfully, thankfully the property has two houses so atleast we have some of our own space to switch off. Dad has always stayed positive and has a great sense of humour thankfully. Thanks BB for sharing was good to read your side of treatment. All my love to you and yours take care and love every day without abandon. Kerri

  • Shelly Robertson
    October 7, 2014 at 10:35 am Reply

    Hello Amanda and thank you for your blog. I stumbled across it on FB several days ago and haven’t stopped reading and looking at your amazing photos. Your pictures have made me laugh and cry and invoked a very strong feeling of homesickness. I haven’t been home for 17 years but am determined to get there in the beginning of next year. You see we have a little bit in common, your little town is my hometown and I was in the same grade at school with your Mr I. Your photos have made me realise how much I miss the bush and can’t wait to show my daughter where I grew up. Say Gday to Mr I for me and I am sending positive thoughts for you and your family. Cheers Shelly

  • Melanie Evans
    November 7, 2014 at 9:33 am Reply

    Amanda – I just found you via Julie @ Another Chance Ranch (you left her a comment). I LOVE all that you say in this post and my heart goes out to you. I’ve been through something similar (bilateral mastectomy, lots of chemo, radiation etc.) and I especially love your 4 points at the end of your post. SO TRUE!!! You got a lot figured out so early in the game. One thing that is different for me is that I don’t have children. I can’t imagine how women who have children feel facing this diagnosis and treatment and recovery. You’ve already had other serious challenges too. I also felt overwhelmed by all the generosity and love and offers of help that came my way. I didn’t really know what to do with all that or how to become comfortable with it. I believe that all the love that came my way during my treatment was instrumental in my successful result. Gotta love the love!! Even strangers (God Bless them) would say something or hug me or in some way let me know that they were caring for me. That was a huge eye-opener for me. Those were the instances that would always make me cry. So heartwarming. I’m glad you have a team. So important and helpful. No need to go through any of this alone! Not listening to the negative stories….WHY oh WHY do people want to share their horror stories with someone who has to be pretty shocked and horrified and mystified by all they are getting ready to go through. I’ll never understand that. I had to cut a couple people off for the duration of my treatment and only let them back in when I felt I was strong enough to handle what they had to say. Do what YOU have to do. One other thing I learned and that I would add to your (EXCELLENT) 4 points is – don’t look/plan too far ahead. Take all of this in small bites. That continues to serve me. Bless your heart and I hope for you lots of love and a speedy and positive full recovery!! Hugs!

  • BB of Oz
    November 1, 2018 at 4:30 pm Reply

    Good heavens… trawling back through the archives to find some beautiful comments from you lot that I completely missed… thankyou!!! xxxx

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