I often hear myself saying to people that I feel like I have lost the last two years of my life, but after sitting back and jotting down all the things that I have experienced just in 2015 alone, I think the word ‘lost’ is a slight misinterpretation on my part. “Overwhelm of the mind” is probably more fitting!
This statement of mine, I think, stems from a place where I often feel like I am living a different life from many of my friends and family. After whiling away many hours of reading and researching the best explanation, I find it in the writings of Susan Sontag. Susan aptly calls it “the night side of life” which is best described as a parallel universe that opens up when a person moves from the kingdom of well into the world of the unwell. I often find that this statement rings true for me, where the worrier in me worries some more not only for myself but for those that are privileged to be in my circle (hahahaha!), it is a trait of the sensitive souls, the empaths – we appear to be this deep and often contemplative species, or we could just be “plain friggin’ crazy”! I also think that this “the night side of life” was born from a lot of time lost with my usual social comforts of a work environment and an abundance of time to think deeply on the greater meaning of life.
So let’s jump back into 2015 and let me ‘overwhelm the mind’ some more on all the things that took place in the year that was!
January saw me literally dying of heat, our air-conditioner was broken and my recently diagnosed Lymphoedema was causing much discomfort for little Naked old me! I had the privilege of hearing the beautiful Gabrielle Bernstein speak in Brisbane. Gabby is the force behind “Spirit Junkies” and the well-known “Miracles Now”, she is an author, a speaker, a Kundalini yoga instructor and a beautiful lightworker. You’ll often see me sporting my favourite Spriit Junkie hoodie throughout winter! I love her work and her message!
In alignment with my Foundation’s vision, Anthony and I began a personal mission to bring further attention to the decision makers of our fair country by writing to each and every Senator and Federal Member of Parliament on the urgency for fast-tracking Therapeutic Goods Administration (TGA) and Pharmaceutical Benefit Advisory Committee (PBAC) review processes for immunotherapy drug treatments (namely Keytruda) in Australia so that these therapies could become more financially available to patients. Our campaign saw me receive personal replies, along with having meaningful conversations on our plight with our Pollies. Melanoma affects many and believe me it truly does not discriminate and through these conversations it made me realise just how aware the Australian Government is on the need to focus on Australia’s National Cancer. But it also made me realise that there is never too much advocacy work when there is a message that needs to be heard.
Then all of a sudden February came roaring in with the cry of a baby with a head full of red hair. My sister Leanne and brother-in-law, Andrew and I (the ever diligent birthing partner and photographer) welcomed baby Jackson into the world. I will always feel an extra special closeness with this little man being the first person in the world to see his little head appear. My sister gave me a truly magical gift, the emotions of experiencing birth, even though it was not my own. And as the months go on and I get to see his little personality grow I am rewarded with these memories time-and-time again of how blessed I was to be part of this special moment! Only a year earlier on this very same day, I was told the news that I had progressed to a terminal prognosis. Silently as I took in the events of birth, I celebrated how precious life truly is!
My birthday followed three days after with a romantic rendezvous in the city and some serious pampering. As the month drew to a close I experienced a great sense of loss, as much of the world did, when I learnt of the passing of the beautiful Jess Ainscough. I had a deep respect for the work and the message that Jess believed in. From her passing I learned that your light never blows out but keeps shining bright and that the work you do to change the world shines on in those that believe and who live authentically in their purpose.
March saw me begin a new battle with cancer and its’ lasting effects when I was given my first compression bandage to wear to support my lymphoedema. It’s honestly something I still rebel against… and it’s visual confirmation that I have something wrong with me. Although I often defy it, I know that the bandage is there to support and benefit me, but in my rebellion I have also come to realise how important regular massage and acupuncture is in assisting me through my battles of daily management.
Once again Team Naked Gardiners’ rallied together and in a sea of grey and black we marched in the 2015 Melanoma March in Brisbane. Honoured, I was invited to speak on my experience with melanoma and the importance of medical research. The month of March was topped off with a trip to Canberra to attend the White Paper Launch: Improving Access to Cancer Medicines at Parliament House as a guest of Melanoma Patients Australia.
Like secret squirrels my sister and girlfriends organised a Surprise Hen’s Party for me in April. In a deep cave of wedding planning stress I was happy to leave traditions to frankly the ‘traditionalists’, but in all honesty I am so very grateful that they didn’t heed my ‘bouts of bridal despair’ and took the ‘old girl out’! And as luck would have it the ABC 7.30 Report worked in with my sister and came along for the party, hahaha! Thank god they weren’t there when we ran into a bunch of “Miami Vice” wannabes! My interview commemorated the TGA approval of Pembrolizumab (Keytruda) being accepted as the first line of treatment for Advanced Metastatic Melanoma Patients (without the BRAF mutation), but in order for this to be made financially accessible to patients in Australia it still needed to go through Pharmaceutical Benefits Scheme (PBS) approval. The drug was still financially out of reach of the average Australian. A wait was endured.
Wedding bells were hard to be heard amongst the massive downpour that hit South East Queensland on the day preceding our wedding causing flash flooding, sadly deaths and mass road closures; the sound of the downpour was likely muted out by the sea of tears that flowed from me. I can safely say this was not one of my prettiest of times. Thank you Myers Briggs for identifying that I am a control freak, a stress nut and an all round perfectionist! The white jacket is surely on standby!
But on 2 May Mother Nature shined her magic on us and cleared the skies to create the stage for our wedding day! It was without a doubt a supremely beautiful day celebrating our unique and unwavering love for each other and that our baby Winston was present looking on. I am so grateful that the man that stands by me, with me, is the most understanding and caring man there is, that he is my partner through thick and thin; it’s hard to believe that I love him each and every day more and more as we grow and evolve on our journey through life together!
Following the wedding we spent the most blissful week travelling through Tasmania on our honeymoon! I conquered a hike to Wineglass Bay and we romped around the State in a manner of foolhardiness and laughter! Together, we celebrated the stress of the wedding being over!
I took the months of June, July and August as time of recovery. To be honest, the wedding zapped me of everything. Day-to-day I managed to keep ticking and doing what I do but the mental stress of planning a wedding, the traditions of what a wedding means (e.g. future planning, children etc all these things that external people expect in a relationship that I am uncertain I will ever be able to provide) and all the build up to this massive milestone in life took a bit of a toll. I needed the time to recalibrate and get back on track. There were periods during this time that I 100% convinced myself that the cancer had spread to my brain. I was experiencing really bad headaches but nothing appeared in my scans, in fact, I was continually improving.
We got featured on the Nouba blog showcasing our wedding and our amazing vendors. You can read the feature here. We had visitors from overseas, celebrated wedding unions of beautiful friends and took mini breaks and with the good news of my health continuing to improve we decided that we wanted a house of our very own, to finally have a place where our little hound Winston could run freely to terrorise and patrol! It was our gift to him! In August, we found her and in September she would become our very own!
But before I take you on that journey, let me share with you the one of the biggest wins of the year (besides obviously the main personal events). On 1 September it was announced that Pembrolizumab (Keytruda) would be made available on the Australian PBS for Advanced Metastatic Melanoma patients as the first line of treatment (for those without the BRAF mutation). Quite frankly, for me this was a day of medical history in the making, where I believe that immunotherapy could really take off as the leader in cancer therapy treatments for our future. Not only is it a win for melanoma patients but ultimately it will be a win for many cancer patients of varying diseases going forward. For the patients that respond to Keytruda, the offer of life extension is truly one of the most precious gifts you can be granted. On this day, I was invited to speak to the staff of Merck Sharpe Dohme (MSD) in Sydney along with Hayley Andersen of MPA. It was the perfect opportunity for me as a patient to thank the organisation, the researchers and the team of oncologists who brought this drug to Australia. There is however, still one person that I sincerely wish to thank and that is the work of Ron Walker, who for me, particularly as one of the very first compassionate grounds access patients in Australia, was able to benefit from the work he did in campaigning for this drug to be made accessible through a compassionate program. A massive thank you to Ron Walker and the work done by Danielle and sadly the late Shane Raisher (even though I did not know him Shane will always be a big driver in my work), along with MSD, Melanoma Patients Australia, Melanoma Institute Australia and the many valuable and appreciated advocates in Australia, making Keytruda became one of the fastest drugs to be approved by our Australian PBS. For many this news may be bittersweet, and understandably so.
On the 15 September we received the keys to our new home! And since then I’ve seen my husband manifest into “Ant the Tool Man” with some serious nesting and renovations happening!!! I’m still waiting for Wilson to pop his head over the fence!
Somewhere through all the boxes and the piles of bubble wrap we managed to take a mini break to Byron Bay in October and attend the MPA Gala Dinner hosting our very own The Naked Gardiner Foundation table and sponsoring six new friends to join us. The 24th October came around and some chap by the name of NED decided to take up residency at the Pukallus-Gardiner (or Gardiner-Pukallus) abode! Seems he thinks we need a break from cancer and more than ever the words of “No Evidence of Disease” (NED) have never sounded sweeter. Of course with any news in the cancer department there are always the highs and the lows on the emotions stakes. Feelings of decisions to be made, uncertainty, fear, relief, excitement and guilt for others who haven’t been as fortunate all add to the constant roller coaster that goes hand-in-hand with this thing called Melanoma! By the end of the month I recouped my emotions and gained the empowerment to speak at the 2015 Brisbane Melanoma Forum in a panel discussion on a patient perspective of coping with a cancer diagnosis.
November threw the world into fear and uncertainty of a different kind with the terror attacks in Paris; as we all looked on with hearts broken we saw that resilience lives on in all of us in times of pain. We celebrated our darling fur-baby Winston’s second birthday and the joy he brings to each day and as December rolled in I opened myself up to new possibilities and a path of learning and guidance. We watched in pain and helplessness as our little Lion Man, my nephew Jackson was admitted to a long stay in hospital, as I too became very ill and with only two days before Christmas I managed to organise what I could in terms of presents and Christmas food for our family’s Christmas Day Lunch! Jackson was released from hospital the evening of Christmas bringing the best Christmas present we could all wish for, but watching a 10 month old experience his first Christmas in hospital was pretty devastating. Next year will be even better I am sure!
And as the year came to a close, Ant and I returned to our roots and celebrated the rise of the sun on New Year’s Day at Woodford Folk Festival!
Scrolling through my Facebook feed today I saw that Nouba listed their Top 10 Most Loved Weddings of 2015 (you can read it here) and as I kept reading, there we were, Ant and I listed as Number 3! And my dress by the amazing and gorgeous George Wu was listed in the Top 10 Dresses of 2015 (read here). What a shock and a big “yeeeeee-hahhhh” moment too! It made me realise how genuinely real and beautiful we made our wedding. That through all our days together, Ant and I will know that we made the day truly US. And that our amazing vendors are rewarded for the brilliant work they did, without them I would have melted in my sea of tears hahaahha!
Today, as I look back on all that happened in 2015 I really am blown away at all that we have achieved. And I am sure you are exhausted from reading… don’t worry I am sure there is a glass of wine or kombucha just around the corner.
We sat on our hands for a big part of a year and a half on The Naked Gardiner Foundation front as we patiently waited almost a year and half to go through the big administrative process that charities go through, but I look at this time as being needed, not only to focus on my own health but in order to reset the bigger-picture focus to truly benefit the patient like we have always set out to achieve.
I am truly excited to learn more not only about the path that I take but to keep digging deeper inside me and nurturing my path of inner healing. I often think that in order to teach you should always remain a student, but in order to help others you must also focus on healing yourself first so that you can truly be of benefit to those in need.
And most importantly I am thankful, thankful that I can breathe for another day and that there is a community of supporters behind me that have my back when I need them and they need me.
I may have believed in the “night side of life” but it has been the “naked side of life” that I have been living! 2016 will have me focusing on my path, digging deep and going gently, but above all else I will act with love, kindness and compassion and continue to Love. Accept. Believe. Nourish. Live!
With love, light and bundles of gratitude xx
Photos by Trent and Jessie Photographers and Kathy Gardiner