I last sat down to write back in March of this year, and you could say there has been quite some time between ‘old friends’ (me and my keyboard). Some of you may be wondering where I have disappeared, while others may be keeping up-to-date with me on social media or watching my regular InstaStories over on Instagram (my apparent favourite social media obsession)!
In the last few months, a great deal has happened, and I feel it is time I owe you a brief update and a few insights in to what my writing hiatus has taught me.
Firstly, I took a very quick trip to Tokyo, Japan in April to be a guest speaker at The 9th Asia Regulatory Conference speaking on Patient Impact of Expedited Regulatory Review Processes, where a very personal account was delivered by me to 250 local and international guests. I was thrilled and honoured to be involved and to hear the collective of pharmaceuticals and regulatory bodies working on discussions and striving on strategies to best deliver expedient access of ‘new medicines’ within a quicker timeframe to patients. I walked away from the conference feeling abuzz with the knowledge that the patient impact was at the forefront of these strategies, but on the other hand as complete ‘novice’ to this field of global discussion, one thing stood out for me; a lack of common ‘clear’ language.
While the ‘language’ barrier I speak of might be as confusing as a foreigner communicating in a new land, it is not as simple as pinpointing the dialect that needs to be spoken. This is the problem, there is no common ‘regulatory dialect/language’, and there appears to be no set ‘consistent’ process globally to pass medicines through each regulatory body. Every country has its own systems for communicating, reviewing and approving new medicines. So much so, that each country has, as it seems, created their own ‘regulatory dialect’ built up over many decades and this is where it appears the streamlining and expedited approval processes for drug access worldwide falls short. This is where the potential for sistering/partnering (country-to-country) approvals, (from my deduction from attending a small portion of the conference) falls short. Much like any company runs its business, procedurally no two companies run in consistent alignment… there will always be a ‘term, a clause, or a condition’ that sets each company apart.
While this sounds like a straightforward assessment that could have an easy conclusion, it unfortunately is not, because on top of this seemingly basic administration issue, every country has differing emergent illness. While a drug may eventually make it through the approval system within a country (in our case the Therapeutic Goods Administration), it then faces it’s next hurdle – the in-depth scrutiny of a country’s reimbursable medical scheme (if they have any), in Australia’s case the Pharmaceutical Benefits Advisory Committee (to be made available for administering on the Pharmaceutical Benefits Scheme – where patients can access through Medicare at an affordable financial fee for the ‘everyday’ Australian).
Are you confused yet? If so, consider this on the global scale!
I am hopeful for better outcomes for ‘new medicine’ expedience however, I believe there is still much work (it seems), ahead.
Emma, and our mutual love of writing
On touch down from my flight from Tokyo to Brisbane, I learnt sadly of the early morning passing of my dear friend Emma by her beautiful mum, Tamra. Although I posted on social media of the huge loss at the time, it is only really now that I feel like I can begin to talk about losing my friend. I am very aware, like many that I am still grieving and in all honesty on public platforms such as this, I choose to ensure that my friends remain personal, but I can’t go without honouring Emma briefly here.
Emma Betts is well-known to every one of my readers, and for those who do not know Emma, you will no doubt have heard of her ‘openly communicative’ and very popular blog Dear Melanoma. Emma and I became hospital buddies at the height of my terminal illness, when I was in limbo waiting for a treatment lifeline! When that lifeline eventually came for me in the form of ‘compassionate access’ (immunotherapy) treatment, we found that our treatment times aligned and our friendship grew beyond the hospital waiting room, we connected (obviously!) over our disease and through a mutual desire and ambition to help many. We chatted often daily over messages, we laughed at our differences, and our similarities, we grotesquely mocked our situations (as only cancer patients know how) and we took comfort in knowing that each of us was there to chat to when we needed to talk to someone beyond our own families and immediate circles. Emma had that way of knowing how to become a massive part of your life, and she infiltrated with sass and humour!
For me, one of the hardest confrontations in our three years of friendship was the knowledge that Emma’s life with cancer varied so much from my own. And to lose her made my world once again feel lonely. Emma was my personal friend, someone I will uniquely treasure for every day that I am blessed to grace this earth. When Emma passed I needed to take time to grieve, I had to come to peace with a lot that I wished could have been different for her and a great deal of what I desired for myself. We often use to speak about how writing was our great healer, perhaps this is why I have taken so long to sit down, hands to keyboard and write. Perhaps this is that lasting thread I am holding on to of disbelief, the interconnection of what this process of writing meant to us both, but with all things in life, we must return to the things that bring us joy. And for us that connection has been with words.
Fulfilling a dream
Joy and adventure was what we (my husband and I) so desperately needed in the weeks following.
For a month-long stint, we took off on a dream… a dream holiday that is, that my husband planned methodically and after I pushed the SEND button on a beautiful illustration project I had been working on all year for a dear friend (watch this space!). We set off for Hawaii, New York and San Francisco to celebrate our second wedding anniversary and jam-packed so much in to what was a very fast paced trip!
Time to get serious about work
The holiday brought about a flood of freedom from my life at home and a love for returning to this creative side of me where we could walk aimlessly through galleries and O.D. on culture. I discovered while I was away this burning desire to continue to be an activist, in helping others, but through a more visual medium… (writing, illustration, art, collage, textiles), by really pursuing my passion for fair and sustainable fashion, (particularly vintage) and focusing on understanding the greater impacts our modern life has on our health, lifestyles and earth, you know… beyond our own doorsteps. For the first time in almost four years, I forgot about living with a cloud of melanoma/cancer floating over me and it helped me gain some much-needed rest from my life, and perspective.
I read an article recently about changing your career within your thirties and for much of this (3 – 4 year) period I have been that person, publicly dancing around what to do next throughout each emotional hurdle of living with cancer. The reality I faced when I gave up on my career is that I wasn’t meant to live this long. So far I have beaten the statistical odds (and grateful everyday)! For some patients who are now diagnosed with Advanced Stage Melanoma, many are being treated with ‘new medicines’ and living longer (thankfully!!!!), and a majority (obviously not all) are working all while undertaking these new wave of treatments. It’s truly incredible!!! This is where medical research is paving the way for a better future for all! Looking back, for me, continuing to work was not an option. The future at the time, was supremely uncertain, let alone thinking about the distraction of maintaining a career. Living with cancer and maintaining my health and self-care became much like a new job. Now, at 36, and having been (technically) out of paid work this whole time, I am in the position of asking myself where can my skills and life experience take me?
The time has come where I want to throw my hat into the ring of creativity and do it with motivated gusto, and of course receive reward. (A one-income family can only sustain itself for so long.) Do I have experience in this new chapter of my life that I want to create… not really, but before cancer, I never would have had the guts to stand up in front a hundreds of people and share my story, or achieve the feats I have had campaigning for other patients.
My focus in my mission online has always been about discovering what brings joy in life and ultimately to enrich your life somewhat with my findings that lead to empowering YOU to think beyond your immediate circumstance and beyond the metaphorical box you/we place ourselves in… to feel lighter, informed, grateful and open to possibilities.
So my writing hiatus has come to a close. Thank you for reading my learnings thus far.
What does the future hold?
Uncertainty, sure! But a need to step out from under The Naked Gardiner and show my capabilities, learn more, showcase my art, hell sell my art even and be a better representative of ME and my beliefs, beyond melanoma. I have been given this lifeline and I need to do I all I can with it. The most inspiring thing I can give you from my lessons of personal experience, is the permission to live beyond the limitations that hold you back… be it health, physical or environmental. Stand out from the shadows and do what lights you up… and most importantly stand up for what lights you up! Be curious, take action!
The Naked Gardiner no longer needs to be a public journal… it’s time for it, and more specifically for me, to grow and expand in to who I am now!
With love, light and bundles of gratitude, Kathy xx