Thursday, November 05, 2015

Reasons to be grateful

I'm writing on the sixth day of an unscheduled hospital stay, so clearly treatment has got off to a rocky start. I'll write more about that another time, but for this post I want to focus on some of the positive things that have captured my imagination since the diagnosis.

If you ever doubt that you're part of a community, tell the world you have cancer and see what response you get.

Since I shared my news I've been filled with gratitude for the people, institutions and science that have given me such hope for the future. It is hard not to appreciate the privilege of which you benefit when you experience so many things fall into place so effortlessly to support a person suddenly in need.

When I was diagnosed a few weeks ago I wasn't sent home to die in dignity. Instead I was given the expertise of world-class professionals, access to state-of-the-art medical science, fantastic offers of support from family, friends and colleagues and an overwhelming confidence that Things Will Be Okay.

With this in mind, I want to take this post to celebrate the amazing things that have become apparent to me since the diagnosis. I'm not the mawkish type, but some things are just worth sharing with the world.

My gratefulness starts with those closest to me, who did all they could to be by my side. To step along this uncertain path on my own would be very lonely, so to do so with other people makes it so much more bearable. The emotional support is profound, but so to is the practical support to get me to appointments, keep track of the medications, sort out paperwork, eat decent meals and prepare the house for the changes that come with being cytotoxic. Knowing these things are under control gives me the peace of mind to focus on returning to health.

Then there are the messages of support from people far and wide, once I shared word of my situation. One of the silver linings of the dark cloud of this damn experience is that I have reconnected with some people I haven't spoken to in years. Many people have offered their own personal experiences of cancer, with uplifting stories of spirited battles and successful recovery. Others have shared stories where ultimately the patient lost the struggle. Those stories are tougher to hear but still I am glad I did. I've never sought to shield myself from unpalatable truths and don't intend to start now.

My workplace has gone above and beyond its obligations, giving me the flexibility I need to focus on my health while also giving me the sense of purpose that comes with remaining connected to a larger project. While it is not a large organisation the great people that they are left me without any doubt that I would be looked after. The sense of security was a great weight off my mind. Not being a breadwinner for others has left me with one fewer thing to fear. But for those in my plight with other mouths to feed and no source of income but their own blood and sweat, the despair must be all the greater. I am thankful for the support that comes with being part of an organisation with the capacity to help one of their number.

The diagnosis triggered a sophisticated institutional response that was truly remarkable. Once I was diagnosed with cancer I was quickly connected with the Canberra Region Cancer Centre that was part of the hospital in which I sat. From there my hand has been held every step of the way with care and compassion. I have been given the information I need to understand my condition, the practical guidance to appreciate the changes this will mean for my life and the psychological support to unburden myself in a safe space. 

The small acts of kindness from volunteers at the Cancer Centre and beyond are invaluable - the tea and coffee cart circulating the floor of the clinic, complete with Milo; the foot massages for gnarly, weathered patients' feet; the financial support for patients and their families doing it tough. 

The army of doctors and other medicos fighting for me has been humbling. Once we knew just what we were facing the docs were ready with the prescription. My lymphoma is being treated with a regimen of drugs known as dose-adjusted R-EPOCH. Essentially it's a mix of drugs delivered intravenously for five days at a stretch - six to eight rounds at three-weekly intervals. All up, it will be about half a year. Alongside the drugs come a series of injections and oral meds to take the edge off the side-effects, which can be devastating.

For the individual patient this is all a shock. But for the oncology professional this is daily life. With incredible emotional resilience these doctors deal with the cases before them, dispensing advice, drugs and reassurance as required. A complex hierarchy means the big decisions are made by those with experience, often as part of a collaborative process, while those beneath them make the daily clinical decisions. For the patient like me on the frontline it delivers the best of all worlds - continuity of care coupled with elite expertise.

Over time I'll get to know the doctors and nurses and other medicos at the Cancer Centre who are guiding me through this. But my initial observation is that they are incredible people who bring together a great awareness of the complexities of treatment with great warmth for the individual in their care. The clinical decisions they are making often involve fine judgement calls and rely knowledge that comes with experience. But the delivery of care is friendly and personable, recognising the needs and frailties of the person before them. Few people embody these characteristics, and so to be in the care of so many of them is a great joy.

It is comforting knowing that I am treading a well-worn path, and that while my cancer may not be common, it is also not too rare. I am the beneficiary of those who came before me - the researchers, doctors and patients who have each taken us an increment closer to managing the disease. Many people are fixated on cancer breakthroughs but instead we should celebrate the small improvements - the better-targeted drug, the better-abated side-effect, the more convenient delivery mechanism. Collectively each of these make the life of a patient so much better.

And all this is available at almost no cost to me as a patient. Much of it is covered by Medicare and the Pharmaceutical Benefits Scheme, though the hospital stays are paid for by the private health insurance I have contributed to for about a decade. Given none of us being treated for cancer sought our plight, and few made lifestyle decisions that contributed to our circumstances, it seems fitting that care would be an extension of the welfare state as a form of social insurance. The idea that I should have equal treatment to my neighbour seems only fair (although clearly international equity is far more elusive.) The wisdom of policy-makers allowing all of us to access world-class care is worth celebrating. And while I'm at it, thanks taxpayers - I promise you I'll make it worth your while to get me healthy again.

Even in the early stages of my treatment not everything has gone my way (might be more on that later). But I have every reason to be thankful that I'm battling the disease at this time, in this place and with these people by my side. I am truly lucky.


5 comments:

Elisa said...

Beautifully written. Thank you for sharing your story. Am thinking of you. Xx

Martha Healy said...

Hi, Ari -

We have never met but I have heard so much about you over the years. I am Danielle King's mom and Danielle has spoken of you
many, many times. You kept a good eye on her whilst you both were in Europe and I know she was well-looked after while you were around - thank you so much!!!

Danielle has told me of this "episode" that has decided to come your way and I want to let you know that you are in our thoughts and prayers. It sounds like you are in the hands of experts and that things are moving expediently, which is great. All that knowledge and experience will serve you well!

Surrounding you with prayer and healing energy,
Martha Healy

Anonymous said...

Thinking of you buddy. Lots of love and strength to you and Amelia. Xxoo Greg and Jen

Anonymous said...

Lol IPad edit fail Mel, of course not Amelia.

Anonymous said...

Hi Ari, finally a reason I'm glad that I logged on Facebook for my bi-monthly catch up on the world, in a bitter sweet way of course. I think it is amazing that you are sharing your journey. Probably just in the way that you are used to being amazing, so maybe nothing special there (?). It is very touching to read and I hope that you are receiving our prayers to the universe for your safe passage and continued good spirits. Best wishes from Karthi, Otis and Colin.