Fear and alternative medicine

Soon after my cancer diagnosis I told my surgeon that I was uncomfortable about the upcoming surgery and did not want him to remove all my contaminated organs.
 
In a small, crowded clinical room I pleaded: “Can’t you just take the colon, or rectum and leave my bladder and reproductive organs alone? Can’t I just delay the surgery for now and spend the next six months working out, eating healthy, and meditating?”

I was diagnosed with stage three bowel cancer in 2011 at the age of 28. At the time I was terrified. I was facing chemo, radiation, and major surgery that could have left me, if I survived, with permanent bags hanging off my body and erectile dysfunction.

And so I launched head first into exploring other therapies. They gave me a sense of power over my body – like I could have an effect on the outcome of my cancer, and it wasn't in the hands of others alone.

My doctors didn't agree. At the meeting they warned me, unequivocally, that they don’t usually see people who have tried alternative methods – as promoted by the now disgraced Belle Gibson – “until they are crippled by pain and it’s too late to save them”.
 
With the recent passing of alternative therapy ‘Warrior’ Jessica Ainscough after a 7 year-long battle with epithelioid sarcoma, a rare cancer affecting the hands and arms, and the collapse of Gibson’s fake cancer healing empire, alternative medicines have been pushed into the public eye.

Exactly how many people turn down conventional treatments for alternative ones is unknown because hospitals don’t measure it. Hard data is also lacking because studies tend to group complementary and alternative therapies together – even though they represent very different attitudes towards mainstream medicine.

Most people believe that alternative therapies are safe, despite the fact that they aren’t subjected to rigorous analysis. The risks of alternative medicines are rarely communicated by those selling them, especially the biggest risk of all – missing that small window of opportunity to hit a cancer with the best treatment possible, usually aggressive chemo, radiation or surgery.

Wellness therapies don't work alone. But maybe we should also preach some patience and understanding to those who turn to them so we can support them to make decisions that ensure the best chance of surviving. I am a scientist yet – four years ago, faced with a life-threatening illness – I suddenly considered abandoning science. Why?

Quite simply, I was very scared.

In the end I followed my doctor’s treatment plan – but I also kept meditating, drinking apple cider vinegar, went vegan, and began to see complementary healers. Faced with fear and frustration, these more gentle treatments seemed a universe away from the sickness and pain of chemo and surgery. They gave me hope.
 
Why were people so duped by Belle Gibson’s lie? Why was Jessica Ainscough (who I met at a cancer meeting and was lovely) seen as so brave and all knowing? Both are a reminder that people are complicated, emotional creatures, especially in times of stress and fear. They want a bit of magic and a few miracles.

I started my training this year to be a doctor. And one of the most important lessons we learn as doctors is that people need to be emotionally propped up through major medical decisions. Support during the decision-making process, when dread and anxiety are elevated, is fundamental.

Gibson and Ainscough sold therapies that aren’t proven – but remember people believed in them because they were afraid. I know because I've been there and danced with the dangerous idea of abandoning medicine, at a time when I needed it most.

Next steps

I start medical school next week and my stethoscope arrived two Tuesdays ago. I bought it online.

I never thought that one day I would end up browsing online stethoscope stores. It didn't cross my mind, for example, while I was lying motionless under beams of radiation. And I certainly wasn't thinking about it while watching nurses change my bags of chemotherapy solution.

Was it before a particular surgery? Or after? Nah, I was definitely focused on other things then, like trying to eat without throwing up.

It’s a shame I can’t remember, it would be nice to have an ‘Ah-Ha’ point in time – the exact moment my motivation and values shifted and I decided I wanted a career in medicine.

Plenty of cancer survivors have gone into medicine or medical research. And plenty of doctors and health professionals have developed cancer. What I’m doing isn't anything new.

But I thought I would mention it here because this blog is about one person’s cancer journey, and that journey means I am now crossing the line between patient and doctor...and I am doing that because of cancer.

Next week I begin a new journey and dive head first into the system that saved me.

Three years

The worst thing about surviving cancer is not the scars, fuzzy fingers and feet, violent colon or fear that cancer will return. No, the worst thing about surviving cancer is knowing people who don't.

Since being diagnosed with cancer I have played a role in the cancer community. It's my way of giving back and I felt the pull early on. There's an important trade off though - being involved and around people with cancer means I meet and chat with people that may die from it (and I'm sure this crosses their minds too). Soon after treatment finished, some people even advised me to put some distance between myself and others with cancer. Their reasons were valid, they were worried about me and how I would respond, longer-term, to people dying from my disease.

I'm intimately aware that cancer kills, and each time I lose someone it's a reminder of how lucky I am (the further from treatment I get the more I surrender to the role of luck in surviving cancer). Each death is a reminder, a healthy reminder, that I am alive. Each passing fills me with gratitude that I knew that person and that I am alive to know more people (both with and without cancer). It's that simple.

That's not to say that each death isn't a sledgehammer of sadness. I cry when I learn about people I know that die from cancer. Each death forces me to (re)dwell on my own experience, survival and cancer journey. Why them? Why me? Why not me? I cry for them, me and everything that is crap about cancer. Questions and tears, off I go, round and round...

Like when the marine biologist in her late 20s passed away. Or the 30-something father of three who built a pizza oven for his kids in the backyard. Or the science grad in his early 20s who fit in one last trip overseas with his partner. Or the wine maker who blew some of her life insurance payout on a shopping spree in Singapore. Or the social worker searching for her father. Or the 20-something creative that touched a thousand lives and then some, but couldn't keep her own.

I cry for them all; I think that's healthy. And sometime later I smile. I smile because they were all awesome people and would be smiling too if they were here. I also smile because I'm alive, and that means I can still meet, learn from, and laugh with, even more people with cancer.

Two years

There is only one thing I like more than sipping champagne, and that’s sipping champagne while wearing a bow tie.

But a couple of weeks ago I found something I like better than that: sipping champagne while wearing a bow tie, on a stage in front of 500 people (half of whom also had bow ties on) and talking, about myself.

The occasion was the All Ribbons Ball – a charity gala organised by the Young Garvan Foundation to raise funds for medical research at the Garvan Institute.

That’s enough about things that aren't me, back to me.

I was the guest speaker, and my job was simple: communicate the need for medical research. Of course I jumped at the opportunity. First, because I like science; second, because I survived stage 3 colorectal cancer; third, medical research saved my life; and forth, I don’t mind talking about one, two and three.

And while I don’t believe in fate, I do enjoy basking in the awe that accompanies coincidence. And what a coincidence!? Exactly two years before my speech at the All Ribbons Ball, to the night, I was lying in hospital and getting ready for my first surgery.

The surgery would be massive, as indicated by the felt pen marks covering my abdomen telling the surgeon where to put my new bladder and bum.

I was nervous then, and I was nervous two years later, under different spotlights and advocating for more medical research.

But the nerves faded quickly. You could have heard a pin drop. I had the crowd in the palm of my hand (as speakers know, this is a rare and elegant thing) and I had a ball (pun intended).

I finished. The room stood. Neurotransmitters flooded the reward centre in my brain. And I left the stage, embraced my family and friends, and had another sip of champagne.

Everyone was smiling. My Mum cried. And the whole time I thought of people my age, with my cancer, that I’d met but would never see again.

Damn, survival is bittersweet.

(C) Naomi Hamilton

Death by Facebook

Having cancer a couple of decades ago, I can only assume, must have been a private affair. Not so today. Cancer is everywhere; it has infiltrated our lives by touching many of our elderly, and increasingly, our young and fit. It now permeates our supermarkets, where items with pink packaging promise a better future, and our magazines, where celebrities have photo shoots under headlines that read ‘I’ll beat this in 6 weeks!’.

And increasingly, Facebook and the Internet are being used to communicate cancer and share the ways it changes our bodies and brains. The digital age allows cancer to leave the hospital and the confines of the beds in which we lay healing. The image of chemotherapeutics entering our veins is no longer the domain of the privileged few that choose to sit by our sides while we bathe in these medicines – anyone and everyone can update their status, pin a picture or write a blog entry and tell whomever is listening what cancer is like.

I’m of a generation that uses social media – that odd extension of human sociality that promises hyper-connectedness, but most likely only strengthens the connection between users, touch screens and keyboards. I used Facebook during cancer as a way to direct people to this blog, as this blog is more about my cancer, and less about me; it is where Ben with cancer lives.

Other people do it differently

Some people fully merge their e-self with their cancer self, and this is commonly done on Facebook.

Through Facebook I have been able to connect with people my age, who have the same cancer as me, and get what it’s like to be me. It is an invaluable tool for people thousands of kilometres apart to meet and discuss all that cancer is and is not. Part way into my cancer journey, some of these people I’d met started dying and it struck me that Facebook means I can be privy to it all, right up until the last breath.

I’ve witnessed different ways of dying on Facebook

Some people log off early in their final struggle. The posts and photos quietly dry up, just as their motivation, and the relative importance of Facebook to their lives, must.

But some people communicate until very close to the very end. Posts of pain and pain relief, damaged tissues, loss of appetite, people that have let them down and people that have surprised them, what matters most and what matters least – it’s all there for people to see, comment on and Like.

A family member or close friend eventually takes over the account and posts on the cancer patient’s behalf, and your heart sinks because the shift in ownership reflects the larger shift in life force. And then the page becomes about other people and their grief, and then sometimes things get complicated and distorted when loved ones want to close the account and meet resistance from the masses.

I’m confused by Facebook and dying

I'm most confused about how these two forces – one modern, the other ancient – are merging in this age of ours. It’s probably too early to tell anyway.

It is interesting though, especially when support services for young adults with cancer aren't as prevalent as they are for other groups with cancer. And those that are available for us make no mention of what it may be like to watch your friends, and cancer colleagues, die online.