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.

Recolonnected

Two months ago the section of small intestine poking out of my abdomen was pushed back inside and sealed in a way that meant that it was game time for my colon.

Even after explaining to people exactly what a stoma is and how the surgery to remove my tumour unfolded, and even after drawing diagrams on napkins and myself, I have the feeling that people still don't understand exactly what went on. 

When living with a loop ileostomy, as I did, nothing is turned off or stopped - things are just by-passed. The diagram to the right is one that best shows the surgical outcome. As you can see, everything is still connected and working. This cut section of small intestine is pulled up through my abdomen and sutured in place. As intestinal contents, or poo, move through my small intestine they reach the hole and are collected by a bag stuck on my belly and over the hole.

This meant that waste could not continue on to the colon, which needed a break after the operation to remove my greedy tumour.

The loop ileostomy was able to be reversed after my leak healed, chemotherapy finished, and the blood clots in my lungs dissolved. And this happened two months ago.

Using your bot bot again after 9 months of not using it is a very interesting experience, for several reasons:

1. My colon is a lot shorter than it was the last time I needed it
2. I no longer have a sigmoid or rectum, meaning I've lost a couple sets of traffic lights telling poo when to stop or slow down
3. I now have a new pouch near my anus called a J pouch - that acts like a reservoir, or holding tank
4. I had extensive radiation and chemotherapy to the area, meaning the tissues will be affected for years
5. The muscles around my colon got lazy

In day to day terms, this means:

1. I go to the toilet several times a day
2. Often there is disagreement between me and my colon about when it should empty (the colon tends to win)
3. 'Gas' is my new friend
4. I do pelvic floor and clenching exercises several times a day to build up strength
5. I'm extremely sensitive to chili, brussel sprouts and sugar
6. I often need to wear extra protection

But as I approach 1 year since my tumour was removed, I'm not unhappy with this list. As someone in an online support group once told me 'at least you're still here to feel these things'.

Treatment pie

I'm fairly open about my cancer and its treatment, but one aspect of my treatment that I have tended to keep to myself is the nutritional and psychological changes I have made as a result of getting cancer. I've hinted a few times at providing a list of 'What to do' but I am uncomfortable doing this.

The aim of this blog

I mainly use this blog to communicate the science of colorectal cancer and treatment (despite the fact that posts related to the heart side of things attract the highest number of views). This is the void in cancer communication that I am hoping to fill.

Why patients do the things we do

I'm into evidence-based treatments and the use of science as a tool for knowing things. Cancer hasn't changed this, but having stage three bowel cancer did force me to look at a wider range of therapies than I had considered in the past. And I deviated from my normal decision-making framework and adopted therapies that don't lend themselves to being evaluated clinically. I called these choices Leaps of Faith, in the sense that it was my faith in the treatment that mattered. This faith stemmed from my need to tackle many different parts of my life simultaneously. It was me vs my tumour, and the stakes were high.

No two pies are the same

Given the personal and individual nature of dealing with cancer, I have never dumped my therapeutic choices onto others. I have a concept of a cancer treatment pie - where each slice is a different therapy, way of thinking or tool. Each person needs to bake their own pie and for this reason I'm not going to use the blog to promote the lifestyle choices or therapies that made up my pie.

What I can say is that there is very good, and generalizable, evidence that the following increase your risk of colorectal cancer (above and beyond age that is):

• Smoking
• Drinking alcohol
• Processed meats or a diet high in meat
• A diet high in animal fats

For more information see what Bowel Cancer Australia has to say about preventing colorectal cancer.

Had surgery? Be heard.

I offered to help recruit research participants for a new study being done into the information needs of people having surgery for colorectal cancer.

This project aims to explore patients’ experience of a subtotal or segmental colorectal cancer resection, and to identify their information needs. The project will study the longer term outcomes of the two different surgical options. If a need is identified, patient information leaflets will be developed from the findings for use in clinic.

This research project will focus on what patients have to say about the experience and outcomes of surgery in their own words. We will cover topics such as what you knew about colorectal cancer before you were diagnosed, what you knew about the surgery before you had it, your experience since having surgery, and what you would most liked to have known prior to the surgery, and how you would have liked to receive this information.

You can choose whether you would prefer to have an individual interview at a time and place that is convenient to you, or be part of a focus group discussion with 8-12 people who have undergone a similar surgery to you. 

If you want to take part please contact Emma Steel on  (03) 8344 0768 or emma.steel@unimelb.edu.au