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

Bowel cancer awareness week

It's here, my (new) favourite week of the year. Me and the people in my support group have been doing media across the country (news, breakfast TV, lifestyle magazines). We are sort of addicted to talking about bowel cancer, the cheap and easy screening kits available from most pharmacies, and pointing out to people that you don't need to be old, overweight and male to get this cancer.

I featured in a story by Tracy Vo on Channel 9 News:

Bowel Cancer Australia are doing cool stuff this week, including leading the 'Join the bowel movement' campaign and flash mobs in Brisbane. I went to their recent awareness week media launch in Sydney and was blown away with the quality and creativity of their public engagement strategies.

My Holy Grail

Some people increase risk-taking behavior after cancer treatment and start living life fast and hard. Some go back to exactly how they lived before their diagnosis. Some go Zen, move to the country, grow their own veggies and make their own toilet paper.

How you live after cancer is important because there is some evidence to show that certain parameters (that you're able to control) can affect the chance of cancer coming back. Factors like exercise, nutrition and well being.

I began looking at my pre-diagnosis lifestyle in an attempt to find my Holy Grail. What factor was it that allowed a cancer to grow inside my 28 year old body? My thinking was that once I determined that factor, all I had to do was change that and everything would be okay, for ever.

I then realised that there was no single factor, cancer isn't about single factors. Cancer is about multiple factors and complicated genetics, immunology and physiology. Trying to find my Holy Grail was more about control: controlling my disease, controlling my future, and wanting to eventually die on my terms - not my cancer's.

Mainstream medicine has never blamed me for my cancer, alternative and complimentary medical thought often does. For example 'You didn't love yourself enough', 'You didn't eat enough citrus', or 'You led a stressful life'.

I don't think I gave myself cancer, I just think that what ever I was doing for those 28 years didn't prevent cancer. I don't have a known genetic disease and cancer is not common in my family. If my cancer came from exposure to a carcinogen then that is fine, but my body systems still failed to catch and remove the cancer and so may need some help in that department in the future.

One of the challenges for me is that I was reasonably 'healthy' before cancer

I was an extremely low consumer of meat (I averaged around 2-3 serves of animal a month). I drank between 1 and 3 liters of green tea per day. I ate nuts and seeds and wholemeal and wholegrain products. I cycled or ran most days and my BMI was perfect. I was doing a job that I loved and was passionate about.

But not everything I did was healthy

For several years before my cancer and I drank (like most of other Australians). I had a massive sweet tooth. Running my own business became a stressful experience. I went through a period of not valuing relationships with friends and lovers. I didn't spend time with myself, or just hang out with Ben.

I don't think going to Beijing mega clubs and drinking excessive amounts gives everyone cancer, it just didn't work for me. I had 28 years of living one way, and I got cancer. It's rather straight forward.

I don't need Dr Phil to stare me down and ask "How'd that work for you?" because I know the answer. It didn't.

My next article will detail what I have changed about my lifestyle and diet and why I think these changes are healthy ones. 

Damocles and my sword

I spent 28 years not thinking about cancer. Well, I thought about it in the sense that I didn't go out of my way to do things that cause cancer, like smoking and sun baking, but cancer wasn't really on my mind.

Then cancer became something I thought about every day. And to be honest, it still is.

Several decades ago cancer was equal to death, and doctors were so busy trying to stop people from dying they didn't have time to think about what happened to the lucky few that made it. As more and more people started surviving cancer, medical professionals realised that surviving cancer can result in psychological change.

A common change in people after they finish treatment is an increase in anxiety. You read that correctly, often people experience an increase in anxiety after they have finished treatment and have 'no evidence of disease'.

Uncertainty + worry = anxiety

The increase in anxiety arises because of persistent worry that the cancer will come back. Exactly if, when and how a cancer comes back is uncertain. And therefore, how long you will survive the cancer is also uncertain.

The irony is that it's the very act of surviving that creates the worry about not surviving. In the middle of treatment we just focus on treatment, cycle after cycle, surgery after surgery, day after day. Getting rid of the cancer (or the closest you can get to that state) is the only goal.

And then you reach the goal and start to wonder 'What's next?'

Surviving is what comes next. But it's different to the surviving I was doing quite happily before my cancer was found. This survival feels like it is taking place on 'borrowed time'. Exactly how much time will be borrowed depends on whether my cancer will come back. And this is the last unknown.

The uncertainty felt by cancer survivors is called Damocles Syndrome. Damocles was a courtier under the ancient Greek king Dionysius II of Syracuse in the fourth century BC. Damocles was in the habit of pointing out how fortunate the king was being surrounded by generous people heaping praise on him. The king offered Damocles the chance to swap places but the king had a sword suspended above the throne, hung by a single hair. After some time Damocles noticed the sword and this impending and constant threat was enough to make him return to his place among the court.

It's called Damocles Syndrome in cancer survivors because of the constant sense of threat that some people feel at different times during their survivorship. I guess the other parallel is that something that we thought was without worry (being king, or surviving) isn't all that it seems (because of the hanging sword).

Ways the Greek legend is not like surviving cancer

1. A better legend would be one that has a mysterious black box above the throne that possibly contained a hanging sword. Damocles could see the threat; I don't know if there is a sword suspended by a single hair above me, or in cancer terms, a rogue cell hiding out somewhere in my body. I don't know this because medical imaging isn't good enough to detect those cells.

2. Damocles could choose to return to his place away from the sword. I don't have a choice of going back, but that is an academic argument anyway because no one would choose active cancer treatment over a disease-free state.