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

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.

sur·viv·al

[ser-vahy-vuhl]

noun

1. the act or fact of surviving, especially under adverse or unusual circumstances.

2. a person or thing that survives or endures, especially an ancient custom, observance, belief, or the like.

Defining survival appears straightforward, but within cancer circles it isn't. The days are gone when your medical professional declares 'You're cured!'. Instead, careful language filled with scientific precautionary and cautionary thinking is used. Terms like 'no evidence of disease' and 'long-term remission' now dominate.

Let me say up front that I am not complaining. The fact I am even thinking about this aspect of cancer means my treatments did what they were supposed to do and for now I have no evidence of disease.

In cancer circles I get to say: I'm n-e-d

I like the new vocab because while being realistic and pragmatic it still allows for bouts of spontaneous celebratory dancing. I am technically, at this stage and time, and according to standard medical imagery and oncological understanding, cancer-free. I may not stay that way (indeed, 50% of colorectal cancers reoccur), but I am that way now and that is enough to ride the optimism bike as far as the eye can see.

But have I survived?

Not according to medical researchers, because they measure cancer survival as being alive five years and ten years post-diagnosis. This is the benchmark and the universal metric used in clinical trials and in hospital and governmental reporting.

It's all about how you play the game

Maybe, according to the Cancer Council, because they define a survivor as someone who has finished 'active' cancer treatment. Does my 11 months of further anticoagulation therapy count? And what about the fact I am still living with a 'temporary' ileostomy?

Yes, according to the National Centre for Cancer Survivorship (USA) that states that you are a survivor from the date of your diagnosis.

Process or end result?

The survival question really is one of process versus end result.

My thinking is that working from the date of diagnosis is the most practical. But what about the five to ten years (the time it takes for a polyp in the colon to become cancer) that I was living with cancer before my diagnosis?

I like the idea of acknowledging the process of living and surviving with cancer, and not the final outcome. The date of diagnosis is really just the date that I became aware of my cancer. My body knew long before I did - It had been fully engaged in attacking the tumour and was surviving.

Actually, my body was enduring under a large tumour load, on top of alcohol consumption, large amounts of passive smoking (people can still smoke nearly everywhere in China), and eating fast food and chocolate.

Someone that died three months after their diagnosis survived three months (and more) in my opinion. Someone that died seven years after a second bout of lung cancer survived seven years (and more). Someone having chemotherapy is surviving. And so is someone cancer-free after 15 years.

A focus on the process seems consistent with talk of a 'cancer journey' anyway. There is no need to get hung up on the end point, whether that is death or life, because cancer is a process and so is healing from and living with it.

#5 on the Cancer Charts

Clots and cancer

I have a new life-threatening condition, and it's not cancer. My new condition was picked up in a CT scan done at the end of chemotherapy. This CT was done to re-stage my cancer, but what it actually did was save my life.

I have several blood clots, in the lungs. It turns out that cancer is an independent risk factor for developing blood clots. This means that cancer alone predisposes someone to developing a clot. Cancer treatments like surgery and chemotherapy also increase the chances that someone will develop a clot.

DVT + PE = VTE

Deep vein thrombosis (DVT) is the name given to a clot that forms in veins in the legs or pelvis. A pulmonay embolism (PE) is a clot in the lungs. Often, clots that form in the legs or pelvis (DVT) travel to the lungs (PE) and taken together these conditions are called venous thromboembolism, or VTE.

Where my clots formed is unknown, but four are now stuck in a mid-section of the left lung. I have no symptoms (for hypochondriacs already asking Dr Google if they have a PE, symptoms would include chest pain, shortness of breath or a fluttering heart beat) and if not for the CT I would be none the wiser (radiologists are some of the unsung heroes of cancer treatment and care).

What is known is that people with cancer are 4 times more likely to develop a blood clot than other people; 20 % of VTEs occur in people with cancer; and developing VTE is associated with a poorer prognosis (depending on the type of cancer).

Clots are more common after abdominal surgery (tick) and neurosurgery, periods of immobilization (tick), and after certain chemotherapeutics such as 5FU (tick). Clots are also more common in overweight (cross) or older people (cross) and people with brain, pancreatic, stomach, ovarian or blood cancers (all crosses). The propensity to develop clots can also be genetic (unknown, testing to follow).

Clotting curve ball

People with cancer get used to curve balls. They come at us from unexpected directions and have a way of sneaking up on us with speed. I'm adding 'pulmonary embolism' to my List of Cancer Curve Balls. It occupies position 4 in my cancer chronology. 

List of Cancer Curve Balls

Number 1: having a floppy sigmoid

Number 2: finding out the tumour was bigger than expected and trying to eat other tissues

Number 3: springing a leak in my newly resected colon

Number 4: four blood clots near my lungs

Crushing the clot

I am on a high dose of heparin (a blood thinner) for the next 12 months. I have to inject this myself into my thighs or abdomen. This particular anticoagulant (blood thinner) has a reputation for coming in blunt-ish needles and for stinging like hell and causing bruising. I can confirm all three.

The fact I can now inject myself, knowingly inflict pain and cause impressive bruises all adds to my street cred. These new traits are up there with my scars, tattoos and the fact I can poo in any position (courtesy of the bag). 

Me and my immunity

Macrophages, killer T cells, memory cells, helper cells, natural killer cells, phagocytes, antigens, B cells, neutrophils. The spleen, thymus, lymphatic system and hormones.

This is the Immune Toolbox. This set of tools didn't really work for me before, but it's the only set I have and these are the tools I now need to trust, nourish and cherish.

These tools stands between me and more cancer. It is what will capture and terminate any cancerous cells and microtumours that pop up in the future.

Radiation, chemotherapy, surgery and more chemotherapy were tough; some people even call them toxic (I don't).

These treatments can be difficult to endure, but for me they were an excellent safety net: stuff was being done. Ionizing radiation was hurting the tumour, chemical soups flowed through my body 'cleaning' it up, someone was cutting out cancerous tissue, another was examining lymph nodes for travelling disease. It was all hands on deck and my Immune Toolbox could take a breather.

Not now though. Rest over. All my systems are go. Action!

The immune system is complex and how it is affected by what we eat, drink, do and think is an emerging field called Psychoneuroimmunology. Obviously something wasn't right with my Immune Toolbox before because I don't have a known genetic disorder, I exercised, was a very low meat eater and didn't smoke (all known risk factors for colorectal cancer).

And recently a leading UK cancer organisation released a study showing that at least 40% of cancers result from lifestyle factors, factors that can be controlled.

So what am I going to do differently now that treatment is over? I'm not sure.Treatment only finished 12 days ago, and the chemotherapeutics would have only just been metabolized.

I'm still working it out. Watch this space.