November 28, 2011

Lists

A good barometer for my overall level of well-being is my attitude towards post-it notes. As I have written here before, I went off to-do lists and post-its and spreadsheets and planning soon after being diagnosed with bot bot cancer.

This was quite a surprise (to me especially) because I love lists. Lists are so structured and clear and organised. I learnt to use them because I don't have a particularly good memory for general stuff (but I can however tell you the Latin name given to the common wombat).

Post-it notes are back. I don't remember when it happened, but all of a sudden I found myself writing things down that I needed to remember to do and that weren't related to cancer. Buy soy milk. Email Kim. Water parsley. Call Nancy back.

People with cancer know that things drop off general to-do lists when in the throes of trying to stay alive. Staying alive is, after all, the biggest to-do. I haven't wanted to put anything else on my list since January.

But now I am nearing the end of treatment and have started to appreciate small things again: things that I would have previously thought were a waste of my precious time, things that 'didn't matter'.

Having post-it notes back in my life is nice. Those little coloured squares are a sign that I am, once again, thinking of a world with me in it.

November 14, 2011

Fame

The run is over, the money is banked.

Thanks again to everyone that supported me financially and otherwise in the lead up to the race and on the day.

Your support of The Warwick Foundation meant the total raised was $5500, the 7th highest amount for an individual (12000 people participated).

The Warwick Foundation is a small organisation with a big mandate and each dollar donated to them goes a long way.

I also achieved my two minutes of fame when ran a piece on me, the run and the Foundation.

video

October 28, 2011

My turn

Cassie dropped her pants for me in Brisbane. Brock ran a personal best over 10 km for me in Ottawa. Susan abstained from alcohol for a month for me in Beijing. Kim cycled 55 km for me in Sydney.

I think it's my turn

The City2Sea is a 14 km run in Melbourne and takes place mid-November.

I'm going to be raising money for The Warwick Foundation - the first and largest Australian organisation supporting 18 to 40 year olds with cancer.

The race will take place after three days of Cycle 5 of my chemotherapy. This is good because it means I will be high on hormones, but bad because I will probably be tired as hell.

I'll be running with my PICC line and bum bag (of the medical apparatus kind) and so won't be going for a PB; it's the thought and effort that counts after all.

You can sponsor me here.

No pressure

I only have Stage 3 cancer AND will be running 14 km for CHARITY in the middle of CHEMOTHERAPY, 14 weeks AFTER surgery that removed 15% of my body weight and sent my resting heart rate UP 30 beats per minute.



October 19, 2011

Roid rage

Cancer has given me tattoos and a scar that looks like I lost an encounter with a Samurai, or maybe a shark, or maybe a samurai-wielding shark. Macho factors for sure.

But the only way to really become an Ultimate Macho Man is to work at it from the inside, and that means 'roids.

By NinjaMouf (devianart.com)
Even the name of the steroid I take sounds tough.

Dex: 100% MAN made

Dexamethasone is a synthetic steroid designed to mimic a steroid our bodies make called cortisol. Cortisol is a steroid released by the adrenal glands perched on top of the kidneys. Cortisol is helpful during stressful situations (like a battle with a samurai-wielding shark) because it contributes to our 'flight or fight' response.

Cortisol and Dex are glucocorticoids, which means they basically affect the way glucose is used by the cells in your body. During times of immediate stress (shark with sword) your body needs quick access to plenty of energy and cortisol makes this happen. Cortisol also minimises our perception of pain, boosts the immune system and acts as an anti-inflammatory agent.

Cortisol x 80 = Dex

Chemists didn't muck around when they made Dex because it is up to 80 times more powerful than cortisol. Dex also sticks around in the body longer than cortisol: its half life (the amount of time it takes to lose half of its ability to affect the body) is up to 54 hours (it's 8 hours for cortisol).

Dex is commonly used in cancer treatments to control nausea, but no one is really sure how it works. One of the fun things about having cancer is coming across treatments that work but no one knows why (there are several examples of this).

Unlike other anti-nausea drugs that directly block serotonin receptors and the main road leading to the Vomit Centre, Dex works another way; they're just not sure how, or why, or where.

Some things are known though: side effects

The list is long, but here are the most interesting ones:

  • Increased appetite and weight gain (note: not muscle gain)
  • Convulsions
  • Insomnia
  • Anxiety
  • Personality changes, depression
  • Irritability, euphoria, mania

I now put on up to 1 kg a week of body mass, I'm writing this article at 3:40 am, I got anxious today about something small, I breakout in a sprint when cycling for no reason except that I can, and when my thoughts start racing, they're matched only by my racing heartbeat.

But I haven't vomited once.

October 7, 2011

Chemo = Vom

Looking at or smelling chemotherapy drugs don't make you feel sick; they have to be inside the body to cause nausea and vomiting. And this doesn't involve the stomach (well, not at first, the vomiting bit is all stomach), it involves the small intestine.

Because cells lining the small intestine are particularly sensitive to chemotherapy drugs.

When these cells are damaged by chemotherapy drugs, they release the neurotransmitter serotonin. The name serotonin is loaded with meanings related to happiness in people and bullying in male animals, but around 90% of serotonin in the human body is found in cells lining the gut, where it has the mundane job of regulating how fast the digestive system pushes food along.

Three roads lead to vomit town.

The main road

Serotonin released by intestinal cells damaged by chemotherapy drugs is detected by vagal nerves hanging out near these cells. Vagal nerves send information (WARNING: Gut has been poisoned) to the medulla oblogata, the region of the brain where the Vomiting Centre is located. Then you feel sick and vomit.

The small side road

Serotonin released by upset intestinal cells enters the blood stream, chemoreceptor trigger zones detect it and alert the Vomiting Centre that something isn't right (WARNING: High levels of serotonin in blood stream mean gut is poisoned). Then you feel sick and vomit.

The smaller side road

The chemo itself is directly detected by the chemoreceptor trigger zones that alert the Vomiting Centre (WARNING: Poison in blood stream). Then you feel sick and vomit.

Controlling the flow

Oxaliplatin is a non-targeted chemotherapy drug and a part of my treatment. It is especially emetic, meaning it causes nausea and vomiting (emesis) in nearly everyone that has it. It even causes nausea and vomiting when given to patients in combination with super duper drugs that stop nausea and vomiting.

Drugs that try and stop nausea and vomiting act as road blocks along the streets that lead to vomit town. I'm a particular fan of one of these drugs, a steroid, because I now put on one kilogram of weight a week, have bouts of anxiety, and suffer from insomnia.

I refer to these side effects collectively as Roid Rage.


October 6, 2011

Vomiting Centre

Vomit Centre is perhaps the coolest name of any part of the human body.

It is located in the stem of your brain, in an area called the medulla oblongata. The medulla oblongata is old, meaning it is also found in the brains of other critters not so closely related to humans, such as fish. Old parts of the brain tend to do the really important stuff that animals with brains have been doing for millions of years, such as breathing and maintaining a beating heart.

The Vomiting Centre collects information from across the body and when this part of the brain becomes excited (in the neurological sense, not the 'I can't wait for the next episode of True Blood' sense) people vomit.

Signals INTO the Vomiting Centre

From other parts of the brain: You know these parts are talking to the Vomiting Centre when you want to vomit because you see someone else vomit. Or when my Nanna smells really ripe bananas and her stomach tries to empty itself.

From organs: You know organs are talking to the Vomiting Centre when you eat so much that your stomach expands and you throw up. Or when you have an intestinal blockage and you vomit.

From the inner ear: You know when your balance system is talking to the Vomiting Centre when you get get off a roller coaster feeling very dizzy, and vom.

From chemoreceptor trigger zones: These trigger zones are also in the medulla oblongata. They detect chemical abnormalities and poisons throughout the body, meaning it's chuck time.

Signals OUT OF the Vomiting Centre

Regardless of how the Vomiting Centre becomes excited (spending too long on a roller coaster, blocked intestine, being vomited on) the final action is the same: vomition.

Why does chemo = nausea and vomiting?

The way chemotherapy drugs make the body vomit isn't as straight forward as you might think. The next blog post will explain why chemotherapy makes the body vomit.

And it doesn't involve the stomach (well, not at first, as we all know the act of vomiting is ALL stomach).

October 5, 2011

Higher human

Yeah I know, very clever.
I'm slowly morphing into a higher human. Something half man, half medical apparatus.

This is the latest addition to my collection. It's a clever piece of latex designed to protect a PICC line from the evils of water.

It will replace something I now use and which I call The Plastic Bag With Rubber Bands.



Does my bicep look big in this?

September 29, 2011

Involuntary Foxtrot

I inherited Restless Leg Syndrome via Mum, from her Mum. Nanna would often complain of her 'jumpy' legs and then I started to get it, albeit infrequently, in my late teens.

Now I have it 24-7, thank you chemo
The Foxtrot, male moves

It feels like excitement that builds in my feet and then runs up my legs...then builds in my feet and then runs up my legs. Since starting chemo my arms have joined the dance. It isn't painful, but it does make sleep difficult.

That my legs and arms tingle like they want to dance is a side effect of oxaliplatin, a cool drug that I am given as part of my chemotherapy Folfox4. It isn't the star of the show, that title belongs to 5FU, but oxaliplatin has more interesting side effects.

I've gone platinum

Oxaliplatin (let's call it Ox from here on in) is a molecule with the metal platinum at its centre. 

Ox works well along side 5FU and enhances its effects. Like most chemotherapy drugs, Ox interferes with how cells copy and repair themselves. It particularly effects colorectal cancer cells, but is by no means specific to these cells. It's what oncologists call 'non-targeted therapy'.

Ox also affects nerves, mainly those in the hands, feet and mouth.

Pins and needles on your tongue

For the first few days after receiving Ox the body is hypersensitive to cold things. A cold drink makes your throat feel like you're trying to swallow matchsticks. Picking an apple from the fridge results in pins and needles in your fingers. Eating an icecream (as I discovered the other day) gives you waves of pins and needles on the inside of your lips and mouth. The sensation felt so interesting that I was forced to finish the whole ice cream.

Hyperexcited

Lots about cancer and its treatment remains unknown. It's not clear exactly how Ox affects peripheral nerves, like the ones in the hands and feet. It's believed to work by affecting gates in the nerve cell membrane that let ions – electrically charged sodium – in and out of the cell. These gates are called voltage-gated sodium channels. When lots of these gates open, lots of sodium ions enter and cause a shift in the charge inside the cell. This change in charge is how nerve cells go about the business of talking to other nerve cells.

Ox probably affects how these channels work by interfering with the concentration of charged calcium ions inside the cell. Messed up calcium ions mean the sodium gates get a bit carried away, become hyperexcited, and you get pins and needles when drinking something that isn't really that cold.

During Folfox4, people are given calcium and magnesium before Ox to minimise the number of these hyperexcited nerves.

Hyperexcited is also the best term to describe my Foxtrotting arms and legs.

September 25, 2011

Every step counts

'Go home and rest' is old advice. It's outdated.

Last month Macmillan Cancer Support released the Move More report. They wanted to remind patients that exercise can help increase their chances of survival, often better than any drug can.

Exercise should be in the headlines
'...if physical exercise were a drug, it would be hitting the headlines.'

Macmillan claims that 'taking it easy' during treatment should no longer be the line given by doctors. It seems that exercise does not increase fatigue during treatment, but does increase energy.

The bigger and better benefit

People with cancer that exercise live longer than those that don't, and their cancers are less likely to come back compared to people who 'take it easy'.

Amazing. This is something I can do, no hospital machines or needles required.

For my cancer in particular I can reduce the chance of it coming back AND my dying from it by 50%. F-i-f-t-y p-e-r-c-e-n-t! 

Imagine if your oncologist came to you and said 'We have a new medication, taking it means the chance of you seeing your 30th birthday will be 50% higher. Oh, and it will also improve your brain, circulation, muscle tone and cardiovascular system. There are no side effects. Do you want to try it?'

Of course you would.

Exercise during cancer treatment is not easy. The number of times my bag has misbehaved at the gym and the 15% (14 kg) of my body weight I lost while in hospital means I know this first hand. But I want to live as long as possible (that turns out to be quite a motivator) and so I exercise nearly every day.

Colorectal cancer is greedy

My cancer requires one of the highest exercise regimes to get the best results: 6 hours per week. That's 360 minutes a week, or 51 minutes a day. Sounds like a lot doesn't it?

To get my quota each day I try to combine exercise and my appointments (cancer patients have a lot of appointments). I ride my bicycle when going to see the hospital psychologist. I jog to my acupuncture sessions. I walk down to the juice bar to get my daily hit of liquid veg.

Count your METs

Research in this area uses a thing called the Metabolic Equivalent Task. MET equals 1 when you are sitting and resting. Doing an activity with an MET of 4 means you are using four times the energy and oxygen that you would if you were resting. A list of activities and their METs is here.

18 METs per week appears to be the magic number for colorectal cancer. But it is dose-dependent, which means even if you do 5 METs you still get some benefit. 12 METs benefits you a little more. 18 METs and above gives you the most benefit, cutting the chances of recurrence, and that other nasty thing that we don't like to talk about, by up to 50%.

September 18, 2011

Sly Fox

Chemotherapies are not all the same. They can be as individual as the cancer they are treating.

I have my PICC 2.0 and just started a chemotherapy called Folfox4. Cool name.

Get foxy

Chemotherapy is often a combinations of drugs. There is the specific cytotoxin that attacks cancer cells and then other drugs and substances added to support this. Folfox4 is specifically for Stage III coloretcal cancer. It has friends treating other colorectal cancers that go by the names Folfiri, Folfoxiri, Folfox6, Folfox7, Fuox, Fufox, Xelox, and Flox.

Folfox4 involves three main drugs:
  • Flurouricil - cytotoxin (toxic to cells)
  • Folonic acid - added to support Flurouracil
  • Oxaliplatin - cytotoxin (toxic to cells)

Fol + F + Ox + ?

The actual infusion that takes place in the hospital involves even more drugs. These are to control side effects (mainly caused by oxaliplatin) such as nausea, and nerve damage in my fingers and toes. These 'helpers' are given just before the cytotoxins are added to your body:
  • Glucose - yummy
  • Dexamethasone - anti-nausea
  • Kytril - anti-nausea
  • Magnesium suplhate - minimises nerve damage
  • Calcium gluconate - minimises nerve damage
  • Saline - refreshing
Everything goes in and out via PICC line 2.0

September 13, 2011

47 staples

My ultra low anterior resection was an 'open surgery' because the surgeons needed a good look and lots of light; a better look and more light than if it had been laparoscopic.

Laparoscopic versions of my surgery leave you with four small holes and a small cut near the pubic bone where the actual tumour and colon is pulled out.

My open surgery left me with a 33 cm incision and 47 staples. Oh, and I lost my belly button because the incision went right through it, rendering any 'button' unrecognisable.

Staples are usually made of titanium mixed with a bit of nickel.

Circular stapler
Staples were also used inside me to join healthy colon and rectum back together. Joining two tunnels back together is slightly tricky and was done by inserting a circular stapler up my bot bot. Circular staplers consist of two parts - the anvil and shaft and look like a weapon from Star Trek.

Joining colon and rectum is as easy as 1, 2, 3

1. Put anvil in colon, make a J pouch out of healthy colon and then poke the anvil out.

2. Poke the shaft of the stapler through the rectum (entering the rectum via the anus) and attach to anvil.

3. Start stapling. A knife in the stapler cuts away excess tissue and staples at the same time so you are left with an open and clean tunnel.

My J pouch (for holding poo) and colo-anal connection
Looking for leaks

Once the anvil and shaft are pulled out (via the same way it went in: the bot bot) the new join is tested for leaks. This is done in the same way you test a bicycle tyre for leaks - water and air. The area outside the join is filled with fluid and gas is pumped into the colo-rectum. Bubbles coming out of the colon mean a small hole is present.

The join is also tested by injecting dye inside the colon (again via the bot bot) and watching for leaks outside the colon.

Unlike the 47 staples used to close my abdomen, the staples inside my colon will stay there for the rest of my life. I can't wait for my next x-ray.

This may or may not be my surgeon

September 8, 2011

Bag business

Not enough is written about stomas, not just on this blog, but generally. Here are five things you wouldn't know about 'having a bag' unless you've had one.

1: I now fart in a more controlled manner. No more holding in wind, clenching muscles and worrying if the person next to me is going to smell it. Having a bag means that all gas is safely collected and ready for release at my convenience. Now that's civilized.

2: I can no longer sleep face down. Not sleeping face down is so much easier than the alternative (think popped water balloon filled with gravy).

3: There are as many types of bags as there are types of abdomens. Bags come in different shapes and sizes and with different ways of attaching and being emptied. I have had to change the type of bag I use many times because my belly has changed shape.

4: Stomas change. They can get smaller, bigger or redder. They can become more raised or less raised. They can develop little features such as bumps and sores. They change and keeping an eye on these changes is important.

Fluids always find a way
5: Bags can fail. I have had small leaks where adhesive has come loose or where the adhesive hasn't properly sealed around my stoma. I have also had catastrophic leaks while driving or walking around town. 

Everyone loves a good poo story

I decided to try jogging again 7 weeks after surgery. I emptied my bag and then strapped on my fancy support belt. This is a wide stretchy belt that supports my abdominal muscles. My abdominal muscles need supporting because I have a hole in my abdomen.

Thirty minute walk, 10 minute jog, 30 minute walk home. About 15 minutes into the walk home I felt warm chunky stuff running down my abdomen. It was one of the those sensations that didn't require prior knowledge to know what was happening.

Different materials, same idea
I was walking along a major road in one of Sydney's most alternate suburbs. I did what anyone would do and used my hands to stop the flow. I created a type of dam on the outside of my running shorts - trapping the brown flow between my thigh and man organs, preventing it from running down my legs. This worked, but I now know that my running gear is not impermeable to poo.

I continued walking home, hunched over and clutching at my genitals. This inner city suburb is such that I didn't look at all out of place. The smell didn't seem out of place either.

The freedom experienced by the poo outside the bag encouraged more poo to attempt escape and my stoma went into overdrive. I reinforced the dam wall, hunched over a little more and began walking with my legs together in a type of waddle.

An emergency call ('But weren't your hands dirty?' Yes) to my Sister meant she was outside her apartment block waiting with wipes and cloths. She has been living in this suburb for way too long. As she rushed towards me she said not to worry: 'You're not the first person I've seen sh*tting in this street.'


My current model. You're looking at the bit that faces my body. The hole is  cut larger depending on the size of your stoma that day.

August 25, 2011

Another 'to do'

I completely missed a fundamental piece of ground-breaking research into colorectal cancer.

I need to get married

I already drink foul potions and avoid a long list of 'bad' foods. I exercise, meditate, listen to classical music and watch comedies. I keep a journal and am part of a support group. I guess there is only thing left that could save me: marriage.

A study of over 127 000 people with colorectal cancer in the US found that married people have a 14% lower risk of dying from their cancer than 'single' people. The researchers say that spouses provide support, encourage their partners to be compliant during treatment and give the person love.

Do I really need a marriage certificate to live?

The study didn't actually compare married people with single people, it compared married people to people that have never been married (this includes people in relationships but not married).

I've never been married, but I am in a loving and supportive relationship. I cook for her and spend lazy weekends cuddled up. She keeps me away from McDonalds and makes me fresh vegetable juices loaded with enzymes and antioxidants.

But maybe something about the marriage certificate changes people? Maybe it makes people better nurturers? Perhaps 'marriage-hormones' result in a stronger immune system. Is that why the study only compared married to non-married?

It seems the marriage certificate may do something. Many studies have found that married people are happier, committed to the longer-term and have higher levels of well-being compared to single people and those cohabiting. While cohabiting isn't as good as marriage (at increasing your well-being) you can catch up to married people if you marry soon after cohabiting.

It also seems the marriage certificate may do nothing. Some researchers say once you account for people's economic status, backgrounds and culture, being married makes you no happier than cohabiting. Also, modern studies focus on patterns within the relationship and not the legal status of that relationship. How you talk, interact and resolve conflict appears to be more important that putting on a puffy dress and having doves released around you.

I think a new study is needed before I buy a ring

If we add 'De-facto' and 'Do not share place of residence with partner' or some other awkward phrase to the stream of hospital questionnaires we complete as patients now, the data should be ready in 10 years. But cancer survival is usually measured over five years.

To get the best of both worlds (while waiting for the data0 I am going to focus on having a positive and healthy relationship AND start pretending I am married.

This way my immune system will benefit from being in a healthy relationship and will think it is bound to another person by law (just in case that piece of paper does actually matter).

And in cancer circles that's what we call a win-win therapy.

No certificate here and they are doing just fine



August 18, 2011

Full circle

The term 'young' in cancer circles usually refers to people with cancer under the age of 50-60. For me, I prefer the term 'really young', but that would confuse me with the kid or young adult cohort (normally up to the age of 25). The labels and groupings are important because people my age face unique issues when we meet cancer.

One of those issues is becoming a child again

I'm currently wearing nappies. I've had the rectal tube removed, but there is a steady trickle of fluid that still wants to leave my bot bot. It looks like chocolate milk but smells like a dead wombat. And it's runny. So runny that I can't really choose when it is going to exit. Hence the nappies.

Having my parents around to help with cancer has been a blessing. I quite happily slipped straight into the role I must have once occupied of high-dependent demanding brat. 'I want...' and 'I need this NOW' have flowed quite naturally from my cancer-affected mouth.

So you're 29 and went shopping for nappies with your Mum, I get it

Mums are really good at this kind of stuff. Mum knew exactly where to get nappies and what sort would be best. And to prove I have almost completely regressed I let her pay for them.

I've come full circle. My parents have been there this year when I've lost control of my bowels, soiled my clothes, soiled my bed and soiled my dressing gown (I've soiled nearly everything you can legally soil).

They have handed me urine collection jugs, poo collection jugs, wet ones to wipe my bot bot and wet cloths to cool my vomiting body. They've given me cash. They have tried to feed me. They've bought me lollies. They have given me massages, cut my toe nails (bending at that angle was impossible for a while), served me food in bed and gone to the shop at stupid hours for a particular ice cream I've wanted.

Thanks to all the parents out there of 'young' people with cancer. We couldn't do it with out you.




Take the stage


Staging cancers can be a confusing science. You need to know three things: how much the tumour has grown (T), how many lymph nodes are involved (N), and whether the cancer has metastasized (M) or spread. Different values for these three factors combine to give you an overall stage (Stage 1, 2, 3 or 4).

TNM system

Someone could have a high T but a low N, and the person sitting next to them with the ‘same’ cancer in the ‘same’ spot may have a low T and a high N. These numbers matter because they are good predictors of how long someone sits on the Endangered Species List, or even if they will one day come off the list at all.

There are two types of staging: clinical and pathological.

My clinical stage: T4 + N1? + M0 = Possible Stage 3 colorectal cancer

When clinically staging colorectal cancers doctors use evidence collected via biopsy and CT, PET and MRI images. My clinical stage was uncertain because some scans showed that a lymph node may have been cancerous, but the images weren't crystal clear. My tumour was clearly the highest level possible (T4) because it could be seen on the images trying to eat other organs outside the bowel.

Clinical staging is imperfect because of limitations in medical imaging. This round of staging is quite important though because it determines whether you have chemo or radio or chemoradiotherapy before surgery (and how much).

A second round of staging takes place once the tumour has been sighted during surgery, removed and analysed by a pathologist.

My pathological stage: T2 + N0 + M0 = A good result, but…

While in hospital I didn't ask about my pathology results because I was being hammered by the leak, dehydration and infection and wasn't ready for additional stress. The doctor, knowing the results were positive, decided to unleash them on me after a few weeks:
  • The entire tumour was removed, cancer-free tissue on all sides
  • The tumour was downgraded from T4 to T2
  • Zero lymph nodes were cancerous

    Up down, good bad, win loss
    This result is good, but it is unclear how good. The chemoradiotherapy (and all my other healing strategies) did a good job of making the tumour smaller (at the time of surgery no tumour was outside the bowel wall) and wiping out that ? node. But, my tumour was once a T4 and there was once a ? node. Only if the pre-surgical therapies had completely killed the tumour or made it vanish would my course of treatment change.

    The fact remains: While the surgical result was good (I got to keep my bladder and some vital man-organs after all), and the tumour is gone, I still had a nasty cancer when I first walked into the hospital and that is what will guide my next phase of care.

    The next step

    I’m told that chemotherapy needs to start within 12 weeks of surgery or it doesn’t work so well at helping you get off the Endangered Species List. I’m told that my cancer is ‘high risk’ for either coming back in the same area or in another organ. I’m told the clock is ticking and we need to move soon, leaking colon or no leaking colon.


    August 12, 2011

    Google a body

    I studied some human anatomy and a bunch of non-human animal anatomy as part of my science degree. But that didn't help me when the surgeon first mentioned removing my seminal vesicle: I pretended I knew exactly where it was and then raced home and checked a textbook.

    Ah ha! That's why my bladder was in danger
    Then, confused about why my whole bladder, and not just part of it, may have to be removed, I took that atlas to my next consultation. Having the surgeon show me on an actual diagram what may have to go and why was worth more than a thousand line drawings on hospital stationary.

    I wish I'd known about Google Body

    Google Body is a free web-based atlas of the human body. You can select male or female, skin or no skin, all muscles, some muscle or no muscle.

    It allows you to fade organs and systems in and out, hide tisssues, and highlight organs. It also tells you what you are looking at.

    bodybrowser.googlelabs.com/

    I think Google Body is an excellent tool for patients to better understand their situation and participate in their healthcare.

    It's only one version of human anatomy (we're all a little bit different), but still a powerful visualisation tool

    Cancer patients hear a lot about lymph nodes, I have added them here (green nodes and channels)


    Found you seminal vesicle!



    August 6, 2011

    Packing heat

    I left hospital a changed person. 

    I lost 12 kg and gained an appreciation of high-fat, high-protein and high-everything food. I lost a tumour and re-gained the feeling that I will live a long life. I lost my sigmoid and gained abdo-bum. I lost my rectum and gained a new storage pouch made of colon. I lost fluid via a leaking hole and gained a tail.

    Yes, a tail

    The rectal tube starts somewhere upstream of the leak. It's job is to collect fluid that may otherwise leak out of the hole in my new colon and cause infection. A small balloon keeps it in place and the tube connects to a collection bag outside my body.

    The mission

    As I was strapping the bag to my thigh I felt like a spook packing a concealed weapon. A thigh holster holding a 9mm. Buttons, straps, shiny white plastic, nozzles, tubing, tape. I was in mission mode and the mission was simple: re-enter society and look normal.


    The unit: lucky I have one of the longest thighs in the world


    I have tail envy: leaving hospital with this tail would be cool

    August 3, 2011

    Leaking hole

    There are risks with every surgery. The risks are the things that frighten us during surgical consults. Acknowledging risk is part of the reason patients sign surgical consent forms.

    One of the risks when a piece of colon is removed is that the new connection could develop a hole. This is what happened to me, and the reason I am still in hospital after 21 days.

    Leaks happen in five percent of patients

    My surgery left me with a fully connected large intestine (minus the bad bits of course). The ileostomy (my Abdo-Bum) protects the large intestine while it heals by diverting waste at the end of the small intestine.

    Even though the large intestine is not handling food, it still produces mucous, sheds cells and is housing lots of resident bacteria.

    When the hole developed, this fluid was able to leave the colon and fill the space outside it. The body really doesn't like it when fluid that is supposed to stay in one area enters another. The result was an infection.

    Heal me

    I started feeling better several days ago. My small intestine has begun adapting. I can stomach food. The hot flushes have stopped. The reflux is under control. The dry retching after each meal has ceased. I'm no longer dehydrated. The fatigue is passing. I can hold a conversation.

    The hole will take a while to close. This happens naturally and over time. While it heals I will keep Abdo-Bum.

    I like Abdo-Bum, because after all, it saved my life. Had the colon not been bypassed that level of waste leaking out of the hole would have made what I have just been through look like a fairy tale.


    July 23, 2011

    Adaptation

    Surgery went well. In addition to losing my rectum, sigmoid and descending colon I underwent a partial vasectomy. The tumor ended up not being that intimate with the bladder and right seminal vesicle and the one-sided vasectomy shouldn't affect man-functions too much.

    Time to grow up Small Intestine

    I'm still in hospital. The temporary ileostomy I had means that what is left of my colon is bypassed. The main job of the colon is to absorb water.

    My small intestine is behaving as though nothing has changed, as though it can just keep passing water to its larger sibling. It's time to grow-up small intestine, it's your time to shine. Haven't you been training for this my whole life?

    The large amount of water leaving my body via this new junction means I can become dehydrated easily. The most unpleasant symptoms of dehydration include being told:

    'You look like crap'
    'Your eyes are like sunken pits'

    July 1, 2011

    Media Release

    Friday 1 July 2011

    EXPAT SAYS NO TO 40 CENT BEER, YES TO DRY JULY

    BEIJING–In a country where toeing the party line is the norm, one China-based expat has decided to stand up and say no to alcohol for the month of July.

    Susan Clear is an Irish-Australian and has been living in Beijing since 2007. She once believed her Irish genes and Australian binge-drinking behaviour would serve her well in the boozy Middle Kingdom, but Ms Clear simply was not prepared for the level of drinking in China.

    “I remember getting off the plane, and I definitely remember going to my first Chinese banquet. The next four years are kinda blurry” says Ms Clear.

    A liter bottle of beer in China costs a mere 3 Chinese Yuan, or 43 Australian cents. While their most famous liquor Baijiu still dominates social occasions in China, the country is now the largest consumer of beer in the world, and growing.

    “I think people drink a lot everywhere, but in China people's social lives revolve around eating and drinking. People live close to each other, less people drive, and there is literally a new bar to try every second week” says Ms Clear.

    Like thousands of Australians back at home, Ms Clear is abstaining from alcohol this July to raise money for adults with cancer. This is something Ms Clear knows about first hand.

    “A close friend of mine was diagnosed with colorectal cancer at the age of 28 earlier this year. This just isn’t something you expect to happen at our age.”

    “Cancer is scary, sad, and a reality check. Watching Ben take on cancer made me homesick and feel helpless, but also inspired me to do things today, not tomorrow” she says.

    When asked if Ms Clear was concerned about standing out in a nation that has long encouraged its citizens to stand in exactly the same way, all the time, she said that she had bigger things on her mind.

    “I want to support a good cause and be healthier at the same time.  I’m not sure of any link between alcohol and cancer, but drinking definitely leads people to do other unhealthy things, like smoking, grabbing a 3 am kebab or eating large oily hangover breakfasts, which are known risk factors.”

    But avoiding a cool beer on a humid Beijing summer night can be hard. Help Ms Clear by donating at https://www.dryjuly.com/profiles/susanclear

    ENDS



    Unlike these women, Ms Clear is going to walk to a different tune


    Conformity is serious business in China



    Tsingtao, China's number one beer

    June 27, 2011

    Short-term bum

    I learnt something in high-school biology that has shaped all my subsequent thinking about the human body. It was this: the body can be thought of, quite simply, as a series of bags and tunnels.

    The biggest of the tunnels runs right through your body, it starts at your mouth and ends at your bot-bot.

    When things go wrong with this tunnel new openings are sometimes needed. Just like roadworks taking place in a city, major thoroughfares in the body can be blocked, bypassed, detoured or closed down for service.

    My upcoming surgery goes by the acronym ULAR, but I prefer the term Ooh-la

    The Ooh-la will remove parts of the colon and rectum affected by the tumour and then re-attach healthy bits (colon, it seems, is quite stretchy and can be pulled down to meet what will be left of my rectum).

    As any good surgeon or plumber will tell you – where you have cracks and joins, you have leaks. To help the new join between my colon and rectum heal as quickly as possible after surgery, the whole area will need a break from the stress of handling poo.

    Early exit coming up
    Diversion + Ostomy = Diverting ostomy

    In addition to the Ooh-la then, I need an ileostomy. The 'ostomy' means that some of my insides will actually end up outside. The 'ile' comes from the name of the inside bit that will end up outside, the ileum.

    The ileum is small intestine and connects to the large intestine. During my surgery, the ileum will be (1) pulled through a tailor-made hole in my abdomen, (2) partially cut (like a fat sausage) and then (3) sewn to my skin. Ta-da, new place for poo to come out!

    Ben, meet Abdo-Bum

    The ileum + hole in abdomen + place for poo to come out is called a stoma. You can also have stomas that are made from colon (colostomy) or that allow urine to leave your body (urostomy).

    The idea is to keep Abdo-Bum for 4 to 12 weeks, just long enough to let my newly joined colon-rectum heal and handle poo. Then this hole thing will be reversed.

    Final fact

    I will still get to use my original bum while Abdo-Bum is around because the colon will be collecting cells and producing mucous that will need to leave my body.

    An ileostomy in five steps

    June 24, 2011

    From Oz with love

    Dr Oz has had two polyps removed from his colon in the space of a year, one of them precancerous. He recently wrote about it in TIME magazine. I mean, this is Dr Oz - former cardiac surgeon and health and fitness nut!

    He makes the outstanding point that bowel cancer can appear in healthy people too (ie. Oz and me).

    You do not need to be a 190 kilo balloon who exclusively eats fries and steak shakes to contract this cancer.

    Don't be scared, just be mindful.

    Photograph by Marco Grob for TIME




    June 23, 2011

    Pooology

    I have been comfortable with poo ever since I realised that playing with it was a big part of a zoologist's life.

    Giant panda poo
    You can tell a lot from animal poo. Scientists use poo to work out where an animal has been, what time it was there, what it recently ate, if it is ready to mate, has mated, or is pregnant, if it is stressed, if it's a male or female, how old it is, and how related it is to the animal next door.

    For some animals you see their poo more than you see them. I once met a PhD student in China studying giant pandas who had only seen one giant panda in three years of looking, and even then he had had to use a secret video camera at night, and only ended up with a picture of its leg.

    Luckily giant pandas produce a lot of poo and are known to excrete up to 120 green balls of shredded bamboo every day. To describe the shape, size, colour and moisture content of the enormous amount of poo produced by giant pandas, and all the other species that make poo, classification systems are needed. We are no different.

    Classifying our poo

    The Bristol Stool Chart is the medical equivalent of zoological guides for identifying non-human animal poo.

    The different Types look different because they have spent differing amounts of time in the colon. The colon's main job is to absorb water and some minerals from poo, so the wetter and less formed the poo the less time it has spent in the colon.

    During chemoradiotherapy I sometimes went from Type 2 to 5 to 1, in a single day.

    Now this chart is of particular relevance to me because very soon I am going to have my colon drastically shortened, and even more interestingly, I am going to have a procedure done that means what is left of my colon will be temporarily bypassed, completely.

    Remember what I said about runnier poo spending less time in the colon? Imagine what poo that has spent no time in the colon looks like.

    Got the image? My work here is done.


    Tricks like this can only be performed by poo after travelling through the colon

    June 16, 2011

    I'm an endangered species

    From an early age I respected animals and felt a need to protect them. I took conservation subjects at university, I stopped eating animals, I stopped buying leather. I went to work for the government department charged with protecting Australia's wildlife. Then I went to help the Chinese look after some of their endangered species.

    And then I became an endangered species

    Now I get to apply all the conservation knowledge I learnt to myself. Radiation therapy is like using pesticides to control noxious plants in the immediate area. Chemotherapy is like sending in rangers to look for hidden poachers. Cutting the tumour away is like building a fence and removing predators. Herbs and supplements are like nourishment for damaged ecosystems.

    Classifying threat levels

    The Red List is the predominant classification system used to work out how threatened animals are. It was developed and is kept up-to-date by the IUCN (International Union for Conservation of Nature).

    There are a bunch of classification levels, from Critically Endangered (think pig-tailed langur) to Least Concern (think red kangaroo). The system considers how many animals remain on Earth, current threats, and whether the population is decreasing or increasing.

    Once an animal has been identified as being of conservation concern, people begin trying to save it. The one rule in conservation planning is that you need a number of different protection strategies, because ecosystems are complicated and no animal or plant lives in isolation.

    My conservation plan

    I was listed on the Red List on 7 January 2011. My plan is no different from those designed to save species, except mine is selfishly devoted to saving just one critter: me.

    A major thing I learnt from my scientific training is that no two ecosystems are the same. Something that works in one area may not work in another. One cancer treatment that worked for your Uncle Tom, may not work for me.

    Cancer is a systemic disease that is likely to have different causes in different people. My conservation strategies include addressing the anatomical, psychological, spiritual, nutritional, immunological and physiological aspects of my cancer.

    All good plans should set a time frame for action. My goal is to be re-listed from Critically Endangered to Least Concern by January 7 2012 (exactly one year after my diagnosis).

    This sign appeared on my bedroom door shortly after listing.