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.

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%.

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

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

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.