Happy birthday Tumour

Dear Tumour,

I'm not exactly sure how old you are turning today, I know I am turning 29.

Some doctors say you must be at least 5 years old, because that is how long polyps take to turn into cancers. Other doctors say that polyps don't take anywhere near that long to turn into cancer in young people like me.

One year before you were found I had open surgery to remove my appendix, you must have still been hiding in the mucosa of my sigmoid colon then, otherwise you would have been spotted.

It has been a big year for us.

You breached my sigmoid wall, attached yourself to my rectum and are now waiting at the tissue boundary of my seminal vesicle and bladder.

I published some articles, discussed science on the radio, appeared on Chinese TV and a magazine cover, grew my company and visited The Philippines, Morroco, Malta, London, Madrid and Seoul.

What you achieved had more impact though because I didn't totally challenge anyone's world view, or threaten their life.

I've come to like you and everything, but I hope this is the last birthday message you get.

Ben Bravery

I was going to make you a cake in the shape of a colon but then decided to just get you some extra radiation

EFF YOU!

It was a clever chemist that decided to call 5-fluorouracil FU.

FU! is the name of my chemotherapeutic. I have a bottle of it attached to my arm connected to a tube that leads to my heart. FU! sits in a balloon in this bottle and slowly enters my body at 0.5 ml per hour, 24-7.

FU! is toxic to certain types of cells and is called cytotoxic ('cyto' is fancy for 'cell'). It targets cells that are dividing quickly. Cancer cells divide quickly because they are out of control and no longer follow the rules of the body.

It turns out that cells dividing quickly and frequently need a lot of uracil (this is the U in FU!). FU! is like uracil in disguise.

The disguise

FU! looks like normal uracil, but it has switched one of its hydrogen atoms for a fluorine one (the F in FU!). That's the only difference between the uracil in disguise (FU!) and genuine uracil - but that one change means it causes havoc inside cells.

The impostor gets messy

FU! looks enough like uracil to get inside a cell, but it isn't uracil, and so when the cell tries to use it things go wrong. The cell converts FU! into several different molecules that then interfere with how the cell copies DNA.

Remember that FU! has to look enough like uracil to get this far, otherwise the cell would break it down and clear it out. Clever FU!.

Dumb FU!

Cancer cells divide frequently, but so do cells in the mouth, intestines, heart and immune system. FU! dresses up and tries to get into any cell that needs uracil. This leads to a long list of potential chemotherapy side effects that include mouth ulcers, a weak immune system and bot-bot troubles.

I've had all three.

5-Fluorouracil (5FU)

A day in the life

Each day is different but here is a typical clinic day. I have one clinic day per week.

08:00 - Go for a 30 min jog. I don't measure distance anymore because my jogging speed depends on how worn out I am

09:00 - Make about 750 ml of fresh fruit and vegetable juice and have breakfast

09:30 - Wrap left arm in plastic and shower one handed, moisturise the skin that gets hit by radiation, brush teeth with baby soft toothbrush and herbal toothpaste (mouths get sensitive during chemo). Measure my temperature (the chemo reduces my immune system a little so I need to watch out for infections)

10:00 - Head off to the hospital

11:00 - Appointment with Medical Oncologist to review side effects and chemo treatment

12:30 - Down to the radiation therapy clinic four stories under the hospital for my daily dose

13:00 - Catch up with Radiation Therapy Nurse for check-up and to monitor side effects

13:30 -  Appointment with Radiation Oncologist to review side effects and radiation treatment

14:00 - Have blood taken to check red and white blood cell levels because new chemo bottle will be attached tomorrow

15:30 - Arrive home and go to bed

19:30 - Wake up and have some dinner

22:30 - Back to bed

On other days you can find me:

• in the Chemotherapy Day Unit having my PICC line dressings and chemo bottle changed
• at relaxation or meditation sessions
• receiving acupuncture
• at my computer working
• seeing an energetic healer
• in bed or on the toilet (these can take over the whole day)

Rest, rest and more rest

Fitty (per) cent

50 takes on cancer in Things Fall Apart

I am half way through chemoradiation therapy and I still look and feel human.

All together I will have 28 doses of radiation. This is called long-course radiation. Each day I lay on the zapper, am placed in exactly the same position (my tattoos help the technicians line me up just so) and hold still while three beams of ionizing radiation are directed at my tumour.

I lay on my belly and first have to pull my man-bits down (to move my baby-making machinery as far as possible from the beam). I became okay with manipulating my genitals in front of strangers at about the same time I became okay with baring my bottom.

Remember my yellow car, red car analogy for cancer? I used it to explain the basic difference in the way cancer and non-cancer cells behave. It is easy to think of cars because we all know what they are.

Red cars are out of control and no longer follow the road rules. The problem is a big cluster of them are parked at the centre of a yellow zone filled with yellow cars. For the radiation to get to the red cars it has to pass through a lot of yellow cars: this means normal healthy cells are being zapped during the radiation.

A cell from my small intestine being cared for and repaired

The yellow cars know how to repair themselves or know where to go and get fixed. When the red cars decided to abandon the road rules they also threw away the repair manual and directions to the mechanic: this means cancer tissue is not good at healing itself.

Damaged and without road-side assistance: cancer cells

This basic difference means that all the healthy tissues in the firing line can sustain damage without shutting down. The tumour isn't so lucky. The hope is that enough cells will get damaged by the ionizing radiation, shrinking the tumour.

Undie Sunday

By Cassie, Brisbane, Australia

When my best friend Ben asked me to write a guest blog about Undie Sunday, I immediately said ‘yes’. How do you say ‘no’ to someone with cancer?  

For followers of Ben’s blog, you will know that Undie Sunday (undies is an Australian term for underpants) is an event organised by Rotary Bowelscan to raise awareness for bowel cancer and Bowelscan testing.

I bought Bowelscan kits at the event and am keen to start smearing my poo on cardboard and posting it off to a lucky lab tech to analyse for hidden traces of blood. In my moments of hesitation about completing this test, two thoughts convinced me that it was a good idea:

1. I really can’t hide behind the old ‘it will never happen’ idea anymore
2. I am more than happy to let a stranger stick a cold metal pole up my vagina every 2 years to test for a cancer that is far less common

The event aimed to break the Guinness World Record for the largest number of people in their underwear in a public space, which is currently set at 547. We had to dance for 5 minutes in our underwear to “Shaking that Ass”. Other highlights were the ‘dancing granddads’, spotting Michael (the winner of the latest Beauty and the Geek) and watching Australia’s most accurate skydiver land in his underwear.

Unfortunately we we didn't hit the Guinness World Record. But we raised awareness and had fun.

Wearing underwear in public is a serious deal when it comes to world records. G-strings and lacy or see-through underwear were banned. Ben also advised me to steer clear of crotchless panties, even they though they weren’t officially prohibited. Interestingly, girls were required to wear a t-shirt but males were instructed to take theirs off.

Thanks to my friends for dropping their pants in public

The take home message from the day was that bowel cancer is a serious disease that is both preventable and curable and that early detection is important. I encourage everyone to buy a Bowelscan testing kit.

I am looking forward to dancing in my underwear with Ben’s cancer-free bot-bot by my side at next year's event.

Cancer cars

Cancer is, quite simply, out of control cells.

Imagine two cars driving down a highway, one red and one yellow. The yellow one does the speed limit, stays inside the lines, checks the side mirrors before changing lanes, indicates ahead of time and keeps a safe distance from other cars. The red car speeds, weaves in and out of traffic, overtakes dangerously and tailgates.

Cancer: Out of control cells

The yellow car is clean and shiny. The red car has damaged paint and stinks.

Yellow cars are the normal cells in your body. The red car knew the rules once, but now ignores them. This is cancer.




The rules

Health: Cells following the rules

Normal cells in your body follow the rules of your body. They divide when needed to and stop when told. They interact with other cells in a normal way and behave in a way that respects cells around them.

Cancer cells do none of these things. They grow when they want to and how they want to. They force blood vessels to grow to feed them. They recruit normal cells to behave in strange ways. They get greedy and start to take over other tissues.

The things that make cancer cells dangerous can be turned against them. Oncology (the branch of medicine related to cancer and its treatment) exploits these cancerous traits. In fact, these qualities are exactly those targeted during chemotherapy and radiation therapy.

Cells are the building blocks of life, and cancer

FAQs

What is the time line?

Preoperative chemoradiation therapy = 1.5 months

Recovery = 2 months

Surgery and recovery = 2 months

Post-operative chemotherapy = 6–9 months

(I plan to be cancer free by my 30th birthday)

How much is all of this costing?

It's costing me very little, it's costing my country quite a lot. The vast majority of expenses are covered by our national health care scheme and so far I have only had to pay for the initial colonoscopy and a few other minor expenses. I have visited a gastroenterologist, general surgeon, colorectal surgeon, radiation oncologist, medical oncologist, dietitian, occupational therapist, anaesthetist, andrologist and social worker, with very few out-of-pocket expenses. I'm reminded of something about Australia being the lucky country.

Is the plan still to return to China?

Yes. I plan on heading back as soon as I am healthy and free from this cancer (this will most likely be after the postoperative chemotherapy in 2012). I will however need to return to Australia more frequently for follow up tests and surveillance.

Did China give me cancer?

This question is a common one. We lack the science to be able to say what exactly gave me cancer. China is polluted and they still use chemicals in their agriculture and manufacturing that are banned outside China. But China has colorectal cancer rates (my type of cancer) 1/3 of the rate of Australia.

How did I get cancer?

This is a giant question that will most likely remain unanswered. There is no history of colorectal cancer in my family. A brilliant geneticist has been working on my case and testing the DNA of me and my tumour. I have tested negative for known genetic conditions (sch as FAP and HNPPC) and mutations. The geneticist says that it is highly likely that a mutation is responsible for my cancer because I am too young to have an older person's cancer. Finding that mutation will have to wait until science reveals more mutations to screen for. The geneticist will hold on to my blood and tissue samples and continue to test for mutations and causes as they are scientifically revealed.

Run bottle, run

Exercise is cancer-limiting and I was doing lots of it in the build up to treatment. Then the tube leading to my heart was connected to a baby bottle full of medicine and my bum was zapped with energy and the thought of exercise disappeared almost as quickly as my appetite.

But people should exercise, and so I started by walking on a treadmill until the anti-nausea medication restored a tolerance for food. Then I started jogging again.

Jogging with a PICC line is interesting, but not as interesting as it must be for passersby. I look like some type of half-man-half-machine from the future. The bandage wrapped around my bicep is big, the tube leading from it to the chemo bottle is obvious and the bottle stuffed down my singlet takes the shape of a metallic control panel.

Exercise can be used to prevent cancer, prevent tumours from spreading and prevent tumours from returning. Scientists have worked out how much exercise is required for each type of cancer.

Colon cancer is a demanding cancer when it comes to exercise.

My summary from Anticancer by D. Servan-Schreiber

Exercise can be measured in METs. A measure of 1 MET is the amount of energy your body needs to function when resting. Sadly, watching TV provides the body with as much exercise (1 MET, ie. none) as resting, even if you change the channel a lot like I do.

If your body is fighting breast cancer studies have shown you can really help it out by exercising for 9 METs a week. To help fight colorectal cancer you need to do 18 METs a week. To have an effect on prostate cancer you need to do 30 METs a week.

I feel scarred and heavy, but I have to keep moving

Mum's the word

By Jo, Melbourne, Australia

I would like to commend my son Ben on his strength and determination to fight his cancer and to all of you who are supporting and loving my boy.

It was not an easy road for him, or those who love him, to get to this point. We have cried and have been angry, but mostly we have shared disbelief that this happening. My own acceptance that this is happening to my son has been difficult, to say the least.

The whole experience to this point has been surreal. I have listened carefully to diagnoses and treatment plans, but felt at many times that we were in the room watching it happen to other people, not us.

We are getting there. Yes this is happening to us, this is happening to my son.  It’s not another family with cancer that you hear about from a friend of a friend. This is us.

Acceptance has lifted a heavy weight and Ben has set an example for me to follow.

Now we fight. With all the preliminary tests complete and my future grandchildren in the freezer we are ready to begin the fight of our lives.

Somehow it’s easier now that the treatments have started. Chemo 24/7 means it is difficult to watch a man who only last week grazed all day struggle to eat so little. Medication can restore his appetite. French toast and baked beans are the order of the day.

Radiation so far has had no side effects. Today (treatment 4 of 28) the technicians showed me how they set him up on the machine. I watched the laser lights criss-cross his body and silently prayed the they knew what they were doing and hit the right spots every single time.

While there is no pain during the radiation the enormity of it all sent a chill down my spine.  Holding back the tears, I quietly left the room and waited for it to be over.

The hardest thing for me as mother, protector and friend is I want to take this away from him.

I can’t, and it is the most helplessness any parent can feel because that’s our job: we take away pain, fix problems and we make things go away, usually!

Not this time. This time we just stick together and ride it out. I tell him I love him every day.

Mum xxx

Chemo cravings

The chemotherapy bottle was connected on Wednesday and I underwent all three acts of the chemo cycle almost immediately.

Chemotherapy: A digestive opera in three acts

Act I: Lose appetite
Act II: Become nauseous
Act III: Vomit

In a bout of maternal intuition and knowledge transfer, Mum warned me that chemotherapy would feel like being pregnant. I have no way to compare chemotherapy and pregnancy, but between us they sound like similar processes.

Ways having chemotherapy is like pregnancy

• You are tired
• The taste of food changes
• You go off some foods, immediately and violently (the thought of cooked mushrooms makes me rush for a bathroom)
• You get cravings (I can't get enough salty French toast)
• You watch other people eat all day and then wake up at 1 AM hungry as hell

A staple for vegetarians, lost to me for the time being

Piccolo piccolo

Because my greedy tumour is big and invading other parts of me, I need to have chemoradiation therapy for six weeks. It is hoped that these two treatments will shrink the tumour and make surgery easier.

Chemotherapy before surgery is different to chemotherapy after surgery.

The role of chemotherapy before surgery, when used with radiation therapy, is to sensitise the tumour to the radiation. In my case, the chemotherapy is a low dose and needs to slowly enter my body 24-7, for six weeks.

For this you need a PICC line. A PICC line is like an iPod crossed with a drip: It is funky looking, based on cool technology, and strapped to my arm.

PICC stands for peripherally inserted central catheter

It is peripheral because the tube carrying medicine starts outside my body and then dives inside a vein in my arm. The inserted bit refers to the fact that a doctor has to feed the line in and this is done under sterile conditions, like a mini-surgery. It's central because the tube is fed all the way to a major vein right near my heart. Catheter is another word for 'tube into body'.

The tube stays in place because of a funky piece of engineering that sticks to my arm and clips the tube in place. In the olden days they used to have to stitch the clip into the arm, but not now.

The clip on my arm that holds the PICC line in place, I can't help seeing animals where others see man.

Right, but what does it feel like?

I can't feel the tube inside me, and I didn't feel it making its way to my heart. I had a local anaesthetic in my arm to numb the skin where the tube was first inserted only. The point where the tube enters my arm is a little sore but that will go away.

The thin tube enters a vein in my left bicep, travels across my chest and stops in a major vein that enters the heart. 

It begins

It's official, I'm now fighting my cancer with cytotoxins (chemotherapy) and 

ionizing energy (radiation therapy).

Rockstar band: A hospital band showing my rockstar surname

Hello heart:  The PICC line that will deliver chemotherapy medicine close to my heart for the next 6 weeks

Baby bottle: The small bottle I wear around my neck full of chemotherapy medicine that feeds the PICC line

Medicinal canvas: A lot of work goes into finding the right way to zap the tumour

  

Radiation rescue: The position I lie in while my bum is zapped from three angles.

Identity is everything: The photo used each visit to prove I am me