Ben - aged 28

Bowelscan

Bowel cancer can strike at any age. It is most common in people over 50, but that statistic doesn't mean much to me, because I have it and I am 28.

Bowel cancers often start as polyps

Polyps take years and years to turn into cancers.

Studies show that bowel cancers in young people are normally diagnosed at a later stage (a more serious cancer) compared to older people. The main reason: old people are checked for bowel cancer even if they have no syptoms, young people are not.

If you live in Queensland, you can order a $12.95 kit online from Bowelscan Queensland and have yourself tested until April 30. You have to drop the test off at a pathology centre and the results will tell you if you have a polyp and maybe cancer. People in other states can order the test at different times throughout the year.

Nice bum

Bowelscan Queensland is also holding an event in Brisbane to set a record for the most number of people in a public space in their underwear. I can't be there because I will be busy having my bum zapped by radiation. Here I am in spirit:



Ben, aged 28: bowel cancer



Local terror, distant bliss

PET results are back.

The last test in the Trio did not pick up any distant disease. The CT, MRI and PET are all in agreement that it appears, for now, I don't have any other tumours calling my body home.

The game changes when you go from having no tumour to having your first tumour. That's a big jump from healthy to diseased. Having distant disease (secondary tumours) changes the game again. I imagine the jump from diseased to more diseased is as scary as the first jump. For now I only need to focus on combating the one tumour.

Collective phew.

One problem at a time is just that much easier to handle

88 fear

Eight is pronounced 'ba' in Chinese. The Chinese web community puts two of these together to produce the equivalent of 'bye bye'.

Bye bye fear.

It happened four days ago but I can't remember when exactly. I am also unaware of the why or how. My fear just packed its things and left. The anxiety and worry about my mortality that had been residing in my belly (dangerously close to my sigmoid) decided to leave too.

I feel calm about my cancer now. And I feel informed, in control and supported.

Naked on a table

Because my greedy tumour is big and invading other tissues I need preoperative chemoradiation therapy before surgery. Radiation is a very serious therapy because getting it right maximises the dose given to the tumour and minimises the dose inflicted upon currently healthy bits of me.

You can't have body image issues when you have cancer. Luckily for me I don't. In the last week I have had my genitals examined and a finger up my bot bot and yesterday I was naked on a table while four people counted my vertebrae, felt my tail bone and drew lines down the crack of my bum.

Finding the right position

The purpose of this session was to find out the best position for me to lie in while radiation enters my body. The radiation will later be fired at me from three directions.

Using a felt pen the technicians drew lines and cross hairs on my body. These aligned with a laser light system that will later guide the direction and angle of the radiation. I need to have the radiation in exactly the same spot each time. Because of that I ended up with four tattoos.

I never thought I would have a tattoo

The tattoos are four dots that line up perfectly with the laser light system that will later guide the beams of radiation. The tattoos are permanent.

If I was fair skinned I would have been more worried about them. But my four tattoos blend in perfectly with the other 254 dots that cover my body (yes, I counted my moles one day).

This is me.

Tip me

I have cancer in a part of my body that digests food and diet is known to play a large role in the development of cancer.

So I have made some changes to my diet and lifestyle, if you have any further tips I would love to hear them  (commenting below means everyone can learn from you).

Changes Ben has made since being diagnosed with cancer:

• Breakfast: Bran, puffed millet, puffed rice, psyllium husk, ground flax seed, bee pollen + soy milk.
• I juice twice a day. Each juice has green tea leaves, turmeric, black pepper, garlic and bee pollen as its base. Ingredients are a mix of beetroot, tomato, cucumber, celery, carrot, zucchini, apple, lemon, lime, orange, strawberry, broccoli, pineapple.
• Two bowls of mixed berries per day.
• I swim 1.5 km per day and run for a minimum of 30 minutes.
• I aim for two meditations (30 min each) per day. 
• No dairy products, no meat products.
• No fats except olive oil and flax seed oil.
• Green and rooibos tea all day.
• Two glasses of pomegranate juice per day (thanks Rach).
• I read through a series of affirmations when I remember to (thanks Sana).
• I use a non-BPA and non-leaching drink/tea bottle.
• I don't warm things up in the microwave in plastic containers.
• Refined sugar intake is limited to three squares of 70% cocoa chocolate per day, I usually eat this alongside 100 ml of red wine.

Radiation station

Thanks to an MRI I know that the tumour has gone greedy and invaded other tissues. This means that operating now is not the best option. The team tell me that my best chances of survival and avoiding a relapse are to undergo chemoradiation therapy before surgery.

Chemo + radiation = therapy

The chemo is not the main part of this treatment and I will be given a low dose 24 hours a day via a very cool tube that enters my arm and stops just near my heart. The chemo is given to help the radiation work; the radiation is the major part of this treatment.

Pelvic party

The radiation therapist basically needs to irradiate (ie. zap) the entire pelvic area with ionizing radiation. Ionizing radiation is so strong that it can actually rip off an atom's electrons. The idea is that the radiation will mess up enough atoms in the DNA of the tumour cells that they stop being tumour cells and die.

Collateral damage

A lot of important organs live in the pelvis like the small intestine, bladder and prostate. Other important things live around the pelvis like the testes, penis, anus and hip bones.

These areas don't want the radiation, but they are in the line of fire. The radiation only lasts for a few minutes per day for 28 days, but it can produce enough side-effects to make the strongest of people quiver with anxiety.

Possible side-effects:

• Impotence
• Problems peeing
• Problems pooing
• My anus could stop working
• Intestinal bleeding
• Skin burning and peeling
• Hip bone damage
• More cancer (the radiation is strong enough to cause cancer in currently healthy tissues)

I may get these or I may not. The only certainty is that I will be infertile after the treatment. The dose I will be getting is way above the level needed to knock the testes out of action. I'm sad about that, but the actual act of making a baby is not the best part of having kids anyway, right?

As a zoologist I shouldn't show pictures of animals holding hands, but a family is a family no matter how it came about

I like my sugar radioactive

I completed the Trio of Scans today and had a PET to compliment the CT and MRI. The Trio all use machines brought back from the future and are based on science that makes my head hurt.

A PET scan measures tissue function (not structure like the CT and MRI). Tumours behave differently to other tissues in the body because tumour cells replicate quickly and gobble up sugar.

Sugar molecule emitting radioactive funk

Watching sugar being used is hard because sugar molecules are tiny. They're also everywhere in the body, and once they get sucked up out of the blood stream, they're buried deep in tissue. For the doctors to 'see' the sugar they need to make it different and obvious. That's how I ended up 'eating' radioactive sugar.

Active radio

Radioactive sugar is made by substituting one part of the sugar molecule with a radioactive one.

The term radioactive means that something is not stable and emits certain particles. In my case, the radioactive sugar had a funky Fluorine ion attached to it that emits positrons. Positrons are positively charged electrons and can be measured by the PET scanner.

Sugar in, sugar out?

At no point did I glow

To the body this radioactive molecule looks like sugar and is sucked up by cells. But it isn't sugar and so once  inside the cell it can't be gobbled up and broken down. This means the radioactive sugar remains stuck inside the cell that first took it in. Over time the radioactive part emits enough positrons to become stable again, stops being radioactive, becomes normal and dull, and is broken down by the cell.

I heart my pet

PETs can pick up small tumours that aren't big enough to be seen on a CT or MRI. They can also help clarify what is and what is not actual tumour tissue around the major tumour. In my case, there is one other structure that may or may not be tumour near the greedy tumour already  in my sigmoid colon. The PET should help resolve this.

The image a PET scan can produce. The coloured tissues contain the funky sugar.

 

Tumour attack

The minute a tumour is found, you and the doctors want to know if the primary (first) tumour is the only tumour, or if it has set up other tumours around the body. The process of the first tumour releasing cancer cells and setting up shop in other organs is called metastisis.

My tumour has not done that (that we know of from the CT and MRI). What my greedy tumour is doing is known as 'invasion'. Invasion is where a tumour physically grows into other organs and tissues. My tumour started inside the tunnel of the sigmoid colon and then invaded through the wall of the sigmoid and then stretched out and invaded the outside of the rectum. My tumour is also thinking about invading my right seminal vesicle but for now it's just touching it and hasn't broken through.

 My schematic showing the sigmoid and greedy tumour

My tumour was able to invade my rectum because of my particular anatomy. Parts of my sigmoid colon hang down into the pelvic cavity - lower than other people's. For most of the people reading this, their sigmoid stays in the abdominal cavity.

Research shows that the best way to treat T4 tumours that have invaded the rectum is to zap them with radiation and treat my body with chemotherapy. Doctors call this preoperative chemoradiation therapy.

If the surgeons were to operate now, they would be left wondering if they had removed all of the tumour. Removing all of the tumour is important because just a few missed cells can form another tumour.

My tumour is only one sprawling town, but every house (cell) needs to be removed

No ice cube tray?

Andrology is the brother to gynecology, making andrologists specialists in male reproductive (willy bits used to make babies) and urological (willy bits used for peeing) health. Andrologists are very good at storing and analysing sperm and hang out in places called Andrology Units. This is important to know because the terms Spank Bank and Wank Bank do not appear on hospital floor plans or directories.

My clinic would use these as a joke, to relax men and lower stress

The Room

After finally finding the reception desk of the Andrology Unit yesterday, we (I take people with me everywhere) made jokes about a small room 1.5 m away that was probably 'The Room'. We laughed that off because the room was so central, exposed and obvious. I stopped laughing when handed a cup and told to go to The Room.

The waiting room is next door to The Room. After locking myself in The Room I realised I could still hear everything going on outside The Room and that people must therefore be able to hear everything going on inside the The Room. Hmmmm.

The Room looks like it has been decorated using a 1939 issue of Nursing Home Digest. The chairs were old fashioned and cheap. The walls were Hospital Beige and bare. A laminated A4 sheet (everything in the room, it appears, must be wipeable and washable) thumbtacked to a cork board told me what to do and in what order. A sad looking set of drawers contained old male and female porn mags.

The only feature manufactured after 1970 was a DVD/TV in the corner, but it had no laminated A4 sheet telling me what to do and I spent most of my time in The Room trying to get it to work.

It's done, what now?

Afterwards I had to fill out forms and answer questions like 'In the case of your death, what do you want us to do with your sample?' and give information to questions like 'How much of the sample missed the cup?' and 'When did you last ejaculate before providing this sample?'.

My semen will now be measured. They will look at how many sperm I produce (a normal sperm count is around 15 million per milliliter) and how well they swim (in normal semen about 60% of the sperm should be good swimmers). The semen is stored in 5 to 10 thin straws that hold about half a milliliter each and kept at -196 C. They can be kept that way for at least 10 years.

As one friend put it 'I cant seem to get the idea of you going off into an ice cube tray out of my head'. For the record, at no point during the process did I see or was I handed an ice cube tray.

Analysis is needed because not all sperm are the same

Daddy Deep-freeze

Because I need pre-operative chemoradiation therapy (chemotherapy and radiation therapy given at the same time), I need to think about making a trip to the sperm bank sooner rather than later.

This is just a type of insurance policy because most chemotherapies and radiation therapies only affect fertility during treatment and for a short time afterwards. 

There is a chance though that my fertility could be affected long term. The oncology team have advised me that I am way too good-looking to deny another human my bone structure, tan and height.

The oncology team agree with me that these genes need to be passed on

Greedy tumour be my friend

My Mini Rave in Isolation (MRI) revealed that the tumour has in fact breached the wall of the sigmoid colon and attached itself to the external wall of the rectum.

Bugger.

Not the best outcome, but still a curable cancer. I want to make that point again: this is still a curable cancer.

So how does this change the game plan?

• My tumour can now be classed as a T4 tumour, but the actual stage of my cancer depends on analysis after surgery
• My cancer will now be medically treated as rectal cancer, even though the tumour is in the sigmoid colon
• I will need about five weeks of chemotherapy and radiation therapy before surgery
• The surgery will now involve removing part of my rectum too
• The operation will be open surgery and not laparascopic
• I will have a temporary stoma and ileostomy bag for three months after surgery (can I have a round of applause for admitting that in such a public forum?)

The tumour won't stop until it has hold of all the fun things around it

MRI: Mini Rave in Isolation

You hear a lot about MRIs and how confined and noisy they are. I think for these reasons a lot of people are frightened of them. I thought the whole thing was kind of fun because my MRI allowed me to relive a dance party atop an aircraft carrier and fire rockets at my tumour.

A MRI is essentially a mini-rave. The machine emits pulses of base that you can feel moving through every cell in your body; the straps keeping you in place on the bed shake. Your mouth is a little dry and vision a little bit blurry (side effects from the intestinal relaxant they inject in you). It is warm and you don't have a lot of personal space. The noise is electronic, ryhthmic and repetative. A fan blows cool air on your face.

The whole thing was similar to a dance party held atop a Russian aircracft carrier (complete with aircraft) moored off the coast of China that I went to last year. I spent half of the MRI dancing (in my head) to the noises emitted by the machine and this made the time fly (MRIs can last a while).

No more dancing, time to fight

What was I doing for the second half of the scan? The noises and sounds emitted by the MRI are also really similar to the sounds emitted by arcade machines made in the 1980s. I heard laser beams, machine gun fire, electromagnetic pulses and flame throwers. My imagination was also helped by the fact that an MRI looks like a time-machine or an object brought back from the future.

I was able to use the MRI sounds to fuel a quick session of healing imagery. Mediation and healing imagery are recommended by nearly every cancer support network under the sun. You can use your mind to boost immune activity and your body's natural anti-inflammatory response and this can strongly compliment orthodox medicine. Sounds wobby-wobby, but no modern oncologist would disagree.

So, I imagined myself in a space ship, jumped down my throat, blasted my way to the stomach, duodenum, through the jejunem and out the illeum into the colon. I slowed down when I got to the colon because I knew the tumour would be near by. Once within range I incorporated sounds from the MRI, warmed up the spaceship's lazer beams and began zapping tumour cells in their thousands. 

When the MRI shifted to a low pitched banging (imagine over and over again the sound a bowling ball makes when it hits the lane), I warmed up the electromagnetic pulse gun and started firing waves of natural killer cells at my tumour in time with the 'music'. 

When the MRI switched to a high pitched and faster beat, I imagined it was the siren on top of my spaceship alerting macrophages that it was time to clean up this tumour once and for all.

As the MRI was scanning my pelvis and looking for breaches of the colon wall, I was busy zapping away at my tumour and drawing mental attention to the area in a kind of call-to-arms for my immune system.

I started meditating the day after my diagnosis. Meditation is relaxing and aids the body's immune system, it also changes the way our brains are wired. The use of healing imagery in meditation helps someone with cancer feel more in control of their illness, and anything that reduces helplessness increases the chance of survival.

How I see my tumour under attack

I was a jerk before cancer too

But I am sometimes a Mega-Jerk now.

Cancer changed everything in an instant. The point that it happened is easy to remember. It was after this sentence: 'Ben, we found what is likely to be a malignant cancer'

[Boom -- Snap -- World View Warp]

and before this one: 'we will have some pathology results back in three days'.

I'm not special, having your world view changed by a cancer diagnosis happens to nearly everyone that faces cancer. So I won't go on about it here. What I will talk about is how this warped world view can affect the people around someone with cancer.

I sometimes go through all of these in an hour

People with cancer feel alone. I have cancer, and as much as my Mum wants to take the cancer from me, she can't. I am the one with the tumour. It is mine, in my body and mine to fight. This makes people with cancer appear selfish because only things that help them fight cancer become important. Everything else becomes unimportant.

Things that have become unimportant:

•  Post-it notes
• Answering my phone
• The weather
• Sweeping the kitchen floor
• Newspapers or news in general
• Putting dishes away
• Replying to text messages
• Other people's needs (that's quite a broad area of disinterest hey)

You can see how that last point may affect those around me. To make this easier for people I have developed a series of witty sound bites when confronted with something on my 'Things that have become unimportant list'.

Examples of using humour to combat cancer:

'Mum, I can't sweep the kitchen floor because I am too busy trying to STAY ALIVE'

'Tim I am stopping this meeting early, I need to go for a run. Exercise fights cancer. You want me to live, right?'

'Fighting Cancer isn't on your To-Do List is it, idiot?'

'Sorry for making a mess...and for having cancer'

The items on my to-do list have changed considerably