The return

Returning to the place where my tumour grew is confronting. It was five months ago that I left Beijing on a five-day trip back to Australia to get a visa and have a quick colonoscopy. I didn't get the visa, and the colonoscopy was not quick.

Cancer feels like one giant teacher hurling lesson after lesson straight at your heart. Once back in Beijing it was the little things that got me. A half used candle beside my bed. The scarf hanging on my door. Pictures of me taken during more innocent times, unaware of the disease inside.

Like all lessons it came to a close, the feelings didn't last long, and I was able to ride that Beijing Energy again.

I've ridden my bike all over town. I've eaten fresh stir-fried vegetables. I've spent time with clients and former colleagues. I've spent time with staff and potential staff. I've spent time with friends and friends of friends.

I've also caught up with my dearest friends here, the kind of relationships where the sheer flow of no-strings-attached generosity threatens to swallow you whole. I am so lucky to have formed the bonds I have here in China. This trip has been more positive than negative, more healing than hurt.

If China did give me cancer (as I know many think), this country and the bond between me and some of its people will also help me to heal.

Things can be easier to handle when you know you're part of a group

Handicapable

When you have cancer you have to do so much more than the average human just to stay alive. Forget about competing with the average human for wealth, celebrity, status and knowledge, just matching their being alive takes a great deal of focus, money and time.

Studies have shown that certain foods and ways of living can minimise the chances of cancer spreading or returning once it leaves your body. Once I found out I had cancer I tried to incorporate lots of these into my new life. This was important to me because 50% of people with my type of cancer get more cancer (despite surgery and chemotherapy).

I need to drink pomegranate juice every day. I need to eat 1 to 3 grams of turmeric. I need to exercise at least 5 METs. I need to meditate at least 30 minutes per day. I need to have a massage at least once per week. I need to talk to other cancer patients at least once a fortnight. I need to juice vegetables and fruit twice a day. I need to drink at least 3 cups of green tea, 1 cup of dandelion tea and 1 cup of white tea. I need to eat 1 apricot kernel for every 10 pounds of body mass. I need to add black pepper to everything. I need to drink black thick potions of boiled herbs, aloevera juice and olive leaf extract. I need to take my multivitamin and mushroom pills. I need to eat fibre, but not too much. I need to keep a diary. I need to record 3 good things that happened each day. I need to eat almonds and berries. I need to drink vegetable extract and apple cider vinegar.

And all that is just to help my body heal a tumour so I can be more like the average human again. Talk about a handicap.

Incorporating regular massage into my life has been relatively easy

Music with my therapy

I like walking the halls of my hospital because the walls are full of information. Signs about services offered, support group meetings, hospital policies, research done and research being done punctuate the hospital like needle pricks on a cancer patient.

The walls showed me one day that I could take part in a music therapy study.

Calling all patients

The study required me to write a song, about anything, and answer a bunch of surveys along the way to see how the act of song writing may improve my wellbeing.

The music therapist leading the study is one of the most energetic and caring people I have met. She is a true healer: you can see it in her eyes and hear it when she sings.

Because she is such a nice person, just hanging out with her could make me feel better about life. And so the study needed to also work out whether the song writing itself has an effect over and above that of the nice therapist.

The randomised control trial (RCT)

The RCT is the backbone of health research. It is the thing doctors ask for when people say "my red crystal healed my tumour". The RCT produces evidence that the factor you measured was actually the factor being measured.

In a nutshell a RCT is based on groups that are selected randomly (the R) to receive something (a drug, song writing session, haircut). The other important part of an RCT (the C) is that some groups do not get the drug, song writing session or haircut.

I nominated to take part in the trial (for non-human animals you just reach into the cage and pull one out) which means there may be something about me and my personality that could affect the study. Maybe I am really musical? Maybe I have written songs before? Maybe my (healthy) obsession with Britney Spears means music will more easily boost my immune system?

The song-writing group got to spend three sessions with the music therapist writing a song. During this time they also listened to guitar, sung, and laughed and cried. These things may improve patient wellbeing. To work out if actually writing a song helps, you need a group that has all those things, but without the song writing. This was the control group.

I went into the experiment wanting music therapy and this desire has the potential to influence the outcomes of the study. So whether I got to write a song or be a control (ie. do nothing) needed to be decided randomly.

I was randomly allocated to the control group

The music therapist didn't know which group I would be in. She was handed an anonymous envelope by one of her assistants that would never meet me or learn my name. The assistant had used a computer to allocate me an ID number and group. The therapist handed me the envelope unopened. I had to open it in front of her and inside it gave me a number and a group. These may sound like CIA protocols, but they are all needed to control bias and ensure that song writing is actually the thing being measured.

So, I sat with the music therapist over three different days. We had instruments in the room and she played these sometimes. We talked about cancer and life but we didn't write a song or talk about song writing.

After the study was complete, I still got to write a song anyway

I got to do this because she believes in the ability of music to heal. Her bias is an example of why the CIA protocols are necessary and how a control group that doesnt write songs accommodates for that.

The song is called 'Ben be brave' and was recorded. It will appear on this blog soon.

The Underwear Affair

Bringing awareness to down there-ness: that's the slogan for the Ottawa Regional Cancer Foundation's Underwear Affair.

The Foundation's creative genius didn't stop there. They then designed an underwear-only 10k running event. Yep, everyone running in their undies.

Brock: a Canadian with a Cause

The event asks people to 'Get caught with your pants down' and has pictures of people wearing tshirts that identify them as part of 'The Rollin' Colons'. You can also pick virtual wedgies.

My Canadian Caller, Brock, is going to take part in this event and do so in my name. Brock is always up for trying new things, but running is not normally one of them. This makes it extra special. Before training for this event Brock's longest run was from his kitchen to the loungeroom. Now he is running 2km, 5km and 6km training sessions. Go Brock.

You can support Brock in his bum-run (get it? That's a play on fun-run I just invented) here.

Know of a bowel cancer awareness event in your local area? Please share it below or email me the details.

Who doesn't like partial nudity and running?

Local mess, distant bliss

The Big Three confirmed again that my cancer appears to have not spread beyond the single tumour in my pelvis. Hip hip hooray.

The Big Three also showed that my tumour appears to have had its volume reduced by about 80%.

The surgery is a tricky one

And may require the removal of my right seminal vesical (likely) and bladder (unlikely). The trickyness is because the Big Three do not produce perfect images and so the surgeon will not be entirely sure what the tumour is touching and by how much until inside.

The surgeon has requested another big-wig to stand in on the operation so the two of them can assess the situation and bounce ideas off each other during surgery.

Cancer is one long exercise in percentages and risk 

You have a X% chance of living in the next Y years. If you have X therapy you are likely to improve these chances by Y%. You have a Z% chance of developing side effect A from therapy X. If side effect A develops, it then goes away in Y% of people. However, because you developed side effect A you have a X% chance of developing condition Y in the future.

These percentages are comforting because they allow patients to understand the big picture and the benefits of a therapy. But all rational decision making goes out the window when you are told there is a chance you could wake up from the surgery without a bladder.  The surgeon’s words become a blur and you simply here the phrase no bladder. No bladder. No bladder.

These moments pass though. Good doctors are able to recognise when a patient has become fixated on a particular side effect and then start steering them back towards the land of the rational.

The need to hide from it all doesn't last long

Animals get cancer too

By Luo Jian, Indiana, USA

I came to know Ben at Datian National Nature Reserve on Hainan Island in 2007 where I worked as a volunteer. Ben has been one of my best friends ever since.  I’m now a pre-vet student at Purdue University and will start vet school in August. Ben asked me to talk about my volunteer experience in the Oncology Department at Purdue’s Animal Teaching Hospital. This experience has helped me understand and relate to Ben even though I am very far away!

Cancers in animals are not that different from cancers in humans. 

It is one of the major causes of death in animals too. And cancers in animals are also caused mostly by mutations in genes, which take time to develop as in humans. That’s probably one of the reasons why many of our patients are between 9 and 12 years old (average life span of a dog is 12.6 yrs). The Oncology Department not only treats animals, but also does research and clinical trials as in a human hospital.  Surprisingly, the clinical trails and research we are doing can potentially benefit humans because some forms of cancer mimic those in people. 

Animals get similar tumors to people such as lymphoma, sarcoma and carcinoma. The diagnostics we use mirror what Ben has been though, including physical exams, measurements of tumor sizes, aspiration, biopsy, ultrasound, CT scans (animals have to be anesthetized for CT scan, we can even perform CT scans on horses!) and PET scans. There are also some other types of examination: I once witnessed a rhinoscopy for a nasal tumor - experience of a life time (for me and the dog)!

Cancer treatment in animals includes surgery

Treatment can also include chemotherapy or radiation therapy (but animals have to be sedated for radiation so they don't move around). Drugs can be given to some patients as well. The results of these treatments are very good.  Our Oncology Department has helped many animals extend their life and helped some animals enjoy two or more years with their family after treatment. This may not sound like much, but consider what it means for a dog whose life span is only 12 years to begin with. 

My favorite parts of working at the Oncology Department

• Rounds: first thing in the morning doctors and technicians discuss patients’ medical history, current condition and future diagnosis/treatment. Doctors also use this time to write cards for owners whose pets have passed away.
• Medical procedures that I get to witness and participate in.
• The patients! They are so optimistic and enjoy the life they still have, to run on the grass, to wag their tails, to be bathed in sun, to have their belly rubbed and be cuddled. The tremendous trust they give us gives me tears.
• The doctors and technicians are so knowledgeable, extremely kind and actually bond with the patients. One of our doctors shed tears when hearing a patient died the other day. 

I’m less worried about Ben after working in an Oncology Department, albeit an animal one! There are many treatments and much progress in research/clinical trials. Most importantly, Ben has his family and friends and dedicated doctors and nurses who really want to make him better. I believe their efforts will not be in vain and now I just wait for him to get better!

Managing expectations

Back at the hospital after a month free of needles, canulas and hospital gowns.

The Trio of Tests or Big Three as I like to call them were completed yesterday. In the space of four hours:

• I consumed radioactive sugar then had a sleep (for the PET)
• was injected with contrast solution that made my mouth feel like I had eaten felt pens for lunch and made my groin feel like it was on fire - and not in a 'Oh yeah baby' kind of way (for the CT)
• spent a half hour doof-doofing inside a plastic coffin (for the MRI)

'Good luck on Tuesday! Are you looking forward to the results from these tests?'

No. These tests are sort of formalities, and in fact, some hospitals don't even do them after chemoradiation treatment. These scans will only change the course of treatment if the tumour has disappeared entirely (unlikely) or the tumour has spread to other parts of my body (highly unlikely).

At best, the images from these tests will tell the medical team how likely it is that other organs will be affected by my surgery (remember that my greedy tumour attached itself to my rectum and is sitting next to my seminal vesical).

Interpreting these images is not straight forward either

Parts of the tumour could have died during chemoradiation therapy but still be present, so they will still show up on the CT and MRI. And the radiation therapy can cause inflammation around the tumour and obscure the resolution of the images. 

Once again, the full scenario won't be known until the surgeon is inside and can take a look around.

Colons up close

This story aired on the ABC's Catalyst program last night and is a great overview of bowel cancer. See a colonoscopy and colon re-section in action.

Tumour-free Tourist

The blog went quiet and I'm sorry if people assumed the worst. I just needed some time away from having cancer so I headed north to attend a wedding in Queensland, see my family for Easter and hang with my Sister in Sydney.

I'm back now and over the next week will publish words on:

• Animals get cancer too: life inside a veterinary oncology clinic
• I like music with my therapy: writing a song
• Trying therapies: does it really hurt to try therapies not supported by clinical evidence?
• The Underwear Affair: Running for bowel cancer

People expected me to be pale, bald and gaunt. Side-effects hit everyone differently. Here I am in Sydney with my Sister looking more like I just stepped off a cruise ship and less like I just finished chemoradiation therapy.