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.

I read your blog

Ring ring.
Hi, Ben Bravery speaking. 
Hi Ben, you don't know me, but I read your blog...

The call was from Canada, the caller Canadian. I didn't know him but he was learning about cancer from my blog. He found a link to the blog from a friend's social feed.

This blog of mine gets a nice number of hits every day. I'm sure most of those are a select few people checking the page every 32 minutes, but a great number of people from a great many countries still check the blog regularly. I would love to know who it is in Panama and Thailand and Argentina.

I started this blog as a way to reach out. I got the idea after reading some studies into the effect of social connectedness and cancer survival.

We are, after all, social

Did you know that just the mere fact of joining a cancer support group can improve your chances of survival? And the more you attend that group the longer you are likely to live?

Did you that know that people who can name close friends with ease are more likely to survive cancer than those that can't?

You don't need to be in the same room as your supporters either. Connections made through social networking sites, email and the web may be just as good at helping you live longer.

So thanks to my caller from Canada, you made my week and boosted my immune system.

3, 2, 1...

My long-course chemoradiation therapy is ending. In two days the pelvic party comes to a close and I begin eight weeks of rest and recovery.

The doctors are happy with how my body has responded; I am happy with how my mind has. The FU! and ionizing radiation have taken turns changing my body, but overall I have been able to go about life relatively normally.

Changes over the last six weeks

• I developed an aversion to the thought of cooked mushrooms and organic cafes
• I have had the world's longest cold
• I stopped eating anti-oxidant rich foods after advice from the hospital
• I developed some mouth ulcers
• I go to the toilet a minimum of 6 times a day and each time is louder than the last
• I woke up with the tube connected to my PICC line tangled around my head at least once every night
• I broke out in cold sores
• I was very tired at times
• I threw up
• My bot-bot crack feels like it is actually cracked
• I don't really get hungry any more
• I had some spasms in the arm that has my PICC line in it
• The thought of sourdough makes me nauseous
• I lost my sense of taste a little and now crave Italian food
• My digestive system got angry and caused me pain

I'm clear of all the big-ticket side effects (my bot-bot is still working for example) so I can just expect more of the above. Side-effects are expected to peak one week after treatment ends, and this seems to be the case for all radiation treatments.