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. 

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