20
Jul
2010
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Peter T's bowel cancer story (diagnosed age 43, NSW)

I was diagnosed with bowel cancer (T4 N1 M0) on the 3rd June, 2010.

I went to my GP after I noticed bright red blood on the toilet paper and was booked in for a colonoscopy four days later, which is when they found the tumour.  Within 10 days of my diagnosis I had blood tests, a CT scan and two MRIs.  I saw two gastroenterologists, three colorectal surgeons and four oncologists. I researched hospitals, services and care teams. 
 
My gastroenterologists told me I had a tumour that looked cancerous as I woke up from the colonoscopy. 
 
Even while I was still under anaesthetic, he had booked me in for a CT scan across the road that afternoon, called my wife back from shopping, told her the bad news and made a priority surgeon's appointment.  When I awoke he said, “you are lucky your GP sent you.  The tumour is low.  You need a really, really good surgeon to cut this out.  Who are you booked to see?”  I knew it was serious when he gave me his mobile phone number and said “call me if you have any questions or need to talk”. 
 
I made a difficult choice and started a five-week course of radiation and chemotherapy (5-FU) via a port.  The tumour and my obese body needed to be shrunk to make surgery and recovery more effective.  One of the surgeons smiled and nodded - “yes, losing weight will make the operation easier for me and the recovery better for you”. 
 
The pain from my particular side effects has been unbearable and I thought I was pretty tough.  I would not wish this illness on my worst enemy, not that I have any. It's been a real wake-up call and lots of things have changed in my life, especially my diet and exercise.  I know that what I do from this point forward makes a difference – and not just to my life, but to those of my wife and our two beautiful children.  I have been looking after the kids during the school holidays and have taken them to St Vincent's to see the chemo ward and radiation machine in the basement.  They know what bowel cancer is.  That I have it.  That I may die.  Most importantly they know that I have started treatment and I am fighting.
 
I managed to get away with friends to Alice Springs between the treatment to shrink the tumour and the surgery to remove it.  The trip involved camping, bush bashing and strapping solar panels to the roof of the 4WD so I could power the juicer and all the other equipment to keep me well.  I also spent a lot of time under the stars at night due to toilet trips - that radiation really is a pain in the butt!  Managed to roll the car while I was out there but the solar panels held up well.
 
I've had the surgery now - 25th August - my birthday.  And I've lost 33 kg in just over four months.  Amazing.  Never going back to junk food.  I had been obese for most of my adult life, struggling to lose weight for years and failed.  Ironically I now look and feel much better, except for the pain.   Unfortunately my favourite restaurants are all missing me as much as I miss them - I hope they can stay in business.
 
In different ways I've been impressed by all the nurses, doctors, hospitals and our health system.  I never before appreciated what our taxes had helped build and keep running.  It’s amazing what I took for granted.
 
I’ve been really impressed with my surgeon who said “we are going to cure you”.  He seems like he really wants to do the right thing by me and is willing to answer all my questions.  Specifically he recommended a second colorectal surgeon to assist him because I am such a big guy, which Medicare does not cover.  I agreed without hesitation  Then afterwards he petitioned Medicare on my behalf to cover the procedure.  Apparently this is standard in the UK where he comes from. 
 
Then he sent me for a second MRI because the first MRI was not clear.  My tumour went from a T3 to T4, but at least we knew they were irradiating the correct area.  Then that afternoon I had an appointment with the medical oncologist and had the chemo port installed.  The speed of the procedures really impressed me.  My oncologist said we have two challenges.  The first was to the shrink the tumour and the second was to stop it spreading.  I appreciated her honesty.
 
If there’s a positive side to any of this, it’s that my family and friends are now very aware of the dangers of bowel cancer.  I’ve begged them all to get check-ups because it really could happen to anyone.  There’s no history of bowel cancer in my family.  My wife has been great and is running our business and managing the family somehow.  The arguments we used to have just stopped and we are really united now. 
 
I had been regularly donating blood, plasma and platelets (which helps cancer patients) for over a decade.  The blood bank cannot use my blood any more so if someone can take my place it would be appreciated.  I have many medical wishes, obviously to be cured.  Another is one day there will be a blood-based bowel cancer screening test that maybe integrated into the blood donation system.
The support my family has had from our family, friends, neighbours, preschools, schools and my scuba diving club has been overwhelming.  Everyone has been so positive and kind to me and has really helped at a practical and emotional level.  My daughter's school principal even called in the middle of the school holidays to see if she could help.  My scuba diving buddies have been visiting to take me for walks so we can get healthy and talk.  I have been a passionate underwater photographer for the last decade.  Obviously I can't go diving with a chemo bottle attached 24 hours a day 7 days week but I cannot wait to get back underwater.  Six months of chemo to go.
 
The greatest irony is that I had a bowel cancer screening kit sitting in our bathroom for four months before diagnosis but never used it.  I never got the three days of healthy dieting required to use it or I was away on holidays.  I truly regret that delay and it haunts me now.  It may be the most costly mistake of my life.  I’m willing to do whatever I can to get this message out there.  I'm not sure what it will take but I am willing to give anything a go.
 
My advice is we all need to make bowel cancer screening a priority.  Maybe you could send someone you love a screening kit on their birthday.  It could be the most important present they ever receive because early detection makes a big difference.