02
Feb
2018

Deborah's bowel cancer story (diagnosed at 60, WA)

I am 61 years old and was diagnosed two months after my last birthday. After surgery and histology I was diagnosed at T1 N0 M0.

Finding the cancer was completely serendipitous. I went to my GP mid-August complaining of indigestion and she prescribed some tablets and said I needed to go for an endoscopy to find out if there was anything else happening.

While there, she suggested I might as well get a colonoscopy. I booked for both and got an appointment at the end of August.

I looked at the prep for the colonoscopy and thought, “Ew, that’s not nice.”

Half way through the prep I thought, ‘Why am I doing this? I don’t even have any symptoms’. My daughter jollied me through finishing it all.

I did both tests - top end and bottom end. The reports and photos were handed to me as I left. I spent the next day Googling every single word.

One phrase on the bottom end report caught my attention: ‘a 25mm distal transverse colon polyp….at one end there was an area of nodularity that seemed ulcerated’.

By that evening I knew I likely had a journey to take - I just didn’t know how what that journey it would be.

The histology report got to my GP within 36 hours. That ulcerated distal transverse colon polyp? – ‘high grade dysplasia…occupies approximately 20% of the polyp… invasive adenocarcinoma’.

Here we go.

Much to my incredulity, for such a small tumour I was recommended to have such a large surgery – an extended right hemicolectomy, losing 2/3 of my bowel. It’s like taking an elephant to kill an ant, I thought.

But, but, but…the tumour is so small and it’s costing so much bowel!

But, but, but…’no lymphovascular space invasion identified’ so why do you have to take out all those lymph nodes?

But, but, but…can’t you just do something in situ?

And so on and do forth for a few days. My sister’s ex is a GP and he scoured the world for me. Surgery is the only answer, he said. I think he knew that already, but was just being super kind.

I had an extended right hemicolectomy mid-September and ‘luckily’ lost only 40% of my bowel. The CT scan had shown that the polyp was in a more accessible place than originally thought. I took that as a win.

All 11 lymph nodes came back clear. I took that as a big win.
Surgery is it for me for now.

I had no complications from surgery, just the usual side effects of any surgery, and the usual side effects of losing a big part of your bowel. I needed pain relief for a few days. I walked around the ward then outside every day, and that helped a lot not only with getting things moving but with my mood as well. I went home on day 6 after pooing The Liberator. He was small but very, very tough.

Now if you just consider surgery as ‘the treatment’ then that’s where I would stop.
But because recovery from surgery is only the start of this journey, I consider my nutritionist appointments and physio appointments and GP appointments and blood tests as part of treatment.

I consider that I am still undergoing treatment even if self-organising.

Bowel Cancer Australia Nutritionist Theresa has been a lifesaver. You can stop the diarrhoea with mashed red potato; with green bananas; with marshmallows. You need these vitamins and these probiotics. She even answers questions I didn’t even know I had like…you may have a vitamin B 12 deficiency if you’ve had your terminal ileum removed. Feels like ants crawling under the skin in your legs? YES!! I had no idea that was even related!!

I’ve seen a nutritionist privately - here’s a list of high soluble fibre vegetables you can try because you’re desperate for vegetables. And here’s how to try it.

Found an app that lets me record what I eat and what I poo and reminds me to eat to keep a record of this craziness.

To the physio…Are the niggles down my right leg related to surgery? If not, what?
If I don’t adhere very tightly to the eating and food-medicating regime, then I pay for it – painfully. The fourth diarrhoea on a bad day is red hot poker torture.
On other days, it’s ok.

Being chained to certain foods at certain times feels very restrictive and straight jacket. In particular, my husband started a contract interstate in July and I haven’t been confident enough yet to travel over. First ticket booked for December, so I have a goal to get strategies sorted by then.

And most socialising revolves around food. I’m working it out but it’s a whole load I never had to think about before.

Upsides? I posted a big old rant on Facebook once I had the histology back after surgery.
So many people private messaged me with their stories or family stories – stories that they had not shared with me before.

One old friend made sure to call me and spoke for an hour about her ride and suggestions to manage. My nephew’s father whom I hadn’t seen for 5 years visited. A best friend from 35 years ago got in touch with multiple family experiences!

There may be a hereditary component to this so I’ve told my brother and sisters to get colonoscopies. They’re doing it.

And I’m organising a big family Christmas that would not have happened otherwise.
I wish I knew that in the US colonoscopies are recommended from age 50, then every 3-5 years after that depending on findings. If that were the standard here, then my (estimated) 5-year-old polyp would have been found and removed before it was cancerous.

I wish I knew more about the efficacy of the ’poo-on-the-paper’ test and not blindly trusted it. I had done two of them and NAD. But I wasn’t bleeding into my poo, so the test didn’t detect the cancer. Hmmmm.

I wish I knew more about the after effects of surgery and how to manage them. I have had to scramble for information and resources.

Now I tell everyone I know over the age of 50 to push their GP to give them a colonoscopy. Apparently, guys get more colonoscopies because of prostate issues but we gals miss out on that.

I would also encourage anyone facing a bowel cancer diagnosis to research and hustle and push for information on how to handle your condition post-surgery.

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