“Thanks for coming in.

You have something called Neuroendocrine Cancer, we don’t treat that here- you will be referred to the Centre of Excellence… you know, it’s pretty late, the clinic is over.

Good luck to you. Goodbye.”

I was then ushered out to the corridor and left alone as they locked up and left. I was in shock.

My head was swimming.

What kind of cancer? Am I dying? Is it treatable? What’s going on?

It was excruciating.

Living with neuroendocrine cancer has been full of unpleasant surprises, so it’s not all that odd that it would have started with one.

–

For several years, I had been complaining about the world’s worst diarrhoea, flushing, and general unwellness. I was dismissed, accused of “bowel obsession”, and told I had Irritable Bowel Syndrome (IBS), which I wouldn’t have if I’d lose weight. No one took me seriously, . . .

. . .but I knew something was wrong, I could feel it. I kept getting referred back to the same Gastroenterologist who dismissed me.

I still can’t believe that the healthcare professionals I saw, felt that they had really behaved as they should. I made a complaint, but the doctor chose to retire, and the complaint was closed.

I finally managed to get referred for a colonoscopy, which showed a large tubulovillous (mushroom shaped) lesion right where the large and small intestine join. I knew as I saw it that I was in trouble. I’ve been a nurse for a long time, and lesions that look like that are never a good thing. I was convinced I had advanced bowel cancer and would die. But I didn’t want to upset my husband, so I didn’t say anything. I figured if it was what I feared it was, a couple weeks of blissful ignorance would be a blessing. When I got a phone call that the consultant wanted to see me at 1600 that afternoon, my heart sunk. No one needs to see you urgently when nothing is wrong. I asked the secretary if I needed to bring anyone with me- she said, “Well, he said to discharge you after this, so I’d say no”. I brightened a bit- maybe it wasn’t as bad as I thought. Famous last words, huh?

–

Over the years with Neuroendocrine Cancer, I’ve become accustomed to the unexpected.

Voila! You have Exocrine Pancreatic Insufficiency.

Tah-Dah! You have a Gastric Ulcer!

What I wasn’t prepared for was a letter that said, “Your disease is incurable”. I’d known it was. I’d had surgery, they removed the impacted lymph nodes, and now it was back. Like I said, I’m a nurse and I know how things work. I knew I wasn’t getting better. Still, seeing that letter was a shock. The letters flashed like neon lights.

Incurable. Incurable. Incurable.

It’s quite the word to get your head around.

Incurable.

The cancer is never going to go away.

Incurable.

It’s going to kill you.

Incurable.

Things will get worse.

Incurable, incurable, incurable.

It took me a while to catch my breath.

My husband asked me what was wrong. What do I say? Do I tell him the truth? More “blissful ignorance”? After the initial results, I confessed my bowel cancer fears. My husband made me promise never again to hold anything back. I handed him the letter. He read it, and when he put it down, he had tears. “How long do we have?”

I explained that incurable wasn’t the same as terminal, so it wasn’t necessarily killing me, but it meant I would never be cancer-free.

He said, “We can do this” and hugged me. . .Somehow, I guess we will.