You can run but you can never hide

“There are no great people in this world, only great challenges which ordinary people rise to meet.” ~William Frederick Halsey, Jr.

There are some events in life that take you on a journey you never expect. When that happens some of us drop off the planet, the rest shout out loud.

I took the first option, hence why it has been been two years since I posted on RoamingRave. Now it’s time to move to phase two and become a self-care ambassador.

I’ve been invited to help create a community where individuals encourage and empower each other to take care of themselves.

WHY ME, WHY NOW

To explain, as a major health issue beset a sibling, it then targeted me. I didn’t see it coming, nor the long road back to recovery.

Sadly my sister didn’t make it. She joins another sibling and our father to succumb to cancer in the past 10 years.

Because of my siblings’ cancer journey I constantly got checked but my diagnosis was very different to theirs. It’s called Neuroendocrine tumours, or NETs for short. This uncommon, some consider rare, cancer develops from hormone producing cells, the symptoms of which mimic lesser conditions like abdominal pain, allergies and fatigue.

Diagnosis is difficult. Carcinoid.org explains it typically takes five to seven years to receive the correct diagnosis because there are many different types of NETs. It doesn’t help that few GPs ever see a patient with NETs over their working lifetime.

In the USA in 2016 there were only 115,000 diagnosed with the condition, far fewer in Australia. And there is no cure.

Thankfully the tumours are often slow-growing, and surgery is an option. So I guess you could say I got lucky. Lucky mine were found, and lucky I was a candidate for surgery.

Like a lot of NET patients oncology wasn’t part of the discussion but when they opened me up from the breastbone to the pubic bone the surgeon found the tumour had spread to my lymph nodes.

That said, there is no “active treatment” for my stage 3b midgut NETs, only “wait and see”. Chemo doesn’t work well on NETs and reserved for those whose stage 4 tumours have spread to the liver, lung or bone. But there is targeted hormone treatment for sufferers of carcinoid syndrome.

So since my surgery in September 2016 I have sat and waited, worked hard on recovering physically, mentally and emotionally and researched the pants off this condition.

Seeking a second opinion, November 2017

Prognosis has improved and patients can live for many years with NETs as a chronic condition. So rest assured, because mine metastasised, I will be checked by an oncologist for at least 5-10 years to ensure there is no recurrence. My “new normal” post-surgery involves six monthly blood and urine tests and an annual nuclear scan.

It has been, and continues to be, a scary ride, made harder by the fact that I look fine. My external scars are covered up and out of sight but the scars on the inside are the ones you can’t hide.

Since being diagnosed I have found great comfort from wonderful NETs organisations such as http://www.unicornfoundation.org.au in Australia and http://www.carcinoid.org in the USA/Canada. Next blog I’ll share my Health Storylines challenge. I hope you will join me.

This post is dedicated to my sister Belinda, who passed away nine months ago. She showed amazing strength of character in the last six months of her life. Her concern for others was astonishing. It never mattered how sick she got, she always wanted to know how everyone else was.

2 thoughts on “You can run but you can never hide

  1. Pingback: Why mind over health, matters | RoamingRAVE

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