Smoke and Mirrors – Our Pancreatic Cancer Experience

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If you have recently received a cancer diagnosis our experience may help you to make you feel you are not alone in the foreign world of “cancer”.

“Hello, this is Jane the cancer nurse from the hospital.”

“Who?” I asked, thinking I’d misheard.

“The cancer nurse from the hospital, calling regarding Norman’s appointment next week.”

Me: “But Norman doesn’t have cancer, we don’t need a cancer nurse.”

Silence, you could cut the silence with a knife.  She backtracked: “Well, they assign me to people who are undergoing investigation for cancer too”.

Smoke and Mirrors - Our Pancreatic Cancer Experience

A Cancer Diagnosis

Welcome to a world of smoke and mirrors – where everything that happens is not as it seems.  If you aren’t familiar with the English phrase ‘smoke and mirrors’ it basically refers to an idea or proposition that at first seems real, but then later (or after examination) becomes an illusion.

Norman getting cancer humbled us; it brought us both to our knees.  We were not the people we thought we were; we were a cancer patient and his caretaker in a system.  Systems are great.  Systems suck.  Whatever happens, learn that the system is your best friend and your worst enemy.  Know all of that and don’t get angry.  Nothing will make sense ever again.  You need to work the system to get the best outcomes for your loved one.

The medical system tells you they are doing their best; they don’t tell you that Pancreatic Cancer is one of the most aggressive and mortal cancers and T4 stage is a very advanced stage.  A Pancreatic Cancer diagnosis is devastating.

READ MORE  The C word: Cancer
Our pancreatic cancer diagnosis story
Camping at Hamelin Bay.  This is the first time I can remember Norman having ‘strange’ symptoms like bad indigestion; later we’d realize this was the start of the cancer growing.

The cancer unit is full of magic realism, it is a place of shadows, where the truth was not the truth.  The staff had a strange understanding that WE didn’t understand, no matter how much we asked.

It was surreal.  Those cancer units deal with life and death every day, and yet they seemed so not phased about the enormity of what was happening to us. They would not (or could not?) give answers.   Not that they lacked empathy or compassion but there is a fine line between a cliché rolling off the tongue and true caring.

To this day, I still don’t understand the ingrained policy of ‘smoke and mirrors’, and their unwillingness to honestly share what they know about the disease and its progress.  Part of the issue is that cancer is, apparently, completely unpredictable.  A prescribed treatment that will work for one person, won’t work for another.  Instead of saying just that, they talk in platitudes and generalities.  They won’t give you an opinion.

Yes, there are mysteries surrounding cancer and the medical system is not here to share that with sufferers.  That might seem harsh, but it seems ethically wrong for them to not disclose the information that they know, as scary as that knowledge might be.

Playing in the trees at Augusta

Most of the time the doctors looked uncomfortable talking about Norma’s cancer diagnosis.  Sometimes even pitying.  Did they pity we did not understand; or did they pity our belief that he would get better?

I remember yelling (yes yelling!) at one of the Oncologists saying, “You aren’t giving us any options”.  Her reply, cool as a cucumber: “I am giving you options.  You can do this chemotherapy regime, or you can choose to NOT do it.”

I think they knew that the real chances for chemotherapy to revert the Pancreatic Cancer were limited, but it was all they could offer.  It was presented as the last hope.

We knew the chances but the lack of options was emotionally devastating.

Come on Dad!

Pancreatic Cancer Diagnosis – Navigating The System

The entire cancer diagnosis and journey was terrifying and the support could have been clearer.  If you find this blog post and feel that you are in the same position, this is what I learned during our Pancreatic Cancer diagnosis and journey:

READ MORE  A Parallel World

Be Humble, Question Everything

They know things that you don’t.  Don’t worry about appearing stupid; make them explain their decision-making.  Take notes of those conversations.

Everyone On The Support Team Needs To Be Your Friend

They can get you appointments when there are no appointments; they know things we will never know.  Every single one of that support team also must be questioned.  They see cancer so much that it seems they are suffering from compassion fatigue, burnout, or something similar.

The support staff doesn’t question anything in the system, they have seen it all.  Ask them to think outside the box.  Yes – the system does provide these support people – but they are PART of the system.  I believe their job is to make you accept your fate best you can.

Find People Who Have Had A Cancer Diagnosis

Find people outside the system who have had cancer, ask them questions, and then follow your intuition.

Ask Questions, Talk, Then Ask More Questions

Don’t let the system’s ambivalence or numbness to cancer dim your fight; there are people who can help, you just have to find them.

After months of being told that Norman couldn’t take alternative medicine with his chemo; we learned that was the “medical opinion”.  We should have gone to see ANYONE for an alternative opinion.  Search ‘Cancer Naturopath’.  In our case we found two in our local city.

We got offered counselors to help with stress, depression and even the questions of life.  If I were to do things differently I would look for:

  • cancer coach -someone who has specific experience in managing the system and cancer treatment.
  • Someone who could help us in questions of death, and preparing for death.

Don’t Get Angry With The System

Persist with it; certainly in Australia where our public health system is free – you need to use that system if you are not wealthy or have private coverage.

READ MORE  A Parallel World

In Australia, if you are a public patient, where you live determines what hospitals you will be treated at.  You won’t be offered any other options.  That means you are stuck with your Oncologist.  If you fight, you can see other professionals in other areas, it just takes some organization.

So, if you are feeling powerless, frustrated and unsure of what is happening with your cancer diagnosis and treatments know that you are not alone.

Please feel free to drop a comment below if you need clarification.  I have only lived the cancer journey once, as a caretaker, so my experiences are limited.

More Cancer Diagnosis Advice And Posts

The C Word: Cancer

A Parallel World

The Importance Of Travel, Or Not

Important:  We met some amazing human beings during our time in the cancer units of hospitals; often they went above and beyond to help us.  This post is intended to question the medical professionals and the system, rather than the individuals.  I honestly believe that sometimes they just didn’t know what to do. 

 

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