When you get a cancer diagnosis life as you know it ends then and there. You enter a parallel world where the life you knew goes on around you, but you live in the corridors of hospitals, in waiting rooms, and in the glare of bright lights. Living with Pancreatic Cancer or a partner that has received a Pancreatic Cancer diagnosis so difficult.
Your workmates still go to work, your kids go to school, but you go to doctors’ appointments. Endless appointments. When you go home, you research. You follow-up leads. Most of them end in dead ends. You keep up your social life, you go out with your friends; I remember some of those evenings and everything would be a complete blur. However, in retrospect, it was preferable to the isolation that came from when people didn’t know.
Norman cutting firewoodA Parallel World – Living With Pancreatic Cancer
We kept Norman’s diagnosis secret for as long as we possibly could. I still don’t know who let the cat out of the bag. Then the advice comes flooding in; 99.9% of it was not even related to pancreatic cancer but people are so well-intentioned. We stopped mixing almost completely once people knew. It was all too hard, it was all too painful.
I still think those first couple of months were the most difficult in my life. Everything went on around us, except we were in a totally unwelcome and frightening place. We grieved the loss of our life; because this new parallel world was not “our” life.
Clowning aboutI remember parking across the road from Norman’s work in the early days after his diagnosis. I felt so much pain in my rib cage, in my heart, and I sobbed as my heart screamed, “Please let him go to work again.” He loved his work, the idea that he might never go back was monstrous. Horrific. Dark. I’d sometimes see his colleagues driving somewhere and I couldn’t help but feel bitter and envious. They didn’t know how lucky they were.
I liken it to being on ice – your feet are going every which way around you and you can’t get your balance. In those first weeks, we’d get hit with some new piece of information which would send us sliding, spinning helplessly out of control. It was like being dumped by a huge wave when you are held under the water and you freak out because you can’t get to the surface and you can’t breathe. Then, finally, you pop up disoriented.
Norman and his sense of humor wanted a picNow, 6 months after his death, I am a little less angry. However, I wondered what the point was in sharing our stories. Then a friend of a friend’s parent got diagnosed with Pancreatic Cancer. Our mutual friend connected us and I realize that there is always value in sharing our story. Even if the reader gets one tiny piece of help from our experience, it will be worthwhile.
I’m going to talk a lot about navigating the medical system in a future post, but for the moment, from the very first day you learn that “You might have cancer” these are the things I’d recommend doing.
What You Can Do To Control Your Cancer Treatment
Get A Notebook
Write down your questions. Write the answers. Write your contacts. In our experience the medical professionals got things wrong more than once. They were never bad people, just busy, and Normans was a complex case.
You Are The Manager Of Your Own Treatment
Don’t trust that they will coordinate it like you can. Take responsibility from the beginning – this includes going for treatment outside the medical system.
Ask For A Second Opinion – And A Third Opinion
This is the difference between LIFE and DEATH. Don’t let supercilious – or even humble – doctors tell you that there are no other options.
There were many moments of contemplation.Keep Copies Of Your Own Records
This became extremely important later on. In Australia, you don’t own your own medical record and the different states seemingly can’t communicate. Even different hospitals don’t share records. You need to have your own record, in your hands. This means meticulously taking copies of everything at every appointment.
Get Some Beautiful Photos Taken Before He Gets Too Sick
We had an amazing photo shoot with the awesome Nic Duncan and these photos are so valuable to us.
Take Photos Of The Treatment And Of Him Being Sick
As you can see from the photos on this page, we only took pictures of him being “happy”. He was in a lot of pain even prior to diagnosis and often in bed for many hours. I look at these pictures and I can’t remember the bad things that well. I wish I had more pictures to remind me just how sick he was.
This is a tiny little reminder that he was sick.Listen To Your Intuition! I Repeat – Listen To Your Intuition
If something sounds wrong to you – then listen to it. If you don’t feel the suggestions are right for you- say so. Don’t understand the terminology – ask again! Don’t EVER leave that doctor’s appointment until they explain to you what is happening. Follow what feels right to you. That is the right decision.
Photo by Nic Duncan. https://www.nicduncan.com/Read Our Other Posts About Living With Pancreatic Cancer
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Like It> Pin It> A Parallel World
I’m in tears. There is so much truth to your words and yet this truth isn’t known (perhaps for the best) by most until you are forced go through a similar experience.