So, what happens AFTER someone in your family gets a cancer diagnosis? It is quite literally like you are standing neck high in the surf as wave after wave hits you. You have no footing; you are thrown about and dumped by huge waves. For us, Norman started chemotherapy 8 weeks after the initial diagnosis. I understand that is quite a long time in the cancer world.
Those 8 weeks between his diagnosis and starting chemo were the most traumatic weeks of my life, to date. Why so traumatic? That is when you make the decisions that will affect the remainder of their life. Of course, it isn’t presented to you that way exactly…there is a lot of vagueness and not much information. I share my frustrations by describing the cancer world as a place of smoke and mirrors.
In our case, it was difficult to get honesty from our medical professionals. Luckily a friend who was a breast cancer survivor spoke frankly to us, “Norman needs to see his mother, his brothers and sisters, and his children before chemotherapy starts. There is no way he will be able to take a trip to Nicaragua once he starts chemo”. Just to clarify, it’s about 36 hours one way from Perth to Managua, the capital of Nicaragua.
It took our oncologist a week to firstly accept our calls (they usually will only speak to you during appointments) and then to agree that he could go to Nicaragua.
His warning to me still rings in my ears; “Norman goes at his own risk. Ariana, you need to be prepared that he might never come back. His cancer might flare-up over there”.
As if you weren’t scared enough!!!! Its so frustrating – they are unwilling to step outside of narrow prescribed views of the world. They don’t provide you any guidance at all… and that further adds to the stress. If a doctor who has years of experience can’t guide you… who can?
The Nicaragua Protests of 2018
In our surreal world, after 20 years of peace, Nicaragua had been struggling with massive protests since late April. The worst of the protests, with people battling on the streets, directly coincided with Norman’s diagnosis. If there is another memory that I have of his diagnosis it was that he sat lethargic, in pain, glued to his phone watching live videos of street battles in his home city. History now refers to that period as the Nicaraguan Protests of 2018-2019 – with over 350 people killed and many people unjustly held by the government. Norman’s friends would send private videos of gun battles from the streets where he lived. His devastation at the mess in his country equaled his confusion with his own diagnosis.
Norman made it to Nicaragua in early July. He had to pass through 30 armed barricades from the airport to his home town of Granada. It sounds atrocious –and it is – but that is the reality he had known as a child and one that the Nicaraguans still know now. Norman was inspired by a woman who had cancer manning the barricades. We talked about him staying, of joining the uprising, of our hope for a Free Nicaragua.
It was whimsical, crazy, romantic but if he was going to die, why not die doing something that mattered?
Yet, there was a 20% chance he would survive one year, and we took that chance. Norman didn’t want to do chemotherapy, I didn’t want him to either.
But… despite our misgivings… he flew home to start chemotherapy and proved the doctors wrong, that he had the strength to withstand a trip to the other side of the planet.
These posts are a cathartic review of events for me; but I also think that maybe someone will have some different ideas after reading them, it could help them have a better outcome than we did
What we did which was good:
- Follow our intuition and have Norman visit his family in Nicaragua.
- Keep his diagnosis a firmly held secret for as long as possible.
What we did which could have been improved:
- Understanding that we were in control, as difficult as that was to broach with the medical professionals. We found out we were in control too late.
What Could Help In Those Initial Weeks Post Cancer Diagnosis
- In an ideal world, you would get daily counseling from professionals.
- You would have a cancer expert and coach that sits outside the medical system to help you navigate all the jargon.
- They would tell you to immediately stop your life and start working on your cancer life. You’d need a lot of counseling to understand why that is so important.
- You’d go to a health center that focused on getting the best nutrition, meditation and de-stressing. Instead you are racing around in a frantic state; more stressed than you have ever been. That can’t make your cancer shrink… in a totally unproven statement, I feel that cancers thrive on stress!
Our lives were never normal; Norman’s illness was far from routine. It wasn’t bad enough that he had a terminal illness, his country had dissolved over the same weeks that he got the diagnosis. I still think of the Nicaragua protests as being synonymous with Norman’s pancreatic cancer.