Nick Beles on his way to summiting Mt. Rainier, three years after his diagnosis of stage 4 testicular cancer.
By Nan Thomas, Nick's mom and caregiver
My world changed on November 22, 2008, when I learned my 28-year-old son, Nick, was diagnosed with stage 4 testicular cancer that had spread to his lungs. Since then, my view of life has changed. Surprisingly, it’s changed mostly for the better. But, definitely not for the easier.
What, of value, can I share with you – who might, yourself, be a patient in active treatment? Or, maybe your spouse or other family member has just been diagnosed? All I have is my story of being Nick’s main caregiver during his year-long illness and the joy and gratitude of being a survivor’s mother.
Personal Losses and Valuable Gains
Nick, my daughter, my husband and I each lost much during this journey. We struggle with our fears and the hardships of that year. I find it difficult to feel my old sense of safety or to believe in robust good-health.
But, as much as I lost, I gained, too.
- Every day, I’m grateful Nick isn’t in physical pain. It’s something we take for granted – until pain comes to one you love.
- I got to know my son as a man who’s gracious, honest, humorous and brave and who did everything he could to live.
- I learned to find a new cadence of life – which took patience – but taught me to be more present.
- I learned to plan in a new slow way, including taking time with finances, work, food, sleep and medications.
- I embraced the patience to live during, as well as through, cancer. I constantly reminded myself this might be my only time with Nick. And, if that was to be, it needed to be as pain-free, as peaceful and as fun as possible.
- I learned to listen to what he really needed.
- I learned to put away the early shock and busyness. I simply couldn’t afford to stay in those unhelpful places.
- I painfully realized that my job as Nick’s caregiver could not include taking much care of others. I left my husband alone for long periods while I lived in the oncology ward or Nick’s apartment. I left my only daughter with her first newborn – alone in a new town while her husband worked nights at a new job. They were gracious and utterly undemanding – but lonely in their fear for Nick.
Forging Our Unique Roadmap
As Nick and I negotiated our new relationship, we came to our most pivotal decision: He would have to tell me what to do. There wasn’t a roadmap for this journey. I needed his guidance.
He had three requests:
1. Don’t ask me how I am emotionally. I will tell you when I can.
2. Please be yourself, because it scares me when you act differently.
3. Believe it when you tell me, “You are going to get well.” If you don’t, I’ll know. And, then I’ll doubt it, too.
Advice for Caregivers
My best – and really only – advice for caregivers is to listen more carefully than you’ve ever listened before. Not just for what to do, but listen for what not to do.
During low-dose chemo, Nick wanted to live in his downtown Seattle apartment and walk, every day, up the long hills to the hospital for treatment. One of my friends was beside himself, advising me to insist on being there to keep him safe.
I knew Nick might need me more later on, when his treatments became more aggressive. It took all my will to let Nick make those long walks up the hills of Seattle by himself.
Let the Patient “Drive”
One day, after Nick, my husband and I had a particularly frightening appointment with Nick’s surgeon, we walked to the car utterly shell-shocked. We stood beside the car and just looked at each other.
Then my husband asked Nick, “Do you want to drive?” and Nick, as usual, said yes. The symbolism of that question wasn’t lost on any of us.
“Letting Nick drive” and live alone to walk to chemo, wasn’t what I needed. But, he was wise and honest enough to tell us it was what he needed. He needed to stay in control of his life, to stay independent and competent for as long as he could.
Let the Plan Evolve as Circumstances Change
Later, during high-dose chemo, things changed. I told Nick I’d honed my mission statement down to only one thing: to not irritate him. To be successful, he had to tell me what he needed and what he didn’t need. We learned to live together peacefully, quietly and humorously during that time – while he fought to live and we both worked to keep his pain manageable.
Celebrate Recovery
I’m happy to report Nick recovered and took his life back. And, now I don’t care if I irritate him – because he is well!
