cancer support Archives - The Practical Caregiver Guides

There was a time when a Stage 4 cancer diagnosis meant a patient only had days, weeks, or maybe a month or two left of living. But over the last decade, with so many advances in treatments, more and more people are living with Stage 4 cancers.

But what does it take to do that?

For the patient:

1. A great medical team that keeps up with physical issues
2. Good support for daily living, medical treatments, and complications
3. Palliative care that enables the patient to be as active and comfortable as possible, by managing pain, addressing social, psychological, and physical challenges

That makes it sound easy to survive Stage 4 cancer, doesn’t it? As long as you have doctors, nurses, and other professionals on board, it’s a slam dunk. Only it’s not.

It’s also about what the patient brings to Stage 4 cancer. What are you willing to sacrifice to survive? How much work are you willing to put into your effort? And who will be at your side while you do it?

Imagine needing to have ongoing chemotherapy treatments that knock you off your feet. Not only do you have to psych yourself up to get to the cancer center for those, you also have to deal with the side effects (short and long term), the complications, and even the logistics of living with Stage 4 cancer.

Not everyone is willing, able, or capable of undergoing such a rigorous and challenging life. But for those who are, their work as survivors is nothing short of amazing. And every time someone accepts the challenge of living with Stage 4 cancer, we creep closer to the treatments that will one day eliminate the disease.

Surviving Stage 4 cancer means having a strategy, a plan. You can’t just wing it. You can’t just meander through your day. You have to be highly motivated to push on through the sometimes daunting challenges. Is it worth it? That’s a question that only the person with the cancer can decide. If you’re talking about surviving, you’re really talking about living.

To live with Stage 4 cancer, you need to:

1. Engage in meaningful activities that enhance your quality of life
2. Have a sense that you are able to manage the challenges in your life to your benefit
3. Feel emotionally, mentally, and physically connected to people that matter to you
4. Have a team of people who can support your true needs and give you what you need to go on

One of the most important things I have learned from Stage 4 survivors is that what we supporters say and do matters. We need to take our cues from the people who are struggling. We can’t assume to know that magic pill that will make it all better.

— It’s not our job to push treatments or give advice. That’s what the medical experts are doing, and they have far more experience in the field than we do.

— Good listening skills are important for supporters of Stage 4 cancer survivors. Recognize the need to vent when things go wrong. Understand the emotions that are strained and realize the toll of the physical, mental, and even emotional challenges of being a Stage 4 cancer survivor.

— When in doubt, offer your love, your thoughts and prayers, your good wishes, your hugs (real or virtual).

— Always open the door to hope. Hope for less pain. Hope for a better day. Hope for success. Hope for positive tests.

Why are these things important? When a person is facing such challenges, it’s the little things that will matter most. An MRI that isn’t all negative is better than an MRI that shows a massive tumor. A complication that has a potentially good outcome is better than one that is devastating and untreatable. When we supporters focus on the positives, we encourage hope in a heart that has already taken a beating. When we recognize that the complications are scary, rotten, disappointing, we share our loved one’s concerns. By balancing our own reactions in an even-handed way, by understanding how very challenging it is to manage Stage 4 cancer, we become the light that shines in that dark hour.

The truth is that Stage 4 cancer survivors live with stress, fear, and worry every day in one form or another. Every new ache or pain could signal a spread of the disease. Sometimes there is a new tumor here, a new tumor there. But the treatments that are currently being used in advanced cancer management often mean Stage 4 survivors are gaining ground.

Who knows whether doctors will soon add a Stage 5 to reflect the new treatments that allow the people we love to continue living with the disease at Stage 4 for years, not months. I think that day will come.

In the meantime, if you know someone who is living with Stage 4 cancer, be sure that you fit your support to that person’s real needs. When in doubt, ask what the person really wants from supporters. Is it encouragement? Is it acceptance? Is it a ride to treatment? Is it the chance to forget that cancer has wreaked havoc with one’s life?

If you really love someone with Stage 4 cancer, reach out and be prepared for the realities of cancer management. It’s scary at times, it’s constantly challenging, and it’s critical that we be there to offer meaningful support. Cancer isn’t for the faint of heart. But for our heroes who insist on surviving it to the best of their ability, our job is to make the quality of that life a priority. Joy, love, laughter, acceptance, and appreciation for the good days is what gets a survivor through the bad times. Those of us who love people with Stage 4 cancer know that our lives are better, richer, and fuller because of them. They live with little miracles every day that open our eyes to what matters most. Love.

Is there anything sadder than hearing that someone’s cancer has returned? Yes. It’s hearing that family and friends pulled away at a time when support for someone you care about is most critical.

A young woman — delightful, sweet, with the infectious optimism of Pollyanna in an adult body, recently announced her cancer is back, bigger and meaner than ever. She’s someone who has celebrated milestones, shared her thoughts and feelings on a number of subjects, and encouraged everyone to make the world a better place to be. There’s not a mean bone in her body, but there is cancer.

My first thought on hearing the news was, “^%$#@! This is so unfair!” After all, she has young kids who need her. She has a husband and a history of overcoming obstacles. She has family and friends who adore her. She has so many interrupted hopes and dreams she put on hold while tackling this disease. Now what happens?

Throughout the July 4th weekend, her plight stayed on my mind. Why? Because I wished I had the power to do something positive to make a difference in her life. Too many good people are swept up in the cancer struggle; it saddens me when the journey goes from uphill to downhill in the blink of an eye.

It means shifting gears for me, emotionally and physically. It means I must accept that whatever course her cancer takes. I will figure out a way to let her know she matters, even when I feel awkward and uncomfortable, even when my words seem inadequate.

But more importantly, her news reminded me of my mother’s struggle — not so much over the disease and treatment, but the reactions of people she thought cared about her. She found out the hard way that all her efforts over the years to support friends and family didn’t amount to a hill of beans when she most needed a kind word, a cheerful thought, or even just a friendly shoulder to cry on.

Was it because people didn’t care? I don’t think so. I think it’s because we have this reluctance as human beings to admit we are uncomfortable when someone is experiencing serious illness. We want to play ostrich and bury our heads in the sand until the moment, or the person, passes. But that’s all about us, isn’t it? It’s about making ourselves feel, or not feel, for someone we care about.

Real support for cancer patients means accepting that things don’t always go well during cancer management. Years ago, when I worked with hospitalized children, I often saw the same faces come through the doors of the pediatric ward over and over again. Back then, it was normal for kids with most kinds of cancer to die within months — there was no time for hope to blossom, nor a cure to magically appear. It was what it was for decades, until slowly and surely, doctors began to understand the complexity of the different types of cancer and learned to impact its control on the body.

Nowadays, more people manage their disease over time. The years go on while the cancer remains in remission or occasionally pop up, only to be knocked down again by this new treatment or that one. People get back to living their lives, until the day that horrible blow fells them once more and the prognosis is not optimistic. It can feel like failure when cancer comes back. It means there is something we have little control over in our lives, a beast that can ruin everything.

Maybe that fear of feeling helpless is what drives many of us to stay silent, to ignore the bad news, to pull away. Maybe we fear being emotionally overwhelmed by the reality that someone we love is in dire need and we don’t have the tools to rebuild that lovely, lovely life.

Maybe we need to accept that this isn’t about us at all. It’s about someone who matters. What does she need from us that we can give?

Even if we can’t make someone better, we can make her feel better. My mother was lonely after many of her friends, and even some relatives, pulled away from her. She did, however, receive glorious support from very loyal people. There were phone calls just to say hi, to let my mother talk about what mattered to her. There were notes to say, “Remember that time we went….” There were photographs that arrived in the mail, potted plants that were delivered to the door, and even people who just volunteered to sit with my mother. The brave ones in her circle reached out and made the effort, not because they were brave, but because they put her needs ahead of their own need for comfort. Letting go of our own fears and emotional pain is the way to become brave. We’re too busy thinking about someone else’s needs to think about our own desire to protect our hearts from sorrow.

We can’t make someone better, but we can always figure out a way to make her feel better. Sometimes it’s just knowing that she matters to us as a human being. We are still aware, and grateful, she’s with us. We are still remembering the way she made us think about this or laugh about that. We want the best for her because she’s been a ray of sunshine on a drizzly day. It’s really all about her.

Personal power isn’t about fixing people. Personal power isn’t something we wield like a sword and then we move on to the next triumph. It’s about connecting with the human heart and saying, “I feel small because I can’t do much, but I want you to know I care.”

The real power we hold as human beings isn’t in the ability to slay dragons. It is in the ability to love, whether it’s our immediate families or our extended circles. We love and that is the unification of the human experience, the coming together of the community in a positive way. We should celebrate our ability to care, even when our hearts are breaking for someone we love. We should take that step and reach out that hand. No one with cancer should ever look to us and find us hiding in the darkness, running away because we’re scared. Hearts are far more resilient than we know, but only when they are filled with love, hope, faith, and charity.

Garth Brooks sang a lovely song that succinctly sums up my feelings about embracing life:

“And now I’m glad I didn’t know
The way it all would end, the way it all would go
Our lives are better left to chance
I could have missed the pain
But I’d have had to miss the dance….”

From “The Dance” by Tony Arata