Editor’s Note: In honor of Caregiver Appreciation Day, we asked PanCAN’s Survivor & Caregiver Network member Sue Alderson, who has cared for her partner, Rich, for over five years since his pancreatic cancer diagnosis, to reflect on her challenging yet rewarding journey as a caregiver.
I am a caregiver by nature. I advocate for those in need. When my “person” received the most devastating news of our lives, “You have pancreatic cancer,” I simply did what I do. I upped the ante in my role as a caregiver.
Reflecting on what I have done over the five-plus years since the diagnosis, I have been his support person, advocate, cheerleader, hand-holder and life mate. Every action that I take is because of love. Every hill I climb is because of love.
Rich is my “person.” I know I speak for many when I say, the thought of losing him to this horrible disease was and still is more than I can bear.
There are days when I am weary, and I wish someone could carry my load. However, I would never not provide the best that I have to him.
My story is not unique, but some of the variables are different. The overwhelming emotion is fear, and the ask is always, “Is there any hope?” And for me, there’s the agony of watching Rich refuse to eat and waste away.
The diagnosis of pancreatic cancer is devastating. But when I accepted it, I looked for hope everywhere. I looked for the silver bullet, the miracle. I looked for the road that led directly to being a survivor. I searched everywhere for a beacon of hope.
How I Changed as a Caregiver
I have changed how I am in the world. I cannot plan too far into the future. I am flexible with wants being wishes.
I feel we have lost that part of our lives that was full of dreams about the future. We are in the here and now.
I have shed more tears than I knew was possible. I have climbed the stairs to check on him to the point where I did not need a stair climbing machine.
I am an amazing worrier, and I was disappointed to realize that all the worry in the world did not change the outcome. I had to redirect my energy.
I found that those I thought would be my support are not capable of being what I need them to be for me. In other words, I learned to accept the limitations of individuals and turn to people who will not minimize my concerns.
As the partner, I have tried to be the best person that I can be. But I have moments when I am not my best self, nor am I always hypervigilant about everything. Bouts of resentment happen.
Recently, I spoke with a woman who is caring for her person. The prognosis is grim. It’s been helpful to share my strategies and my story, including the highs and the lows.
I have been living with this for more than five years, and my perspective has changed since I first started this journey.
I have been able to normalize the monthly CA 19-9 tests. “Scanxiety” lasts for a day instead of a week. I do not attend every office visit. Thank goodness for technology and speaker phones.
I differentiate myself from Rich. No longer do “we” have pancreatic cancer. He has the disease, and I am navigating the parts of our journey together that I can.
Every ache, every cough, every sneeze can create a moment of high anxiety. Between chemo treatments, not having a spleen and missing lymph nodes, everything sets me on edge. But I cope. Some days, pancreatic cancer is actually in the background.
I still cry, but the frequency has diminished. I honor all my emotions. None are right or wrong. I work to remember that I can control my response in some situations.
Where My Caregiving Journey Has Led
For all those who are beginning this journey, please know that this is not an easy road, which is easier for me to say today. I am aware that tomorrow I may be the one in a dizzy, terrified state.
However, the changes that I have made allow me to celebrate that Rich is by my side. My person, my heart.
However, I wish the road of dealing with pancreatic cancer had not been part of our journey. I cannot alter that reality. The cards have been dealt, and I play my hand to the best of my ability.
As a caregiver today, sometimes I feel like I’ve been in a clothes dryer. The cycle ends, and I can breathe. Then the cycle starts again. Taking an hour for yoga, lunch with friends or a hike does not alter the outcome. But those moments help me connect with the greater world.
Going to work or taking an afternoon to connect with our lives before the disease is not an act of selfishness. Laughing and experiencing pleasure does not betray the person in your care.
Knowledge is power, and I encourage people to become knowledgeable to ask questions. When we see the oncologist, the surgeon, the endocrinologist, my vulnerability is always present. I had to learn to trust the medical professionals with my most vulnerable self.
I would meditate before I met with the doctors and use my breathing techniques during appointments. I take notes in the medical meetings because that helps me stay focused. You need to stay focused and not go to just the darkest part of the experience.
In my darkest moments, I know that I can still find compassion for others going through this struggle. I listen to their stories, and honor their struggles and fears. I focus on the strengths that we bring to the table.
Through shared experiences we find community. We learn from each other. The collective caregiving community provides a wealth of information, support and a depth of caring that often helps to keep me centered.
I am still in the middle of my journey. It’s been 20 months since the last recurrence. Yet, the detours and roadblocks have been many. All of us need to find the space to give our personal best for those in our care.
Today pancreatic cancer is part of the tapestry of our lives. Today pancreatic cancer is not in the forefront of my life, but it lurks close to the surface. The disease is the driving force for much of what I do.
Today when Rich left for work, I kissed him. And I was grateful for what we have, together.