The ambiguous challenge of being a mother to an adult son with cancer

By Patricia Cannistraci, DNS, RN, CNE

It’s different when your child of young adult age is diagnosed with cancer. The dreaded words ‘it’s cancer’ are challenging enough. But those limbo years when your child is not really a child any longer, adds to the challenge.A� They are old enough to be in college, or completed college. Yet not fully independent, perhaps not married yet or with a family of their own. Some sources call this 20-39 year age range, early adulthood, or provisional adult. Call it what you want, but as a mom you quickly realize your role will be altered and ambiguous as you care for your young adult son who has a cancer diagnosis.

That was my experience with my 27 year son, diagnosed with testicular cancer. He had graduated from college, had a great job as a mechanical engineer, and a lovely girlfriend, Julie. They lived in a bright, trendy apartment. Together they squeezed every drop of “living life to the fullest” out of theirA� life together. When we got the news of the diagnosis, the world seemed to stop. It really is all a blur as a I look back – a number of doctors, ultrasounds, surgery, specialist, protocols – the decisions went on and on. It seemed everyday was a new challenge, a new ‘thing’ to worry about, a new decision to be made.

Early on though, as a mom, I realized I had to share this ‘caring for my son’, with him and his girlfriend. Fortunately for me, Julie is a wise and bright young woman. While I may have loved him first, she loved him in the moment now. Both our loves mattered, both our loves were different though. In a frank conversation, she and I discussed our roles and how this might unfold. We came to the realization that neither of us could do this for him, we couldn’t bear his pain, we couldn’t take a turn for him in the chemo chair, we couldn’t take all the side effects for a day or two to give him a break. We could only be a support, at his side, as he braved a journey of surgery and chemo that was his, and his alone.

In our conversation we settled on the following four concepts as our guide to be his best support.

First, we hung a life line knotted tightly around HOPE. While words such as ‘cancer, ‘aggressive’, ‘tumor’ weighed heavily in our hearts, we had words of HOPE too: ‘cure’, ‘95%’, ‘get this in the rearview mirror of life’. We both agreed to cleave to HOPE, and hold each other accountable to keeping HOPE alive in my son’s world. No matter how low the days ahead, we would remind each other of HOPE and keep that candle burning brightly in my son’s world.

The second concept was PRESENCE.A� In the rapidly changing, technology driven world, we seldom live in the present moment. We have regrets from yesterday and worries about tomorrow, and struggle to disengage and just ‘be’ in the moment. Julie and I agreed to live fully in the moments of my son’s journey. His priorities became our priorities. This meant acknowledging our own limitations, when Julie needed a break, I was there. And when I couldn’t be there, Julie was.A� This went beyond sitting with him during chemo infusions, and expanded into evenings ‘off’ for Julie, so she could go out and relax a bit, while I sat with my son, watching him bear the effects of chemo ‘doing its thing’.

Our ability to be PRESENT was facilitated by the third concept, COMMUNICATION. Julie and I promised each other to be honest and open in our communication. As a mom, I just wanted to be by his side, caring, cooking, and assuring his comfort. That wasn’t realistic given his relationship with Julie. However, Julie and I did talk about ways I could help: sending over a few meals, assuming responsibility for transportation to and from chemo on certain days, and being the key person to keep extended family informed. Julie promised to be honest with me, and I promised not to be offended by whatever was said (e.g after all, how could he not love my chicken casserole?). I was actually pleasantly surprised and relieved at how quickly Julie and I become a well oiled machine of ways I could help to contribute to their comfort at home.

The last concept that guided us was COURAGE. None of the first 3 concepts would even be possible if we were not grounded in COURAGE. For lack of a better explanation, I define COURAGE, as being willing and able to show up each day, and face the challenges good and bad, and see the day through to the end.A� It takes a healthy dose of courage to be part of the support team for a loved one facing cancer treatments. I was fortunate to have such a courageous partner in Julie to be able to support my son. However, we both felt he had a great deal more courage than either of us did.

As a mother, I will always want to protect my children. When they were young, I worried about every detail of their lives. I found that when I was in control, I felt I could avoid pain, suffering, or danger in their lives. It is different when your child is a young adult.A� The control changes to collaboration, the circle of influence is much wider.A� Ambiguity fills the spaces that were once belief in your mind. In the end, you do get through it. Perhaps not writing the script in your own hand, but rather with the help of others, you can face the challenge and see it through.