Before you can care for others, you need to care for the carer first

This is one of the earliest and most repeated lessons taught to student nurses. I have just completed a short story illustrating it for my coming book Lifting the Gloom: antidepressant writings, and wanted to tie it to a wonderful chapter David Hooper had contributed to Cancer: A personal challenge, which gives the personal story of how David, a super-helper, came down with cancer, and how it changed his life.

That was in 2005. David is no longer with us, so posting his chapter here commemorates his giving nature.

3. My Cancer 101

By David Hooper

The majority of people with cancer were the ‘nice guys’ — the people of whom it was said, “How unfair it is for… to get cancer, they’d do anything for anybody, you couldn’t meet a nicer person.”

Carl Stonier

The surgeon looks excited, while friends and relatives gather around my bedside. My oldest brother Bill holds my hand. I can see my wife sitting in her wheelchair with my friend Dan behind her. As soon as they learn the results, Dan will take Jane to a nursing home while I recuperate.

“David, we took a biopsy before we operated and it was cancerous. You had a sarcoma. The good news is I think we got it, David. I really think we got it all. We won’t know for a few days, but call my office and I’ll give you the final test results.”

Dan wheels Jane out of the room and I have a flashback to my neighbour when I was only eight. He had a sarcoma and died. “What does this mean? This is it?” I ask, biting my lower lip.

The surgeon hugs his clipboard to his chest. “The oncologist will be able to tell you more. He can give you all the percentages and numbers, but I think we got it. The test will tell if there was any in the surrounding tissue.” The surgeon continues and explains that I can no longer take care of my invalid wife. He had to take so much muscle to get to the cancer that my stomach wall is now paper thin and in danger of herniating.

Now I will die of cancer alone, I say to myself. I can’t express what goes through my mind. This cancer is an invisible invader that shows no mercy, takes no prisoners. Suddenly, my life is no longer thought of in goals, but in time — how much time do I have left?

The next day a nurse pushes my wheelchair to the front door of the hospital. I don’t pay much attention to her, but she chats brightly to my brother and me as we descend on the elevator. Although February in Kansas City can be brutally cold with wind from the northwest blowing off the prairie, today is reasonably mild and the sun is warm on my skin. The nurse stands by my side, lays a hand on my shoulder, and bends over to meet my eyes while my brother gets the car.

“It is not over,” she says. “I had cancer two years ago and they didn’t give me much hope — but here I am. I enjoy every day I have instead of worrying about the days I don’t have. If you think it’s all over — well, it’s all over. I think you’ll do fine.”

Someone like me, I say to myself. She understands how I feel, although she doesn’t come out and say it. I can see it in her eyes, feel it in her voice, and touch. This moment won’t be the turning point in my “new” life, but the words will echo in my ears two years later.

“Ready to go home?” Bill asks once I’m situated in the car.

“No. I want to go see Jane in the nursing home.”

Bill nods his head. “Okay. You sure you feel up to it?”

Feeling up to it doesn’t have anything to do with it. I have to go. Jane and I have travelled together in life and we always face things as a team. She is my strength as I am hers. I have taken care of Jane for a long time and the thought of entering an empty house without her presence frightens me. I can’t fight my biggest fight in my life alone.

Friends stand around Jane’s bed as I enter the room. I stumble to the bed and into her arms. “I’m so sorry,” I choke as the tears run down my cheeks and I feel Jane’s hands surround me.
“We’re going to do it,” she says. “We’ve always overcome.”

I feel her strength. I guess that has been the secret to our successful marriage: when one falls, the other picks up. Jane and I had fallen and picked each other up many times in our twenty-six years together, but I wonder if we can do it again. It seems like the odds aren’t in our favour.

Before we were married, Jane started having balance problems that were later diagnosed as Multiple Sclerosis. Although she worsened through the years until finally confined to bed, we have had a good life with two wonderful children. Then in 1997 I had pancreatitis and after almost dying eight times, left the hospital seven months later a shell of the man I had once been. Jane had become worse because of my illness, but we persevered. Now I stand bent over in a nursing home room with her telling me everything is going to be okay. Once, when our son was in high school, Jane had fallen down and as I started to pick her up, I fell, too. We started to laugh as our son looked at us with bewilderment.

“You guys are nuts! You’re always laughing!”

Jane looked up at him, a wide grin on her face, and that twinkle in her eyes. “Sure we laugh. We laugh so we don’t cry.” And now we face the biggest challenge of our lives: my cancer and her being in a nursing home at age fifty-five.

My brother and sister-in-law take care of me while I mend. We take long walks together, discuss the meaning of life, and help me define my new life. I see Jane every day, and my daughter and her husband say they’ll move in with me after my brother leaves. I no longer seem to have control of my destiny and that depresses me. I used to tell my children to “Take charge of your day or your day will take charge of you,” but somehow, I can’t follow my own advice.

The next few months are up and down: fighting depression, high euphoria, and everyone giving me advice on how I should live my life. My daughter wants me to be the old father she’d loved as a child, but I tell her that father is gone. Not entirely, but life changes and people change. My son and I go camping. He listens to me but doesn’t say much. My brother calls and comes up to go to the doctor with me because I’ve learned with my wife’s illness that another set of ears is mandatory when going to the doctor. I visit our lawyer and get our trust fund updated. I clean the basement and redecorate the house so if we have to sell, it will be ready. My life ambles on as I wait for it to end.

I don’t know at what moment I begin to change — really change — but one day as I sit in my office writing, I realize that I am going through a process, much like grieving. People want me to pick up the pieces of my life, put them nicely back together, and become the person I’d always been without allowing me to grieve at my losses so I can bounce back. I start talking with other friends who’d had cancer and find out they had the same fears and adjustment problems. We talk about families not facing the problems, but pushing the cancer aside as if it never happened. It’s like getting your arm cut off, but no one notices. I scan web sites to find out all I can about my type of cancer, which will kill me if it returns. Finally, I can take no more. Sitting in front of the computer screen one night after I’d returned from the nursing home, I reread an article for the umpteenth time until I’d deciphered every word. I realize there is nothing I can do but take care of myself, get plenty of rest, avoid stress, and eat right. I rub my eyes, turn off the computer, and look at my dog Bilbo lying beside me.
“Fuck it!”

I scream so loud that Bilbo jumps and cocked his head at me as if to ask: “Are you all right?”
I continue my stream of obscenities as I walk into my bedroom, a trail of clothes behind me, plop into bed, and immediately fall asleep.

The next day a social worker friend comes to see me. Jane was still enrolled in hospice at that time (another story for another time) and Barb wants to see how I am doing. I talk and she listens. She has another appointment to go to, but she doesn’t look at her watch or twitch impatiently. A simple nod of her head, an understanding smile, and I find the words spewing out of my mouth until I am exhausted.

“So how do you think you’re doing now?” she asks.

“Fine. I think what I’ve been going through is normal.”

“I think so, too.” And with that statement, we start to go through a simple plan on how to conduct the rest of my life, whether it’s two days, two months, or twenty years. “Make a list of one, two, five and even twenty year goals,” she says. “But remember, for all the goals you have, the only thing you really have is today.”

“So make the most of it,” I say.

“You got it.”

Now, my life begins to change. I realize that nothing is a given about living except dying. The secret to life is living each day to the fullest. People deny death, but to really live, you must understand that death plays no favourites and life is a chance. I could get run over or die of something else before the cancer returns. My dad once told me he wasn’t afraid of dying, it was just the process that bothered him. By focusing on the dangers of what could happen to me, I’d started the slow mental process of dying, but now I am determined to change. The first thing I do is to start my list of goals for the rest of my life. I realize that to succeed, I need to take chances. No one succeeds in life by sitting still. I don’t mean success in terms of money, but in terms of fulfilment. Instead of dwelling on my own problems, I have a great desire to be among people and help others. I immediately start volunteering with my church at a local food pantry that serves free meals. A friend asks me to take over a writing class for senior citizens. The residents at the nursing home don’t like bananas, so I become their official baker, hiding the banana in nut breads, muffins and cookies. I have always believed in giving of my time and talents to others, but now I need to give even more, because what I receive in return has a healing power that no doctor or hospital can provide. The look of joy you get from a nursing home resident when you place a hand on his or her shoulder and offer a homemade muffin is overwhelming.

I still can’t go back to work because of physical limitations, so I need something else. Monthly Short Stories is born in October, 2003 and the first issue in January, 2004. I don’t know what I am doing, but I limp through the first year and have a blast. I become acquainted with people from around the world. As if I didn’t have enough to do, I am now on a new venture: helping nursing homes find volunteers to visit residents. I give up teaching for this, but isn’t that what life is all about? Testing, touching, and tasting those bits of life so we can understand and enjoy it better.

I still get upset about politics, the environment and so on, but I stay very positive. I wake up each morning to a new day where I start over and make some small difference. I won’t lie, the cancer still nags at me, but it won’t run my life. My blood pressure rises when I go to my quarterly checkups, but whether I have two years or twenty, I will make the most of them. Recently a friend asked if I’d become more religious. I answered, “No, more focused.” God gives us time on earth with the responsibility of stewardship of the planet and to help others. I don’t think he wants us to focus on the afterlife. It’ll come, so why waste today looking for tomorrow? My checkups continue to be negative, which is great because I still have so much to do.