by Leah Carson

The message from my husband Ben on my answering machine at work said : “It’s cancer. I will probably need surgery, which will result in 95% temporary incontinence and a significant chance of erectile dysfunction, depending on the outcome of surgery. With surgery, my prognosis for cure is about 85%.” My husband has always believed in being honest, but this time, he had outdone himself. I have been a health care professional for many years, yet nothing in my career spared me from the waves of feelings and emotions that rushed over me. I felt a fear for my husband’s survival. I had thoughts of him suffering physically, and emotionally. Questions about our future ran through my thoughts. How would we absorb the impact of this experience?

Ben opted to have surgery, a radical prostatectomy, as we felt this would provide the best chance for cure. At the same time, should the disease recur in the future it would leave options such as radiation or hormonal therapy open to Ben.

To prepare myself, I read as much as possible and talked with the experts. Through my work at the hospital, I am blessed with a solid community of colleagues and friends. A psychiatrist, listened to my news, and said: “That’s a tough one, you’ll need all your coping skills.” I knew these simple words were to be true.

I approached our nurse clinicians at the Urology department, two gifted professionals, to try to understand what erectile dysfunction was all about. I learned that as far as erectile dysfunction is concerned nerve and tissue damage can be inevitable during a radical prostatectomy. Although the surgery attempts to remove all the cancer and maximize nerve sparing , the process of nerve regeneration for erectile dysfunction could take up to two years. I began to realize that this would be a long process, with an uncertain outcome. They explained that male orgasms were possible without erections. This information gave me an incredible sense of relief. In the worse case scenario, there could be the possibility of sharing comfort and pleasure. That part of our lives would not have to be over. Why would it take until the age of 50 to learn this? (I think that from the time all of us hit puberty, we are sold on one model of sexuality-and of course at that stage, full blown adolescence, we all buy into it. It becomes the gold standard, so that we try and keep it going forever. I don’t think it works that way!)

Prostate cancer I was realizing is a man’s disease, but is truly a couple’s experience. The physical recuperation from surgery was only the first step. The side effects of incontinence and erectile dysfunction could have devastating implications. I had read many first person accounts, as well as research papers on these experiences. Many of the men suffered from lowered self-esteem, feelings of depression, a decreased sense of sexuality, and poorer quality of life. The stories often reflected a sense of isolation within the men and their partners, as they each struggled on their own. In my heart at stake was my husband’s sense of “joie de vivre”, which he infuses into all of his endeavours. Ben was given three months off work. I decided to take a leave of absence for that time, so that we could go through this together.

Looking back, I think that there are three phases to this process. The first two are relatively brief. There is the crisis of a new diagnosis, and decisions around treatment. In our case, the surgery was the second phase, and physical recuperation took about three months. The last phase was open ended. It is the slow road to healing; regaining a sense of wholeness both as individuals and as a couple. This is where the bulk of work falls.

Gradually during this third phase, we shifted our concerns from being focused on Ben ‘the patient’ to ourselves as a couple to begin rebalancing and looking at our needs. This illness definitely shakes up that balance, throwing various hurdles in its wake. These hurdles are, the many challenges to a couple’s emotional and physical intimacy. To maintain intimacy, a sense of closeness and mutual understanding, especially during a crisis, partners need to be able to openly express their true thoughts and feelings; their mutual vulnerabilities.

As a close couple we had deeply believed in discussing important issues. However, for me, this experience felt different. How could I burden my partner with my concerns, when he has cancer, and his life has been turned upside down? My greatest fear was to unintentionally hurt him. In the weeks prior to surgery, I held back for quite a while, hoping that in some way, I could do my part to protect my husband, at least from my worries. This silence created its own strains, as I found myself trying to second guess his fears and concerns. In this silence, I began feeling alone and out of touch with my husband. I felt that we needed to talk. I was deeply relieved to find that Ben was open to sharing his issues and wanted to know what was upsetting me. We realized that in not knowing how the other was feeling, this experience would be harder to navigate. Slowly we discussed our fears about the disease, recurrence of disease in the future, fears about the incontinence and erectile dysfunction, which may or may not resolve. We always felt enriched by physical and emotional intimacy in our lives. How would we adapt? Could we? Both of us felt strongly committed to the surgery, as it offered the best hope for survival and cure which was our first priority. In our talks, we hoped that we would find a way.

After the surgery and that busy post-operative period, both of us felt we had undergone profound changes in our lives. Surgery is a potent reminder of how vulnerable we all are, and how quickly our lives can take unforeseen turns. It was a relief to learn that the pathology results were excellent and Ben’s chances for future recurrence were small. Ben began regaining his physical strength.

We slowly began to look at the emotional and physical impact of the experience and the side effects he was going through. Physical intimacy was no longer a familiar comfortable experience. What was at stake, was the part of the relationship in which we offer one another comfort.
It’s one way we express our sense of aliveness. I wanted both of us to continue to feel alive. Again I saw myself holding back, on thoughts and feelings. I felt that my partner was feeling fragile, and vulnerable. He’d been through a lot.

I can remember going through periods of sadness of what was lost, and sadness, for our future had been altered; and with that goes the worrying about whether we could recreate a new balance. It became clear that these issues, both emotional and sexual, could be resolved only by dialogue between ourselves; to provide mutual support, encouragement and an opportunity to share our fears and frustrations.

I’d like to present some thoughts on what has been helpful to us to get back on track:

It helps to begin by appreciating that healing takes time. Physical changes resulting from the surgery can continue to occur over a two year span. Mentally both members of the couple need this time to adapt to the changes that have occurred. With no clear answers about the outcome, couples need to tolerate a great deal of uncertainty. Each couple needs to find their own balance.

The conversations around this process helped us not only to support one another, but to problem solve on an ongoing basis, around the challenges of the situation. I don’t believe that the physical realm is under our control per se, but our interactions, and the emotional climate we create very much is. Being gentle with one another is so important. Our talks, usually over a glass of wine, helped lower our stress and increased our understanding of what each of us was going through. It is not always easy to find the courage to talk about what is and is not working well, so that we could consider alternatives.

Some questions that opened the conversations:

How do you feel about the changes? What are you finding most difficult? What is working for you? What’s not working? What’s been most frustrating or challenging? How can I be of help? The answers would often surprise me, reminding me that no matter how well one knows one’s partner, we, cannot assume to know what our partners are feeling.

We consulted the medical experts about three months post surgery to consider treatment options around erectile dysfunction. Often in the literature, we noted that people waited up to one year to do so. These interventions certainly helped to move us forward and reduced the frustration of simply waiting. I felt for myself it was helpful not to have any expectations in relation to the process of physical intimacy. Whether there is or is not the possibility of erections, so be it. It is without a judgment, expectation, or a reflection of failure for either of us; it just is. Taking the time to enjoy being together and explore new ways to give one another pleasure. Allow for trial and error. As changes do occur over a two year period, this can enable couples to pick up on those subtle but important shifts.

In conclusion, I can honestly say that although the cure is a three-hour procedure, the healing process in both its physical and emotional aspects has spanned the past two years. I often look at that long scar, and think, yes, it really all did happen. I feel a deep sense of comfort in knowing we weathered this storm. It was a tough road, with tears, times of worry, and fears. We maintained our sense of humour, which came to our rescue many times during this process. Today, I am grateful my partner is alive and full of life. And, yes, there can be passion and above all, a quality of life for the couples after prostate cancer. We look forward to many more years together.
Writer’s note

Writer’s note
The road back to physical and mental health is a challenge to both members of a couple. I would be very interested in your comments, feedback, and your stories. I can be reached at: leah.carson@sympatico.ca

To read the testimony of Leha’s husband, click here.