Nous sommes des gens qui avons eu le privilège d’avoir une bonne santé, alors pour nous les hôpitaux ne font pas partie de notre vie. Les médecins nous donnent des informations, mais c’est toujours vite, c’est normal ils sont pressés par le temps et nous comprenons. Et aussi le stress que nous vivons fait en sorte que nous retenons peut-être moins bien ce que nous entendons. Alors, la recherche personnelle commence, nous avions entendu parler de votre site en écoutant l’émission de Paul Arcand. Mais pour moi en tant que femme je trouvais que ça ne me correspondait pas. Mais quand j’ai vu sur mon Facebook le témoignage d’une femme, j’étais tellement contente.

Je suis allé lire chacun de ces témoignages et ça m’a fait du bien. Parce que nous les femmes nous ne vivons pas cette situation de la même manière que les hommes. Nous avons des inquiétudes, cette maladie malgré le taux de réussite fait peur. Quand on lit sur les conséquences possibles avant l’opération ; incontinence, perte érectile ce n’est pas évident.

Le mieux en tant que couple est de beaucoup parler de ses craintes et de ses émotions à mesure que nous les vivons tant du côté de l’homme que du côté de la femme. Je pense que la maladie se vit seule à l’intérieur de soi-même, et que je ne peux pas comprendre les sentiments profonds de mon mari parce que je le vis de l’extérieur, mais je peux l’aider du mieux que je peux. Et en se parlant, on réussit à se rejoindre. C’est la première fois en 33 ans de vie commune que nous vivons une situation hors de notre contrôle. Et c’est là qu’on réalise la fragilité de la vie et à quel point la personne que nous avons près de nous est précieuse.

Mon mari est courageux parce qu’il a choisi la vie! Parce qu’à l’annonce d’un cancer de la prostate, il y a plusieurs questionnements, opération ou pas ? Son père avait choisi de ne pas se faire opérer et il est maintenant atteint d’un cancer généralisé des os. Alors le questionnement n’a pas été long, il devait se faire opérer malgré tout. Aller vers l’espoir, aller vers la guérison parce que l’opération c’est la guérison.

Mon mari a été opéré le 13 janvier, nous l’avons su le 31 octobre. L’attente, même si elle n’est pas longue, est stressante. Il fallait prévoir la convalescence, l’arrêt de travail et tout ce que ça comporte. L’opération a bien été, il a eu le privilège d’avoir l’opération au robot ce qui aide beaucoup à la récupération. Mais c’est une opération qui n’est pas anodine, 5 h en tout. C’est un moment d’attente long à passer. Je vous dis que quand j’ai vu mon mari revenir de la salle d’opération j’étais contente de le voir et de savoir que tout avait bien été. Pour moi, il était là et le fait que le cancer était enlevé était un soulagement pour nous.

Dans tout ceci, c’est vraiment agréable de voir à quel point la famille est importante. Le soutien de mes 2 filles, mon gendre et mon fils ont été tellement bénéfiques. De savoir que les gens sont là avec nous et nous supportent nous aide énormément à passer à travers ceci. Nous avons une entreprise dont nous sommes associés, alors j’ai eu le privilège de rester avec lui durant sa convalescence étant donné que le bureau est dans notre maison. Et les messages d’encouragement qu’il a reçu ne sont pas sans effet. Dans ces moments nous vivons des choses tellement profondes et vraies.

Mon mari est facile à vivre, un bon tempérament. On dit souvent que les couples à la retraite doivent vivre une adaptation, que ce n’est pas toujours facile. Nous, on a réalisé avec la convalescence de mon mari que la retraite ensemble va être facile et qu’on va surement s’adapter facilement et aimer ça.

D’après le suivi du Dr Lebeau, son urologue, l’opération a bien réussi. Nous n’avons aucune plainte à faire aux niveaux des soins. Les infirmières de l’hôpital Sacré-Cœur ont été professionnelles. Il n’a aucune complication, aucune incontinence à date. Perte érectile, oui. Mais c’est passager. L’important dans tout ça c’est la santé de mon mari, que le cancer ne soit plus là et que les prochaines années qui sont devant nous soient des plus agréables.

Alors, notre devise c’est une étape à la fois, laisser le temps agir et garder espoir.

1. S.

Le livre : Le cancer de la prostate du Docteur Fred Saad, Michel McCormack a beaucoup aidé mon mari et l’aide encore après son opération. Je suis disponible pour les commentaires s’il y en a qui sont intéressées. C’est toujours bon d’échanger. Courriel : acui-t-service@sympatico.ca

Maintenant qu’il va bien, nous désirons tous les deux nous impliquer dans cette cause pour démystifier le tout, faire tomber les tabous et peut-être trouver les bons mots qui permettront à d’autres hommes d’être diagnostiqués rapidement.

Voici notre histoire :

En février 2012, mon mari revient de son examen médical annuel et il me raconte avoir questionné le médecin concernant le dépistage préventif du cancer de la prostate. Voyant arriver ses 50 ans dans quelques mois, il préfère être prévoyant. Après 26 ans de carrière comme paramédic, il connait trop bien la réalité concernant le cancer. Ce monstre n’a pas de grille de sélection. Il attaque au hasard. Comme la prévention est la plus sage des avenues, mon mari choisit cette avenue.

Au test de palpation, mon mari apprend que sa prostate semble un peu plus grosse que la normale. Mais, le médecin insiste sur ce point, ce n’est pas un indicateur très fiable. La prise de sang pour mesurer l’APS (antigène prostatique spécifique) sera le meilleur indicateur.

Les prises de sang sont donc effectuées et l’attente des résultats débute. À cette étape, nous ne sommes pas trop inquiets. Nous prenons de l’information sur Internet. On y apprend que les taux normaux d’APS varient en fonction des tranches d’âge :

Moins de 50 ans = 0,0 à 2,5

50 – 59 ans = 0,0 à 3,5

60 – 69 ans = 0,0 à 4,5

70 ans et plus = 0,0 à 6,5

Selon les données de la Société canadienne du cancer, seulement 1 homme sur 4 dont le taux d’APS est anormal sera vraiment atteint du cancer de la prostate. Les résultats arrivent. APS 4 : normal 2.5. Selon le médecin, ce n’est pas inquiétant, mais il surveillera aux 6 mois.

6 mois plus tard, l’APS a grimpé à 6.3. L’urologue demande une biopsie. 10 « carottages » sont effectués dans la prostate de mon chéri. L’attente des résultats recommence. Comme cette attente coïncide avec la période des fêtes, nous n’aurons de nouvelles que 2 mois plus tard.

Of course, initially, both my parents tried to downplay the gravity of the situation — and there did seem to be some relatively successful avenues to follow. Prior to his surgery, my father was put on hormonal treatment in order to shrink the prostate and hopefully make the surgical process easier and more likely successful. The surgery went well, and for several years, I felt sure that that was it: no more cancer. Again, I don’t think I tried to find out too much about what might happen…

A few years ago, however, we found out that my dad’s PSA readings were no longer at zero. Again, I don’t think I fully realized what this meant; I knew that it meant that there were still some cancerous cells active in him, but it seemed comforting to me that the levels were still so low. I guess that was a good thing, in one sense; however, it also meant that they were there, continuing to grow, continuing to reproduce…

At the beginning of last year, things changed more dramatically, as a lump had developed on my dad’s sternum that seemed to continue to grow. He was in no pain, but the worry was ever-present. His doctors increased the medication he was taking, but this seemed to have no effect at all. In the summer, he underwent radiation therapy, which seemed to stop the cells in the area of the lump, but it was made clear to us that he would then have to undergo chemotherapy. This didn’t start until last fall (2002); and this was about the worst couple of months we could have imagined. My dad was hospitalized after the first treatment, when his fever went above acceptable levels; he ended up in a hospital bed that seemed to be in a hallway alcove or closet, for all the comfort and privacy it provided. By comparison, the second treatment went relatively well, the third a little less so. After the fourth, he was hospitalized again, and finally, the treatment was stopped after a partial 5th dose was given (there were supposed to be 6 treatments in all).

Both my parents wondered whether this made any sense anymore; it seemed too much to go through. Although I could see how hard these treatments were on my dad (and my mother as well, in a different way), I couldn’t believe they might consider forgoing any further chemotherapy; to me, that was accepting that there was nothing more to be done. The one positive thing in all this was that my father was in no pain; he was tired, and often depressed, but there were really good days and even weeks. Lately, this too has changed. This fall, his doctors tried to have him go through more chemotherapy, but using a far lower dose. He went through one treatment and stopped. It wasn’t that the treatment had affected him as drastically as the year before, but the actual results on the cancer cells didn’t seem significant. More recently, he developed a small growth on the inside of his skull; as a result, he has double vision and very limited movement of one eye. Emergency radiotherapy has helped a bit; however, the damage may be irreversible. He is now waiting to find out about other treatments, but so far we’ve had no definite news.

I guess this brings me to a topic that has bothered me all the way through, and that is the way that doctors have treated the situation. From the first diagnosis almost 10 years ago, doctors seem to have believed that my father (who is a very patient, intelligent and logical man) could never understand what was going on; they have been dismissive of his questions, abrupt in their diagnosis, seemingly unsympathetic and extremely slow to respond in some cases. I don’t mean this to apply to everyone; however, I can’t say that this situation is isolated to only one doctor. My father has found it very frustrating and so has the rest of our family; psychologically, the impact is that he has felt that he was not worth treating — that there was nothing to be done, or that the doctors had more pressing business to attend to. In general, I think my dad had more questions answered by nurses and internet sites than by his doctors. Again, perhaps it seems that I’m not being entirely fair; but this is how it has seemed to us.

As far as the effect this has had on our family, well, that’s not easy to define… at different times in the last 10 years, my dad has seemed to feel that he shouldn’t burden us (my 2 brothers and I) with too many details, so he doesn’t always speak much about the situation. My younger brother lives furthest away, and has 3 sons of his own. When they are together, I know he tries to talk to my father about what is going on; often, I think these conversations go well into the night. My older brother has a very difficult time speaking to my dad about his illness. I think my boyfriend and I are the ones that ask the most direct questions; we’re also the only ones in the family with no children, so it is often easier for us to see my parents in a situation where we can discuss things without interruption. We don’t live that far away, so we see my parents relatively frequently and speak to them often. I want to keep up with what is going on, if only to convince my parents to keep pushing for information and treatment.

Apart from my father (obviously), my mother has had to deal with the cancer in the most direct way, as it affects every day of her life. There are seemingly unending hospital and doctor’s appointments, and also seemingly endless waits for more news. From time to time we discuss what is to happen ‘after’, but it is not yet a subject anyone is ready to pursue in detail. In her, I see frustration over things that cannot be done and plans that cannot be kept or made, but there is also a patience and acceptance that is far beyond me.

On a more personal level… well, this is the hardest to write about. It doesn’t matter how logical we can be about treatment, and good results, and extending time, etc.; in the end, I just can’t even imagine life without my dad. Sometimes I feel angry when people speak in platitudes — “he’s lived a full life”… I know they don’t mean it, but it just sounds so empty. There are days I drive to work in a fog, not able to think what I may have to cope with in the near future. I wonder if I could do more, if I could be with him more, if I’m just passively letting things happen that I could somehow actively prevent.

Strangely, as sad as I sound, as sad as I am as I write this, life isn’t all that dark or depressing — things go on, day to day. Work gets done… This has been one of the most difficult things I’ve ever had to write, but I think it may possibly voice what others have been feeling as well. I don’t know if I could claim to have any advice to share, unless it is that putting thoughts, feelings, fears and worries into writing can be a revelation and something of a relief. Finally, while health care professionals have a lot to offer and we need their expertise, it would be an asset for everyone if they did not forget that they are dealing with human beings rather than symptoms and charts.

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

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.