In The Shadow of the Disease - Ginette Patenaude

Life was great! No warning, no symptoms to alert us that all was not normal and peaceful.

In 2005, Allen’s PSA had gone up to 9.6 and a biopsy was quickly scheduled. He had prostate cancer. Now what? After the initial shock, the numbness grew into apprehension. As the urologist suggested, radiology was the best treatment (30 external beam treatments at the Gatineau Hospital). Allen basically dealt with this on his own as he went from work directly to the hospital before coming home exhausted. Next was dealing with radiation's unpleasant side effects. I kept reassuring him by saying you will get through this, believing that the situation would get better and that our lives would return to the way they were.

The PSA had dropped to “0”. Watchful waiting was the recommendation. I felt utterly helpless trying to work out what was going on, dealing with the fear and worry Allen shared with me. Is this going to work? Is Allen going to regain his strength and joie de vivre? He expressed that he felt aloneness since I really didn’t understand the magnitude and turmoil this disease caused. I felt responsible for much of his anxiety. The psychological effects played a number on both our psyches. This would be over soon, like a bad dream. Two years later, Allen gradually regained strength and his energy level increased to somewhat normal. He felt good again.

In 2009, another curve ball. The PSA began climbing, an indication things were again worrisome. The urologist insisted the next step had to be hormonal treatments –Zoladex LA injection every three months with daily Bicalutimide for a lifetime. This is like Russian roulette, leaving one in a state of fear. This time I would become more engaged in assisting Allen, accompanying him to appointments and treatments.

The treatments had side effects, the most difficult being loss of energy and muscle strength. This meant I had to help out more in household labours. Allen kept telling me that I didn’t get it, that I didn’t really understand how he felt. The fear of recurrence constantly penetrated his thoughts and he became very depressed. This stage was the most challenging for me. How could I help? I realized this disease was shared by both of us.

Medication was the only method to deal with the many side effects. The doctors would answer our questions with statements like “That’s the way it is now. That’s normal in your case.”

Since we lived in Wakefield, no help was available, no consultation, no coaching on how to accept and live with the “new normal”, no gym facilities. I became resentful and angry at the disease holding back on the sentimental side of our relationship, afraid to get too close, afraid to look at it straight on. I broke down, reality set in and I become aware of the impact this disease had on our relationship. We often discussed issues concerning prostate cancer; we questioned researched, weighed options and tracked progress.

In February, 2010, I was on the waiting list for surgery for ovarian tumours. Waiting was terrible. My surgery went well and the results were very good. I had constantly worried about the possibility of having cancer. Luckily, I didn’t. I understood more how my husband felt knowing that he did have cancer and had a recurrence. Allen is now living with chronic cancer and I am mostly in the shadow.

PCCN Ottawa has been a blessing for us. The information acquired, the many friends sharing, have certainly made a positive difference on our lives. We have joined a Taoist Tai Chi Health Recovery program, which has promising effects on our wellbeing. Hopefully the new Maplesoft facilities will offer support for us.

I am dealing with the new normal. Je t'aime, Allen.