A daughter’s perspective

by M.L.

My father was diagnosed with prostate cancer in 1994, when he was 65 and I was 29. There is no question that my first reaction upon hearing the news was outright fear. To some extent, it was news I found hard to believe, but when I did think about it, I was afraid. I also did not, at least in the beginning, seek out too much information on the subject of prostate cancer — it seemed that to do so was to admit it was all real. However, as soon as we found out about my father's cancer, it seemed that it was all around me: my uncle (my father's younger brother) was diagnosed soon after, and I found out that my (then new) boyfriend's father had recently had surgery to remove his prostate.

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.

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