Thursday, July 02, 2009

An Unwanted Journey: Day 1318 - Looking too good to be terminally ill


Some who read this blog do so because they’ve been diagnosed with colorectal cancer. In fact, at least some health care providers in the Waterloo Region habitually encourage newly diagnosed patients to read this blog. They do so both for its sometimes brutal realism, as well as for its optimism and useful  references.

I’d love sometime to get together with other patients to talk about an experience that some of us might share. That experience relates to people commenting on how well you look.

“Gee, you look really good, Don. If you hadn’t told me that you have terminal cancer, I wouldn’t know that there was anything wrong with you at all…OK, maybe that cane that you carry with you might be a clue. And you’ve lost weight. Come to think of it, you’re also looking pretty pale these days. And there are those grimaces that momentarily capture your face, and moans we occasionally hear from the main floor bathroom.”

My wife will then offer up her perspective.

“You know, as soon as you leave today, Don will probably have an extended nap to recoup energy. And if you were here in the evenings and night, you would see those times when the pain level is far higher than it is at this moment. You’d also see how difficult it’s been for Don and his medical team to balance the pain medications to make his life bearable and to avoid delusions. In fact, almost nobody thought Don would make it beyond Christmas last year. From my perspective, it’s almost miraculous that he’s still here entertaining visitors.”

The common wisdom is sometimes stated as follows:

“If you feel good, then you are good.”

“If you look good, then you are good.”

My response tends to vacillate between some variant of common wisdom and a more scientific perspective. Science, for instance, offers us ways to extend our senses, to take measurements and devise statistics that are more finely tuned than the rather crude “feeling good” and “looking good”.

Common wisdom is where I go when I’m overwhelmed with all the statistics. When I can understand the measurements and statistics, then I put common wisdom back in the tool bag for another time.

What does it matter?

With most people, it really doesn’t matter how well you feel or how good you look. But with people who really care for you or whose care giving requires specialized knowledge and measurements, then it can be frustrating communicating with them when you sense that they don’t have the complete picture.

On an emotional level, if a family member tends to discount your concerns because you simply look good at the time they are with you, then you have to deal with the frustration and determine whether or not to risk telling them that they just don’t get it. With concerns you might have with health care providers, it’s much easier; you simply insist that they get the big picture one way or the other before they start a procedure or ask you to follow a new routine.

What to do?

I’d like to hear from some of you about how you’ve resolved the emotional frustration of dealing with people who you sense don’t understand the seriousness of your medical condition. Sometimes, perhaps, it’s the other direction. You mention cancer and they have you already in the grave. But most of the time, the frustration is in sensing that the other person doesn’t get how sick you really are.

Having said all that about emotional frustrations and difficulties in communicating, I have to admit that my overall journey has been remarkably positive. I’ve seen people open up and share difficult topics with me – difficult for both of us. I’ve seen people struggle with how much or how little to say, with the overall result being an extension of healing in both directions. I’ve sometimes had to switch roles from patient to psychological counsellor, again with generally very positive consequences. Like so many other important relationships, my unwanted journey has revealed opportunities for growth and enrichment.


Anonymous said...

... how you’ve resolved the emotional frustration of dealing with people who you sense don’t understand....

The short answer is don't invite them back. The longer one is:

Hey - you're the sick guy! Far beit from you to have to aid and assist others in coming to an understanding of your condition. Save your energy for when it counts most.

It's understandable that some people may colour their comments with a relentless optimism, some may be flat-out lyning to make you feel better, some may have difficulty coming to grips with your near death (I'm in this spot)and their comments reflect that.

As to the others, those with doubts about the seriousness of your condition, you can surprise them by dying quick and early thereby convincing them otherwise. But that's a solution worse than the problem.

I guess the short answer will have to do.

Regards, from Way Out West

P.S. - bike trip delay due to freakin' rain in all the directions we want to travel. More later.

Episcopaliann said...

What a journey it is, Don! You have blessed us all by sharing it so honestly and beautifully.

My prayers for you and your family are matter how good you look! ;-)



Daria said...

I was quit frustrated with trying to communicate the seriousness of my illness to family ... especially.

My psychologist said ... forget about them. Some people do not get it and refuse to get it ... don't waste my energy. That advice has taken a lot of pressure off of me.

Don Spencer said...

I think I need to defend those who inadvertently wonder how one can look good while so terribly ill from those who don't really give a damn. Certainly if the patient senses a lack of affection, there isn't any need to waste one's energy. But if the visitor is implying that your condition can't be very serious if you look so good, then yes, don't waste any more energy.

I have to say that in almost all cases, my visitors have shown true affection, but are simply puzzled as to how the disease works. After all, unless we're cancer specialists and understand the disease process, we can't "see" the disease working. In fact, that's why cancer is so frightening. One's physical appearance doesn't usually demonstrate the disease process until death is imminent.

Clearly there are many levels to this discussion and no easy solutions.

laura said...

We are going through the same thing right now with Dave. We have decided against further treatment, and been told to savor the summer, but everyone says how good Dave looks, it is like they think you are lying just to get sympathy or something. We are concentrating on being together and making more memories for the boys,and ignoring those who think that we are being overly dramatic.

brie said...

Hope the meds are keeping the pain at bay, even if it does mean confusing reality and dreams .... I just finished a 2000 word paper on Borderline Peronality Disorder and the use of Rational Emotive Behaviour Therapy in its treatment. Hope you're impressed I can spell all those big words :-)! Reading about all of these disorders, 'though, sure makes me realize how many ways there are for parents to mess up their kids. You and M should be very proud of the job you've done as parents - I know what two fine young men your sons are. A wonderful and lasting legacy.

Thinking of you.


Don Spencer said...


Thanks for the update on Dave. I understand what you mean about the implication that either your disease isn't as serious or that you are exaggerating in order to elicit sympathy. Without saying so in so many words, I sometimes think that I am being judged by my appearance. This is especially frustrating when people have no idea how often I find myself groaning in pain and my wife pleading with me if there is something, anything, that she can do for me. She sees directly how deceiving appearances can be and how much effort I have to put in to look better than I appear.

The thing is that I, probably like Dave, want to look good because sometimes that's all that connects us with our previous normal life. Although I would never wish this disease on anyone, I sometimes wish that they could walk a mile in my shoes - a mile, or maybe a night or 24 hours - just to see what's it's truly like.

Please convey my best to Dave and may you both enjoy your time together this summer. There are at least a few of us "out there" who understand. May I suggest that Dave consider buy a favourite piece of clothing, even if he feels hesitant to waste money. I'll do the same.

All the best,

Don Spencer said...

Hi Brie.

I'll leave all those personality disorder issues for you to figure out!

Thanks for the comments about M and my raising of P and I. When there is relatively little time left, I tend to focus on things that I would do over again, even though I know that the overall job we've done is a good one. Like you and J, I'm sure there are times when you wonder whether choices we've made were the right ones for our children.

Only we can answer truthfully, but when time is short, the tendency is to become overly critical of ourselves, instead of trusting our instincts. I suspect that right up to the last moment, I'll be wondering if I've done the right thing and whether the future holds enough time for M to correct my mistakes.

Whoever says they know better is probably lying...

Best wishes,