Wednesday, September 26, 2012


the Nevers:
1. WHAT CAN I DO TO HELP? Most Cancer patients I know grow to hate this ubiquitous, if heartfelt question because it puts the burden back on them. As a three-time cancer survivor, explained: “The patient is never going to tell you. They don’t want to feel vulnerable.” Instead, just do something for the patient and the more mundane the better, because those are the tasks that add up. Want to be really helpful? Clean out my fridge, replace my light bulbs, un-pot my dead plants, change my oil, help vacuum, mow my lawn, do my snowy walks.
2. MY THOUGHTS AND PRAYERS ARE WITH YOU. In my experience, some people think about you, which is nice. Others pray for you, which is equally comforting. The majority of people who say they’re sending “thoughts and prayers” are just falling back on a mindless cliché and yes I know that there are those who really pray and “Thank You”. It’s time to retire this hackneyed expression to the final resting place of platitudes, alongside “I’m stepping down to spend more time with my family,” or “It’s not you, it’s me.”
3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED? I was stunned by the number of friends and strangers alike who inundated me with tips for miracle tonics, Chinese herbs or Swedish visualization exercises. At times, my in-box was like a Grand Ole Opry lineup of 1940s Appalachian black-magic potions. “If you put tumeric under your fingernails, and pepper on your neck, and take a grapefruit shower, you’ll feel better. It cured my Uncle Louie.”
Even worse, the recommenders follow up! A former marketing executive who’s survived seven recurrences of a Sarcoma Cancer and is who is also compiling a book, “I Know You Mean Well, but ...,” was approached recently at a store.
“You don’t know me, but you’re friends with my wife,” the man said, before asking why she wasn’t wearing the kabbalah bracelet they bought her in Israel?
4. EVERYTHING WILL BE O.K. Unsure what to say, many well-wishers fall back on chirpy feel-goodisms. But these banalities are more often designed to allay the fears of the caregiver than those of the patient. As one friend who recently had Brain Cancer Surgery complained: “I got a lot of ‘chin ups,’ ‘you’re going to get better.’ I kept thinking: You haven’t seen the scans. That’s not what the doctor is saying.” The simple truth is, unless you’re a medical professional, resist playing Nostradamus.
5. HOW ARE WE TODAY? Every adult Cancer patient I know complains about being infantilized. The woman who had breast cancer, is working on a book, “How to Be a Friend to a Friend Who’s Sick.” It includes a list of “no-no’s” that treat ailing grown-ups like children. When the adult patient has living parents, many Parents, mothers in particular fall back on old patterns, from overstepping their boundaries to making bologna sandwiches when the patient hasn’t eaten them since childhood. “Just because someone is dealing with a physical illness, doesn’t diminish their mental capacity.”
6. YOU LOOK GREAT. Nice try, but patients can see right through this chestnut. We know we’re gaunt, our hair is falling out in clumps, our colostomy bag needs emptying. The only thing this hollow expression conveys is that you’re focusing on how we appear. “When people comment on my appearance, it reminds me that I don’t look good.”
Next time you want to compliment a patient’s appearance, keep this in mind: Vanity is the only part of the human anatomy that is immune to Cancer.
1. DON’T WRITE ME BACK. All patients get overwhelmed with the burden of keeping everyone informed (except for myself as that is how I vent!), being coddled and feeling appreciated. Social networking, while offering some relief, often increases the expectation of round-the-clock updates. To get around this problem, if you’re not chatty like myself you could appointed a “minister of information,” whose job it was to disseminate news, deflect queries and generally be polite when you do not have the energy or inclination to be. Then you can do your part, too; if you do drop off a fruitcake or take the dog for a walk, insist the patient not write you a thank-you note. Chicken soup is not a wedding gift; it shouldn’t come with added stress.
2. I SHOULD BE GOING NOW. You’ll never go wrong by uttering these five words while visiting someone who’s sick. As my wife and I have observed of such visits, don’t overstay your welcome. We recommend 20 minutes, even less if the patient is tired or in pain and while in the hospital or at their home, wash a few dishes or tidy up the room. Again, you can take out the trash when you leave. Just saying?
3. WOULD YOU LIKE SOME GOSSIP? One sure-fire tip: a slight change of topic goes a long way. Patients are often sick of talking about their illness, except me. As most have to do that with our doctors, nurses and insurance henchmen over and over. By all means, follow the lead of the individual, but sometimes ignoring the elephant in the room is just the right medicine. Even someone recovering from surgery has an opinion about the starlet’s affair, the underdog in the playoffs or the big election around the corner.
4. I LOVE YOU. When all else fails, simple, direct emotion is the most powerful gift you can give a loved one going through pain. It doesn’t need to be ornamented. It just needs to be real. “I’m sorry you have to go through this.” “I hate to see you suffer.” “You mean a lot to me.” The fact that so few of us do this makes it even more meaningful.
Not long ago, I reached out to my friend’s sister, who had endured three surgeries in the previous six months for a tumor. She was still undergoing much and it upsets her that she cannot return to her work. What is most important her, I wondered?
“I liked having the family around,” she said, referring to her siblings and their spouses; “But I had a lot of issues with my room seeming like a party and my not being in a place where I could be down if I wanted.”
The most helpful tip she got? “People reminded me that I had a free ‘No’ clause whenever I needed it. Especially as someone who tends to please, that was helpful.”
So in the end, what would she say to someone like her sister who leaned over and asked for advice?
“Fully embrace the vulnerability of the situation,” she said. “I would never have gotten through it if I hadn’t allowed people in.”
That even included old friends, like myself who took the time to listen to what she wanted to say, even if it was not positive and I gave her the space to cry while I visited and yes; “I allowed her to allow herself to NOT be Positive if she did not want to as many times as she wanted!” being herself with her Cancer and any other medical problems.
Posted for you to read by Sir Richard…
With Love to you all and all that heaven will allow you!

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