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How I’m trying to make a difference in CHemo and Cancer

October 17, 2012

A letter I sent to the head of the Stanford Hospital Cancer Center:

 

PO Box 733

Mount Hermon, CA 95041

Mr. Amir Dan Rubin

300 Pasteur Drive

Room H3200

Stanford CA 94305

 

October, 17 2012

 

Mr. Amir,

 

I want to thank you for the financial assistance the hospital has given me. This was the second time I had cancer. The main thing is I want to give more of myself. I’ve written a couple novels, but I’m also close to finishing my non-fictional book about my experiences. At the end of the book I offer suggestions on how to improve care, as well as what chemo patients can do to improve their outlook. I sent this to Terry Doyle, who is an excellent guy. But I also wanted you to see it too.

 

I have to say this. The one thing I feel the strongest about is that information about a medical port should be provided in a pamphlet to a patient at their first appointment in oncology, It should also be in English and Spanish. I saw a couple people who didn’t understand English and were too intimidated by the idea of surgery and now had bruised veins and were suffering. It should be explained that getting a port is a very minor surgery that doesn’t require being completely sedated. Maybe oncologist should be required to attend a meeting and hear a lecture by Ryan Daugherty, acute nurse practioner in Interventional Radiology, an excellent example of a compassionate person with superb bedside manner, who installs ports. I feel very strongly about this because a patient can’t cure themselves, but they can take steps to alleviate their pain. I don’t feel oncologist get this concept—maybe if part of their job interview was requiring they be connected to an IV and wheeled in  a gurney from one end of the hospital to the other they might get it, Yes, it would be a humiliating indignity—and surprise that’s how a patient feels too when they’re dragged down by their body. Maybe some doctors have to see the world they look down upon to see why some people don’t look up to them. Quiet a few nurses I talked to thought that was a good idea.

 

One thing that recently occurred to me. My oncologist never asked me a single question about my personal life. My oncologist never came to see me in Infusion. And I never knew a single thing about her. I took that personally. And I see that as a moral as well as a professional failing.

 

Here’s what I have written, I hope it helps. And if you need my help to do any of this, I will volunteer my time.

 

 

 

Thank you,

 

 

 

Fred Reiss

 

ANd my list which is part of Today Cancer, Tomorrow The World:

 

Tips for Oncologists.

  • Don’t do these things with the patient’s file: 1.) Never address a patient while holding up a their file. 2.) Don’t look down at a file when you tell the patient the results of their tests. 3.) When you go over a patient’s file, put it down between you and the patient like you’re both sharing homework.
  • Instead of weighing people in kilograms and explaining tumor size in centimeters, is it too much to ask to use pounds and inches?
  • Sure it’s difficult seeing cancer patients, but instead of getting worn down by this, always remember this upbeat note: we have come to be healed by you. You’re a healer and that’s a wondrous gift that you’re sharing. And that requires creating a relationship with the patient you’re healing
  • Don’t ask chemo patients, “How are you feeling?” Try these questions: 1.) “Have you been able to eat?” 2.) “Are you able to sleep?” 3.) “What fluids besides water have you been able to drink?” 4,) “What activities have you been able to do, or miss?” 5.) “When do you experience the most pain after you leave here?”
  • Tell them they have the option to take preventive medicines before they suffer from side effects, such as mouthwash rinses to prevent or alleviate mouth sores.
  • If they don’t like needles—and who does?—inform them about a medical port, then show them what it looks like, and explain how simple the surgery is to implant it. (Yes, it’s possible to have infections from a port, buy you can also get infections from IVs and nurses can be off some days finding a vein.). And, why not have a brochure on medical ports handed out to patienst when they arrive for their first appointment at oncology. Muy Importante: Some patients don’t speak English, have someone who speaks their language explain a port—I saw too many people who couldn’t speak English who had bruised veins and didn’t know how easy it was to get a port.
  • Ask them about their personal and professional life so they remember who they are, instead of what they have been reduced to. Or where they’re from. It reminds the patient they’re alive.
  • Explain why you became an oncologist.
  • Call the patient at home if: 1.) There is a change in their medication. 2.) They’ve completed their first cycle. 3.) In the middle of their recovery week to wee how they’re doing.
  • Visit them in Infusion to show support. 1.) See patients on their first day of chemo. 2.) See patients on their last day of chemo. 3.) Or, maybe just go there to remind yourself of their suffering so you can improve your care.
  • Acknowledge the high medical costs and tell the patient they might get calls from collection agencies but that the hospital offers financial assistance for them.
  • Talk and listen to the oncology nurses more often, and go out of your way to acknowledge and appreciate their views—plus, reach into your pocket and buy them some doughnuts or chocolate once in awhile. Remember they have better people skills than you—you have things to learn from them.
  • Call patient’s quickly with the results of their tests.
  • Remember just because you were “out of clinic” that day the patient was “in clinic.” If you can’t be there for the patient, make sure someone else has the authority to do it—or, surprise tell the patient in advance who they can call with the results,
  • Inform them that chemo also goes after their nervous system too. And perhaps, add minerals to their chemo hydration that helps reduce the effects of neuropathy.
  • Imagine the patient is your son or daughter, or father or mother. If none of those four choices works, pick someone in your life you care for the most.
  • Don’t expect the patient to ask the right questions, they’re in shock; in other words, give them the answer to the test before they take it.

What a Chemo Patient Can Do To Improve Their Infusion Stay

  • Bring doughnuts to the nurses.
  • Walk into chemo like you’re entering a gym to get stronger.
  • Talk to other people who have had chemo before you take chemo, they can give you invaluable advice on foods, possible side effects or questions to ask.
  • Before you go in for your appointment, make a list of questions with a friend or advocate, and ask all those questions to the oncologist.
  • If you don’t like your oncologist, switch.
  • You always have the right to a second opinion.
  • Remember, no matter how smart or possibly arrogant and intimidating a doctor can be, they still work for you. They are your employee—but always try to be a good patient.
  • Don’t ever think ‘How could This Happen To Me?” or “Why Me?” or “This isn’t fair.” That’s all true but to give into it is self-pity, your anger has to be directed to the disease.
  • Chemo’s effects can be brutal, ask you’re caregiver if you might have hurt their feelings by snapping at them—remember they are upset to see you suffer.
  • When friends bring you gifts accept them and everything they offer, because it’s part of their therapy too. They’re hurting for you.
  • If you can, make an effort to talk to other patients.
  • Ask the nurses why they chose oncology.
  • Find a stylish hat and wear it to your chemo—wear a knit cap at home to stay warm, but don’t wear a knit cap at the hospital.
  • Wear nice clean clothes, stay away from drawstring pants—unless you have to wear catheters.
  • If you have an iPod load it with the music that shaped and inspired you.
  • When you are getting chemo surround yourself with pictures from your life and Get Well cards.
  • Decorate your recliner with colorful blankets.
  • If you can’t read, listened to books on CD or tape.
  • Watch your favorite movies to remind yourself of your dreams.
  • Take nausea medications even if you don’t feel nauseous—if you don’t, when you do get nauseous there’s no way to stop it.
  • Never hesitate with medications, when in doubt, stay ahead of the pain.
  • Call ahead to the hospital the day before your appointment to make sure insurance has approved your procedure or a new drug you are scheduled to receive that day.

How Infusion Treatment Areas can be improved

  • Have pictures in the hallway of people who survived cancer: or, a binder in the lobby with pictures of survivors and letters from them (After all, bed and breakfast places do this, why not Infusion Clinics?).
  • When a patient finishes chemo: 1.) Give them a card signed by all the nurses. 2.) Conduct an exit interview about the foods they were able to eat. 3.) Ask them how their experience could have been improved—or give them a form to take home to answer these questions. 4.) Take a picture of the patient with the nurses around them.
  • Have a lounge area where: 1.) Where chemo patients can gather or socialize instead of remain isolated in their chairs. 2.) Chemo patients can hear lectures or see films. 3.) Eat food. 4.) Hold support group meetings. 5.) Or have private conversations on their cell phones.
  • Have a menu specifically designed for what you’ve found chemo patients can eat and drink. They can order off that menu and have food brought to them by volunteers (after all, nurses aren’t waitresses). If you establish a separate area for meals you don’t have to worry about clean-ups.
  • At construction sites, a lunch wagon pulls up, right? So why can’t their be a cart offering specific meals that can be order and brought5 to the patients at their chairs or a separate room.
  • No volunteers playing harps—stick with guitars.
  • Provide popsicles or flavored cups of Italian Ice.
  • Treat them like they’re in business class and present them with a menu from the cafeteria they can order from.
  • Record your seminars and give people a chance to see them on-line.
  • Give them a card or a token to reduce their caregiver’s cost to park.
  • Have a lending library of books or movies to watch.
  • Try to cut a deal with Netflix or some other service and have iPads or some type of notebook where people can watch movies I think people would donate them or cash to do this; or perhaps the companies who do this would donate their products for use by cancer patients.
  • If you have to have pictures of donors on wards have a nameplate but DON’T list their birth and DEATH dates.

How A Chemosabi Can Get a In The Zone To Take On The Big C

  • See everything you’re going through as a path to a cure.
  • Visualize the tumor as some type of monster and imagine yourself fighting it; or, an example, I try to think of my health cells as the beautiful insides of a ripe fruit and the cancer cells as tiny gray bubbles that look like rubber cement.
  • Remember you have cancer. Cancer doesn’t have you.
  • People want to do things for you, it’s part of their therapy too, so let them give.
  • Don’t be ashamed of being bald, think of yourself as being an enlisted soldier.
  • Be a good patient, but remember the doctor works for you—you have the FINAL SAY in your care.
  • You can’t cure yourself, but you can insist on ways to relieve your pain.
  • Your best weapon to fight cancer is your life, that’s all you go, never forget who you are.
  • Chemo has a half-life. You have a full life.
  • Don’t feel bad about loosing your hair and weight—appearance belongs to another world, valuing those looks is denial. Accept your new combat uniform.
  • When you leave the hospital, don’t think about it. Just think about everything else around you.
  • Don’t see chemo as a poison. See it as a serum.

 

Fred’s Chemo Menu: Perhaps these foods will work for you:

  • Vanilla caramels
  • Soft vanilla ice cream cones
  • Carnation Instant Breakfast (Chocolate, Vanilla, Strawberry)
  • Soggy Wheaties or other cereals, like Puffed Rice or Puffed Wheat
  • Salted bagels or pretzels
  • Popsicles, Creamsicle, Fudgsicles
  • Spicy foods
  • Ice tea
  • Gatorade
  • Protein vegetable drinks (fruit drinks work unless you have sores)
  • Oatmeal with brown sugar or cinnamon
  • Brownies with hash or cookies made with marijuana butter
  • Soups—tomato, sweet and sour, miso, tortilla

Food Tips

  • Use plastic utensils to reduce the metallic taste from chemo’s side effects
  • While getting chemo, don’t try to eat anything you liked before, you’ll never want to eat it again.
  • If you find a food or drink you like, don’t buy a lot of it, because the next day you might not want to eat it.
  • Think of your favorite meals so you have a menu goal—you’re thinking of getting healthy.
  • When you find a food that tastes like it looks, stick with it—it’s like being back in the world.
  • Ask oncology nurses what foods most people can eat during chemo, and ask other patients.
  • If there’s a sauce you like, such as barbecue sauce, slather your food with it.
  • Smoke marijuana before you eat—it’ll animate some fragments of taste.

 

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One Comment leave one →
  1. Laureen permalink
    October 21, 2012 11:56 pm

    Good job Fred! Wouldn’t it have been nice to know all of these things before learning them the hard way!

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