Monday, October 27, 2008

What to say to cancer patients -- and what not to say

One of the most unbelievable things about this whole experience is the amazing things that people say, including loving friends and family members. Our job as patients is to accept the gifts of love and support, forgive the insensitive, and block out the negative. With the aim of blocking some negative juice today, here is what to say to a cancer patient:

1. I'm so very sorry.
2. I understand that's a really hard thing to go through
3. Wow -- that must be really difficult to face!
4. I'm really sorry.
5. What can I do to help you? (more on this below)
6. You'll be in my prayers every day/you'll be in my thoughts/I'll light candles for you.
7. May I add you to my prayer list? (Please ask and receive permission before putting a cancer patient's name on a public, published list).

And here are some examples of what NOT to say. These are things people have actually said to me:
1. Well, it could be worse.
2. My friend had a radical mastectomy and went back to work the next day.
3. You must have brought this on yourself.
4. Oh, that's no big deal these days! ( I can say this -- you don't get to)
5. You need to get treatment at a better place...those doctors are idiots.
6. My friend had that and she died in three weeks.
7. Oh my god! (Movie star) got that from drinking from plastic bottles!

Here are some things you can do to help your friend who has cancer. Many people find it hard to ask for and receive help, so you may have to ask several times. If you offer, deliver.
1. Offer to pick up and organize a playdate for a child, if the child and parents know you
2. Offer to bring dinner. Remember that cancer patients may have stringent dietary restrictions -- ASK first before showing up with dairy, caffeine, sodas, red meat, fat, sugar. Please don't bring something for the family that the patient can't eat.
3. Get together with friends and pay for cleaning service.
4. Ask if you can drive the patient to the doctor, to the physical therapist, etc.
5. If it seems relevant and you are able to offer it, ask if the patient needs financial help.

Later: "Anti-Cancer: A New Way of Life," an amazing new book by David Servan-Schrieber

Sunday, October 5, 2008

What is a Great Patient?

You may be wondering why I call my blog "The Great Patient." We know that having a good "attitude" is an important part of the cancer-battling arsenal. But what does that mean? It means willing yourself to have a positive, hopeful outlook in spite of pain and the temptations of despair. It means trusting your caregivers. It means forgiving your friends and family. It means finding healing even as your team announces one more bit of big bad news. Let me tell you how I got started.

In April of 2007, I broke my arm in a really awful way. I'd just learned that I was being "transferred" to another part of my institution, and in the process was to lose my title, my staff, most of my responsibilities, and my office. My new home would be an anonymous cubicle in an anonymous building. I was pissed off. To top this off, neither party to this arrangement was willing to pay to move my meager belongings from one side of campus to the other, so I offered to move myself. In my rage that day I wasn't careful. I climbed up on my rolling office chair attempting to pull my beautiful mobile from the ceiling. The chair scooted out from under me, my feet went six feet in the air, and I landed hard on my wrist, smashing my radius. It looked so horrible -- like some deformed thing that was no part of me -- that I went into shock. During the next few hours I experienced what was by far the worst pain of my life. I shook and sobbed and begged for more medication. In the midst of this, the orthopedic resident came to visit me and discuss my initial treatment. He looked to be about ten years old, and I wanted to ask him, "Will your mother or father be assisting you when you reduce my arm?" Instead, I asked him how long he'd been a resident, where he'd gone to medical school, and how many times he'd done this procedure (which involves twisting the bone back into place and then setting it). "About a hundred times in the last three months," he replied.

At that moment, and I'm still not sure why, I decided to trust this young man and his training. I knew that the surgeon he reported to was one of the best in the country. "Let's roll," I told him. They wheeled me to a large, vacant room and attached my fingers to wire net traps. They hooked these to a metal coat-rack looking thing, and then suspended sandbags from my upper arm to pull the ends of bone apart. The resident also asked another resident to hang her full weight from my arm to separate the break farther. Then, using ultrasound as a guide, they began to pull. That was not so bad as the injection into the bone end. Actually it felt better after the bone was straight, although we had to do the procedure twice. A week later I was off for surgery. I was terrified, and wept like a baby when the nurse assigned to me came to put in an IV. The anesthesiologist, also looking ten years old, offered me a nerve block to deaden the arm for surgery. This, she explained, would entail sticking a needle in my neck. Again I cried, but she told me she'd make sure that I didn't feel anything. She was good, and she was right. The next thing I knew I was drooling and laughing and joking with all the residents, including the one who'd set my arm the week before. When I came out of surgery and went home to begin recovery, my arm was like a dead fish in a sack for the first 24 hours. Then the pain set in. It was amazing, and none of the medicines worked to take it away. In addition, when I called for more the staff acted like I was some derelict drug addict, which made me very angry. But the worst were the exercises: my surgeon told me if I did them I might recover 75% of motion in my right (dominant) hand and arm. Because I love my riding so much, and because I didn't want to lose the use of my hand, I began to do them as the physical therapist directed, six times a day. It hurt so much I had to take pain medication just to do them, and I cried. But I did them, every day, seven days a week. Sometimes when I couldn't open a can or use the key in the front door or type on the computer I got frustrated. On other days, I thought I might be able to get along using my left hand after all. But I kept doing the exercises, and after four weeks I went to my own physical therapist to have him help me restore function to my upper body as a whole.

Lo and behold, after six weeks I had restored 100% of motion to my hand. It would be many months before I got my strength back -- I couldn't get on a horse until three months had past, and by then the rest of my body was a mess -- and many more before dexterity returned. But according to my surgeon and his staff, I was not only a good patient, I was their "poster child." I'd come to know the surgeon, the residents, the nurses and staff, and to respect and admire their dedication and abilities. I'd done what they said, and it worked! But I would never be the same again.

Not long after that I began volunteering in our hospital's emergency room. This hospital accepts anyone and everyone who comes through the door, regardless of their ability to pay. On a given Monday, my shift, we might have have a man bashed in a construction accident, a teen who lived in the homeless shelter and tried to commit suicide, a family of migrant farm workers seeking help for their dying baby, and an assortment of prisoners from the local jail. In addition, we'll have a compliment of university professors and students, and a smattering of our area's wealthiest, most entitled residents. My job is to act as liaison between the families and the patients and the caregivers, to help the nurses and staff as I can, to visit with patients, and to offer a kind, calm word to anyone who needs it. Most of the time I'm running -- it's quite a workout, physically and emotionally. Every time I pray for the doctors, the nurses, the staff, and the patients: that God will guide their hands and their minds, on the one hand, and that God will console and heal them, on the other. In almost a year no-one has ever died on my shift, so call me crazy, but I think prayer works. I've seen a gun-toting survivalist patient rep, who believes in Nostradamus and the danger of terrorists, speaking with loving kindness to an elderly drunk who's soiled himself, and the next minute pop a pregnant gang member in a wheelchair and run with her upstairs so she can deliver her baby with the best doctors on the maternity ward. I've seen doctors and nurses, aching with fatigue, pull themselves together and dedicate themselves with incredible focus to one more, and then one more, and then one more patient. I've seen that it's a miracle to find pizza in the staff lounge. I've served many patients and families their only meal of the day, a poor turkey sandwich and fruit cup, with a ginger ale and a waxed cup of ice, and you would think they were dining in the finest restaurant. Have I seen mistakes made? Of course. Have I seen patients neglected? Not usually, but yes, on occasion. We have to knock some heads sometimes. But mostly, overwhelmingly, what I see is good.

In any case, along the way I fell in love with the medical profession, and I hope you will too. It's the only chance you've got.

Saturday, October 4, 2008

Being a great patient

This blog is intended to help those of us who are going through cancer treatment experience the very best in care and achieve the highest outcomes. I'll write about my experience with invasive breast cancer, and share ideas about:
  • how to find the best care providers and how to work effectively with them
  • how diet and exercise affect our treatment and recovery
  • mental health and spiritual development
  • families --especially children -- and cancer

I am a practicing Christian but everyone is welcome on this site, whatever your religion or personal faith journey. I support positive thinking and those who promote it; I will delete blog comments which are rude or hateful. I look forward to hearing from all of you and wish you wellness of the mind and spirit.

Photo: detail of Ryan MacDonald's piece, "Before the Disaster, #13). The complete work can be viewed at