Showing posts with label cancer research. Show all posts
Showing posts with label cancer research. Show all posts

Monday, January 2, 2012

What to Say to Someone with a New Cancer Diagnosis

When you hear someone has a cold or the flu, you know what to say. 
But when you hear someone has been diagnosed with cancer, it’s another story.
What do you say? Should you contact the person right away or would he or she prefer to deal with the horrible news alone for awhile?
I’ve been on both sides of these questions: the person getting a cancer diagnosis (twice) and the person who hears that someone they care about has cancer.
The National Cancer Institute estimates approximately 1.6 million new cases were diagnosed in 2011. Behind each of those numbers is a person who is devastated when he heard the diagnosis and untold family members, loved ones, friends and acquaintances who are also shaken.
So how to react? I know every case is different, But here’s my advice.
First, gauge where you are in the patient’s circle of support. On a scale from significant other to acquaintance, where do you rank? 
When I was diagnosed, I wanted to hear from my closest relatives and friends, but I certainly did not need to hear right away from everyone I’ve ever known. There is that initial stage where you are stunned and you don’t really know much and it’s hard enough to process the news. You don’t want the phone ringing off the hook.
If the new patient has a spouse or significant other, use that person as a gatekeeper.  Text or email is preferable to an interruption. Ask if the patient is up to taking phone calls and when might be an appropriate time to chat or visit.
(Warning: this is not foolproof. One friend of mine was told she had to go through a gatekeeper to contact her newly-diagnosed friend, but when she later reached out directly, the patient, feeling somewhat abandoned, was glad to hear from her. Apparently the gatekeeper was self-appointed and not patient-sanctioned.)
Greeting cards, emails and texts are wonderful ways to tell a patient you are thinking of them, praying for them, pulling for them. Say that you are available if she wants to talk or chat via email or Facebook message. Tell her you will lend an ear if she wants to vent or cry. (And don’t feel slighted if you don’t hear back from the patient. It’s sometimes exhausting to be seriously ill. But rest assured the gesture is appreciated.)
My mother-in-law used to send me a card in the mail about every two weeks when I was sick at home. The greeting always brought a smile to my face and let me know, unobtrusively, of her continued support.
I got a lot of cards, flowers and notes. My husband would pass along messages that he received via email. They all meant so much to me.
Hallmark makes cancer-themed cards, available online or in stores for when you don’t know what to say. A card in the mail with a notice of a donation to the American Cancer Society or other specific cancer charity would be lovely. Cancer charities fund research and offer information and support such as rides to chemotherapy appointments. 
Food or take-out gift certificates are always welcome. When you are shellshocked by the diagnosis, meal-planning is low on your priority list. 
But don’t deluge the person with casseroles and greetings. It’s likely to be a long struggle. Cards, food and e-notes of care will be welcome for some time. Here’s my advice on what to say right away:
Say you are sorry to hear the news and you will support them. Say you don’t know what to say.
Look for cues. Cry with them if you must. Sometimes patients could use someone to cry with: sometimes they are sick to death of crying. Sometimes, the patient just wants to hear someone say, “poor baby.”
Don’t ask too many questions. Make your queries open-ended. “How are you feeling?” “What does your doctor say?” or “What’s next in your treatment?” are better questions than, “So what are your odds?”, “Do they know what causes this?” and “Are you going to lose your hair?”
Chances are the patient does not understand any of this yet. It’s shattering to get a cancer diagnosis but it’s also frustrating trying to answer questions when you are a newbie in the cancer world.
Let the patient bring up details. Some people don’t like to disclose much: others find it cathartic to repeat everything she knows. Allow the sick person to be your guide.


Which brings me to another point: The patient needs to be honest and be frank about what is appropriate. It may change as the fight continues.
It’s OK to say you don’t want to speak to anyone or to limit the subject matter. I was out of phone contact for months while I was hospitalized. When I was well enough to be able to speak on the phone, I remember telling my husband one day that I only wanted to speak to someone  if they didn’t mention cancer. The weather, what the caller did the previous day, movie reviews ... anything would be preferable (that day) to the all-consuming topic of my health.
It’s OK not to want to see anyone. During the hospital part of my stem cell transplant, I said no to some visitors from overseas who wanted to come by my room. When I was homebound, friends would drop food at the door without stopping in. That’s what was needed at the time.
Another suggestion: Ask if the patient wants to be put in touch with a survivor. Almost everyone knows someone who has survived the cancer fight. I found such contacts invaluable. The American Cancer Society can help provide inspirational folks to connect with or you could do that for your friend. 
I have often served as a resource. I don’t force myself on anyone, but if they are open to it, I give them what I call my cancer pep talk.
I say I know they feel like it’s the end of the world. And their families probably do, too. But it’s not, I tell them. In fact, there is no better time to get cancer. Research has come so far and medications have improved. Cancers that not many years ago were a death sentence are not any more. Doctors know specifically what treatment to use for which cancer. If plan A doesn’t work, they will attack it with plan B.
It’s scary and difficult and it will be hard on everybody, I say. And then I tell them of  people I know in recent years who have been diagnosed with different types of cancers, including colon, lung, bladder, prostate, breast, and mine, lymphoma. They are all still here.
If you know of inspirational cancer tales, you can offer those. 
Or feel free to use mine.

Monday, June 20, 2011

Why Donations are Critical in the Fight Against Cancer

Actress Dana Delany gave a moving tribute to her father and friend, Stand Up To Cancer co-founder Laura Siskin, this weekend in The Huffington Post.
She describes how cancer took her father’s life in 1981 and just recently, Siskin, an accomplished Hollywood producer whose Stand Up organization has already raised $200 million for cancer research. Delany, who was at the first  Stand Up TV program in 2008,  laments the fact that decades after her father’s death, some 75 percent of people diagnosed with pancreatic cancer are dead within a year.
Then she makes a plea for people to donate in honor of somebody at the Stand Up To  Cancer website to continue to raise money for cancer research.

I second that idea.
Laura Laughlin at Relay for Life
Donations -- whether they are to the Stand Up fund, the American Cancer Society, Susan G.. Komen for the Cure, or any of the cancer-specific fundraising organizations -- help fund research. 
And I firmly believe that is why I am alive today.
I routinely tell people who have just been diagnosed with cancer, “Be glad you are living in these times.”
We’ve come so far from the days when folks were afraid to say “cancer” out loud (they called it “the big C”), we’ve evolved our approach from fear to fight. And now any diagnosis is not necessarily a death sentence.
It would have been for me a decade or two ago. But, thanks to research, the medical profession has expanded their tools to battle all types of cancer. When I was diagnosed with an extremely rare form of lymphoma six years ago, doctors knew exactly how to treat it, with a specific treatment plan and a specific type of chemo.
They have made leaps and bounds in dealing with the effects of chemotherapy and have a variety of anti-nausea drugs to pick from. Many tolerate the treatment well. While it’s still difficult, it doesn’t have to be a life-halting treatment. I know a friend who continued to work during her treatment and never let on to coworkers that she was battling cancer.








And when my cancer returned a year after I thought it was gone, my oncologists knew exactly which protocol to use, preparing me for a stem cell transplant, which
my lead doctor said was my “only hope for a cure.”
A nurse later expressed surprise that he had used that “c” word. I clung to that.
Three years after that transplant, I am cancer free. Many friends have made donations to Stand Up To Cancer in my name, have raised money in my honor through the American Cancer Society’s annual Relay for Life, or have contributed to the Leukemia & Lymphoma Society at my urging.
Ironically, I got involved with the LLS years ago, when a friend of mine died of lymphoma and my father was diagnosed as well. (He, I’m happy to say, has a non-aggressive form of non-Hodgkins lymphoma and is living an active life 14 years after his diagnosis.) I contributed to friends who have run the LLS annual marathon over the years.
I became chairman of my neighborhood effort to raise money during LLS’s annual fundraising drive.
When I became sick with lymphoma, I was too ill to perform my chair duties.
But our family continued to make donations to LLS. And to the American Cancer Society as friends and relatives continue to Relay for Life. Two years, I walked the survivors lap to kick off the race in our local Relay, but I also raised money. 
I’m not trying to pat myself on the back, but to underline the importance of giving what you can and continuing to give. Perhaps someday you will be the beneficiary of miraculous strides in the cancer wars.
Research is vital to fighting this horrible disease. For my non-Hodgkins lymphoma, the LLS  spent $16 million out of the $72 million spend last fiscal year total on research. Over the years, this research has helped develop new and better chemotherapy drugs. One of those was Rituxan for use on non-Hodgkins lymphoma, a drug that was part of my chemo cocktail. The society says that drug alone has raised the survival rates to double what they once were for non-Hodgkin’s lymphoma patients.
To all those people before me who contributed to charities that supported this research, I thank you. While we are far from eradicating cancer, we are on the right path. I am living proof.