7 Rules You Should Follow When Visiting Someone With Cancer

Courtesy HAAP Media Ltd.At the stroke of midnight, 01 January, 2014, US Census Bureau statistics tell us that the population of the USA was 317,297,938. The American Cancer Society tells us that in the year 2014, 16 million out of those 317 million people will be diagnosed with cancer.

Half of all men will get cancer during their lifetimes

  • One-third of all women will get cancer
  • Three-quarters of all cancers strike after age 55
  • Fourteen million people are living with cancer; as survivors or current fighters
  • 1500 people die from cancer every day
  • 600,000 lives are lost every year

My brother Michael lost his life his life in 2012 to oral squamous cell carcinoma. Me, I’m one of the fourteen million survivors.

The numbers are clear. At some point in your life, you will want to visit a friend or loved one with cancer. It is scary as Hell. What to say? What to do? How do I help? We want to help, but we don’t know how. What are the rules for a visit with a cancer warrior?

My Seven Rules for Calling on the Cancer Warrior.

1)  Make absolutely, positively, 100% certain you are healthy.

Whether from the chemo, the stress of the illness, or their cancer itself, many cancer patients have compromised immune systems. A little bug or a sniffle that might put you a bit under the weather could have serious repercussions for the health of a cancer patient. Even without your bug raising serious problems, a cancer patient already feels lousy enough. Keep your sniffle-ly nose to yourself. If your kid stayed home sick yesterday because of some norovirus, stay home.

i)  Wear clean clothes. Your favorite sweater, the one a little kid goobered on yesterday in the queue at McDonald’s whilst you weren’t looking, might still harbor some Klebsiella or H. Influenzae.

ii)  Wash in. Wash out. When you enter the house, wash your hands properly with soap and running water for 30 seconds-that’s singing Happy Birthday through twice. Or use hand sanitizer. Wash them again on your way out. It’s a good practice.

2)  Make contact in advance.

My brother and I were as close as brothers can be. Yet, when he was deep in his cancer fight, I never dropped by. One, it’s just rude. Two, you never know what kind of day your friend is having. Michael really liked to make those contacts via text message. To a cancer patient, a ringing phone, when your pain and discomfort have just settled down enough so you can nap, is a huge and unwanted intrusion. Send a text. You might not get an answer. Don’t drop by ‘just to see if everything is all right.’ Most likely, your friend is getting some sleep.

Cancer, and cancer treatment, are exhausting beyond words. How exhausting? Picture yourself as you lie on the couch with your face turned towards the seat cushions. You hear something interesting on the TV. Now, try and imagine that you lack the energy to turn your head towards the TV to see what is on. Yep. That bad. Sometimes worse.

3)  Time limit your visit.

When you text to see if there is a good time to visit, give a limit.

“Michael, is there a good time today or tomorrow for me to stop by for a twenty minute visit?”

When those twenty minutes are up, get up and go. If your friend wants you to stay longer, s/he’ll let you know.

Even when we have cancer, when someone visits our home, we feel as if we are the host. Just to burn the mental energy required to be “the host” is a huge drain on very limited psychological resources.

4)  Contact the caregiver about gifts.

Before you bring anything with you, contact the patient’s caregiver. Radiation and chemotherapy play havoc with the senses. What to you is a lovely scented bouquet of flowers might kick off three hours of retching and vomiting for your friend. In addition, many people become highly sensitive to pollen during treatment. A plant might be nice. But ask.

We like to feed our friends and family when times are tough. Ask if there is anything special you could bring, and anything specific you should avoid. Just because your friend liked your lasagna two months ago, the smell of the tomatoes and basil might send her reaching for the waste bucket.

When Michael was ill, I brought him DVDs. He was a huge baseball and Detroit Tigers fan, so I brought him highlight DVDs from the Tigers amazing 1968 season. We were little kids then, just starting to fall in love with sports and our heroes. I also brought him Rocky and Bullwinkle videos. Mindlessly funny stuff. Norman Cousins, in his great book, Anatomy of an Illness, wrote at length how the Marx Brothers, Laurel and Hardy, and the other great comedians of his youth helped him heal during his bouts with ankylosing spondylitis.

“I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep,” he reported. “When the pain-killing effect of the laughter wore off, we would switch on the motion picture projector again and not infrequently, it would lead to another pain-free interval.”

5)  Avoid forced optimism.

Don’t be a cheerleader.

“You’re going to be fine. I just know it.”

“Bullshit,” says the patient. “I might freakin’ die. That’s why they’re bolting my head to that goddam table and irradiating my skull. That’s why my body is slowly being carved to pieces. That’s why I get bags of ugly yellow chemicals pumped into my body. You don’t know shit about my illness. I’m laying here, feeling like if I blink 2% too hard, my eyeball is going to fall out of my face, and if I swallow without thinking on it first, I’m going to be curled up in a ball in the bathroom for the next two hours heaving my guts out, while I try not to have shit come pouring out my asshole, and you’re sitting there telling me ‘You’re going to be fine. I just know it?’ ”

“What the fuck do you know? Get the fuck out of here. Jesus, you fuckingidiot!”

Don’t play pity poker. Don’t tell a story about your cousin who’s a cancer survivor. Fact is, in the midst of my cancer, I don’t care. I’ve got my own problems right here, thankyouverymuch. When I was struggling with my melanoma, I found inspiration in an older friend who was fighting a much worse case of esophageal cancer. As cancer fighters and survivors, we’re good at finding our own inspiration. Hang out with me, that’s all I ask.

6)  Physical contact. Ask first.

Cancer hurts. Sometimes, the pain cannot be imagined. Sometimes, a hug can be agony. Sometimes, you need a hug, a bit of human warmth and contact to remind you that you’re not alone. So ask before you hug. Pro-tip: Use your friend’s hug as your guide. As I was leaving my brother’s house, I’d always ask Michael if we could hug. When he said yes, I’d let him move towards me, and as firmly as he hugged me, I’d hug back, but just a bit softer. If you opt for a hand-squeeze, be just as gentle. Hard to believe, but some cancers cause such deep-seated bone pain that even a too-firm yet loving squeeze of the hand is agony.

What Should You Do?

7)  Be there now.

Ram Dass titled his seminal 1971 work Be Here Now. When you are with a cancer fighter, be there. Turn off your damn phone. Your twitter feed can wait. If your friend wants to talk; Talk. With. Them. Listen, really listen, to what they’re saying. They’re talking with their eyes, and body language, as well as their words. Pay some fucking attention. They want to watch a little TV with you, then watch some TV. If they want to lie back for a few minutes and take six or eight deep breaths, why don’t you join them? Lower your shoulders from up around your ears, relax a moment, and join them in several deep quiet breaths.

You do realize, don’t you, that you too, are stressed? You do realize that your angst fills the room? It is hard to watch someone suffer, someone in fear, someone in pain. Let your heart fill with compassion, not pity, and join with them in your heart for a few moments. Don’t share your heartache. Let go of your pain and watch them relax along with you.

In the Torah, Jews are commanded to perform acts of lovingkindness. Buddha says “He who attends on the sick attends on me.” In the Christian Bible, Jesus commands his followers to care for the infirm. The atheist cares for the sick because there is no greater service to humanity than to care for the sick.

Be gentle. Be kind. Be compassionate. Be there now.

My new book Melanoma: It Started with Freckle will be published in spring, 2016. To read excerpts, get updates, and hear blurbs and readings, LIKE Melanoma Book on Facebook.

You can also follow on Twitter. @MelanomaBook

Thank-you.

Comments

The Beginning
About David Stanley

Teacher & science guy, writer, musician, coach, skier and bike racer, I am interested… in everything; your story, food & spirits and music and everything in the natural world, spirit & sport. My son is 22 and still needs his Dad. I am 56 and so do I.
I blog on life and death, cancer and sports, kids and education at http://dstan58.blogspot.com/

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Comments

  1. The DaddyYo Dude says:

    Great, great, GREAT read David. I can identify with every last one of these. I usually enjoyed the company of friends during my fight, but not if it was unannounced. I liked to know so I could plan naps accordingly, and be rested when they came. Or so I would be able to give notice if I wasn’t feeling up to it. A lot of times, we ended up putting a “Do Not Disturb” sign up on the door and not answering for anyone.

    I especially love the part about forced optimism. Yes, everyone wants you to have a positive attitude. But it’s not always gong to be that way. I had, in fact several times, told my wife I was done with treatment. I’m not doing it anymore. This shit is killing me worse than the cancer. Those days, having someone tell me someone else’s story, or try to bullshit their way through comforting would just send me over the edge.

    I’m sharing this post everywhere now. Great stuff as always!

  2. David – Really loved your post. My wife lost her mom to pancreatic cancer a few year ago. In just 4 months we went from finding out to grieving her loss. Some great insights. In the Book of Job in the Bible, Job’s friends sat in slience for 7 days just being present as their friend mourned. They fulfilled the “Be There Now” concept. Again…great insights.

    • Roy, I am sorry I did not see your post earlier.I appreciate the Book of Job reference. Good stuff. thank-you.

  3. Joyce says:

    Thank you for this piece. Sometimes it can be a bit overwhelming to cope with a disease and everyone’s concerns at the same time. When I went through chemo to treat my ovarian cancer, I opted for a more peaceful time to accept infusions…overnight. There are just times, especially while being infused, you want to be alone.

    • Brilliant solution, Joyce. I can see how taking chemo at night could be clarifying. Thank-you.

  4. I really enjoyed and totally agree with all the points you made. Especially being 100% healthy when you come around. I have had a few people with a runny nose and their excuse was: ” I am not sick, its just allergies” … I don’t care if its allergies or a cold, either way you are spreading germs near my son who is fighting for his life.., Please go away, we will FaceTime you later !!!

    I like to add respecting the families privacy is also so important.

    • Respect might be at the top of the list, don’t you think? Everything we’ve all said about cancer fighters comes down to respect. Thank-you for joining the discussion.

  5. Hazel says:

    My husband died very suddenly of Acute myelogenous leukemia, he had a stroke and went into a coma within 24 hours of being diagnosed, total organ failure in two days and no treatment was available, two days later he died. Cancer can be quick! Be thankful that you are well enough for treatment! It was and is wonderful the support I have received from family friends and people whose life he touched, but I am so fed up hearing how many other people they know who have died recently, I am not yet ready to care about people I do not know. Sorry, but please be supportive and remember, the family need all their energy to concentrate on just their loved one.

    • Thank-you for sharing such personal information, Hazel. I feel your loss, and I truly appreciate your last sentence.

  6. patches18 says:

    I can relate to your story.It used to make me so upset when my friends would tell me your going to be fine just keep fighting.I would think to myself oh lucky you told me that because I didn’t know I was supposed to fight this.Good thing you stoped by because I was just going to lay down and die but now I know.And I hated the look of pity on everyones faces.People just can’t understand how tired I got after chemo.There are no words that can explain it.Iv’e been in remission for 6 years now.I had non hodgkens lymphoma stage 4.After 6 months of chemo and then a stem cell transplant I’m still here to enjoy my grandchildren.GOD has blessed me with another chance at life.Thank you for your tips.I hope they help a lot of people.

    • Well-said, Patches-18. Well-said. Pity serves no one. Thank you.

      • Rita Southern says:

        My mom was diagnosed with Pancreatic Cancer Stage 2B in April of 2014. Within 2 weeks they operated and removed so much! After 10 1/2 hours the surgeon came out and told us that it was a mess, but that he was able to get it all. It took her 12 days before she could come off the ventilator. She took chemo for 6 months after that. She was cancer free for two years and it came back in per pancreas and her right lung. One round of chemo and no change. 6 radiation treatments the tumor in her right lung is gone. Now they are focusing on her pancreas. She has started jerking really bad, not able to walk or hold a glass, and her left breast has begun to swell 5 times its normal size. She had developed a bad bacterial infection in her port and they had to remove it. Now she is dependent on a PICC line and has developed MRSA from the infection in the port.
        In the beginning I pushed her to try every thing I could find and order that would possibly “cure” pancreatic cancer. I couldn’t bear the thought of her not wanting to try whatever would possibly giver her a chance of living longer. I have finally had to accept that fact that I have no idea what she is going through emotionally or physically. I live and work about 700 miles away and it is killing me not seeing her everyday. I call her 4 to 5 times a day. I listen to her cry and we talk for hours with her telling me that she doesn’t know how much more she can handle. I have had to come to the realization that I can’t fix this. I have always been the one that has had to be independent and strong over the last 30 years. If there was a problem, I fixed it. Right now I fell like a 12 year old that doesn’t know what to do. I have told her that whatever she decides regarding treatment and her cancer, that I will be there and support her in whatever way I can and even though I may not like it, it is her decision and that I understand. I have never felt so helpless in my life.

        Thanks for listening. I just needed to tell this to someone.

        • I am glad you found a place to share your feelings. Pancreatic cancer is so difficult. All of us at DRT wish you peace.
          David Stanley.

  7. Jennifer says:

    Beautifully said – all SO true.

  8. Rebecca Greenwood says:

    Please don’t tell me about your brothers, sisters best friend who lost their battle.

    I didn’t want to hear about the nutritional diet I was embracing was not proven to help

    Just tell me about what’s going on in your life

    I know people mean well, but my experience is mine. Allow my doctor , my family and myself how to deal with it.

  9. Gillian says:

    I have two things to add. The first one is don’t send books or emails about miracle cures for cancer. We have a friend who used to text my dad one or two a week, and though it was nice that he cared, it really didn’t help the situation. The second is ask before you bring over food. After his surgery, we had enough meals for two or three weeks and there were only two of us home even somewhat regularly. While it really was appreciated, he honestly didn’t feel like eating anything and we felt bad throwing so many meals away.

    • Exactly, Gillian. My brother had to cut several people off because of their insistence to take charge of his treatment via miracle cures and diet. Michael made his own decisions his whole life. He was not going to hand over his most important life’s decisions to casual friends.
      thank-you.

      • Roberta says:

        I have read with great interest the many articles and insights you have shared. At the mention of food, I remembered, many years ago, what a close family friend shared with me during her mother’s last weeks of terminal cancer. She said so many wonderful caring friends had brought wholesome dishes and meals, that she and her siblings were actually craving just a juicy hamburger or a steak and fries. So they made a deal that the sisters would stay and be with their mother while the brothers went out to indulge. The following day, the roles were reversed. This was a revelation that a great gift could be some gift cards to a favorite restaurant or cafe for patient (if able) and/or family to use at their choice of time.

  10. Melody Lee says:

    This is one of the most accurate articles I’ve read regarding the journey of cancer. When I had my brain tumor removed we had to stop accepting phone calls and ask people not to show up at the house. One friend told me she was hurt because I would not accept her call! She was hurt?! I endured radiation and chemo and gained weight. The chemo drained my energy levels and i could no longer work out daily. Every day is a journey. I deliberately stopped attending some classes at church because they wanted me to participate in events I no longer had the energy to participate in. I am sharing this article in the hope some people will understand what it means to go through this journey. I honestly think they mean well but my patience for enduring the learning curve is now in the negative. I have one more round of chemo to go and to this day, I still treasure my quiet moments/time. I don’t think I will ever be the same again.

    • Melody Lee- thank you for sharing your thoughts. I remember feeling the same- we gain a perspective on life that other people won’t have. You said it very well. ” I don’t think I will ever be the same again. I agree 100%. thanks again.

  11. Carol Morrison says:

    My husband passed away from metastatic colon cancer at 50, 5 yrs ago. I agree with all of your article. My advice: if you really want to help a loved one but don’t know how, don’t make it their responsibility to ask for help…mow the lawn, make a meal, clean the garage…whatever! It will be appreciated and you will feel like you really helped.

    • Carol, I am sorry for your loss. Your advice is great- when my brother was really sick, the sisters and sisters-in-law, all pitched in to handle all the inside housework. The guys were shunted to the outside work, but we all just did what needed to be done. Great suggestion. thank-you.

  12. Paul Leingang says:

    Great article! My dad passed away 4 years ago from glioblastoma IV. I completely agree with everything. Two things I would add:
    1. Don’t try and tell them about something they should be doing. I.e. Someone told my dad that he would have more energy if he got a recumbent bike (he could barely walk at this point). All it does is possibly put an idea in their head that they are doing something wrong in their treatment.

    2. Address the elephant in the room. They know they have cancer. Pretending like they don’t only makes things awkward.

    • Spot-on, Paul. I agree 100%. My brother, in his last fall, once said to a friend of ours, “Yep, I got cancer. It’s not good right now. Do ya think the Tigers are going to the Series?” thank-you.

    • Pam says:

      Paul, my husband past away at the age of 43, one year almost exactly after being diagnosed with Glioblastoma Multiforme. I am sorry you lost your father. We had three daughters in their teens when he died. It’s been 10 years this May but it could have been yesterday. I think the worse part for him was having idiots tell him to eat this or try that, go to this clinic or fly to this country. We traveled the Bermuda Triangle of GBM’s, the best neuro oncology hospitals in the country, don’t you think we tried everything? Why would people be so cruel? And the absolute worse part was when people referenced his “battle”, this inherently puts the patient in a losing position. 10% survival rate is nothing you want to “fight” with. He actually instructed me to list that he had passed after a long slow dance with cancer in his obit, not a word about “losing” or “battle”. And lastly, being so young, our friends mostly stayed away. I was told that it was probably because of the overwhelming spotlight his illness put on their own mortality. Fuck that shit, go see the guy you spent twenty years working with and hold his damn hand for a second. It won’t kill you. I’m sorry to rant personally to you Paul, but I feel a kinship to fellow GBM families. I wish you the best and I hope you have all the support you need to cope with the loss of your father.

      • Pam- thank you for reaching out to Paul. Every bit that adds to the conversation helps us all.

      • Brad the Dad says:

        “And lastly, being so young, our friends mostly stayed away. I was told that it was probably because of the overwhelming spotlight his illness put on their own mortality. Fuck that shit, go see the guy you spent twenty years working with and hold his damn hand for a second. It won’t kill you.”

        Damn straight.

  13. Tammy says:

    My mom had lung cancer that spread to her brain and bones or vice versa, but the truth is, no one kind of cancer is better or worse. She was sick and tried her best to put up a brave front. I just took it day by day with her and let her lead the visits. Sometimes the hard tasks of sitting while she rested was the most rewarding. The patient should not feel bad for the way they fight or try to deal. It’s their battle and as loved ones we often want what’s best for us in their battle. Put feelings aside because you never know how you’d fight if it was you and not them. I cherished each minute I got when I checked my emotions at the door.

    • Well said- “Let her lead” and “check your emotions at the door”. Two really good things to keep in mind. thank-you.

  14. Tad Verret says:

    Lost my Dad to lung and esophageal cancer in 2008. Lost my little Brother last spring to Liver cancer. My Mom had a stroke and passed away at my Brother’s Memorial service. My wife has just been diagnosed with non-Hodgkin’s lymphoma. Thanks for helping me understand what’s going on in the Cancer Warrior’s head a little better. I am sharing this every where I can….Thanks

  15. Tad, My thoughts are with you and your family. Thank-you for your kind words.I wish you peace. Be well.

  16. Lara says:

    The best were people who emailed me to see either when was a good time to come by, what they could bring for dinner (and would I be up for dinner even), and just to say they were thinking about me. The worst were the people who kept calling until I picked up and who insisted that they needed to come RIGHT NOW to see me to make me feel better. And were offended if I told them it wasn’t a good time–either I needed to sleep or I felt like crap and didn’t feel like company just then.

    Oh, and the people who said, “Oh, you get a double mastectomy! That means insurance pays for a boob job, right?” Like anyone would choose to have scars all over, no feeling in their chest or upper arms, the severe pain of reconstruction, or the worry of cancer coming back elsewhere??? And the complications of infection that landed me bck in the hospital. This is no boob job and nothing that any sane person would choose.

    • Lara- People who don’t know what to do, or what to say, I believe, are the prime offenders. I don’t think they are malicious. Just clueless. But everyone is different – maybe they’re just asshats.

  17. Barbara Bird says:

    I lost a breast to cancer while my mother was going thru her own battle with ovarian cancer. I never told her, because she would have stopped to take care of me. I explained my hospital stay as a lumpectomy and exhaustion (I had been working 60 hrs/week before at my job).

    We Children each took turn watching her and there were times she would tell us to just let her sleep. Or if we were at the hospital when she was taking chemo she would say, “you can go home now, I’m going to sleep. But I will see you tomorrow when you pick me up”. We always let her be our lead. She fought very hard for two years and I kept thinking she was just too tired to keep going at the end.

    My mother lost her battle, but I’m a 25 year survivor. I didn’t opt for the rebuild, but I used to tell people I could play something that very few could. Boob-Ball (to close friends it was “tit-ball”). While visiting an elderly uncle and his wife they felt uncomfortable and kept sneaking peaks at my chest, so I took the prosthesis out, put it in my uncles hand, nipple down, and said “bet you’ve never seen one of these from this angle”. He laughed and they each examined it and handed it back to me. All was well after that. I lead that time to ease their curiosity and maybe their fears.

    Everyone, and every cancer is different. Thanks for your article. And thanks for listening to my two stories.

    • Lara says:

      Barbara, with your breast cancer and your mother’s ovarian cancer, have you been tested for a BRCA mutation?

  18. Robin Rohrer says:

    Hello David-I truly appreciated your post I am a first time reader. So many members of my family have died of cancer in the last few years although my 19 year old daughter is a 15 year T cell leukemia survivor. It was incredible what insensitive things like “you must be brave” that people can say to a four year old with cancer. Most recently my brother, my only sibling, died of bladder cancer on his 51st birthday December 13. During his one year battle we met so many well intentioned people that just didn’t get it. I feel truly blessed by the hours, days and nights I was able just to be with him.
    Robin

    • Robin, thank-you for joining in. In general, I think people say insensitive things because they truly don’t know what they should say. It’s their fear being manifested. As you said “well-intentioned.” Thanks again.

  19. Janet C says:

    An excellent compilation!!! It should be required reading in every cancer hospital.

    Having just spent the last year of my life in a competition with ALL (leukemia) I have to say the most irritating energy-sucking thing I had to endure on a regular basis was the constant demand for “What do you need?” “What can I do to help?” “What can I send you?” I had some relatives really offended when I couldn’t supply an answer every week, couldn’t fulfill their desperate need to help. I just felt bombarded and barraged with way too much attention from the hospital/doctors/nurses/roaming clowns/physical therapists/treatment dogs/do you want a cup of coffee or newspaper or coloring books (??) volunteers. To be peaceful was the one thing I wanted/needed most and no one was able to give that to me.

    • Cancer has not effected my life yet, but I am grateful for David in writing this piece. Many people don’t always know what “helping” looks like. Sometimes, it is more helpful to do very little, and just be available. Janet C said it earlier that people have a “desperate need to help.” But what their idea of helpful can actually trigger stress when it is not done correctly.

      This is a beautifully simple compilation that illustrates one simple truth to me: CANCER SUCKS, and it has touch many lives. My mom survived Ovarian Cancer when I was in HS, but it was benign. I have done Relay 4 Life, and have seen the effects of Cancer in who has been left behind. I commend you all and will continue to share this list with everyone.

    • People want to help, Janet, and they don’t know what to do. Our good selves want to be useful, but most of us don’t realize that sometimes just BEING is plenty. thank-you.

  20. Debbie says:

    It’s good for a caregiver to make notes of days/weeks events and update via e-mail or website provided by hospital and/or dr’s office, then notify friends and well wishers of the sites where they can get updates on the patient. Saves the patient from feeling like they’re obligated to talk when they don’t feel like it or have sores in their mouth from chemo treatments, and it hurts to talk. Keeps them from repeating themselves over and over. When the patient feels up to it, then they can read messages from well wishers. This is also a good place to inform if the patient is able to receive visitors or not. Everything should be done under consideration of the patient! Thank you for putting this out there! So many people suffering from cancer, people need to be made aware of what to/not to say, what to/not to do, what to expect.

  21. deb says:

    I am a two time stage 4 cancer survivor.
    1988 10% chance of survivival 5 years
    1997 20% chance of survival 5 years
    Yet by the grace of God and a loving husband I am here. My son who was 14 in 1988 has grown up and had 4 beautiful children who I cherish. My step daughter has married and given us 2 more adorable boys and number 3 is due in 4 days!
    Here is what I have to say about THE 7 RULES for visiting a cancee patient! Go! Clean their house! Shop for them! Fix them breakfast, lunch or dinner. Climb into bed with them and tell them you love them dearly. Watch cartoons all day long! You may never get another chance to heal a human being.

    • darn that’s good! “Climb into bed with them and tell them you love them dearly. Watch cartoons all day long! You may never get another chance to heal a human being.”
      thank-you.

  22. Mindy Thunman says:

    People say stupid things. We’ve all done it. I learned early on that everyone deals with this in their own way. I learned to ask for what I needed whether it was peace and quiet, hugs, silly cat videos on Facebook, cinnamon scones, or no more text messages and daily emails with very heartfelt messages filled with their “thoughts and prayers” (these made me feel like I was DYING and not simply working through a speed bump). People still managed to say the most ridiculous things despite my attempts to be clear about my needs… stories about friends who died “but their case was so different than yours”, or my least favorite “maybe your hair will come back CURLY!!!” At this point I knew I had a decision to make, I could be angry, hold a grudge, or simply realize that they didn’t know what to say, and be grateful that they were at least trying. In my opinion, silence was the worst thing and I did have a few friends just totally disappear! So yes, I love this article, and it’s great to share in hopes that people can be taught! But…there’s no magic pill. People will still say stupid things and really, it’s up to us to look for the best in them and move on.

    • Well-said, Mindy. As a friend once said about the people who say “dumb things” “I try hard to find some compassion for them. But, dang, it ain’t easy.”
      thank-you.

  23. I have survived pancreatic cancer for 3 years now. I never commit to anything, except doctor’s appointments. There are good mornings and there are challenging mornings. The challenges are the times I feel I cannot leave the house; just need to stay close to indoor plumbing.
    One thing that could be added to the list: If you are religious and want to pray with and/or for the patient, ask first. “May I pray with you?” If the patient is OK with it, keep it light and keep it short. I’ve had people pray with/for me and they go on and on and on to the point where I want to scream, God knows! Why do you need to repeat yourself? I’m not a churchgoer myself; I believe religion is man-made and that God has a sense of humor.
    So if you offer, remember the recipient can opt OUT. It is their choice! Remember that the cancer may feel he/she has very little control over their life, allow them to pick and choose. Do not push your religious agenda! It’s the best way to get yourself kicked out and placed on the ‘NO visits’ list!

    For my friends who may see this post, I love you but allow me to LIVE my LIFE as I see fit. Stop pushing all your ‘remedies’ at me. You can suggest stuff and leave me a brochure but if it’s something costly, I see it as snake oil. Don’t go buy something and expect me to take/use it. What works for one, may not work for ME.

    Thank you for posting this list. I have a couple of doctors who try to tell me how much time I have left. I am deaf to their words; neither is GOD and it ain’t up to them! Doctors who even state timelines should be shot. If a case is hopeless, say so but don’t give timelines unless you are damned sure the patient is dying.

  24. LeeG says:

    Thank you for voicing what I could never say to my friends and family! #5 is spot on!!! I will never understand how anyone could think that hearing about other people dying from cancer was possibly in any way going to make me feel better! Breast cancer invasive dc stage 3C tried its best to beat me at age 39 but I’m still here 6 1/2 years later and no longer afraid of hurting someone’s feelings – if the ugly beast dares to come back, it won’t be the only “thing” I will kick to the curb! God bless all the fighters, survivors and caretakers out there.

    • You get one heck of a sense of perspective via cancer, don’t you, LeeG? Nice stuff, Thank-you!

  25. AnnaTaty13 says:

    I am 17 and for almost two years now my mom has been fighting uterine cancer that spread to her liver. I think that something should be written about talking to the family as well, I am constantly bombarded with people wanting me to relay a message to my mom. Also my family jokes that there is a memo in the teachers lounge at my school about my mom because as soon as I got a new teacher he found out within two days of starting. I hate the way people look at me once they find out about my mom, I see the pitying looks and every walks as if walking on eggshells around me. I miss being treated normal and not like might break. I did not write this because I want sympathy I wrote this to aware people to not treat the cancer patients children any different.

    • AnnaTaty13- I’m a teacher and while there isn’t a memo in the lounge, there was assuredly an email sent to staff. You can feel comfortable setting your teachers straight. Just let them know you’re a regular kid, and you’d like to be treated like one. Most teachers will get it, and the teachers that don’t? Not your problem. Read what LeeG said a few comments up. thanks for joining in.

  26. Melissa says:

    Thank you for your well thought out article. I work in a cancer clinic. Additionally, my dad is in remission from prostate cancer, and my mom is currently fighting stage IV rectal cancer. I would like to post your article to Facebook, but my 74 year old parents recently decided to get Facebook, and do not like profanity. Do you have an F word free version of this article because I think you have some valuable information—but believe me, in watching so many battle this disease, I understand the need for “fuck.” I’m sorry for the loss of your brother and grateful your remission has helped you to reach out to others. Thank you for sharing something so personal.

    • Melissa- I get your issue with your parents and the language. Could you copy/paste the post into an email, delete the F-bombs, and then share it? If not, let me know, and I’ll see what I can do to help you out. thanks

  27. Alysoun says:

    Very good advice, the one thing I would add from my experiences of caring for both a family friend and for my partner is “Don’t take it personally if the patient would prefer not to have visitors or take calls”. Cancer is an ugly disease and both of those who i nursed only wanted their closest friends and family to see the ravages they had been subjected to, they preferred people to remember them as they were in healthy condition.

    • Alysoun – I think that “Don’t take it personally” should be added- maybe that’s #7b. That’s a great add. Thank-you.

  28. John Donaldson says:

    I lost my leg to cancer. Please don’t ask what it feels like not having a leg…especially during chemo. The chemo causes SEVERE phantom pain and it feels like I still have my leg but its just on fire and I can’t put it out. Two…don’t cry on my shoulder that you might lose you’re apartment, boyfriend or job. I have much bigger problems and compared to mine, they are mundane.

    • Truly, John. “You NEED a new iPhone? Well, I need a new leg. Go away. Now.” Thank-you for adding some serious perspective to the conversation.

  29. amy says:

    I had cancer in my jaw..festering for years, and I didn’t know it. all i knew was severe pain and exhaustion while my crazy controlling mother put me on all kinds of “healthful” supplements that were supposed to be so helpful “just TAKE them” she would scream.. two years of harrowing pain that made me unable to think clearly- then a tooth began to push its way out- I was going to kill myself over the pain- the dentist found the cancer and cut it out. a bone graft in my jaw/right side and more pain and a huge struggle with vicodin ..5 years later halelujah Marijuana to the rescue= dont tell me i have to take pharma drugs to be ok cuz that nasty stuff screws ppl up seriously/ screwed up my thinking and turned me into a monster and though from above I could see it I coundlt stop ME!, but with the good herb from God I can be me again and relax. it makes the pain tolerable i can even ignore it for about 20 minutes. i few moments of respite from God through his wonderous plants he gave us. I am greatful for the relief though it is short.

    • David Stanley says:

      Amy, thank-you for sharing your story. I am glad you are still here, and still fighting the good fight. Oral cancer is a tough one. So much of our self-image is in our face.

  30. Syndi says:

    I love this article. I was diagnosed with stage four ovarian cancer in October 2011. At the time, doctors didn’t think I would live to see Christmas. But, after ten months of chemo, I went into remission for a year and a half. I recently recurred and started another trip down chemo lane, so I shared this article with all my friends.

    Like others, I hate being admonished to stay positive, but I understand that people just don’t know what to say. Heck, I have cancer myself and am clueless as to what words someone else would find encouraging. I think it really helps when people are willing to just listen. You can’t fix my cancer or solve my problems. Let me vent, let me cry, let me laugh. Just be my friend,

    • David Stanley says:

      Perfectly said, Syndi. A friend of mine refers to that as “the companionable silence.”

  31. Richard Vaughn says:

    This list should be printed out in large font in a nicely colored brochure and made available through Hospice, cancer clinics, radiation therapy centers…everywhere. My father, mesothelioma. My brother, bone cancer. My niece, melanoma. My mother, breast cancer. All gone now, but with all of them I only knew that I must simply be there….and I was, day in, and day out. People have to realize that just being there sometimes means you’re the only one present, and you must be ready to help when asked, with toilet duties, catheter bags, and clean up. Sometimes there’s just no other option but to roll up your sleeves, slip some latex gloves on, and get to work. No better way to show how much you care.

    • David Stanley says:

      Richard, my sister in law (my late brother’s wife) has told me she never knew she had the strength to care for Michael the way she did. But she did, and plenty more. She’s not really an ‘in-law’ anymore. She’s another sister.

  32. Joshua says:

    David
    This is great. Here’s what I have to say on the topic:

    Our friends and family get sick. Sometimes it’s serious and we can’t control that. We can, however, control how we speak to the people we love. I’m 32 years old, have been battling acute lymphoblastic leukemia (ALL) since April of 2009 and have indeed heard it all.

    The cards, gifts, and visits I’ve received in the past five years have been at the level of generosity most people do not receive in a lifetime. I have found friends and family to have the best of intentions, but without knowing how to put together the right words, the wrong ones often come flying out.

    Try this thought experiment: Imagine laying in a hospital room decorated from the 1980s, surrounded by a couple of family members and friends, hooked up to an IV machine that’s about to infuse you with your family member’s stem cell donation. The pleasant conversation with your friends is routinely interrupted by four or five people in white lab coats asking you the same questions they did the day before as they stand around your bed at least an arm’s distance away. Never touching you. Ever. While this is happening, hundreds of people are praying for you, donating online, and organizing fundraisers on your behalf. Some of the most toxic chemicals humans have created are coursing through your veins. You haven’t had a normal poop in a month. Earlier in the day you filled out a worksheet called “Five Wishes” that tells family and friends where you want to be buried and whether you want warm lotion rubbed on you if you should end up in hospice. Now answer this question: How are you?

    This experiment is not meant to be sarcastic or ungrateful to the wonderful folks who’ve asked me this question. I only wish to offer some encouragement of other ways to interact with your loved ones while they’re sick. Friends and family should focus on purposeful questions and shy away from clichés from movies or pamphlets, like these repeat offenders:

    Seven Things Not To Say
    This too shall pass
    What doesn’t kill you will only make you stronger
    How are you?
    Are you ok?
    Have you tried XYZ?
    You don’t look sick
    Things happen for a reason
    In my experience, and from other folks I’ve met that deal with illnesses and hospital stays, life can be very regimented and centered around medical system routines, such as doctor’s appointments and IV infusions. Asking specific questions and offering your service to support this routine is most helpful. For example, “can I bring my hard drive full of movies over for you?” They will notice that you can empathize with their situation of being stuck sick in bed. Offering that specific idea for help might make it easier for them to tell you what they need or want, even if it isn’t movies.

    Seven Things to Say
    What movies and/or (audio) books are you in the mood for? When can I bring them?
    What needs to be done at your house?
    When is the next time you need a ride?
    Something funny about your day that has nothing to do with the illness – send a text, a picture or an email. And be ok with not getting a response.
    When are you up for a visit? And be ok with it being twenty minutes if that’s all your friend can handle at the time.
    Do your pets need any attention or care?
    Are there any errands that need to be run, prescriptions to be picked up, things put in the mail, groceries purchased, or bills paid?
    The people who have surrounded me while I’ve been sick have been the greatest blessing to me. Nurses who’ve provided incredible care along with a harmless crush. Oncologists that are fun to hang out with. Close friends who will do anything for me at a moment’s notice. Love and support from around the country in the form of tens of thousands of dollars raised on my fundraising site. And beautiful Jewish woman who wrote a song for me about this very topic. So how am I? Besides the cancer, I’m pretty damn good.

  33. Great piece with excellent advice.. Please don’t forget the kids and their families. 1 in 285 children will be diagnosed with cancer before the age of 20. Please don’t tell their parents how lucky they are that their child has the “good” cancer if the diagnosis is leukemia. There’s no such thing as a good cancer. The ‘cure’ rates are seriously skewed and ‘cure’ is a misnomer. Yes, we’re immensely grateful for any and all increase in survival, but that survival comes at a high cost.

    Know a family with cancer and don’t know how to help? Put a gift card to a grocery store or gas station in their mailbox, anonymously. Even with insurance, childhood cancer is a huge financial burden as often one parent, or both, if they’re both in the picture, have to either quit work or take a tremendous amount of leave to care for their child. Cancer siblings need support too. Offer to take them out for a day of fun while the parents and cancer child are in the hospital or on home isolation.

  34. Meg says:

    I have something to add. Sometimes the person who is ill feels the weight of obligation so heavily, and does not want to impose. When my best friend had breast cancer, I had to say to her, ‘please don’t worry about my comfort and convenience–just tell me if you’d like me to come with you/visit/be there/whatever’. ‘No’ was an acceptable answer, but often, after giving permission that way, the answer really was yes, please, I’d like that. Then, two years later, she was throwing those words right back at me, when I was doing the same thing, trying to be strong, not wanting to burden people.

    • David Stanley says:

      Meg, it’s a lesson learned, isn’t it, that there is strength, not weakness, in asking for help?

  35. Creed says:

    God bless you for this, David. My wife and I lost a friend, her best friend, to cancer 9 years ago. I remember not knowing what to do or say, and eventually the visit turned out well because we were able to just be there for her. We were able to chat, laugh, cry – whatever she felt up to. This post is spot on. Thank you for sharing.

  36. Ian Logan says:

    I’ve been looking for something to say to folk who keep asking how I am then making inane comments. Sometimes I feel like swearing at them. I have a cancer that is going to kill me sometime. In the meantime I deal with the consequences of surgery and chemo and worry about leaving my wife alone to bring up two kids that haven’t reached there teens yet; and one of them dealing with late effects of a brain tumour. But I just smile and say that I’m ticking over, and they look at me as if I’m being unfriendly and evasive. Shits me at times…

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