Don't Say This to a Cancer Patient

 This post was originally posted in the July 17, 2013 of the The Huffington Post.  By Dan Duffy who is a Filmmaker & Co-founder, The Half Fund.


Eight years ago, I was working for a local video production company assigned with the task of telling the stories of parents who lived through the unimaginable pain of having a baby die in the Neonatal Intensive Care Unit, or NICU, at St. Louis Children's Hospital. What made this such an arduous feat was the fact that both my wife, Stephanie, and my editor, Megan, were pregnant at the time. It was a surreal experience in the editing room every day. Meghan and I would put together a series of shots, and then have to excuse ourselves at various times to cry.

And I have to tell you, it turned me into a raving lunatic at home with my poor wife. "Can I do this? Let me do this! Don't worry about lifting that, I'll get it! Can I get you anything? Do you have any cravings? Would you like a brownie? How's everything feeling down there? Do you need a blanket? Would you like to watch a movie? Would you like me to make a movie for you to watch? Are you out of prenatal vitamins? Do you want me to..."

SLAP

"Okay, never mind then."

I was saying all of the wrong things, and I didn't even realize it. In fact, it took me re-watching an interview we did for the project to finally see the light. We had interviewed this couple who told the harrowing story of how their baby died, and how the only time they were able to hold him without tubes and wires was in the few minutes after he had actually passed. They washed his hair and dressed him for the last time.

I still think of that moment literally every single time I wash either of our boys hair while taking a bath or shower. A few times I've even had to excuse myself right in the middle of lathering them up.
But the next thing that this lady said really shook me to my core: "And then people would say to me 'At least he's not in pain,' or 'At least he's in a better place.' No...a better place is in my arms. There is no 'at least.'"

The last blog I wrote dealt with people who get mad at God during cancer. Well I didn't quite realize the crap-storm that would follow from a fair amount of people. One that really struck me came from a woman who read our blog through the Stupid Cancer Facebook page. In a nutshell, it read something like, "I hate it when people say stuff like 'God doesn't give you a cross more than you can bear.'"
And all of a sudden, "There is no 'at least'" came flooding back. With that in mind, I want to share a few thoughts with those of us who are either friends or loved ones of cancer patients or caregivers.
For starters, we know that you love us, care for us, and want to comfort us, and we love and adore you for it, and are extremely grateful for your compassion and kindness. With that said, we will internally, and sometimes externally, tear you a new anus for saying any of the following platitudes.

1. "This may be hard to hear, but..." Going through cancer, life is beyond hard enough. Unless you've gone through it, it's incredibly hard to empathize with its level of "suck." Don't make it any harder. Which leads directly into...

2. "I can relate." Unless you have gone through chemo, radiation, and a ball (or other part) removal, it is almost impossible to be able to physically relate. Emotionally, maybe. Physically, meh. The odd thing is that people that have gone through this never, ever say "I can relate," or "I know what you're going through," and the reason is simple: if they do relate, story swapping starts. "You lost a breast and part of your jaw? That is awful. I lost my lower leg and now my heel is my knee. And don't get me started on those damn Pet Scans. Catheter, my ass!"

3. "This is part of God's bigger plan." If you want a cancer patient who loves God to start hating God, say this to said cancer patient. If he or she is not mad at God before this sentence is uttered, he or she is pretty pissed off now. "Wait, you think God did this? What a jacksauce!" Oh, and for an ever higher state of anger, as I said earlier:

4. "God doesn't give you a cross you can't bear." It takes hindsight to understand the higher purpose if that is what you are looking for. You don't stand in a burning building or fend off sharks while stranded in the ocean and think, "Well, this is all happening for a reason." You extricate yourself from the situation, and then you reflect...if you're still alive, that is.

And I will say this: at some point during the battle, God-fearing or not, we all have a cross more than we can bear. It's only when we have it that our limits are tested, broken, redefined and rebuilt. Every single one of us have, at some point, given in. I recently talked with an absolute powerhouse named Dr. Sheri Phillips, who is the national spokesperson for the Komen "3 Day Walk for the Cure." She told me about one night while battling breast cancer, she started feeling massive tightness in her chest. Instead of calling an ambulance thinking she was having a heart attack, she went to sleep, thinking "If this is how I'm going out, so be it, because God, I'm just so tired of fighting." And when she woke up, her limits were tested... broken... redefined... and would eventually be rebuilt.

HOWEVER...

To cancer patients and caregivers, you should not get mad when you hear these words coming from anyone: "I'm sorry you're going through this."

Lots of us try to throw those words back at the folks who say it. "Why are you sorry?" The reason people say it is simple: it's the right thing to say. It doesn't matter if it is reactionary. It's what should be said. It's not pity; it's love, affection, concern, or at a minimum...being polite.
 
The argument is "I'm sorry" is used as often as "Please" and "Thank you," and people have said, "They're just throw-away words." Well the next time you find them as "throw-away," have someone refuse to keep a door open for you at the mall, or hand someone a salt-shaker at the table and not receive a "thank you." Or my personal vexation...let someone into your lane, and then have them not wave.

"I'm sorry" is a polite way of saying "I don't know what you're going through because I can't quite relate, but it hurts my heart to know that you're suffering."

"I'm sorry" is good for casual friends, acquaintances, and even strangers. But if you are utterly close to someone battling, there is one sure thing you can say to make them feel even a shred of a whiff of a modicum of better:

"I will be here for you in any way you need, in any way I can."

And that's it. Period. Finito Mussolini.

So now that you know this, it's important for patients and caregivers to not be afraid to gently tell your loved ones where they can stick their platitudes, while also expressing gratitude for the fact that they want to make you feel better, even if for only a second or two. It is up to us to teach them, no matter how hard it might be to say.

Because in the end, by you being the a-hole, you're helping them to not come off like an a-hole. And no one likes being the a-hole...not even the a-hole.

Discover more at www.thehalffund.org


To view original document go to: http://www.huffingtonpost.com/dan-duffy/what-not-to-say-to-a-canc_b_3578732.html

When Your Husband Has Cancer You May Have to Lie

This post was originally posted in the July 22, 2013 of the The Huffington Post.  By Judy Silk.  Judy Silk is a stand up comic, freelance writer and blogger at judemablogma.blogspot.com. A California native, she requires little water.

Cancer is everywhere. It's probably just a function of my age (56), but I seem to know way too many people, close ones, who are affected.

My husband for one. He is my second husband, and the love of my life. We both needed to be divorced to find our way to each other, and consider it to have been beshert (the Yiddish word for "meant to be"). We got married with our children on a family cruise to Alaska. One year later, he was diagnosed with colon cancer. I've had to deal with that. I've had to be devastated, crushed, strong, hopeful and cheerful. My rabbi said to me early on, "Don't go to the funeral today," and I've taken that to heart. We live each day fully, lovingly and gratefully. But his diagnosis is terminal. Short of a miracle, that is our plight.

I was motivated to write this because I have known an overwhelming outpouring of support, concern and offers of help and love. I feel like I want to put a precision to these offers, and to the reality of what living with a terminal loved one entails. We sometimes want to dance around the fine points, but I'm hoping it would serve everyone well if I could articulate some details. After all, I want help and I know you want to give it. Here are some things you might want to consider if you know someone with cancer.

1. Accept that I am going to have to lie to you. When you ask, "How's he doing?" accept that it's in your and my best interest for me to be non-specific. So I have to say, "He's doing okay," and leave it at that. We can then be appreciative that you asked, and you can be thankful to not know more. They say the devil is in the details.

2. Don't tell us to give up sugar. I know you mean well with your solutions and alternative treatments. You want to share and provide an opportunity to do what no medical science can do, but you're also telling a dying man that he should spend his last remaining days, months or years torturing himself for NO REASON. At this point, we look at every day like a Last Supper. And I encourage him to do ANYTHING HE WANTS. We don't give up hope. Never. But I want him to have all pleasure, all indulgence. I want him to have the greatest joy he's ever had. Can you see why when you say, "Give up sugar and dairy and you'll be cured," it comes across like "If you don't deprive yourself, you are therefore responsible for killing yourself?" It's a really ugly notion and not valid in his case. His cancer is wide-spread. I shouldn't have to explain this to you.

3. When you ask what you can do for us, be ready for it to be something other than a casserole. Because what really helps are small things. Going to Trader Joe's? Give me a call. Nine times out of 10, I won't need it, but this might be the 10th time that I do. If you have kids my daughter's age, and you're going to a movie, maybe you could invite her? I don't mean for you to invent activities, and certainly not every week. I wouldn't want my daughter to think I'm getting rid of her, but it makes me feel less like I'm imposing if the invitation comes from you rather than me asking.

4. Call and invite me to kvetch. I may not, but I need some irrational venting. For me to complain about the cancer is futile. But that doesn't mean that I don't harbor anger and frustration in my bloodstream. So maybe help me by allowing me to unload it on some unsuspecting target, like say, a neighbor who has perpetrated a slight insult upon me. If I can heap my scorn on that deflective victim, it helps unravel the hurt.

5. At a certain point, families like ours do need a little extra cooking help. Not an onslaught (we don't have a big enough freezer), and not a schedule -- we're not to that point -- but occasionally. So you might ask if I have a recipe you could make, or if you're making some killer wild-rice salad, offer to bring us a quart? That kind of thing. But ask first. When I just get random quarts of foods, it eerily reminds me of being at the end point, and I don't want that.

6. Give me a coupon for a favor. Since I'm working, raising a teenager, still parenting a college kid and caring for an elderly widowed Mom who lives an hour away, I miss a lot. Things that occur to me that are helpful would be: offering to drive down to a pharmacy across town to pick up our increasing cornucopia of meds; offering to drive my teenager to an appointment or activity; having your kid offer to walk the dogs for us. Maybe if you're going out to dinner, see if you can pick something up for us. Even if we get it after we've had dinner, we may like to have it the next day. That kind of thing.

The amazing thing about this whole cancer experience has been the extreme outpouring of support from our friends and relatives. Everyone says, "If there's anything I can do, please let me know." But it's hard to be in the position of repeatedly asking for help. As primary caretaker, I don't want to look or be pathetically needy. I know that in my heart it makes people feel good to help out. It would for me. This list is just a guideline that might make it easier for us both to band together to support the one who ultimately needs it, the one who is no longer in the position to be too proud to ask for help. It allows me to acknowledge that I have more on my plate than I can handle sometimes, and I hope it's a good road map for us to work together to support the whole.

Thanks mostly for listening. Oh, and I have a really good recipe for paella. (Too much?)


To view original document go to: http://www.huffingtonpost.com/judy-silk/tips-for-helping-families-affected-by-cancer_b_3629082.html?utm_hp_ref=email_share

Into the Wilderness; A Lesson in Grace

Sara Zuboff is a certified Yoga instructor, massage therapist and thyroid cancer survivor. Along with Sharon Holly, she teaches a monthly, 2-hour, yoga-based workshop at the Cancer Support Community-Benjamin Center entitled 'Revive & Thrive' in which cancer survivors create mind/body shifts to overcome overwhelm, stress and struggle. For information on this and other free-of-charge CSC programs, please call 310-314-2555 or visit CSC's website at www.cancersupportcommunitybenjamincenter.org

I sometimes think back about my cancer journey like it was a movie. Rather than a plucky rom-com like The Proposal, it’s tougher and grittier like The Good, The Bad and The Ugly.

The Good: I am a cancer survivor. I had a treatable cancer with a relatively easy surgery and short treatment plan. That I was diagnosed was a miracle born of coincidences for which I am eternally grateful and humbled by.

The Bad: I had to have surgery and treatment where I had allergic reactions, side effects and irreparable damage to my salivary glands. I also must be on medication and follow-up for the rest of my life.

The Ugly: I have a scar on my neck; though small and well-done still noticeable enough that people ask me about it.

In the context of my movie metaphor, I am tough and gritty Clint Eastwood kicking cancer’s butt and taking names. This vision makes me happy and lights me up when I think back to that dark time of diagnosis and treatment. Because the truth is the experience was terrifying and I wasn’t some courageous, tough-as-nails, cowboy-warrior. I was a young, new mom vulnerable and frightened beyond belief. In the midst of it, I felt like I was stuck in the wilderness at night, without a map, supplies or a flashlight. And while I was surrounded by friends and family who loved me, had access to excellent medical care, the psychological terror that comes with a cancer diagnosis was at times suffocating and each night while I waited for that first body scan that would tell me my cancer was gone, the wilderness would come.

And out of necessity, I began to get to know my own terror. I found comfort in a poem by Rumi:

     The Guest House

     This being human is a guest house.
     Every morning a new arrival.

     A joy, a depression, a meanness,
     some momentary awareness comes
     As an unexpected visitor.

     Welcome and entertain them all!
     Even if they're a crowd of sorrows,
     who violently sweep your house
     empty of its furniture,
     still, treat each guest honorably.
     He may be clearing you out for some new delight.

     The dark thought, the shame, the malice,
     meet them at the door laughing, and invite them in.

     Be grateful for whoever comes,
     because each has been sent
     as a guide from beyond.
   
     -- Jelaluddin Rumi,
      translation by Coleman Barks

I invited that panic in and asked it to dinner. I would feel the terror and I would practice an exercise I learned from Shinzen Young where I began labeling the feelings as they arose, learning to notice them without reacting to them. Until I began to notice the darkness receding. Until I noticed my fear of impending nightfall and the wilderness it would bring lessening. Until I noticed a small voice in the back of my heart murmuring, “You’ve got this”.

We all know it is darkest before the dawn. And if you are in the midst of your own wilderness, please hear me now, “you’ve got this”. Even if it is dark, you can’t see and you’re scared: get quiet and listen, “you've got this". This part of the journey is so hard. You are fighting for your life and facing an uncertain future. And sometimes the most you can hope for is a little grace to find you in the dark.

There are moments of transcendence in this journey and you may not find them in the good, but rather in the bad or the ugly. I was reminded of this just today when my son was lying in my lap. He pointed to my neck and said, “Mommy’s neck boo-boo”. I replied and said, “Yes, that’s mommy’s boo-boo.” And he said, “I’ll kiss it and make it better”. And you know what? He totally did.