Good evening, and welcome to Monday Night Cancer Club. If you've been diagnosed with cancer, or have a friend or family member who's been diagnosed, are undergoing treatment, or have joined Club NED (no evidence of disease), welcome. If you're here for the community and kinship, (and with peregrine kate, a courageous, innovative activist, with a smile and kind word for all, and the seriously hilarious, smart and compassionate Zen Trainer), to name just two, this is the happenin' place to spend Monday evening) again, welcome, to one and all.
This evening, maybe I'm not the only one who needs to decompress after the long Thanksgiving weekend. Although chronic stress isn't exactly healthy, living with cancer, or watching someone you love struggle with cancer, or even making the decision to forgo treatment for cancer, it's inevitable. Stress and cancer are interrelated. Sometimes you don't realize the extent of how burned out and tore-up-from-the-floor-up you are until someone or something else draws your attention to it.
Stress and ways to deal with the often overwhelming emotions that seem to be inseparable from cancer, are different for everyone. Friends? Well, more on that subject in a bit. Here at MNCC, you are entirely free to be who you are, as you are, and speak your minds (within the auspices of the site rulez, of course). This is a safe haven, a place where you can relax and find how others have survived cancer-related stress, some suggestions, some humor, and most of all, a true reverence for each person's well-being. Please join me over the fleur-de-lis, for decompression and some suggestions on how to minimize holiday stress.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.Eternal Sunshine of the Spotless Minds
Can I just tell you I hate cancer? You, too? At 32, I've lost quite enough friends, and not all had cancer. A handful just couldn't cope with having a friend with cancer (that'd be me, seven years ago.) Others here have lost so-called friends when they really needed every bit of support they could get. No, I'm not kidding. One of my best girlfriends lost another "friend" for having the temerity to be diagnosed with cancer. As the saying goes, you find out who your friends are when you need 'em.
People who give you the silent treatment or the cold shoulder because you are ill? They aren't friends. Maybe you loved 'em, maybe you thought you were close, but people amaze me, every day. I'm not going to pretend to understand why a few individuals are shallow and even narcissistic, but karma, I have heard, can be a real bitch. I know it's hard. I know it hurts. Try not to take their bitchcraft to heart, chica or chico. Try to keep in mind that the nasty behavior of fair weather friends says everything about them, and nothing at all about you. You have more friends, real friends, than you may even imagine.
The same applies to family. I have two aunts, one on each end of the spectrum. My Aunt Liz, who actually wears a sleeping T-shirt emblazoned with Me, Myself and I and lives by this exact sentiment, has for seven years introduced me as "my niece, the one who has an incurable disease," followed by the gleeful announcement that she waits until the week before Christmas to buy me a gift because my "shelf life" is limited. My other aunt, Teresa (Tree) is more like the mother I lost at 14. If I feel overwhelmed, struggling not to cry, my auntie Tree is right there, with a cup of tea and a hug, telling me (and everyone else in earshot) that I'm living proof of a miracle. With my Aunt Tree, I feel entirely free to be myself, and that's a gift that can't be wrapped in festive paper, and isn't just for Christmas.
The best gifts are like that, in my opinion. They're given from the heart, and stay inside you, and warm you whenever you feel cold or lonely, or you think about giving up, feel instantly, reflexively guilty for it, and summon up the strength to fight another day.
In the seven years since my diagnosis with lymphoma, bone marrow transplant, remission, and now, post-transplant lymphoproliferative disorder (PTLD), I've learned a lot of lessons, most of 'em the hard way. It may sound selfish to you, but only recently, I've given myself permission to be with people I love, and do what I most enjoy, without apologies, without stressing about being less than productive or "not normal," (whatever that means). You can do this, too. In fact, I encourage you to consider the benefits to your overall health, physical and emotional, the many benefits of surrounding yourself with support, both human and logistics, and saying no to stress whenever possible.
Visits and Visitors
Most of us have been conditioned from childhood to be overachievers. Feeling guilty because you didn't cook a holiday dinner for twenty, and simultaneously clean and decorate your home? Of course, you had to look the part, too, like you just stepped out of a magazine ad. And you know the script: "I'm fine, just fine, but how are you?"
Please tell me you didn't actually torture yourself with any of the above. A healthy person would be exhausted after even a little bit of that list. Yes, I know about expectations, family and/or social, and even more demanding and exacting are our own expectations, and the guilt and disappointment we feel when we can't do everything we might like to do. It's taken me years to reject the guilt. Te lo juro, over seven years to stand up for myself and say: "No, thank you. I'm not up to this. I'm comfortable where I am. Oh, you think this pink zebra throw is tacky? Who asked you? Why don't you please, please go on and do whatever it is you want to do? Have a lovely day, watch football and parades, eat like no tomorrow, and don't worry about me. Yep. You have my permission. I'm doing exactly what I want to be doing."
Don't feel guilty. It accomplishes nothing. It just makes you feel badly, and in sickness or in health, beating yourself up never helps. Claro, you want your loved ones to enjoy holidays, and that Internal Timekeeper has reminded you more than once that their memories, and the way they'll remember you, or even a particular holiday in an Etch-A-Sketch future you can't see clearly, are nonetheless important. We live in the now, though. And now can be overwhelming and exhausting, even without holidays or guests.
Now, with Thanksgiving behind us, we have more holidays on the horizon, and this means more pressure. I know, believe me. I understand. You don't say the words but the thought has crossed your mind. Will I be here next year at this time? I hope so but the answer to this, nobody knows. Even the most healthy person cannot tell you with certainty he or she will be here, on the earth, a year from now.
This doesn't mean you have to wear yourself out with visits and visitors, or traveling when you really need to be at home. Skype is an easy way to see your loved ones miles away. You can also call, email, text, IM, whatever works best for you. It's fine -- no, it's better than fine, it's perfect -- to visualize yourself as both the caretaker and the patient sometimes.
Be Specific, Please
When someone says "let me know if I can help you," it's nice. But when someone says "Hey, Alexa, I'll be over to pick up your girls in an hour, for dinner and an early movie," that's even better. Or: "Do you want to just stay home and rest today? Jason, bring the kids over early, and stay for dinner." Better still. The neighbor who brings your mail and packages to the door. The coworker who drives you home, because he knows you don't feel 100%, even though you said nada.
Caretakers, there is an art to this, and you know it better than I. There are ways to help someone immensely, mindful to do so with respect and dignity, never treading on feelings or implying anyone isn't capable, the barriers we all consider before we offer. The person who needs help won't be offended by your kind, sincere offer, especially when it involves children, and an opportunity the child would miss otherwise. I'm not up to the noise and crowds of the roller-skating rink, but my kids love to skate. If someone we know and trust offered to take them skating, or even for a walk? If you call and say you ordered too much pizza, and you'd be grateful if my family hasn't eaten yet? Random acts of kindness like these are truly, genuinely appreciated.
There are operators standing by, people who want to do something to help you but may just send a card, because they have no idea what might be helpful. One might be happy to walk your dog. Another is going shopping, and would be happy to pick up some milk and bread for you. Little things, I know, but they make an incredible difference when you need help . . . and you'd certainly do the same for them, wouldn't you? Chances are, you have.
Gifts, Food and Tradition
Keeping it simple is usually best. A life-changing illness means new demands on you, and your family. Even if you're a lifelong hyperactive busy-bee Type A, like I was, with so many lists you need a master list to keep up with your own self-imposed deadlines, do you really need the pressure? I know . . . conditioning. Expectations. Truly, we're our own worst critics, and our own most severe taskmasters.
If you didn't happen to have red and green pens for writing out holiday cards, and they weren't stamped and in the mail by December 1, what's the worst case scenario? The world will continue to spin, I promise. And we're not beating ourselves up, remember? People who are used to receiving cards from you understand you may not be up to it, or may not be as punctual as you were before, and they'll understand. (Unless my Tia Liz is on your list? Cross her off, if so. You can even tell her I said so.)
New traditions (yes, I know . . . . the very thought makes me nervous) may be something to consider. You don't have to plan, or make a table centerpiece with pine cones, glitter, cranberries and a glue gun. You don't even need to move from the sofa, if you're comfortable there. All you have to do is be open and receptive to something new, and not guilt-ridden about old traditions you're not up to just now.
My children, like everyone else's, want the new toys they see on television, but even the youngest, mi Madalena, understands our family's policies on toys and gifts. Each child receives one gift, and donates one item that he or she has, in very good condition, to the local children's hospital. The real gifts aren't wrapped in shiny paper. They're our traditions, and our love for each other every day of the year, and the memories, unlike those blasted toy commercials, last always.
When Maddy is a "grown-up lady," chances are she won't remember a doll she wanted at 5 or 6. She'll remember the times we spent together, baking cookies, making decorative greeting cards, crafts and soaps for gifts, and going to the hospital with her Daddy on Christmas Eve to sing carols and visit children who were too ill to go home.
She'll remember that starting on the day after Thanksgiving of every year, she, with her sisters and brother, were appointed Holiday Royalty in a very silly ceremony by her parents and grandparents. As the Princess of Holiday Kindness, an honorific Maddy takes seriously, she reports at least one act of kindness per family member every day at dinner. (Kind of difficult to sulk, whine, or be a tattle-tale when one is La Princesa.) It wouldn't surprise me if she knits hats with her own children, wears her fuzzy animal slippers, and makes the coconut rice pudding her mami could eat, even when nothing else was remotely appealing.
It's Okay If You Don't Feel Cheery
It's okay if you don't want to cook, or entertain, or dress up. We love you, anyway -- shame on us if we don't show it enough.
My girlfriend hepshiba has a very wise and true gem in her signature line.
"If you fake the funk, your nose will grow."I don't think Bootsy meant this with a holiday exception, do you? You don't have to fake the funk, or pretend to be merry. I know, you don't want to be a burden, ever, on anyone. Put that shoe on the other foot for a second.
-- Bootsy Collins
Would the kind and loving people closest to you ever seem like a burden? I didn't think so. You'd move heaven and earth to make them feel comfortable. And it's okay, I promise, to allow them to love you back, any and every day of the year.