reblogged from Katherine O’Brien’s Ihatebreastcancer blog:
The holidays are here. While some songs claim this is the most wonderful and most happiest time of year, for many people it is also the most stressful time of year. Last year, we asked people with MBC to share their thoughts on the holidays. We asked them, among other things, how to deal with the feeling that that this holiday had to be most perfect and most memorable gathering. Their comments were so insightful:
“I think that my offer to make six dishes for Thanksgiving was really my attempt to show myself that I was still capable of doing “more” than my able bodied relatives…I am gradually learning that I don’t have to place so much pressure on myself”
“I was upset the first holiday after my diagnosis when our big family gathering had its usual portion of mini-dramas, arguments and misunderstandings. I thought this holiday should be like a Hallmark card or that Norman Rockwell painting, but then I realized we were never that way, so why should I have these unrealistic expectations?”
“For me the biggest stress is trying to please everyone. While I have always struggled with this, the intensity with which I feel this is much stronger now that I am living with mbc. It is an effort to remember that it is truly impossible to please all, all the time. I am trying to remember what it is that I like – this often gets muddled for me. I am still a work in progress.”
“I am bothered and saddened by the thought that this might be my last Christmas. It makes everything so much more emotional and stressful–like your gifts to people have to be more meaningful and your interactions with relatives you barely see more intense.”
Some commented that thinking about meaningful, more personalized gifts was comforting. One woman started a tradition of giving everyone very personalized ornaments. “I’ll be part of their Christmases in the future,” she said.
You can read more thoughts on MBC and holiday coping strategies here. And here are some additional thoughts on enjoying the holidays:
Ask for help. If the task of cooking a large family meal seems daunting, then ask for help with set up and clean up, have each person bring a dish to share, or order food to go from a store or restaurant. You may consider making restaurant reservations. Remember, getting together with the people you care about is more important than the food. Family and friends will gladly play a role in your celebration and may feel flattered that you asked for their input and contribution. Source: Cancer.net’s Cancer and the Holidays
Create a New Holiday Season Tradition That Makes the Most of Your Energy. Change your usual holiday activities so you relieve yourself of some of the pressures of entertaining. Have a “pot luck,” with family members each bringing a dish for the meal, have someone else host the meal, or suggest eating out at a favorite restaurant. Source: CancerCare.org’s Coping with Cancer During the Holidays
Put Yourself First: It’s so easy to feel obligated to accept every invitation, or fulfill every expectation: DON’T! Limit your involvement to what you truly can handle and will enjoy. Source: Mass General’s Coping With Cancer at the Holidays
It’s OK Not to Feel Cheery. If there’s one thing to be mindful of as the holiday season is upon us, remember that it’s OK to not feel as cheery and joyful as all the songs tell us to. It’s normal to experience conflicting emotions at the same time.
Source: MD Anderson’s Tis the Season for Coping With Cancer
If Possible, Keep Your Sense of Humor. When was the last time you had a good laugh? Has it been awhile since you watched your favorite funny movie such as Christmas Vacation? How about an real golden oldie like Duck Soup? And finally, if all else fails, ELF YOURSELF! All the best from MBCN!
October 13th was National Metastatic Breast Cancer Awareness Day. It is a day that has been organized to educate others beyond the powers of Pinktober. Currently 155,000 people live with metastatic breast cancer. Of that number, 40,000 die each year from the wrath of this disease; a statistic that has not changed significantly in the past twenty years. Did you know that only 2-5% of research money is used towards funding metastatic breast cancer research, yet 95% of deaths occur among those who have advanced or metastatic disease? (www.mbcn.org)
The facts are startling, but I want to share a story that is equally as startling; one that will warm your heart and make you a believer of the new generation set to take over our world.
Allow me to introduce you to four children, Parker and Reese Fetherston and Sophie and Ethan Tubbin. These children are examples of how every parent hopes their child will turn out: kind, caring, athletic, generous, and leaders. They approached me a couple months ago, wanting to have a fundraiser for breast cancer. Excitedly they described the carnival, food, and silent auction that would be in store for the entire neighborhood. I thought to myself, “Wow, that is quite an undertaking,” but quickly found a date for this event to occur. Unbeknownst to me, it happened to be Metastatic Breast Cancer AwarenessDay.
It was a picture-perfect day. The kind you imagine in your wildest dreams: sun, a slight breeze, and temperatures in the 60’s. The Fetherston and Tubbin’s back yards conveniently butt up to each other and were decorated with balloons, posters that read: “Molly’s Army: we got your back,” a table of silent auction items, seating areas for adults and children and numerous carnival activities for the kids.
Tickets cost 25 cents and each activity required one to two tickets. Make-n-take frame decorating, basketball toss, cookie decorating, ball toss, bean bag toss, trampoline jumping were just some of the games. Dinner, home-grown vegetables, and pink candles could additionally be purchased. My kids and niece were thrilled with their bags of prizes won from various carnival activities.
To look around and see over sixty neighborhood friends coming together for one cause was overwhelming, but to think two elementary and two middle school kids organized this event with significant thought and attention to detail is to be commended. The four worked together tediously creating and re-creating list after list of elements to make this neighborhood event a success. I could not be more proud of four children than I am now. Let’s not forget about the examples of generosity that have been led and reinforced by their parents, Greg and Heather and Matt and Maria for supporting their children’s ideas and then assisting them into reality. My Army is an example of four children that are going to make things happen in their life and others. They exemplified leadership at its finest by helping to support a common cause with creativity and remarkable dedication.
I am delighted to write that their event raised over $400 thanks to some extraordinary children and a neighborhood of support. The Metastatic Breast Cancer Network will be receiving this money. This organization provides education for metastatic breast cancer to patients and loved ones and advocates for improved outcomes in the clinical setting. I can’t think of a more deserving organization that is focused on finding treatments to extend lives until a cure is found.
It takes leaders and voices to be heard for change to occur. March forward, Army, with your influence and loud voice. Left, left, left right left….
Thanks, MBCN for educating me so I could educate others with my voice and actions.
By David Imondi
I dread October. I change the TV channel when all the pink ribbon commercials come on. I understand why my wife hated pink ribbons. There was nothing pretty or delicate about the disease that ravaged and killed her at age 47. My wife was Dr. Suzanne Hebert Imondi. She was your vice president. She was my true love.
Years ago, Suzanne asked me to share my experience as a “cancer husband” to help MBCN members. I never did. Now, I write this as a heartbroken widower who is trying to raise two young kids without their beloved mom.
I thought I was a good Cancer Husband. I spent countless hours in waiting rooms in cancer centers from Boston to Houston. I slept sitting up for weeks in uncomfortable hospital visitor chairs by Suzanne’s bedside. I kept a large binder with me with copies of PET scans, path reports and lab values. I used a label maker to make sub-divisions and taped physicians cards to the inside cover. In retrospect, I think I was trying to control a disease that could not be controlled.
If I could offer some meager advice to all of those battling metastatic breast cancer and their loved ones, it would be to try to hold on to those moments of happiness when they come. Suzanne and I lived from scan to scan. We would go over the PET scan results and anxiously highlight the areas that were too many times described as “lesions that could represent further metastasis.” Don’t wait for “clean scans.” They may never come. Go to Disney or rent a villa in Italy before the next scan. Lean hard into joy. Sometimes we forget to live while we’re trying not to die.
Please write lots of notes and record videos for your loved ones. Suzanne did not like the finality that those things implied. But now I see how our brave, beautiful kids cherish every note she ever wrote to them. It helps keep them constantly connected to her.
Lastly (and most difficult for me to discuss) remember to say everything you need to say to the people you love. Even though Suzanne lived over 7 years from her initial metastatic breast cancer diagnosis, I thought we had more time. The end happened more quickly than I expected. I thought I had had more time to remind her that even with no hair and draped in hospital green, she was the most beautiful girl I had ever seen. I thought I had more time to tell her how she was the best thing to ever happen to me. I thought I had more time to just hold her and tell her how much I loved her.
I am sorry I don’t have more to offer all of you brave women fighting this disease. Please do know that your courage inspires many. Know that your Cancer Husbands, like me, would give their lives to lift your pain even for a minute. Most of all, know that you will never, ever be forgotten…..
Editor’s note: Thank you, David for this beautiful and heartfelt letter. If you are reading this and are also a single father due to cancer, you may be interested in this website: http://singlefathersduetocancer.org/home.do
24 Comments | caregivers | Tagged: advanced breast cancer, caregivers, MBCN, metastatic breast cancer, singlefathersduetocancer, stage IV breast cancer, young women with breast cancer | Permalink
Posted by MBCNbuzz
MBCN urges you to participate in this important survey—the MBC Symptom Control Survey, designed by respected, long-time metastatic breast cancer advocate Musa Mayer.
If you are living with metastatic breast cancer, please take part in this brief survey about how you and your treatment team are dealing with the symptoms and side effects you have from your metastatic breast cancer and its treatments.
The Survey results will be featured in a presentation at ABC2, the Advanced Breast Cancer Second International Consensus Conference, to be held in Lisbon, Portugal, November 7-9, 2013, and shared on the AdvancedBC.org website immediately after the conference.
The survey should take about 10-15 minutes. Your answers will be anonymous, and no information will be collected that could identify you. Please forward this invitation to anyone you know who is living with MBC.
Complete this survey and let your voice be heard!
Survey link: https://surveymonkey.com/s/MBCSymptomSurvey
We at MBCN urge you to participate!
1 Comment | side effects | Tagged: ABC2, advanced breast cancer, http://mbcnbuzz.files.wordpress.com/2013/09/eso-abc2-logo.jpg?w=650, metastatic breast cancer, Musa Mayer, side effects, stage IV breast cancer, symptoms | Permalink
Posted by MBCNbuzz
Hopefully you've registered already for the conference! There's still time to sign up but we are really coming down to the wire for scholarship applications and our hotel block. SIGN UP TODAY!!!
We are working very hard to bring you an excellent conference! So much to do, so little time! But it will totally be worth it to see all of you.
MBCN worked with Health Monitor Network, a publisher patient education magazines, on a brief survey. Among the questions–What’s the ONE thing you would tell people about metastatic breast cancer? A selection of responses can be found here.
How about you? What would you tell people?