The Holidays – How to Cope

November 21, 2012

The holidays can be fun, family-filled times of good cheer and happiness, but they can also be very stressful, especially for those of us with metastatic breast cancer. MBCN posed the question on Facebook and also had a discussion group explore the topic.

The first issue is how you want to be treated during the holidays.

Do you want people to acknowledge your cancer and your day to day struggle or do you prefer to blend into the background and just be one of the crowd? One of our members put it this way:

“The first year with mets I kept thinking –What if this is my last Christmas? Why aren’t people realizing that? I kind of wished the holidays away. People you see once a year and telling your story over and over, feeling like everything has to be perfect and normal just like it always was. Well, this year I have done a total turn around. Why in the world would I want people to think that? Why would I want doom and gloom? It’s a good thing that everyone celebrates and does NOT have that on their mind. It’s still on my mind-but I don’t want to be treated differently.”

Another noted the “elephant in the room” question among some of her “less than loving” relatives. “Why is Mary still here? I thought she had an incurable disease.” Do you try to enlighten them about metastatic disease or just ignore it?

How many times have friends or relatives greeted you with:
“So, you’re feeling good?”
 And you would love to reply:
“Um, not really, but I’ll play that game if that’s what you want to believe today.
I’m tired just thinking about it.”

“I try to just accept people on the terms they set and follow their lead,” said one participant. “At Thanksgiving, only one of my relatives, my sister-in-law’s mother, hugged me and said she kept me in her prayers and she was so inspired how I’m living so well every day, just moving forward, despite the diagnosis and the day to day coping. This made me so happy, but I also realized the rest felt the same thing, but just didn’t want to articulate it. At least that’s what I prefer to think!”

“I try to keep my mind off of me,” stated one woman. “I watch my grandson really enjoy; I watch my newly married daughter and son-in-law and think thoughts about how perfect they are together. I even try to find the better qualities in my mother-in-law. I listen more intently to conversations and really try to be present and it keeps me out of my head. But I do tell myself over and over–how lucky I am to feel good this year.”

But what about the feeling that everything has to be perfect, that this has to be the most memorable Thanksgiving or Christmas or Hanukkah ever?

“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.

One thing all participants agreed on was the need to simplify that to-do list of activities for the “perfect” holiday.

“I had a scare the other day because I could not get out of bed because of severe pain in my knee-mets related? I don’t know, but it was only 4 days until Thanksgiving. It was a good wake-up call. I said to myself–What if I can’t get out of bed for the next 4 days? I realized I am trying to please everyone and have a million things on the list to make Thanksgiving just like it always was in my mom’s and grandma’s day. But, if you really couldn’t do the list, what would happen? How important really is every item on that list? Someone else could make the potatoes or my husband could run out to a caterer and order in missing items. The tablecloth might be wrinkled, the silver unpolished, store bought pies instead of homemade. Someone else could buy flowers or candles or turkey cookies for the kids. Hey, you could always eat out or even have pizza! But people pitch in and want to help and you don’t need to take on as much as you do. You just need to ask for help.”

One woman on Facebook suggested: “For me, it was time to move to another family member’s house for Thanksgiving so when the time comes it will be one less thing to get emotional about.”

“I know personally, I have to prioritize and realize that I can’t do everything I want. So I have to buy cookies instead of make them and use gift bags instead of wrap. I do try as hard as I can to keep family traditions going and I am not above asking for help. It was tough the first few years giving up that idea of the perfect Holiday, but honestly everyone seemed fine with it.”

“I do almost all my shopping online–much easier and I don’t get worn out.”

Many of us agreed that limiting contacts to close family and supportive friends was critical.

You don’t need to waste time and energy on unhelpful, unthoughtful relatives or friends who bring you down. One woman noted: “I went to our annual holiday lunch with a friend and felt worse after it, so I said to myself. That’s the last time. I don’t need this.”

Another Facebook poster noted: “I find that being around my family helps me to be more thankful for having made it through yet another year. To see how the little ones are growing up and that there is hope for a bright future…within those little arms that hold me tight.”

Another woman agreed: “Holding an infant reminds me to celebrate life around us instead of being so aware of death in our lives.”

Simplify, Focus on What’s Important to You, and Ask for Help!

This holiday season seek out those who truly support you and drop the rest. Simplify and focus on what really matters to you. And know that there are 155,000 people in the US alone in your shoes facing this same challenge and working out the solution that works for them. Also, you may find it helpful to read through our website Support section  for suggestions on ways you can connect with others who have metastatic breast cancer.

Happy Holidays from all of us at MBCN!

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Breathe in that sweet, cool November air!

November 14, 2012

I live in New Jersey and I’ve been feeling a bit weary but triumphant this November, having survived a triple threat: Hurricane Sandy which knocked out power to my town for a week, a November 7 Nor’easter which dropped three inches of snow on us and… Pinktober.

We all survived another onslaught of Pinktober and I’m happy to say that more and more of you participated in raising your metastatic voice above the cheerleading din of the ‘happiest cancer on earth’ to set the record straight and make some inroads into the misinformation that reigns.

MBCA Day October 13 2012 at the MBCN conference in Chicago

On October 13 I was at the MBCN conference (which was fabulous) and I was interviewed for some articles and media stories later in the month.

But, when I think of spreading awareness of mbc, my thoughts keep returning to a simple encounter I had with a woman with early stage cancer who was on a panel with me, Breast Cancer Perspectives, held at our local YMCA. The program was poorly attended because of the weather and lack of publicity, but it was a meaningful experience for all who attended and people lingered afterwards. My fellow presenter came up to me and said, “I never thought about breast cancer from your point of view and, as I was speaking after hearing your story, I thought for the first time that what I was saying might be painful or hard for you to have to hear all the time.”  One encounter, one person whose perspective was changed.

Did anyone have a similar experience? Or maybe you wrote a letter, told your story, donated money, attended a program or conference or posted a comment online.

I’d love to hear about it.  In the Comments Section below, please let me know by completing this statement: Here’s what I did for Metastatic Breast Cancer Awareness this year:  ________________

I will be creating a page on our website for 2012 MBCAwareness activities to show that one person can make a difference.

Here’s a start to the page: a  very brief sampling of interviews, articles and letters to the editor, proclaiming the complete picture of breast cancer, including those of us living on the darker side of pink. Please feel free to send me any additional links.

Articles:

 

Carol and her husband at the Greater Nashville Komen Walk, raising awareness of mbc

Letters to the Editor:

Metastatic Breast Cancer Knows No Month – 11/1/12 The Tennessean

Fight Metastatic Breast Cancer with Education – 10/29/12 The News Herald Northern Ohio

For some every month is breast cancer awareness month 10/4/2012 Examiner.com

Blogs:

During Breast Cancer Awareness Month, We Must Not Only Celebrate Success, but Reflect on Our Limitations As Well  -American Cancer Society Dr. Len’s Blog

Where is our Metastatic Breast Cancer Celebrity Spokesperson? –  ihatebreastcancer blog

Send me the links I’ve missed by commenting below!

THANK YOU!

Ginny Knackmuhs
MBCN Board

Speaker Videos Available from the 2012 MBCN Conference

November 8, 2012

Dr. Pat Steeg – A Common Sense Approach to Metastasis Research to Achieve Results

We are happy to announce that ALL of  the SPEAKER PRESENTATION VIDEOS  from the 2012 Metastatic Breast Cancer Network’s Conference in Chicago are now on our website and available for viewing.

Review the sessions you attended or watch any of those that you were not able to see. If you were not able to attend the conference, enjoy this virtual presentation. Each talk can be viewed as full screen, so that you can read the slides more easily.

As a bonus, please note that all of our past conferences are listed on the website with previous presentations and remain there indefinitely.

Here is the link to the 2012 presentations: http://mbcn.org/special-events/category/speaker-presentations/

If you have any difficulty viewing the videos, please email us at: mbcn@mbcn.org