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Health Advocate

Newly Diagnosed?

Getting to grips with that frightening news

Learning that you have cancer is shocking and overwhelming. It numbs you and makes you feel vulnerable, scared, and quite unlike your usual self.

Remembering my family’s experiences, the first thing I would say to someone in this position is: Take a deep breath. And another. As your mind races, try to quiet it. (Breathing deeply helps!) Then try to realize and truly understand that nothing is going to happen to you immediately. You have time. No decisions need to be made right this minute. Say to yourself over and over that you will have time to think things through.

How my family handled things

There is no right or wrong way about dealing with bad news. But I can share with you how my family acted. After the biopsy and while I was in the recovery room, my doctor broke the news to me. He was gentle and reassuring. Then he told my mom and sister. While I was getting ready to come home, my sister went into what I called “commando mode” and alerted the rest of the family. It was before email and Skype, but she managed to contact the rest of the family, even though they were living all over the world. That night we ate dinner and watched movies. I can’t remember what movies, but all I know is that we didn’t talk much about “it.” Some family members came round and we had a little cry, but I stayed away from the phone. I needed to chill because I was numb and in shock.

Make to-do lists in the next few days

If you don’t have a next appointment with your doctor, make this first on your to-do list. Another good idea from now on is to try and get a good night’s sleep every night. Take one of those over-the-counter “PM” pills if you think you need a little help. Or have a nightcap. If you’re not sleeping well at night, don’t hesitate to tell your doctor!

Essential information

In the next few days, as you are getting over the shock of your diagnosis, you’ll need accurate information. But where to start? Don’t panic. And please don’t go Googling everything with the word cancer in it because that will just drive you crazy! I would suggest the following:

Here are some guidelines I find useful:

  • Visit canceradvocacy.org. This nonprofit organization is the National Coalition for Cancer Survivorship (NCCS) where you’ll find some really wonderful information. (I learned about them in the 90s when they first went to Washington to advocate on behalf of cancer survivors, and they do incredible work for all of us.) Order the free Cancer Survival Toolbox®—a self-learning audio program to help you develop important skills to really understand the challenges of your illness. The audio CDs are great because you can listen to them, and so can your family. It helps everyone. And when you’re newly diagnosed, it seems easier to listen and learn rather than read and learn. I found that my thoughts were jumping all over the place, and it was difficult to concentrate on reading things. Also, you’ll hear some incredible stories from cancer survivors in their own voices, and this will help you realize you’re not alone!
  • If you are diagnosed with breast cancer, another site I would go to is Living Beyond Breast Cancer at www.lbbc.org. You’ll find a guide for the newly diagnosed, useful FAQs, recommended reading, links, and a list of resources
  • By far my favorite and most helpful person is Bernie Siegel. Listening to Bernie’s voice and doing his meditations are the reason I was able to go into the operating theater. I was literally petrified, so that’s why I recommend listening to his DVDs. If there’s a workshop nearby, don’t hesitate to go! I attended one, and it was so inspiring. When you come face-to-face with people who have a similar diagnosis, and you can see that they’re doing fine, you will feel encouraged and hopeful. Visit http://berniesiegelmd.com/ to learn more

Communicating your health status

And finally, take a look at www.caringbridge.org I wish we had had this site when I was sick. Caring Bridge is a convenient space that brings family and friends together with the aim of making your health journey easier. You may feel you don’t want to give out a lot of details about your illness. But the site is confidential—only the people you invite to join you will see anything that you post.

This is a wonderful way to let your support group of family and friends know what’s going on, all at the same time. It saves you from endlessly repeating things. Keeping people up to speed with your health status can be very draining. It can be a difficult balance because your circle of supporters are concerned about you, and they want to know how you’re doing. People I know who are part of Caring Bridge say that as they get deeper into treatment they’re grateful for the supportive messages that everyone leaves for them. When they feel up to it, even if it’s the middle of the night, they can reply and share more.

Working things out with friends and relatives

Being newly diagnosed and learning to be a patient is a steep learning curve. You will find that lots of things shift. I wrote a poem about it in which I said it’s rather like being split open like a peapod. You discover so many things about yourself that you didn’t know. And your emotions are up and down and all over the place. All sorts of people give you all sorts of advice. Sometimes this can be annoying. Try to remember that they probably mean well—even if it doesn’t sound like it. Thank them politely, and if you think their information may help you, ask for more details. But be cautious: Sometimes “advice” from others can be useful, or it can derail you—and you don’t want that to happen. I remember one friend thought she was helping when she told me about someone she knew. But it turned out that this friend hadn’t made it and she was even younger than me. I was upset for days! Realize you are extremely vulnerable, and protecting yourself at this point is a must. Take care. Until next time...

Yours in good health!

Louise Becker MA
Health Advocate

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© Louise Becker 2012