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Ginette Weiner began her fight against breast cancer in 2008, and underwent surgery, chemotherapy and radiation therapy. She is a patient at Mayo Clinic in Arizona and under the ongoing care of Donald Northfelt, M.D. She brings a fresh, honest and engaging perspective to patients and their loved ones with the following advice for breast cancer patients and their families.
Advice for Loved Ones
1. Do not tell us cancer or things like it "happen for a reason." A well-meaning family member said this to me shortly after I was first diagnosed. It literally took my breath away, and left me feeling cold and numb. We feel as if we're already being somehow "punished" by the universe as it is. Telling us there is a "reason" we have cancer is not helpful. (Did I get cancer because I'm a bad person?) I don't believe my cancer happened for a "reason." It just happened. Better to say things like, "I'm sorry this happened to you," or "It must feel so unfair, I'm sorry." And leave it at that.
2. Create a safe atmosphere (non-judgmental, non-critical), for us to be allowed and encouraged to vent, rage and share the wide range of feelings we have, some of which may be seen as childish, fearful or irrational. Practice becoming a good listener. Allow for silence. You can silently be there for us sometimes, unconditionally accepting of us. Men often feel they have to help, to "fix it." You don't have to fix it. Being quietly there and letting us know you're there for us for the long haul, regardless of whether we're sad or angry, these things are helpful.
3. Please don't tell us all about your experiences with someone who had cancer and died or suffered. This is not helpful. This is a no-brainer, but you would be amazed at how many times others have somehow felt the need to share horror stories with me. Do tell us all about someone who had a good outcome if you want to, but please keep the horror stories to yourself. Try instead saying something positive, like 'I know your future will be filled with good things, and I wish the best for you.' Sound better? (Yes, it does.)
4. Please try not to cringe when we talk about our wills or end of life care or advance directives or burial plots. While difficult to discuss, it is important for us to be able to talk openly about these things and make sure we have our affairs in order, just in case. Try and make this discussion as matter of fact as possible and realize that we will feel better if we have these settled, regardless of outcomes. Getting this done also helps us to feel we can exert some control over our future wishes, which helps to balance the loss of control the cancer has put upon us.
5. Please don't ask us how we're doing unless you really want to hear about it. I had a family member who recently asked what was doing with my chemo. I proceeded to tell her my dilemma of four vs. doing the full eight chemos. After I was finished describing my dilemma, she responded by saying that perhaps I was better off "discussing this with someone who knows more about it." Ouch. Better to say, "This is such a difficult decision to make. I know you have a strong network. What have others said about this that was helpful?"
The moral of the story: Don't ask us if you don't want to hear what's going on. Period. And if what we're telling you is out of your frame of reference, just say, "This sounds like a hard decision to make," or say, "I trust your supports will help you to make the best decision you can."
The moral of the story, part two: Don't call us on your cell phone while you're shopping! Call us from home when you can give us your attention.
Advice for Us
1. Use humor. Use humor. Use humor. Try and find the absurd and ironic in your treatment. For example, after my third surgery, I was in the post-op recovery for what seemed like forever. The nurse told me my blood pressure was too low to be admitted to the medical floor, where a nice TV and softer bed awaited me. I asked her if I could get on the phone with the medical floor, tell them what a good patient I am, how I could be a value-added addition to their floor, and otherwise advocate for myself. She chuckled but said nothing. Then I spotted the charge nurse and said, "Who do I have to sleep with to get admitted to the medical floor?" (I'm from New York. We just talk like that.) He was laughing so hard I thought he might need to be admitted, himself. When he regained his composure, he said, "I'll see what I can do."
The moral of the story: It is possible for you to try and use humor to lessen your emotional and physical pain and cope with The Horror Of It All. It helped me a lot to do this.
2. Try and do as much as you can while you're recuperating. For a while, I was spending too much time in bed feeling sorry for myself and could not motivate myself to do much. I eventually got tired of this and one day attempted to do laundry. To my delight, I was slowly but fully able to unload the dryer with one arm. When I couldn't carry the basket full of clean clothes, I was able to kick it across the floor and make progress toward the bedroom. I managed to be the One-Armed-Laundry-Queen-For-a-Day, which made me feel semi-normal and useful, and on the road to feeling human again.
The moral of the story: See what you can do. Get (safely) creative with chores and other things you'd normally be doing. It helps you to feel less like a patient and more like yourself again, no matter how small or silly the chore may be.
3. Think about sending letters of appreciation to the CEO of the hospital or the nursing supervisor for the wonderful caring you received. Those in the health care field are often overworked and they hear the complaints and don't as often hear the compliments. So, while you may have thanked your individual nurse or another staff person at your health care facility, think about sending a letter with compliments to their supervisors or go straight to the top, the CEO.
The moral of the story: Having cancer leaves you feeling helpless and powerless, but there is something you can do to be pro-active. You can send that letter, praising your health professionals and staff. This will make you feel good. And make them feel good.