About Debbie Woodbury:
You can also find Debbie on Twitter and Facebook.
A note from Sara Barton, The Practical Caregiver:
One of the things I love most about what I do and what reinvigorates me time and again, is the chance to speak honestly and openly with people who have wisdom to share. I asked Debbie Woodbury, an experienced patient educator, if she would be interested in answering questions for my cancer blog. I wanted to tap into that fountain of expertise and help cancer caregivers understand the real issues involved with breast cancer. It’s too easy to think that caregiving is about changing bandages and driving a loved one to appointments. Healing is as much about the heart and mind as it is about the physical body. I think she speaks to that in a voice that is authentic and wise.
Sara:
Debbie, you’ve had the chance to interact with a number of women who have been diagnosed, and you’ve seen what they go through and how it affects their lives. What should family caregivers understand about the common difficulties faced by breast cancer survivors during treatment and even after treatment is over?
Debbie:
When you get a cancer diagnosis it usually comes as a shock. Many of us have never been sick before and are suddenly thrown into an unfathomable world of medical terminology and procedures. You are under constant threat, have no way to predict what will happen next, and are overwhelmed by all it takes just to survive each day. In a flash, you confront your mortality. It’s like being shipped off to war.
Up to this point, the patient and caregiver are usually united in their terror. I can’t imagine how hard it was for my husband to wait outside during my mastectomy and TRAM flap reconstructive surgery. Patients and caregivers often part ways, however, once they’re out of the fox hole of treatment. That’s usually the point where caregivers want to move on because they think "the worst is over." This is a real source of disconnect between survivors and caregivers and survivors often feel guilty (and angry) about it.
Sara:
I think you’re right, that it’s a source of disconnect between survivors and caregivers. If anything, coming out of the fox hole is the time when the deep emotional impact of the whole experience is most likely to hit our loved ones, because the immediate physical crisis is receding. It’s really time to assess the overall situation and what it all means for the “new normal”. We tend to slap that "happy face" on everything and pretend life is hunky-dory, when it's really not. I think cancer survivors can sometimes feel pressure to "soldier on", when what they most need is to feel what they feel and process it. How else can you live with it? Families need to not stand in the way of all that.
I think sometimes, as caregivers, we're so afraid of what our loved ones feel, we don’t want to really know, because we don’t have a Band-Aid big enough to cover that psychic wound. We have to get past our own sense of helplessness in order to do right by our loved ones. And we can’t naively hope that by focusing on the positive, we can somehow help our loved ones avoid the potential recurrence.
Breast cancer survivors seem to need more support than any one person can provide -- why is it so important for survivors to share their wisdom, insight, and experience with each other?
Debbie:
I think the shock of a diagnosis, the burden of treatment, and the post-treatment disconnect between survivors and caregivers are common experiences of most, if not all, cancers. A breast cancer diagnosis heaps on an additional loss – the amputation of a very visible, “feminine” body part. Even with reconstruction, your body is permanently altered. This loss rocks many women to their core and it’s impossible not to be reminded of it every time you take off your clothes. It’s a lonely place to be, especially when family and friends want us to be over it.
We love our caregivers and watching them struggle with our disease is tremendously painful. That pain (and the guilt it can cause) can shut us down, lest we cause more pain. That’s why it’s virtually impossible to heal body image, sexuality, fear, and all the other emotional issues which arise without a support network of other survivors who “get it.” Sharing our stories validates our feelings and breaks through the loneliness of life beyond treatment. I call it the power of “Me too.”
Sara:
“The loneliness of life beyond treatment....” What a powerful phrase. But you’ve hit on an important point. I’m sure there are caregivers out there who feel that it’s just a matter of throwing more love at cancer survivors, as if that will make the pain fade away. The physical and emotional trauma of fighting the disease changes a person. I once heard a cancer survivor say she felt like she had been betrayed by her body when she was diagnosed with breast cancer. It seems like a matter of learning how to trust all over again, to believe that life can be okay, even with breast cancer. That’s not really something your family can do for you. It really does have to come from other survivors, helping you learn how to reemerge from your cancer cocoon.
How much do caregivers need to know about the specific details of what breast cancer survivors go through in order to better support the women they love and what are some positive ways to acquire that information?
Debbie:
The more caregivers know and understand the easier they make it for their loved ones. Of course, no one expects a caregiver to “get it” completely. That’s just not possible (just like it’s not possible for survivors to completely understand the caregiver experience.)
The best advice I can give a caregiver is to not assume cancer is “over” and to listen to and engage your survivor. I remember an especially poignant comment on WhereWeGoNow written by a husband of a breast cancer survivor. His wife asked him to read my post, Running on Empty – Coping with Cancer Stress. The post was important to her because reading it made her feel less alone. It also sparked a conversation between them and made him realize that “As a spouse, it is easy to focus on the physical aspects of dealing with this disease. After talking more with her and reading this post it is readily apparent that there is an on-going mental battle that will continue to wage with both good and bad days.”
Sara:
That really illustrates why it’s so important that caregivers learn as much as we can to help our loved ones. When we see life through their eyes, we can recognize opportunities to step up to the plate and give what our loved ones really need in terms of support. In what ways can caregivers prepare themselves to recognize important sign posts and milestones?
Debbie:
Just like the survivor, a caregiver should create his or her own support system. Find medical professionals, including therapists, who readily share information and offer support. Join caregiver support groups. Read blog posts written by cancer survivors, who are amazingly open and honest about their experiences. We heal physically and emotionally from a cancer diagnosis and treatment. The more information you collect, the better able you are to recognize the sign posts and milestones of that healing and give support. What is most important is for everyone, survivor and caregiver alike, to appreciate that what the survivor is going through emotionally is a normal part of healing.
Sara:
So true. And healing is very much a multi-layered process that takes place over time. It can feel like one step forward, two steps back, especially as survivors process their emotional experiences with the disease. I think sometimes cancer caregivers misunderstand what their loved ones are going through when they express anger or sadness at their losses. What are some positive things that caregivers can do to help breast cancer survivors feel less lonely and less isolated?
Debbie:
A few months after my mastectomy and reconstructive surgery my husband and I were invited to dinner with friends. I told him I didn’t want to go because I was tired of telling people I was fine when I wasn’t. Being a pretty straight-forward guy, he suggested I tell them the truth. The idea actually shocked me, because I was desperately trying to hold it all in, but it also made sense.
We went out to dinner, the inevitable question was asked, and I answered honestly. The reaction I got - empathy, concern and support - shocked me. Not because I didn’t expect it from good friends I knew to be wonderful people, but because I had been isolated for so long and didn’t feel safe sharing my feelings.
That discussion was a turning point for me. More than anything, I needed to know it was okay to be where I was and that I deserved support. As wives and mothers we are usually the emotional caregivers. A lot of us just aren’t comfortable asking for it for ourselves. A caregiver who makes us feel safe to express our feelings opens the door to communication and helps end our isolation.
The other thing caregivers can do is encourage their loved ones to create strong support networks. This is vitally important for two reasons. First, no survivor can effectively heal without the validation of others who understand and emphasize. Second, no caregiver should take on the task of being the sole source of support for a survivor. It’s an impossible job and bound to burden the relationship.
The bottom line is this: We are women and most women like to talk with other women about our lives. Now that cancer is a part of our lives, we need the sisterhood even more. As we share, cry, and even laugh, our load is lightened and that is the precious gift of support we give to each other.
Sara:
Your words have a powerful resonance, Debbie. I’m sure there are breast cancer survivors out there who needed to hear your message today. And I’m just as sure there are cancer caregivers who will take these words and find new ways, meaningful ways, to support the women they love. A good caregiver never stops trying to find what will bring true comfort to a loved one. As you said, we really need to let others into the caregiver circle. We should never feel left out of the process when our loved ones need to get support from other breast cancer survivors. It’s a matter of opening our eyes and our hearts to what is needed, regardless of who brings it to the table. That sisterhood of survivors provides some powerful medicine to women going through the healing process, and the more we encourage and support our loved ones honestly and effectively, the better life will be for everyone. Thank you so much for sharing this with us.
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