Tips for Breast Cancer Caregivers
It wouldn't be right to let Breast Cancer Awareness Month slip away without a tribute to our caregivers. I know how important my husband's constant support was to me. I still count on him to get me through my bad moments with scares about recurrence and to listen to me whine about my side effects.
Richard Smith deserves special kudos because he is an important support for the hundreds of women in the Inflammatory Breast Cancer (IBC) community. New Jersey native, Rich joined our mailing list when his wife Doracina was diagnosed with Stage IV IBC in 2000. We got to see his love for Doracina as he wrote in with questions and comments about her treatments. We watched his anguish as her condition worsened until her death three years later at age 62.
Amazingly, Rich stayed with our group. He is often the first to write in with a word of encouragement to the newly diagnosed, and he is passionate in spreading the word that breast cancer doesn't always start with a lump.
In a recent letter, he shared his experience as an advocate. "A while back I had asked someone at a clinic if it were OK to leave some IBC brochures in their lobby. After explaining IBC to THE NURSE she said that it would only "scare Women needlessly." "After all, the few that get it can't really do anything about it." Guess she didn't hear me when I said that early detection is not important. It is imperative. I wish my Wife, Doracina, were aware and "scared" of IBC 10 years ago.
"Keep getting the word out girls. . . . Tell you the truth, Women DO LISTEN and ask questions. In my few years of talking to Women about IBC I have come to respect Women as interested and intelligent and not prone to panic. Women don't get scared, they get smart and that is what will ultimately conquer this disease."
Rich's confidence in the ability of ordinary women to understand medical issues and make wise decisions about their health has been a constant source of encouragement to our group. Rich also works with other IBC'ers to set up tables with information about IBC symptoms at Komen races and other breast cancer fundraisers.
I recently asked Rich for some tips for other caregivers. He was somewhat reluctant to give advice because he says every situation is different so caregivers need to personalize their caregiving. But he did have some general suggestions.
1. Be efficient. When Doracina told him, "I can't have you bawling all the time," Rich realized that he would have to be somewhat detached to do what needed to be done.
2. Stay on top of insurance issues.
3. Learn everything you can about all the treatments and drugs. Rich looked up new treatments and wrote into the support list about other patients' experiences with each new treatment that Doracina with through.
4. Learn how to talk to doctors. "You can't attack or challenge doctors," says Rich. "Find a tactful way to ask about treatments."
5. Understand that the patient's anger about her cancer is not personal even when it seems to be directed at you. Sometimes if she's mad, you just have to take it. Rich told me about the time that Doracina hadn't been able to eat much. One night she thought an éclair might be good, so Rich went out searching everywhere for an éclair. When he got home and gave it to her, it wasn't the kind Doracina had in mind. In a fit of frustration, she threw the éclair at Rich. Soon they were both laughing.
6. Be resilient and find the kind of support that fits your personality. Rich said that he wasn't much for face-to-face support groups. The IBC mailing list and a few minutes for a cup of coffee to recharge were what he needed.
As Breast Cancer Awareness Month comes to a close, be sure you thank the support people in your life. It may be your husband who cleans you up after you vomit. It may be your friend three states away who listens to your long, rambling rants about what scares you. It may be your coworker who covers for you cheerfully when you miss work for medical appointments. These are the people who make our cancer journey easier to bear. Let's remember to express our gratitude.