Patient-Centered Care

We Can Do Better for Metastatic Breast Cancer Patients, Just Ask

The ribbon for Metastatic Breast Cancer was designed by Laura of My Stage IV Life. Here’s how she describes it: “Pink – The universal color of breast cancer (and still my favorite color). Gray – the nowhere land where a metastatic patient lives, trying to come to terms with a death that can be near or far, and trying to live (and love) as much as we can within that unknown time frame. Black – the end of our fight, when it might seem like cancer has won, except, if we leave love behind, we are always the winners!”

October is Breast Cancer Awareness Month which I think everyone knows by now. It would be difficult to forget as the world seems to be awash in pink. And for some of us, October 13 is the most important day of this month – it is Metastatic Breast Cancer Awareness Day. I am a member of that exclusive club that no one wants to be a part of. If you see someone wearing the standard pink ribbon with a black and grey bands through it this month, that woman has metastatic breast disease. She may need an extra hug. As I continue to make my hour trek to the infusion center every third week, I always drive back home thinking of things that have made my make patient experience better or ways that could even improve it, if only someone would ask!

Through the Eyes of this Patient
Here are some of the things that have been on my mind:

  • Ask us whether we would like to have our treatment in private or with others. My healthcare organization just opened a new hospital and there was much discussion in the layout of the cancer center. It was decided that part of the center would have private rooms and another part would be a wide open space where patients could receive treatment together. I live in rural upstate New York, sparsely populated in many areas. We have discovered that many patients are enjoying the opportunity to sit and make new friends while they receive treatment. I, on the other hand, prefer a private setting. But unless you ask us, you might not know!
  • At my hospital, there is a local church group that quilts or crochets blankets for the cancer patients. It gets mighty cold here in the winter, and it is such a nice touch to be wrapped in a blanket that you know was prayed over while made and was made with you in mind. Sitting for hours like some of us do, having a cheery blanket instead of an institutional one is a small but very kind gesture for patients.
  • I have gotten to experience being bald twice due to chemo and I can’t tell you how much I appreciated a basket of knitted caps that would be passed around at the hospital. I could never pull off that 70’s Rhoda long scarf tied around my head look without feeling goofy, so it was always nice to pick out a different hat each time I went. (When you are bald for months on end, you do need a few colors to get you through life.)
  • I think offering thick socks in the winter might be a good idea too. Our circulation is not the best and the warmer we can get, the better. I think there would be churches or other volunteer organizations that would take on a project of blankets, hats or socks, don’t you? I would just caution a group not to make everything pink as there are a lot of women with breast cancer who do not find that pink reminder helpful. Some do, others don’t.
  • Meat soupIf someone were to ask me about being hungry while I receive treatment, I would tell them that I often am! My infusion center does a nice job of providing snacks (cookies, crackers) and drinks both hot and cold. And while I am very appreciative of that, do you know what I would like? If during the lunch hours, I could have something a little more substantial. A half of a sandwich? A bowl of soup? Some of us are in no shape to eat anything, but some of us are. When I have forgotten to make my lunch before I leave for treatment, I end up eating too many cookies and then feel regretful!
  • I have written this idea in other articles but I keep thinking one day this idea might catch on! I think having blanket warmers at the entrances of hospitals would be a fabulous way to greet and say good-bye to patients. They would not take them home but once a patient is dropped off, a volunteer could wrap them in a blanket before seating them in a wheelchair to be taken to wherever they are going. Or think about the patient who is being discharged and their loved one has gone to get the car. There they sit, in the winter, often freezing while the hospital doors open and close. Open and close. If they had a warm blanket around their shoulders for those 5-10 minutes of waiting, what a great lasting impression for the hospital it would make!

Small Touches, Big Impressions
None of these ideas is earth shattering which makes it all the better, I think. Small ways to make big impressions with patients. I am sure there are more. You might be surprised what you find out when you start asking patients, “If you could change one thing to make your time with us better, what would it be?”

Editor’s note: For resources and facts about Metastatic Breast Cancer, visit the Metastatic Breast Cancer Network at www.mbcn.org. And be sure to read Sherri’s guest contribution, “Joan Lunden, Give Me a Call,” on the MBCN blog.

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