"Advocating" (3)

Advocating for oneself can prove difficult especially in the face of a cancer diagnosis. So another way to self-care is to assign the role of advocate to a friend or relative. They can be of help in several ways. They may offer a clearer perspective on things and take notes at appointments to explain to you later. Friend-advocates can be available to share ideas and fears with, or they may ask a question you hadn’t thought about. Also, an advocate can provide support by simply being there, offering comfort during challenging times.

Even if you feel well enough to function as a self-advocate, it’s a good idea to always have someone with you for appointments and treatments. So many unknowns can occur in medical settings. A few which come to mind follow.

1. You may forget some of what a doctor said. You may need reminders of the directions for wound care or to pick up a prescription. Chemo-fog is a real condition!

2. Your friends can provide comfort in a way staff cannot. For example, they can go get you food while you are in the chemo chair. Advocates can be more attentive to your needs than the busy staff.

3. Just having a friend “be there” for you helps you to relax.

4. Hopefully not, but your advocate may even be needed to address medical problems! The staff usually notices concerns first, such as if an IV bag has emptied and needs to be replaced, but not always.  

An extreme example of how essential it is to have an advocate stay with the patient is recounted by Deidre, whose daughter has triple negative breast cancer. Deidre sat with her daughter for her first chemotherapy (Taxol). The nurse did not explain the possibility of any adverse reaction. She simply started the IV drip and walked away to attend to other patients. Suddenly, Deidre’s daughter’s face and lips swelled to double their normal size as she turned beet-red! Deidre ran for the nurse as her daughter’s blood pressure bottomed out! She was in full-blown anaphylactic shock! Personally, I find this story shocking since in my treatment room, there were three nurses at their station looking at all of us and two nurses roamed the room, checking people. Maybe my facility was unusually well-staffed, but I’d like to think that the one Deidre’s daughter went to was a rare exception. However, no matter how excellent the facility is, it can only help to have a second pair of eyes, alert to problems.

A story shared with me in a support group likewise illustrates how helpful an advocate can be. Diane recounts a time last year when she was getting a chemo infusion through her port. A gray-haired lady named Lily who had lung cancer sat near her. Diane watched as the nurse stuck her repeatedly in her frail arms, trying to get a good vein to administer the chemo. She felt so badly for Lily that she finally got up and walked, attached to her IV pole, over to her. Diane told Lily that she did not have to be tortured every week and explained how easy a port is to access. Diane discovered the lady had not even been offered a port. The following week, Lily rushed over to Diane before her treatment started and pulled down the collar of her blouse. She proudly showed Diane her new port which she had demanded. From then on, they became good friends. Diane is the type of empathetic person one of my favorite quotations describes: “I love when people who have been through hell walk out of the flames carrying buckets of water for those still consumed by the fire.” (Stephanie Sparkles)

Ideally, you will have a friend or loved-one to serve as an advocate for you. If you don’t, another good option is to call the American Cancer Society to request a mentor to talk with you. The ACS matches your age and cancer type with a volunteer who can answer questions and give you support on the phone. Of course, this isn’t as personal as someone actually being with you, but the volunteers are very kind and knowledgeable.

Whichever route you decide to take to reach out to others, whether a friend, a support group, or a phone mentor, you will find having someone to act as an advocate will alleviate your worries and provide helpful information. Cancer is a journey you don’t want to take alone. Accept all the help you can, even if it isn’t perfect or continual. And don’t refuse help on the grounds that you can’t pay people back. One day, when you are feeling better, you can become an advocate for others. Sometimes, even before you are well, you might be able to help others by being an example. That was my goal, anyway. As Mahatma Gandhi wisely understood: “The best way to find yourself is to lose yourself in the service of others.”

Reflection:

1. Are you the type of person who finds it difficult to accept help? Why?

2. What are some of the ways others have helped you during cancer treatments?

3. Have you thought about how you would like to "give back” if given an opportunity?