Breast Cancer: The Unknown Territory of Healthcare, Psychosocial Aspects of Care and Asking for What You Need
Marla K Ruhana, LMSW Featured as a Guest Writer on Breast Advocate App
Learning you have breast cancer is devastating. For those who aren’t employed in healthcare, often, even when you are, navigating your way to the right physicians and hospitals can be daunting.
Many share tragic news with family and then like an octopus you’re suddenly inundated with tentacles of recommendations and referrals from caring individuals. Stunned by the diagnosis, It’s difficult to know who to trust. Often feeling overwhelmed and vulnerable, in shock or exhausted, we let others handle our plan of care. Even if you are making your own decisions in the midst of crisis, it’s often while you’re in a fog and unable to see straight.
So many say they didn’t care for their physician but felt a sense of urgency to get treatment underway, while others simply didn’t have the energy for a second opinion.
It’s important to listen to our intuition aka our gut. If something about a healthcare provider’s energy, demeanor, hastiness, or dismissiveness disturbs you, pay attention. So many second guess themselves especially during a crisis. You are entitled to compassionate care and deserve to be heard. However, there is always the exception to the rule. We’ve all heard, ”Oh this physician is the best surgeon but does not have good bedside manner”. Make a mental sticky note of those who might be extremely ethical and competent, but do not ignore the suggestion that bedside manner is poor. I’m referring to healthcare providers who make you feel more anxious and rushed and you leave thinking,”What just happened? That was so weird!” Pay attention and listen to your gut. Do not underestimate your own brilliance. Don’t assume your physician is the best based upon one recommendation. A second opinion is always a good idea.
It is extremely important to create a protective shield around you. Find your circle of protection in knowledgeable people. They might not be who you assume they’ll be. They might be strangers you meet along the way. It is important to listen to your intuition.
Battling cancer is a full time job. Make a list of everyone who will make your journey easier. You need to ignore toxic people and trust knowledgeable and competent medical people within your inner circle.
This inner circle might include nurses to assist with drain tubes, showers, bandages and so forth. The middle circle might include those who will assist with household, children, school, workplace, setting up meal delivery, cleaning, errands, insurance calls, appointments and transportation.
Create an outer circle consisting of people who will provide emotional support. Examples might be a friend you may need to spend the night if your spouse travels for work or if you are single. Create a calendar for visitors. The calendar ensures you will not have several visitors the same day. It also aids in preventing loneliness and isolation. Ask for what you need.
Reach out to survivors and join credible groups on social media. Visit a local store for prosthetics, bras, bathing suits, wigs, button down pajamas and ponchos if you’ll have drain tubes. Meet with survivors and their spouses and family members to learn what worked best for them.
If you’re religious, meet with a priest or others in your church for emotional support. Invite them to visit you during treatment.
Ask for recommendations to alleviate sleep deprivation. Should you sleep on the couch if your bedroom is on the second floor? Do you need to be propped up with a pillow with arms? If so, order one online and be sure to buy yourself a soft, comfortable bathrobe. Tell your physician if you’re in pain. No one should suffer and with genetic testing, they can find the medication that is best.
Be sure to have your favorite movies, books and puzzles available to fill your time between visitors. Make sure you drink water and get plenty of rest while you recover and do not overexert. If family members are not helping, ask a friend to lend a hand, as you would do for them.
No question is silly. Write them down for your nurse pals and physicians. Keep the lines of communication open with those in your front row. Think of them as your advocates and text them or call with questions or concerns. It might be someone from the past who was incredibly knowledgeable and caring while you cared for an aging parent. Reach out and find those people. Add them to your front row.
If you don’t feel heard on your journey, seek out the help of a medical social worker or psychotherapist. Allow them to assist you on your path. Be proactive with the intention of alleviating unnecessary stress, make your journey as effortless and peaceful as possible.
Quality of life is important. If invited to a family wedding, for example, ask your team if it may be an option. Request orders for physical or occupational therapy to increase your strength and endurance and improve your abilities to perform activities of daily living. Your function may improve then prior to plans for the wedding or travel.
Do not hesitate to ask your doctor questions in regards to needs. Be sure to utilize the breast advocate app as a constant resource during treatment and recovery.