Taking Care of Your Health

'What I Wish I Knew' - Advice from Patients and Caregivers on Living With Cancer

September 14, 2017


Knowledge is Power:

"I'm not going to talk to anyone about my cancer," I stated.

"Stephanie," my doctor gently replied, "when you are ready, you may want to ask someone how they handled a situation."

I listened; thinking, "I can’t imagine." Days passed. Suddenly one morning, I could no longer wear lipstick.

I emailed friends, "How did you get your lipstick to stay on?"

They replied with simple solutions.

I smiled. My doctor was right.

– Stephanie Hulbert, Peer Visitor, 
Patient and Family Advisory Program

What I Wish I KnewWhere can I Find Information?

"Don’t just randomly search across the Internet. Ask patients and caregivers for websites they use, call the American Cancer Society or ask the medical staff.

Knowledge is powerful. It was important for us to educate ourselves about my wife’s cancer. The more we knew, the easier it was to discuss options with our medical experts and to decide on a treatment.”

– Pat Sullivan, Peer Visitor, 
Patient and Family Advisory Program

Who am I Going to Find to Bring with Me?

"I looked at the instructions for the test – 'You must bring someone with you.’ Who could go with me during a week day? After reviewing a list of potential family members and close friends, with hesitation, I called a friend, ‘Can you… ?’ She did.

That was at the beginning of the journey; and she remained with me until the end. She became my ears, my eyes, sounding board and a sister.

– Stephanie Hulbert, Peer Visitor, Patient and Family Advisory Program

I Never Asked for Help Before

"Don’t feel that accepting help is a sign of weakness. People want to help and they don’t know how. A new diagnosis is overwhelming, let the person closest to you delegate. The small things count.

Picking up children from school, doing laundry, mowing the lawn, setting up a meal train... say yes! The more time you can focus on your health and healing, the less stress you will feel during such an overwhelming time."

– Emerald Karakoudas, Peer Visitor, Patient and Family Advisory Program

Responding to Too Many Texts and Emails is Hard

"The decision to share your diagnosis is individual, but personally, using social media as a way to update friends and family was tremendous. It not only eliminated the guilt from having to answer each and every phone call and text, but the love and support I received would pick me up when I thought I could no longer go on.

– Emerald Karakoudas, Peer Visitor, Patient and Family Advisory Program 

What I Wish I KnewI was Dragged to a Support Group

"When I was first diagnosed with cancer, before I even had my surgery, my husband dragged me to a support group. I didn’t think I wanted to be around other patients. However, that experience showed me there could be camaraderie, new friendships and even laughs, not only that day, but throughout my journey."

– Robin Gordon, Peer Visitor, Patient and Family Advisory Program

Friendly tip

"Find a support group. Only people who are walking in your shoes can truly understand. Not only will you feel supported, but there is so much information shared and learned from these groups. I am a year and a half in and feel as close to some of these people as I do my own family members." 

 – Emerald Karakoudas, Peer Visitor, Patient and Family Advisory Program 

Content for this story is from PARTNERS summer 2017; a newsletter of the Patient and Family Advisory Program. For more information about the Patient and Family Advisory Program, please email PatientAdvisor@Moffitt.org or call 813-745-1390.   

Learn more about the Patient and Family Advisory Program.