Those who have faced an ovarian or gynecologic cancer diagnosis have so much to offer to others going through a similar experience – be it support, tips or friendship. Inspired Advice is a blog series that tackles specific topics – from managing treatment-related nausea to intimacy post-diagnosis – and shares advice and reflections from our OCRA Inspire Online Community. They are, in many ways, the experts.
- “A listening ear…when I need to talk about how I am feeling, I want my husband to listen and for him to share back how he feels about our situation.”
- “Support, hugs, love.”
- “A good listener!”
- “Patience and love.”
- “Of course love and support are the easy answers. But I think what goes with that is their ability to let me be me. Sometimes I want to talk ‘what if’s’; it’s how I deal with the uncertainty of this disease. It doesn’t mean that I think the worst is going to happen, I just need to know I have a ‘plan.’ I don’t want to feel like I have to hide my feelings because it might upset them.”
- “To let me plan my death. To allow me to say goodbye. Everyone tells me, ‘You are going to live many good years. We know many ovarian cancer patients who are long-time survivors.’ I do appreciate those positive stories, but I am aware of women who are not long-time survivors and fought with several different chemo treatments. That will not be me. But no one understands my need to prepare for a dignified death preferably at home in my bed with Hospice. I mention this and everyone laughs at me.”
- “I appreciate support and positive encouragement. I don’t want to hear others’ war stories.”
- “Understanding when I need alone time.”
- “When I worried, I needed reassurance from my husband, mother and brother, who is an ob/gyn. On my first birthday (42) after my diagnosis, my brother phoned me, and I asked him how old I would live to be. He said I would live to be 95. He told me what I wanted to hear. I thought, ‘he’s a doctor, he should know!’”
- “Tell me I will be okay.”
- “Listen to my fears; hold me on my bad days.”
- “Their encouragement and their positive words when milestones are reached.”
- “Unconditional love and support shown by their actions.”
One thing is clear … each person’s experiences and emotions around this disease is personal. What might be perfect for one individual may be the very thing most loathed by another. If you want to really know what a loved one needs, perhaps the best thing to do is ask. And then really hear their response.
OCRA’s ovarian cancer online is a support community through Inspire.com which offers a safe and private place to share encouraging feedback, compassionate support, and honest personal experiences. There are members from across the world who share their questions, concerns, successes and struggles with honesty and courage. Learn more or join our online Ovarian Cancer Inspire community.