Inspired Advice: What Do You Wish You Knew When First Diagnosed?

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.*

There’s no right–or wrong–way to feel

• “I wish I knew how hard a stage IV OVCA journey would be. I thought I’d have chemo and get better. I’m tough and determined and it has been a struggle sometimes to keep a positive attitude.”

• “After chemo and surgery I thought six weeks I would be back to normal. I wish I would have understood it took longer to heal mentally and physically.”

• “How much patience it would take.”

• “That I have enormous strength and a strong will to live as long as I can.”

• “That I am stronger than I thought. That I can get through it. That people really do care.”

• “It’s really difficult to know the future…don’t stress about it. It’s normal to miss a treatment because of low blood counts.  It’s normal to feel tired.  Live each day fully. Enjoy the beauty in little things.”

• “There was no Internet and I didn’t ask questions because I didn’t want to hear anything bad. I knew my brother, a doctor was looking out for me. There is nothing I wish I had known at the beginning. Thank goodness I didn’t know that my husband was told I had one chance in six of living two years. Thank goodness I didn’t know that one doctor told my husband to be prepared to raise our children alone.”

Practical tips to keep in mind

• “The disease can recur but can be treated. Losing your hair is hard but it isn’t the most important thing. Chemo is a killer but there will be healthy days ahead.”

• “That some patients are very frightened and negative.  I stay away from them.”

• “To freeze my feet even colder to prevent neuropathy. I thought I was icing enough the feet, but the heat from my feet kept melting the ice too quickly.  The ice on my hands always stayed very cold. Not sure if ice makes a difference with neuropathy, but I would make sure feet are more consistently cold throughout chemo. Tell oncologist right away.  He can lower Taxol dose.”

• “That I should have paid more attention to what my body was trying to tell me.”

Reaching out, and finding hope

• “That I was going to live…”

• “That I would still be alive 7 years later.”

• “To let people help you. It’s good for them and good for you.”

• “You are not alone!  Other survivors are so willing to share experiences, wisdom and strength!!”

OCRA’s ovarian cancer online support community through Inspire.com 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.

* Sharing ideas and experiences can be extremely helpful but, as always, we advise speaking with your physician before making any dietary changes or adding herbs, teas, vitamins or supplements to your routine.