Helpline Corner: A Letter from a Caller
By “A Faithful Caregiver”
This is a letter that we received from a recent helpline caller. It demonstrates the critical importance of support empowerment and information and how it prepares you for partnership with your medical professionals. This letter was published with permission from its author.
THIS LETTER is long overdue, and words cannot even express my deepest gratitude for your organization that has provided so much help to my husband and me. When my husband was newly diagnosed with prostate cancer in 2012, it left me as a caregiver, devastated. I felt hopeless and afraid with nowhere to turn for support. I remember so distinctly my first call to your Helpline. My anxiety was through the roof, and Silvia Cooper, who is now the most selfless woman I know, assisted me by listening and asking me some tough questions, so that she could provide the best possible resources to us.
That April of 2012, Silvia changed my life. I had nowhere to turn for support. I just wanted someone to really listen, I had so many questions. Would my husband live? If so, how long will he live? These were just some of the anxiety issues I was facing. Mrs. Cooper was there for me every step of the way. Thank you for all the valuable resources! Based upon those resources, we were able to make a wise, informed decision and choose the best treatment options for my husband.
Further, PCRI Helpline educated us as to how to use correct terminology when dealing with the urologists, oncologists, and primary physician. Being able to communicate effectively with the team of doctors made all the difference in the world. We felt like we were heard. In my humble opinion as a caregiver, I don’t think we would have received the quality level of care if we had not been educated about how treatment for this disease can have major impacts on one’s health and well-being.
All I wanted at the time was for someone to listen and care about how I was feeling as a caregiver. During this difficult time, my husband had been dealing with his own issues as it relates to this disease. But I often felt like the pressure was on me. I learned to take one day at a time and take care of myself as well. I needed to remain sane and strong through the ups and downs.
I also want to thank Bob Each for cheering my husband up. My husband’s PSA is rising again, 4 years after having a prostatectomy. To see the smile on my husband’s face after he and Bob talked was a whirl of positive energy. Bob’s spirit is positively contagious, as his sense of humor about this disease is breathtaking and refreshing. My husband now calls Bob his ‘go-to man’ for any questions he may have regarding recurrence. Thank you, Bob. My husband said: “I will always remember that guy because his sense of humor about this disease helped me look at things in a different way.” So thank you, Bob, for reducing my husband anxiety when his PSA was starting to rise again. And of course, you reduced my level of anxiety too, which was probably higher than his.
The work that PCRI does is over and beyond our greatest expectations. As a caregiver, I feel much more confident communicating with my husband’s team of doctors and feel like I can stay on top of the current educational resources, so that my husband can receive the best quality care relating to his disease. Thank you for your time. Thank you for your continued dedication, working tirelessly to provide support to all of us caregivers and patients who are living with this disease and may feel as though there is no light at the end of the tunnel.
In closing, please know that the work that you all do at the Prostate Cancer Research Institute is not in vain, and you are making a difference in the lives of many people living with this disease.