Back in 2005 I was upset. I knew the statistics about women diagnosed with late-stage ovarian cancer. I knew that Gilda Radner died from that disease. I knew the disease was relatively rare, roughly 700 women diagnosed in NJ a year. That is why I didn’t meet any women in my cancer center with the disease while I was in treatment. At the time all I wanted to do was talk to someone who had the disease and lived. When I saw a brochure for Cancer Hope Network in the waiting room, I picked it up and brought it home. I hesitated at first to call. I’m not too keen on cold calling someone. But one afternoon as I sat in bed I went ahead and called. I told the person who answered that I just needed to talk to someone who had been in my situation and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer. I spent the next half hour talking to a woman diagnosed with stage 3b serous ovarian cancer, lived in my state, received the same chemotherapy and surgery and was a 5 year survivor. It was wonderful.  I was not alone. I could survive too!

When I was out of treatment one year, I called Cancer Hope Network and said I wanted to be one of their support volunteers. I attended training and within a few weeks I was talking to other women with ovarian cancer. I did take a break when I recurred and was in treatment but once treatment was done I was back on the phone. I have not had to pause my volunteer work since 2009 except for fun reasons like being on vacation.

Over the past 13 years, I have spoken to women diagnosed with ovarian cancer from NYC, Florida, California, Indiana, Texas, Kentucky and Kansas, just to name a few. Since I have taken part in a few different clinical trials, I have also been matched with women who may not have ovarian cancer but are considering a clinical trial. Some of the women I speak to are treated at the top cancer centers in the country and others are treated at small community cancer centers. I have talked to women who are a short ride from their doctor, those who drive eight hours to appointments and some who travel by plane and stay at hotels. During the past few years, I not only talked to women on the phone but have kept in touch monthly with women via e-mail. 

Since the spring of 2020, my discussions with women have also included the impact Covid -19 has had on their treatment. Many have bravely continued attending their treatments by themselves since caregivers were not allowed to accompany them. Others have had follow-up appointments using telemedicine video calls. Very few of the women I spoke to, although fearful of contracting Covid-19, postponed their treatments for that reason. Many are looking forward to being vaccinated if they have not already been. But no matter what we talk about in our calls or emails when I say “I felt that way too” the reply is the same “thank goodness I thought it was just me.”

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A year ago, a few weeks after my lung cancer diagnosis, I had a four-hour surgery to remove a tumor in my femur. A 15” titanium rod was inserted in my femur to prevent breakage. On Jan 1, 2020  I awoke that morning in my private room shivering. A nurse walked in and I asked “What happened? It’s freezing in here. Is this the morgue?” She laughed sheepishly, noting that someone set the thermostat to 63.    

 Lesson 1: It feels better to laugh and make people smile.  

As the months went on, I had high dose radiation to my brain as well as my femur. A year later, between chemo/immunotherapy, surgery and radiation,  I’m thrilled I’ve been able to keep the illness from progressing. My lung tumors have reduced by 75% and I have no head or femur tumors. 

This spring I was able to tend my vegetable garden and do the outside chores that I love doing. I also was able to enjoy my local pool with Elaine, soak in the sun and play my guitar and harmonica.

I also was able to visit my cousins and aunts to brighten the summer. 

Lesson 2: Don’t count the days, make the days count.   

Being a lung cancer survivor,  (one year plus) I also decided to volunteer at Cancer Hope Network as a mentor to people that need help, support and have questions about their illness. It’s very rewarding and I thank my CHN mentor, Pat, RIP.  

Lesson 3: Do what makes you happy. 

To say I’m grateful is an understatement. For me personally 2020 was a win with my current health. Even having to be treated every three weeks with chemo (for life) with scans ever three months, numerous blood test and side effects, I’ve adapted to my reality.  

I did have to go through the sadness of losing my aunt to COVID and my cancer mentor, as 2020 was difficult for so many. 

I hope and pray for my family and friends that we can be reunited again soon with warm hugs and kisses. (not virtual)  

Lesson 4: Cancer didn’t bring me to my knees, it brought me to my feet. 

The post Looking back, looking forward: four lessons from 2020 appeared first on Cancer Hope Network.

“Our first training in Bend was in May 2008,” recalls CHN Executive Director Cynthia Gutierrez Bernstein. “It was one of my first out of state trainings as head of our programs team and we trained a wonderful group of volunteers. Since then, almost 90 St. Charles survivors and caregivers have completed training. They’ve had more than 2,000 visits with more than 1,000 clients. Cancer Hope works with many wonderful organizations across the nation, but St. Charles will always have a special place in my heart.”

Those volunteers provide support for cancer patients and caregivers throughout Central Oregon no matter where they are being treated. Volunteers are trained and supported by the CHN Programs Team, a group of nursing and social work professionals.

“Partnering with Cancer Hope Network helps us connect patients and caregivers who are currently being treated with someone who’s been through a similar experience,” said Wendy Rudy, St. Charles Cancer Center Survivorship & Community Education Coordinator. “They provide support locally, but CHN’s deep bench of volunteers across the nation means support is available for patients facing a rarer cancer. The crossover between our Cancer Center volunteers and those trained as CHN Support Volunteers provides an added depth of support for patients and caregivers.”

But healing doesn’t end when active treatment is complete and adjusting to the new normal of life after cancer can be challenging. Peers for Progress notes that while there is much attention paid to the needs of the recently diagnosed and those currently undergoing treatment for illness, “much less thought is given, however, to the distinctive educational and psychological needs of individuals in the decades following their diagnoses…” (Global Evidence for Peer Support: Humanizing Healthcare, 2014). Our Support Volunteers report that our initial and ongoing volunteer training, combined with professional support from our Programs team and an opportunity to “pay it forward” has helped them find meaning and empowerment in their survivorship.
“Cancer survivors, in general, have a great deal of knowledge about their disease and the post-surgical concerns and the rehab issues their patients likely will face,” says longtime Support Volunteer Jeff Scott. “Sometimes it’s hard to see the pain and suffering others are enduring but there is much personal satisfaction in knowing you’ve made a difference in someone’s life.”

“Being a CHN volunteer has helped me find some purpose and meaning, not in spite of, but because of my cancer experience,” agrees Support Volunteer Marci Floski. “I think others might want to consider volunteering with CHN to have this same experience. A cancer diagnosis and all that comes with it, can be daunting. Being a volunteer reminds us that none of us suffers alone. It’s a powerful source of connection and can bring a sense of value to the difficulties one has gone through. It is proof that we each have much to give, even though it may feel that life has taken so much away.”

CHN and St. Charles Cancer Center will hold their next training session this fall. Want to learn more about becoming a volunteer? Join us for an informational luncheon Friday, August 23 at St. Charles Cancer Center or start your application HERE.

Contact Rachel DiQuattro, CHN Director of Programs for additional information – 908.879.4039 ex 118 or rdiquattro (at) cancerhopenetwork.org 

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