The gift of caregiving 

Cancer caregiving is a powerful gift, an opportunity to serve a loved one facing one of life’s great challenges. It’s inspiring and hopeful to help a loved one through the storm of cancer. Navigating appointments and making sure medications are taken on time and your support community is informed can be empowering (You’re doing something that’s tangible and helpful!). But it can also be terrifying (What if my loved one dies?) and lonely (I’m keeping a brave face because I don’t want my loved one to know how worried I am.) Caring for a loved one who’s been diagnosed with cancer can also be emotionally draining and professionally challenging (missing work! maintaining health insurance!). 

Find organizations that provide resources for cancer patients and their loved ones.

The challenges of cancer caregiving 

In the best of circumstances, cancer caregiving is isolating and scary, an emotion packed journey. But cancer caregiving doesn’t come to the best of circumstances. It is indiscriminate in who or when it hits. (WATCH: Caring for the Caregiver: Seeking Support Through Cancer Hope Network) 

Life doesn’t magically become perfect when the doctor gives a diagnosis and longstanding family dynamics aren’t always smoothed with the addition of heartache. No matter how well meant, compliments and encouragement (“You’re so strong.” “They’re so lucky to have you.”) can’t keep your eyes open when you’re fighting exhaustion after your loved one had a rough night due to side effects.  

Request a free & confidential caregiver support match.

Cancer caregivers sometimes fight and care in quick succession. CHN Support Volunteer Alyssa had just finished her own treatment for head and neck cancer when both parents were diagnosed with two different cancers. Caregiver volunteer Kaci supported her husband through his four-year fight with glioblastoma. Two months after his death, as her three small children began recovering, her mother who was diagnosed with breast cancer.  

CHN’s peer mentors understand those competing emotions and contrasting realities. They are here to listen. They’re here to provide guidance, resources, and hope. They will remind you that while this may be your first time serving as a cancer caregiver, you are not the first. (Meet Pat, a caregiver helping others care for themselves.) 

 (Learn more about serving as a cancer caregiver mentor)

How caregiver volunteers can help 

Serving as a peer mentor with Cancer Hope Network is a convenient, meaningful way to give back. For caregivers living with immunocompromised survivors, the fact that training happens online and matches are made by telephone make it an ideal virtual volunteer opportunity.  

Support Volunteers help fellow caregivers learn the new language of oncology and deal with the wide range of emotions their loved one is feeling (READ: Reasons Behind the Rage from our community of survivors and caregivers). 

Volunteers, along with our Programs Team, can help new caregivers find help and resources  (CanCare offers social worker led case managment, Cancer Support Community offers tips for getting started as a caregiver, the American Cancer Society’s Caregiver Resource Guide includes a wide variety of resources – including information on respite care) 

More than anything, Cancer Hope Network mentor volunteers are great listeners. They’ll help navigate the challenges of caregiving (for many folks, life before cancer didn’t involve quite so many ports or drains, an evolving number of prescriptions or quite so much puke) and provide the calm confidence of only a seasoned caregiver can.  

Call 877-HOPENET (877.467.3638) to connect with a caregiver volunteer, or to start the process to become a volunteer.

1. AARP, National Alliance for Caregiving. (2020). 2020 report caregiving in the U.S. caregiving.org. Retrieved 2022, from https://www.caregiving.org/wp-content/uploads/2020/08/AARP1316_ExecSum_CaregivingintheUS_508.pdf  

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According to The National Cancer Institute, “There is strong evidence that higher levels of physical activity are linked to lower risk of several types of cancer.”¹ Fitness can lower your risk of cancers like, Bladder, Breast, Colon, Endometrial, Esophageal, Kidney and Stomach. For more information the Physical Activity and Cancer Fact Sheet is a great source on how activities effect the individual cancers listed above.

Going through cancer treatment can wreak havoc on your body and mind. While fitness is definitely not a cure-all, it can help alleviate many symptoms. There is “strong evidence that moderate-intensity aerobic training and/or resistance exercise during and after cancer treatment can reduce anxiety, depressive symptoms, and fatigue and improve health-related quality of life and physical function”¹ Another great tip to help relieve symptoms like anxiety without having to exert too much at times it feels like you can barely move is going for a walk outside, “My tip for staying healthy… get outside for at least 15 minutes every single day. It’s good for the body, mind, and soul” (Blakey, 2020).

As your journey moves into survivorship, the importance of physical activity does not lessen. Fitness can help you get back to feeling like yourself again after treatment. “Before cancer I was quite fit. I would do exercise in preparation for various events such as cross-country skiing or climbing a mountain.  But after cancer, I became determined to exercise for life…” (Mary, 2017).

One person who is embracing fitness and doing so for a great cause is Lindsay Tasher, Cancer Hope Network Board Member who is raising money for CHN with a virtual 5K in honor of Elizabeth Ann Mitchell McCarthy. CLICK HERE to learn more or to register for the event.

1. Physical Activity and Cancer Fact Sheet. (2020, February 10). National Cancer Institute. https://www.cancer.gov/about-cancer/causes-prevention/risk/obesity/physical-activity-fact-sheet

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CHN is working to raise our profile on LinkedIn. “With over 190 million active members in the U.S. and two profiles created per second, LinkedIn is the largest professional network worldwide. Tapping into this community could help your nonprofit manage its image and develop its professional network.” 1 

LinkedIn helps people find our services, is an opportunity to recruit new volunteers and, of course, is an opportunity for our volunteers of all types to celebrate their work to make sure no one faces cancer alone.  

Here’s how you can help:  

• Follow us – Mashing that “Follow” button is a great way to stay up to date with what’s happening in the CHN community, including volunteer profiles (Ruth, Bridget) and articles about various services we’re offering. (CURE , Speaking Out) 
  

• Add Cancer Hope Network to the Volunteer portion of your personal profile
  You’re doing the work – it’s time to let everyone know! Adding your volunteer experience to your LinkedIn profile is a way to let people know what’s important to you or to gently encourage fellow survivors to volunteer.
  

• Spread the word –  
  Share our Golf Classic or other fundraisers with your colleagues and connections. Or introduce someone to our free and confidential peer mentors.  
  

However you choose to interact, we hope you’ll join us as part of the Cancer Hope Network LinkedIn community. Follow us on LinkedIn and link with hope! 

https://www.springly.org/en-us/blog/linkedin-for-nonprofits-hidden-potential/ 

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This Volunteer Appreciation Week, we celebrate the everyday heroism of our amazing, incredible – dare we say heroic?!? – Support Volunteers. They don’t have lassos or shields or Vibranium anything – but they do have phones.

And those phones have power. In the hands of a trained survivor or caregiver, some bits of metal and plastic become a superheroes’ weapon against despair. Their super power? HOPE! Each time they accept a new match, send a call or a text, they’re saving, not a city, but someone’s calm.

No matter what their tools, the throughline of every hero’s story is courage. Courage in the face of evil, darkness or difficult times.

Our volunteers share that courage with clients like Lucille** who wrote to “Jane is wonderful!! A perfect match for me. I was really reluctant to do this, I felt I was going ok and didn’t really need any support (stubborn). But when I  started talking to her it was as if I already knew her!! God bless her for what she has gone thru and be so willing to support me and listen…very humbling  I hope to return the service to someone else, one day.”

Or Heloise** who thanked her volunteer directly. “She told me that I always lift her spirits and she feels “healing” after talking with me and that she thought I was put on this earth to help.”

One volunteer, now retired, reached out to connect when their cancer returned. “As I former volunteer, I know how the service works. Now, as a client, I was humbled by the compassion of those I spoke with, both staff and volunteer.”

This year, the theme for Volunteer Appreciation Week is empathy, the ability to understand and share the feelings of another. It’s particularly fitting, for our volunteers, as they listen and mentor patients and caregivers across the country.

Cancer can bring out the best in our personal networks, as friends rally and family host fundraisers and bring dinner. But it can also be isolating, as friends and family wait to be asked for help or struggle to find the right words to say. (Looking for tips? Check out “What do I say? Keeping your foot out of your mouth when a loved one is facing cancer.”)

But in that isolation, nearly 500 CHN Support Volunteers grab their phones, marshal their courage and live out the definition of empathy, reducing anxiety, inspiring courage and bringing out the best of humanity. “Mark was able to outline what’s coming up for me and dampen my anxiety.”

“To say that we appreciate our volunteers is an understatement. Put bluntly, Cancer Hope Network wouldn’t exist without the hundreds of Support Volunteers who show up when life is dark. Each year, in thousands of phone calls, text message and emails, they’re demonstrating heroic empathy. Our volunteers aren’t flashy,” said CHN Director of Programs Samantha Schrager. “They aren’t looking for awards or recognition – in fact, many of them don’t even recognize the noble work their doing as anything out of the ordinary. But in that ordinariness is hope.”

Volunteer Appreciation Week comes around once a year – but each and every day, we are thankful for the superheroes who share their compassion, their strength and courage. And, you know, their tools.

Thank you.

**Names have been changed to protect privacy.

The post Heroes of Hope: Cancer Hope Network celebrates Volunteer Appreciation Week appeared first on Cancer Hope Network.

Our new class of volunteers were born to help others. There is a three-time caregiver and powerhouse mother, sister, and daughter. One is a Pediatric Nurse a mother and was a caregiver to her husband, she was also a former client. We are joined by a tremendously strong and smart 19-year-old and a Junior in college, who was a caregiver to her mother, she is also fluent in Spanish. Another young caregiver supported her friend at the age of 14 and is excited to help others while raising awareness in honor of her friend’s memory. One mentor had the unique experience of being a caregiver throughout the pandemic as her husband was diagnosed in September 2020 while another was not only a caregiver to her parents but a survivor herself.    

Rounding out the new class, we have a survivor volunteer that brings the unique perspective of a cancer journey that began at age 13 and is on her way to becoming an oncology nurse. One is a survivor and past CHN client who cared for her mother through Alzheimer’s. Another survivor is interested in becoming an end-of-life doula and lastly, but not least we have cancer survivor brought to us by Stanford Health. 

We are deeply grateful to these strong, caring women for their willingness to help other navigate life and cancer:  

Alyssa- Head & Neck: Tongue, Caregiver 

Annabel– Caregiver 

Brooke- Caregiver 

Barbra- Inflammatory Breast Cancer 

Carolyn- Caregiver 

Erika- Caregiver 

Kaci– Caregiver  

Jeanne – Intraductal Breast Cancer 

Madison- Acute Lymphoblastic Leukemia (ALL) 

Martha (Marty)- Cervical, stage 1 b2 

The group joins our team of nearly 500 Support Volunteers already committed to providing peer mentoring for cancer patients and the people who love them.  To connect with these, or one of our other volunteers, please call our Programs Team at 877-HOPENET (877.467.3638) or visit cancerhopenetwork.org. 

The post Meet the New Class of Support Volunteers: Caregivers Need Support Too  appeared first on Cancer Hope Network.

It’s been a long time since 2013 when Support Volunteer Teres was busy making plans. Her son was graduating college. After years of dreaming, discussing and planning, she and her husband were preparing to move their family to South Carolina.

Then, she was diagnosed with colorectal cancer.

“The doctor said ‘you have a tumor,’ Teres recalls. “That just shattered me. I wasn’t feeling ill.  Other than giving birth, I’d never been hospitalized. Suddenly, I’m getting radiation and a six-week course of 5FU chemo in a pump I carried with me 24-hours a day. We were discussing my ostomy and all that would entail.”

Like many patients, she began her treatment believing she was mentally and physically prepared for the side effects she’d discussed with her medical team. The reality was much more difficult than she’d expected.

“All I would do was cry. I got really depressed and I remember saying to my husband and my kids, ‘I’m not going to get through this, you’re going to have to put me away somewhere.” It was at that point Teres called Cancer Hope Network.

“I loved my cancer support group, but they couldn’t relate to me specifically on colorectal cancer and having an ostomy, especially as a woman. When I called CHN, I was matched with someone in my age bracket, who had had the same treatment and was five years out.”

That Support Volunteer shared a perspective Teres desperately needed. “I’d never met anyone or talked to anyone who had an ostomy. I didn’t know if it was a handicap where I wouldn’t be able to do anything. I had no idea how it would look for a young person who is married. It was so nice for her to say ‘This is what you can expect’ because the unknown is so scary.”

“What I really love about Cancer Hope is the detailed matching. Yes, it’s important to talk to people about cancer who’ve walked it – but when you look a little closer and find someone with a shared diagnosis or treatment, you can really talk to someone who has walked the same walk. It’s hard to have a conversation with someone who has never had this ostomy experience. It’s been really great to talk to other ladies and share my story. I can reassure them that their lives are not going to stop.”

Teres has always been a helper, volunteering for a variety of community service organizations through the years. But her diagnosis marked a turning point. “My desire to provide support to others has become heightened since I was sick. I think about all the support and love that I received, which was wonderful. Even strangers stepped up to let me know I was not alone. People I’d never met would send me text messages, I have a box of cards from people who would send me cards to say they were thinking of me. I know how important it is to make sure that you’re giving support.” 

During treatment, Teres was surrounded by a loving family, her “rock solid” husband and “lots of prayer warriors who were constantly encouraging me.” An independent person, more accustomed to managing responsibilities and keeping a tight grip on the reins, it was a big adjustment. “I had to humble myself at that time and rely on others to help me through the process.”

Today, she has embraced her “new normal,” paying forward the information and courage that was shared with her. Her husband launched his own trucking company in 2018. Her youngest son joined the Army in 2019 and in 2020, her oldest son welcomed a daughter – and Teres’ first grand child.

Settled in South Carolina, Teres was still seeing her New Jersey-based care team. In March 2020 she was adjusting to life as an empty nester when the pandemic hit. Teres, in the middle of a visit filled with doctor’s appointments and awaiting a colonoscopy was stuck in place – unable to leave New Jersey. Her husband, a long-distance trucker, was on the road. A self-described news junkie, she was glued to the television, watching as another “new normal” began.

Her own experience heightened her compassion for patients undergoing their first rounds of diagnosis and treatment. “I have a lot of family in the medical field and was hearing the pain they were going through. I was lucky. I’m physically well and doing ok. My doctors were able to have phone conferences with me. I’d get really emotional thinking about all the people who truly needed to physically be at their doctor’s offices.”

“I remember talking to some matches during that time – the overwhelming struggles that they were facing trying to get to treatment. People weren’t allowed to accompany them to appointments and visits. You’re already being sick and now you don’t have any support.” That empathy further strengthened her commitment to providing support over long distances.

“I had some friends who lost a lot of loved ones during Covid and they couldn’t be a part of funeral arrangements or see people. Whether it was through you guys matching me or other family members and friends who were lonely, I was trying to be a support system while trying to deal with my isolation,” she recalls. “It made me more aware of the present and how grateful and thankful I am that I’ve endured. I’m in my ninth year of being able to say that I’m cancer free. I didn’t get sick. I was able to still be helpful and useful, especially at a critical time when so many people needed help.”

Cancer Hope Network provides free one-on-one emotional support to adult cancer patients and their loved ones by matching them with survivors and caregivers trained as Support Volunteers and supported by a team of healthcare and social work professionals. Each of CHN’s 400+ volunteers is at least one year post-treatment or successfully undergoing maintenance therapies. CHN serves cancer patients in the United States and Canada. To connect with a Support Volunteer who’s had colorectal cancer, an ostomy – or other experience similar to your own, click HERE or call 877.467.3638.

The post Ostomate Power: Living Well After Colorectal Cancer appeared first on Cancer Hope Network.

While medical bills alone can be tremendous, another monstrous cost of treatment is travel expenses, especially when treatment is offered far from home. When my uncle was diagnosed with cancer in 2008, he had to only travel two hours by car from northern NJ to Philadelphia or just over the bridge to NYC, and that got expensive. For those who need to travel farther distances, it can become overwhelming. Luckily there are amazing programs in place to help fix this problem. Unfortunately, people don’t always know the help that’s available. According to Lindsey Kerr the Executive Director of LifeLine Pilots, “Only 5% of those with a need are being served by organizations like ours.”² 

Lifeline Pilots, established the same year as Cancer Hope Network, “has provided no-cost air transportation for financially distressed passengers with medical and humanitarian needs.  Over four decades, volunteer pilots have flown five million nautical miles and more than 8,000 missions with a 100% safety record. Missions are facilitated for babies through senior citizens. LifeLine Pilots’ has also participated in relief efforts for natural disasters by transporting volunteers and supplies to areas of need.  Headquartered in Peoria, Illinois, LLP currently serves patients living in the following 10 states: Ohio, Minnesota, Illinois, Iowa, Michigan, Wisconsin, Missouri, Indiana, Kentucky and Tennessee.”³ (Lifeline Pilots) 

According to the American Hospital Association “[Every year,] 3.6 million people in the U.S. do not obtain medical care due to transportation barriers.”  In fact, transportation is said to be the third leading cause of missing a medical appointment.⁴ 

Another great organization fighting toxicity by providing transportation is PALS which is located Farmingdale, NY. PALS “arranges free flights for medical patients requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially.” (PALS website) One of our amazing CHN Support Volunteers, Rachelle, also volunteers for an organization (Hospitality Homes) that houses patients when they visit the Boston area for treatment. She’s seen PALS help first hand, as a patient that stayed with Rachelle in the past used PALS services. “He had used PALS, and I remember he had good experience with them…they are tremendous programs.”  

“A lack of access to transportation has a significant impact on cancer patients’ decisions with respect to stopping or continuing treatments.”⁵   With the help of these amazing organizations and many other similar, having to travel for cancer treatment, can seem less daunting.   

To learn more about these and other organizations helping patients navigate transportation, please visit https://www.aircarealliance.org/

 
To request support and to be matched with a survivor or caregiver, please visit cancerhopenetwork.org or call us at 877-467-3638 (877-HOPENET).   

1. Financial Toxicity (Financial Distress) and Cancer Treatment (PDQ®)–Patient Version – National Cancer Institute. www.cancer.gov. Published June 29, 2017. https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-pdq

2. Removing a barrier for better healthcare. LifeLine Pilots. Published February 6, 2020. Accessed March 2, 2022. https://lifelinepilots.org/removing-barrier-for-healthcare

3. Removing a barrier for better healthcare. LifeLine Pilots. Published February 6, 2020. Accessed March 2, 2022. https://lifelinepilots.org/removing-barrier-for-healthcare

4. Transportation and the Role of Hospitals Transportation and the Role of Hospitals Social Determinants of Health Series.; 2017. https://www.hpoe.org/Reports-HPOE/2017/sdoh-transportation-role-of-hospitals.pdf

5. Etminani-Ghasrodashti R, Kan C, Mozaffarian L. Investigating the Role of Transportation Barriers in Cancer Patients’ Decision Making Regarding the Treatment Process. Transportation Research Record: Journal of the Transportation Research Board. Published online February 6, 2021

The post Planes, Trains & Medical Bills: Getting To & From Cancer Treatment  appeared first on Cancer Hope Network.

Our three new cancer survivor and caregiver volunteers come from all over the US, from San Francisco to Wyoming to New Jersey! They also bring with them a vast array of experiences and expertise.  

Our new Support Volunteer from the rolling hills of San Fran, has one of the most welcoming and upbeat personalities and brings a unique skillset as a certified Death Doula trained with Inelda. Over on the east coast we have a former client who was looking for a way to give back. We are also joined by someone who has the distinctive perspective of being both a cancer survivor and a caregiver to his wife.  

• Wayne– Head and Neck: Tongue 
• Rich– Prostate 
• Sarah– Breast with metastasis to liver and lymph nodes

The group joins our team of nearly 500 Support Volunteers already committed to providing peer mentoring for cancer patients and the people who love them.  To connect with these, or one of our other volunteers, please call our Programs Team at 877-HOPENET (877.467.3638) or visit cancerhopenetwork.org. 

The post Meet the New Class of Support Volunteers: East Coast to West Coast  appeared first on Cancer Hope Network.

Melanie’s journey began June 2020 when neck pain and unexpected exhaustion turned into “a billion” doctors, sonograms, x-rays, blood tests and “a biopsy, just in case.” An early bright spot was Merlo, the comfort puppy who came into her life the week she was diagnosed. Supported by friends and family, pandemic guidelines meant she faced the majority of her diagnosis and treatment alone, with loved ones providing rides, but sitting in their cars, unable to join her.  

Her last treatment was February 5, 2021. This February, she is marking her cancerversary  by looking back at “the roughest moments of my life” and celebrating how much things have changed. “I have accomplished so much this year. I’m so grateful for my health. I’m so grateful for the things I’ve been able to do in the past year. It’s important to celebrate the anniversaries – because no one knows what you’ve gone through unless they’ve gone through it themselves.” 

Melanie is a longtime volunteer for several mental health organizations and when treatment was complete, jumped at the chance to provide peer support as a Cancer Hope Network volunteer. “I know that the peer to peer aspect is very important. I feel that there’s a huge stigma around mental health – seeking therapy, a counselor or group meetings isn’t spoken about enough. It’s getting there; there’s been a big change since I started volunteering ten years ago, but I want to be sure I’m practicing what I tell others. If I think others need help, I do too.”  

“I wish I’d been paired with someone who would have told me from day one what to expect. The hair loss, how real the side effects the doctor is reading off the sheet will be.”  Melanie brings an optimistic realism to the matches she serves. “Cancer Hope Network is so crucial. Match visits are bittersweet. It’s nice to help someone else and to be able to talk to someone who’s about to go through it. I’m here to answer questions. It’s also heartbreaking to know what they’re about to go through. I feel like the point of these matches is to be honest. I let people know that it’s going to be ok, but it’s going to be challenging. It’s going to be a journey and there are ways to get through it.”  

She encourages the patients and caregivers she’s matched with to ask for help. “There’s no ‘I’ve got it’ in cancer. It’s ok to ask for help and resources. Don’t feel like you’re being a burden. Your family, your friends, your doctors, nurses and support system – they all want to help. It’s a strength in itself that you’re asking for help.” Faced with the exhaustion and side effects of cancer and chemo, she wasn’t able to do much and felt the loss of control acutely. But she reclaimed measure of her control by asking for help.  

People brought her to treatments and dropped off food (“Very helpful, because there was no way I was cooking!”) and family took shifts staying at her house a week at a time after her chemo (“There was someone to help with the day to day of breakfast and making sure I wasn’t a fall case.”). Others, kept away by the pandemic, provided support and help remotely. “They would text or call to ask how I was doing. The first two months of treatment, everyone was asking how I was doing and it felt ok to talk about it because it was so new. Five months in, I worried that people were tired of me talking about my symptoms. The people who still cared enough to check in were so meaningful. I know they worried about being a burden, but it kept me going.”  

In an experience filled with difficult moments – four hours in an infusion chair, administering immunity boosting injections, mouth sores, bone aches and more – she was particularly fond of folks who checked in to share what was happening unrelated to cancer. “I loved hearing about other people’s lives. Tell me what’s going on with you! It took me out of my own life for a moment.”  

She sees her work as a Support Volunteer providing one on one peer support, is the chance to help people not feel like they’re alone. “I can help them feel validated. Cancer patients are wondering if their experience is normal. Caregivers think they’re going crazy because the person they’re trying to support thinks they’re over reacting.” 

Her best advice – “Try to survive today. Don’t think about tomorrow, don’t think about yesterday. Focus on how you will get through this moment, this symptom, this day. Whatever the hardship, try to celebrate the little wins. Enjoy the good days. Because you have both – take advantage of them. And Listen to what YOU want to do and what is best for yourself. People will want to help, but may not know what’s best for you. Be true to yourself.”  

“My work as a volunteer – and now hosting this fundraiser – helps people not feel isolated or lonely. I’m proud to be able to raise money so Cancer Hope Network has the resources to continue to advocate for people facing cancer and matching them with a volunteer who understands.” 

To be matched with a volunteer, call 877.467.3638 (877-HOPENET) or click HERE.  

LINKS:  
Donate to Melanie’s One Year Cancer Free Fundraiser 

Request a Quotes for Hope

The post Wigs be gone! Hodgkin’s survivor Melanie celebrates her cancerversary as Cancer Hope Network volunteer appeared first on Cancer Hope Network.

Doctors discovered LMP (Low Malignant Potential – “abnormal cells that may become cancer, but usually do not.”) Although her risk was low, 25-year old Gayle began regular follow up with a gynecologic oncologist. That decision may have saved her life. 

Gayle was diagnosed with ovarian cancer a year and a half later. She recalls the surreal feeling of sitting in her office, with her mother on another line, as the doctor gave her the news. Although the doctors did their best to preserve her future ability to have children, Gayle soon found herself a young woman in New York, surrounded by family (both brothers had welcomed daughters only months before) and the growing realization that she might not have a family of her own.  

She had to learn about navigating dating as a survivor. “When do you tell someone? How do I explain my scars? The one from my port is frequently visible. Others, not so much. Some guy said something about my short hair and suddenly, I was feeling all sensitive. I felt like I was always tripping over my words.”  

She was also learning to navigate life as a young professional, who also happened to be a cancer survivor. Options for changing employers were limited – “People at work knew my story. I didn’t have to go through a long explanation if I had to leave for a three-hour doctor appointment” – as were her insurance options – “Before the laws changed, I was afraid to leave my job because of pre-existing conditions.” The ripples of cancer impacted her finances for years.  

“Cancer touches everything. I didn’t have any money because I had cancer. I had additional struggles with my weight because I had cancer. Many of my friends were supportive, but some struggled with my diagnosis. Walking through the tampon aisle at the drugstore could put me in tears.” 

“I was living with my best friend at the time and she was supportive – but it was really challenging. We were so young and I was facing a cancer that usually impacts older women. I went to a support group and all the women were twice my age. For some of my friends, this was the first really serious thing they’d had to confront.”  

But as many patients learn, cancer doesn’t always end when the final suture is removed, or the bell is rung at the end of chemotherapy. Do a Google search for “long term effects of cancer” and you’ll find more than 850 million results. “Side effects of medically induced menopause?” More than 6 million. “Long term consequences of cancer treatment?” You’ll find 8 billion results. There are literally more articles and pieces of information about the ongoing impact of cancer than there are people in the world. 

Gayle’s initial diagnosis and treatment were soon followed by the ongoing side-effects and health complications faced by so many young adults fighting cancer: colitis, followed by surgery to “unstick” her colon and uterus in 1999. In July 2001, Gayle stopped attending therapy, “I need to see what life is like post cancer, post-therapy.” Scheduled for same-day surgery to remove another tumor, she woke up with massive abdominal bandages and was there for a week. She missed ten more weeks of work after that surgery as she experience another a severe colitis flare-up. They were unsure if the cancer was back but fortunately just another LMP.  And then September 11^th arrived in the city she loved.  

Through the years, she’s faced colitis flare-ups became so severe that she had her entire colon removed, along with her uterus (as it seemed superfluous at this point)  Yet again they found another LMP, which she would not have known it was there if she didn’t have the surgery.  Fortunately, she has not has another LMP since then.  She was diagnosed with seronegative arthritis due to the colitis, followed by osteo arthritis brought on because she’d gone through menopause so early in life.  

Gayle counts herself fortunate – she was living in a big city, with access to extraordinary resources (like SHARE Cancer Support and “an awesome group” for young adult cancer survivors at Sloan Kettering.) She had great support from family and friends who rallied through 9 surgeries over the years. “My employer was very supportive, gave me a computer at home (this was before people had computer’s at home), a cot in the office, money for a hat with subway tokens taped into the card (aka pre metrocard).” Others marched and supported her fundraising efforts for the SHARE walk. She “didn’t have to worry about getting pregnant when I didn’t want to,” met “some great people” and was soon helping others as a Support Volunteer for Cancer Hope Network. (Then known as CHEMOcare.) 

She encourages patients and survivors to prioritize their own well-being. “This is the time for you to be selfish. Do not try to be a hero. Women especially need to hear that message.”  She’s helping friends now going through traditional menopause, “I’ve been there. Done that.” And she encourages the friends and families looking for ways to support a newly diagnosed loved one to LISTEN and THINK. “Be sensitive to what you’re saying means for that person. I had people forgetting I couldn’t have kids or sending tampon memes. They’d tell me it was because I was so healthy, they just forgot. But that didn’t help.”  

To connect with Gayle or another Support Volunteer mentor or to learn more about sharing your own experiences as a cancer survivor or caregiver, contact Cancer Hope Network – 877-HOPENET (877.467.3638) or visit cancerhopenetwork.org. 

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