Scroll to READ
"It’s Our Story, Too.” How the Made of More Initiative Is Supporting Patients and Caregivers Impacted by Head and Neck Cancer
Subheading style here
When Allison pledged to care for her husband Sean around the clock for 100 days after he received a bone marrow transplant, she thought it was as challenging as life could get. But just three years after Sean’s initial diagnosis in 2011 with Fanconi anemia, a rare genetic disease that can lead to bone marrow failure and a variety of cancers, the high school sweethearts faced a new challenge.
Did you know?
frequently diagnosed cancer in women, and endometrial cancer (which accounts for 90% of uterine cancers) is one of the few cancers where both diagnoses and death rates are increasing in the U.S.
Uterine cancer is the fourth most
Qelbree is the first 2-bead Microtrol Technology delivery of nonstimulant viloxazine for 24-hour patient exposure.
Qelbree shows no evidence of abuse potential –minimizing risk of treatment abuse, misuse or diversion.
Adolescents 12 to 17
years of age
In the study of adolescents 12 to 17 years of age, ADHD symptom score reductions were statistically significant for the 400mg dose, beginning at week 2.
Adults 18 to 65
years of age
In the flexible-dose study of adults 18 to 65 years of age, ADHD symptom score reductions were statistically significant in the Qelbree patients, beginning at week 2.
Now, in addition to sharing her story through the Made of More initiative, Allison also reaches other caregivers through her podcast. "Caregiving can be a blessing, that's true,” said Allison on an episode of her podcast In Sickness, “and caregiving is really hard. Really hard. And exhausting. And anxiety-producing. And early on I realized that no one was really talking about that part of it.”
The result of her realization is The Negative Space, which began as a blog that followed her journey as a caregiver and is now a nonprofit whose mission is to change the way caregivers are seen and supported. She facilitates virtual support groups, provides one-on-one support, shares social media content, and speaks at conferences. Her podcast In Sickness also tackles the realities of being a caregiver while offering support and advice to other caregivers who share the reality of a loved one who needs constant care.
Her realization has had far-reaching effects. Through The Negative Space – a reference to what Allison says it feels like being a huge part of the picture without being acknowledged, like the negative space in art – Allison discovered that when she was transparent with others about what she and her family needed, more people were willing to lend a hand.
"Openness about struggles has been a huge part of having such a strong support system," she says. “When friends and family don’t know what we’re going through, they are less likely to help.”
Know your body
Be an advocate for yourself and other women
How it works
Sean had been diagnosed with head and neck cancer (HNC) – a term that broadly refers to tumors that occur in different areas of the head and neck including the mouth, lips, tongue, nasal cavity, larynx (voice box), throat, sinuses, and lymph nodes – and required a surgery that would remove part of his tongue. At the age of 37, Sean would have to relearn how to talk, swallow, and eat. For Allison, her journey as a caregiver wasn’t nearing an end: it was facing a new beginning. Now, Allison is sharing her story through Made of More, an initiative that supports and advocates for the unique HNC community and reminds those who experience HNC that they are more than just their disease – they are part of a broader community.
For the last decade, Allison has been Sean’s primary caregiver as he has battled HNC and multiple other cancers. While Allison focused on caring for and being a partner to Sean as they raised their daughter, she began to recognize that many caregivers in similar positions may feel overlooked and unsupported. Allison began writing about her experiences, both for personally therapeutic reasons and as a response to caregiver resources she saw that sugar-coated the realities many caregivers face.
Recognizing and voicing below the belt symptoms may help end the stigma around endometrial cancer.
Find the support you need at MadeofMore.com
Visit SpotHerforEC.com for Resources
Sponsored by Made of More
Sponsored by Made of More
Environmental Social Governance (ESG) Milestones
Currently 46% diverse executive management team.
Contributed >$9.5 million to charitable organizations.
Decreased Total Recordable Injuries by 21%.
Scored a Scored a 90 out of 100 on Human Rights Commitment.
Please revisit on a desktop device!
This experience is not yet optimized for your mobile screen.
®
Concomitant administration of sensitive CYP1A2 substrates or CYP1A2 substrates with a narrow therapeutic range
QBE.2023-0307
Now, in addition to sharing her story through the Made of More initiative, Allison also reaches other caregivers through her podcast. "Caregiving can be a blessing, that's true,” said Allison on an episode of her podcast In Sickness, “and caregiving is really hard. Really hard. And exhausting. And anxiety-producing. And early on I realized that no one was really talking about that part of it.”
The result of her realization is The Negative Space, which began as a blog that followed her journey as a caregiver and is now a nonprofit whose mission is to change the way caregivers are seen and supported. She facilitates virtual support groups, provides one-on-one support, shares social media content, and speaks at conferences. Her podcast In Sickness also tackles the realities of being a caregiver while offering support and advice to other caregivers who share the reality of a loved one who needs constant care.
Her realization has had far-reaching effects. Through The Negative Space – a reference to what Allison says it feels like being a huge part of the picture without being acknowledged, like the negative space in art – Allison discovered that when she was transparent with others about what she and her family needed, more people were willing to lend a hand.
"Openness about struggles has been a huge part of having such a strong support system," she says. “When friends and family don’t know what we’re going through, they are less likely to help.”
Meet Allison
"Caregiving is a blessing, and I’m so glad I get to do this"
Made of More
The Made of More initiative was created by the Head and Neck Cancer Alliance (HNCA), Support for People with Oral and Head and Neck Cancer (SPOHNC), Thyroid, Head and Neck Cancer (THANC) Foundation, CancerCare, and Eisai Inc., to highlight the resilience of those like Allison and Sean who are impacted by HNC without shying away from its challenges. Whether a loved one is just beginning treatment or is a survivor, Made of More is a place to find personal accounts of caregivers and survivors, as well as useful resources and information to help others navigate their own experiences with HNC.
"People often think that when you're done with your treatment, you're fine," says Allison. “They don't think, ‘Oh, there are some issues that you may have to deal with forever.’ So, I think it's important to have people who get it and have been there to learn from.”
Resources for Those Impacted by HNC
As Allison can attest, a caregiver’s job is rarely easy. Some of the challenges can include communicating with your loved one’s multidisciplinary care team, as well as talking with family, friends and coworkers about your situation. Made of More offers a helpful guide to navigating these at-times-difficult conversations, providing tips and advice from those who’ve been through what you’re going through.
“It truly takes a team to help someone with head and neck cancer get through treatment and rehabilitation,” says Jennifer L., a Nurse Navigator who helps coordinate care for her patients. Jennifer acknowledges how crucial caregivers are to achieving the best outcomes in treatment. “Caregivers deserve a lot of support and appreciation because it’s very challenging. There are support groups specifically for caregivers, and I highly recommend caregivers connect with someone they can have peer support with or a mentor.”
Allison also stresses that caregivers too often sacrifice their own wellbeing for the sake of their loved one and should remember their own physical and emotional health are important, too. She believes it’s crucial to take care of oneself, not only to provide the best care for a loved one, but also because caregivers are worthy of health and wellness. Allowing room to be who one needs to be depending on the situation and learning how to communicate that to others is an important skill that can really help.
“Sometimes I want people to know about my role as a caregiver so they can be flexible or understand why I’m going to miss that meeting,” Allison explains, “and other times I just want to be Allison, the person who does this job, and I don’t want you to ask about that part of my life right now because I’m trying for a moment not to think about it.”
• Learn more about HNC
• Join a support group
• Learn how to have important conversations
• Search for clinical trials
• Find nutrition support and recipes
• Secure assistance with finances and insurance
• Learn how to talk to children about cancer
The Made of More website shares information and resources from advocacy partners that can help patients and caregivers:
#MoreThanHNC
Allison’s caregiver journey is ongoing. Along with caring for Sean and being a mom to her now teenage daughter, Allison works full-time with her nonprofit. Her goal remains deeply entwined with the Made of More initiative: reminding caregivers that they are more than just someone who provides care. Even though caregivers may feel that the focus should be on the person with cancer and on acknowledging that what they're going through is difficult, it's also important to acknowledge the caregiver role and the effort it takes.
"We're a huge part of the story too,” says Allison. “This is hard, and we're allowed to say that it's hard.”
Scroll to READ
“It’s Our Story, Too.” How the Made of More Initiative Is Supporting Patients and Caregivers Impacted by Head and Neck Cancer
Sponsored by Made of More
Find the support you need at MadeofMore.com
All opinions Allison expresses through The Negative Space and In Sickness podcast are hers alone.
Made of More
The Made of More initiative was created by the Head and Neck Cancer Alliance (HNCA), Support for People with Oral and Head and Neck Cancer (SPOHNC), Thyroid, Head and Neck Cancer (THANC) Foundation, CancerCare, and Eisai Inc., to highlight the resilience of those like Allison and Sean who are impacted by HNC without shying away from its challenges. Whether a loved one is just beginning treatment or is a survivor, Made of More is a place to find personal accounts of caregivers and survivors, as well as useful resources and information to help others navigate their own experiences with HNC.
"People often think that when you're done with your treatment, you're fine," says Allison. “They don't think, ‘Oh, there are some issues that you may have to deal with forever.’ So, I think it's important to have people who get it and have been there to learn from.”
As Allison can attest, a caregiver’s job is rarely easy. Some of the challenges can include communicating with your loved one’s multidisciplinary care team, as well as talking with family, friends and coworkers about your situation. Made of More offers a helpful guide to navigating these at-times-difficult conversations, providing tips and advice from those who’ve been through what you’re going through.
“It truly takes a team to help someone with head and neck cancer get through treatment and rehabilitation,” says Jennifer L., a Nurse Navigator who helps coordinate care for her patients. Jennifer acknowledges how crucial caregivers are to achieving the best outcomes in treatment. “Caregivers deserve a lot of support and appreciation because it’s very challenging. There are support groups specifically for caregivers, and I highly recommend caregivers connect with someone they can have peer support with or a mentor.”
Resources for Those Impacted by HNC
Allison also stresses that caregivers too often sacrifice their own wellbeing for the sake of their loved one and should remember their own physical and emotional health are important, too. She believes it’s crucial to take care of oneself, not only to provide the best care for a loved one, but also because caregivers are worthy of health and wellness. Allowing room to be who one needs to be depending on the situation and learning how to communicate that to others is an important skill that can really help.
“Sometimes I want people to know about my role as a caregiver so they can be flexible or understand why I’m going to miss that meeting,” Allison explains, “and other times I just want to be Allison, the person who does this job, and I don’t want you to ask about that part of my life right now because I’m trying for a moment not to think about it.”
Allison’s caregiver journey is ongoing. Along with caring for Sean and being a mom to her now teenage daughter, Allison works full-time with her nonprofit. Her goal remains deeply entwined with the Made of More initiative: reminding caregivers that they are more than just someone who provides care. Even though caregivers may feel that the focus should be on the person with cancer and on acknowledging that what they're going through is difficult, it's also important to acknowledge the caregiver role and the effort it takes.
"We're a huge part of the story too,” says Allison. “This is hard, and we're allowed to say that it's hard.”
#MoreThanHNC