Multiple Myeloma Support

Multiple Myeloma Support

Finding Support and Inspiration: Navigating the Journey with Multiple Myeloma

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When 69-year-old Keith Guernsey from Gainesville, GA, received the diagnosis of multiple myeloma, it was a devastating shock. Still recovering from prostate cancer surgery, he had believed that the worst was behind him. However, blood tests related to his previous cancer revealed the unthinkable – Guernsey was now facing a new, treatable but incurable, cancer diagnosis. His wife became his sole caregiver, as the rest of his family was scattered.

In search of support and guidance, Guernsey turned to online support groups, where he found solace in connecting with individuals from all around the country who were at different stages of multiple myeloma. Among them was a woman from California whose stage IV diagnosis had initially given her only six months to live. Miraculously, she has been in remission for over 20 years, becoming a beacon of hope for Guernsey and countless others. The online support group provided an invaluable network of comfort and encouragement during challenging times.

Unearthing a Wealth of Resources

Multiple myeloma, although a rare cancer, has a wealth of resources available to support those affected by it. Your care team should be your first point of contact, advises Dr. Jason Valent, a myeloma specialist at Cleveland Clinic. Alongside myeloma specialists, palliative care experts can help manage pain, while psychologists and psychiatrists can assist in coping with the emotional burden of a diagnosis.

Speaking about the importance of emotional wellbeing, Dr. Valent emphasizes that the emotional pain experienced by patients can often be just as debilitating, if not more so, than the physical pain. Michelle O’Hare, an oncology nurse at Memorial Sloan Kettering Cancer Center, notes that those in need of additional support can reach out to social workers who can facilitate transportation assistance and other forms of aid. For patients requiring home nursing care, a case manager can prove invaluable. Support groups, both online and in-person, provide opportunities for connection and understanding.

O’Hare highlights the convenience of the internet in finding multiple myeloma support groups. Simply googling the term can offer a plethora of group options. Several online organizations, including Myeloma Crowd by Healthtree, Multiple Myeloma Research Foundation, International Myeloma Society, and the Leukemia & Lymphoma Society (LLS), offer resources tailored to support individuals with myeloma. LLS, for example, not only provides patient resources and support groups but also offers financial assistance for copays.

Moreover, certain organizations connect patients with individual mentors or coaches. Myeloma Coach by Healthtree, for instance, pairs myeloma patients or caregivers with others who can provide guidance and support, helping navigate financial aid and other online resources.

Discovering What Works for You

When weighing the various support options available, it is crucial to stay true to oneself, suggests Dr. Urvi Shah, a myeloma specialist at Memorial Sloan Kettering Cancer Center. Different individuals require different forms of support, and understanding your own personality can guide your choices. Some find solace in support groups, appreciating the knowledge and insights shared by others that help reduce stress and anxiety. For others, however, an abundance of information can have the opposite effect. Ultimately, knowing oneself can make it easier to decide whether and to whom to reach out for support.

Amy Pappas of Cleveland, OH, discovered she had multiple myeloma at the age of 45 when intense back pain led her to consult a spine specialist. She learned that the cancer had caused fractures in her spine as well as affected her ribs, pelvis, and skull. Instead of online groups, Pappas relied on her close network of friends and family for support during her treatment. Distractions, in the form of activities and socializing, played a crucial role in her coping mechanisms. Pappas found solace in inviting friends over during her most challenging times, asking them to distract her from her illness.

Additionally, Pappas took advantage of the yoga classes offered by Cleveland Clinic specifically tailored to individuals with any type of cancer. The small, relaxed sessions included people from all stages of their cancer journey, fostering a sense of camaraderie among participants. The unique setting provided Pappas with an outlet different from a regular yoga studio, allowing her to feel good and connected amidst the challenges she faced.

Paying it Forward and Embracing Hope

Now in his second year of remission, Keith Guernsey is feeling as good as he did when he was only 28, playing hockey. His online support group connections remain strong, and he still holds regular Zoom calls with those he met during his journey. Drawing from his own experiences, Guernsey has taken on the role of a myeloma coach, offering guidance and support to others facing the challenges he has overcome. Although he may not be a doctor, his empathy and shared experiences provide hope and inspiration to his fellow myeloma patients.

In the face of a daunting diagnosis like multiple myeloma, finding support and inspiration becomes paramount to navigate the journey. Whether through online groups or a close-knit circle of friends and family, seeking guidance and connection can make all the difference. The array of resources available provides a multitude of options, allowing each individual to find their own unique path towards healing and hope.

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