Get support for multiple myeloma

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Keith Guernsey, 69, from Gainesville, Georgia, discovered for the first time that he had Multiple myeloma, This is a complete shock.He just passed Prostate cancer Surgery and looking forward to leaving cancer behind. He did not notice any other signs of health problems. However, his doctor ordered a blood test related to early cancer, which led to the unimaginable: Guernsey is facing a new disease, this time it can be cured but cannot be cured. Cancer diagnosis.

Guernsey said: “My wife became my only caregiver because my family was scattered.”

He took advantage of the online support group, where he met people from all over the country Staging of multiple myeloma. He found special inspiration in a California woman who was initially diagnosed with stage IV. Multiple myeloma.

Guernsey said: “I was told to arrange her affairs-she has six months to live.” “She has been there. ease 20 years. Therefore, she gave me and others great hope. This is a very supportive group. “

Find resources

Multiple myeloma is rare cancer, There are many resources available to support those who own it. Dr. Jason Valent, a myeloma specialist at the Cleveland Clinic, said a good starting point is your own care team.He said that in addition to myeloma specialists, the nursing team also includes Palliative care Expert assistance pain And psychologists and psychiatrists to help you deal with the diagnosis.

Valent said: “For patients, this is a very important thing.” “Emotional pain is often just as serious or even more serious. [than the physical pain]. “

Michelle O’Hare, a cancer nurse at the Memorial Sloan Kettering Cancer Center’s myeloma patient, said that those who need more support can talk to social workers, who can help You provide transportation assistance and other assistance. If you need home care, a case manager may be helpful. She also suggested a support group that might be face-to-face or online.

O’Hare said: “I always tell patients that they can use Google in multiple myeloma support groups and get a complete list.” “This is the charm of the Internet.”

carry on

Online organizations that provide assistance to patients with myeloma include:

  • Myeloma population caused by Healthtree
  • Multiple Myeloma Research Foundation
  • International Myeloma Society
  • Leukemia and Lymphoma Society (LLS)

“LLS can not only provide patient resources for support groups, but also provide financial assistance for: Copay“, Valent said.

In addition to support groups, some organizations can connect you with one-on-one mentors or coaches. For example, Healthtree’s Myeloma Coach coaches are myeloma patients or caregivers who keep in touch with you, listen and provide guidance on financial assistance, online resources, etc.

Find your own way

When deciding on your many support options, Dr. Urvi Shah, a myeloma specialist at Memorial Sloan Kettering Cancer Center, said that you should be true to yourself.

Shah said: “Patients should carefully choose what suits them.” “For some people, support groups will help. They want to know what will happen in the future and it will reduce pressure. For others, too much listening can increase stress. anxiety. Knowing your personality type can help you decide whether you want to be in contact with others. “

carry on

Amy Pappas of Cleveland, Ohio, discovered that she had multiple myeloma at the age of 45 after severe back pain made her severely ill. spine expert. It turns out that cancer fractured her spine. It was also in her ribs, pelvis and skull. In order to get support, she does not rely on relatives and friends, but on a network of close friends and family.

“Even though I do feel sick [at times during treatment], I keep walking. “Papas said. “This is my character: trying to feel normal while I am getting better.” Distraction is huge for me. I can say to my friend: “Hey, I think it sucks, but come here to distract me.”

She also uses it once or twice a week Yoga The Cleveland Clinic offers courses for people with all cancer types. These courses are easy and small, and include people at all stages of the cancer journey.

She said: “It really feels good to be with those people.” “It’s a good way out, and it’s different from being in a regular yoga studio.”

Coming soon

Guernsey is now in its second year of remission. He said he has been playing hockey since he was 28 and he has always felt good. He still regularly conducts Zoom calls with people he knows through the online support group. He has also served as a myeloma coach for others who have experienced the same experience as him.

Guernsey said: “I am not a doctor, so I don’t pretend to be myself.” “But I share my experience and try to let them know what works for me. It can also work for them.”

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