When 69-year-old Keith Guernsey from Gainesville, GA, first discovered he had a number of myeloma, it was an entire shock. He’d simply gotten previous prostate most cancers surgical procedure and was trying ahead to placing most cancers behind him. He hadn’t observed any indicators of one other well being drawback. However, blood checks his physician ordered associated to the sooner most cancers led to the unthinkable: Guernsey was dealing with a brand new, and this time treatable however incurable, most cancers prognosis.
“My spouse grew to become my sole caregiver as a result of the remainder of my household is scattered,” Guernsey says.
He took benefit of on-line assist teams, the place he met individuals throughout the nation in any respect completely different levels of a number of myeloma. He discovered particular inspiration in a lady in California whose preliminary prognosis was stage IV a number of myeloma.
“She was informed to get her affairs so as — that she had 6 months to dwell,” Guernsey stated. “She’s been in remission for 20 years. So, she offers me and others lots of hope. It’s a really supportive group.”
Whereas a number of myeloma is a uncommon most cancers, there are many sources obtainable to assist individuals who have it. place to begin is your personal care staff, says Jason Valent, MD, a myeloma specialist at Cleveland Clinic. Along with specialists in myeloma, he says care groups embody palliative care specialists to assist with the ache in addition to psychologists and psychiatrists that can assist you deal with the prognosis.
“That is a vital factor for sufferers to have entry to,” Valent says. “The emotional ache is oftentimes simply as dangerous or much more extreme [than the physical pain].”
Michelle O’Hare, RN, an oncology nurse who cares for myeloma sufferers at Memorial Sloan Kettering Most cancers Middle, says those that want further assist can discuss to a social employee, who can join you with transportation assist and different help. A case supervisor might be useful for those who’re in want of nursing care at residence. She additionally recommends assist teams, which can be in-person or on-line.
“I at all times inform sufferers that they will google a number of myeloma assist teams and get an entire checklist,” O’Hare stated. “That is the great thing about the web.”
On-line organizations that supply assist for individuals with myeloma embody:
- Myeloma Crowd by Healthtree
- A number of Myeloma Analysis Basis
- Worldwide Myeloma Society
- Leukemia & Lymphoma Society (LLS)
“LLS can present not solely affected person sources when it comes to assist teams, but additionally monetary help for copays,” Valent says.
Along with assist teams, some organizations can join you with a one-on-one mentor or coach. For example, the coaches at Myeloma Coach by Healthtree are myeloma sufferers or caregivers who keep in contact with you, hear, and supply steerage on monetary assist, on-line sources, and extra.
When deciding amongst your many assist choices, Urvi Shah, MD, a myeloma specialist at Memorial Sloan Kettering Most cancers Middle, says you need to be true to your self.
“Sufferers must be cautious to select what’s proper for them,” Shah says. “For some, assist teams are useful. They need to know what lies forward and it reduces stress. For others, listening to an excessive amount of worsens stress and nervousness. Figuring out what sort of persona you could have may help you to resolve if you wish to attain out and to whom.”
Amy Pappas of Cleveland, OH, discovered she had a number of myeloma at age 45, after intense again ache despatched her to a backbone specialist. It turned out the most cancers had cracked her backbone. It was additionally in her ribs, pelvis and cranium. For assist, as an alternative of on-line teams, she relied on an in depth community of family and friends.
“Regardless that I did really feel actually sick [at times during treatment], I simply stored going,” Pappas says. “That’s my persona: attempting to really feel regular as I used to be getting higher. Distractions had been large for me. I might say to my pals, ‘Hey, I really feel like crap, however come over and distract me.’”
She additionally took benefit a few times every week of the yoga lessons that Cleveland Clinic presents for individuals with any most cancers sort. The lessons had been relaxed and small and included individuals in any respect completely different levels of their most cancers journey.
“Being round these individuals did really feel good,” she says. “It was a pleasant outlet and completely different from being in an everyday yoga studio.”
Guernsey is now in his second 12 months of remission. He says he’s feeling pretty much as good as he’s felt since he was 28 and nonetheless enjoying hockey. He nonetheless has common Zoom calls with people he met via a web based assist group. He additionally serves as a myeloma coach for others who’re going via the identical issues he has.
“I’m not a health care provider, so I don’t fake to be,” Guernsey says. “However I share my expertise and attempt to allow them to know what labored for me. It could possibly additionally work for them.”
