When 69-year-old Keith Guernsey from Gainesville, GA, first came upon he had a number of myeloma, it was a whole shock. He’d simply gotten previous prostate most cancers surgical procedure and was trying ahead to placing most cancers behind him. He hadn’t seen any indicators of one other well being downside. However, blood exams his physician ordered associated to the sooner most cancers led to the unthinkable: Guernsey was going through a brand new, and this time treatable however incurable, most cancers prognosis.
“My spouse turned 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 instructed to get her affairs so as — that she had 6 months to reside,” Guernsey stated. “She’s been in remission for 20 years. So, she provides me and others numerous hope. It’s a really supportive group.”
Whereas a number of myeloma is a uncommon most cancers, there are many assets out there to assist individuals who have it. An excellent place to start out is your individual care crew, 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 will help you deal with the prognosis.
“That is an important factor for sufferers to have entry to,” Valent says. “The emotional ache is oftentimes simply as unhealthy 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 speak to a social employee, who can join you with transportation assist and different help. A case supervisor could be useful if you happen to’re in want of nursing care at residence. She additionally recommends assist teams, which can be in-person or on-line.
“I all the time inform sufferers that they will google a number of myeloma assist teams and get an entire checklist,” O’Hare stated. “That is the fantastic 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 assets 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. As an 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 support, on-line assets, and extra.
When deciding amongst your many assist choices, Urvi Shah, MD, a myeloma specialist at Memorial Sloan Kettering Most cancers Middle, says try to be true to your self.
“Sufferers ought to 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 anxiousness. Understanding what kind of character you have got may help you to resolve if you wish to attain out and to whom.”
Amy Pappas of Cleveland, OH, came upon 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.
“Although I did really feel actually sick [at times during treatment], I simply saved going,” Pappas says. “That’s my character: making an attempt to really feel regular as I used to be getting higher. Distractions have been large for me. I may say to my associates, ‘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 provides for individuals with any most cancers kind. The lessons have 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 nearly as good as he’s felt since he was 28 and nonetheless taking part in hockey. He nonetheless has common Zoom calls with people he met by means of an internet assist group. He additionally serves as a myeloma coach for others who’re going by means of the identical issues he has.
“I’m not a physician, 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 might probably additionally work for them.”