Young peo­ple with cancer face ex­tra hur­dles

The Borneo Post - Nature and health - - Eq - By Mar­lene Ci­mons

MATTHEW Zachary was 21 when his left hand quit work­ing. Af­ter months of mis­di­ag­noses, doc­tors found a brain tu­mour. Spe­cial­ists treated his cancer, which hasn’t re­curred. But the ex­pe­ri­ence changed him ir­re­vo­ca­bly. “I lost my life, but I didn’t die,” he says. A se­ri­ous pi­anist since age 11, Zachary, now 44, had thought he would spend his life work­ing in film, com­pos­ing mu­sic scores. But the fine motor skills in his left hand never fully re­turned, end­ing any chance he could pur­sue his dream ca­reer.

“When you are a pi­anist and a com­poser, you use both hands,” he says. “Also, I am left-handed.” Many of his friends drifted away, in part be­cause they couldn’t

han­dle his cancer and also be­cause they were ready to move on, even when he couldn’t. He lost a lot of weight, and his hair, and he lived on a liq­uid diet for six months. He needed 17 med­i­ca­tions to man­age the side ef­fects of ra­di­a­tion. All that

was bad enough. Even worse was his per­sis­tent feel­ing of iso­la­tion, both while he was in the hos­pi­tal and dur­ing the years that fol­lowed.

There was no one he could talk to about his fears, no emo­tional sup­port for peo­ple in his age group. “I was mis­er­able, anx­ious, de­pressed and mori­bund,” he says. More­over, hos­pi­tal set­tings were not de­signed for cancer pa­tients in their 20s who were too old for toy-filled pae­di­atric wards and too young for the non­de­script rooms that seemed more suit­able for older pa­tients. Although he wasn’t hos­pi­talised for long pe­ri­ods, he re­calls spend­ing a week in a hos­pi­tal room “full of 80-year-olds,” he says.

“There was noth­ing,” says Zachary, who had to move to Staten Is­land to live with his par­ents while un­der treat­ment. “I don’t say this an­grily. This was the 1990s, and those sys­tems just didn’t ex­ist.” Fastforward to Jen­nifer Tor­res, 35, a mort­gage an­a­lyst in Fort Worth, di­ag­nosed last au­tumn with colon and rec­tal cancer. She un­der­went surgery, chemo­ther­apy and ra­di­a­tion, and spent six weeks at Bay­lor Scott & White Med­i­cal Cen­tre. Un­like Zachary, she stayed in a small wing that un­der­went a $2 mil­lion ren­o­va­tion to ac­com­mo­date ado­les­cents and young adults with cancer.

The rooms are sunny and spa­cious. There is a mes­sage wall where pa­tients can write en­cour­ag­ing notes for one an­other. The wing has WiFi and smart tele­vi­sions along with a large lounge area with game ta­bles and a cof­fee bar geared to get­ting pa­tients out of their rooms and min­gling with their peers. Most im­por­tant, Tor­res had ac­cess to an ad­vo­cate called a “nurse nav­i­ga­tor,” a so­cial worker and oth­ers trained to help her deal with the so­cial, fi­nan­cial, phys­i­cal and emo­tional as­pects of be­ing a young adult with cancer.

“They helped me stay pos­i­tive,” she says, choking up. “It made me feel spe­cial. You get to know these peo­ple so well. You de­velop a bond. It made such a dif­fer­ence in my get­ting bet­ter.” Of the es­ti­mated 1.7 mil­lion new cases of cancer that are di­ag­nosed an­nu­ally, about 70,000 in­volve ado­les­cents and young adults, ac­cord­ing to the Na­tional Cancer In­sti­tute. Ado­les­cents and young adults with cancer, of­ten called AYAs, have been an in-be­tween, of­ten for­got­ten pop­u­la­tion. Groups that ad­vo­cate for them ar­gue that re­search, treat­ment and sur­vival rates have not kept pace with those of young chil­dren and older adults. “We are the in­vis­i­ble cancer gen­er­a­tion,” Zachary says. – Wash­ing­ton Post.

Ado­les­cents and young adults with cancer, of­ten called AYAs, have been an in-be­tween, of­ten for­got­ten pop­u­la­tion.

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