Yeka ukuthi ukuxilongwa okungalungile kwaba kanjani umthombo wokugqugquzela
Ngenkathi izindaba zomuntu siqu zingase zingavamile ku-About.com, lokhu kuhambisana kakhulu nolwazi ozothola kule webhusayithi. Kuyindaba yami yokuhlukumezeka kwengqondo kanye nencazelo yokuthi kungani ngenza umsebenzi engiwenzayo. Ukube bekungekho ukuthola kwami ukuxilongwa okungalungile, angingeke ngibe ngumhlahlandlela wakho wokunika amandla okubekezela .
Ngasekupheleni kuka-June 2004, ngathola ibhola legalofu elincane ebusweni bami.
Akuzange kuzwakale ubuhlungu - bekukhona nje lapho.
Ngavele ngenza i-aphoyintimenti nodokotela wami womkhaya futhi, ngoba engazi ukuthi kwakunjani, wangithumela kudokotela ohlinzayo owawukhipha ngalo ntambama. "Sizokwazisa uma sizwa emuva ebhodini," kwakuyizwana lokushiya ohlinzayo njengoba ngiphinde ngiphinde ngibuyisa ihembe lami futhi ngilungele ukuya ekhaya.
Ngemva kwesonto, akukho gama. Ngathintana nehhovisi lohlinzayo futhi ngatshelwa ukuthi imiphumela ayingakabuyi okwamanje. Okwesine kweholide kaJulayi bekubangele ukubambezeleka, ngakho ngilinde.
Ngemva kwesonto, udokotela ohlinzayo wagcina engibiza ngemiphumela yebhu yami. "Unomdlavuza ongavamile kakhulu obizwa nge-panniculitis-efana ne-T-cell lymphoma," wangitshela.
Wabe eshiya ibhomu lesibili. Ngatshelwa ukuthi isizathu sokuthi imiphumela yelebhu ithathe isikhathi eside ngoba umphumela wawungavamile - ukuthi ibhodi lesibini labizelwe umbono wesibili . "Laba ababili baye bazimela ngokuzimela," ngatshelwa.
"Sizokwenza ukuqokwa kwe-oncology kuwe ngokushesha."
"Ngokushesha ngangokunokwenzeka" kuthatha amasonto angaphezu kwamabili, akuyona into engavamile njengoba ngiyaqiniseka ukuthi uyazi ukuthi ngabe usudinga ukuqokwa kwe-oncology. Ngokushesha ngaqala ukusesha i-Intanethi ngolwazi nge-panniculitis engaphansi kwe-T-cell lymphoma (SPTCL).
Kwakunzima ukuthola lutho ngoba, njengoba udokotela ohlinzayo engitshele yona, kuyinto engavamile kakhulu.
Lokho engangikufunda kwakungukuthi kwakuyisifo esibulalayo, isifo esheshayo. (Ngiyaqonda ukuthi inqubo yokwelashwa e-Moffitt Cancer Centre isanda kuthuthukiswa eyenza ukuphila iminyaka emibili.) Ngo-2004, umuntu ode kunabo bonke abane-SPTCL babonakala bephila iminyaka embalwa, kungakhathaliseki ukuthi bawutholile noma cha noma yikuphi ukwelashwa.
Lapho ekugcineni ngibona i-oncologist, wayedikibala kakhulu. UDkt. S, ngizoyibiza, ngithumelele umsebenzi wegazi kanye ne-CT scan, zombili ezabuya zingalungile nganoma yisiphi isimo esingavamile. Noma kunjalo wagcizelela umsebenzi webhu ukuthi wagxila ukungabi nalunye ubufakazi.
Kwakungenangqondo kimi. Ngangizizwa kahle. Ngangidlala igalofu kanye noma kabili ngesonto. Ngangingazi ukuthi izingcezu zazingekho.
Ngenkathi ngimcindezela ngolwazi oluthe xaxa, wachaza izimpawu zami ezengeziwe - ukushisa okushisayo nokujula ebusuku. "Kodwa ngineminyaka engu-52," ngangiyala. "Ku-52 bonke abesifazane baneziphukuphuku zasebusuku kanye nokushisa okushisayo !"
Uphikelela ukuthi izimpawu zami azihambisani nokuya esikhathini. Esikhundleni salokho, wathi, babeyizimpawu ze-lymphoma yami. Ngaphandle kwe-chemo, wangitshela ukuthi ngabe ngizofa ekupheleni konyaka.
Ngabuza ukuthi kungenzeka ukuthi imiphumela yebhu yayingalungile.
Cha - hhayi ithuba, uthe. Amalebhu amabili ayezimele ngokuzimela aqinisekisa imiphumela. Umfutho wokuqala i-chemotherapy waqala ukukhuphuka.
Ngaphandle komndeni wami nabangane abambalwa abaseduze, angizange ngibelane nabanye izindaba. Ibhizinisi lami selivele lihlupheka - ukuba ngiziqashile futhi ngine-inshuwalense yezempilo enomsoco kwakusho ukuthi ukuxilongwa kwami manje sekubizayo, futhi. Ngangichitha isikhathi esiningi kakhulu ngiphenyo, ngibheka, futhi ngikhokhela ukuvakashelwa nokuhlolwa kwezidakamizwa ezazihlanganiswa kuphela ngomshuwalense wami. Ukuphila, okwakushiywe kuso, behla phansi ama-tubes - okusheshayo.
Ngaleso sikhathi kwakungu-Agasti, futhi nganginesinqumo sokwenza.
Chemo, noma akukho chemo? Ngafunda ukuthi uDkt. S wayegula, kanti umlingani wakhe uDkt H. wayebhekele icala lami. UDkt. H wangicela ukuthi kungani ngilindele ukuqala u-chemo, futhi ngamtshela ukuthi ngizama ukuthola enye i-oncologist ngemibono yesibili. Kwakukhona amanothi amaningi embuzo. Impendulo yakhe kimi iyangithukuthelisa kuze kube yilolu suku, "Lokho onakho kuyinto engavamile, akekho ozokwazi okwengeziwe ngakho kunami."
Uma kukhona okuphoqelele ukuba ngiqale ukumba ngokujulile, kwakungenjalo. Manje ngangigula "futhi ngithukuthele!
Ngemva kwezinsuku ezimbalwa, ngangidla nabangane bebhizinisi, futhi akekho owaziyo mayelana nokuxilongwa kwami. Izingilazi ezimbalwa zewayini zazikhulula izindebe zami - ngabelana nabo ngokuxilongwa kwami futhi, eqinisweni, zazungezwa. Kodwa umngane oyedwa wayedlula kakhulu. Wathintana nomngane wakhe oncologist futhi wangibiza ngosuku olulandelayo ukungitshela umngane wakhe okwamanje ukwelapha othile nge-SPTCL futhi angenza isikhathi sami uma ngifuna ukwenza i-aphoyintimenti.
Leyo mininingwane emincane yezindaba ezinhle yatshisa umlilo ngaphansi kwami. Ngenza i-aphoyintimenti yokubona umngane wakhe odokotela ngesonto elizayo, bese ngithinta i-oncologist yami yangempela ngamakhophi amarekhodi ami ukuthi angithathe nami. Amarekhodi esesandleni, ngaqala ukusesha i-Intanethi ngezincazelo zegama ngalinye engingaluqondi ukuze ngibone ukuthi ngingakwazi yini ukufunda okwengeziwe.
Uma kwakudingeka ngibhale umzuzu oqondile lapho lo mkhankaso wokunika amandla ngesiguli kanye nokumemezela kuqala, lowo mzuzu kungaba njalo.
Imiphumela yebhu ayifakwanga. Eqinisweni, akukho umbiko oqinisekisile ukuxilongwa kwe-SPTCL, ncamashi. Omunye wabo wathi "uyasolisa kakhulu," kanti enye yathi, "iningi elihambisana nalo." Akekho noyedwa wabo owaqiniseka . Noma kunjalo enye inkomba yalesi sifo esingavamile engangicabanga ukuthi ayisekelwa yatholakala.
Ngaphezu kwalokho, umbiko webhulethi wesibili wawuthi ukuqhuma kwe-biopsy kwakuthunyelwa okwamanje okunye okuvivinywa okuthiwa "i-clonality" - kodwa akukho miphumela yalolu vavanyo eyayifakwe kumarekhodi afeksiwe kimi.
Ngangizibuza ukuthi yiyiphi i-clonality, nokuthi kungani leyo miphumela ayifakiwe kumarekhodi ami.
Ngathintana nehhovisi lami langaphambili le-oncologist futhi ngokumangalisayo, babengenalo irekhodi lokuhlolwa kwe-clonality. Ngakho-ke, ngenkathi bekhahlela ukuze bayithole, ngibheke kahle ukuthi lo mvivinyo uwuphi.
Ukwenziwa kobuciko, kuvela, kunquma ukuthi wonke amaseli angavamile avela ku- clone eyodwa .
Mane nje, uma kulungile, ukuhlolwa kuphakamisa kakhulu umdlavuza, njenge-lymphoma.
Lapho ekugcineni ngithola ikhophi yalo mbiko wokugcina welebhu, ngafunda ukuthi kwakungalungile.
Njengoba ngilindele ukubona udokotela wami omusha, ngaqala ukucacisa imiphumela. Ngibheke phezulu ngezitshalo ezihlukahlukene (khumbula i-gentian violet kusuka e-biology esikoleni esiphakeme?), Izincwadi zesiGreki kanye nemigomo yezokwelapha. Ngomphumela wempumelelo ye-clonality, kwacaca kakhulu kimi ukuthi anginayo umdlavuza, kungakhathaliseki ukuthi lawo ma-labs kanye ne-oncologists bacabanga ngani.
Ngesikhathi ngihambela ukuhambela kwami, nganikwa igunya futhi ngisusiwe. Ngangiqiniseka kakhulu ngemiphumela yami, futhi ngabelana naye konke engangikufundile. Wangihlola, wathatha izincwadi ezincane emashalofini akhe, wangisiza ukuba ngifunde okwengeziwe. Kusukela ekufundeni ukuthi kwakukhona amacala angaphansi kuka-100 abikiwe nge-SPTCL eminyakeni eyishumi edlule ukutshelwa ukuthi ngisho noma ngabe nginayo i-SPTCL, kungcono kube nokuphathwa ngemisebe kune-chemo, ngangizizwa kangcono ngomzuzu.
Khona-ke udokotela wami omusha wakhuthaza ukuba i-biopsy yami ithunyelwe kumchwepheshe kwi-National Institutes of Health, ingxenye kahulumeni wase-US, ukuze kubuyekezwe. Ngemva kwamasonto amathathu, ngasekupheleni kukaSeptemba, nginikezwa isiqiniseko sokuthi, empeleni, ngangingenayo umdlavuza .
Ukuxilongwa okuqondisiwe kwakungenxa ye-panniculitis, ukuvuvukala kwama-fat cells. Akuzange kubangele inkinga eyodwa kusukela ngaleso sikhathi.
Ukukhulula? Ngokuqinisekile. Kodwa ukusabela kwami kokuqala kwakufana nokuthukuthela.
Ngemuva kwalokho, ngabe ngifake i-chemo futhi ngisinda, ngabe bekungitshele ukuthi ngiphulukiswe isifo engangingakaze ngibe nayo. Futhi njengoba nje ngesabeka, ngathola amacala e-intanethi yabantu abaye batholakala benesifo se-SPTCL futhi baphathwa nge-chemo owashonile ngesikhathi sokwelashwa; ama-autopsies abonise ukuthi abazange baqale nge-SPTCL. Amacala omthetho ayewunqobile.
Okuhlangenwe nakho kwashintsha impilo yami ngezindlela eziningi . Okokuqala, ngihlale ngikholelwa ukuthi konke kwenzeka ngenxa yesizathu.
Ngakho lokhu ukuhlukumeza kabi kwangiphoqa ukuba ngibuze - yini emhlabeni okungenzeka kube yinto enjalo?
Lokho kwangikhombisa ekubaluleke kakhulu engikwenzile empilweni yami. Ngo-2006, ngashintsha imisebenzi ukuze ngiqale ukusiza abanye ukuba basize ngokwabo baqonde indlela yezempilo yaseMelika . Ngibhala izihloko zokunika amandla isiguli lapha ku-About.com. Ngibhale izincwadi ezine. Ngikhuluma ezweni lonke naseCanada ngezihloko zokuhlomula ngesiguli.Ngase ngisekela futhi ngisebenzela inhlangano yabameli abazimele abazimele, abantu abangekho lapho basiza abanye abantu - njengawe - nsuku zonke ukuhamba ngesistimu yokunakekelwa kwezempilo ukuze bathole lokho isidingo. (Thola okuningi mayelana nayo yonke le misebenzi ku-bio yami.)
Kuvela ukuthi into engakaze yenzeke kimi (ukuhlukumeza kabi), ngokuhamba kwesikhathi, into engcono kakhulu eyenzeka kimi, futhi.
Ulwazi luyinto enamandla, futhi ngisho nangaphezulu lapho ikwabelwana.
........ Ukubuyekeza: 2011 .........
Ngo-2010, ngifunde incwadi ethi The Immortal Life of Henrietta Lacks , nguRebecca Skloot, okwangenza ngaqala ukubuza ukuthi kwenzekani "emthonjeni" wami - lesi sifo sasuswa kimi ngo-2004 okwakungakaqondwa kahle.
Futhi lokho engikufundile! Ukusuka kwisitoreji kuya ekukhiqizeni inzuzo, kukhona okuningi okuqhubekayo nezicucu zomzimba wethu ezisuswe kithi. Funda kabanzi lapha mayelana nokuthi kwenzekani egazini, amangqamuzana kanye nezinye izibonelo zomzimba ezisuswe ngokujwayelekile, bese ufunda indaba ngalokho engikufundile mayelana nesisu sami nokuthi kuphi namuhla.
........ Ukubuyekeza: 2013 .........
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