Indlela ukuxilongwa okungafanelekanga kwaba ngumthombo wokukhuthaza
Ngelixa amabali abucala angabi yinto eqhelekileyo kwi-About.com, le nto ibaluleke kakhulu kwingcaciso oyifumana kule website. Ingxelo yam engahambi kakuhle kunye nenca yoko kutheni ndenza umsebenzi owenzayo. Ukuba kwakungekhona ukufumana kwam isifo esifanelekileyo, andiyi kuba nguMkhokeli wakho wokuXhobisa uPhepha .
Ekupheleni kukaJuni 2004, ndafumana ibhola lebhola yegolfu enobunzima bam kwi-torso.
Akuzange kwenzeke kakubi-bekukhona nje.
Ngokukhawuleza ndenza idibaniso kunye nodokotela wam osapho kwaye, ngenxa yokuba wayengenayo ingcamango yokuba ungubani, wandithumela kwindlela yokugqirha eyayisusa loo mini. "Siza kukuxelela xa siva emva kwebhubhile," kwakungumzekelo wokugqithisa ugqirha njengoko ndabuyisela ihembe lami kwaye ndilungele ukuya ekhaya.
Kwiveki kamva, akukho lizwi. Ndaqhagamshelana neofisi yegulane kwaye ndaxelelwa ukuba iziphumo azizange zibuyele. Okwesine kaJulayi iholide ebangele ukulibaziseka, ngoko ndalinda.
Emva kweveki kamva, ugqirha wagqiba wandibiza ngeempendulo zam lebhu. "Unomhlaza ongaqhelekanga obizwa ngokuthi yi-panniculitis-njengeT-cell lymphoma," wandixelela.
Emva koko wawa ibhobho yesibini. Ndixelelwe ukuba isizathu sokuba iziphumo zebhabhi zithatha ixesha elide ngenxa yokuba umphumo wawunqabile - ukuba ibhodi yesibini ibizelwe ukuba yimbono yesibini . "Iilebhu ezimbini zizimeleyo ziqinisekisile ezi ziphumo," ndixelelwe.
"Siza kwenza ukuqokwa kwe-oncology kuwe ngokukhawuleza."
"Ngokukhawuleza kunokwenzeka" kuthatha iiveki ezingaphezu kweebini, kungeyona into engaqhelekanga njengoko ndiqinisekile ukuba uyazifuna ukuba unayo inyulo ye-oncology. Ngokukhawuleza ndaqalisa ukukhangela i-intanethi ngcaciso malunga ne-panniculitis engaphantsi-njengeT-cell lymphoma (SPTCL).
Kwakunzima ukufumana nantoni na ngenxa yokuba, njengokuba ugqirha wandixelele, akunqabile kakhulu.
Into endiyifunayo kukuba yayiyinto yokuphela, isifo esisebenza ngokukhawuleza. (Ndiyayiqonda indlela yokwenza unyango kwi-Centre ye-Moffitt Cancer isiye yaphuhliswa kungekudala.) Ngo-2004, umntu ode kunabo bonke abane-SPTCL babonakala behlala iminyaka emibini, kungakhathaliseki ukuba bafumene nayiphi na unyango.
Xa ekugqibeleni ndabona i-oncologist, wayedumala gqitha. UGqirha S, ndiza kumbiza, wandithumelele umsebenzi wegazi kunye ne-CT scan, zombini ezo zibuya zingenakulungela nayiphi na into engafanelekanga. Sekunjalo wagxininisa ukuba umsebenzi weebhu wagxotha ukungabikho kobunye ubungqina.
Kwakungenangqiqo kum. Ndandiziva kakuhle. Ndade ndidlala igalofu kanye okanye kabini ngeveki. Ndiyazi nje ukuba iziqhekeza zilahlekile.
Xa ndamnyusa ukuba ndifumane ulwazi oluninzi, wacacisa iimpawu zam ezongezelelweyo - ukutshisa okutshisa kunye nokusala ebusuku. "Kodwa mna ndingu-52," ndayilumkisa. "Kwiphepha le-52 bonke abafazi banemizimba yokugubha ebusuku kunye nokutshisa !"
Wayegxininisa ukuba iimpawu zam ezizihambelananga nexesha lokuyeka. Kunoko, wathi, beyizimpawu zam lymphoma. Ngaphandle kwe-chemo, wandixelela, ndiza kufelwa ekupheleni konyaka.
Ndacinga malunga nokuba kungenzeka ukuba iziphumo zebhabhi zazingalunganga.
Cha - kungekhona ithuba, wathi. Iilebhu ezimbini zazizimeleyo ziqinisekisile iziphumo. Ingcinezelo yokuqalisa i-chemotherapy yaqala ukunyuka.
Ngaphandle kwentsapho yam kunye nabahlobo abambalwa abasondeleyo, andizange ndabelane nabanye ngeendaba. Ibhizinisi lam sele lihlupheke- ukuba lizisebenzisayo kwaye i-inshorensi yonyango enyanisekileyo yayithetha ukuba ukuxilongwa kwam sele kuye kwabiza, kwakhona. Ndandichitha ixesha elininzi ixesha kuphando, ukukhathazeka, nokuhlawula ukutyelelwa ngogqirha kunye neemvavanyo ezazingekho phantsi kwe-inshurensi yam. Ubomi, yintoni eyashiywe kuyo, behla phantsi iibhubhu - ngokukhawuleza.
Ngelo xesha kwakunguAgasti, kwaye ndandenza isigqibo sokwenza.
Chemo, okanye akukho chemo? Ndafunda ukuba uDkt. S wayegula, kwaye iqabane lakhe uDkt H. wayeyithatha icala lam. UDkt. H wandibuza isizathu sokuba ndilinde ukuqalisa i-chemo, kwaye ndamxelela ukuba ndizama ukufumana enye i-oncologist ngombono wesibini. Kwakukho amanqaku amaninzi kumbuzo. Impendulo yakhe kum inenza ndivezele nanamhla, "Into enayo ayinqabileyo, akukho mntu uya kukwazi malunga nayo kunoko."
Ukuba nantoni na enyanzele ukuba ndiqale ukumba ubunzulu, oko kwakunjalo. Ngoku ke "ndagula" kwaye ndandithukuthele!
Kwiintsuku ezimbalwa emva koko, ndadla isidlo kunye nabahlobo abathile bezoshishino, kungekho namnye owaziyo nayiphi na into malunga nokuxilongwa kwam. Iiglasi ezimbalwa zewayini zandikhulula umlomo wam - ndabelana kunye nokuxilongwa kwam kunye nabo kwaye, ke, bahamba. Kodwa omnye umhlobo wayedlula ngaphezu. Wadibana nomhlobo we- oncologist wakhe waza wandibiza ngelanga elilandelayo ukuba ndixelele umhlobo wakhe okwangoku uphatha umntu nge-SPTCL kwaye uza kuwenza ixesha lokuba ndifuna ukwenza i-aphoyintimenti.
Le ngqungquthela encinci yeendaba ezilungileyo yavutha umlilo phantsi kwam. Ndenze isigqibo sokuba ndibone umhlobo wakhe ugqirha ngeveki kamva, emva koko ndidibanisa i-oncologist yam yangaphambili ukuba ikopi yam iirekhodi ukuba ndihambe nam. Iirekhodi ngesandla, ndaqalisa ukukhangela i-intanethi ukuba ndichaze yonke into engingazange ndiyiqondeyo ukuba ndifunde ngakumbi.
Ukuba bekufuneka ndiqwalasele umzuzu ochanekileyo xa lo myalelo wokuxhobisa ngesigulane kunye nomsebenzi wokukhuthaza, waqala ukuba loo mzuzu.
Iziphumo zebhabhi azizange zipapashwe. Enyanisweni, akukho ngxelo iqinisekisile ukuxilongwa kwi-SPTCL, ngokuchanekileyo. Omnye wabo wathi "unolumkiso olukhulu," kwaye enye yathi, "ininzi ihambelana nayo." Akukho namnye kubo owayeqinisekile . Kanti enye inkcazelo yesi sifo esingaqondakaliyo endiyicinga ukuba ayixhaswanga yafunyanwa.
Ukuqhubela phambili, ingxelo yesibini yebhubhile yathi i-biopsy ye-bump yayithunyelwa ngenxa yesinye uvavanyo olubizwa ngokuthi "i-clonality" - kodwa akukho ziphumo zolu vavanyo ebezifakwe kwiirekhodi zefeksi kum.
Ndazibuza ukuba yeyiphi i-clonality, kwaye kutheni loo miphumo ayifakiwe kwiirekhodi zam.
Ndaqhagamshelana neofisi yam yangaphambili ye-oncologist kwaye ngamangalisa, babengenaso ingxelo yokuhlolwa kwe-clonality. Ngoko, ngelixa bekhwaza ukuba ndiyifumane, ndakhangela ngokucacileyo oko kuhlolwa.
I-Clonality, iyavela, inquma ukuba zonke iiseli ezingaqhelekanga zivela kwikholamu enye .
Ukubeka nje, ukuba ulungile, uvavanyo luyichukumisa kakhulu umdlavuza, njengengculazi.
Xa ekugqibeleni ndifumene ikopi yaloo ngxelo yokugqibela yebhu, ndafunda ukuba kwakungekho nto.
Njengoko ndalindela ukumbona ugqirha wam omtsha, ndaqala ukucacisa iziphumo. Ndakhangela iindawo ezihlukahlukeneyo (khumbula i-gentian violet evela kwi-biology yesikolo esiphakeme?), Iileki zesiGrike kunye nemigqirha yezokwelapha. Ngomxholo kunye neziphumo zeclonality, kwacaca ukuba ndingaba nomhlaza, kungakhathaliseki ukuba lawa ma-labs kunye ne-oncologists bacinga ntoni.
Ngeli xesha ndaya kwindwendwe lam, ndagunyazwa kwaye ndatshutshiswa. Ndaziqinisekisile ngeziphumo zam, kwaye ndabelana naye yonke into endiyifunde. Wayehlolisisa, wayithabatha iincwadi ezimbalwa kwiishefu zakhe, kwaye wandinceda ndifunde ngakumbi. Ukususela ekufundeni ukuba kwakukho amacala angaphantsi kwama-100 avakaliswe kwi-SPTCL kule minyaka elishumi edlulileyo ukuba ndixelelwe ukuba nangona ndibenayo i-SPTCL, bekuya kuphuculwa kangcono nge-radiation kune-chemo, ndandiziva ndingcono ngcaciso emfutshane.
Emva koko ugqirha wam omtsha wacetyisa ukuba i-biopsy yam ithunyelwe kwizodwa kwiiNational Institutes of Health, inxalenye yombuso wase-US, ukuhlaziywa. Kwiiveki ezintathu kamva, ekupheleni kukaSeptemba, ndanikwa ubungqina bokuthi, eneneni, andinayo umdlavuza .
Ukuxilongwa ngokuchanekileyo kwakungenxa ye-panniculitis, ukuvuvukala kweeseli ezinamafutha. Akuzange kubangele ingxaki enye ukususela apho.
Uncedo? Ngokuqinisekileyo. Kodwa ukuphendula kwam kuqala kwakufana nentukuthelo.
Emva koko, ndandifumana i-chemo kwaye ndasinda, bandixelele ukuba ndiphilisiwe kwisifo esingazange ndibe nayo. Kwaye njengothusayo, ndafumana amatyala kwi-intanethi yabantu abaye bafumanisa ukuba babe ne-SPTCL kwaye baphathwa nge-chemo efile ngexesha lokunyanga; Iipopopes zibonise ukuba abazange baqale nge-SPTCL. Amagqwetha amacala aye aphumelele.
Amava atshintshile ubomi bam ngeendlela ezininzi . Enye into, ndihlala ndikholelwa ukuba yonke into eyenzeka ngesizathu.
Ngoko ke ukungahambi kakuhle kwandiphoqelele ukuba ndibuze - yintoni ehlabathini apho isizathu esinokuthi sibe naloo mava?
Oko kwandikhokelela kwinto ebalulekileyo endiyenzile ebomini bam. Ngo-2006, ndatshintsha imisebenzi ukuba ndiqale ukuncedisa abanye ukuba bancede bahambe ngendlela yokunakekelwa kwezempilo eMelika . Ndibhalela amanqaku okuxhobisa isiguli apha kwi-About.com. Ndibhale ezine iincwadi. Ndiyathetha lonke ilizwe naseCanada malunga nezihloko zokuxhobisa izigulane. Kwaye ndawasekela kwaye ndiqhuba umbutho wabameli abazimeleyo, abaxhamli bezodwa - abantu abalapho bakhonza abanye abantu - njengawe - imihla ngemihla ukuhamba indlela yokunakekelwa kwezempilo ukuze bafumane oko mfuneko. (Fumana okunye malunga nale mi sebenzi kwi-bio yam.)
Kuye kwenzeka ukuba into eyona nto eyona eyenzekayo kum (i-misdiagnosis), ekugqibeleni, into eyona nto yenzeke kum, nayo.
Ulwazi luyinto enamandla, kwaye nangakumbi xa ikwabelwana.
........ Ukuhlaziywa: 2011 .........
Ngomhla ka-2010, ndayifunda incwadi ethi, Ubomi obungapheliyo be-Henrietta Lacks , nguRebecca Skloot, obangela ukuba ndiqale ndibuze ukuba kwenzeke ntoni "kwintonga" yam - isisu esasususa kum, ngo-2004, esasingenakucatshulwa.
Kwaye oko ndafunda! Ukususela kwisitoreji kwenzeni yokwenza inzuzo, kukho into eninzi eyenziwa kunye neziqwenga zomzimba zethu ezisuswe kuthi. Funda kabanzi apha malunga nento eyenzekayo kwigazi, iiseli kunye nezinye iimpawu zomzimba ezisuswe ngokubanzi, ngoko ufunde ibali malunga noko ndakufundile ngesisu sami kunye nalapho namhlanje.
........ Ukuhlaziywa: 2013 .........
Kwiminyaka emithandathu emva kwentswelo yam yokuqala kunye nesiphumo sayo esiphumelelweyo, intsha entsha yabonakala ...
Ndandiqaphela uhambo kuba ndaqonda kwangaphambili ukuba ukuba isigulane esinamandla kunye nesibindi siguqulele amava onke.
Ndidibanise eluhambweni! Kwiminyaka Emithathu Kamva - Iphulo lesibini libonisa ukuba uXhotyiso lushintsha yonke into