I-METAvivor and Groups Groups ye-Metastatic Breast Cancer Iziguli

I-METAvivor Uhlobo Lontanga Lamaqembu Osekela Ngamanye amazwe ase-United States. Baletha induduzo, ukusekelwa kanye nokuxhumana nabesifazane nabesilisa abaphila nomdlavuza webele we-metastatic (MBC), ovame ukubizwa ngokuthi umdlavuza webele wesiteji se-Stage IV . Umdlavuza wabo usakaze ngaphesheya kwesifuba ezithombeni ezikude. Akuyona indlela yokuphulukisa. Ukwelapha, okuqhubekayo, kudonsa ngokomzimba, ngokomzwelo nangokwezimali.

Othandana nabo ukuhlola amaqembu okusekela kuyisidingo esibucayi seziguli zamathambo hhayi kuphela njengomthombo wokusekela , kodwa ukunciphisa ukuhlukaniswa okuvame ukuhlangenwe nakho nalabo abanesifo se-metastatic.

I-METAvivor Groups Support

Iqembu ngalinye linomholi oqeqeshiwe onomdlavuza webele wesisu. Amaqembu ngabanye ahlangana ndawonye ezindaweni ezihlala emphakathini , ezweni lonke, azi ukuthi ilungu ngalinye leqembu labo liyaqonda ukuthi kusho ukuthini ukuba nesifo se-metastatic. Kukhona ukukhulula ukwazi ukuthi, kuleli qembu, asikho isidingo sokuchaza ukuthi uyaphi. Wonke amalungu angakwazi ukubona futhi asekele.

Iqembu ngalinye lesifunda lihlangana ndawonye ezindaweni ezingezona ezokwelapha ezifana nezitolo zekhofi, zokudlela, nezinye izingosi ezibili zikhululekile futhi zinikeza ukufinyelela okulula kwamalungu eqembu. Imihlangano ingabandakanya isikhulumi somvakashi, futhi, ngezinye izikhathi, umcimbi okhethekile ungaba yingxenye yeqembu lokusekela kontanga.

Akukho mkhawulo ngobude besikhathi somhlangano ngamunye weqembu, nemihlangano eminingi ehlala cishe amahora amabili.

I-METAvivor yasungulwa kulabo abaphila nomdlavuza webele we-metastatic. Inhlangano igxile ekucwaningweni. Umsebenzi wabo, njengoba kuchazwe ezincwadini zabo, uwukuthi:

1. Ukwandisa ukuqwashisa mayelana nokungaxhaswa kwemali ukuthi ucwaningo oluncane lwe-metastasis emhlabeni womdlavuza, nokuxhasa ngokuqondile uhlobo locwaningo okwamanje olutholakali.

1. Ngomgomo oyinhloko wokwandisa impilo nokuqeda ukufa okuvela ku-MBC, i-METAvivor imiklomelo yemiklomelo yemiphrojekthi yocwaningo ekwazi ukushintsha i-MBC isifo esibulalayo kuya esimweni esingapheli nesimo sokuphila esiphezulu.

Ukubaluleka Kontanga Lokuthandana Amaqembu Osekela

Iziguli ze-Metastatic zivame ukukhuluma ngobunzima bokuya emaqenjini okusekela umdlavuza wamabele angase abe khona emiphakathini yabo yasekhaya.

Iziguli ze-metastatic kungenzeka ukuthi azizwe zihlala zamukelekile emaqenjini abhekene ikakhulukazi abesifazane nabesilisa abatholakala benesifo somdlavuza webele; bangase babe nomuzwa wokuthi isifo sabo se-metastatic sisabisa abanye eqenjini. iningi lethu elitholakale lingumdlavuza wesigaba sokuqala sesaba ukuphindaphinda okuzoholela ekubeni sibe nemetastatic.

Abesilisa nabesilisa abanezifo ze-metastatic bangase babe nomuzwa wokuthi abakwazi ukubhekana nezimpikiswano zalabo abanakekelwa ukwelashwa okwesikhashana futhi ukuhlushwa kwabo okuhluke kakhulu kunabo. Bangase babe nomuzwa wokuthi la maqembu awahlangabezani nezidingo zabo njengeziguli zomdlavuza webele we-metastatic.

Awekho amaqembu amaningi asekela okugxila kuphela ezindabeni kanye nokukhathazeka kwalabo abaphila nomdlavuza webele we-metastatic.

La maqembu angaba nezinhlu zokulinda futhi abe nokulinganiselwe isikhathi. Kungenzeka kwenziwe ngendlela engavumeli ukunikezwa kwamahhala futhi uthathe kolwazi olubaluleke kakhulu kumuntu onesifo se-metastatic. Inkinga enkulu namaningi ala maqembu ukuthi awaholwa umuntu olwa nesifo esifanayo. Kungakhathaliseki ukuthi umholi onjalo uzwela kangakanani, akakwazi ukuqonda ngokugcwele noma ukuqonda imizwa nezimo eziyingxenye yokuba nesifo esingelapheki.

Umkhankaso osanda kuqaliswa, amaqembu ohlelo lokusekela abalingane atholakala ngemuva kweqembu lokusekela elaqala ngo-2007, e-Annapolis, eMad Maryland nge "CJ" Corneliussen-James.

I-CJ yatholakala ukuthi inomdlavuza webele ngonyaka ka-2004. Umdlavuza wakhe wahlushwa ngonyaka ka-2006. Lapho efuna futhi efuna ukuya enkampanini yokusekela labo abanomdlavuza webele we-metastatic, akatholanga iqembu elihlangabezane nezidingo zakhe. Ngakho, wasungula owodwa.

Eminyakeni emibili kamuva, yena nabangani abathathu besifazane, nabo babe nomdlavuza webele wesisu, bahlangana ukuze bathole uMETAvisor, owaba yinhlangano engenzi inzuzo ngo-2009. I-CJ yiyona kuphela eyasungula umsunguli. Usebenza njengoMongameli we-METAvivor; futhi njengoMqondisi Wokumemezela.

Othandana Nokwesekwa Kwabaholi Abaholi Beqembu Lokusekela

Ngo-2016, i-METAvivor yathumele isibonelelo ku-Avon, eyayixhasiwe ekusekeleni uhlelo lokuqeqesha abaholi beqembu elizobalungiselela ukuqala nokuphatha iqembu esifundeni sabo sezwe. Uqeqesho Lontanga Lokuxhaswa Kwabaholi Beqembu Lontanga lihlanganisa uhlelo lokuqeqeshwa kwewebhu olufundiswa yi-CJ futhi lubandakanya: umhlahlandlela wokuqeqesha ongakulanda, i-flyer engasetshenziselwa ukukhangisa leli qembu, nefomu lokubhalisa ilungu elisha. Iqembu le-Facebook elivaliwe labaholi bontanga linikeza indawo yokuhlanganyela imibono nezinselelo komunye nomunye.

Umhlahlandlela wokuqeqesha uhlanganisa umlayezo ovela ku-CJ ochaza izizathu nezinzuzo zokuqhathanisa amaqembu okusekela othandana, ethi:

"Njengoba wonke umuntu one-MBC eyazi, abantu abangesizo iziguli ze-Stage IV bangase bangaqondi, noma baze bazizwe, i-metastasis nokuthi kusho ukuthini. Uma sifuna ukukhuluma mayelana ne-Mets nabantu abaningi, impendulo evamile iwukuthi 'i-Mets? Yini leyo?' noma 'Huh?' Ngakho-ke, lapho sithola ezinye iziguli ze-MBC-noma ngokuya emibuthanweni, ukuxhumana okuvela odokotela bethu, noma ngezinye izindlela-siphefumula ukukhulula kokuthola ukuthi ekugcineni sithole umuntu oqonda ukuthi siyini, nokuthi siyini cishe. Ukukwazi ukuzwa lowo mzwa wokuqondisisa njalo kuvamile kakhulu-futhi kubaluleke kakhulu. Yingakho amaqembu asekela i-MBC ayadingeka kakhulu. Kuphi okunye edolobheni lakithi, ngaphandle kwesikhungo se-oncology, ungathola abantu ababazi ngisho nokuthi imetastasis ingubani?

Amaqembu asekela ontanga anenzuzo ehlukile. Banikeza ithuba loku:

1. Yakha umbuthano wabangani bendawo abaqonda i-MBC futhi abanganikeza iseluleko nesizo esiwusizo.
2. Phuma, uphumule futhi uxoxisane nezindaba ze-MBC nalabo abangaqondi kuphela kodwa empeleni bajabulele ukukhuluma ngale ndaba.
3. Shintsha okungalungile ngokusebenzisa ukuxilongwa kwakho ukwenza umehluko empilweni yabanye nge-MBC.
4. Khuluma ngemithi yokwelapha ye-MBC, nemiphumela emibi, nezinye izindaba zezokwelapha ngaphandle kokuchaza nokuchaza ngokuphindaphindiwe.
5. Lika izitatimende zomphakathi ezingacabangi, yenza i-MBC yakho ihlaziye amahlaya ujabule, futhi uhleke izinto ezingamshaqisa umuntu emgwaqweni ngenkathi eqondwa ngokushesha. "

Abaholi beqembu yizo zonke izisebenzi zokuvolontiya, ngamunye wabo ophethe umsebenzi wokuhlela imihlangano ejwayelekile yamalungu, abanikeze amathuba okuhlangana ndawonye ezindaweni ezinethezekile nezamukelekayo.

Vakashela i-METAvivor uma ufuna ukujoyina iqembu, ubuyekeze uhlu lwamasayithi weqembu wamanje kanye nabaholi beqembu, noma ucele ukuqeqeshwa kwabaholi beqembu.

_Umthombo:

_{"CJ" uCorneliussen-uJames, uMongameli noMqondisi woMmeli, uMETAvivor, metavivor.org}