Sunday World - - News - COBÉ VAN DER WESTHUIJZEN

NELISA Si­pamia was di­ag­nosed with breast cancer in Oc­to­ber 2007. Since her or­deal she has be­come a voice for women who have suf­fered from breast cancer, bring­ing ed­u­ca­tion and aware­ness into ru­ral ar­eas and help­ing peo­ple make in­formed choices about their health.

Her jour­ney in­spired her to help change the stigma of cancer by talk­ing about it in a lan­guage which peo­ple could un­der­stand.

Si­pamia’s jour­ney started af­ter she felt a strange pain in her breast. There was no lump, just pain. The doc­tor sent her for a mam­mo­gram and she em­barked on a jour­ney which started in a haze of de­nial and mis­un­der­stand­ing and changed the course of her life for­ever.

They said that there was some­thing in there and I needed to see a sur­geon and have an op­er­a­tion, she says . It was such a shock to me when they told me it was cancer. You ask your­self is this right? Is it me? When I saw the sur­geon I told him it was a cyst, not cancer, but the surgery was sched­uled, the di­ag­no­sis made. I re­mem­ber ask­ing him to please, let me keep my breasts, and he ex­plained that it would de­pend on how far the cancer had spread. I woke up, and my breast was gone.”

For Si­pamia, it was an ex­pe­ri­ence which could have been made far less ter­ri­fy­ing if she’d felt more in­formed and un­der­stood more about what her op­tions were.

I was given all sorts of ad­vice by peo­ple say­ing I shouldn’t have done this or done that or that I should have seen a san­goma,” says Si­pamia. I think what I did need was ed­u­ca­tion. Peo­ple need far more clar­ity about the pos­si­bil­i­ties be­fore they go into the­atre and about their di­ag­no­sis. In ru­ral com­mu­ni­ties, peo­ple are not be­ing in­formed and even char­i­ties are not get­ting their mes­sage to the peo­ple. That’s be­cause ad­vice is not be­ing given in the right lan­guage.”

Ru­ral com­mu­ni­ties face in­or­di­nate dif­fi­cul­ties when it comes to ed­u­ca­tion. Learn­ing English is hardly a pri­or­ity, es­pe­cially when it isn’t spo­ken at home. As a re­sult, many peo­ple don’t un­der­stand the im­pact of cancer or know how to de­tect it be­cause aware­ness cam­paigns are pri­mar­ily in English.

No­body told me about re­con­struc­tion for my breast. I wasn’t given the choice,” says Si­pamia. I am not say­ing it’s some­thing I would do, but I should have been told about it so I could make an in­formed de­ci­sion.”

For Si­pamia, it isn’t about forc­ing peo­ple to stop see­ing a san­goma, but to rather en­cour­age them to see a doc­tor first. She be­lieves that by ed­u­cat­ing peo­ple about cancer in their own lan­guage and in a way that re­spects their cul­ture, it is more likely to en­cour­age them to see a pro­fes­sional.

There re­mains a stigma around cancer in African so­ci­ety, but through ed­u­ca­tion and open di­a­logue this can be over­come.

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