Be your own medical advocate?

Melly, 53, knew very little about cancer before her diagnosis – other than at late stages it is a terminal disease, treatable but not curable – but more frightening than her diagnosis and upcoming surgery was the general attitude by her treating team that she was capable of making an informed decision about ongoing treatments by reading a few pamphlets.

“I was a basket case and so was my husband,” sighs Melly. “The pamphlets were designed for early stage cancer – not a late stage like I had - and I was disgusted at how these pamphlets almost made cancer seem like a normal sort of thing to have.”

“Well, it may be to the medical profession, but it certainly isn’t for me.”

“I know that cancer is now being treated like a chronic disease – similar to diabetes,” says Melly, “but having already slipped through the cracks by naively believing that if I had cancer it would be picked up early by regular check-ups, I imagined all sorts of terrible things happening to me if I continued to leave things in the hands of the experts.”

“Just about everyone I came across after my cancer diagnosis has advised me to be my own advocate and to challenge the doctors at every move,” says Melly, “but how on earth can we be expected to educate ourselves to the same level as the experts in the limited time we have before a life-changing decision has to be made?”

“There are some incredibly knowledgeable members of my support group who understand medical terminology and have the research skills necessary to sift the wheat from the chaff,” says Melly, “but even they admit at times that they can’t answer every desperate question we ask them.”

“I have never been interested in medical matters, and my husband is even more of an ostrich than I am,” sighs Melly. “I try very hard to understand treatments and prognoses -if I do that, or something else, which has better prospects – but my eyes glaze over when I try to plough through all the articles and personal stories about cancer.”

“Frankly, if I were to rely on myself for advocacy I’d have a fool for a client,” sighs Melly. “I know that doctors are human and mistakes get made – which is why I was diagnosed so late in the day – but I really don’t want to spend what remains of my life being suspicious of what my doctors are doing and pretending I’m a lawyer who knows everything about cancer.”

“I’ve decided to follow my gut,” says Melly. “I feel sometimes that even doctors throw out their text books and follow their gut about things. Why not me, too?”