Grave memories 4 – mouth cancer

Eva had been complaining of pain in the mouth for months. The pain simply did not go away. I could see nothing, nor could Eva, when she used an intricate series of mirrors. Our family doctor sent Eva to the ENT department of the hospital, but the doctors could see nothing, and so fobbed us off with the comment “There’s nothing wrong” and similar. But we went back, and, after some badgering, they did some tests – negative. “There is really nothing wrong.”

Eva was getting exasperated, and finally one doctor said, “Look, we’ve done all the tests and there is nothing, I repeat nothing wrong.” That made Eva burst into tears. Could they not see she was in pain? The doctor was impassive, and unyielding. Eva said, “We had to ask for the tests. You actually proposed nothing!” The argument got heated, and we eventually stormed out and left the hospital, but not without first going to patient services and lodging a complaint about the manner in which Eva was treated.

It’s difficult now to recall the anger and frustration we voiced at home. Our complaint at the hospital led nowhere. And Eva’s pain persisted. We called a colleague at a Rotterdam hospital, and arranged a second opinion there. The attitude was quite different: understanding and explanatory. Moreover, after various tests (this time proposed by the specialist), the ENT specialist raised the question of cancer.

Cancer had of course been in our minds, but somehow we dared not ask. The Rotterdam specialist explained how cancer could arise in the mouth and throat, and why, when the tumour might be very tiny and invisible, the doctor could not see it. He explained how it could be pointless to take a biospy if you didn’t know precisely the place you needed to take it from. You could take a sample millimetres away from the true point, and the results could be negative.

The Rotterdam doctor gave us useful advice about how to proceed if the pain continued. The encounter both raised our anxiety about what might be, but also calmed us down by providing us with the necessary education, questions, and a plan of approach for the future. Why had the inconsiderate doctor back home not explained the situation and suggested we return in 3-4 months? The possibility that Eva had cancer must have crossed his mind too: he could have explained.

Our next visits to the local hospital generated a change: this time we were seen by the professor. We learned that the inconsiderate doctor had gone, as had another similar one. Clearly there was a change in the approach to patients. And then we heard the bad news. “I’m sorry, you have a problem. We have found a suspicious growth.” Tests proved positive. Then the whole treatment process was ramped up. Operation, followed by radiotherapy. Chemotherapy was proposed, but then rejected as an option because of Eva’s pancreatitis and her earlier splenectomy. Eva was relieved about not having to go through the chemo: she had spoken with several co-sufferers about the side-effects and felt she could not have coped.

Eva began her radiotherapy coincidentally on the same day I was in hospital for a minor op. She was more help to me than I was to her. She took the course of radiotherapy easily, at least initially. However, after the half-way point in the 35 sessions, she began to be suffering from burned skin on her neck. That entailed pasting a thick layer of protective humidifying cream all over her neck.

But she recovered, and at all the follow-up check-ups she remained in the clear. “Should I say I have cancer, or I’ve had cancer?” she asked the radio-oncologist two and a half years later. “You have had cancer,” he replied, encouragingly. Little did we suspect that at the very next check-up the cancer would be back.

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