|The Pros and Cons|
|In my opinion having information on my disease means knowing all there is to know about the illness. Knowing what are the pros and cons: what you can do after the operation, how my life and my eating habits will change; and what the effects will be of therapy. Knowing everything – no. Knowing everything would hurt you. But knowing the most important things is indispensable.|
|The Doctor's Round|
Take the Doctor's Rounds in the morning when they tell us how the tests went or they sum up to that moment. In that time, I need information; but often this 'round' is characterized by a Hermetic language. I, at least, understand a little, thanks to my scientific background. Then they are extremely laconic when it comes to the outcome of a test that could determine a change of therapy because the result is less positive than expected. So I would say that not only do more things need to be said, but things need to be explained in more detail so that they can perhaps reassure the patient as to why such and such a test did not go so well.
But in a few words they tell you that the previous therapy did not have a great effect, that the results of the last exam showed a lack in efficacy, and so therapy must be changed.
Not long ago, after six months of being cured, they told me that this kind of therapy improved my cancer by 40%. They told me this was an extremely positive result because 1.) I had been getting worse and so the tendency was reversed. And 2.) for them, 40% was a lot; I was very distraught because I had thought that after six months of very heavy therapy, 40% for me was very little. Therefore not only did they not obtain the response they" desired" from me in communicating the result, but I was thinking that another 6 months of therapy was going to be necessary.
They communicated this to me with satisfaction; but considering how much I had suffered up until that moment and considering how long the therapy took, I thought the result was poor. From their medical point of view probably my observation was seen as unreasonable. What for them was a good result lost all meaning and became demoralizing for me when it reached me as simply a number.
|The idea of calling a doctor for a response in terms of percentages is not the kind of answer I would like. Yes, I would like to know I had lost about half the hair on my head; or that in a certain percentage of cases the stomach resumes its normal functions with great difficulties which need to be progressively overcome. This way of answering I consider to be fully satisfactory.|
|"He/she told me straight away: 'In 80% of cases, these are things that cure.... You are in the other 20%. This means that you are unlucky...."'.|