It may take some time before you feel sufficiently at ease in a hospital environment to take full advantage of the knowledge and expertise of the medical team treating you. A sense that events are completely beyond your control – and knowledge – is a common reaction, and it is easy to become very passive as a patient. For many men, this is an alien sensation and all the more difficult to deal with as a result. Most of us are accustomed to a regular routine in which we are largely in control of most aspects of our life, be it in a job or home life. It can be particularly disturbing to find that your life has been turned upside down by your cancer diagnosis, and that you have lost the security of your ‘normal’ life, even if it had its own problems and sources of stress.
Developing the desire and the confidence to talk to doctors will take time, especially if, like many people, you feel slightly in awe of them or not sufficiently comfortable to talk naturally to them. First you have to want to talk and to ask questions. Then you have to get used to having conversations which do not necessarily tell you what you want to hear. If there is one doctor who you find more sympathetic and easier to talk to than the others involved in your treatment, you might start by talking to him or her. You may also need to work out (or ask!) which staff are most involved with your treatment and care and are therefore likely to be best informed about your particular situation.
As in any other aspect of life or work, some medical practitioners are easier to talk to than others. Do not be put off if a doctor does not appear particularly forthcoming and communicative: it may be that they are trying to judge just how much information you would like to be given or are able to absorb rather than simply bombarding you with medical jargon. The medical terms they use are likely to be unfamiliar at first, and it may be some time before you are fully conversant with them. Don’t be afraid to ask for more explanation, or for information to be repeated if you have not fully understood the first time. A glossary of some of the terms you may encounter is included at the end of the book.
Inevitably, you will think of important questions between consultations or hospital visits and it is very easy to forget them when you are face to face with your doctor. You will, of course, remember them as soon as your meeting is over! To avoid this problem, you may find it helpful to make a written note of your questions, and also of any problems which you experience between hospital visits or treatments. For example, if you are experiencing new or different pain, then your doctors may be able to prescribe alternative medication to combat this. (Obviously, if you are suffering serious pain then you should contact your doctor or hospital straight away.) Similarly, if you are having difficulty maintaining a reasonable diet or eating sufficient in quantity, it is important to let your doctor know as hospital dieticians may be able to offer you advice about boosting your diet. Some people find that a small notebook is easier than scraps of paper (which can easily get lost) for writing down short notes to use as an aide-memoire.
After my initial diagnosis, we never attended another consultation or meeting without a notebook and a list of questions. Helen, my partner, carried this notebook with her everywhere and Volume One soon filled with the details of test results, planned treatment, progress of treatment, changes in treatment – in fact, all the factual information passed on to us. We wrote down queries between hospital visits or as they occurred to us while I was in hospital, and often ran through our ‘agenda’ in the car on our way to consultations. In this sense, I suppose we treated them as we would a business meeting. It was also a tremendous help when we were discussing progress together or with, for example, my parents, because we always had something concrete to refer to.
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