This is the second in a series related to my cancer treatment. The aim is to talk about the personal experience of illness in a broadly analytical way. The first posting looked at blood, and how its condition affects our mental state.
This time I am focusing on patienthood. When you have a serious illness, being a patient is a major occupation, and not just because of the time taken up by medical matters – although, god knows your diary commitments, all of them once Very Important, go through a rapid reclassification after diagnosis. Patienthood also involves, potentially, a change in one’s entire take on life.
One reason is that you receive massive exposure to the way doctors think, and they think in a very particular way. This is partly because of their training and specialist knowledge, but it is also simply because medicine is what they do for a living.
The things that make doctors happy are not always the things that the patient thinks of. When I was first diagnosed, doctors were happy that my tumour tested strongly for hormone receptors, because that meant they could throw an extra treatment at it. I was not happy, because I had a freaking tumour.
Doctors think in general categories rather than individual narratives. Naturally they wish the patient well, but other things are driving them. They want a good outcome – as measured against others in their field – so that their own reputation, and that of their hospital, is enhanced. They value skill and craftsmanship. I do not begrudge this. When the ultrasound specialist first spotted my tumour, after another hospital had missed it entirely, a flash of professional pride passed across her face. At one level, she was pleased. And why wouldn’t she be?
It is not just doctors who think a certain way, but medical establishments in general. When you become a patient, you submit to the system with both your mind and body. There has to be a system, of course, or nothing would get done, but when the system is deficient you end up being there for their benefit, rather than the other way around. It is a fine judgment to make, when to submit and when to challenge the system.
The everyday meaning of patient is ‘a person receiving medical treatment’ but as one person commented in a previous posting, its roots are in the Latin pati, to suffer. A patient is therefore also defined as someone who ’suffers and endures the actions of others’. If you are a patient patient, you do it without complaint.
The suffering results not just from surgery and medication, but from all kinds of smaller, regular invasions. My own bugbear is the canula: a piece of plumbing inserted into the vein which provides a port into the body’s interior. The insertion is painful and if the first attempt does not succeed, results in multiple bruises. It has an effect on the mind as well as body: the canula harpoons the patient’s private space and signals clearly to the world that one is enduring the actions of others.
There is a lot of information that medical people don’t think to volunteer, and if you don’t ask the right question, you may not get the answer. But you need information to know what questions to ask. So you become informed, using terms unimagined a short time ago. You start to make the same distinctions and comparisons as specialists.
The main change in outlook as a patient is the attitude to risk. I will look at this in the next posting of the series. Meanwhile, feedback is very welcome.




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