September 20, 2013

The Guerilla Pub Quiz

These blog posts show some of the actions from the “Fun with Cancer Patients” show. Each has a link to the video and an accompanying text. They can be seen on Brian Lobel’s website where they were originally posted online.

Click image for video

Exhibition text

Action 2: The Guerilla Pub Quiz – Object for exhibition – Video on monitor

Context provided by Dr. Sue Gessler:

There’s something about looking at breasts. You learn to look and not to look and you learn that there are ways of looking at somebody’s body that are not unacceptable. There are ways that you manage to look at something while not looking at it. But there’s the secondary issue, which is desiring to know what the breast reconstruction looks like. Breast cancer makes people into an audience of small children who want to stare. Here, Laura is giving them permission to stare. In ordinary walking – walking down the street – you glance at someone, and then you look away. If anyone’s got something that’s got something unusual, suddenly your eyes go back to it. If you’re that person, you see heads turning all the time which is actually, largely speaking, unconscious. This inability to legislate people’s reactions is an essential problem someone with stigma deals with. The breast thing is very important and separates breast cancer patients from women with other cancers. We’re talking about things which make women women. For many breast cancer patients – you have this sense of a part of you, which clearly identify you as a woman. Compared with gynaecological cancer patients who are dealing with their vagina, their cervix, their womb, things which are intrinsically ‘woman’ but are hidden, they often feel something very important has been taken away and nobody can see it. This breast thing is so upfront, and there is this sense that people can look, but what about these other women?

And about Chemo Brain, from Dr. Gessler: Chemo Brain is really really interesting because there’s been a long history of patients complaining about it and people rather ignoring it because it’s not ‘sinister’. Everything to do with cancer is ignored if it’s not about the illness itself. These things were seen as small problems on the way. After chemotherapy, there is definitely a loss in concentration. Whether this actually reflects a change in capacity, I would need to check. I think the problem is that even after you’re diagnosed, you’re in this trauma state – you’re dominated by other thoughts… your processing capacity of just taking in new information, working memory, all of those things, is reduced because so much of your computing capacity is taken up just processing what’s around you ‘will I die?’ ‘what will i do?’ all of that. There is an argument that one of the problems is the processing capacity. I do have patients who say they find it very hard to get back into reading books, concentrating – but they have been through a trauma. I don’t know if it’s drugs? Or trauma? Or both? With cancer, your timetables change, your food regime changes, your sleep has changed… It could be a bit of everything coming together.

Additional statement from Dr. Anne Lanceley:
I’ve been caring for people with cancer for 30 years and only recently heard the term Chemo Brain. I think it’s generated by people with cancer talking to each other. It’s a cancer-sufferers or -survivors terminology which is not a medical language. It seems empowering that it comes from the grassroots and not that it originates from a doctor. Once patients have the term, the label Chemo Brain, it makes sense of a lot of their experience. Just as the cancer diagnosis, in a way, makes sense of a lot of the symptoms which have lead up to diagnosis. For many, diagnosis is a relief. Similarly, by saying ‘Oh it’s Chemo Brain’ – behaviours are allowed whose causes were previously unknown. With cancer, you can’t trust your body, you can’t trust your memory. In a way, Chemo Brain is like a medical term for disillusion – a term for the overall loss associated with cancer.
And on how chemotherapy causes trauma: Having chemotherapy causes a trauma because of the process your body experiences in which something very poisonous is being put into your bloodstream. The very action runs counter to one’s previous experience, in that taking things into our body, such as food, is usually a pleasurable action. Psychodynamically, to put poison into our body is very horrible and ugly. It affects bodies and psyches in ways that are quite beyond many people’s capacities. When people get ill, they regress and the body’s primitive functions are reawakened. If someone is physically ill, their body is touched, turned over and handled in a way that they have not experienced since when they were a baby and all of that is very traumatising. As a nurse, if I can hold their head than I feel pleased that I can do that for people. But it’s not an easy thing for many people to accept. It’s a hard thing for people to feel so vulnerable. Most of what people with cancer experience they experience on their own. They wake up and they are sick and they go to the toilet on their own. A lot of what the person has to experience is unsharable. Others can never know what your pain is like. It’s not my stomach ache, it’s your stomach ache. Chemo Brain too, is unsharable. It’s tantalizing to want to know what someone’s experience is, but it’s impossible. You try to understand what someone’s abdominal pain is, for instance, but you just don’t know.