Fun with Cancer Patients

Fun. With. Cancer. Patients. A Wellcome Trust Arts Award R&D Project

From January 2009 until September 2010, Fun With Cancer Patients was a Research & Development project with funding provided by a Wellcome Trust Small Arts Award. During this time, Brian oversaw the creation of the Fun With Cancer Patients website designed by Nako Okubo and Chipp Jansen. To go to the official website, click here.The website facilitated the remote participation of hundreds of people who used the interactive canvas technology to create imaginary ACTIONS using cancer iconography, accessed from their own computers. Brian Lobel also facilitated and executed four ACTIONS by two different patient participants, Laura and Tansy. These four ACTIONS were documented by Christa Holka and transformed into discreet art objects which comprise 4 (of the eventual 18 objects) which will make up Fun With Cancer Patients. During the Research & Development phase, Dr. Gessler and Dr. Lanceley were also brought on board as advisors to the project, responsible for contextualising the ACTIONS and evaluating the project for its medical and psychosocial relevance. Included here are two examples of the ACTIONS. An additional ACTION and submitted canvases from the FWCP website are available on Brian’s DVD: CANCER CANCER CANCER CANCER CANCER.

Action 1 (Above): Tommyknockers, Tommyknockers – Object for Exhibition: 5.5minute video projection of photographs by Christa Holka, with sound design by Jan Mertens

Context provided by Dr. Sue Gessler (clinical psychologist):
‘Surgery’, ‘Recovery’, ‘Procedure’, ‘Negative’… What’s going on with the language is that you’ve got words which are normally so neutral and they suddenly become charged. Some words have an ordinary lay meaning but have an exact meaning for medics which may be quite different. A classic one is ‘Progress’. The word ‘Progress’ is normally quite good in the outside world. When a doctor says that your disease is progressing, you think “Oh Great!” whereas Progressive Disease means that the disease has progressed during treatment – that it has continued growing while we’ve been giving chemotherapy. Same with positive and negative. Usually positive is a positive thing, and negative a negative thing, but not so in the case of diagnosis. An ordinary word is taken and given an exact meaning in their world, and it is pulled around willy-nilly for you, the patient. Do you need to give up your internal mental and linguistic structure in order to be able to relate to what the doctor is saying? Do you need to hand over the whole of your mind? Do you have to be a cancer expert? What happens to your personal understanding of language when you learn to speak Cancer?

And about cancer in relation to Trauma/PTSD Model, from Dr. Gessler: With trauma, words stop having their symbolic meaning. The word trauma comes from a piercing through armour – it means that something gets straight to your core. One of the things that’s really odd about cancer is that seemingly-symbolic words become literal things. For most people, cancer comes up symptom-free. You go in with something worrying and then this doctor says these words to you and those words are radiotherapy, surgery, chemotherapy. Suddenly there are these words – for which you previously have no referent – which become things inside you doing terrible things… Here, Laura is taking back words. She is saying they are just words, and though they have been very painful, they can go back into thin air. She is allowing herself, simultaneously, to get a sense of self back by reclaiming the boundaries around herself and rebuilding her armour and defences. Everyone wants to go back to how they were before, and that’s the disaster. It’s never going to go back. Most of our generation don’t believe that anything bad will happen to them, ever. With cancer, fantasies about omnipotence and fantasies about immortality are thrown. Once you know there can be situations where one is forced to leave their comfortable life, you can’t un-know that.

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.