FUN WITH CANCER PATIENTS

Cancer. Those two little syllables could make me shiver, see sickness, bald-headedness and death. I was one month past my twentieth birthday and I had cancer...

Writing these words when I was diagnosed with testicular cancer in 2001, I had no idea I would be embarking on a more-than-decade-long mission to try to understand these six letters, and how they are discussed, used, abused, silenced and shouted in today’s public discourse. Despite the overabundance of charities, research campaigns, ribbons, bracelets and celebrity testimonials, still so little is known about what it actually means to have cancer. Fun with Cancer Patients was created to give a space for honest reflection, first for patients, then for medical staff, about the effects and realities of this illness. This exhibition and publication are our attempts to open that reflection to the public, all of whom have their own cancer story. As with any piece of art, a viewer’s interpretation is deeply affected by their own experience, especially true when the work is about cancer. We hope people will embrace their histories and contribute their own cancer stories as they really wish to tell them, not just how they think we want themto be heard.

The Fun with Cancer Patients exhibition features documentation of Actions that have already happened — one-off events meant to provide a fantastical solution to a recognisable problem or issue facing current patients. Each Action has been initiated and conceived by teenagers and young adults associated with the Birmingham Teenage Cancer Trust, and produced by the Fun with Cancer Patients team. The distance between the Actions and the exhibited objects asks viewers to examine their own critical distance from the word cancer — or if they have had the privilege of having any distance at all. Instead of asking for your sympathy, or pity, Fun with Cancer Patients asks for your intellectual and critical engagement around cancer which may help create a safer environment for cancer patients to thrive as thinking and feeling members of society.

There is much we can learn from the insight of the teenagers featured, if we engage in what they have to teach us without demanding they tell a story with a happy or inspiring ending. It’s not a cancer patient’s job to inspire

— having

cancer is enough of a full time job. But it’s our job to listen to what they have

to say and how they feel, even when those words and feelings may be inconvenient or difficult. And these words and feelings often are inconvenient, and difficult, as well as being real, funny, profound, profane, mundane, political, ridiculous, hilarious, frightening and thrilling... The fact they can be all of these things about cancer, well, that is inspiring indeed.

-Brian

Fun with Cancer Patients is conceived and devised by Brian Lobel.

Participant Patients: Adam Woods, Amy-Leigh French, Anie Hu, Anisa Begum, Ash Potts, Chelsey Dixon,

Chris Berns, Ellie Philpotts, George Rowland, Hannah Goulding, Jess Beedle, Lottie, Molly Evans, Will Newton, Will Smith, Wasim Mehmood.

Photography by Christa Holka, Video Documentation by Kate Rowles, Sound Design by Bobbie Gardner, Illustrations by Nako Okubo, Cancer Disco poster by Leon Bowers, Computer Program

me by Chipp Jansen, Closer Magazine Redesign by Steve Nice, Graphic Design by Cod

y Lee Barbour.

Produced by Fierce Festival on the occasion of Fierce Festival 2013.

Advisory Panel: Sarah Turley — Queen Elizabeth Hospital, Teenage Cancer Trust, Zoe Allton — Birmingham Children’s Hospital, Teenage Cancer Trust, Dr. Dave Hobin

— Birmingham Children’s Hospital, Laura Beacham RN — Queen Elizabeth Hospital, Dr. Sue Gessler — University College London Hospitals, Sarah Thomas — Queen Elizabeth Hospital.

Supported by Wellcome Trust, Fierce Festival, mac birmingham, University of Chichester.

On 11-12 April, a group of Birmingham based teenage

cancer patients from Birmingham Teenage Cancer Trust, their coordinators Sarah and Zoe, nurse Laura, and the Fun with Cancer Patients team, Brian, Christa and Kate met at Ackers Adventure in Birmingham to plan and to

share. Although many activitiesare

organised to introduce teenage cancer patients to their peers and to build friendships, the specific focus of the retreat was to investigate these teenagers’ expertise and talk through different aspects of their experience. Exploring cancer iconography, the language used around cancer, the biggest annoyances and momentary pleasures. Using various workshop techniques, the retreat provided a fertile ground for both focused and relaxed reflection. By the end of the retreat, we had decided on aspects of cancer that we would explore for the exhibition including: Senses — Action ITelling our Stories

/Answering Questions — Action II

Cancer Friends — Action IIIBingBong — Action IVWigglies

/Hickman Lines — Action V

Cancer Disco — Action VI

Two unrealised Actions were also recommended,

including one on Staring, and one on Mobility (how mobility changes radically from day-to-day). Fun with Cancer Patients is a starting point, not an endpoint, so we hope to find ways to realise these Actions in the future. Two additional Actions were added, including the commissioning of a piece of art made out of hair, and an Action that marks the fact that death had not been extensively discussed. Together, the documentation of these Actions makesup Fun with Cancer Patients.

For this Action, chefs and Fierce Artists Blanch & Shock cooked individual gourmet meals for each patient in the Young People’s Unit [YPU], some friends and family, and even some nurses. Patients were asked at 2pm what they wanted to eat, and what they were hungry for today. Their food was prepared for a 6pm dinner.

~ Zack ~Ribeye steak with triple-cooked chips,

peas and buttered chard.

~ John ~Ribeye steak with triple-cooked chips,

peas and buttered chard.

~ Anie ~Smoked haddock, prawn and salmon pie, with tarragon,

peas and buttered chard.

~ Pagan ~ Roast chicken tortilla wrap with romaine

lettuce and mayonnaise.

~ James ~Spiced roast chicken with triple-cooked chips,

peas and buttered chard.

~ Bal ~Handmade pizza with Isle of Wight tomatoes,

mozzarella, basil and roast chicken.

~ Habiba ~Handmade pizza with Isle of Wight tomatoes,

mozzarella and basil.

~ Everyone – including family, girlfriends, boyfriends,nieces, nephews, children, nurses & Fun with Cancer Patients team ~Salted chocolate brownie with a selection of strawberry

ice creams and British strawberries.

I discuss potential changes in weight with patients as they start out on their treatment regimen. I tell all patients to expect their chemotherapy to affect their experience with food, how it will taste, how they might not like the same foods as they did before chemo, and how feeling sick may affect their desire for food. I don’t focus on this as a ‘bad’ thing, and I emphasise the interventions we can do to help with nutrition.

Any patient who will be taking steroid medicine as part of their regimen, I explain the potential weight gain. For most of our teenage patients this seems to be more of an issue, so I make a point of emphasising this is a temporary effect. I don’t recommend any special dietary regimen as there is no proof of benefit. My simple message to patients is ‘eat what you want when you want’.

I would like us to be more flexible and accommodating for our teenagers regarding diet.I am aware of the huge success one unit experienced when they were able to provide a dedicated chef, who would cook for the young people in hospital as and when they wanted. If only we could bring Heston Blumenthal into our world...

-Dave

How did you know that you were sick?

What kind of cancer do you have?

What kind of treatment did you have?

What was your treatment like?

How was it when you found out?

How did your family deal with your cancer?

What happened to your hair?

How do you talk about your cancer experience?

Does having cancer as a teenager affect your love life?

Does your walking stick have a name?

What did you struggle with?

Will you get better? Will you get better? Will you get better? Will you get better?

Will you get better? Will you get better? Will you get better? Will you get better?

How did you know that you were sick?

What kind of cancer do you have?

What kind of treatment did you have?

What was your treatment like?

How was it when you found out?

How did your family deal with your cancer?

What happened to your hair?

How do you talk about your cancer experience?

Does having cancer as a teenager affect your love life?

Does your walking stick have a name?

What did you struggle with?

Will you get better? Will you get better? Will you get better? Will you get better?Will

Will you get better? Will you get better? Will you get better?

I’d rather people ask than didn’t ask. It can be quite annoying when you get asked the samequestion over and over, but you just get used to it in the end. My feelings go from ‘Oh, this is someone asking me a question and this is good’ to ‘This is quite annoying that I’m still getting asked the same questions’, but after a while this tails off into the everyday.

Whether I find something annoying or ok is really about the mood I’m in when they ask it. People often crack jokes about my walking stick. I remember going into a shop and someone asking ‘Where’s the sheep?’ like I’m a shepherd because I’ve got a walking stick. And I found that really offensive — I don’t know why, as it was quite funny looking back at it. And another time, I went to a restaurant and the guy said ‘I’m sorry, we don’t let weapons in here’ and I thought that was really funny at the time. One of the best ones I’d heard. But there wasn’t much of a difference between the two times, just what mood I was in when they asked it.

-Chris

Cancer has gone from the taboo that we don’t talk about it, to being something that we can all talk about, all the time. Patients often come under pressure — if they are in any social world at all — to tell every questioner about the chemotherapy, the procedures, etc etc etc... It can be so intrusive. It’s often hard for patients to feel that sometimes it’s ok tosay ‘No’. Just because someone asks something doesn’t mean that they have a right to an answer. It’s really a reversal of the normal etiquette, not to answer a direct question and we often have to find a form of words that works for each person to fend off these questions without feeling rude. I ask patients, ‘Look, if you had food poisoning, or an upset stomach, would you think everyone should know the quality of your vomiting, of your diarrhoea?’ Of course not, but because this thing is called cancer it suddenly becomes everyone’s business.

-Sue

A cancer friend is someone who looks out for you no matter what, and that stays close to you when all your other friends grow apart.

A cancer friend is important to me, more important than other friends because if something is wrong or they are feeling down its most likely more serious and important (as it could be life or death) than my other friends’ little dramas about boys, they also have a whole new level of understanding on a personal level about your illness and have a better idea of what to say to cheer you up.

A cancer friend is someone who in!uences your life, whether they’re still in it or not.

A cancer friend is someone who has seen all your imperfections, yet sees past all of them.

A cancer friend is someone you can talk to about any worries, related to cancer or not.

A cancer friend is someone who gives you the con"dence to be who you are.

A cancer friend is someone who understands what you’re going through completely, even after treatment.

A cancer friend is Will, Josh, Hannah, Stephen, Jess.

A cancer friend is someone who you share brand new experiences with.

A cancer friend is someone who helps you re!ect positively on your cancer experience.

A cancer friend is someone you can con"de in, no matter what.

When someone has cancer, there are people who turn out to be friends, and people who turn out not to be able to stay the course. And there is a huge disappointment with people who drop out from your life (people who you thought were very good friends who just couldn’t do it) as well as surprise, often, at those who do. As a patient, this process is about figuring out who has the capacity to take this on. There is a sense, with a Cancer Friend, that they have the ability to tolerate the enormity of cancer and the ability not to be horrified.

One of the things that can happen because of the pervasive ’Be Positive Be Positive Be Positive’ attitude around cancer is that it can become almost punitive. Insisting the patient always be positive can prevent anyone from ever talking about what’s really happening, or allow a friend to say how bloody awful is it that this cancer is happening. Often the push for positivity at any cost may not be about the patient, but about society’s inability to tolerate the enormity of what’s actually happening to another human being.

Teenagers as friends may have more of a capacity for tolerating or engaging with this kind of enormity, as they are still thinking about what really matters in life. Many adults have already got to the point where they no longer explore and question as they know what they believe in, whereas for young adults, everything mattersto them. Everything matters. So it may be that teenagers have more of a capacity to engage.

-Sue

A cancer friend is a friend For Life.

A cancer friend is someone who understands what you’re going through.

A cancer friend is someone who doesn’t necessarily live close to you, or who you don’t see often, but you can always pick up where you’ve left off, like no time has passed.

A cancer friend is not just a friend, but a member of your family.

A cancer friend is someone who, when you hangout with them, makes you forget for just that moment about the cancer.

A cancer friend to me is the best sort of friend to have, for the following reasons: - No pressure to look /feel good - Nobody gets judged - Everyone is in the same boat - Its really easy to talk to other people affected by cancer

A cancer friend is someone who gives you a shoulder to cry on (literally) when things go bad.

(A cancer friend is someone with whom you feel con"dent walking through central Birmingham in pink wigs! )

FREE BINGBONG-INSPIREDINFUSION MACHINE

DOWNLOADSwww.funwithcancerpatients.com

The BingBong is the sound of the alarm the drip machine makes whenever you need more chemo or meds or something’s wrong with the drip machine. The most annoying time the BingBong goes off has to be during the night. Sometimes you’re on the machine for 24 hours and usually it goes off every 1 - 3 hours. When you’re already really tired from chemo, operations, etc, you reallydon’t need this machine going BingBong throughout the night always waking you up. Of all the people who hear it — patients, nurses, family, friends — patients find it most annoying as we are constantly attached to this walking alarm that never shuts up. It also always goes off at the worst time, like when your favourite programme’s on, when you’re with friends,or whenyou’re sleeping.

It would be good to have the BingBong as a ringtone because it would be nice having that nostalgic sound that only you understand. I hated the sound when I was in hospital, but now as I don’t hear it that often, I like it. When I hear it I think of all the people I’ve met, all the fun times playing pool in TCT, getting to wear SpongeBob pyjamas all day (with no one saying a word), playing pranks on nurses and all the good times spent in hospital.

-George

It drives us mad. We hear it when we go home, we hear it in our sleep. That annoying sound needs to be there, as it lets us know when there’s a problem, of course. But then it’s busy and you hear one go off and you think ‘that’s not meant to go off now’ and you don’t want to leave it for too long, so you’re rushing around, trying to get to it because you know it’s so annoying for these patients with it right next to their ear. Potential problems include air in the drip, a block, an occlusion, or that the battery’s gone, or there’s a faulty drip... There are solutions for all of them, but some of them take a long time. When there is air down the line, you have to spend a long time flicking it up and out, but when the battery’s gone, I’m like ‘Oh, brilliant, plug it back in’ and then there’s that sorted. Yeah, they drive me nuts, some more than others. There are some that just.. argghhh!

-Laura

At the start, I couldn’t stand my Hickman line. I could never look at it and it would scare me.I don’t like the idea of having a clear dressing over it really, but it’s the hanging lumens that I find the real issue. The lumens are less easy to hide and even when you sleep, you’re constantly reminded of your illness. It’s getting better, but it’s quite obvious that itshouldn’t be there. Under clothes it looks weirdand makes you feel not-as-human as other people.There are two plastic wires hanging from my chest, so it’s not very ‘normal’. I couldn’t stand to tell people about it before because I felt it was too gross. I didn’t get many uncomfortablereactions, though, just that people felt it was hurting me. I was also worried for other people to see my line because I thought it would make them pity me. Seeing people in the public eye with a line would make such a difference. If people knew more about them, it would make me feel less ‘freakish’ about myself. Also, maybe people would be okay to approach me if they knew why I had a line in, rather than just stare at it and pity me. After Closer Magazine, I’d love to see them on models — Kate Moss, for example, someone that loads of young people love and hate. Or Justin Beiber.

-Anie

The Hickman line gets stuck in immediately after diagnosis and before chemotherapy starts, before someone really has a chance to think about it. The play specialist will have a doll with a line to demonstrate what it’s like, but it’s a doll-like cuddly toy. I always encourage another patient on the ward to show the new patient what it is like, to see it on flesh, in a body, on someone with the same shape, so that they can, in a way, relate. That seems to help a little, but it still is an alien being.

The lines come with positives and negatives. When you have cannula, you’re very restricted and can’t do anything as your hands or arms have needles. Suddenly, when you have a line, you are enabled to do things: but what are you going to do when you feel rubbish? We always stress that it’s discreet and you can wear what you want, but it’s still something hanging out of you.

To us, it’s normal, but to patients, everything needs to be reconsidered: Can I do this with a line? Can I do that with a line? It’s another stumbling block after all the other stumbling blocks that get put in your way with chemo, surgery and treatment. Although there are restrictions, there are plenty of things that patients can, in fact, do with the line.

-Zoe

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We know, or we think we know, that by getting young people together, they support each other well, and get comfort out of being able to say ‘Chemo’s crap’ and the listener knows that’s true. It’s not a sympathetic ‘I know I know’ from a mum, an auntie or nurse, but it’s someone who has actually sat there with chemo as well, and knows that it’s crap.

There are young people who will never come to an activity and that’s ok. You have your regulars, people who come to everything and fit their life around it, some who flit in and out, and some who come regularly and then stop when something changes — something in their personal life, or something in the group dynamic. If someone in our social group has passed away, or relapsed or is very unwell, that affects the dynamic of that whole group. A death or a relapse is quite intense because not only is it sad that they have died, but it’s scary because they died of something that affects the entire group. In this way, it’s a double whammy.

When we get a group together, it’s quite natural. People gravitate to people they have shared interests with, and we very much allow groups to run organically. We have rules in the gatherings, but we try to be non-clinical — the opposite of everything they’ve had previously. It’s not unprofessional, but non-professional — we’re trying to create that natural state rather than it being the hospital.

-Zoe

The Teenage Cancer Trust and our work more broadly, is about the holistic care of the young person who has gotten cancer, and at a time that is really difficult, whether you have cancer or not. By allowing a wider support network, these young people find individuals they can relate to — not understand because they don’t always completely understand each others’ stories — but can relate to each other at a time when many of their other friends drop out of the picture.

This peer support can be amazing, but it can alsobe incredibly difficult, because we are actuallyintroducing these young people to a whole hostof others who are experiencing different prognoses and life outlooks. With this, it bringsits own life difficulties. But I think it does open these conversations that are quite difficult to have — often the social group is where we talk about death and dying, in particular if we’ve lost a member of the social group. They become such a strong unit...

The peer support is about — I hate the word normalising — but it is normalising. Often our young people are given so many rules — ‘You can only do this’ ‘You can never do that’ — that theybecome petrified about what they will and will not do. With the social group, it’s about finding a safe way to reintegrate them into everyday activities, like going out to dinner or hanging out with some people they like.

-Sarah

I have always been fascinated by the ‘protective mechanisms’ that kick in when patients become palliative. On reflection, I very rarely use the words death or dying. I am more likely to use phrases such as ‘I am no longer able to make you better’ or ‘I am not able to do anything now to make your cancer go away’. If I speak with parents alone first, I always make it clear thatif the young person asks me a question, I willalways give an honest answer or response. I think the parents find this more worrying than the young people. I will always ask young people if ‘there is anything they would wish to say to me or ask me’ during consultations and I canperhaps only think of one occasion when I have been asked outright, by a young person ‘Am I dying?’ I am always convinced that the young people understand what is being said but never raise it in order to protect both themselves and their parents. On occasions I feel we do not address the ‘elephant in the room’ but most of the time, that is appropriate for that young person and their family.

-Dave

In the Treat Treat Treat mentality of these units there’s always a plan, there is always a What’s Next? And with very few young people there isn’t a What’s Next... It’s always so difficult. Sometimes medical teams think that stopping treatment removes all hope. We have very few people — I have been on this job five years — and I can probably count on one hand the amount of young people who have really embraced death and dying and have been really proactive with their death and dying process, with funerals and memory boxes. But I think, quite often, if a patient mentions it in front of family or a partner the response is always ‘But you’ll be ok’. And so they may feel scared to really go there.

Hospice care is often quite difficult as it is generally much older people. Often you have younger people come back here to die because this is where they feel safe. And even if they don’t verbalise it, they tell us in actions that they know that they are going to die, and want to be here around nurses they trust and doctors they know.

A lot of young people think about legacy and what they are leaving behind. We talk about grief and loss a lot but we don’t talk about death. We talk about ‘I’m never going to be able to do this... or that...’ and this is probably them coming to terms with their dying, without ever verbalising it.

-Sarah

The featured image was created as part of a reflective group activity, part of the Fun with Cancer Patients Retreat, April 2013.

The word cancer instantly conjures up a million images — hairloss, hospital beds, gravestones, vomit, bandanas, etc — all of which have the power to silence, to shock, to sadden, and to worry. But we can’t just let them.

What does cancer look like to you? What could it look like? And how can we change cancer from being something which silences us to something which gets us talking?