Bringing Medicine to life

01 Jul 2014

Bringing medicine to life is a unique British Medical Research Council (MRC) project inspired by the MRC Clinical Trials Unit in collaboration with Dr Martha Perisoglou in the University College Hospital, London.

The Project encourages patients taking part in clinical trials to communicate their feelings and experiences through art.

The aim of the project is not only to help patients come to terms with their disease but also to make the public aware of the importance of clinical trials from the patients' perspectives.

Dr Lizzie Burns, a research scientist and talented artist, has visited EURAMOS patients, working with them to create artwork based on their experiences of being ill, taking part in trials and hopes for the future.

With thanks to the inspiring people who took part in this art project.

We hope you will enjoy the exhibition and take some time to look and read.

Laura, Age 15

Laura is on chemotherapy but her leg may need to be amputated to remove the tumour. She is taking pain killers and finds it too difficult to concentrate on drawing. We talk about her experiences.

“I found out in A+E as I got so fed up with the pain for about 6 months. My grandparents took me as my parents were away on holiday. We went to A+E and we waited there for 8 hours, they felt my knee but didn’t know what it was so they did an X-ray. They found my knee to be abnormal and that it was probably cancer, but it was the way he blurted it out when they weren’t even sure. They know it is now but what if it wasn’t? When you find out something like that you just want someone to comfort you.”

“I had a biopsy and went home but I broke my leg and was taken to hospital. I had a cast put on but no one would believe me that the cast was really digging into me. When they finally listened they found there was a massive indentation where the tumour was getting bigger. I am positive but it’s difficult to be with no good news.”

“It has made me appreciate things more, I can’t say how, but it has. Like my hair for instance because I had to have my hair perfect. The last photo I had taken when I had hair I thought it looked really ugly but now I look back it looked really nice. I really appreciate my hair now and it doesn’t matter if it doesn’t look 100% perfect.”

“I want to live”

Bhavin, Age 27

“I have mixed feelings right now because the doctor has to cut my leg and at the same time my wife is expecting her first baby.”

“When I was told my cancer was very rare, I told him I was never in a lucky draw and was never given a prize, but this was a surprise.”

“I was explained how EURAMOS works and how it will help in the future. It’s a good cause so I just asked it won’t effect my medicine. My parents were a bit worried but a friend who is a doctor told them it was a good thing and not to worry about it at all.”

Bhavin draws a picture of his legs. He explains that the doctors will need to cut out the tumour from his upper right femur. The picture shows where 6 inches of bone will be removed and replaced by a metal implant.

"If it was higher up I would have been in trouble, they would have to replace the hip and it would be a life-long problem of replacing it every 15 years."

At the bottom of the drawing he writes:-

"Note:-

this is a curable disease with help of chemotherapy and surgery.

Motto:-

just take it as it comes."

Bhavin then creates a painting to celebrate the coming of the indu Festival of Diwali.

He explains, “the picture symbolises bringing light, colour, happiness and prosperity to your life. In India each and every house is decorated with these candles. There would be lots of food and wherever you go you definitely have to eat something.”

“I have a lot of hope for the future.”

Omar, Age 8

"I am Omar and enjoyed this art session"

Simon, Age 18

Simon has finished his first round of chemo and is suffering from painful mouth ulcers following the methotrexate treatment. He is finding it difficult to talk or think about his experiences but wanted to create an abstract piece using pastels. “My friends don’t know, I don’t really want them to know, I’ve got too much to deal with.”

“My knee doesn’t hurt now but everything else does. I’ve traded one pain for another. I’d rather have my knee back.”

“As soon as we arrived they mentioned the trial straight away. He had to make the decision as to whether he would sign up for it or not. I think that in some way if the treatment in future can be improved and made better for other patients then it’s something worth doing.”

- Simon’s mum

Meg, Age 12

“I’ve drawn my leg before when it was normal, and then when it had the tumour in there, and it had stretched my leg. It felt really, really painful. I went to the doctor and they gave me anti-inflammatories and they weren’t working so my mum took me to the doctor again.”

A photo on her X-ray on her mum’s mobile phone

“They X-rayed me and said I had a tumour in my knee.”

“This is a picture of the scar where they took the tumour out in an operation.”

“They then put in a metal implant, a bionic implant. When I grow I’ll go into a magnetic field and it lengthens it. You can actually hear it. It feels fine.”

A few months has passed and now Meg is on her final round of chemotherapy but remains in hospital after slipping and breaking her leg. She starts a self-portrait but soon falls asleep in the afternoon due to the painkillers. I chat with her mum while Meg sleeps.

“She broke her ankle after falling over. She was in plaster up to her knee and came out of that 3 or 4 weeks ago. She was having her last round of chemo and then she had a kidney problem and couldn’t do this lot of chemo. This should have been 2 ½ weeks ago and over and done by now. Her kidneys are ok now thankfully so she came in and now she’s fallen over and done her hip in!

Her bones are very soft and practically see through like an old lady. The tiniest little knock is all that’s needed. We’ll be in hospital for a few more weeks. But it’s our last lot of chemo and then we’ve got more tests for her lung” - Meg’s mum

“On this morphine she gets absolutely whacked out bless her. In the morning she’s quite chirpy but by the afternoon it’s built up and that’s it.”

“She’s got a little way to go but we’re getting there.”

Sam, Age 17

Sam is on her sixth round of chemotherapy and hasn’t done any art for at least 5 years. She has lots of ideas for a picture about herself and her experiences. She talks while she works, explaining “this is my anger”. She hasn’t been able to find a way of venting her feelings and explains “I’d like to go out with my friends.”

"I got told yesterday about the trial. I just thought why not basically. I made the decision myself."

"My life now". Sam explains:-

When I'm in hospital wearing my red pyjamas and gold necklace with no hair.

My scar.

Me being connected to the drip stand (it's not coloured as it's not very interesting).

My brother's car because I want to get back in it when I can bend my leg again.

My mobile phone, I can't live without it.

A picture of anger.

Syed, (Age 34)

My cancer story...

“Hello I am Syed and I’m depicting what happened to me and all the events which led up to my cancer and the diagnosis of my cancer.”

“I went to my doctor and that’s me being told by my doctor there’s no problem. There’s me walking, and my leg really hurt , I fell over and the ambulance came. I was conscious but in a lot of pain.

And then ‘you have cancer’. Actually I took it really well. They asked me do you have any questions and all I said was how are you going to fix me?

I didn’t ask anything else like am I going to die, I just asked what’s going to happen. The worst case scenario is you might die, the second best is they might chop your leg off and the best scenario is that you’ll have a replacement leg and the chemo will start.

Hopefully fingers crossed, they are telling me I’ll have a replacement leg, should be a good one so I’m quite happy. I might come out of hospital saying ‘no leg’ but it doesn’t matter, it’s better than being dead.”

“When I came here the doctor said we’re doing this EURAMOS trial on people with bone tumours. He gave me a couple of days to think about it.”

“My uncle who is a doctor told me to go for it. He said that it’s a good trial to go on. I said alright, nothing to lose and plus if it helps anyone, benefits anyone in the future, you can’t be selfish all your life. You can give back something to society.

The other way I look at is my parents are immigrants and there are countries out there you wouldn’t have a chance, you’d die within a few years. As I said I’m a very positive person and I like to look at things in a very positive light”.

“In everything I do I’m very positive, and very competitive. Everything I do my business, my work, and when I play football I like to win and even with this cancer I want to win, I don’t want to let it get me down, get me depressed and ultimately as I said if I don’t make it I don’t make it but that’s just life.

You never know tomorrow when I leave hospital I could get hit by a bus and it all could be a waste of time but it’s not, while you’re living you try things.”

Charlie, Age 5

Charlie is just 5 and starting his first round of chemotherapy. He is angry and upset and finds comfort in his computer games, toys and being with his mum.

She explains:-

“His thoughts are why did I break my leg, why have I fallen over, why have I got the tumour? And of course he’s cross, he’s a cross little five year old and in the main he deals with it really well. He gets cross with people poking him and prodding him and why wouldn’t he?”

“We’re only deciding to take part in the trial up to surgery at this moment. We thought it was a good thing and we are interested in participating. We’ll see how we feel and how he is coping. It’s a long trial and it could go on for quite a few years. He’s only five, he’s only little so we’re taking that into consideration and we have to decide it we want the extra two years”.

Shane, Age 23

Walking on my mind

“Shows me learning to walk and my feelings. This is the main thing on my mind.”

Susanna, Age 10

My Brother's Tuna

The reason I named this piece of art

MY BROTHER'S TUNA

Is because he said to my mum

"Why have I got a fish in my leg?"

The reason for this is because he is only five years old

And he doesn't understand what a tumour is.

We hope you enjoyed the exhibition.

For more information about art and health get in touch with Dr Lizzie Burns.

E-mail: boz_burns@yahoo.co.uk

With thanks to the inspiring people who took part in this art project and to the MRC Clinical Trials Unit and EURAMOS 1 Trial.