Health & Care Futures
Through the patient's eyes

Health & Care Futures blog: October 2022

Through the patient eyes: Patient-doctor relationship & the healing power of art in cancer

Dr Ioanna Nixon, Principal Knowledge Exchange Fellow in the Department of Management Science and Clinical Oncologist at the Beatson West of Scotland Cancer Centre, meets with her former patient, Andrew Crummy, to talk about his cancer journey, what helped his resilience and the creation of the cancer tapestry. 

Dr Ioanna Nixon

Hello Andrew, how would you like to introduce yourself?

Most people know me through the design behind the Great Tapestry of Scotland. When I met you was in 2017 when I was diagnosed with throat cancer.

The way I recall the first time we met is going into a room, with my wife, Carmel, beside me ready to take notes with a pen and paper. My memory of the room was there were a lot of people in the room, but Carmel assures me there weren’t and as this information was imparted to me by one of the doctors, I remember hearing the diagnosis and the treatment, including all the things that could go wrong.

Eventually, I saw a smiley face looking at me, in a calm and compassionate fashion; this was your face, and you took me through the plan. What treatment would involve. Within about one minute or even 30 seconds of that information being shared, partly because I am dyslexic, I stopped listening. In my head all that was playing was 'I have cancer. Am I going to survive this?', whereas in fact, what you were saying to me was 'there is light at the end of the tunnel' and that treatment stands excellent chances of cure.

I suppose this is a reflection of how any lane person feels about having been diagnosed with cancer, as the first thought is 'will I survive this?'. So, it took a while to sink in what was said to me. By the time we got the bus from the hospital to my brother’s house, I was really upset and I remember me crying. I made a painting reflecting my thoughts and feelings after this consultation. I am now surprised to see the warm and vivid cheerful colours I used in such a dark period. Your words 'there is light at the end of the tunnel' capture my own thoughts.

Thinking about that period, as cancer is a devastating diagnosis, a life-changing disease, do you think we, humans are ever prepared for news like that?

I don’t think I was prepared for this news. No. It is also hard to admit you have a disease. Once I knew however what the treatment is, what would happen, things became much better. Having clarity.

The worst period was the two months waiting for a diagnosis. Sitting in the house by myself as my kids were at school and would sit and wait in the morning, going into this dark hole. That wasn’t a good place to be at all. But once I knew what was going to happen and there was a plan, things got better. The hardest bit was telling my kids when they were back from school that I had cancer. But once the plan was put in front of me, I became more resilient and I found myself being able to cope with everything quite well.

I remember after my first chemotherapy, I was at home and looked at my wife and said 'I am amazed I haven’t gotten really depressed with all this' and she responded 'no, you haven’t'. I tried to think positive and have a positive attitude despite adversity.

Another big thing for me was how to occupy my time while being an inpatient for five days for my chemotherapy. So I went and bought an iPad to draw and when I went into hospital I started capturing everything - not using the ipad though, using a pen and paper. I started to create a visual memory of what was happening. My art helped me get through this.

In the first week, you were doing your ward round in the morning and you noticed I was drawing. You told me you draw too and you will bring your sketches to me. In the back of my head I thought 'she won’t come back with her drawings, she is trying to be nice to me'. But on the following day you came back with these other doctors behind you and you showed me your drawings. I remember looking at the people behind you, looking 'why is she doing this? Why is she going so out of her way?', as you had no obligation to do this. I was so impressed by that. Your act just humanised care for me. That was a big step forward. Seeing me as an individual, not a disease. This is where the Cancer Tapestry started from.

It is also hard to admit you have a disease. Once I knew however what the treatment is, what would happen, things became much better.

Can you tell us what the cancer tapestry is?

Rod Mountain, EBT surgeon from Dundee, contacted me when I was having my first chemotherapy. I remember him saying, 'when you get better you should do a tapestry on cancer'. But the combination of Rod contacting me with this idea and you and everyone in the ward being so caring and compassionate, you were the basis of the cancer tapestry.

By that time I had done the Great Tapestry of Scotland and I was beginning to design other tapestries. But that night, I thought this is a way I can give something back. Actually, I am in a position where I could actually contribute positively and help others by creating a tapestry where people can share their stories and understand more around the science and treatments for cancer.

I thought this could really work. So, after completion of my treatment and while on follow up, you invited me to talk about my experience in an event for patients and carers on resilience. When I showed patients and carers my sketches and shared the idea of the cancer tapestry, people were so supportive and enthusiastic about this. I put it on Facebook and within a few hours, over 300 people volunteered to support. Great start when it was announced. I knew then the cancer tapestry was happening. Jeanne Freeman, who at the time was Health Secretary, was very supportive of it and added the first stitch on 4 February 2018.

The first panel was completed by Heather Swinson, who was going through breast cancer treatment at that time. Her daughter, who lives close to me asked me, if I had a project for her mum to take her mind off cancer. I asked Heather to lead on the first panel and she was incredible. The first panel is about 'Cancer', an introduction to this disease, which is now completed. Second panel is now completed and is about 'caring'. Another nearly finished panel is in Dundee and about 'science' behind cancer.

The panel on 'caring' has a mother hugging her child. When I was told I had cancer I hugged my beloved ones. My daughter, my son, my wife. And I cried.

The first pillars of the cancer tapestry is education around cancer, treatment evolution. The other one is the human side, the caring side, which to me is the more interesting side. To tell the human stories. What it means, how they were impacted, what is the impact of cancer on society. Cancer is a common disease. One out of two get it, so every family will have a story about cancer.

An idea is to capture some of these stories in the cancer tapestry. We have these small 10 cm squares around and inside the panels where people are invited to tell their own story. What is so interesting is all interpreted with bright colours, not dark. Beautiful images of flowers, birds. Not the dark and depressing images, which I find very interesting. But underneath these pretty images there are very dark and difficult stories. It will highlight what people who deal with cancer are dealing with. That’s what you in the NHS do.

Taking you back to your own journey, you are now nearly five years on and very close to being discharged from oncology services. What were the aspects of your care which were done well and what could be further improved?

I think having an oncologist who had a very compassionate manner. What you do in the NHS is phenomenal. I could not do what you do and I take my hat off to the NHS. The caring side. Recognising the individual within the process. Maybe there is more to be done towards humanising care at every step of the process. This can be developed more.

What have you learned through the cancer stories shared through the cancer tapestry?

Families are important. Your network is important. Your community is important. I was very lucky in the sense that I have lots of friends and live in a community where everyone knew I had cancer and people were really nice and supportive. I could have not done this without my wife, Carmel who has been extraordinary.

Adding all this up, I recognise a caring treating team, a caring network is important, therefore developing the caring side in cancer is important. The compassionate side. With how you do that, I think the tapestry begins to point in that direction.

When people look at the tapestry they are moved. It is so human. It goes beyond other tapestries. It is universal. There is something deeply humanitarian about it. It is capturing something that is so hard to capture and doing this in such a different unique way. When you read some of the stories, you realise the human face of this disease. How you can change society to the point of the healing side is important. Your healing improves if you realise the caring aspect of it. There needs to be a combination of drugs, medicine and caring to support someone through the cancer journey.

What is the next panel for the cancer tapestry?

Fear of cancer and fear of recurrence. Which can be always there and you have to accept and embrace that.

You used the word resilience. What is resilience to you?

What helped my resilience is being well informed at every step of the journey and having a plan. I had an HPV positive cancer and was told my prognosis is good.

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