It was a great pleasure to speak, on the 6th of December, at the All Party Parliamentary Group on Cancer’s Britain Against Cancer conference in Westminster Hall.
More information about the event can be found here. http://www.macmillan.org.uk/about-us/what-we-do/we-make-change-happen/we-work-with-governments/appgc/britain-against-cancer-conference
I really enjoyed the day, I met some great people, and it was a huge privilege to share some of my thoughts on cancer and its image in 2016.
The full text of my speech is below:
The Image of Cancer
Good Morning. My name is Kate and it is a great privilege to be here today to speak about my experience of cancer and its image.
If you had told me two and a half years ago, I would be here this morning, I wouldn’t have believed you.
Because, in July 2014 I was taken by ambulance, to A&E and then stayed in hospital for three weeks. On the first night, I was too fragile to be moved to Intensive Care and, they almost lost me. Two days later I was diagnosed with Stage Four B Hodgkin Lymphoma. And I have been living with cancer ever since.
I’d been unwell for some time but, busy teaching six days a week at a boarding school, I ignored it. The initial signs, tiredness and weight loss, I attributed to stress and overwork.
Later symptoms such as night sweats and extreme itchiness, I did not give myself the time to question.
By the time, I could feel lumps in my neck, armpits and groin, I was petrified and in denial. Even if I had seen a doctor I would not have found the words to describe what was happening to me. I worried about upsetting my friends and family and how I would be perceived with cancer.
I have had five courses of chemotherapy, four batches of radiotherapy and, courtesy of my amazing donor brother, one allogenic stem cell transplant to get me to where I am today; well enough to attend this conference.
My immune system and blood cells are now a copy of my brother’s. My blood type has changed to his, my blood cells have Y as well as X chromosomes, so if either of us left blood at the scene of a crime, we could both get blamed!
The last two and a half years have been quite a journey. Today we have this incredible opportunity to gather, discuss the state of cancer in 2016, and inspire plans for change. There are three things that I’d like to talk about – specifically on the image of cancer.
- Firstly – Why does the image of cancer matter?
- Secondly – The status quo: the image of cancer in 2016
- Thirdly – The future: how should cancer be perceived?
Why does the image of cancer matter?
Why am I talking about the image of cancer? And particularly to an audience like you; with amazingly expert knowledge. Surely the most crucial thing is to develop more effective treatments? Medical advances are vital and I look forward to some of today’s speakers providing insight into the latest developments. But, as we all know, a diagnosis of cancer means much more than a discovery of uncontrollably dividing cells. Cancer has affected every aspect of my life and its image has been central to how I, and importantly others around me, have understood cancer. Much of my journey would have been easier if cancer was perceived differently and I would therefore like to encourage a discussion about how we can improve its image in the future.
The status quo: the image of cancer in 2016
I’m firstly going to explore two popular images of cancer. These are stereotypical not universal images but they help to highlight some issues with the popular understanding of cancer.
The first image: And this I will call the ‘survivor’.
The second image: And this I will call the ‘sufferer’.
For some, one of these images is the reality but for many, including me, it is not. In an era where 1 and 2 will develop cancer, there is no longer a simple cancer dichotomy; it is not just kill or cure.
Turning to those images.
Firstly, the ‘survivor’. Their experience is often summed up as; a lump, an operation, radiotherapy, chemotherapy, the all clear, remission, survivor. The language around this framework is all about fighting. A recent campaign that subscribed to this idea called for a ‘revolution’ or a ‘rebellion’ against cancer. It is something to be ‘beaten’ and ‘overcome’. For a time, I identified with this image. I was apoplectic with rage about my diagnosis, I wanted to scream at the sea and crush cancer but, after a time, I realised this attitude would only get me so far. I see three main problems with the idea of ‘destroying’ cancer:
- It suggests that patients have some sort of control. If only you battle hard enough then you will win your fight and you will become a survivor.
- It suggests that if you are fortunate enough to be in remission you have somehow achieved something. Coming to the end of treatment is not the only part of the cancer journey that needs to be celebrated.
- I remember how unsure I felt when people congratulated me on the ‘end’ of chemo. I felt like a sad failure when I realised that, yet again, I was going to need more treatment. I felt like I hadn’t been doing my best to overcome my cancer.
- This image also suggests that once you have your ‘survivor’ badge, cancer is finished. People cannot understand why a ‘survivor’ would still be nervous about a scan. They do not consider that with every check-up, the crippling fear returns.
Secondly the sufferer. Their experience of cancer is often summed up as: a lump, more lumps, inoperable, a terminal diagnosis, chemotherapy, palliative care, death.
This image is all about tragedy. It would be misleading to suggest that cancer is not, at times, tragic. But thankfully tragedy is becoming less common. More than half the people receiving a cancer diagnosis will now live ten years or more.
Even if the sufferer does not ‘succumb’ to cancer, this image encourages pity. In a recent radio broadcast, a person being treated for cancer remarked ‘Cancer takes your dignity away’. This sufferer was being portrayed as a victim.
I want to challenge this image too because:
- Perversely, while the first image misleadingly suggests that ‘survivors’ are totally responsible for their future, the sufferer image suggests that everybody else affected by cancer is not. When people with cancer are perceived as ‘victims’, it suggests that they cannot affect their experience. It leaves them helpless and vulnerable.
- The sufferer image ensures that cancer is perceived an illness. It can encourage stigma and leave those living with cancer feeling like they have something to hide. I have lost track of the number of times people said ‘I’m sorry’ when learning I have cancer. Apologies are not necessary.
- The sufferer image breeds fear. It means that people with suspicious symptoms delay going to the doctor because they are terrified about what a diagnosis of cancer would mean. Survivor and sufferer; both are sometimes useful but by themselves are increasingly inadequate to represent cancer in 2016. So what can we do so that cancer is portrayed differently in the future?
The future: how should cancer be perceived?
1. Cancer can be, and is increasingly becoming, a chronic condition:
There are many, including me, who are living well with cancer. Those who are no longer in treatment are also living chronically with cancer. For example, those in remission cannot help but worry about previously dismissed aches and pains. Whether someone who has been affected by cancer is still in active treatment is in many ways an arbitrary point. A person living after an ‘all clear’, is still dealing with cancer. The real distinction in experience comes between those who have had a cancer diagnosis and those who haven’t yet. What if we stopped just celebrating ‘survivors’ and instead everybody who has been affected by cancer?
2. Cancer is as much a mental as a physical condition – which treatment should reflectThe hardest challenges I am facing are currently mental.
Macmillan have provided counselling to help me adapt my life, and the lives of those around me, to make permanent room for cancer.
At a time of stretched NHS mental health services, I’m extremely grateful for the counselling which was provided within weeks of my referral.
Even for those who are no longer in physical treatment, the mental effects are ongoing. When the routine of regular hospital appointments disappears, the loneliness can start to creep in.
Imagine a world where it was publicly understood that the mental side of cancer needs to be treated as seriously as the physical side. It would transform the lives of everyone affected by cancer.
3.It is possible to live well with cancer
I have, as much as possible, lived well throughout my cancer journey.
I walk, run, sail, ski, read, paint and I have kept a blog about my experiences.
I volunteer for the National Trust and for my local school. I haven’t yet returned to work but I am hoping to do so soon.
Our working world is not always very accommodating for people with cancer as the unpredictability does not fit well into the workplace. If we truly began to accept cancer as a chronic condition, in the way that diabetes or HIV are, it would be even more possible to live well with cancer.
4.Call cancer ‘cancer’
We find so many ways to avoid calling cancer ‘cancer’. We call it ‘the big c’, euphemistically say ‘she’s not been well’.
But as soon as it is called anything apart from cancer it suggests that there is something to hide. Making assumptions about cancer is difficult; people say ‘you must feel so poorly’. ‘you must be suffering’.
Everybody’s cancer is complex and unique. Call cancer ‘cancer’ and if you want to know how somebody with cancer is feeling, then ask.
We should talk even more openly about cancer and those affected should never feel like they have anything to hide.
I have never, since my diagnosis, felt ashamed of my cancer. I lost my hair, twice, and I proudly wore my bald head, always with earrings, and sometimes, courtesy of an artistic friend, with decoration on top.
Sharing the new image: we should be increasing cancer education
As much as people know that cancer treatment may involve chemotherapy, and or radiotherapy, and or an operation, so few people know what this means.
Walking into my chemo ward for the first time I expected to see cancer patients, ill people, people who were not like me. I was delighted to realise that the others in the ward were just people.
I wrote a blog piece on chemotherapy which was well received; people want cancer demystified.
We have had ‘24hrs in A&E’, ‘One born every minute’, ‘Inside the Portland Hospital’ why have we not had ‘A day in the life of the Royal Marsden’?
Fantastic people within the NHS and Macmillan have helped me to look at cancer in a different way. Messages about cancer should radiate out of hospitals and Macmillan centres. If people knew more about cancer and the reality of treatment, fear and stigma would decrease.
In conclusion, I hope we can all agree that the two conventional images of cancer; survivor and sufferer, are insufficient to understand cancer in 2016.
While my speech has been all about images and labels, I have not suggested a new label for those affected by cancer in the future. This is because I don’t think one label is enough – we instead need an infinite number of labels. We should all be creating our own images of cancer.
I have been surprised to find that I no longer want an identity without cancer but, equally, I do not want it to be my entire identity.
I’m not a survivor, I’m not a sufferer. I’m a tall, cat loving, skiing addicted, history teacher from Emsworth. I am Kate and I am living with cancer.