Posts Tagged ‘book’

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Michael Rosen’s The Sad Book and the shared experiences of the ‘C word’

June 2, 2012

“This is me being sad. Maybe you think I am being happy in this picture. Really I am being sad but pretending I am being happy. I am doing that because I think people won’t like me if I look sad.” The Sad Book, Michael Rosen

At Cardiff School of Journalism we had to submit a feature, both the copy and as a layout on a page, as part of the final stages of the course. Mine was about the way people who have cancer use each other as pillars of support. I made a vague effort to offer it to the Liverpool Daily Post as all those interviewed were Wirral-based but I never heard back from them. I probably should have pushed it a little harder as I was really happy with how the feature turned out. I spoke to several people and heard some very touching stories – having to fight back tears on at least two occasions.

I will post the feature below but the reason I bring this up now is because I have just started following Michael Rosen on Twitter. He is a children’s author – his book, The Sad Book, is what makes him relevant to my feature. Rosen’s son, Eddie, died at 18. The Sad Book explains the grieving process as one might to a child. It is an incredible book and one which one of the subjects of my feature, Sue Byrne, used to help deal with the death of her two-year-old daughter, Penny. Months after Penny’s death, Sue was diagnosed with breast cancer while pregnant with her second child. It was experiences like this which make this feature – though, I do not feel I could ever do the lives of these people justice in the words below.

I was put in touch with Sue, and given the idea for the feature, by my mum who was diagnosed with breast cancer in late 2009. The two of them, having never met before, became “cancer buddies”, if you will, as they talked each other through their own personal experiences of the illness. They both admit being able to speak to somebody else who had been through it was invaluable. Anyway, I do not want to discuss the issues too much here, I’d much rather advise you read Rosen’s The Sad Book and, if so inclined, take a look at my feature…

Cancer is like no other illness. Not medically but in the way people perceive it and react to its diagnosis, in themselves and people they know. For all the fun runs, fund-raising, campaigns, ribbons, t-shirts, badges and pink, there is a different kind of support network you might not find after the diagnosis of another illness. It is a bizarre club which binds patients together in a shared strength of experience. It is a club in which the illness can not be desensitised by a glut of media superlatives.

In 2007 almost 48,034 women were diagnosed with breast cancer in the UK, in 2008 12,047 women died from the disease. Even as modern medicine advances to the point where the average life expectancy in the UK is almost 80, cancer rates show little sign of slowing – incidence rates have increased by 50 per cent over the last 25 years.

Awareness of the illness in Britain has never been higher and support from charities and campaigns is plentiful. Unfortunately, this can not have an effect on the individual experience of a cancer diagnosis.

Though more and more people are surviving breast cancer, it is still the second most common cause of death from cancer in women after lung.

Cancer, or the “C-word”, despite vastly improving care, is a life-threatening disease, and one which seems to carry more negative connotations than other illnesses. The impact a diagnosis can have on a patient’s life is unique – no person is the same and no cancer is the same.

While the media focuses on the work of major charities like Cancer Research UK, and special events like Cancer Awareness Month in October, the support used by many patients is not as institutional.

The value of such charities can not be doubted – Cancer Research UK raised £433 million in the 2008/09 financial year – but they can not always deliver a personal support to individuals. Though charities like Macmillan do offer one-to-one nurse services for patients, the inter-patient support network which might sporadically form after a diagnosis prove itself to be invaluable.

The way people deal with their diagnosis is fascinating. Like any bad news, there are different mechanisms for coping with it, and the sense of community created by a breast cancer diagnosis is extraordinary.

The amount of emotional and practical support offered from shared experiences is one underestimated and unappreciated by those unaffected by the illness. It is one seemingly overlooked by ribbon campaigns and fun-runs, yet it is the one that is invariably vital in coping with the illness.

Like no other illness, breast cancer brings patients together to learn from shared experiences.Cancer Research UK has recognised the need for such help and launched a Cancer Chat discussion forum for people to share advice, support, or simply their thoughts.

Kate Arnold, Cancer Research’s UK director of patient information, said: “From talking to patients we have found that there is a gap in peer-to-peer support affected by cancer.

“By providing an opportunity for people to share information and experiences about cancer we hope to meet that demand.”

The gap mentioned here can be one much lamented by patients. Sue Byrne found herself with almost unique circumstances making it difficult to find similar patients to relate to.

Mrs Byrne, 44, lost her two-year-old daughter, Penny, to a brain tumour months before being diagnosed with breast cancer while pregnant with her second son.

Though at first she had support to deal with the grief of losing her daughter, once diagnosed it was difficult to find someone in the same position as her.

She said: “One of my first thoughts when I was diagnosed was: ‘I have to speak to somebody in my situation’. I don’t like the term ‘fight for life’ – I don’t like the way journalists talk about ‘battles’ and ‘fights’, but in simple terms, that is what it was.

“I was in a very dark place. I didn’t want to get up but I had to. I had my eldest son, Tom, and I was pregnant at the time so I had to go on.

“My real rocks of support at the time were two other mums who had children who also had cancer. We all used to meet up regularly, and without them I do not know whether I would have got through it. Though they didn’t understand about my cancer, they knew about Penny and they were able to support me. Whereas some of my other friends, they couldn’t. They didn’t know how to.”

Mrs Byrne found because she could not find support from people who were unable to comprehend what she was dealing with, she shut herself away.

She said: “My friends were very good. But if I’m truthful, I pushed them away.

“I made a decision that I had to shut everyone away completely, even my cancer rocks. I just felt I had to dig deep. I didn’t feel there was anyone who could help so I blocked everyone out. That’s the only way I felt I could go through it.

“Nobody can help me. There is nobody at all out there who can help me. If I go to a counsellor how can they help me?”

Though the incidence rate of breast cancer has been rising over the past decade, the survival rate is also increasing. But however promising statistics appear to be, cancer is still a shock word. It evokes fear and doubt in patients and their friends and families, perhaps more than any other illness.

Mrs Byrne has found the way cancer is treated with pity and overly-emotive phrases by non-patients, by people outside the club, can often be detrimental. And it is only when speaking to other patients the illness can be approached in a practical, beneficial, matter-of-fact way.

“There are other illnesses out there that are dreadful but whatever cancer you have, somehow a new language comes into it,” continues Mrs Byrne. “For some reason, as soon as you have acancer diagnosis, they start throwing the ‘be positive’ and the ‘you’ve got to fight this’, and that is how some people get through it. But I’m a realist as well, and I know my situation is not brilliant. I like to be with people who share a similar philosophy for life – how to get on with it. I have no control over this disease. I can’t battle it.”

Only people who have been through the illness are able to simplify the experience into a concept that can be handled. Mrs Byrne had a GP break down in tears in her front room at her situation. People with the illness have no desire to wallow in self-pity – the product of self-pity is a negative outlook. When experiences are shared between peers an openness and understanding about individual circumstances is available.

There is also an almost perverse comfort in sharing bad circumstances with other patients which is absent from talking to unaffected people.

Mrs Byrne said: “People don’t know what to say. You get a bit envious of their normality. There are people who are insensitive but really, you want to be them – you don’t want to be in your situation.

“You want the normal worries but suddenly you haven’t got that.”

As with any bad news, there is no textbook way of coping with it. Less so from the individual’s point of view, but from the point of view of friends and family. There are very few occasions in life when a person is faced with something like cancer. For people who grew up when breast cancer mortality rates were 50 per cent, a breast cancer diagnosis can be a difficult thing to comprehend.

Helen Morris, 57, was diagnosed with breast cancer last in 2009. She lost her husband, Graham, to leukaemia 14 years ago and believed cancer would never affect her again.

She said: “I tried to convince myself it was a mistake. I thought it couldn’t happen to me. It wasn’t going to strike twice in the same family, so I tried to convince myself it was a mistake. Because I tried to convince myself it was a mistake, the diagnosis came as a shock.

“Your illness takes over your life. One moment you’re a businesswoman, you’re a lawyer, you’re going out to the gym, and you’re fit. The next day, everything has changed.

Mrs Morris had surgery followed by chemotherapy. Faced with losing her hair, she decided to shave her head for charity. This meant publicising her illness.

“You’re not a leper, you’re a human being who has an illness that needs to be dealt with,” she said.

“Once I decided to raise money, the whole world knew – that just opened the flood gates to support. Once I knew I was ill people had to know. I didn’t want to hide it because I needed people’s support.”

“I needed practical support – lifts, mowing the lawn. If I had been here on my own, and I didn’t get calls or letters, it would have been awful. I’d have been stuck here thinking about what a poor and sorry woman I was. Publicising it was the best thing I could have done.”

She was able to raise more than £6,000 for a cancer charity but perhaps most positively, it ushered in waves of support, as well as contact from patients she had never met before offering her support.

She was able to find support that Sue Byrne was not able to. Mrs Morris recognises the potential dangers in sharing experiences with other patients as every cancer is different and every person reacts differently.

If she were to speak to someone who had coped better with the chemotherapy or was out of hospital quicker, it had a negative affect of inferiority. Though she accepts this is not completely rational it is hard not to compare circumstances.

However, as treatment and survival rates have improved, peer-to-peer conversations can be a lot more positive.

She said: “I found once I was up-front about it, most people responded very well. And I think that is because a lot of people know people who had cancer and survived.

“It’s not like a bereavement where people don’t know what to say. I think had I been terminal, people might have found it more difficult, but because the prognosis is good, everyone can be upbeat.”

There is a practical side to patient interaction. Though chemotherapy can involve different drugs, and radiotherapy, different schedules, treatment from person to person can be quite similar.

Mrs Morris was dreading chemotherapy as she had heard nothing but horror stories, however, on talking to people who had had it, she was able to learn a lot more – practical details about whether she would lose her hair and nails, how long she would need to rest for after each dose, or how best to cope with tubes and scars.

She suggests the nature of treatment is what makes cancer an illness that brings people together.

She said: “There’s a sense of community because it’s not a nice experience. Physical mutilation, followed by poisoning, followed by being zapped by lasers. There is a definite bond between two people who have been through it.

“Because the ‘C-word’ historically has these horrible connotations because people didn’t used to survive cancer and because the treatment is so awful. I don’t think we give ourselves a pat on the back but there is a definite sense of community.”

Doctor David Galvani, an expert haematologist consultant at Murrayfield Hospital, rates the psychological support gained from peer-to-peer experiences as valuable as the treatment itself.

He said: “I have often thought the emotional support is as important, if not more important than the chemotherapy or surgery. I know many people whose treatment has gone well but the psychologist support has not been there, so their experience was much tougher.

“The stigma of having cancer is not quite what it was 10 or 20 years ago. I think people are a lot more open and aware to it now.”

He recognised although the National Health Service was good at treating cancer, when it came to emotional support there was a gap.

This makes informal support between patients all the more important. It is the kind of support that may seem ideological to the cynic, but the difference it has made to some patients, and the ways it has kept some people afloat is amazing.

To friends, family, and well-wishers the timescale of the illness can be seen in a finite manner. However this warps the concept of curing cancer, because, in reality, the chance of coming out of remission is ever-present. The fact of the matter is, for patients, cancer can never be forgotten.

Norma Webster, 70, has been in remission from breast cancer for years but the fear never goes away.

She said: “I’m still alive. I wake up in the morning and thank God I’m still alive. Every day is a bonus.

“I was very fearful. I was petrified. Absolutely petrified. I wasn’t going through it as if I was going to be alright tomorrow. I thought I was going to die.

“I think it is part of the norm to always have it at the back of your mind. It can come back. Some days I don’t even think about it, but every day, every newspaper, it is there. There is always a reminder. People have to be aware – to check themselves.

“I do think I am so lucky – and that’s important.”

That people who have not been through cancer are not aware of its perpetual nature demonstrates the importance of shared patient experience. It also highlights how difficult it can be for people outside the ‘cancer club’ to cope with their friends and family being diagnosed.

All three women have come across people, some friends and family, who did not know how to cope with the illness. Where Mrs Morris found one of the hardest parts of her diagnosis was telling her sons and the people she loved, Mrs Byrne shut herself away because the people who could not help her, could only make it worse.

Mrs Byrne found comfort from an unexpected source – a children’s book. Michael Rosen’s Sad Book came to be her bible.

Michael Rosen lost his son, Eddie, and uses the book as a way of explaining in the simplest terms how grief affects people. Some of the pages go a long way to explain how people might feel coping with a diagnosis, or in Mrs Byrne’s case, a diagnosis and the loss of her daughter as well.

The page she suggested represented dealing with sadness for her has a picture of a man smiling on it. Underneath it reads: “This is me being sad. You may think I’m being happy in this picture. Really I’m being sad but pretending I’m being happy. I’m doing that because I think people won’t like me if I look sad.”

Mrs Byrne expressed some of the difficulties in coping with sadness that is perhaps best dealt with my people who have been, or are, in the same situation as you.

She said: “You have a public face. People don’t want to hear bad news. You can’t keep talking about it. You can’t keep harping on about it.

“Friends will listen to a point, and I think that is why you need people who have been through that experience – been through a cancer diagnosis.”

When patients have radiotherapy they are marked with a tattoo where the laser needs to be aimed each time. This is a physical mark of the club which cancer seems to represent. Diagnosis, treatment, and the knowledge it is never really over create a strong community that can rely on each other for support.

It seems uplifting in a time of continued and prolific medical advancement, one of the best antidotes remains something detached from science, shared experience with another human being.