Why I Wrote Emotional Support Through Breast Cancer By Cordelia Galgut

cgalgutMy new book Emotional Support Through Breast Cancer, the alternative handbook, is a culmination of a process that started almost 10 years ago, when I was twice diagnosed with breast cancer. Before being diagnosed, as a psychologist, I sometimes supported women with breast cancer and considered I had a pretty good take on what they were going through and my clients were too polite to disabuse me of this. Little did I know!! Life on the other side of the fence turned out to be completely different and much harder than I could ever have imagined, both emotionally and physically. Indeed, I was so struck by the differences and fed up with the general lack of awareness I experienced amongst most of the people treating me and around me that I decided to set about writing about these issues from my new dual perspective, in order to raise awareness.

I started with a series of articles that were published in both the popular press and professional journals, which provoked many responses from women saying things like, ‘Thank goodness I’m normal, I thought it was just me who was still lying awake at night worrying about recurrence several years after diagnosis, until you said you did.’ Or the women who told me how sick they were of trite judgements from others such as: ‘It’s time you got on with your life!’; ‘You should be over breast cancer by now.’ or ‘You’re over-anxious.’ Strong themes that also emerged from their feedback were their fear of speaking out about how they felt about breast cancer, for fear of being judged and/or their treatment being adversely affected, and the ignorance of the health professionals treating them. However, they wanted me to speak out for them.When I did so, I was often met with skeptical responses from health professionals, saying things like,‘Oh it’s just the minority who feel bad ongoingly ,’ or ‘you’re overstating how traumatic the experience is.’

This chasm of a mismatch between the views of the health professionals and the women themselves, plus my new found awareness, spurred me on to write my first book, The Psychological impact of Breast Cancer: a psychologist’s insights as a patient, written for health professionals, the aim of which was to highlight both good and bad practice and what seems to help and what doesn’t.

This book was read by women with breast cancer, too, although it wasn’t really meant for breast cancer sufferers. The fact they were reading it, and the feedback they were giving me, highlighted more than ever the need for a support manual that didn’t downplay breast cancer’s emotional effects and that validated women’s deep and enduring emotions about the gamut of effects the disease has. There was also a need to directly challenge the whole notion, so prevalent in society at large, that you’re abnormal if you can’t ‘move on’ or ‘get over’ an extreme life trauma such as breast cancer. In fact, I challenge the whole assumption that you can get over breast cancer, especially given that scars remain, both emotional and physical, and fear of recurrence is ever-present. How can we ‘get over it’?

Our review of the book is here.

Clare Jonas on Synaesthesia {Interviews}

Clare Jonas sits on the Southbank on a sunny Saturday afternoon. She’s not what most people imagine an academic to be like. Although she’s just about to finish her PhD at Sussex University, out of her satchel she pulls a ball of wool and some knitting needles.
Clare: Do you mind if I knit?
She’s recently taken up knitting and appears to be making some sort of hat, possibly to keep her enormous brain warm when the winter comes. Clare is obsessed with brains and has been poking about in them for most of her adult life.

Frost: Tell us what it is you do…
Clare: I research Synaesthesia which is a condition in which the senses get senses get mixed up, or two aspects of the same sense get mixed up or sometimes the concepts of the sense get mixed up.
Probably the most common type that involves mixing up the senses involves sound and vision, so you might see colours when you’re listening to music for example.
The way we refer to the different sides of Synaesthesia is inducive and concurrent. The inducer is what causes the Synaesthesia, maybe a letter or some music. Concurrent is the resulting sensation you get which is a ghost sensation.
Frost: Is it the same for everyone who experiences Synaesthesia?
Clare: Not every Synaesthae experiences it in the same way. Using the example of sound to colour synaesthesia; for some people a trumpet’s sound might be red, for others it might be blue.
At the moment I’m interested in the patterns of Synaesthesia but I’m moving towards how Synaesthesia differs from normal experiences and what can that tell us about “normal” experiences.
Frost: What interested you in the subject? Is it something you experience?
Clare: Yeah, I do have Synaesthesia. With me it’s concept and sense being mixed up. When I think about numbers or time or letters of the alphabet, they have spatial locations, so for example; the number ten is just in front of my right shoulder and January is by my right eye, the letters of the alphabet are kind of off in space to my left and above me.
Frost: Is Synaesthesia the result of nurture as opposed to nature??
Clare: I don’t think so because my brother and I went to the same primary school and would’ve been taught by the same teachers and he hasn’t got Synaesthesia and I have. It’s to do with the hardware in your brain. The theory at the moment is that some people have a genetic predisposition to Synaesthesia.
In the case of number and space getting mixed up, when you’re a young child with a tendency to have synaesthesia, you might put the number one, for example, in different places depending on the different times you’re looking at it, but as you get older your synaesthesia settles down into a fixed pattern.
We have a break and go for a wander talking the about the intelligence and comedy of homing pigeons as we stumble upon a science fair. “Keep your eye out for brains” coos Clare; she’s in her element as she quizzes some unsuspecting degree students about the power of algae and the magnetism of ants. I learn that you can remove parts of an ant’s legs and they try and carry on as normal and somehow it proves that ants count the number of steps they take. As she quizzes several more undergraduates and I’m sure I see one physically tremble with intellectual intimidation.
I carry on and ask her more questions.
Frost: Is synaesthesia a hindrance for people that experience it?
Clare: No, most people say they enjoy it. Although, in the same way that most people don’t know what it’s like to have Synaesthesia, so they can’t imagine the world any differently, that’s how it is for a synaesthete. So if numbers have colours or words have tastes, it’s just the way they’ve always been.
Frost: Could some people have such severe experiences that they don’t carry out a normal life?
Clare: No I wouldn’t say so, the worse thing I’ve heard from a Synaesthete is that it can be distracting. So if you’re trying to read a book you keep getting distracted by all the different colours of the letters for example. It doesn’t hinder people in any significant way as far as I know. In fact most of the time it can be kind of helpful, if you imagine you’re meeting someone for the second time and you’ve forgotten their name but you know it was a green name, that could mean that it must start with the letter “f” so you can narrow it down and you’re less likely to embarrass yourself.
Quite a few types of Synaesthesia, we haven’t investigated all of it, you get an advantage in the concurrent domain. So people who have letter – colour synaesthesia would have better colour processing than most people.
Frost: Do these people maybe tend to take up to artistic careers?
Clare: There’s some anecdotal evidence that synaesthete tend to go into more artistic careers but the synaesthete I’ve met do all kinds of things. When people contact us because they’ve heard about Synaesthesia they’ll often be people who work in offices or students, other academics, occasionally I’ll just be talking to a friend and they’ll say “oh but I have that! Isn’t that normal?” There are people everywhere who have synaesthesia…it’s actually quite common.
Frost: How common is it?
Clare: It depends on which form of Synaesthesia you’re talking about, the kind I have, the spatial stuff, that’s probably about 1 in 4 people have some kind of spatial synaesthesia. This includes thinking of time as having a spatial component or letters or numbers.
Frost: How do we know we’re not just imagining as opposed to it being real Synaesthesia?
Clare: There are two ways we can test it, the first is a modified Stroop test. In the original Stroop test people are asked to look at the names of colours, e.g. yellow, and say what colour ink it’s printed in, i.e. it might be printed in green. It’s much harder to say what colour the word is when it doesn’t match the ink. Then you see how long it takes them to name that colour as opposed to when it matches.
Frost: So it’s a massive disadvantage on brain training games?
Clare: I’m not brilliant at them and I don’t even have colour synaesthesia.  That test doesn’t always work; there are some people that don’t show that effect at all. If that’s the case there’s another test based on consistency. So this you can do more easily and on a wider variety of people. Basically what happens is we’ll test people on their inducer and concurrent pairings, for example we’ll ask them “what colour is five for you, what colour’s six, what does the word ‘brain’ taste of” that kind of thing. Then we’ll also get someone who doesn’t have Synaesthesia in and ask them to pretend that they have Synaesthesia. We tell the non synaesthete that we’re going to re-test them after a few days or a couple of weeks. We don’t warn the synaesthete that we’re going to re-test them and we test them again a longer period of time later than the control, so maybe months. So the idea is if the synaesthete is more consistent than the control over time, then they almost certainly have Synaesthesia.
Frost: Wont people be tempted to re-create the effects with drugs?
Clare: Well there are reports that there’s a drug in South America that can induce symptoms like Synaesthesia but it also induces severe vomiting.
Frost: Lovely, what’s the most unusual type?
Clare: the strangest is probably lexical-gustatory; where words have tastes when being read or spoken or heard. Or mirror touch; when you see someone being touched on their body and you feel that touch in the same location on your own body.
Frost: Do you know of any famous people that have Synaesthesia?
Clare: Thom York, I think he has music to colour. Probable Kandinsky had it, his painting are said to have names of musical compositions and look a bit like other peoples reports of Synaesthesia of music to space. Pharell Williams in N.E.R.D.
Frost: If someone wanted to find out more about Synaesthesia where can they go?
Clare: They could have a look at our website which is www.syn.sussex.ac.uk which is my research group which is headed by Jamie Ward. They can get involved in tests if they think they might have Synaesthesia. There’s a questionnaire on the website which they can fill out and send back to us or if they think they have a Synaesthesia which we haven’t covered on the questionnaire they could email us and ask. There are people doing research all over the world.