Digital Insides

# 4 Claire Collison

C:I was first diagnosed with cancer in 2014.  The dates of all these scans offer a type of history. Why is it moving like this?

L:It’s imagery taken in sequences.  It’s like an island.

C:Like rave graphics.

***

C:This was a benign, nothing-to-report screening that I assumed every other screening would be like. This is it before they could see anything, so let’s compare them to each other and see if we can spot something before they did.

L:Have you ever been shown any images of these images before?

C:They have been on screen, like wallpaper, whilst they talk to me, but no-one has ever pointed directly at the image and said, ‘You see this bit. Here, that’s this.’

L:Even with the tumour they never said this is it?

C:No. They had the images in the background, like stigmata, like evidence.

L:The relationship of the visual to the truth. They are so entangled together in the idea of objectivity and that has become core to medicine now hasn’t it?  The idea that the image is always used to verify. Is there anything in what you are seeing that is familiar?

C:Yeah. There’s one when they slap them [breasts] on the thing and the other one where they press you. What I know about breast imaging comes from Jo Spence.  Look you can see the nipple.

L:They are very global aren’t they? It’s surprising how much of the image appears as a void.

C:It looks like the stuff when you are poaching an egg, and the egg is a bit old and all the white goes into the water.

L:A sort of material dispersal…..

***

L:So this is the screening where they identified something. Is that date firmly inscribed on your memory?

C:No, not at all.  What I do think now I pass the building is – and I’m really interested in my psycho-geographic map – ‘it’s next to the sexual health clinic, it’s just down the road from Kings, it’s near by Dicky Dirts, where I would get shirts in Camberwell, and that is where it all kicked off.’ It’s innocuous. Innocuous is an interesting word isn’t it? Because you inoculate.  A week after the mammogram I got a letter and it said, ‘We need further information, could you make an appointment to come back again.’ I phoned them up and said, ‘The time you’ve suggested is not going to work,’ and I could tell from their voice that they were in that really awkward place and they didn’t want to alarm me. They couldn’t disclose anything but they were saying ‘it would really be in your interest’. And that was the first little alarm bell.  It was the beginning of trying to decode what they were saying, to get an idea of what they knew.

L:There seems to be different approaches to communicating these kind of certain uncertainties to patients.

C:It’s an infantilising thing, to realise that people know stuff about you that you don’t know yourself, and that you are going to have to behave in a certain way to access that information. You are out of control but you don’t know how much yet.

L:Imaging seems a part of that. The time delays it introduces.

C:It’s interesting that you say did they not talk me throughout the images. They deny you access to something. I mean they’ve got a picture that would really help me understand, but they don’t show it to me.  This is my right one, this is the one that’s okay [laughs].  So let’s go for the left images.  And let’s not start finding things that they missed [laughs]. Don’t freak me out.

L:Yes the misreading of images….

C:We are completely untrained at what we are doing, we shouldn’t even be trying to….

L:No.  And we’re not are we?  We’re not trying to do any diagnosis.

C:But it is inevitable that I’m looking at these and thinking, ‘Have they missed anything?’

L:Are you?

C:Of course, have they missed anything? What was it that they saw? Ooo – look at that, that’s beautiful. In Spain you get to keep all your own files, you carry them around from appointment to appointment so I was carrying mum’s breasts around in her file forever. I sellotaped them together and made this whole hemisphere of breasts. I have no idea if they contained her primary cancer.  Okay so what have we got here?

L:They are very much like photograms aren’t they?

C:I had no symptoms, prior to going to my routine mammogram; there was absolutely no indication that I had a problem you know?  I wasn’t worried in the least. Because of the history in my family I’d be an idiot not to have it done. I don’t understand people who say, ‘I don’t go to mammograms, I don’t believe in them’. Well, what is there not to believe in? That just seems ridiculous, and it makes me quite angry.  This one is a very odd shape (laughs) compared to this one but it’s just how it’s flattened on the glass, it’s not like it’s in any natural place. It’s being squashed hard between two pieces of glass.  But this one, there’s a definite blob here.  There were three tumours. I had 3 tumours in my breast.

L:We could speculate, but we’ve got absolutely no idea.

C:Yes, that could be one, this could be another.  We’re presuming the grey bits are the tumours. Anyway, they called me back for a second x-ray. King’s Hospital has got a room with two doors in it.  The right side is once you’ve been diagnosed. The geographical structure of the space is: that side you know you’ve got it. And this side: you could have it,but they’re not sure yet. The tension!

L:You are in that state of very uncomfortable uncertainty.

C:I was sitting waiting and this woman came out and she had a friend waiting for her, and she said, ‘It’s OK we can go,’ and as she left she said, ‘Good luck everyone.’  And there was this part of me that went aagh crap, that means statistically….

L:You’re alright so I’m more likely to have it?

C:Yes, the probability of being clear has just gone and plummeted. When I went in they did the mammograms there and then. Then they said, ‘We just need to take another look because we’ve seen a little blobby.’

L:A blobby?

C:Yeah, just a little blobby. And based on that they wanted to do an ultrasound. So what are they seeing here that they were concerned about?

L:We don’t know. It is tempting to look for irregularities.

C:Can we keep looking through all of these ones?  That definitely looks like something to me. So then, at this point, they said, ‘We’ll just go from this machine to another machine across the corridor.’ Wow look at that.  OK stop there. Look at that. You can see the folds in it.

L:Look at that line, it’s the body reduced to an absolute minimum.

C:Then she said they’d just seen a little blobby, and I was lying down and this woman said, ‘We haven’t got the right sized needles, so we’ll use this one.’

C:So they were pressing on the breast with an ultrasound thing, and this woman was holding my hand until I was hurting her and I was trying to look at the screen, and this bloke walked in who I’d never seen before in my life and said ‘Biopsy that’ and ‘Biopsy that’.

L:While you’re lying there.

C:He didn’t look at me, he looked straight at the image. And I met him once afterwards.  That was the first time anyone had used the word biopsy.  So they were sticking needles in and it was agony and I was so frightened, because I knew by then and thought ‘oh fuck’.

L:It escalated.

C:Within ten minutes of being through that door there’s suddenly cancer.  I could be dying, this is it, and there was no interface between those things, I was just taken from one room to the other, with blobby, and the only human contact was this woman whose hand I was squeezing.  The biopsy was the most painful thing in the whole process of the cancer, because there was no warning, no anaesthetic, and I was terrified and I had no one with me.  And afterwards, they didn’t have a breast nurse because one had gone on extended leave and the other one hadn’t finished her induction. So I was given this woman with a 20-questions-animal-mineral-vegetable-role who wouldn’t say anything because she was terrified of the implications, that I could sue her, that’s what that felt like. She told me I had to come back the next day and bring someone with me.  Is there a time on it? 3.54pm. The 8th of April.

L:Could you see the image on the screen during the procedure?

C:Just about but they aren’t making it easy for me. But I can catch it out of the corner of my eye. I can’t see what the hell they’ve noticed, but they are sticking a needle in it at the same time, so they’re looking at one thing but it’s affecting something over here.  What’s the difference between a radiographer and a radiologist?

L:The radiographer takes the image and the radiologist interprets it. It sounds like you had an image-guided biopsy. That’s where they use imaging to guide the needle to get a tissue sample from the right place.

C:Ooh, wow, look at that, it’s like a moon.

L:Like a surface. It’s so lunar. And very low resolution.  It looks so much like a breast, the inside and the outside have a correspondence.

C:It reminds me of when I first made honeycomb crisp. You put bicarb into caramel and it just goes brrrmm. There it is. They found it. How amazing. [Big sigh.] So the next day I saw the surgeon, he was looking at all of this stuff, and it was urgent.

L:So at this point you knew you had breast cancer but they hadn’t told you as such?

C:The surgeon said, ‘You’ve got three tumours, and you’re going to have to have a mastectomy, and what you need to decide is if you want reconstructive surgery now or later.’ That was his sentence.  No explanation of anything.  What I had to worry about was when I wanted to make myself look right again.

L:Whether you wanted to be reconstructed.

C:Not whether, when! Not even think about you might die or what the implications are, or probably once we’ve done that we’ll be doing this, or the type of tumour you have is this kind. He said ‘You need to make this decision.’  I had all these questions and then I was given this wonderful woman who had come out of retirement, was not meant to be there, and she runs the support group that I attended. She sat me on a sofa and my partner was there and she was doing all this stuff like getting prostheses out of a box and saying, ‘Have a feel of this.  If someone gave you a hug and you were wearing that they would never know.’ I was saying, ‘No, but I would!’. It’s all about other people’s perceptions of you, immediately we’re starting to talk about how we’re going to build me up so no-one will know.

L:So you don’t upset other people?

C:You have to decide whether you want reconstruction before you even know if the cancer has spread. I wanted to know biopsy results first before I chose whether to have reconstruction. [That didn’t happen.]

***

L:Here we are talking about illness and loss, both facing the screen rather than each other.

C:My breast got poorly, a detached view. It’s no longer part of me.  These are the biopsies, just what you want after lunch.  Because that really does look like liver, so meaty.

L:It looks like lots of things.  A rock, or cabbage leaves.

C:Fossils.  Flint.

L:Do you see this?  A metal implement to hold the biopsy in place so someone can take a picture?

C:It could be staples, but in this day and age would they be stapling things? This is my bit of flesh, which someone has stapled. I use my body so much in my work. I’ve got so many self-portraits of me naked aged 20-40 from when I worked as a life model. So I know my breasts so well. I’m used to seeing my breasts in images, from the outside, as things that are going to be exhibited. I can disassociate from them being part of my body.

L:So this is a kind of continuation of that?

C:Yes. Look, now we are in the breast. It’s like a fantastic voyage.

L:This is six weeks later.  This seems like the tissue they removed.

C:It’s actual slices of breast, probably to scale, crucified little bits of tit. Look at that, it’s like Parma ham.

L:It does look very edible. It’s curling at the edges.  This image seems to be having more of an impact on you than the other ones?

C:It’s because it’s no longer part of me. This is beyond me now. This is forensics. I wasn’t there anymore. This is what they did with me after I left the room.

L:And it doesn’t look like a breast anymore either.

C:But all the things that came from these images were good news. In the Hunterian Museum they’ve got the flayed body with all the nerve elements. People like pressed flowers. This is like that, the territory of medieval torture. That’s a transect. They have cut slices from the breast they removed.

L:Are you reading that from the images or is that because you know what they did?

C:The image.  I had no idea that they did that. They don’t say ‘we’re going to cut your breast off, and when you’ve not got it anymore we’re going to slice it up and staple it’.  You can see why they don’t tell you stuff like that.

L:Economy with the truth to protect patients?

C:Yeah. I don’t think they’re evil, I just think they don’t want to do it, they are mitigating constantly between what they know and the implications.  In the time slot with patients, there is no way that they can possibly disseminate what they know in a way that is meaningful. I made a point whenever I went to any face-to-face appointments to dress like I’m going to an interview.  So they could look at me, and they could immediately assess that I could handle all the information that they were going to give me. ‘I’m an educated grown-up. I want you not to guard yourself with how you tell me things.’

L:The fact that you have to do that work as a patient….

C:It’s about keeping some control.  And I have to trust these people. It was incredibly reassuring when I got that cross put on me [on the breast, before surgery] like the one I’d seen in the Jo Spence photo. It meant that they weren’t going to fuck up and take the wrong breast off.

L:You are materialising in front of us.

C:That’s me. Wooooh. It’s like those hippy lights, it’s like a great big lump of garnet or something.

L:It’s you, like you’ve never looked before.

C:I am assuming that bit in the middle is what they are interested in. About 1.5 cm, the largest of the tumours.

L:It is starting to look like a brain, or a map. As we can’t read it medically the possible projections are endless. I am obviously looking at it differently from you. I am less attentive to the things you’ve talked about. For instance, you were wondering whether there is something they’ve missed. And you are coming back to the information that they have given you, such as three tumours that are 1.5cm.

C: lt looks like a lemon. I’m telling a story that links up the dates. But almost nothing that I see in the images helps that narrative. This so other than anything I was going through, this is like a fabulous pop art show that we’re seeing [laughs].  Some groovy kind of disco.

L:It doesn’t feel like a representation, especially this stuff which is much more abstracted.

C:We have no idea what we’re looking at. We’ve just got it on their authority that it’s me.

L:You, reduced to a kind of specimen. The biological you.

C: Yeah I don’t mind that, it’s like an extra me. If I could show that… I could have it on my Facebook profile picture. My avatar. That’s me, with staples.

L:A radical re-imagination of the self-portrait.

C:In the same league as people sharing baby scans.

L:This is where it’s going!

C:Let’s just keep going. Chest x-ray, echogram….So that’s the first day I had chemo. 20th June. A month-and-a-day after my mastectomy. It’s just a mark in time as far as I’m concerned. Keep going.  Another mammogram.  I felt a lump on the only breast I had left. Show me I haven’t got cancer.

L:That’s where imaging comes in.

C: What are we looking at now? It’s like an ocean.  During the echogram, he’s got his arm wrapped around me and I’ve got my back to him and he’s holding me so it’s around here like this, and I’ve got to lie on my side and he’s rubbing this thing and say breathe, don’t breathe, breathe. He is feeling over me and I can just hear, boom, hiss, hiss, like that. Now I have annual mammograms.  That’s me maintaining my control, it’s for my benefit, it’s about reassurance, it’s about my mind as much as my body. It’s part of how I take psychological care of myself. It really matters that I don’t have a long wait to get the results.  The wait between the test and the results does psychological damage.  That waiting place is the most stressful thing I can imagine. I am making myself so vulnerable. I can’t have this done on a public holiday. I need a phone number. They need to be aware, I am teaching them what I feel is reasonable. My predisposition is to imagine the worse.

***

C:I became frightened about chest pain. I had a CT. It was clear on the chest but they found lesions on the liver. These lesions are tiny in the scheme of things. I rang them up as I couldn’t bear to wait for the results to come in the post. I made the woman read the letter out to me over the phone.  She said, ‘New line….Oh I’m sorry that’s part of the dictation, that shouldn’t have come out.’ And I’m thinking, ‘Oh my god new line!’ She read it all out to me, ‘They are suggesting you should have an ultrasound, that’s best way to get a closer look at the lesions. We’ll book you in and you’ll get your results in a couple of weeks.’  I’m saying you can’t leave me for two weeks having told me there is something wrong with my liver.  I had the ultrasound and I went up and asked for my results straight away.  She said, ‘Honestly I can tell you right now you’re fine.’ It’s a bonus she didn’t say, ‘I’ll write a report.’ She told me straight away.  So that’s where I am.

L:Have you heard of incidentalomas? That’s when an image reveals another unsuspected thing, not related to the reason for the investigation. It’s a real problem because the question arises of when to take action. What’s the threshold? Many of us have all sorts of small benign lesions that we live with our whole lives and never need to know about.

C: I have been cleared through all these images, I felt reborn. Other things may be hidden but there are no visible signs for me to be concerned about.

L:So imaging is part of recovery. But then you need more and more imaging to remain reassured.   What about this process now, between us? I am concerned that it might be upsetting or traumatic.

C:It was only on my way here that I thought this might be quite upsetting and I thought, ‘Am I ready for this?’ But knew what I was getting myself into. I didn’t have any expectations. I’m glad I’m doing it. It’s hilarious that the reason we know each other is because we were both teaching visual literacy, and here we are, looking at this great big screen, and it just seems quite funny that that it’s all conjecture.  That’s a big, therapeutic blank space to put all kinds of anxieties, angers, loss. The archaeological dig of treatment.

L:A gap that invites speculation. It’s creative but also upsetting.

C:Frightening. Exhausting. Because it’s a pit. The brutality of those staples. It’s a grief.

L:And this isn’t just about what’s in the past. It’s still ongoing.

C:This is still very much ongoing.  I saw this envelope and didn’t bother opening it, and it said, out of the blue, ‘There has been a slight change of plans since you were seen by my colleague, Dr Visiole on Wednesday. Though we have the reassurance of the ultrasound of your liver, confirming that the lesions in your liver were simple cysts, as your pain in the sternum is ongoing, we would like to perform a bone scan. If you have any questions in the meantime do not hesitate to ring us.’ It’s next Monday. Nuclear medicine. A radioactive injection at 10am, a whole body scan at 1pm, then torso diagnostic at 1.30pm. The whole day. It sounds fucking horrible.  So I’ve got this to look forward to.  More stuff for your project.

L:Are you taking someone with you?

C:Well it’s a real bugger as the whole point of it was to get reassurance.  So like you say, they then find things that then escalate to other things, so the CT scan cleared me of what I was concerned about which was the cough, but then they discovered the liver. The liver then got cleared with the ultrasound, I went in and saw this new bloke, and I will read you his letter. Somewhere along the paperwork they forgot what I originally came in for. Now someone has realised this and asked if they know what is causing the pain in the sternum.  I thought I had got away but now they are saying check the bones, we haven’t thoroughly checked for bone cancer. Let me just read what this new oncologist said in a letter dictated on the 21st, which took two weeks to get to me: ‘Just a note to keep you up to date with Mrs Collison who I reviewed today……I have reassured Mrs Collison. This lady is extremely anxious and……’ And I think, hang on a minute, that sounds like to me like a criticism that I’m anxious.

L:It reads like it is unreasonable.

C:Yeah it does. Why wouldn’t I be? Why the hell wouldn’t I be anxious?  I have been trying to find out when I will get the results but no-one has got back to me. An open pit again. Are they actually going to tell me I’ve got bone cancer now? That’s the case for a lot of people I know unfortunately, who started off like this and now have bone cancer, so it’s not the craziest thing to imagine.  I don’t think that’s being ridiculously anxious.

L:Yes, you’ve been here before.  Have you got someone going with you next week?

C:No

L:You should Claire, shouldn’t you? Sorry, I shouldn’t use the word ‘should.’

C:No you shouldn’t [laughs]. I just feel it isn’t a spectator sport. What happens if my partner comes is that he gets anxious about allaying my anxiety. And I feel guilty that I am being impatient.  I need to be just be what I need to be.  Before the anaesthetic for my mastectomy I did all the meditation, it didn’t help at all.  Considering this is supposed to be reassuring, the process to get to it is awful. You can see why people say ‘I’m not having any more treatment.’…..I’d like someone who knows what these images are to go through them with me, and to say, ‘You see that there, that is because of this.’ I’ve never had anyone do that with me.

L:This process highlights that deficit in a way.

C:Yes it does.  I feel like I’m a passenger in some car you haven’t driven before, and we’re going on some kind of journey without a map and just trying different buttons to see if we get there in the end.

L:Who is the driver?

C:You are the driver because you’re sitting at the computer and using the software. You are changing the images and deciding which ones we stop at.  I don’t know what they are of, I don’t know what I’m looking at, I don’t know how to read them, and all I can do is fill in a story of what happened when I had that thing, why I had it, what they found, and on a timeline, chronologically where I am in my medical story because of it.  Aide memoirs to my story.

L:It’s a further disconnection that you’re describing.

C:Yes I think so. These ones [images] are particularly disconcerting because they just look like a lunar landscape, or actually look like a cross-channel view of the sea. Really unpleasant water that you wouldn’t want to fall into.

L:The position is disorientating, it’s as if we are looking down. What you say also brings up a concern about this process, and what its value might be. Can anything useful be recuperated through this? If seeing these images doesn’t help resolve or improve anything, then it’s in danger of just reproducing those bad experiences.

C:I imagine that when you are looking at, say a knee injury, there is a much simpler story of pain, evidence and recovery.  But mine is ongoing.  We could be looking at what’s going to kill me and we’re just sitting here and chatting in front of it, and I have no idea.  We’ve got these stats down the side, and there the word breast, my name backwards, and a load of software stuff that I am utterly non-plussed by.

L:Cultural writing on medical imaging talks a lot about transparency and visibility. But transparent to who? Visible to who?

C:I know my breast very well but not from the inside.  That doesn’t look like a bit of me, to me. Whereas the outside of it, yes.

L:Imaging doesn’t always eliminate uncertainty does it? In some cases it seems to increase it. I’m concerned that this is making you feel vulnerable or more vulnerable.  That it would seem to promise something it can’t then give. Or stir things up.

C:I guess what we were originally thinking of was issues around who understands these images, who are they of, who has control of them, and how they are communicated, so looking at them intensely….ooh look at that. That’s like an old stereo. Wow is this a film….

L:It’s like a GIF.

C:It’s like a stereo image, how exciting. We need some goggles. I don’t think you should worry that this is somehow abusive.

L:I am.

C:Well don’t.  I am completely complicit in this. See that is my recognisable one, it’s like a triangle.

L:My own incompetence with the technology isn’t helpful.

C:Well you’re not a radiographer, so this isn’t your strongest suit.

L:Thank you for saying that I shouldn’t worry.

C:In a counselling session I could invest you with all the things that have made me cross and all the people who haven’t taken duty of care.  I could rage at you for doing all the things that other people have refused to do – listen, know my name, check in with me. But actually most people have been fine, they have been lovely, my main oncologist is absolutely brilliant. It’s just the system is so unholistic. Its no-one’s fault.  The frustration of imaging is that it goes through so many different people: front-of-house, technicians, appointments, processors, people who interpret. The whole thing goes on behind the stage, behind the scenes that you’re not party to. They have to have enough time to do all that before they come back to you. The patient isn’t party to any of that. So I guess what we are seeing now is the bit that we are not party to.

L: Yes, a complex process that you are integral to but actually quite passive within.

C: They haven’t actually shown me on the screen whilst they are talking to me.  I’ve got a really beautiful picture. The surgeon drew my breast, and put marks on it to show me where the tumours are. That little hand drawn picture was actually much more useful to me than any of this.

L: The dynamic between us has been constantly shifting, between me looking at you and you looking at the screen, to me looking at the screen and you talking slightly behind me, which in a way mirrors what goes on medically.

C: Yes imagine this is our consultancy appointment, I come in and this is in the background and you’re talking to me.  I’m investing in you this authority. You sit with the screen behind you, and you say, ‘I understand this, and I’ve been looking at the insides of you. You can’t possibly see in and understand.’

L: Part of the authority of the image comes from medicine. The story of photography’s relationship to ideas of truth comes in part from how it was used medically.  But actually imaging doesn’t eliminate uncertainty.  I think there is disagreement as much as there is agreement about the interpretation of images. It’s unnerving to realise medics are often operating in thresholds of uncertainty about what may or may not be normal.

C: Yes and the learning is continual. What they look at now with concern may have been of no interest before.  It feels like we are at that stage.

L: There is a huge investment in computerised learning; to try and improve the accuracy of diagnosis.

C: Until I began this process it hadn’t even occurred to me that imaging is double-edged and not necessarily reassuring.

L: It makes everything visible.

C: Well it makes visible nothing as well. You know it makes visible stuff that you needn’t worry about.  I volunteered to be part of a project where an Argentinian man photographed 23 women who’d had breast surgery, to be subject of his gaze. I wanted to explore what it felt like to pose for someone. I’ve learnt a lot from that experience about consent.  He has certain non-negotiable ideas about who owns the material. With us there is much more room for discussion. All the implications of putting this material in public, and taking it into new contexts.

L: The idea of the image being in the background, or beyond reach has come out more clearly today. So this process is partly about reaching towards the image and reclaiming it in some way.

C: Well yes, and what’s important is how you are in control of it. How other people use it and in different contexts.  The minute it is on a website anyone can use it. If we make an image together out of this I want it to be bulletproof. So that it can withstand being seen out of context.  I am active and I am multiple. So you can’t have the iconic me.