The following is a narrative written as part of an ongoing research project. Drawing Women’s Cancer (See Link to separate site in Blog Roll) brings together the artist, the scientist, the clinician and the patient and in addressing all four gynaecological cancers, it communicates through visual language, the experience something that is often difficult to verbalise, something that is even considered ‘taboo’ given the nature and specific bodily location of the particular disease. Knowledge generated through a visual interpretation of individual experience is here used to generate, in turn, an enhanced public awareness (which surely can be considered a form of knowledge) of the disease and its impact. And so, where meaningful understanding and acceptance can be elicited in this way visual language becomes the voice that can ‘speak the unspeakable’.
The Artist and the Scientist
I have tried to study, I have been cramming my head with facts and learning a new language from new books and Internet trawls. Amazon profits on my anxiety while medical sites are stacking up in the bookmarks file on my Mac.
She is so very young looking – a blonde whirlwind. I watch her race across the concourse at the hospital reception towards the kiosk in the corner. It feels like an airport in here. Lots of shops and cafes, but there are no carefree smiles, no uniformed flight attendants waiting at the gates, no suitcases bursting at the seams with stickers and coloured ribbons tied to the handles. Instead there are careworn faces, brave smiles, white coats and blue nurses uniforms. There are people bound in plaster casts and wheelchairs, families and friends carrying magazines and overnight bags. I watch as I sit, quiet, sipping on a regular Americano in Costa. Is that her? If it is her, she will wait – right by there. ‘Meet you at the reception’ she had said, as if she was afraid an academic, an artist, would get lost in the vastness of this clinical space. She was probably right.
She stops, waiting, looking at her shoes – tiny ballet pump kind of things. Are you Tiff? I ask and her huge smile lightens the concourse. We race off at her speed to the labs.
‘You need one of these I’m afraid’ she says apologetically as she throws me a white coat. ‘This is where I am. This is my room’. A small room, almost claustrophobic both after the expanse of the concourse, and in comparison to the parameters of the lab it was clearly once a part of.
‘May I record this?’
‘Yes of course. Well, what do you know about vulval neoplasia?’
This is my chance, my opportunity to impress her with my new-found knowledge, but I do not do well. Not dying cells really, but rather cells that are abnormal. There are three grades of VIN, which can progress naturally and inexorably towards vulval carcinoma. She shows me VIN 3 cells, the lines cloned from an original biopsy taken from a patient with HPV infection. HPV: Human Papilloma Virus. Her project is an exploration for a ‘treatment strategy’, an extension from a pilot where Cidofovir as a topical cream was applied to the infection site by twelve subjects.
‘I think the regression from VIN 3 to VIN 2, 1 or normal was high so there is potential there’.
She is so enthusiastic, so excited even, and totally involved in her work. Her cells contain HPV16, an infection that differs in type if not in result from lichen sclerosis. The pilot was interested only in HPV16. We talk some more about what she is doing.
‘What does that actually mean – cold knife surgery?’ I ask.
Tiff screws up her face as she explains excision. ‘A lot of the ladies, they get recurrent disease. They go back, I read that some ladies go back two or three times.’
She pauses – the room seems to take on even smaller proportions as she forces herself to think outside its objective, scientific comfort zone.
‘I can’t imagine what they go through having their vulva removed. Especially if it’s extensive. It’s psychological, psychologically…sexually demoralising. If it were me I think I would want to keep myself to myself for ever.’
‘In the pilot study’, she tells me, pulling herself back into the safer, scientific world, ‘the results were encouraging so, ‘they decided they need a large scale study to see how the drug works…so that we can see – clinically – if its having an effect at a molecular level how exactly the drug is causing that regression from high to low grade or, you know….’
She pauses again. This time for a less emotive reason. I know that she is struggling to find the language that I can understand. The layman language. It is strange how so much of what she says is resonant of horticulture, of working with nascent life. She talks of growing, of nurturing, of cultivating. She talks, even sings to her cells and they respond by multiplying and replicating – blooming?
The flow of information is relentless. Tiff speaks as fast as she moves. I move a little slower.
‘How many ladies?’
There are around two hundred subjects in the study which, she explains, is not just about Cidofovir but also about a second drug – an immune response modulator which helps activate the body’s natural immune response to drive out the HPV virus.
As she goes on to explain the details of the intricate processes of cell culture I understand how much she is struggling to keep the technical language at a minimum. She talks about biopsies, about previous studies that have led to hers, about creating cell lines stored in liquid nitrogen waiting for her to create populations of clones in the bottom of small glass dishes, or ‘plates’. She talks about ‘passages’, about dosing and counting, selecting and quantifying, about ‘stripping off and about extracting DNA and RNA. She wants so very much for me to understand and I am so very glad of the reading that I did beforehand. We get to the difference between true cancer cells and the ‘primaries’ that she is using. These come directly from the neoplasia biopsies taken previously and are therefore, although abnormal, not yet cancerous. These are ‘mortal’ cells – they can die. Cancer cells however are ‘immortal’. They have the innate potential to proliferate very rapidly and continuously.
‘Have you heard of HeLa? She says. ‘These cells would just grow, grow, grow.’
During Tiff’s explanation I am peering through her microscope at cell structure in different stages of growth and development and images begin forming in my mind that blur the spaces between her words. She mentions a book, a life, a world in which cells are taken, without the patient’s knowledge or permission, from a cervical cancer tumour. These cells, now a global phenomenon, are bought and sold on the commercial medical research market. They ‘grow and grow and grow’, and have been the catalyst for many a breakthrough in medical science. Henrietta Lacks has become a figure looming large in my visual reverie.
Tiff brings me up short with ‘So,’ and verbally hurries on, hardly drawing breath with me running alongside as best I can.
‘I am not using the immortalised lines that Aine is looking at’ (Aine, a fellow PhD researcher and my next interviewee). ‘I’m using the VIN lines so that at the moment I’ve got a thousand in there’ (she points to her fridge) ‘waiting to start a dosing regime and I’ve done one before and also validated it and we did cell counts after dosing and there’s a reduction in the number of cells which kind of ties in with the apoptosis because it means that the cells are dying.’ We both draw breath.
‘So’ (again) ‘there is a reduction in cells but we have to look at it in more detail. There are particular stains you can use that stain the membrane and that can tell you what is happening and I will be going on to that at a later date.’
I am becoming more and more fascinated as she continues to tell me details of what she is doing and what she expects to do. We peer together at microscopic cell structures and she bemoans the fact that there is ‘not much for you to see’, especially after she had so many more growing cells the week before. She explains methods of counting cells, how she counts them in a grid down a microscope but how ‘flow cytometry’ which uses a laser beam is a far more accurate way. I have a picture in my mind of cells flowing one by one through a tube as a laser counts each and every individual stained with something called ‘annexin’. These are precipitating apoptosis – their own death. These are mortal cells.
She goes on to tell me about a further project that is being carried out but she becomes frustrated, self-conscious.
‘This is confusing. I’m saying things so simplified. I’m saying things so wrong!’
I need to reassure. We move into the personal, toward womanhood and away from the scientist and the artist. I ask, cautiously. ‘How far removed do you have to be from that sort of thinking, in doing what you are doing, I mean actually relating the human experience of the disease to what you are trying to do. Do you have to cut yourself off from that?’
She pauses, sighs, draws breath again. It is as if she had been waiting for this.
‘OK, when I’m in the lab it’s just the lab and in the papers I’ve read about vulval disease and the surgical techniques it is never very close to me, its never very emotional. About a year ago I was in the office typing up and there was a knock on the door. It was a VIN patient. I’d never had any contact with anyone with VIN, I didn’t see anybody in any clinics because I’m not a clinician, I’m a scientist and I’m literally in the lab all the time so the closest I’d been to VIN on a clinical level was reading a paper about the disease. She came in and she was the loveliest woman ever and Aine and I were both there, and it was so emotional, and it made me and Aine, both of us think, actually think, about the disease. Not that we don’t normally think about it, its just that when you see someone in front of you who’s been through vulval surgery, and how grateful she was, coming on about sponsoring the department, “I sponsor the department all the time. What’s your project? I am so grateful to people like you.” I don’t know, it made us feel that we were doing something to help on a daily basis because we don’t see the disease in patients everyday we are just literally doing our work. When I met that lady it really, really, really made me feel quite good about what I’m doing. It was a bit emotional because I’m a woman as well and you do think, you do relate things to yourself, and Aine and I both said it made us realize what we are actually doing this for, rather than just a list of projects.’
Tiff’s whole persona has changed. Her voice has a softer edge, her speech is slower, she has a wistful look. We talk about my work, about the allusions to gardening. She becomes excited again and thinks of her cells.
‘I wonder if you want to see some more cells. I don’t think I can show you right now, they’re not grown.’