• Create a glossary to define the terms that are most helpful in understanding your practice and research. 

Identify words that describe your practice or that you come across through your research. Unpick these terms by researching their meaning, and state it more clearly in your own words. For instance if you describe your practice as ‘intuitive’, what do you mean when you use this word? In what ways is your practice or research intuitive? Can you describe what happens when you are being intuitive, and can you find examples of how other people describe intuition in relation to their work? 

Use the words in your glossary as key terms to search for other writings, ideas, theorists, or contexts, to help support your understanding of your work.

You will want to return to your glossary throughout this unit, so pick an approach that is durable and works for you. You may find that your understanding of key terms changes as you progress, so return to add new meanings, and to revise your definitions.

I have created this glossary which I will maintain as part of my research entries in my blog.

Medical terminology

There is a host of medical terminology which I think of as cold, descriptive, complex, often difficult to pronounce and spell and where meanings and nuance between different terms isn’t always clear. I am also away that through experience the use of such terms becomes normalised but at the same time that such terminology represents a barrier for those “within the club” and “those on the outside“. One interesting piece of feedback on assignment 1 was to record my thouights. With that in mind I will record some of the medical terms relevant to my experiences and also how they make me feel.

Neurofibromatosis – A genetic condition of the nervous system where tumours form on the nerves. The condition varies greatly from producing clusters of freckles or birth marks (called café au lait spots), tumours on or under the skin, problems with the bones, eyes and nervous system, learning difficulties and cancers.

How this makes me feel? Anger, frustration, worry and stress. This been a terrible disability for my family. My daughter died from a cancer due to this condition, my son currently in hospital and his life been radicially shaped by condition with tumours, disability, operations and learning difficulties. He just had his third operation this month involving opening his stomach and head. Surgeons have opened his skull more than 10 times. For me who doesn’t have this condition I look on as helpless observer and worry and stress and don’t sleep and have headaches that last days. For my wife, she also has health issues and for her father he blamed himself for passing on the condition. At same time from an artistic perspective, this condition has shaped my life and pushed me in certain directions.  While writing this, the term café au lait spots struck me and how that the name for a kind of coffee is used for a genetic condition. This is interesting to consider something as ordinary as a cup of coffee being used to describe medical conditions. I am interested in the symbolism we use to help us think of disease, death and loss and this is perhapsd another example that build on my blog entry under symbolism and boxes.

It is strange to me as I been working on this subject how I can shift my viewpoint from the raw emotions to things as apparently banal as colours of cups of coffee. I used to feel guilt in thinking in this way as if I was being disrespectful so it is interesting how focus can shift and how time changes perceptions.

Malignant Peripheral Nerve Sheath Tumour

As with many of this medical terms they can often be shortened. Here to MPNST. This is part of why I dislike medical language and their scans and diagrams. It is far too cold and technical. Where is the person in something as stark as the letters M, P, N, S and T? A nerve sheath tumour is a tumour which grows on the soft covering around a bundle of nerves. Imagine something pressing on a nerve in a tooth and how painful that can be. Now imagine pressure on a whole bundle of nerves. This is the tumour which killed my daughter. The thought of this tumour and the vast pain it caused my daughter is a difficult thing to express. At one stage, the NHS in east central Scotland kept running out of some pain medications in part because of the huge volumes of pain killers she was on. I feel anger in a way. Anger that we allow humans to suffer when we would find a kinder way to deal with animals if they in such pain. Combined with my anger is a selfishness in not wanting to let go. At same time as I share these thoughts, I find myself thinking of the structures of the nerve bundle as maybe being like stems of a bunch of flowers. My tutor phrased this as, “the representation of something very visceral but also inherently visually abstract.” I find idea very interesting so will explore it further as its own entry in my research blog.

Glioma of the optic nerve and chiasm

My son developed a growth (a glioma) on his optic nerve. This shows that no matter how fine the nerves might be, they are prone to tumour growth. The tumour was treated with chemotherapy. This was my first experience of cancer wards and oncologists and the whole atmosphere surrounding those places and the people who inhabit those spaces. In the 16 years since that time, it has all become very familiar to me. Robbie was treated with an 18 month low dose course of chemotherapy.  I remember being terrified and at same time quite cowed when speaking to doctors with their medical speak and not understanding how they could work in such places.

Pilocytic astrocytoma

As I write this I smile, as in my mind’s eye it almost sounds like it could be the sunburst of a rare flower coming out in the sunshine. Different then from the flowers and plants which I been thinking about which are associated with death and loss. A pilocytic astrocytoma is not a flower but a brain tumour. For my son it grew in the middle of his head in the cavity of his ventricle which is shaped a bit like a croissant. The body uses venticles as part of the network of communication that includes the spinal chord and these are filled with cerebrospinal fluid (CSF – another acronyn) As the tumour grew, it blocked these cavities and stopped communication. This tumour was a fatal one if untreated so was treated with surgery, or in medical speak surgical excision. To get to the tumour the surgeon had to access through the brain, cutting some blood vessels and causing brain damage. From a boy who could walk and talk, count and laugh and play, after the operation, Robbie was blind, could barely talk, wheelchair bound, couldn’t toilet himself and so on. With brain injury, these impacts were not immediate but came about slowly. This operation and the outcome produced different set of feelings from his earlier chemo therapy. I thought of the surgeon making life and death decisions and about the quality of life. I thought, unkindly of the surgeon making life and death decisions and of playing god (even though I am very unreligious and do not believe in any gods) When waiting for the long surgery to complete we walked the streets, waiting and trying to pass time. On reflection this showed my that sometimes we don’t have all the answers and echoes a point made my my tutor when giving feedback on assignment 1. A piece of work such as mine is unlikely to have an ultimate answer and that the work itself and the journey the work entails and the questions asked might hang forever and might even just raise more questions. The idea of a delayed reaction to the medical intervention is interesting in an artistic form. I think of a complex book or visual work. Maybe as time passes, different perceptions form to the viewer and ever to the artist. Is this what can happen when artists work on a project for an extended period of time? The work changes and evolves?

Shunt

A shunt is such a small word. In medical parlance , a shunt is a hollow tube with valves which release cerebrospinal fluid (CSF ) from the brain when the body unable to regulate the pressure of CSF itself. The shunt can release the fluid to the stomach cavity, to the lung or to the heart as as atrial shunt. My son in hospital just now as his shunt stopped working (which is left untreated builds pressure in brain and like the pilocytic astrocytoma, leads to death). What is interesting to me here is the idea of a shunt or a pathway being blocked, or in botanical terms, a blockage in a pathway to the flower which might lead to the flower withering. The many parallel ways of thinking of such things and how we might use unrealted artefacts are worth further thought.

Chemotherapy

Chemotherapy use stems from the effects of mustard gas which was used by both sides during the Great War. During research, people exposed to mustard gas were seen to have a low white blood cell count due to the mustard gas attacking cells in the bone marrow. It was proposed that if mustard gas attacked healthy white cells, it could also attack unhealthy cancerous cells. Initial trials used Nitrogen Mustard and chemo therapy to this day uses drugs based on this chemical weapon (Hazell, 2014)  This is a brutal teatment which can lead to hair loss, sickness, amaemia, increased risk of bruising, swelling, painful mouth ulcers, possible nerve damage, hearing loss, risks of blood clots, tiredness and more. (Selchick, 2022)  To combat some of these symtoms, patients might be given various drugs which in turn can lead to further side effects. Chemotherapy is described medically as being delivered in cycles. A cycle might consist of a week of drug therapy followed by 3 weeks of rest.

Radiotherapy

Radiotherapy is one of those things where science and medicine cross over. Radiotherapy is a branch of physics rather than medicine. For the patient, radiotherapy uses high dose radiation focused to try and kill or shrink a cancer. (Bernstein, 2021) Radiotherapy isn’t always a cure but is sometimes used as part of end of life paliative care to try and ease symptoms. When getting radiotherapt the patient’s skin is marked with ink to aid with targetting the radiation much in same way as a tattoo. The crossover here bewteen art and medicine is interesting to me. The idea of a tattoo ‘dartboard’ comes to mind although in reality the ink marks were just some dots.

Both chemo and raidotherapy I think are horrid things which I have negative connotations of. I think of the old term, “kill me or cure me” and am horrified that my children had to go through this.

References

Bernstein, A. (2021) Types of radiation therapy: How they work and what to expect, MedicalNewsToday. Available at: https://www.medicalnewstoday.com/articles/types-of-radiation-therapy (Accessed: 20 March 2022).

Hazell, S. (2014) Mustard gas – from the Great War to frontline chemotherapy, Cancer Research UK – Cancer news. Available at: https://news.cancerresearchuk.org/2014/08/27/mustard-gas-from-the-great-war-to-frontline-chemotherapy/ (Accessed: 20 March 2022)

Selchick, F. (2022) Chemotherapy Side Effects: 18 Ways Chemo Affects You, Healthline. Available at: https://www.healthline.com/health/cancer/effects-on-body (Accessed: 20 March 2022).