CERAMIC OBJECTS (2)

QUEEN ELIZABETH UNIVERSITY HOSPITAL BIRMINGHAM

Naturally the ‘crash and burn’ episode in September gave the hospital no option but to stop the second treatment. This left me with nowhere to go until new drugs and treatments to beat Hepatitis C became available. So I continued attending the monthly clinics to monitor my condition and manage the drugs I was still taking rectify the ‘fallout’ from Bali.

In December 2011 my clinical nurse at the hospital retired, and the Gastro-enterology department started using locums to make up the shortfall until the department could be re-organised. While all this was going on though, that one anomaly in my blood results still remained. It was called AFP (Alpha-Fetoprotein) and my levels were very high. Possible reasons for this were explained to me back when I first entered Gloucester’s care, and there were only really 2 known causes of the kind of levels I was registering. Either a) I was pregnant, or b) there was a tumour present, somewhere, probably in the liver. This tumour, despite all the tests, scans and screenings was proving difficult to locate. Fortunately for me one of my routine Gloucester clinic visits put me in front of Dr Trupathi, a visiting locum helping out from Queen Elizabeth University Hospital Birmingham. This hospital was universally regarded as a centre of excellence for liver related issues and one of this country’s main transplant centres and teaching hospitals, if not in the whole of Europe. 

Dr Trupathi took one look at my medical notes and said he was going to refer me to Birmingham for treatment, and I attended my first clinic there in June 2012. Upon my arrival at Birmingham the team immediately zeroed in on this high AFP level in order to find the elusive tumour. They then conducted the same sort of thorough investigation the CIA must have waged in finding Osama Bin Laden. And in both cases the intention was the same, to seek, identify, and then destroy the bastard.

It was finally an MRI scan on the 20^th September that found where the shit had been hiding. I did receive a phone call from the hospital first to warn me of this discovery, but the clever way this was confirmed in writing gave me some encouragement and hope,

"(...) the MRI scan performed in Birmingham on 20^th September showed a very suspicious area in the liver which very likely represents early liver cancer. The Multidisciplinary team discussed the possible approaches to the management of this. Because of your underlying cirrhosis and early liver failure, we think that liver transplantation is probably the best way forward".

OK? But what to do, jump for joy because they had finally found a cause of potential major concern, or panic because I’d just been told I had cancer?

2nd ATTEMPT AT TREATMENT

The start of this 1^st treatment was also accompanied by the start of weekly/fortnightly visits to the hospital for blood tests, to measure how successful the drugs were in combatting the virus, plus of course the personal check-ups to see how you were coping. Not only did I not cope well, it turned out the drugs were having no effect on the virus, making me a non-responder, and as such, I was withdrawn from that treatment after 9 weeks. So it was back to the drawing board and in the meantime, carry on rewardless with all my other medications until a new programme to treat the virus could be found.

This arrived a year later on Sept 6 2011 when I was placed on a second treatment that repeated same old drugs plus a new one. The thought of this made me a little apprehensive because besides the excitement of taking the same medicaments again, there were apparently additional delights attaching themselves to the taking of the new one. So delightful in fact this new combination proved too toxic for my body to withstand. A rash associated duly arrived and quickly spread over my body. In addition I became really ill, so much so that after a routine hospital visit for blood tests, we were phoned by the doctor the following day when the results came and told to get to the hospital urgently.

I re-entered hospital in Gloucester on Sept 26^th with something called ‘deranged electrolytes’. I think that meant my kidneys weren’t feeling too well after the barrage of new drugs. But if you are going to be rushed into hospital for some reason, what better than ‘deranged electrolytes’ to enter with! I thought that sounded pretty cool. I stayed in hospital until discharge on Oct 4^th by which time I was considered stable enough by the doctors to go home again. I was pretty much unaware of what had gone on in there as I spent most of my time drifting in and out of the drug haze of the treatment and recovery medicines. They had virtually turned me into a zombie.

PROBLEMS ORGANIZING THE RECORDING

As I have already agreed with Kelvin and Vivien that the final piece for the project will be a short video, I need to start organizing everything for it to happen, basically I need to book a studio at the Moving Image department, at the RCA. As the end of the year is getting closer and the end of the term as well, Bruno and George, the studio technicians have made me aware of the lack of time slots available, as everybody has already booked and the moving image students have a preference for the use of the facilities. In the end they've been only able to find me a morning slot at the big studio. I have the intention to record both Kelvin and Viviven with a green screen as background, to be able to work with a Chroma effect and be able to manipulate their images independently from the background.

My organization problems start as I contact my friends to check their availability to travel to London and record on the day I've managed to book, and it happens that Kelvin has had an accident, in his own words,

"Regarding the project, we're still up for anything but please bear in mind I'm operating with restricted mobility at the moment as I had a nasty fall last Thursday and got pretty much banged up. I'm getting a bit of mobility back after 4 days and should definitely be near 100% when we return from Tunisia Dec 7th.

If you need us before then please bear in mind that physically I won't be able to do much, doctor advises me not to let my mind make any more promises my body can't keep! I am improving every day but to get the best out of me physically, best to wait 'til after Dec 7th. If it's just my mind you need, I'm ready whenever you are".

The project is a really important thing but health is the most important thing now, I can't make Kelvin travel as he is feeling now, there's no point. I go back to the studio and very kindly the technicians do their best to find me a new slot, although this time I will be only able to use the small studio as the big one is fully booked until the year to come. At the small studio we will only be able to get half body shots, anyway it will have to be this way! 12th December will be the day, I'm feeling excited and also very insecure, video is not exactly my field of expertise although I have used it before.

FIRST CERAMIC VIRUSES

Without a clear idea of what the final piece will be I've started making some ceramic objects, inspired by the images I've been researching about the Hepatitis C virus and the cirrhotic liver you can get as a consequence of it. Instead of the clean, cold and beautiful 3D medical representations I've found, I am trying to make them look rough and organic, disease is not an easy thing to go through, I want my objects to look more human, more uncanny.

TREATMENT

Before the treatment was due to start I was given information about the two drugs I would be taking. Apparently different patients react to these drugs in different ways, and the type of reaction could be affected by how fit you were, how long you’d had Hepatitis C and how much damage had already been done to your liver because of it. Reading the list of potential side effects didn’t inspire me with optimism for the process. Unless of course you fancied the odd bit of fatigue, a few headaches, some flu like fever, nausea, anorexia, diarrhoea, depression, irritability, insomnia, itching, rashes, alopecia, coughing or anaemia. Not a course one would happily embark upon unless there was no option, but without treatment Hepatitis C can end in liver failure and death. If your heart, lungs or kidneys fail, modern equipment and medicine can take over to replicate those organs function while the problem is alleviated or repaired. In these cases the doctors can use a heart pump, lung respirator or dialysis for the kidneys. But nothing can take over from the liver. If you have a problem, you fix it or die. This makes your liver a unique organ and worth looking after.

By Sept 2010 I’d been feeling poorly for so long it was a no brainer for me to accept the treatment. Duly on Sept 21st 2010 we arrived at the hospital and were shown how to inject one of medicines while the other should be taken orally, and these new drugs were to be taken alongside my normal daily medication to control all the other complications I had related to Hepatitis C, which already had their own list of side effects. Fortunately the strongest one was only an injection once a week. But within 24 -36 hours of taking it I would feel much worse. The nausea, anorexia and headaches could double in intensity and my head felt like it was away with the fairies.

Other sufferers I subsequently met referred to one of these drugs as ‘Interference’, because it scrambled your brain. When you’re feeling nauseous, depressed and fatigued, you’re not sleeping; you’re itching, anaemic, full of a cold and have diarrhoea, then the last piece in the side effects compendium…. irritability can understandably sometimes manifest itself as rage, and this was felt by many sufferers I later met. Personally I never felt depressed and my own irritability never progressed to real rage, but the rest of it was all there. This programme of treatment was to last for 48 weeks, which made it feel like I was standing on a shore looking way beyond to a horizon still one year away and knowing I would be feeling this crap all the way through it. The prospect was outrageously daunting, but I accepted the price as one to be paid if I wanted to get better, and I desperately did. So I just focussed on the future. A future with me still in it and returned to health, playing an active and healthy part in it.

TAMSIN VAN ESSEN MEDICAL HEIRLOOMS

The subject of art and disease is quite new to me so I have started making some research about artists who use disease as inspiration for their artwork. My colleague and ceramic artist Tessa Eastman has send me a link of an artist called Tamsin Van Essen.

Tamsin developed a series of vessels called "Medical Heirlooms", which was inspired by ancient apothecary jars. As she explains on her website, her work "explores the stigma of diseases, questioning contemporary obsessions with perfection and beauty", using "the metaphor of vessel as body", she applies glazes, finishes and deformations to her pieces as to emulate scars, blemishes and skin defaults.

MY NHS EXPERIENCE

My own experience of the NHS has been a very good one, beyond my wildest expectations in fact. It almost feels to me as if a red carpet was put down to receive us from the moment we landed back in the UK. I couldn’t possibly have asked for better compassion, understanding, care and treatment during the four and half years I’ve been under its care with this disease. I’ve paid sufficient dues in my working life to qualify for the full state pension when I’m 65, so although I feel my treatment within the NHS has been earned, I still can’t help but feel pathetically grateful for it.

St Luke’s surgery in Stroud received me in to their care with open arms, and my GP Mike Gould turned out to be a light bulb in the middle of my darkness, he really helped me understand what was happening inside my body, and treated me for everything that fell outside the remit of the liver team at Gloucester Hospital who were the primary carers for my Hepatitis C condition. Over in Gloucester I was at the hospital on virtually a weekly basis as the doctors battled to identify the amount of damage Hepatitis C had done to my body. My liver was clearly not in good shape, there had been some kidney damage and the linings of my oesophagus, stomach and intestines were affected too.

Over the course of the next 5 months (April – Sept 2010) I underwent regular blood tests, Ultra-sounds, MRI scans, CAT scans, Biopsies, Gastroscopies, ECG tests (heart scans) and medication adjustments. These tests eventually gave the doctors a clear enough picture to decide on a course of treatment. This watershed in analysis notwithstanding one anomaly in my results the doctors couldn’t fathom, but that anomaly suggested I had a tumour. None of the tests showed where the bleeder was hiding and nothing else they tried could coax the little bastard into popping its head over the parapets to identify its position. Sneaky, sneaky, just like the virus itself, although to be fair, that sneakiness is basically the job of a virus and you therefore can’t blame it for doing its job!

So tumour or not, by early September a course of treatment was finally prescribed and I was called to the hospital on Sept 21st to ‘begin the journey to cure and recovery’. But by this stage I had become very weak and it was an effort to get out of bed, even for hospital visits. I was completely unable to drive; experiencing extreme tiredness, I had no appetite, suffering bad headaches and losing weight.

Apart from that everything was ‘A’ OK.

HEPATITIS C, THE VIRUS (2)

These days I've been making some more research for the project on the Internet. Again I have been looking at images of the Hepatitis C virus. The 3D images of the virus look so attractive, no one would say it can be so dangerous for your liver. These images show a very softened idea of the real consequences of being infected, they look so aseptic, so neutral, beautiful and colourful. When I look at these transparent pointed balls I cannot stop thinking there is a terrible contradiction between them and the experience of Kelvin thinking he would die as his liver was so damaged.

These images make it easy for me to understand Kelvin's confusion when he was first diagnosed in Bali with the disease and had no idea at all what the consequences of this would be. Looking at these images I feel the virus looks like a design for a pinball machine more than a threatening element that can deteriorate your liver to death.