'MY HEPATITIS C JOURNEY'

Two months and a half have already gone since my first meeting with Kelvin and Vivien, it's gone so fast and now all is over, so here it is, the final result of our journey together, I hope you enjoy it!

'Kelvin Marshall was diagnosed with Hepatitis C in 2010, since then he has undergone two failed treatments, two liver transplants and a third treatment which finally seems to have controlled the virus. He is a very positive person and has always been sure his life would be back to normal after all.

My Hepatitis C Journey will take Kelvin and Vivien -his wife and best friend- through a fantastic trip, in which the act of breathing becomes a metaphor of the human journey through life and clay a means to express the unexpected route disease forces us to traverse, a walk from darkness to light, a walk that sooner or later we will all have to go through.

My Hepatitis C Journey is part of Perspectives: Art, Liver Diseases and Me, an international art project which, ponsored by the Faculty of Fine Art of the Polytechnic University of Valencia and AbbVie International, aims to give visibility to the disease, to help getting rid of the social stigma it may carry by offering positive visions of a disease, which can be sucessfully treated if diagnosed on time.'

REFLECTIONS ON ILLNESS AND PLANS FOR THE FUTURE

For the last 5 years and 2 months I’ve been living in limbo, unable to plan for a future that remained uncertain, and for the large part either too ill or unfit to do anything meaningful or worthwhile with my time anyway. That all changes now that I’m on the brink of a cure. All my reflective and contemplative moments during these past few years can now be articulated into solid plans and actions.

I’ve remained nothing but completely positive about my situation and prospects even through the darkest days of uncertainty and pain on this journey. I presume that’s somehow part of my DNA, but I’m painfully aware that not everyone feels like that. I’ve been enormously helped with my attitude by inspiration close to home, my younger brother Vincent. In 1971 a perfectly fit and healthy 17 year old football playing lad was struck down by meningitis. First the doctors didn’t think he’d live, then when it was clear he would, they said it would probably be in a ‘vegetative’ state. However, with nothing but his own determination to conquer adversity, he persevered and ended up teaching at a local school to work one on one with children with learning difficulties. He worked there for 25 years until retirement, his Christian faith sustaining him throughout. 

He achieved all this despite being left completely blind, having a totally paralysed left arm and partly paralysed left leg, all disabilities resulting from the brain damage caused by meningitis. And since then he’s survived more than 20 orthopaedic operations to correct problems caused by the paralysis, including 5 knee operations, 2 major ankle operations, hands, wrists, shoulders, legs and left toe amputations. I’ve never ever heard him complain.

It’s clearly worked for me having inspiration like that on my very doorstep, it’s allowed me to focus on courage and fortitude whenever it’s been required, and it’s worked for me. So even through the darkest moments of my own personal journey, I’ve always instinctively sensed and been able to concentrate on the light at the end of my tunnel. And now I appear to be approaching the end of this particular tunnel, what have I learned?

• Love my wife more (were that possible)
• Enjoy my family and friends more and surround them with as much love as I can
• Never take my health for granted and work harder to maintain it
• Help others whenever the opportunity arrives
• Do not leave this world with any regrets
• Fill every day with good memories, and be a bigger part of my friends memories
• Travel again to continue enjoying this beautiful planet we live on
• Don’t waste time on unnecessary things

THE 3RD TREATMENT

Looking back on the years 2010 to 2013, I was aware I had so far survived an out of the blue life threatening health scare, and although I was still ill with Hepatitis C, there was much to be optimistic about. For example, many new and wonderful drugs were now coming to the market with fantastic statistics on cure rates during trials.

Although my transplant had removed the old infected liver, the new one was already under attack from the virus. Hepatitis C is a blood borne virus (BBV), therefore it circulates in the blood, but finds the liver a perfect place to call ‘home’. So removing the old liver did not remove the virus, this had continued to circulate in my blood stream and soon zeroed in on a fresh new liver to attack. Therefore the disease and my symptoms remained, albeit the symptoms not as acute as before the operation.

So I waited patiently throughout 2013 for my body to recover and by the end of the year it had, notwithstanding the at times still extreme fatigue. Anyway, the recovery continued apace into 2014 to the point where I was chomping at the bit for the chance of another go at treatment to finally rid me of this pernicious disease. 

I knew from my conversations with the liver team at Birmingham there were various trials coming available. But obviously there would be many more deserving patients wanting places than places available, so there was no guarantee of getting on one when it came. But I did know my doctors were fighting very hard on my behalf to get me included.

Bingo, in April 2014 I’m nominated for a trial with a completely new combination of drugs and accepted onto it a programme starting in May. Blood tests taken at week 4 indicated the virus had gone, and further tests at weeks 8, 12, 16 & 20 also showed negative for Hepatitis C. I took my last pills on Sunday November 2^nd 2014 and will have to return to hospital for blood tests at 4, 8, 12 and 24 weeks to double check the virus doesn’t return after I stop taking the treatment. That scenario is always a possibility, but unlikely, in the vast majority of cases the virus is cleared permanently. My last clearance check blood test will be taken on Monday April 20^th 2015, and assuming the right result, this will be the end of being in limbo, 5 years and 2 months since I first realised something was wrong when I collapsed in Bali.

2013

It was good to be back home, but being out of hospital I was now responsible for myself. Without Vivien that would have been impossible. Simple tasks like getting out of bed were major undertakings with my stomach still extremely tender and full of staples. Going to the bathroom was impossible without help, and the effort of getting there invariably left me on the point of collapse. Trying to feed myself would have been completely out of the question.

Still we struggled through, but the twice a week visits back to Birmingham to monitor the op recovery, check the wound and take blood samples became epic journeys of travelling discomfort, both on the road and waiting in the clinic. After the staples were removed our visit schedule reduced to weekly, but the hospital visits remained epic journeys to be endured. The new medications I was now taking (28 pills a day) had my head in a spin and body in a permanent state of revolt.

A revolution intensified after the staples came out, because the scar became infected, and leaked badly for the best part of a year, nothing could be done to stop it. Any movement stimulated more discharge, plus there was the ever present threat of being caught short. Yes those sudden and imperative medicinally induced urges to get to a toilet in a rush did not leave me upon discharge from the hospital. They remained for about as long as my leaking stomach continued to cause problems. This meant there had to be a very pressing reason for leaving the house, because it was just too embarrassing for either a wound leak or pressing call of nature to occur whilst out and about or in company, and heaven forfend both would visit simultaneously. 

Hence it became easier and more comfortable to stay in bed and read or watch television. This wasn’t so bad as it was possible with some TV channels to watch never ending documentaries about many subjects I had a keen interest in. Exercise was out of the question while the wound remained open and infected, and my medical regime still had my brain pretty much scrambled. But I knew I still had to eat and made a special effort to force myself every day, even so I lost a lot of weight. I’m six foot tall with a slim build and normally weigh 70 kg. This was the weight I carried into hospital. Post operation this increased by 10 kg due to water retention resulting from the liver not functioning properly during life support and surgery, so I was 80 kg on discharge. By September 2013 I’d lost 15 kg of normal weight and was down to 55 kg. 

Therefore 2013 was a slow and very challenging year. Certainly the biggest challenge I’d ever faced in my life. But even though most of the year was spent in quiet but desperate recovery, there was much time for reflection and contemplation.

LIGHTS, CAMERA, ACTION!

Finally the date has come to shot, I feel quite embarrassed as Kelvin and Vivien have arrived ahead of me, on my defence I would say the tube was collapsed. George, the technician has helped as to get all the equipment ready, lights, camera and the green background, so we have been recording the whole morning, all breathing and being serious and also laughing, and I have poured loads of slip on top of Kelvin's head, I feel bad, I have been really lucky to meet these lovely people, they're always up for any of my silly ideas.

We were feeling a bit tired and hungry so we've decided to take a break, it seems the shot at the big studio has ended earlier than expected so George has set up the big screen there too, so in the end we've been able to get some shots of the full body. All is looking good, this has been a fabulous day, it was just a bit too sad to have to say goodbye at the end as that has been our last meeting, at least for now.

Setting up the studio

 

Action!

SOME EMAILS DISCUSSING ABOUT THE RECORDING

This is part of the email I sent Kelvin and Vivien before the recording so that they could have an idea of what was going to happen, a bit too long...

'Apart from that I feel very excited about tomorrow's recording as finally I have a more clear idea of what I am working on. My artistic process some times is a bit painful and I don't know what I am doing until the last minute, I work much from intuition which makes it a bit difficult to explain to others what I am really thinking about (as I don't even know myself in a way). So it happens that I wasn't sure about what object I could be making to represent your journey and project some images on top of it, I wanted to introduce some performative action as we talked before but nothing was making much sense. I have being working making some sketches of Hepatitis C virus in clay but very unsuccessfully I have to confess. Then I decided to start from the beginning again and re-read your texts and think about the chat we had when we meet and I guess it has been always there, in its name itself but I couldn't see it until now. You have always been talking about a "journey", a journey which has taken you outside what used to be your normal life (travelling, living in the middle of nowhere in Spain, etc) into a world of new experiences and emotions (crying, feeling weak, lost of control, anorexia, thinking about death but also hope and probably more self knowledge), and a journey it is something that has a beginning and an end, it is not like a cycle, it starts and it finishes at a point, so I thought the best kind of art to represent or express or talk about this matter should be a time based piece, that means a short video. That means I won't be making any object, the piece will be definitely just a video.

The video will be something very simple and the actions will be symbolic. As I see your journey through the disease it is not like a journey through a land but an internal journey which connects more with your emotional and personal world. I thought breathing could be a good metaphor of what means to walk through our lives, so basically I want to record you breathing. I don't need you to act, just breath, I will guide you so it will be a very easy thing to do, also I thought breathing has to do with yoga and meditation and I think this oriental-Indian world is something to which you connect very deeply. At a point I will ask you to close your eyes and keep on breathing.

When you close your eyes, I will insert images (when editing the video I mean, not in reality) of textures an places build with clay that will try to express the confusion and different emotional states through which you have been through since you realized you were infected with the virus. Then you will open your eyes again and you will keep on breathing and will leave. The journey would become a sort of dream or a nightmare as you want to see it, which as I said has a beginning and an end.

Some of my inspiration comes from this sentence which University of Valencia uses on their website about the Art and Disease project,

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

This dream I want to record will become a metaphor of this "other place" you have been obliged to walk through, but this way gets to an end after treatment.

Other references are video artist Bill Viola and animator Jan Švankmajer.

When you close your eyes I thought I would drop some liquid clay (which we call slip) on top of your head (sorry) so that it would cover your face, as if clay was the material of which this dream was made of, this slip dries out very fast and it leaves a thin coat which can be very easily clear, I thought the end of the dream could be marked by you clearing this clay from your eyes to open them again. I am not sure about doing this, I will make some tests today and we can discuss it together. I don't want you to do anything which may make you feel uncomfortable. We will see tomorrow.

Just to finish a few technical issues about the recording, bring normal clothes you like, just we need to avoid any logo or brand name, any bright green or royal blue colour, any stripes, this is because of the recording with a green screen so that I can create a fake background on my computer, it is the system they use to record the weather forecast, I am sure you have seen it before. If you want to try with the clay bring an old shirt, I have had accidents with the slip before and it has always washed out but some other people says it can bleach lightly, so better not to take any risks.

Also if you have any picture from your travels, like landscapes or city landscapes, it would be nice if you could borrow a couple of them to me so that I could scan them and use them as background for the video, or of you have them in digital format just send me the file by email, if not don't worry I'll find some myself.

I hope I didn't bored you too much with this massive email,

Looking forward to seeing you again,

Regards,

Susana'

And this is what they answered:

'We are not at all bored by your email. We understand everything you want to do and agree it seems a very simple and powerful way of communication.

Just to be clear, I have always felt so positive about my chances to beat this virus that no tears were spilt on this journey, not from me anyway, I know my family were very worried, but apart from the time I spent in Bali hospital very confused and unsure what this disease meant, I have been very focussed and positive for the rest of the time.

I will bring a selection of tops for you to choose one, I will also bring my laptop for you to select which background pictures you want from our travels. I will need access to the internet to send them straight to you in the studio, if this is not possible, I will email whichever ones you choose as soon as we get home. We have some stunning sunsets taken from the cortijo and many fab, groovy, windswept and interesting shots from our travels.

I have to say I'm quite excited by your new concept and will do everything in my power not to bugger it up, simple works for me. I can't wait to see what images you come up with as background to my closed eyes, my thoughts during this journey will be based solely on the idea of getting better and will not be a nightmare. But if nightmare works better for you Susana, you must do what you think is best for you as an artist, I will agree with whatever you want to do.

I love your piece from the University of Valencia, it's very powerful and mirrors exactly my own thoughts. I felt exactly that I was 'obliged' to identify and deal with being in that other place. Brilliant, it's a beautiful analogy from a kindred spirit.

 

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” 

Just a thought, if you think the message might be more powerful with be bare torso with the transplant scar visible, that could be an option if you prefer (unless it's freezing in the studio)!

We're both really looking forward to seeing you again tomorrow.

Kelvin & Vivien'

 

To what I pointed, 

 

'Hi,

I forgot to mention this sentence was written by Susan Sontag, a writer, filmmaker, and political activist, I think she had a cancer and during her experience she wrote a book called "Disease as Metaphor" where this quote comes from, she was really good, she wrote very interesting things about the interpretation of art too. About the images when you close the eyes my intention is to create something very abstract, ambiguous, like emotions, I am thinking in textures made with clay and inspired by the images of the virus probably, so whether this is positive, negative, a dream or a nightmare would be up to the viewer's imagination, I won't be giving any determined point of view but a suggestion, in art I try not to impose my meanings over others so this should remain open, anyway, when you "wake up" from the dream you may smile or laugh, which I think could give this sort of happy ending feeling which describes your history more than probably others, we can discuss this more in depth tomorrow, also about the half nakedness, which I think could work very well, but let's see which temperature we find as sometimes college is literally freezing...and many thanks for finding some travel pictures for me!

Thanks a lot for all your help,

Looking forward to seeing you tomorrow again,

Susana'

 

So yes, now we are ready for recording, all is clear and everybody is happy, by the way, Kelvin is trying to find Susan Sontag's book as he relly found this quote so inspiring (so do I).

POST DOUBLE TRANSPLANT RECOVERY

Fortunately for me they found one and good job too, because if they’d failed to locate one I believe a body with failed liver function can only last for about 72 hours on life support before irreparable damage occurs. So on Dec 11^th 2012 I received my 2^nd liver transplant. When I came to after this latest episode, I do have to admit I was feeling slightly under the weather. Life support makes your brain swell, therefore your head swells to accommodate it, and the pressure causes the blood vessels in your eyes to burst. 

I entered hospital feeling fairly fab, groovy, windswept and interesting (well I sort of believed it and that’s all that mattered), but I came out of surgery looking old, bloated, tired, ill and worse for wear, resembling some sort of ‘thing’ from the bottom of the swamp one describes to scare one’s grandchildren during bedtime stories. Back in intensive care my blood was now coursing with an ever expanding range of exotic chemicals to compensate for the surgery. Anti-biotics to prevent infection, immune-suppressants to prevent liver rejection, anti-acids to prevent acid release into the stomach, steroids to do what I can no longer remember, soluble aspirin to reduce the risk of blood clots through the hepatic artery, a CMV infection inhibitor and lots of other stuff too. I even gained 10kg in weight caused by a non-functioning liver during the surgery/life support process.

My whole body was swollen, my genitals looked like a spitting image caricature of the real thing, my stomach was swollen, tender and full of staples, my mouth and nose were crusty, and my bloodshot eyes were capable of turning the nurses to stone Medusa like were they to accidentally gaze upon me without making the sign of the cross first. However, the hospital staff were necessarily brutal in their regime of ‘encouraging’ patients not to feel sorry themselves, suck it all up, not to be wimps, and get the hell out of bed (not so easy when attached to a bewildering display of tubes, bags and surgical accoutrements). 

Hey ho, after 13 days I was ready for discharge, just in time for Christmas, December 21^st 2012. On that day I was finally disconnected from the last encumbrances to my freedom, the catheter, cannula and assorted drainage bags. But the intervening 13 days had seen some spectacular dashes to the porcelain chariot situated in the adjacent en-suite with markedly varying degrees of success and disaster. For those often and urgent impulses to engage oneself in the chemically induced throes of peristalsis would invariably arrive with barely enough notice to disengage oneself from one’s oxygen mask, untangle one’s wires from the cannula to the drip, electrically haul oneself upright enough in the bed without ripping ones staples out to then swing one’s bloated legs over the edge to begin the mad dash, which might all prove ultimately unnecessary anyway, for ignominious failure was often already upon one, resulting in that plaintive and hesitant call for help…………. Nurse!!!!!!!!!!!!!!!!!!!

CERAMIC OBJECTS (4)

LIVER TRANSPLANT

That weirdness only lasted for 20 hours. At noon on December 8^th the co-ordinator rang again to announce they’d found a suitable liver and could I be at the hospital within 2 hours. The car journey from Swindon to Birmingham passed in a blur. As basically did the next 12 months.

Upon arrival at the hospital forms were filled, documents signed, tests done and then up to the ward in preparation for surgery which was due for that same evening. There was virtually no time to think, let alone panic, and I entered the whole process feeling somewhat calm and relaxed in a philosophical sort of way. I mean, the situation was what it was, without this transplant my chances of a full recovery were far worse than they were with it. I trusted the doctors and the hospital implicitly, so I just submitted myself to their care and quite happily drifted off into la la land under anaesthetic leaving all my other cares behind. 

I do remember waking up after surgery. First thing I saw was Vivien’s face and it wasn’t surrounded with a halo and she wasn’t wearing white, thus indicating I was still alive and on planet earth. So that’s good then! Second thing I felt was slightly more than the weeniest tadge of discomfort when I tried to move. Apparently some of the medical team had taken advantage of my anaesthetized state and fastened me to the bed by tubes attaching themselves to lots of different bags they’d thoughtfully decorated my bed with. Third thing I thought was ‘how the hell do I go to the loo? Vivien obviously read my turmoil and pointed to the tubes leading to the catheter and poo-bag hanging decoration like off the end of the bed. Total bliss, I had my best friend looking after me, I could pee and poo in bed without getting up and I was being fed through tubes. Surely it doesn’t get any better than that.

Feeling quite content with my new life (apart from the weeniest tadge of discomfort when I tried to move) I drifted off into la la land again as the latest instalment of pain killer found its way into my blood stream from one of the many drips dispelling multifarious medications through the plethora of tubes attaching themselves to various parts of my body through a system of ‘spaghetti junction’ like complexity. And that was that for a few days, as unbeknown to me in la la land, this transplant failed after 36 hours (a record I believe), leaving the surgeons with no option other than to put me on life support while they desperately searched for a new liver.

CERAMICS OBJECTS (3)

LIVER TRANSPLANT ASSESSMENT

And so I entered Birmingham hospitals Liver Transplant Assessment programme where prospective patients are assessed for their suitability for transplant. This involved attending the hospital on 19^th November 2012 to undergo a variety of tests including chest x-ray, echocardiogram, ECG and blood tests. Then we met with a transplant co-ordinator who gave us information about the rest of the assessment and answered any questions we had. At the end of the day the co-ordinator confirmed the consultants would review today’s results and decide if they considered me a suitable candidate, in which case further assessments would be required. 

Well we passed phase one and were recalled for 2 more days of tests and assessments on Dec 4 & 5^th.

It was made clear to us during these assessments that even if accepted, this was no ‘guarantee’ of actually receiving a transplant. There is always a shortage of donor livers; hence we might be waiting for possibly up to 3,6,12 months or maybe longer for a transplant. It was not unknown for some patients to die while on the list.

Dec 5^th was a Wednesday, and at the end of the day’s proceedings we were told the consultants met every Friday to review all the assessed patients and decide whether or not they were to go on the waiting list. Either way we would be called on Friday afternoon. So Vivien and I went home that Wednesday evening on tenterhooks awaiting Friday’s judgement, which came at about 4 o’clock. The co-ordinator said we had made it onto the list and she sounded genuinely thrilled for us. She also re-iterated it would be our responsibility from today to always have an overnight bag packed ready and waiting for the phone call to get to the hospital urgently were they to find a compatible liver, bearing in mind the hospital was over 2 hours away. She did warn us there might be some false alarms, because it was entirely possible a liver from another part of the country initially deemed suitable for me, might turn out not to be so under scrutiny on arrival at the hospital. 

But some hope is better than no hope, the tumour was small (but growing), and there was always surgery or radio/chemotherapy in the interim if a compatible liver proved difficult to find, although I do have a common blood type which increased my chances significantly. After that call our emotions were running high, it felt like we had come to the end of a very difficult 22 months, only now to be standing on the threshold of a different uncertainty and still staring into a future that held no guarantees. Weird feeling!

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.

THE STIGMA ATTACHED TO HEPATITIS C (2)

In October 2012 I accidentally ‘stumbled’ upon a weekly support group for sufferers of Hepatitis C in Swindon. Here I met others covering a wide spectrum of experience, some with the disease awaiting treatment, others who had been through treatment and either cleared or not cleared the virus. There were carers of sufferers (like Vivien) and last but not least, occasional visitors from various branches of the medical profession with an interest in Hepatitis C who wanted to learn more about the disease from patients actually suffering from it, so hats off to them. 

We are a voluntary group with our own website http://www.hepcpositive.org.uk/ please do visit the website and take a look at what we’re doing. The group is run by a rock musician who came through years of addiction himself and lost most things of value in his life along the way. He’s been ‘clean’ for 7 years now and it’s his experience that drives this group forward. Many agencies working in related fields are now coming to us to learn more about what we’re doing and how we do it. There is a good mix of people here, others like me who experimented with drugs in the late 60’s/70’s, finished and moved on, only to later find the disease had lain dormant in their bodies for 30 – 40 years before jumping out later to bite us in the ass. 

There are many ex drug addicts too, most of whom are currently going through rehab and doing all it takes to get clean and reclaim their lives (not easy). Virtually all the drug addicts I have come into contact with suffered some sort of abandonment or abuse as kids, whether mental or physical, and drugs became their escape from the nightmare. 

Wrong choice? 

Whose fault?

It is for these kids I go to the weekly meetings and participate in this blog, hoping to ‘debunk’ some of the misconceptions surrounding the disease and those who have it, and to help in any way I can anyone people suffering from it and looking for advice/information/support. We all make personal choices for various reasons based on our own unique experiences at the time we experience them. For young kids who turned to drugs to help them deal with their issues, and have now made a commitment to change their lives, I believe they deserve every chance for a route back into society and all the help they can get.

THE STIGMA ATTACHED TO HEPATITIS C (1)

Not knowing anything about Hep C before being told I had it meant I just accepted having it as bad luck. In some ways it was a bit of a relief, because it finally explained some of the symptoms I’d been experiencing over the past few years. Debilitating cramps, headaches, oedema (swelling of fingers, ankles), and tiredness etc. We spent 8 days in Bali hospital before Prof Wibawa considered me stable enough to discharge with a sack full of pills to treat my various ailments. This was followed by three weeks of recuperation before our return flight home.

We arranged to stay with our daughter in Stroud which was also close to the majority of my family in the Cotswolds. I needed a doctor in England as there was no way we could go back to Spain with Hep C, my Spanish was certainly not good enough to cope with the complex medical dialogue needed for me to understand all the issues raised during my time in hospital. So while we were resting in Bali, my sister signed me up to an excellent surgery in Stroud ready for our return. The process of recovery was now under way and I was back in the NHS. My new GP in Stroud immediately referred me to Gloucester Hospital where I went through many rounds of clinics, consultations, blood tests and results.

It was during this process that I became painfully aware of general attitudes to this disease and those who suffer with it. Hepatitis C is a BBV (Blood Borne Virus); it is passed on through the exchange of blood. So drug addicts become prime candidates when they share needles for example. Tattoos are another source if the tattooist doesn’t use a clean needle. Cocaine users can also pass it on where a £5 note is shared to ‘snort’ it; blood from the nasal mucus membrane of one can transfer to the note which is then used by another, blood transfusions before the early 90’s before Hep C was discovered.

Contrary to common belief though, it is more difficult to transmit through sexual activity, unless the sex is rough or violent to the point where blood passes from one to another. There are also many innocent ways to pass this disease on, couples sharing a toothbrush where gums have bled, and partners sharing safety razors where one tiny nick of blood is sufficient to transmit the virus. But in general, I have found it to be considered a disease suffered by drug addicts, ne’er do wells and people with low morals. Much in the same way HIV and Aids was considered the disease of homosexuals 20 – 30 years ago, and how far have we come since then!In fact the further down the road of treatment and recovery I went, the more biased and entrenched I found these attitudes to be.

A VISIT TO MY FRIEND'S

When I meet Mary she used to make comments about her disease, she was feeling tired, she wouldn't be able to go out, she would rather stay home and relax. When she said she had Hepatitis C, I had an idea it was some sort of very contagious disease which would damage your liver. I thought it couldn't be cured at all and also that it was a similar disease to AIDS or linked somehow. It seems I was true about the blood transmission character of the disease which makes the disease similar to HIV and AIDS but it actually happens that in most cases it can be cured now which is quite comforting, of course the sooner you know you've been infected, the better. After the virus gets into your blood it can take decades before you feel the symptoms but still if there are viruses inside your blood that means you can pass the disease into somebody else.

After four years living in the UK, this summer I decided to register with a GP, the nurse was an incredible and lovely woman and she offer to me to have some blood test done, that would include among others AIDS and Hepatitis C. At that time I thought I didn't need them, still she explained to me how I could get them done easily and free. I have start thinking it may be the time to have them done, I feel fine at the moment but still, I could be infecting others without even being aware of it.

So yes, after my first meeting with Kelvin I decided to go an make a visit to my friend Mary. Mary has just ended a successful treatment, very proud and happy, she shows me the letter she received from hospital saying she has just got rid of all these pernicious viruses. She jokes and smiles and looks very happy and healthy and beautiful! She also shows me a bag full of waste from the medicines she has been taking during her treatment. I would have loved to post a picture of them which I took, but due to the unbranded character of this project I've been advise not to do it. Anyway, just so that you can get an idea, I would say these medicines were more than all the medicines I've taken through my entire life.

Her husband comes back from work, there's also another friend from Spain, the fact of having been cured is the best reason to have some wine and keep on talking about Hepatitis C and life, and have some fun. She tells me when she meet her husband they went on a date, for lunch, to a pub, she really liked him and she thought she had to tell him about the disease before going any further. After gathering some energy she said, "Do you know what? I've got Hepatitis C". He looked at her and answer, "Do you know what? I've got a peacemaker since I was on my teens". They kissed each other and they've been together since then. They're too lovely and the way they've both dealt with their severe diseases is an inspiration to me. I was so drunk when I got home...

ANNIE CATTRELL

I keep looking at other artsists whose work is related to disease or medicine, Annie Cattrell, my own tutor, here at RCA, works in the limits between art and science. Fascinated with metamorphosis and the hidden structures, systems and landscapes of the human body, for her projects she collaborates, among others, with specialists in neuroscience, psychiatry or the history of science.

These are some of her works:

Capacity

From Within

Sense

DEALING WITH DIAGNOSIS

I looked at Vivien, and she looked at me, both pretty much in a state of shock after the prof had explained the meaning of all the other medical complications attaching themselves to Hepatitis C. Personally I couldn’t have been more confused if he’d tried tying me upside down to a rubber lamppost, covered me in chocolate and started calling me Doris! I mean, what language was that diagnosis delivered in, it certainly wasn’t English as I understood it. I know I’d asked for the bitter pill not to be sugar coated, but I had at least expected the results of his deliberations in English and not Latin, Basque or Indonesian!

It had all sounded very dramatic and rather serious, but the overall tone of his delivery was sympathetic and suggested re-assurance and calm, not alarm. This at least gave hope for the prospect of some future on our horizon. “So that’s alright then is it prof?” I asked, and indeed he suggested it might be. With that out of the way I now felt able to deal with the medical issues. I knew nothing about Hepatitis C; we’d always been completely up to date on all vaccinations necessary for travel including Hepatitis A & B. Neither of us really understood too much about any of the diseases we were vaccinated against, other than knowing we couldn’t travel without them. Therefore, as long as we were up to date, we knew we weren’t going to catch any of them. But there is no current vaccine for Hepatitis C, and when Prof Wibawa announced I had it, he might as well have told me I had raging swamp rot or dingleberry disease.

Prof said he could stabilise my condition, and that at least seemed to indicate there was some time on our side. Time enough anyway to learn what had caused this, and how to avoid it in the future. Recreational drugs haven’t been a part of our life for over 30 years since our children arrived in the late 70’s, we might have drunk a bit too much in Spain as part of the Mediterranean lifestyle, but neither of us have ever been overweight, we’ve both kept ourselves fit through sport and exercise, and so there was no reason to believe I couldn’t return to normal again. So the new mantra became; Concentrate on dealing with one day at a time. Do what the doctors tell you. Beat Hepatitis C and all the related medical side issues linked to it. Then focus on something positive. That bit was easy for me. Get fit and well enough again to enjoy my family and friends, and at some as yet, unspecified time in our future, resume travelling.

THE SURYA HUSADHA HOSPITAL, DENPASSAR, BALI

I was admitted on the morning of February 24th 2010, (not a well boy)! After the admittance procedure we were ushered straight up onto a ward for connection to a Saline drip and oxygen mask. In the meantime blood samples were taken for analysis and over the next few days five blood transfusions were needed to try and restore my low blood levels to something approaching normal. Scared…yes. Not happy…. Yes.

But look on the bright side, if you’re ill, scared and unhappy, where better to be than inside a modern hospital being treated by the very Head of Gastro-enterology himself, yes the big cheese in our case is Professor I Dewa Nyoman Wibawa MD, PHD, a very important man. We spent as comfortable a night as our situation allowed and waited patiently for the prof to come on his rounds with my test results the next morning. He arrived looking serious (oh dear). Expecting the worst I told him not to sugar coat the pill and to give it to us straight.

Scared… yes. Not happy…. Oh Yes, but what can you do. Despite all these negative emotions, I somehow also felt strangely calm, as if resigned to whatever his judgement on my fate might turn out to be. He started hesitantly, as if looking for a way to minimise the weight of whatever news he had to impart in a language that wasn’t his native tongue. By now both Vivien and I were a captive audience, holding hands, and mentally saying goodbye to each other. “Well Mr and Mrs Marshall, I’m afraid to tell you that Mr Marshall has Hepatitis C”. This statement was issued in a way that had more than a hint of its being only a part of some impending good news/bad news story. And I can’t work out which bit of the news this is, because I know nothing about Hepatitis C. Has he started with the good news? Or the bad? And what is still to come? My brain was in turmoil, but before I could gather my thoughts he continued. “As well as Hepatitis C Mr Marshall, you also have decompensated liver cirrhosis, chronic liver disease, Hematemesis-Melena, a Hiatal hernia, Reflux oesophagitis, a polypoid lesion on the fundic gaster, Portal hypertensive gastropathy and Erosive gastritis”!!!! Now I’m proper confused, and Vivien is crying uncontrollably beside me. I mean, what the f*** is going on here!!!

DIAGNOSIS

My wife Vivien and I were quite happily minding our own business and backpacking through SE Asia during the winter of 2009/10. We had taken to doing this for several winters now from November to March. The reason was to escape the harsh night time mountain cold at our Spanish farmhouse in Andalucia where we lived. The previous few winters we had decamped to India, Sri Lanka and Thailand, but this year we were taking in Thailand (again) Laos, Cambodia, Malaysia, Singapore and Indonesia. Three and a half months into this trip while travelling down through Malaysia I found myself for no obviously apparent reason becoming weaker and weaker, to the point where I became too weak and ill to leave our guesthouse in Singapore, other than to travel the shortest distance to eat when I felt I could manage food, and that wasn’t often. The following plane ride over to Djakarta in Indonesia became the flight from hell as cramps, stomach spasms, headaches and nausea took serious hold.

Djakarta was originally supposed to be the jumping off point for our final month of touring down through Java and Sumatra before terminating in Bali for the last week of this trip before our scheduled return flight home to Spain at the end of March. Oh the best laid plans of mice and idiots! On arrival at Djakarta airport I felt too ill to face the prospect of more backpacking, so we decided to postpone our planned Indonesian adventure for now and fly straight on down to Bali to rest and recuperate for a month. We finally arrived at Denpasar airport in Bali mid-afternoon on 23rd February 2010, but it took until early evening to find a suitable guesthouse within our budget. By now I was truly knackered, but we managed to get into our room by about 7 pm.

I needed to go straight to the toilet on arrival, only to discover a lot of blood in the bowl when I’d finished. Literally not having enough strength to clean myself afterward, I just crawled into the shower, curled up naked in the foetal position and asked Vivien to ‘hose me down’. Nice, quick, easy. But before bed I needed to detour back to the toilet bowl to be sick, and when that ran red with blood I knew something more than just being run down was afoot. This was fast becoming an evening not to forget in a hurry.

Hey ho. So the general upshot to all this blood, vomit, diarrhoea, tiredness, cramp and generally not feeling totally tip top ticketyboo was that by this point, any remaining thoughts of ‘toughing it out, being a man, sucking it up, and only ever going to the doctor were a limb virtually hanging off or already detached’ went out the window. Something was definitely appearing to be not quite right here and needed sorting, so off to the jolly old hospital in the morning it is then, health insurance or not (in our case not)!

FIRST AGREEMENTS

During my first meeting with Kelvin and Viv I realised I didn't really know much about Hepatitis C, a few ideas I retain is that it can be only transmited through blood to blood contact, it seems the virus is very strong and can survive days outside the human body, which helps the disease to be very contagious. It seems it is the fith disease that causes more deaths in the UK and the number of people infected is increasing due to the lack of awareness.

I show them some of my previous art works and they look quite surprised, my art is odd, it is fine, I already know. Kelvin says he knows nothing about art but he thinks I try to think outside the box, which I am quite happy to hear, I also think Viv has a sort of natural understanding of what art is. As part of our project "Perspectives: Art, Liver Diseases and Me" I need to keep a diary of our meetings. As Kelvin likes writing and he does well, I suggest him to open a blog so that we can build this diary together and share it with whoever may be interested in the project or just wants to know a bit more about Hepatitis C, and this is how "My Hepatitis C Journey" comes to life.

We talk about how the project will be developed, I ask them until what extent they would like to be involved, they say until the end. I include Vivien of course as I think she is an essential part of Kelvin's journey through Hepatitis C and through life. I tell them about the concept I want to use as starting point for the project which is the idea of fragility, Kelvin explains to me how fragility doesn't represent his vision of the disease at all. He has never felt fragile, he has been very lucky to have so much support from Vivien and the rest of his family and friends, in fact he gives support to other patients too. Although my idea of fragility had more to do with the instant in which something seems to be perfect and suddenly breaks and cannot be repaired, or it can but will always leave a scar, as when you work with clay, you can spend weeks working on a piece, drying it very slowly, firing it with care, but when you open the kiln, the crack is just there, looking at you, confronting yourself with your own imperfect immateriality, or when the piece falls down to the floor and cracks in a fraction of a second.

We keep on talking and we agree that Kelvin's vision of the disease is more about the process, like a journey that will lead him from darkness to light, the way gets lighter at some points but then leads Kelvin into darkness again, however, in the end, there should be a permanent light. Vivien agrees to see all their adventure through Hepatitis C as a path, which she compares to travelling on a train.

The three of us at the studio at Royal College of Art (RCA)

FIRST MEETING

On 16th October I try to get early to college so as to be ready for our meeting. I am waiting for Kelvin and Vivien by the student entrance, and here they are, exactly as described by Kelvin, a fab, groovy, windswept and interesting old farts holding hands and looking lost, I go and say hello, I feel as if I had meet them before. As planned we go up to the cafe and we have a nice an informal chat which is suddenly interrupted by a fire alarm. As the educated people we are, we evacuate the building and through the closest exit we get to the fire meeting point outside the building, it has to be said it's a beautiful one, just by one of the entrances of the Royal Albert Hall. Kelvin and Viv joke about their day out, the fire alarm seems to have been just a fake and we go back inside the building.

The last few weeks I've been having some problems at work, a new manager and his friends have been bullying me, at the beginning I couldn't understand what was going on, in the end it was just they wanted to get rid of me so that his friend could get my place. Kelvin tells me about his two failed Hepatitis C treatments and his two liver transplants, during a whole week he thought he would die. My problems at work seem to dissipate. He feels so positive about everything and so secure about the third treatment, the one he is undergoing now, he is 100% sure he will get recovered this time and I trust him. He talks about his long trips to India, where together with Viv, he has spent so many winters and reminds me of a trip I did to Nepal a few years ago, where I decided to go back to university and study art.

I went to Nepal with my boyfriend with the intention to accompany someone who was about to adopt a child. The child was meant to be an orphan, but just a few weeks before the adoption should have taken place, the child parents appeared and pick her up from the shelter she was living at. We had bought the tickets already so we decided to travel anyway, no route or any plan. We ended up taking a bus through Siddharthara road in what was still quite a rainy monsoon. The road was full of landslides, a few times we had to get off the bus, literally climb up the massive rocks that were blocking the road or cross a river where a bridge had just collapsed. The journey was full of curves and at a point the floor got so slippery you could feel the bus driver wasn't fully in control of the car, the bus was of course overloaded, in a sharp bend, one of the wheels lost contact with the roadbed, to the left there was a small Hindu temple dug into the rock. Everybody moved their hands as praying, I looked at the precipice through the window and I really though I was about to die, my remains not to be found in the depths of a remote Nepalese river. It was exactly in that fragile fragment of my life when I thought the game was literally over, when I found in my mind exactly the same thought that Kelvin was talking about, I didn't want to go to the grave with any regrets, and as I survived, I left my past behind to start a new life through art.

KELVIN & VIVIEN

Our meeting has been confirmed and I have just received a fantastic email with lots of information about Kelvin, it seems he is coming to visit with his wife Vivien, I've had a good deal, in the end I get to people for the price of one. I am feeling excited but at the same time a bit nervous, we don't know each other and we'll be talking about very personal stuff, I really hope all goes right and we all get on well with each other!

This is a copy of Kelvin's lovely email:

"Good afternoon Susana,

Vivien and I are really looking forward to meeting you, this will truly be a first for us. Apart from theatre going and gigs etc we are not at all involved in the arts and meeting you will be like looking through a window into a different world.

Prior to our meeting at 11.30 am on Thursday I thought it might be useful to give you a bit of personal background on myself and Vivien on our journey through Hepatitis C from diagnosis in Feb 2010 to today.

Name: Kelvin Marshall.

Age: Body 62, Head 22.

Work History: Senior Manager at B&Q and Sainsbury Homebase Head Offices until retirement in 2000 (age 48).

Post 2000: 10 years in Andalucía renovating an old farmhouse uninhabited for 30 years until diagnosed with Hepatitis C while travelling throughout SE Asia in Feb 2010.

Gloucester Hospital 2010 -2012: Back in the UK under the care of Gloucester Hospital where I went through 2 separate treatments to get rid of the virus. First in July 2010 which made me very ill and which the virus didn't respond to, so I was taken off the drugs about 10/11 weeks into a 48 week programme. The second and more aggressive treatment was another 48 week programme started in July 2011 which resulted in my being rushed into hospital after 20 days to be stabilised as my body (particularly my liver) was not able to withstand the rigours of that particular treatment.

Birmingham Hospital 2012: As a result of my deteriorating liver condition which was now showing the early onset of cancer, I was referred to the Specialist liver unit at Queen Elizabeth University Hospital in Birmingham where I was put through their liver transplant assessment programme. I finished the assessment on December 5th 2012, my case was reviewed by the surgeons on Dec 7th and I was called that afternoon to be informed I was now on the waiting list for a new liver (no guarantees).

Liver Transplants Dec 8 & Dec 11 2012: I was called the very next day Dec 8th and told to get to the hospital urgently as they had found a compatible liver, so with no time to worry or stew over it Vivien and I got to the hospital by early afternoon and I was in surgery by 6pm. Unbeknown to me this first liver failed after 36 hours and I was put on life support while the surgeons desperately tried to locate another compatible liver, for which the time window was only 72 hours before it became too late. Fortunately for us they did find one and I was operated on again on Dec 11th.

Significant moment of meaning: This date has become my 'significant moment of meaning'. I have never personally felt any stigma attached to having this pernicious virus, I believe I contracted it while travelling throughout Persia, Afghanistan, Pakistan and India throughout mid 70's, either as a result of my risky lifestyle (drug experimentation)or donating blood to some hospitals in those countries. It appears the virus then lay dormant in my body for 30 + years before jumping up to bite me big time on the ass in Bali in Feb 2010. NB when I met Vivien in 1976 and we started having children, I put down childish things (drugs) and have been drug free now for over 30 years, not that I was ever an addict.

I am a very positive guy and have always been super confident that having this disease is just a blip in my unfolding life story and have always felt super confident that I will beat this disease return to 'normal'. But I didn't think it would take 5 years or take me quite so close to 'not making it'.

That is why I regard Dec 11th 2012 as my significant moment of meaning. Because when I finally came round and was able to find some focus through the post op drug haze, I was confronted by my own mortality and became even more determined not to go to my eventual grave with any regrets. I also vowed that if there was ever anything I could do to help or support anyone else with this disease,then I would do it, hence meeting you on Thursday thanks to Natalie.

We hope this helps you work out any questions you may have before we meet, and if there is time, of course we would love to look at some of your work. However, this would be purely for our own personal interest, because neither of us feel we'll be able to help you artistically with whatever piece of work pops into your head to 'articulate' this unique experience. So please consider us putty in your capable hands.

PS To help you recognise us on the day, we'll be the fab, groovy, windswept and interesting old farts holding hands and looking lost!

PPS I am now on my 3rd treatment, I'll take my last pills on Sunday Nov 2nd, then I will have to return to Birmingham after 2,4,8,12 & 24 weeks for blood tests to make sure the virus hasn't returned. Then, as a transplant patient I will return regularly (bi-annually/annually) for life to monitor my liver condition and the efficacy of the anti-rejection drug I'm now on for the rest of my life.

Regards

Kelvin and Vivien"

KELVIN MARSHALL

I have finally find out who is the person I will be collaborating with, his name is Kelvin Marshall and Natalie Bennett is the person who has found him on my behalf, she has arranged our meeting next Thursday 16th October at 11:30 am, I really want to thank her for all the effort she has done so that this meeting could happen. Natalie has sent me a link to a patient association called Hep C Positive, so that I can know a bit more about Kelvin prior to our first meeting.

I have sent Natalie all the information about our meeting point, which will be my college in London, the Royal College of Art is quite accessible as it is placed just by the Royal Albert Hall, in South Kensington, my intention is to have an informal chat at the cafe before showing Kelvin around the studios where I spend most of my time, I also want to show him some of my work so that he can get an idea of what to expect from our collaboration. I have described myself as 1,60m. tall, very skinny, pale skin, dark and curly hair.   

HEPATITIS C, THE VIRUS

As it seems it will take a while before I have the opportunity to meet the patient I will be working with, I decide to start making some research about Hepatitis C on my own. I begin by typing on Google, Hepatitis C Virus and I find some beautiful images, they resemble a sort of science fiction landscapes, topographies or maps belonging to some far off mysterious lands.