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.