I went away on a boys holiday when I was in my early twenties. About four of us went over to Sri Lanka. We’ve taken some old Triumph bikes heading off to a beach. I’ve come to a roundabout and I could see a geezer hurtling towards me on my right hand side.
He’s hit me and I’ve gone into a 360 degree spin. The bike’s gone one way, I’ve gone the other hurtling towards an old telegraph pole which I’ve hit head first. My helmet split open and I just remember being in excruciating pain. From there I blanked out.
I was in a coma for two months in the hospital. I asked mum for tea and toast, eggs sunny side up, I heard a voice saying ‘I’m not your mum’. It was a doctor and I woke up with a big bandage on my right arm. They told me my parents would come over soon and make arrangements for me to go back home.
The medics told me I’d had a blood transfusion and I didn’t think anything of it. I lost about 2-3 pints of blood. I had 160 stitches inside me and 160 stitches outside. They tried telling me my right hand wasn’t working properly because of the tendon damage.
Fast forward 30 years – I’m 55 now – and I’m doing my exercises at my dad’s house. He had just passed away and had left me the house. I’m doing the bar bell at the top of the landing next to the stairs and just fallen over and tumbled down to the bottom. I coughed up a bit of blood but didn’t think anything of it again.
But then about a week or two later I started feeling lethargic and thinking something’s not right. I took myself over to Whittington Hospital A&E (in north London) to get checked out. Two weeks later I get a call from the Royal Free Hospital (in Hampstead) to come in. I took my wife with me – I think there were four doctors in the room – and she’s kicked off after they told me I’d got hepatitis C and cirrhosis of the liver – I don’t even drink! I’m trying to tell her to calm down so I can hear what the doctors are telling me, but she’s hit the roof thinking that I’ve given her Aids/HIV.
I just thought ‘what are they on about it?’ In my head I started thinking about putting a bucket list together, my time’s up. I’m a gonner. They talked me through things and went through a treatment plan, but nothing’s registering. I’ve just zoned out.
It was only when Chris, a peer mentor for The Hepatitis C Trust, came over to see me and we went out for a coffee that I started to ease into it. He started telling me about his journey and the medication he was on.
And things started to improve as soon as I went on the treatment programme. I’m now cured of hepatitis C after taking a course of tablets for two months. Having lived with the virus for so long though has meant that I’m getting lesions which are a result of the cirrhosis of the liver. I’m on a hospital trial taking some new drugs, which takes three years.
They’ve just found a second lesion earlier this month, but it’s not cancerous. That’s what people are worried about – that the lesion becomes cancerous. Cirrhosis can’t be cured but its progression can be managed with treatment. So far, everything’s going well. Even now the doctors ring me and ask how I’m feeling. I’ve never had that before. That to me is amazing. The Royal Free is absolutely brilliant. I’ve become a peer mentor for The Hepatitis C Trust and can’t thank them enough for everything they’ve done for me.
I’ve put on weight taking the tablets for my cirrhosis and finding it hard to lose the weight. I’m in the gym and do boxing. I’m into Brazilian jujitsu as well but personally my journey has been very hard. My younger brother has stuck by me. He’s always been a support.
But my family made me feel out of place because of my diagnosis and all their misunderstandings around it.
I’m half-Muslim and didn’t know whether to open up about my diagnosis to the community, so I kept it quiet. But everyone should know about it. It doesn’t matter what background you’re from.
I was negative because you jump to the wrong conclusions about hepatitis C. I can’t tell you how much good opening up has been for me. At the same time I’m helping others going through their diagnoses.
I’ve always kept myself fit and healthy so hearing I had cirrhosis of the liver had a big impact on my life. The Muslim/South Asian community think it’s taboo – that it has something to do with Aids or something. But we need to get it out there that hepatitis C is treatable and curable.
The diagnosis contributed to the breakdown of my 11-year marriage. I had to tell my ex-wife’s family that hepatitis C is not a sexually transmitted disease. I offered to give them booklets on hepatitis C explaining everything.
I’ve had to educate my family and community on how hepatitis C can be acquired. Many people think it’s just a concern for drug users who share needles or people that are promiscuous. But there are lots of other ways blood-to-blood contact can happen.
Hepatitis C is a blood borne virus that can remain symptomless for years and for some people, decades. I never had any symptoms in 30 years. You’d have never known hepatitis C was in me unless I had an injury or needed to go to A&E. It’s a silent disease, but one that can be treated.
I wish I’d had more awareness of the virus and had access to the simple at-home finger prick test that you can now get from the NHS. If I had found out years earlier, maybe my life would have looked a bit different.
I do four days a week for The Hepatitis C Trust and waiting to get a permanent position with them hopefully. We work with people to ensure they are engaging with their doctors, taking their medication. I was a rail engineer for Network Rail but had to call it a day because of my liver.
The support I’ve had when I talk about my story gives me a lot of strength. I’m like the charity’s little soldier. I was asked to do a talk in Kings Cross in front of doctors, nurses and the pharmaceutical companies, about 3,000 people. I went up first and got standing ovation. There were people in tears, crying and coming up to me and hugging me.
I’ve a talk in Camden Town for the Probation Service as they want me to go into prisons and talk to the boys in there, telling them about the risks of hepatitis C in prison. Tell them not to worry or be scared but just to get the support they need.
It’s estimated that thousands of people in England may have unknowingly acquired hepatitis C abroad, through tattoos or piercings, or increasingly popular dental, cosmetic or health procedure. To get tested you can order a free, confidential and simple home kit today by visiting hepctest.nhs.uk.
For more information about The Hepatitis C Trust visit: www.https://www.hepctrust.org.uk/