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'They had to find a way to rebuild my womanhood'

Four years after learning she had cancer of the vulva, Claire Taylor tells Lynne Wallis about how she faced up to radical surgery, social stigma – and life-threatening illness

Four years ago, Claire Taylor, then 20, was like any other young woman on the edge of her life. Good looking, outgoing, bright and full of youthful exuberance with lots of friends and a promising career unfolding as a chef on the Isle of Man, there was just one small thing that bothered her. In an age where women are expected to strive for absolute perfection in the looks department, Claire had an imperfection she badly wanted corrected – an extra flap of skin on her labia that made her feel "like a freak".

And then four years ago, while washing, Claire found a centimetre-long lump on the right side of her vulva. Her GP diagnosed a sebaceous cyst and recommended a small surgical procedure to remove it, and when a surgeon took some of it away for a biopsy in July 2009, just to make sure there was nothing else going on, they took the opportunity to remove her excess skin. Claire was thrilled. "It was bliss, feeling normal for the first time ever," she recalls.

She didn't know it then, but her blissful state was to last a mere month. "I didn't think any more about the surgery I'd had, and then I had a phone call from the hospital saying they had the results of my tests that I had to come in to see the doctor. They asked me to take someone with me. I had no idea why this was and I became anxious. We sat down and the doctor came right out and said, 'Miss Taylor, you have cancer.' The shock was indescribable. My friend had to almost carry me home, and I wept hard. My parents were devastated. Dad just couldn't believe it. Mum was a bit calmer. To be told that at age 20 that you have a life-threatening illness was just totally unreal."

Claire's cancer, a squamous-cell carcinoma, was a very rare type, which, in three out of four cases, affects women aged over 65. The tumours are normally found within surface tissue. Claire's was, more rarely, deep inside the vulva. She was sent to Liverpool hospital for her first operation in November 2009, where surgeons made an incision down the right labia to cut the cancerous tissue out. But subsequent tests showed cancerous tissue was still present. Doctors recommended "radical excision" of Claire's labia, which meant its total removal on one side. She recalls: "I had to give up my job anyway because I couldn't concentrate – I almost fell into one of the deep fat fryers one day, and then I nearly cut my hand off chopping vegetables."

After the removal of the entire right side of Claire's labia, doctors discussed reconstructive surgery, which meant taking a lump of tissue from her groin and using it to make a new labia. The painful operation was unsuccessful, and later that year Claire began self-harming and even attempted an overdose.

She said "The stitches gave way and the whole thing collapsed. I just wanted to feel normal, but it was worse than ever. I was devastated, but I bottled up my feelings. I didn't want to appear weak and I feared no one would understand, but it all welled up inside me. I'd been butchered, and I couldn't pee properly because the architecture of my vagina and urethra had been altered drastically, and it didn't aim straight so it went down my leg.

"I was put on anti-depressants but I didn't get on with them very well. It was a very low point in my life. We had nurses in to help with my care and hygiene, I had to douche every time I had a pee, I was on 20 different tablets and I'd developed insomnia from sleeping in a very unnatural position, with my legs held open with a pillow between them. I borrowed my grandad's wheelchair but I didn't go out much because I didn't know what to say to people if they asked what was wrong. My independence was shot to pieces."

Claire's genitalia were in an extremely poor state. Her vagina had almost closed up where the surgery had impacted on her internally, and she had lost lots of glands including those that lubricate the vagina. She had the very good news that the cancer had gone, but there was nothing more doctors in Liverpool could do for her surgically, so they referred her to the Royal Marsden in London. She said "They had to try to find a way rebuild my womanhood, but it wasn't going to be easy. I was dubious because I'd put my trust in doctors before."

After more scans and tests, and a painful procedure to confirm her lymph nodes were not irregular as they had suspected, Claire was introduced to cosmetic surgeon Paul Harris. "I immediately liked and trusted him. He calmed me and my parents down, and described how he would reconstruct the lip of my vagina. After multiple tests and procedures to prepare, he took skin and flesh from my bum cheek and brought it round while it was still 'alive' and attached to me, to make a new labia. He took away all the scar tissue, and used fat from my stomach to fill the potato-sized hole in my thigh. I was meant to be under for two hours, but it turned into six."

Claire was in bed for five days, walking 'like John Wayne' when she got up. The skin graft had taken successfully but Claire worried about her future. "There were so many things I didn't know the answers to. My vagina was too small so I had to use a dilator to keep it open, to stretch the tissue, which was extremely painful. Doctors say I can conceive but probably won't be able to give birth naturally because of the scar tissue and lack of elasticity. I had a massive excess of skin and looked so ugly down there I couldn't imagine ever having sex again. I knew I had to let everything heal."

Aside from her labia being different colours on either side, one side having hair and the other not, and her clitoris being in a slightly different place to where it should have been, Claire was satisfied with the surgery, except for one problem – when she stood up everything hung down because her organs weren't attached to anything. "I wanted it to look better, and to stay in place when I am upright. I showed Mr Harris, and he was rather apologetic he hadn't realised what had happened. He agreed to do perform further surgery." The surgery was successful.

Claire, who is now hoping to go to university to study law, says, "Life is short. My diagnosis really made me realise that I have to do what I really want to, not just settle. It could all have been over for me, and I'd have had so many regrets about things I didn't achieve." One thing Claire doesn't regret one bit is having got involved with the Ellen MacArthur Cancer Trust, a charity for children and young people with cancer, which take groups on sailing trips and other outings.

She said "It was only when I hung out with other young people with cancer that I felt I wasn't alone. It saved me, hearing their stories, knowing how brave they were, relating my experience to people who understood what it was really like."

Four years to the day after diagnosis Claire threw a party. "I wanted to mark it because I'm still here – when I was told 'you have cancer' I didn't know if I'd be here or not four years on. I've had the date of diagnosis tattooed on my back – I want it there so that in future if I have problems with any children I may have, financial worries or some other kind of issue, I can look in the mirror and remember that nothing will ever top being diagnosed with something that could have killed me. I'm looking to the future now."