Originally published in Issue 1 2006 icon
Vulval Cancer - The Facts
Carol with daughter Lisa
Living Life To The Full After Vulval Cancer
By Melanie Hart
When Carol Jones’s consultant said she had a rare cancer and would need a radical vulvectomy, she was so shocked she asked him exactly what he was going to remove.
He went away and came back with a hand-drawn picture of what she would look like after the operation in April 2001.
Carol’s shock was all the greater because, for years, she had been told that the lump on her outer labia was "just a cyst", and her only treatment had been repeated prescriptions of antibiotics.
This feisty 52-year-old Mancunian freely admits to contemplating suicide in the early months after her operation, as she struggled to get used to her body and feel "womanly" again. But her mum, sisters, husband, Alan, and their two grown-up children helped her through those "terrible" days. Desperate to speak to another woman, who’d experienced the same surgery, Carol decided to start up a support group and VACO (Vulva Awareness Campaign Organisation) was born in August 2001. It has gone from strength to strength with more than 900 women, to date, phoning and emailing her.
"A short time ago I was standing in an auditorium in Oxford, in front of 150 specialist nurses, giving a 45-minute presentation on my experiences of vulval cancer. My knees were shaking and I remember thinking, ’What in heaven’s name am I doing here?’, but the presentation went fine. I speak at conferences up and down the country now and run my own website and VACO (Vulva Awareness Campaign Organisation). As an ex-seamstress and make-up artist, I’d never envisaged doing any of those things before being diagnosed with vulva cancer in 2001.
It went up and down like a yo-yo over the years, but never went away
A few years earlier I had found a little lump on my left outer labia. I showed it to my doctor who told me it was ’just a cyst and would go away’. It went up and down like a yo-yo over the years, but never went away. Whenever I was in pain I asked for it to be removed, but was told I didn’t need to. Even when it grew to the size of an egg - I had to walk John Wayne-style - and I was taken to A & E at Trafford General Hospital in a wheelchair, they just looked at it and sent me home with antibiotics.
I checked my "cyst" one day in January 2001 and noticed that it had company. There were two lumps. My initial thought was, ’What if that one also swells up like an egg? I won’t be able to walk!’ I went back to my GP, and saw a lady doctor for the first time. I believe she played a big part in saving my life as she said the lump looked very painful and ulcerated and should have been removed years ago. She referred me to a gynaecologist at Trafford General Hospital in mid-February, where I was told, again, that it was ’only a cyst’. I reminded him that I had been referred with a view to having it removed, and he reluctantly agreed to put me on the waiting list.
I finally had it removed in March, while I sat in a kind of half chair. I even watched what was going on, on a monitor at the side of me, and asked if I could have a look at the ’cyst’ afterwards. The doctor held it in a pair of tweezers for me to see. It looked like a white piece of wax. The nurse assisting him, said, ’Shall I dispose of this now?’ ’No, it has to be sent to the lab,’ he told her. I dread to think what would have happened to me if he hadn’t stopped her.
He reassured me that he was not anticipating any problems.
I even watched what was going on, on a monitor at the side of me
Then at 8.30am on April 6 the phone rang. It was a doctor’s secretary telling me I had been made an appointment on Monday 9th April at the gynae clinic. I told her it must be a mistake as I wasn’t under that clinic, and then it suddenly hit me it had to be the ’cyst’.
She said it was a routine check-up, but I wasn’t prepared to spend all weekend worrying and told her I was coming in that day.
I called my husband, Alan, saying I was in trouble. He thought I was joking, as I always did, but I just yelled that he had 15 minutes to get home otherwise I would go without him. He was home in 10.
The clinic waiting room was heaving with patients and I got more and more agitated, with poor Alan copping the lot, until I saw the nurse who’d wanted to dispose of the ’cyst’. The receptionist said something to her about me and she looked at me with an expression that confirmed I was in big trouble. A few minutes later they showed us in to see the doctor. I walked into the room, with Alan right behind me, and as I held out my hand to shake the doctor’s hand he just said, ’I’m sorry, you have vulval cancer. The cyst was malignant.’ I was stunned and asked him to repeat himself. He did, while I was still standing there holding out my hand.
My initial reaction was to want to slap his face, as I felt we deserved to have been told with some compassion - and at least to have been asked to sit down. I was shocked and terrified and, by the look on Alan’s face, he was in pretty much the same state and had tears in his eyes. The doctor told me not to worry as I would probably only need to have the nodes removed on my left leg rather than on both. I had no idea what he was talking about. He then said he would write to a gynae-oncologist and I would hear shortly. That was it. I had just been diagnosed with cancer and we came away with no information, phone number, nothing.
My initial reaction was to want to slap his face
I told Alan not to tell our children Lisa, then 24, and Carl, 27, or any of the family, anything until I had seen the specialist, but he told my sister. She tried to find out where I had been referred to, only to discover that the doctor I’d originally been booked to see was away for seven weeks! In the end the first doctor’s secretary found another gynae-oncologist who was able to see me six days later.
I spent most of the following week in my bedroom, crying and planning my funeral, before my sister drove us to Manchester’s Christie Hospital. After what had happened last time I was dreading the consultant coming in, but he entered the room with a huge smile on his face. After examining me he confirmed I had vulval cancer and went on to tell me what surgery I would need, which was completely different to what I’d been told by the other doctor.
A radical vulvectomy? When he explained that he would have to remove my inner and outer labia, my clitoris and the lymph nodes from both groins, I began to think he was crazy. In the end he went off to draw a picture of what I would look like, and I remember saying to him, ’I hope you’re a better surgeon than you are an artist.’ and we all smiled.
When I asked what lifespan I could expect, if I had this surgery, he gave me some positive news. My prognosis looked good and, if the nodes were negative, no further treatment would be needed. I felt more positive than I had been since I had seen the other doctor. I had just been treated with compassion by a consultant who cared, and we were all grateful.
Thankfully all my nodes came back negative! But how could I think it was all over?
He managed to get me a cancellation, and I had my surgery at Hope Hospital, Salford, on April 24 2001. Thankfully all my nodes came back negative! The cancer had gone and I have been clear at every six monthly check-up ever since. But how could I think it was all over? The worst was yet to come...
I was in such pain when I came home from the hospital, but Alan was wonderful. He supported me in every way possible. He’d help me into the bath and make sure I was safe. I couldn’t even get my legs onto the bed as it was so painful, because our bed was higher than the hospital one, so Alan would lift them on for me. He took over the running of the house, but it was more than that. He also helped me emotionally by letting me cry whenever I wanted to.
He did all that, but at one point I tried to push him away. About four or five weeks after the surgery I felt Alan deserved better than being with me, and took 50 out of my purse and said, ’Go and buy yourself a proper woman!’ That was when he cracked up. He said, ’I can take all your abuse, Carol, I can take another dinner service (I’d thrown two dinner services across the room because I was so distraught and sick of the medical profession telling me I was fine, when they didn’t understand what was going on in my head). I can take all that, but not this!’ He shouted, ’I’m going nowhere! I don’t want the money, nor another woman. I love you and always will. I know the kind of person you are, and you will deal with this. Not now, but in time you will deal with this.’
He was right. I did, gradually, once I’d got over the shock of looking at my new body. Some thought it was best I take a look in the presence of a nurse but I wanted to look in the privacy of my own home, and finally plucked up the courage about 10 weeks after the operation.
Nothing could have ever prepared me for what I saw, and I remember sobbing uncontrollably
Nothing could have ever prepared me for what I saw, and I remember sobbing uncontrollably thinking, ’What and who am I now?’ As far as I was concerned I wasn’t female any longer. Yes I had a vagina, but even that didn’t look the same. A couple of weeks later I had another look, and found I wasn’t as devastated as before. Slowly I realised that I was beginning to accept the way I would now look for the rest of my life. I needed to speak to someone who had been through the same thing, but the hospital couldn’t put me in touch with anyone, because of patient confidentiality.
Knowing my frustration, Lisa came round one day and put her laptop on the bed. ’Right mum,’ she said. ’That’s the software you need. Get your brain working and do some posters. No one’s going to come to you, so you’re going to have to go out and find them.’ I designed a poster and a card, and we posted them to 80 or 90 hospitals around the country and waited.
Then eight months later, the first call finally came. I’m sure it feels wonderful winning the lottery, but I don’t think anything can beat how I felt getting that first call from a lady who’d had the same operation as me. We talked and cried for hours and hours. I was the first person she’d spoken to like that in the three years since her operation. We were able to understand each other’s fears. Gradually more calls started coming and VACO was born in August 2001.
Carol with husband Alan
About a year after my surgery a Macmillan key worker noticed that I was feeling stressed and suggested I try some of the therapies available at the Trafford Macmillan Centre. I went to relaxation classes and had reflexology and aromatherapy massages.
They were all wonderful and I would highly recommend them, especially the relaxation classes which worked best for me. I also changed my diet to include at least five portions of fruit and vegetables. I was possibly only having two portions before. A Macmillan nurse advised me to take an immune booster vitamin, Selenium ACE. I still take one a day with extra vitamin C in winter.
I slowly started to feel happier about myself, but I still wanted the one thing that would make me feel like a ’whole woman’ again. And then it happened - nearly 16 months after the surgery. I was lying on the bed when I started to feel something I had once taken so much for granted - a sexual feeling.
My body was telling me something it hadn’t for all those months, and I wasn’t about to ignore it, so we went ahead and it was fabulous. We both sat and cried afterwards because we couldn’t believe it. Alan could see my joy because immediately I felt, ’I’m a woman again!’
I never expected to have those feelings again and we had so much fun regaining our sex life. It’s not just better than I expected - it’s better than it ever was before because we’re not as inhibited now. If someone has told you that you cannot resume a sex life after vulval cancer, don’t believe them and don’t give up!
If someone has told you that you cannot resume a sex life after vulval cancer, don’t believe them and don’t give
up!
I don’t know why the medical profession doesn’t address this issue. To be diagnosed with a rare cancer and then find out what a radical vulvectomy entails is just devastating. I know the issue of sexuality is the last thing on our minds then, but I believe if it was addressed early on, post-op, it would give us some badly needed hope when we need it most.
I have had the most devastating times but have come through it all with lots of help, and now feel that life is so precious.
Everyone should think about that because they don’t know what’s around the corner. Live each day to the full and don’t worry about tomorrow. I don’t. I felt like the hole I was in was so black and deep I would never come out of it. But I did, and now I am looking forward to so much - especially this April which I have declared vulval cancer awareness month. Lots of ladies will go out with me to hospitals and surgeries with posters, and we will also sell wristbands.
I’ve achieved so much in areas I had no experience of before. I certainly didn’t envisage VACO growing this big. I only ever wanted to talk to one lady...and I’ve spoken to over 900!"
See the VACO website: www.vaco.co.uk for a fuller list of tips and information about all aspects of vulval cancer, or call VACO on 0161 7475911, or email [email protected].