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In the eight years since that diagnosis, Julie, now 62, went on to develop full-blown cancer of the vulva, requiring removal of her vulva, her clitoris and glands from her groin in a series of operations, but she still puzzles over why it has happened to her.
The writer and documentary scriptwriter says: “I have been married twice, but they are the only two men I have ever been with. I have always kept myself really clean and all I could wonder was what I had done wrong.”
Looking at Julie walking around her home and garden in a tiny leafy village in North Lincolnshire, which she shares with Tim, (to whom she has been happily married for more than 31 years) four dogs and a cat, it is difficult to comprehend the extent of the surgery she has had to go through to save her life.
“I can only describe it as a mutilation,” she says, without drama. “You also don’t know at the outset that this is the start of a long series of operations, which will continue into the future - probably for the rest of my life. I only wish I had been told more at the outset. You do not realise at the start how much or how deeply it is going to affect your normal life.”
Up to the end of 1997, Julie describes herself as bursting with such physical and mental energy that she juggled her full-time writing career, doing the administration for Tim’s business, riding other people’s difficult horses, training dogs, as well as an involvement in a host of committees, alongside a family of three children and two step-children.
When she developed a thrush-like condition, she initially dismissed it as “women’s problems”, something from which she had suffered intermittently since the birth of her first child. When the itchy soreness did not improve despite medication from her local surgery, she was referred to Scunthorpe General Hospital for an appointment which she attended in March 1998.
Knowing she was suffering from “just a silly female problem” she was completely unprepared for the verdict of the female consultant gynaecologist - she had pre-cancerous cells of the vulva, although she should not worry as the condition need not get any worse. She was also reassured by the news she would be monitored regularly.
“For a few minutes all I heard was cancer and everything else went blank,” recalls Julie. Then she asked herself how she could possibly have “caught” it. Her consultant booked her in for a biopsy the following week which confirmed the diagnosis. At this point, Julie was treated as a private patient as she had medical insurance.
Julie herself got used to the idea that everything was under control and because she was calm, Tim did not worry either. For more than a year, regular check-ups revealed no problems, but suddenly Julie developed vaginal bleeding and a painful, swollen and hard abdomen. Terrified that the cancer had started in earnest, she went to see her consultant, who told her she had fibroids in the uterus and would need a hysterectomy.
“I was so happy,” she recalls. “I must be one of only a few women who has had everything taken away and was happy – because it wasn’t cancer!”
But following that operation in May 1999, the soreness in the area of her vulva, and red and white patches that occasionally bled slightly, did not respond to the various oestrogen-based ointments given by her consultant on her now monthly visits to the hospital.
Biopsies were taken regularly, too. It was as a result of one taken in October that year, she learned the pre-cancerous condition had changed.
She had refused Tim’s offer to accompany her, so was alone with the consultant and the nurse when she was gently told that the cancer in her vulva had become malignant and that she would need to have the left side of her vulva removed . The operation had been booked for the next week.
For a minute or so, there were silent tears as Julie felt her world falling apart, but the two women sat either side of her and talked gently in a way that Julie recalls was completely appropriate, even though it was before the government’s cancer guidelines on breaking bad news. She insisted on driving home alone, where she and Tim cuddled each other, shedding a few tears in fear at what the future might bring. They had been together since 1973 and were married in 1975. But, they comforted themselves with the hopes that the partial vulvectomy would sort out her problems once and for all.
It did not. She had no idea that this operation would be the start of a series over the coming years.
Following that first operation in Scunthorpe, which did not clear all the cancer, she was passed onto a gynaecological oncologist at the Nuffield Hospital in Hull, who performed a second operation in January 2000. She and Tim were not told that the next operation would require removal of her clitoris as part of the drastic changes to her genitalia, nor that the sex life they had enjoyed to that point would be impossible for a long period of time.
Up to the first operation she had just been going along with the treatment, but suddenly she felt her life careering out of control. At that time, there was no offer of psychological support, she knew of no-one else who had undergone the same type of procedure, and she was given no information about vulval cancer and its after-effects. She felt very alone. The normally calm and outgoing woman began to experience panic attacks completely out of the blue, even when working at a simple task such as preparing Sunday lunch at home.
She thought she was going mad, but had no one to talk to except Tim and she did not want to say too much because she knew he was already worried enough. She did not feel she could talk to friends or other members of the family because most had no concept of what she was going through and she did not want to add her stress to their own personal health problems.
She had expected that after the two operations, it would just be a case of recovering from surgery before a return to normality in a couple of months. But the panic attacks continued, and even after the stitches had healed she was often overcome by waves of incredible tiredness.
There was more. “Nobody told me that the scar tissue might tighten up and be very uncomfortable and that that would make having a sex life very difficult,” she adds. Despite the use of dilators and a number of minor operations, she could not have sexual relations with Tim because she was too small.
Then one day she cracked. She was, by now, being cared for under the NHS as the private medical insurance premiums had become too high to continue, especially as she was no longer able to work full time. It was while at Princess Royal Hospital in Hull for yet another minor operation to try and alleviate her discomfort, that Julie had a major panic attack in front of medical staff. As they talked to her later in the calm of a side ward, the nurses were surprised to discover that she was receiving no Clinical Nurse Specialist (CNS) support.
She was allocated a CNS, who has become a good and trusted friend to her during this cancer journey. One time, she suggested Julie went to the oncological clinical psychologist to help her cope with having to face with the uncertainty of her future; this resulted in an explanation of what a panic attack was and helped her to cope with the symptoms.
In order to help alleviate some of the discomfort resulting from her operations, and also possibly to help give her and Tim the opportunity of resuming marital relations, she was recommended by the new gynae oncologist at Castle Hill Hospital, in East Yorkshire, for plastic surgery to reconstruct her vulva. An operation called Lotus Petal Flap, pioneered by a Japanese surgeon, could create labia by taking a lotus petal shaped piece of flesh from the crease between her buttock and thigh and grafting it in place.
The left side of her vulva was reconstructed in 2003 and the other, in July 2005.
The surgery has helped make life more comfortable some extent, but there are still some days when Julie cannot bear to wear underclothes. Nowadays, many women undergoing a vulvectomy have this innovative plastic surgery done at the same time as the vulvectomy to spare them from the kind of trauma Julie has had to go through.
As to the current state of play, Julie is philosophical: “I am always sore underneath, but I am still here – and can wear knickers and trousers again, so that is a victory!”
She and Tim believe more information should have been given to them both about what they could expect as a result of the vulvectomy, and that he, as her carer, should also have had moral support.
She says that the assumption is made that it is an older woman’s disease, but it is not.
“Thank God we have a very stable relationship,” she says. “For with a couple in their 20s, 30s or 40s, it could drive them mad if suddenly their sex life has to stop. Even with us, we want to be able to make love, but we have to pull away from each other after a quick cuddle because neither of us wants to stimulate the other. Before the cancer we had a happy sex life.”
Tim admits that he has found their situation very frustrating at times, but he is just glad to have Julie alive and with him. He says: “From a fella’s point of view you do not get much support. The only person who has expressed any kind of acknowledgement of my situation was the local vicar, who asked me how I was going to be able to cope.
“I tend to treat that cancer with a bit of a sense of humour, because I can not cope with it any other way.”
“There should be more support for couples beforehand, because you do not realise at the start how much it is going to affect your whole life. You are better being told because otherwise it gets a bit bleak because you do not know whether you are going to come out of the other end of the tunnel.”
Today Julie accepts that surgery and treatment is going to be part of her life as long as she is around. She feels that the reconstructive Lotus Petal Flap surgery is a wonderful procedure and assures the young women she has visited who have been diagnosed with conditions like her own that if she stood in front of them with no knickers on they would not be able to tell the difference between her and someone who had not gone through the surgery.
She continues to write on a part-time basis – specialising in biographical and historical books and articles – but has to accept that she tires much more easily than before. She is also spends a great deal of time trying to raise awareness of the rarer cancers like hers, is active in the local cancer network (Humber and Yorkshire Coast), Macmillan Cancer Support, Cancer Voices, the Rarer cancers Forum, and gives talks to medical professionals to help them understand what patients have to go through and how they may improve their part of the cancer service.
Ten grandchildren and one great grandchild also give her and Tim much pleasure.
The journey has been a lonely one because she says it is still so difficult for the media to talk about all gynaecological cancers. She also feels there is a danger in linking conditions like hers and cervical cancer with the human papilloma virus, in that some women who have had a number of sexual partners may be deterred from seeking medical treatment for fear of being considered promiscuous, thus effectually allowing the cancer to kill them.
Looking at the kind of support there is for sufferers of breast cancer and the freedom in talking about it, she says: “I want gynaecological cancers to be talked about just as freely, and for the help for, and research of, these conditions to be considered just as important.”
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