UNDERGOING UNDERCARRIAGE PROBLEMS
by Jenny Walton

Being a gynae-cancer patient isn't much fun! Especially when the gynaecological 'bits' affected are external. If you think bearing and giving birth to a baby is an undignified process, then believe me, having cancer of the vulva is even worse. It takes a lot of trust in and liking for one's medical team to be able to lay back and think of England.
That's why, whenever I give a talk at a medical conference at which any members of my own team are present, I take great delight in publicly stating what a pleasure it is to be present in the same room as them and not have to take off my knickers. It's a known factor that from the first time a female requires medical assistance with her gynaecological parts, any dignity she once had is speedily thrown off with the aforementioned undergarment. No matter how often she is told that, to the medical personnel, dealing with her undercarriage and its bits and pieces is, to them, all in a day's work, to the patient, her very innermost privacy is being invaded.

I can treat it all humorously now, the fact of having lived through a cancer, having been scared at re-appearances of the hated disease, and the need to appreciate each day just because I'm still here. But it obviously wasn't always that way.
I was first diagnosed with having pre-cancerous cells of the vulva in early 1998 by a gynaecologist at Scunthorpe General Hospital (North Lincolnshire). I thank God I have a GP who didn't hesitate in referring me on to her when the symptoms of what appeared to be merely vaginal thrush worsened. At the time of diagnosis, I was informed that the problem need never change into anything more sinister, although it would remain with me for the rest of my life. However, I was reassured; I would also always be under medical care, with regular check-ups to monitor the condition. I left her consulting room feeling fine. This wasn't going to be a problem - just another long-term nuisance!

Treatment took the form of oestrogen and creams and, over the following months, I underwent occasional routine biopsies.
In early 1999, I became really scared and thought the cancer had turned malignant and moved further inside my body. My abdomen swelled up and was extremely uncomfortable, and there was vulvic bleeding even though I'd gone through an early menopause more than a decade previous. But a telephone call to the hospital, followed by a speedy appointment, and I was told what was wrong: fibroids in the uterus. I must be one of only a few women who can say that to be told she would need the removal of all her reproductive organs, that is, undergoing the good old hysterectomy, was actually very happy about the idea. Not only did I not have malignant cancer, but also redundant parts of me that could also have been in danger from the disease would now be gone for ever.

Over the following months, the irritation in, and some bleeding from, my vulva grew worse. Visits to the hospital became monthly ones as the gynaecologist tried to ease the situation with different creams. Biopsies showed the problem was still pre-cancerous, however. Then, in late October that year I went along for the routine check-up and was pleased to be able to say the condition seemed to have stabilised. Examination also backed this up. But a routine biopsy, under local anaesthetic, was carried out anyway. Thank God.
The worst possible results came back a fortnight later. I was told, via a telephone message on a Friday afternoon from the consultant's kind and friendly secretary, that she needed to see me the following Monday. I'm sure all patients remember the time they were given the bad news. Even now, I still feel very emotional about that occasion, remembering the short wait in an empty waiting room, being escorted to the consulting room by a senior nurse, the door quietly closing behind us, and those words, 'Hello Mrs Walton; I think you know why I've asked you to come, don't you?'

Yes, I did. Of course, I'd guessed, although part of me argued it couldn't possibly be so. After all, the condition hadn't appeared to have worsened, had it?
The next period of time was handled so very well by these ladies. They both sat close to me, spoke with gentleness and compassion, gave me coffee (not the double brandy I said I'd have preferred), and gave me their time. They had wanted to call my husband from work to drive me back home, but ' independent as always ' I said, 'No', I'd be fine. I agreed to ring him and them as soon as I reached home; that way they knew I was safe and supported.
A week later, in mid-November, I had a partial vulvectomy. The worst time was when the stitches had to be removed a couple of weeks later! Ouch! Sadly, that operation didn't clear the problem, so in January 2000, my case was handed over to the gynae-oncologist within our network (Humber & Yorkshire Coast). He carried out a vulvectomy with ipselateral groin dissection in one of the Hull hospitals.

The operation was a success.

However, that wasn't the end of it. I naively believed that, because I'd been given the 'all clear', all that remained was to recover from surgery, get back to full health and strength, and resume life as it once was. That didn't happen.
I'd been told a little of what would happen during surgery and the fact my lymph gland might have a little discharge for a while afterwards, but I wanted to know more. So I started looking for more information during the month between the last two operations, and continued doing so afterwards. But the only material I could find was on the Internet (the hunting ground of so many). It was a source of some knowledge but not answers to the many questions I was beginning to ask. With hindsight, I now know I should have been given more information about:

a) Exactly what was going to be done during the vulvectomy - I was given some procedure detail, but not enough. For example, when I tried to examine myself after the swelling had gone down, I had no idea what was going on. I looked quite different - and where on earth was my clitoris?

b) The fact that I would tire easily, both physically and mentally, and 'I accept this now' never regain my old active self. I no longer berate myself as being a weakling; it's just a small price to pay to stay alive.

c) The fact that panic attacks were a possibility. I thought I was going crazy when I had these symptoms ' until I understood what they were and learned how to deal with them. I found out by accident, reading a novel, of all things. A character in the story described the symptoms and I thought ' that's what's the matter with me. Understanding gave me the ability to cope with them. They still occur ' less often, now, and for shorter periods. No doubt they'll disappear eventually.

d) Someone to talk to. I wasn't offered any support at all. I was completely on my own, trying to hide my fears, doubts, and all those other horrible emotions that hit anyone whose life is threatened. I desperately needed someone with whom I could discuss my general symptoms, problems and vulval cancer in general ' both a medical person and/or a fellow vulval cancer patient.

e) How the operation would affect my sexual life. The entrance to the vagina was far too small to allow penetration, and subsequent stretching and a Fentons's operation (both types of procedure done under general anaesthetic) did not help the situation. Some ladies are able to resume a sexual relationship but no longer enjoy the act.

With regard to the latter point, ladies now are 'restructured', if necessary, during the vulvectomy by a plastic surgeon who works with the gynae team. Two years ago, I was offered and accepted, this reconstructing procedure ' known as the Lotus Petal Flap ' on the left side of my vulva. It entailed, in layman's terms, cutting the vaginal opening to make it larger, and repairing and restructuring the whole area with a strip of petal-shaped flesh brought round from the crease between buttock and thigh. Unfortunately, it wasn't enough help, and what with scar tissue and hardened skin, I need to have the same thing done to the other side of my undercarriage. That will happen this spring. It will be of reassurance for anyone affected by vulval cancer nowadays to know that the lotus petal flap procedure is carried out immediately after the vulvectomy ' it is not a separate operation. In other words, the plastic surgeon and gynae-oncologist work as a team.

Because of circumstances, I didn't have the reassurance of continuity. I've been moved from GP to gynaecologist, and on to a gynae-oncologist. Then the latter retired and my case was passed to another gynaecologist until a new gynae-oncologist came along. He left after a couple of years to go to Guys in London, and now I'm back with yet another gynaecologist. (He's great and I trust him implicitly.) As yet, our cancer network hasn't been able to fill the post of gynae-oncologist.

It was difficult, embarrassing, for a long time, to actually say aloud, 'I have/have had cancer of the vulva'. But I eventually 'came out', in August 2001, and contacted the media about my story, because I believe there is a great need to illustrate the importance of 'vulval cancer awareness'. Warning symptoms can be so easily mis-read by a woman and, therefore, mistreated.

The disease has tried a come-back, in pre-cancerous form, a few times, but is quickly exorcised. Naturally, I now regularly examine myself. Symptoms can appear to the eye before they're felt. (A mirror isn't just for looking at your face, you know!) I've now lost track of the number of times I've been an in-patient since that first 'all clear' in 2000. There seems to be one little problem after another, and I've been told I shall be in and out of hospital for the rest of my life. Yet, looking at it practically, that's a better situation than not being here at all!

I now work only part-time in my old job as a self-employed writer, because any excess 'energy' is given to fulfilling my need to do the proverbially something for others who may be hit by a cancer. Consequently, besides promoting vulval cancer awareness, I've become involved in a number of user-group activities and cancer-related organisations.

It's a good life, isn't it?