Hi, my name is Rosalyn and I am 42 and mother to a daughter now 15 and a son of 11. I live in sunny South Africa and am married to a kind wonderful man.
After my divorce in 1996 I noticed a lump that looked like an ingrown hair on my outer labia. I didnt pay too much attention and also at the time being divorced I didnt have medical insurance either. I walked around with this "ingrown hair" growing for over two years.
Eventually I met Lukas and we got married in August 1998. His first wife had had breast cancer and so I thought that seeing I was always so healthy, never a cold, nothing serious could go wrong and Im sure he was pleased to have a healthy wife.
The following February I decided to have the lump seen to. By now it was a fully grown ulcer with a flat shiny top. The Gynae did a biopsy and I went home same day. No problem. Three days later, the gynaes office phoned me and told me he wanted to see me. Having lived a charmed life I still didn't register what was going on. Hubby and I rocked up at the doctors and went in smiling. He was very to the point and informed me I had Vulvar Cancer Stage 3. Straight after the biopsy the lymph nodes on the right side had started to swell like golf balls. I was so stunned I nearly passed out. My husband was in such shock, he stood up and excused himself to go and get fresh air. I tried to take in what the doctor was telling me but he wasn't getting through. He was going to make arrangements for me to see the Gynae Onco the next week and tried to explain the procedure. We stumbled out of the doctor and we went back to work.
My colleague phoned a friend of mine and I went there as I couldn't face anyone else. I was devastated. I couldnt believe what they were going to do to me and I felt like my life was over. I cried and cried for days and just wanted to die. I couldnt face such an operation.
Needless to say, we went off to the specialist in Pretoria and he booked me in for the op. My worst fears were "would I die?" and "would I have a sex life?". He was non-comittal to both of these questions and told me that sex was in the mind and I probably wouldn't die but would have to have extensive surgery and therapy.
On Friday 26th March 1999 I underwent a seven hour surgery and woke with a morphine pump attached in my neck. I only came around properly on the Saturday. It was over?. No way, it was only beginning. I couldn't move my legs. Every time I tried to move them electric shocks sent me to the roof and I just screamed and screamed. They had cut through the major nerves to my legs to remove the lymph nodes. I stayed that way until the Tuesday, just lying there and sobbing. Cleaning time was the worst. It was agonising and when I saw them coming with that trolly I started pumping that morphine like mad. They had to hold me down and sit on my arms and legs to be able to clean me and I screamed. Boy, did that hospital know I was there.
On the Tuesday evening my parents and husband tried to get me out of bed. My legs wouldn't hold. I had a catheter in and drains from both legs getting in the way too. Not having moved for so long and having had no bowel movements during this time, my bowels collapsed as soon as I stood up. Most humiliating. Back to bed I went. The next morning I decided it was now or never. It took me an hour to inch myself out of the bed and onto solid ground. Inch by painstaking inch. I stood still for ages and then started to pull myself along using my toes as my legs wouldn't work. I believe the operation to the lymph nodes was worse than the vulvectomy itself. That part seemed relatively painless in comparison.
I carried on daily dragging myself along by my toes until my legs regained a bit of function. They had swollen up to bursting point and were dead as doornails.
Two weeks later we went home. All over? No!!! Gynae Onco phoned and said I had to go back for 6 weeks radiation treatment to the whole pelvic area. OK, so no chemo, that was a blessing. Two weeks into the radiation treatment I wish I had had the chemo instead. My bladder conked in along with my intestines and bowels. Unable to go five metres away from a toilet and that became a nightmare too. I developed radiation proctitis and my bowels started to shred. Each bowel movement was a gateway to hell. Eventually the radiation was over and eventually I could go home. Time to recover. Time to focus on my family again, time to be a wife and mother. I was still wobbling around on my legs and was exhausted. The bladder and bowels have never regained their full competency and I am forever having accidents in the worst of places. When I gotta go, I gotta go.
I started back at work and threw myself back into life as much as possible and slowly my legs started to function properly again. They remain dead to this day, but they dont swell so much anymore. My cellulite has had a continuous party though. I didnt cope too well mentally then as there was no support group at the time and no-one could actually understand what had happened to me. I wanted to drive under the nearest oncoming truck. Facing a cancer is scary, but facing life afterwards is even scarier. I ended up under phsychiatric care for a while and was put on Zoloft. Much better, now I could cope. Since then I have gone from strength to strength.
Sex is possible, but as the vagina is now much shallower it can be a bit painful. I am on hormone replacement therapy (as the radiation nuked my uterus and ovaries)as well as the Zoloft, with the result that my libido has got up and gone away along with my sexual self esteem. I have difficulty seeing myself as a sexual person anymore, which is sad as we only had the first six months of our marriage before this bomb struck. After the operation it seemed as if thoughts of sex were uppermost in my mind and I had to prove I could still function in that way. Once I proved I could, I lost all interest and avoid it now. I still have to work on that aspect I suppose. Apart from the sex, my life has regained its zest again. I lead a perfectly normal life - I work, dance, play cricket love my kids and husband and I can go for weeks without even thinking about the operation anymore. I have been for my regular check ups and so far I am clear.
I had never heard of Vulvar Cancer before but now I have lived through it and understand the pain and consequences. Hopefully my experience can be put to good use to help others realise it is not the end but a new beginning in so many aspects of life, both spiritual and physical. It is a long road to travel but it does have an end and now we dont have to travel it alone, we have friends who really understand how we feel. I have adopted a life saying of: " Pain is inevitable, suffering is optional". I refuse to suffer and the pain has gone, and now I have my life back. My husband still loves me and my kids think Im the best.
Lovies Roz |
