Vulva Cancer: It started with an Itch By Deb Cook

Autumn 2017, and for the first time in years life was sweet. I had come home after living in spain for 4 years and within weeks I had a new job, a new flat and so much to look forward to. The only flaw in this perfect picture was a bloody itch 'down below' that wouldn't go away.

Since having CIN 3 when 22, and visiting the colposcopy clinic after every pre-natal appt and having laser treatment 6 weeks after giving birth, I've been extremely pro active in regards to my gynae health. By December I was making myself bleed with scratching and could feel a small thick lump. I toddled off to see my new (male) doctor and explained the symptoms. He didn't examine me and said it was a menopausal itch, perfectly normal, and gave me this stuff like lard for the bath.

A few weeks later I was so sore that I took a picture and went to see the pharmacist. She hummed, hahed, decided it was herpes, sold me an uber tub of Sudocrem and told me to go to the GUM clinic. I knew she was wrong but only had to wait a couple week until I had my smear. When I got there I apologised in advance for being clagged up with cream. We were laughing as I got onto the table and assumed the position, then the laughing suddenly stopped. She disappeared and came back with a doctor. I've always been blessed with great hearing but the moment I heard the C word whispered from the other side of the I really wished I didn't. That was also the moment I got on the scariest, most painful roller coaster ride I'd ever experienced, and part of me still hasn't got off.

I'm ashamed to say I didn't know that part of my anatomy was called the vulva. As soon as I got home from the smear, by taxi after my legs gave way in the car park, I hit Google like a demon. My search for "skin like cancer in foof flap" didn't help much. When I had my biopsy less than 2 weeks later the doctor was old school, blunt to the point of rudeness and blessed with a warped sense of humour "I don't think you need to order your wooden box just yet Mrs Cook".

The official diagnosis of vulva cancer came 2 weeks later and the ensuing weeks passed in a blur of hospital appointments, CT scans, a WLE, infected stitches and moving house. I thought the ride had come to an end in April when I went back for my check up then whallop! the curve ball that changed my life forever. The tumour had been bigger than they thought so they wanted bigger margins meaning more surgery in the same place. A biopsy from the other side was VIN 3 so they were lopping a lump off there as well and for good measure a sentinel node biopsy would be done at the same time.

I walked out of there in a daze then the anger took over and I had what can only be described as a full on tantrum in the corridor of the QE. For the first time I thought why me? Being told you have cancer is the absolute pits, being told you have one you've never heard of is really taking the piss. I had been treating cancer with Sudocrem for Gods sake!

The 6 weeks between that appointment and the second surgery were the longest of my life. I had to tell my family I wasn't out of the woods and for the first time I really saw how they were affected by all this. I had been a single mam who they had never seen ill, now they were watching me fight the most cruel indiscriminate disease of them all.

What happened on the day I went back for my surgery I can't tell you as quite frankly I don't know. Something had gone awry and I should have been there the day before to get the dye injected into the tumour site to show them where my sentinel node was. I got to the hospital sat 0645 to find out I was booked in to have all my lymph nodes removed from both groins. This procedure had never been mentioned so I had no idea what it entailed. By 3pm I was given the ultimatum; surgery or go home. Hungry, thirsty, exhausted and emotionally f**ked I apparently gave them permission to perform the surgery that has changed my life forever.

I arrived at that hospital with an overnight bag and was there nearly 4 weeks. My body rejected the drains that were meant to be in 5 days within 24 hours, cannulas had to be bandaged on as they kept popping out, I had several infections,developed thrush and was taking enough drugs to render a cart horse senseless. When the staples were removed the wounds opened is several places and lymph fluid shot out like a wild west oil strike. I've blocked out a lot of this time as I don't want to remember the pain, or the anguish, or what I called the surgeon for removing what turned out to be perfectly healthy lymph nodes.

I didn't celebrate when I was told I was all clear, I didn't cheer when I was told no further treatment was needed. I just felt numb, then sick, then angry and then the tears came and wouldn't stop. Once home district nurses came in twice a day to pack and dress my open wounds. A few new ones popped open and at one point they had to attach a machine as I wouldn't heal.

The nurses have gone now, the wounds have healed, the lymphoedema has taken up permanent residence in my legs and what's left of my genitals and the most painful scars are those you can't see. Even now, writing this with tears pouring down my face, it's as if this was someone elses nightmare and I was just a bystander. My swollen, misshapen legs are a helluva reality check..... Vulva cancer may be rare but it's very real and robs you of so much. So much needs to be done to stop other women suffering the way I, and thousands of others have. I still have a long way to go but intend to do everything I can to raise awareness.

Deb Cook