July 2019 my journey into my fifth decade was unfortunately not in an Aston Marin DB9 doing 0-60 in 4.6 seconds, It was one month from not knowing to knowing I had vulva cancer!
I accepted years ago that my body was unable to produce children. Eventually I was diagnosed with endometriosis and in 2010 I underwent a full hysterectomy. It was at this stage I was diagnosed with Lichen Sclerosis and sent away with a steroid cream, no advice or information. I spent the next nine years just getting on with it and my GP giving me repeat prescriptions.
In October 2018 I noticed sex was becoming painful and I felt like I had a stager when I peed. December I became ill with flu like symptoms lasting the whole month, which made my LS go bonkers, what I now know is called a flare up. I saw my GP as I noticed some changes to my vulva, in particular a spot that began to ulcerate. She explained that I’d need referred back to gynae consultant within the next six weeks. At this point I found an LS Facebook support group, which has been the most informative and supportive resource I could have hoped for. I realised that I hadn’t been properly monitored or ever told the correct maintenance procedure for using steroids.
I had to chase my appointment and was finally seen five months later in May and biopsied in June. July the month of my five decades birthday celebration, I was told I had dVIN 3 which is pre cancerous cells that had developed due to my LS not being in control. I was told I had to have part of my vulva removed!
So I spent my birthday in hospital, preparing for surgery. Every health care professional I saw reassured me that it had been caught early and I didn’t need to worry. It was at this point hubby and I decided to go public and make it our mission to help raise awareness and fundraise for LS.
I had my first surgery at the end of July 2019, it was mutilating! I walked like a penguin, sitting was uncomfortable and I felt I’d lost more of my women hood! My consultant also informed me she had found another area which she had biopsied during surgery.
Then ten days later the call came to say the consultant needed to see me! Hubby and I sat in a very cozy room waiting to be seen. Then like a punch to my belly I heard the words “I’m sorry to say you have cancer!” As I processed this information my husband fell apart, it was the anniversary of his father’s passing to cancer! I went into warrior overdrive...I hugged him and reminded him that I was strong and I would fight! I then recall being told that although they were confident at removing this trespasser, they could never cure the LS, which is what had caused my cancer! I would need close monitoring and under oncology care for the next five years. We were also told we would have to postpone our Christmas trip to New Zealand, gutted because this was a belated honeymoon and zero birthday treat.
As we drove home I thought about the 1:3 statistic, at least it’s me and not one of my brothers, then another punch in the tummy...how the hell do we tell Mouse, aka my mum!
Now I’m by no means brave, I have a genuine phobia of hospitals, stems from being snatched from my mothers arms as a toddler to have eye surgery. I also have a habit of passing out if I see needles! So the next month was full of scans, blood tests and appointments. On one occasion I met a cancer nurse who was Googling LS and Vulva cancer...not quiet what I was expecting!
My next lot of surgery was to be a hemivulvectomy and bilateral sentinel lymph node removal, brutal and mutilating! So I summonsed my army of friends and family to support us on this journey. I wanted humour so requested names for my surgery,
frag vag, duff chuff and my favourite foofoo fighter!
I posted this:
You will not steal me, only change me!
You will not beat me, only would me!
You will not take my sparkle, only dull me for a while!
I will be a warrior, I will fight you vulva cancer! 💜
I’m now eight weeks post second surgery and it’s not been straight forward! I left hospital after five days, with an infection in my right lymph node wound, a plethora of medication, some to help me go to toilet, a vulva that looked like it had been fighting with Mike Tyson and hubby had to learn to inject my tummy with blood thinners, which turned me black and blue.
After a week I was just going to the toilet when my dodgy lymph wound decided to recreate a scene from Shaun of the Dead! This was terrifying and hubby had to get medical assistance, I felt vulnerable and scared! I was very quickly having to learn how to cope with a new type of “normal”! I was put on antibiotics and told to attend clinic. My wound continued to eject fluid in a dramatic way, making me nervous about leaving the house. I had to constantly ask for check ups but it was my Macmillan support worker who enabled a more joined up approach to my after care. We then had some mixed news from histology results saying that the lymph nodes did not show signs that the cancer had spread and although margins showed cancer clear there are still pre cancerous cells. I now have very bad pelvic and genital swelling, which I’m having investigated I’ve been told is probably lymphedema and I’m still having issues going to the toilet.
It’s been an emotional rollercoaster, I felt grateful in one way but feel angry and let down! I will be having my first gynae oncologist review in November to find out if I have to have radiotherapy and to check my bladder and bowel. I understand that this cancer is rare and that the reoccurrence rate in the next few years is high. I’ve been told there’s a good chance I will need more surgery, so I’m not out of the woods yet!
Without the information I have gained from the support groups I have no idea how I’d be coping right now. I’m glad we went public as I have found writing humorous posts about this journey therapeutic, I’m about to organise a fundraising festival and looking into setting up a charity. I needed to do something to channel my pain and frustrations, life will never be the same again!
So Lichen fu##ing Sclerosis to cancer I dedicate this song to you...Mylie Cyrus You Came in Like a Wrecking Ball
By Zoe Breen warrior in training 💜
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