I first became aware I had this terrible disease when for no apparent reason I couldn’t stop itching and burning out of the blue one week almost exactly a year ago! I remember the time because we were due to go on a celebratory cruise for joint 50th and 60th birthdays for my husband and I and also as a delayed honeymoon.
In recent years intercourse had been problematic for us for quite a while, my husband has prostrate cancer and after having biopsies, it had left him with erectile dysfunction. I would also need an antibiotics every time to stop the reoccurring urine infections that I would get every time we made love. I also have Fibromyalgia and am registered disabled so am used to unusual pains etc.
However this burning and itching was something else, I also noticed one side of my labia seemed longer and thicker than the other.
I booked in to the GP, she didn’t say anything but agreed to send me to see a consultant gynaecologist . As I have a private health care scheme and was going away in 7 days I told her I would see someone privately first of all.
My first appointment was at a BMI Hospital. I saw my consultant, who barely spoke to me. She asked me to pop up onto the couch, had a quick look. As I was getting dressed she told me I had Lichen Sclerosis , that I needed to apply this steroid she was going to give me very liberally, all over 3x a day that I should get through 3 tubes in about 1 month when she would review me for a biopsy to make sure there wasn’t any cancer, and off I go! My head was swimming!! I had just been given a diagnosis for what? What is it? What happens now? Will it go away? Why do I need a biopsy? What was this medication?
I came home and cried. Then I looked up the words Lichen Sclerosis and found the name Jane Lewis, I messaged Jane on messenger and explained what had happened, she gave me the details of the the Lichen Sclerosis UK support group on Facebook. This turned out to be my lifesaver. Thank goodness I listened to my wonderful friends/family on there who said” how much dermavate”!!!!!! You will be red raw!!!!! So I only put on the normal twice daily etc.and was guided by my wonderful experienced ladies and pharmacist.

After returning from our cruise I decided to see another consultant as my LS was still out of control and my Vulva was looking very strange. I researched and found a lovely consultant locally. When I saw her she was indeed excellent and it was such a different experience. She took the time to explain what LS is, where exactly I have it, she then gave me a whole leaflet on the best ways to look after it how to get into remission. Then she said that she didn’t think I needed to go through a biopsy as it was too stressful and that someone like her was experienced enough to see and judge it. I explained to my consultant that I couldn’t afford to see her any more privately and she said that’s not a problem as she would ensure I could see her on her NHS patients list. A fabulous, kind doctor who even took the time several time’s to follow up with emails sent home. I left with more knowledge on how to use the dermovate and on a strict regime of using it with moisturisers etc.

Finally my NHS appointment came through, at this point my LS was again out of control due to going through an incredibly stressful time. I went along to it, only to find I’m under a different doctor yet again. He takes one look, says “ hmm not sure what that is, but don’t think it’s LS ( even though I showed him the letters from both other consultants) then he calls in a more senior doctor who then agrees with him! They then decide I need a vulvoscopy and to be seen by a Vulva specialist. But this again can take time and if I could go privately I should.

Again I’m bleeding with an incredibly sore Vulva my shape is changing rapidly, so I ask my private Gynaecologist who she would recommend. Then I go and see this fantastic lady a Vulva specialist. . Again this lady takes one look, says it’s LS with moderate -severe vaginal atrophy, this is actually the first time anyone had said these word. I knew this, but no one had confirmed it!. I felt sick, now it had been confirmed, my worst nightmare. She says she doesn’t need to do a Vulvoscopy straight away but can do it later on, as I’m booked in on the NHS I may as well have it done there anyway. . I get the pricing for it privately anyway just in case, and I’m covered. But she also says I can see her in the NHS. She gives me loads of advice, everything from diet to what to wear. She has now also included 2x a week vagifem into my meds to help with the VA and said to use coconut oil in the morning and dermovate in the evenings only now.


My appointment for the NHS arrives, for my vulvoscopy and to see the consultant. I’m expecting to see my consultant but alas it’s to see another doctor but someone who I’ve heard is excellent. As before however they need to change the appointment. When they reschedule it, I make sure there are the two appointments together, vulvoscopy and consultation.
I go along and wait for over 90 minutes for a 09.10 appointment. I see this lady who asked a few questions, re what meds am I on how long have I had symptoms, I try to bring up my vaginal atrophy and my menopause symptoms to see if she can suggest extra Vagifem or HRT as has been pointed out in the groups. Her reply is simply “ I’m only here for your Lichen Sclerosis, you can ask your GP about those things”!! I honestly couldn’t believe this.
She then asked if she could “take a look” and that she had a student with her so would I mind? At that point I was so pissed off if the entire Welsh Guards came in I just didn’t care. She had a quick look, did an internal where she said my vagina was extremely tight as well as the pudental nerve suffering from being over stretched . She followed that with a “you can get yourself dressed now and we can talk over by my desk”.
She told me that she wasn’t entirely sure if I had lichen Sclerosis, but that I was extremely tight and that my pudendal nerve was overstretched! She also said if I wanted she could organise some physio for my tightness, but it was up to me at this moment in time? Then she showed me how to sit and loosen my pelvic floor muscles which are way way too tight! “ By now I am so fuming I can barely speak, not only has she refused to answer my questions on my vaginal atrophy but she also hasn’t done the vulvoscopy which I was booked in for… plus she is guessing about my diagnosis!
I couldn’t get out of there quickly enough! I mumbled something about not taking up the physio yet, then she simply gave me a piece of lined paper with dates on which she asked me to record what I used each day for the next six months, before handing me a sheet to book again in 6 months time.
I was in and out in about 10 minutes.
After this awful appointment I telephoned the secretary to ask to be moved from her clinic to one of the others clinics. Her secretary actually had the Gaul to argue with me! When she said why, I replied that I was supposed to have had a vulvoscopy and it wasn’t done. The secretary answered “ do you even know what that is? She had a look at you didn’t she”? To which I replied” A vulvoscopy is where they place an avid over the Vulva and look through a special microscope! She went very quiet, and simply agreed to remove me from her list and hand me over to the others.


Why is everything such a battle for us. I’m now waiting for my new appointment to come through and with any luck it will be with my lovely Vulva specialist, but then again in my experience. Who knows. Meanwhile I’ve been back to my wonderful GP who has put me on HRT so for now I’m just hanging in there.

I had grown up with endometriosis and the lack of GP knowledge over “just sore periods” and being told to have babies as that would fix it! Roll on to a ruptured ectopic and 9 miscarriages, none explained but possibly down to my endo.

At 44 I decided to get sterilised as I could not go through any more emotional or physical losses. GP said no but referred me to gynae who agreed. I was told that my remaining ovary (remember the ruptured ectopic) was cystic so they removed it. Nothing else was explained.

About two years later I felt awful, it was like I had 3rd degree burns in my groin, all around my vulva and going all the way back to my bottom and beyond. GP took swabs and gave me steroid cream. It didn’t work, I was in severe pain and my marriage and work were suffering. Eventually I was referred to the Colorectal unit! Why I asked? Well it could be piles!! After very invasive and painful examinations such as colonoscopies etc the consultant said there was nothing he could do,oh by the way are you in the menopause yet?

You could have slapped me! Menopause? Surely not! I feel stupid because although I know a lot about my reproductive system, I would wouldn’t I, it had never occurred to me that the loss of that final ovary would have sent me down that rabbithole to Menopause land. I started investigating and went back to GP who insisted on blood tests! Pointless if I have no ovaries but what the hell, had the tests, yes you are perimenopausal. No advice, nothing. I was so low, no sex, felt like I had the flu, my genitals were on fire and obviously this was sending anxiety sky high!

It took me two years to get HRT, sequential to begin with which flared my endo so I demanded combined as I still have this useless uterus, see I was now educated in HRT? My GP and nurse weren’t, this HRT was going to shorten my life according to them! Poppycock!

The burn and cuts on my vulva were still making my life a misery, to the point of suicidal thoughts. Pain on sitting, pain on standing, pain on lying down. An excruciating need to scratch so I ended up wearing mittens to bed, like a bloody baby!

Eventually I self-referred to the Sexual Health Clinic. In the Highlands we no longer have a Menopause Clinic! So off I went, in disguise, surely only STI patients need sexual health? This consultant actually examined me! She was shocked at how severe this thing called Atrophy was! Atrophy I asked? Well now with a brain full of even more knowledge and a nice hospital prescription of Vagifem pessaries, antibiotics, steroid cream and lidocaine off I go. Things started to improve, it was a bloody miracle finally! Then it came back. Multiple appointments later I’m told vulvodynia. Nope I know it’s not, check me for LS please. Biopsies and swabs show no LS thankfully but what is happening? Just use the numbing Lidocaine to re=educate your nerves!!! I’ve been going round in circles!

GP is now fighting me over HRT, Vagifem and Estriol cream, the things that make my life liveable. Through groups of other women I have found out that Lido thins the skin even more! I can’t get transdermal gel in my area so I’m taking oral combined HRT, no surprise the GP is trying to scare the life out of me. It is a daily struggle to be a wife, do a job and not just give up. The physical pain, the mental torture and the constant thoughts of “is this going to be forever?” It hurts to pee, itkills to poo and my inner vixen has run away. I jump in meetings often, like I’m stabbed, I make excuses, die a little inside and just get on with it, this miserable existence focussed on my genitals that no longer even allow me to be myself.

You probably don't think the two would go together but they do. I was in my early thirties trying for a baby when I was diagnosed with a premature menopause. It's a diagnosis you never think will happen to you when I looked around at all my friends they were all married and having children whilst I couldn't even get off the starting block. Due to a rare complication we decided to end our fertility journey and find a new path in life, I changed jobs, we got three dogs and I learnt to live with the menopause and feeling old before my time.

My first episode of vaginal atrophy happened out of the blue over the Christmas holiday, I started to get burning and an itching sensation down below. At first I thought it was thrush and I went and got some caneston from the chemist and waited for it to take effect. It didn't! After a few days I was desperate and visited a Dr at the walk in centre who asked if I was sexually active and if it could be an STI or infection, I didn't get much help apart from the suggestion to use sudocream! I went home feeling down hearted and continued using ice packs for the next few days wondering if I would ever feel normal again. How would I be intimate with my husband again when I could barely tolerate being examined, how would I go back to work without waddling or struggling to sit down!

I only noticed an improvement when I changed the dose of my HRT and this was when I had that light bulb moment that it was vaginal atrophy not thrush or a urine infection. Here I was a women's health nurse who hadn't spotted my own symptoms I know they say that nurses make the worst patients but vaginal atrophy hadn't even been on my radar. I thought to myself if it could happen to me with all the training I had as a nurse how many other women are in the same situation suffering at home with an icepack.

It was hard enough talking about menopause in your thirties but talking about your vagina as well! Everyday at work I would talk to ladies about women's health and all sorts of personal experiences but once I took my uniform off it was like I was another person . Something had to change and I decided to make it my mission to talk and educate to women on all aspects of the menopause. I went back to university to study a post graduate qualification in reproduction and recently took up part time work giving talks on women's health and the menopause. After I had done a few talks I thought to myself I am going to be brave and mention the V word I don't want to lecture, just give women the opportunity to learn and talk about their experiences. After all I have been that girl sat on the icepack.

It's tempting to hide in the house and hope it goes away but it's time to be brave and talk about it a bit more, as women we are experts in looking after everyone else it's now time to look after you. Don't be afraid to do your research and be your own advocate. Plus be brave and talk about it with your friends, for me at may not be relevant to some of my close group of friends right now but something that may effect them in the future. Don't sit on an icepack at home, be brave and open the door to and talk to others.

Some cancers you can get rid of and, if you're lucky, block them out and live your life like you never had it. Vulva cancer is not one of these. Even the minimal surgery is disfiguring and if, like me, you have all your lymph nodes removed you are left with yet another reminder; lymphoedema. Mine starts in my lower abdomen and was down to my knees but had now spread to my lower legs. On good days walking feels like wading through treacle, on bad days putting one foot in front of the other just isn't an option..
The worst affected area of all is my genitals. The swelling and pressure is so painful I can't even sit properly. My mons is more like a mountain and out of my fat suit I pack a bulge that would make Beckham green with envy!
I haven't been to a lymphoedema clinic yet and don't have a compression garment or tights. There are several reasons for this;
I can't bear anyone to look at me or touch me and am having counselling to try and get me there as I really need help
The garment I was measured for by the district nurses is about 6 sizes too small.
My fat suit plays havoc with my umbilical hernia and causes excruciating pain in the form of colic so what the hell would a proper garment do to me?
I really feel for those ladies who suffer from primary lymphoedema but some of them really look down on those of us who have secondary. This makes you feel even worse about how your body looks and you just feel ostracised with nobody to turn to.
It's a horrible affliction, and when you beat cancer you still have a lifelong battle ahead of you with this bastard. The doctors play it down, make it sound insignificant and easily managed, in other words they know fuck all.

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 💜

I suppose my story starts back in 1988, I was 21 years old and had just had my very first smear test and guess what, it came back with abnormal cells, I was so scared, didn't know what to expect, the only information I was given was a small A5 leaflet, so anyway I had to have a colposcopy followed by laser treatment, this may not be relevant to my vulva cancer but what is, is the regular smears and check up's I had to have.


Jumping ahead, I gave birth to my first child, my son, in January 1993 and very soon (I mean just a few weeks) after I developed an itchy lump on my vulva, I wasn't particularly worried, thinking it was something to do with the very difficult birth I had, anyway at this time I was having smears every 6 months, I mentioned the itching and the lump and was told I had a bit of thrush.


My smears and check up's continued, nothing abnormal with the exception of regular thrush, I then fell pregnant with my second child, whilst having a hospital check up they noticed I was overdue my smear, they made me have one there and then, it was done by a Gyn, by this time my lump and the itching was getting worse but still tolerable, she (the Gyn) said its all good and nothing to worry about. I gave birth to my daughter in November 1994, another very difficult birth, suction delivery and way too many stitches. I was sent home within 24 hours with an infection in my stitches. I had to have the stitches taken out, so I had a huge open wound that took 3 months to heal, during this time, I saw my doctor, several nursed and 2 OBGYN's.


My point in giving you my history is that I was seen by a lot of medical professionals and I was told "it is just thrush and nothing to worry about", so I didn't. As time passed it got gradually worse so I just started using more cream, changed brand, was also prescribed a cream for a fungal infection (not thrush) but still didn't worry.


In 1999 I had another abnormal smear, as before I had my treatment, I knew what to expect this time so it wasn't as hard for me, but again the Gyn was not concerned about my vulva issue. I was back to quarterly smears, then half yearly and yearly, then the breakthrough, I was told everything was good and I could go to 3 yearly smear tests.


I lost count how many people saw my vagina, from nurses to Gyn's and nobody was worried about what I called "my rash"
Over the years my rash got worse, the lump got bigger, smaller skin tag like lumps appeared and the itching, oh that itching was horrible, it woke me up several times in the night, for years I hadn't slept through the whole night, I continued using thrush cream and got very paranoid about my cleanliness, so starting bathing four times every day.


in 2015 I noticed a lump in my groin, I didn't get it checked out as we were going through a lot with my mother in law who was very, very poorly and passed away in the December. Throughout the year the lump kept getting bigger until one day in February 2016 I stretched and pulled my groin and the pain was horrendous, thinking I had a hernia, my husband took me to A and E, got there at 9.30am, had several people check me over "Yes Mrs Hinch, looks like you have yourself a hernia" spent most of the day waiting around but I did get a CT scan, they scheduled me for hernia surgery and sent me to the ward, to await my surgery that would be around 8pm. At 9pm (yes 9pm) a doctor came in to see me and told be my CT scan didn't show a hernia, for some reason I asked what were the chances of it being cancer, he just said "pretty high" and walked out, thanks mate, what do I think now, what do I do, need to talk, nobody to talk to, hmm phone hubby, he said he would come straight away, so I went out of the hospital and being a smoker decided to chain smoke whilst waiting for my husband, when he came I just poured everything out and burst into tears.


The following day, still in hospital, I was visited by a consultant, a doctor and a nurse, with a very large needle, the nurse talked to me, the doctor held my hand and the consultant stuck the needle in my groin to get a sample of what was inside. oh the pain, now I know why they came in a gang of three. A couple of hours later I was sent home, with no diagnosis, with the exception of a CT scan report that showed no issues to any or my organs. Well I suppose that's something.


A few days later (I was on sick so not working) I was rudely awakened by a phone call, PCH Gynaecology Unit, "we have made an appointment for you blah blah blah" oh my god, I thought the worst, you know after all the laser, cancer was the first thing that popped into my head, my hubby, my rock said don't panic babe its probably nothing to worry about, bless him, he tried so hard to stop me from worrying.


I arrived for my appointment and went through, had a chat with the Gyn and he said he wanted to give me a good check over, so I had to go into THE ROOM, you know, the one with the chair, the stirrups and the TV screen. Anyway, stripped the undies and got in the chair, legs all akimbo, not so dignified, he took one look and said "it looks like a type of skin cancer, we need a biopsy" so I had a local anaesthetic, ouch, and he took his biopsy, the nurse said "you can watch on the monitor if you want" err really no thank you. had that and a full check up including a smear test and was sent home. So we, cause hubby came with me, went to the hospitals Costa, told him everything, I was still numb so didn't even think how much pain I would be in very soon, ouch.


Why oh why do they always ring so early, yes a couple of days later I had another early morning call, again, "good morning Mrs Hinch we have made you an appointment" that was quick, too quick, panic, cry, oh my god I must have cancer.


On appointment day, I went through to his office, he sat me down and was so blunt, "you have cancer of your vulva, at the moment it is stage 2 but if we find any more areas with cancer the number will go up, here are some leaflets, thank you Mrs Hinch, Addenbrookes will be in touch for your follow up, goodbye" really, is that it, no help, no explanations, what do I think, how do I feel, I am so bewildered I haven't the foggiest.


within a week of my appointment I was sent for another CT scan and an MRI.


When I was called with regard to my results, the Gyn/oncologist was on holiday so they asked me if I wanted to go to Hinchinbrook, what the hell I thought, let's get it over and done with. Oh what a difference, the staff there were so nice, kind and friendly. I was told my vulva cancer was a scuamouse cell carcinoma (argh can't spell it and it had spread to the lymph nodes in the left and right groin and my abdomen, so the number was now 4b, they looked very sad, which prompted me to as what are my chances, their reply was "minimal"


The next couple of weeks went very slowly, had a few appointments, treatment plans, lots of confusion and tears.


Then I did kinda give myself a huge kick up the backside, did I really want to fall apart, I have a lovely family, I have great friends, I need to be strong, I want to live. That was the moment my view on this journey changed, I am going to beat this cancer.
I started my treatment, not at hospital, my friend had just qualified as a hypnotherapist, he offered to help, so I took him up on his offer, he spoke to my "subconscious" and told it/me to work with my treatment and help me to cope with the treatment side effects, well more complicated than that but that it in a nutshell.


So I arrived at Hinchinbrook for my first treatment that was an all dayer, well they all were but hey ho, petrified of losing my hair I opted to try the cold cap, so I had to be there earlier and leave later for each appointment. my days consisted of wet hair, put conditioner on, put cold cap on, switch machine on and freeze to death lol. Find a vein, ok find another vein cause that one don't work, oh dear neither does that one, finally we found one, canula in. steroids into canula followed by piriton, sickness meds and god knows what else, "Ok Mrs Hinch are you ready for you chemo" I had an hour and a half of a chemotherapy called Carboplatin followed by three hours of a chemotherapy drug called Paclitaxol, then another one hour wait with the cold cap, it has to go on before the chemo and come off after. Well except a small allergic reaction to the Piriton (that's a bit ironic isn't it) I got through that pretty much ok.


I now had three weeks until my next treatment, I was off sick but I was able to work from home, so I kept myself busy, hubby took me out shopping at the weekends, you know the nice kind of shopping, clothes, shoes, afternoon tea, watched movies that made me laugh and I stayed very strong and happy throughout with the exception of waking up in the morning, when the first thing that comes into your head is "I am going to die"


This three weekly cycle went on for five treatments, the next step was the radiotherapy, but first I had an MRI to see what they would be looking at, well, well, the treatment was working almost too well, they were all quite surprised, my vulva looked clear, so did most of my lymph nodes. my next job was those tattooed dots, which I am still thinking about getting tattoos on :)


Started my radiotherapy journey, 25 sessions, 10 minutes, daily with a session of chemo, Cisplatin once a week, now that did make me feel sick, so I told them and they gave me more drugs, at this time I was taking 13 tablets a day.


I had imagined that the radiotherapy would be a doctor pointing a laser beam into my vagina hehe. Oh it looks like a CT scan machine, silly me, anyway I laid on the bed of the machine and the radiologist said "you might want to shop for some different underwear, pretty ones are going to aggravate you" oh no I said I am a complete underwear whore, I need my nice matching undies, hmm I really should have listened. The actual radiotherapy was a piece of cake, just laid there listening to the music, had a good chat before and after, nothing to it, hmph right up until the last week, oh the burns, the blisters, the blisters popping, on my last radiotherapy appointment I went through 5 pairs of knickers because my blisters were popping. They didn't want me to have my final session of chemo because my burns were so bad but I insisted, I thought if the treatment doesn't work I don't want to think was it because I didn't have that last chemo, so they were not happy but they let me have the treatment, but sent me home with codeine and morphine.


They explained to me that the treatment continues to work for three months and that the next three weeks would get worse before it got better, they were oh so right, my usual position at home was no undies, legs spread with a fan pointing at my poor burned legs and vagina.


I was to go back for a check up in three months, after having a CT and MTI scan. My consultant walked in and said "good morning Tracy, you are looking very well, your wig looks so realistic" err it's my hair, I used the cold cap, it worked, what I really wanted to say was come on get on with it, have I still got cancer or not, but I kept that to myself, "I am so happy to tell you that your scans were all clear, there is no sign of any cancer, it's all gone.


Thats when you go to pieces, there is no way to express that happiness.​