Not Brilliant News.....
So, I haven't posted on my blog for a while, which has been a good thing as I've not needed to. Which is always a good thing...she says.
After around four months since my horrendous operation to remove this horrid cancer on my vulva, I had never felt so good. No itching, no redness, no soreness, nothing. I was totally over the moon that my lovely gynaecologist had nailed this thing for me......I was so wrong....I should've listened to him. I was so so wrong.
My gynaecologist informed me that I had high grade squamous cell carcinoma of the labia skin, and as it was so insidious it may well come back, and if this was the case it would do so within six months.
There were no clear margins at all, but I was so happy that he had taken the bull by the horns and went ahead and removed a lot more Vulva skin that he had planned. Healing was long, extremely painful and very slow, but I got there in the end.
Unfortunately, much to my disappointment four months on, in February 2023, I started having a very strange "tingling" and "itchy" sensation further up my Vulva away from the original operation site. I totally knew what this was as I'd felt it before. I was due to go out to my little sisters that day so I just popped some of my DV (Dermovate) cream on and bit the bullet. The itching eased, but didn't stop, as before the operation. Once I got home I stripped off and got my mirror to check. As before, there was nothing to see, but I was very itchy.
I had an appointment with the Oncology Colposcopy Team which my Gynae had arranged for but due to the GP strikes, it was cancelled. It was rescheduled for April. Again due to strikes, this was also cancelled. I'm still waiting for my new appointment.
My GP has seen the areas in the meantime & has confirmed three new lesions have appeared and whilst I await my new Gynae appointment she has prescribed me 60 tubes of Instilligel (local anaesthetic that I can do from home by myself) and more Clobetasol Propionate steroid cream - the strongest you can get. Sleep is back to minimal, as the soreness just wakes me up every hour or so.
GRAPHIC DETAIL WARNING:
It's quite graphic, but this time, rather than my perineum, which the skin was removed from, this time it's all down the both sides of my clitoris and actually feels like I have needles sticking in it so it's very red and sore. Luckily, my amazing hubby has been stocking up on the Andrex Anti allergy wipes again which always help.
I've also been taking 135mg of antihistamines daily to allay the itching somewhat. Although this does ease the itching, it never totally gets rid of it but it does help. I've just finished my chemo cream, which was awful on its own.
As an addition to my physical health going downhill again, my mental health is really suffering now, mainly through sheer lack of sleep. I'm turning in to an insomniac. Sleep is very few and far between.
WAITING AGAIN
So, I'm now playing the waiting game yet again for an appointment back with my gynaecologist, and I'm hoping this won't take too long. In the meantime, lots of cream, instilligel and hope. I wont ever give up!
MY HAIR
Due to a combination of everything, chemo meds & chemo cream, my hair turned in to a massive birds nest. Luckily my awesome hubby sat me down in our kitchen and cut the straw like bits off. My hair is now shorter but better. He stopped the tears....
Well, now I await my Oncology Colposcopy new appointment, and I'm hoping it won't be too long and not cancelled again. My advice is the same as always......
Know your normal. If it doesn't feel right get it checked All my love Sal xx
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