Just been to see Dr. Not good news I know I have vulva cancer had 3 lots of chemo and had more scans and biopsy so just been back to sort out next steps or so i thought, but no, more bad news. Been told something on my lung so got to have biopsy on that now too. So 2 more weeks or more of waiting. f that comes back OK got to have a 8hr plus op. Got to looses bladder part of bowel so will havev2 bags but I have a kidney transplant so saying they want to move my kidney as well and then that could mean it might reject after all these years so could end up on bloody dyaslsis what the hell do I do??????
Ive really had enough of all this I don't drink smoke take drugs etc so why me again. I'm so angry
Sorry I know others have had it bad too just need to rant
+/*Hi Trish263,
I am sorry you are having such a difficult time.
I can see you have had some really helpful and supportive replies already, but wanted to say I have had vulva cancer and am always here for a chat.
I don't have experience of anything more than surgery to remove the tumour and 2 lymph nodes, so cant help with any of the things you are going through, but I am here if ever you want to chat. I also fully feel your frustration around not smoking or taking drugs, I don't even drink, which makes it feel very unfair when they are some of the risk factors.
Take care and I'm always here if you want to chat or even just need to vent.
Hi Sarah H21
You have certainly been through it but You we’re so strong and resilient. I am in awe of you.
Now you have come out the other end and life is good for you.
I’m hoping to just be able to get the chance. I’m having immunotherapy treatment at the moment. 2 drugs intravenously every 3 weeks for 4 treatments. I’m hoping it stabilizes it. I’ve to go for biopsy’s on my lymph nodes in my groin as they know it’s there it not to what degree. I’m just praying that it’s not too much so that I can go ahead with the main surgery. I was so shocked and scared at first but I have come to terms with it. I feel that it’s a huge chance to give me my life back. That might sound melodramatic but that’s how I feel.
You say you had a 50/50 chance but decided to take it anyway. I feel like you. I think yours was more contained than mine but I just want the chance of surgery and I’ll hopefully have a good outcome like you
lots of love 
️ xxx
My chance went down by the time of my surgery-the surgeon told my partner when I went for the op I had a 30% chance of a good result/surviving. But I would still have done it as 30% chance is way better than my zero chance of any long time survival without it. I really hope you can get the same chance. It’s life changing but life saving and that’s the most important thing.
I didn’t feel particularly strong- I was weak from constant pain before the surgery and my previous failed operation but I still wanted the surgery. I thought that the pain I was in would be replaced by different pain but it would be temporary. I was right. I am keeping everything crossed you will get this chance too. I have my life back.
Sarah xx
Hi
wow to go down to a 30% is still a chance as you say. When it comes to saving your life and having the surgery there is no decision to be made. Surgery will win every time.
I’m also in constant pain just now. I feel like I’m sitting on a razor blade. And constant burning 
my tumor is severely restricting my pee so I think it’s not going to be long till I have to have a catheter fitted.
I got one done about 5/6 weeks ago but I only lasted about 12 hrs with it. It was extremely painful. So they took it out and I’ve been managing it but it’s getting to that time when I might need to get it done. But it’ll have to go in through my stomach as doing it through my urethra is unbearable.
I never thought this would be happening to me.
lots of love ️ Xx
Oh Genie girl
This pain must be so debilitating for you. How are they helping you to manage it and cope? I can’t imagine how difficult and painful it would be to have the catheter given the position of your tumour. When will your immunotherapy treatment finish? You must be desperate to get on with everything.
Sarah xx
