Hi Nik-1

I noticed your post and I'm sorry to hear that you're living with VIN at the moment. It's understandable that you're feeling concerned and anxious about things. 

There is a supportive private Facebook group for women affected by this condition called Life with VIN - living with vulval disease. I'm sure that you'll be able to connect with other women who have the same diagnosis and are able to share their experiences with you as well as those here on this forum. 

I hope this helps. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi , don't feel stupid leaving it so long ! There are people in life who are always at the doctors and others who just don't go I have noticed ! Sometimes we think we don't want to bother anyone ..... sometimes it's just embarrassment ! Yours all happened very quickly too not that it's an indication that anything sinister is going on it's just prob that they had an available apt . Who knows ? I can understand your worry as I found the waiting the worst !!! I said to someone recently ' an hour in your life is a week in mine' as when we are waiting for a call back or results it's terrible ! When is your apt to discuss results ? I am sorry I don't know anything about your condition but I do understand your worries .
how are you after the op ? I was very sick straight after op and didn't realise how bad I would feel ! Bet your sore ! 
Keep in touch if you want too . 
Best wishes and my thoughts are with you and sending positive vibes your way !!! 
Sally 

Hi Jenn 

Thanks for your reply I only found out about VIN when I first saw the Dr at the end of December. (Even though she's a Gp she specialises in gynaecology and works at the hospital one day a week.) and diagnosed me straight away with VIN. 

Unfortunately I am staying away from FB as I can't deal with it atm. Also when I was diagnosed with Fybromyalgia 2 years ago, I went on a FB thing for that and it was all doom and gloom. However this is a different situation. Fybromyalgia is chronic pain but with this there is a risk that it might be cancer! I know vulva cancer is rare and I noticed that most of my replies have breast cancer or waiting for results for breast cancer but any cancer diagnosis is scary.

Thanks for mentioning about the VIN group, maybe I might take a look.

Best wishes and hugs xxx

Hi Sally 

Well apart from walking like I'd got off a massive horse after the op and a week after I'm OK. Horse got smaller. Stitches are starting to heal but because of where it is it gets disturbed more as obviously when ya gotta go for a wee etc ya gotta go!! I brought lots of flannels and small hand towels so I'm not using the same ones each time after a wee!! Lol Tmi 

My Dr said she was referring me and when I saw the consultant he said he was marking urgent for my surgery, which was 12 days later. It's like I didn't have time to think!! Its 2 weeks this Monday since the operation but it feels so much longer than that. I did call the surgery and she said they were waiting for a letter and I should get one too. I am going to call tomorrow as my consultants letter went to an old address and when I called hospital number they said my appointment was at 2pm that day!!!. Anyway apologies for the waffle.

Fab user name ️ may you always sparkle xxxx

Would love to keep in touch. 

I'm sorry you were poorly after your operation. Did you have a General anesthetic?

Big hugs Nikki xxx

Hi , it all reminds me of when I had my son ... everything was torn off and had to be sewn back on ! I used a spiritual bottle to wash myself after a wee as it was so painful ! I feel for you !!! Must be awful ! glad the horse is getting smaller ! Def chase as you never know !! 
hope you get your letter soon !

a few of my friends call me sally sparkles as I love shiny things and I am always cheerful ( In public anyway ) 

take care and fingers crossed for u 

Hi Nikki 

yes I did , operation was hour and 45 mins ! Last time I had an op was when I was 16 ... tonsils out ! Was a heck of a shock ! Now 51! 
 Take care 

Sally x

Hi Sparkles 

It must have been a shock!! Bless you.

I had tonsils out at 4 and emergency operation at 7 for my appendix. Never thought I'd be having surgery for something like this and the same goes for you!! I was needle phobic but getting used to them now. 

I'll be 50 in August, when we are young 50 seems so old but when we get to this age you don't feel it!! Lol

Please let me know how you get on!! 

xxx

Hi Sallysparkles,

Welcome back to our forum. I am so sorry to hear that we scared you away at the beginning of your journey. I suspect that the person you reached out to just got embroiled in her own cancer journey for a while and, that this is why you lost touch. However, the good news is that she is still here. Many of us disappear from time to time, as treatment takes its toll on our bodies, but most of us reappear, so don't let this upset you. 

Sadly, we do lose some of our cyber friends along the way and, this is always traumatic and upsetting for the whole community. Unfortunately, this is all part of our life cycle and we have to cope with this in the same way as losing a family member. However, the benefit that we all get from this forum is immeasurable, as there is always someone who has first hand experience of what you are going through. If you haven't heard from someone for a while, don't be afraid to pop up a post just asking if they're ok.

I know that it is difficult to access courses at the moment, but Breast Cancer Care do an excellent course called 'Moving Forward' which you may find helpful - I'm not sure whether this is available online, but it is certainly worth asking. I also attended a Pain Management course locally. After it finished, we formed a self-help group, which has been a very positive move. We meet in one another's homes once a month and discuss various issues which we're having and, find that there's usually someone in the group who has already 'been there' and can offer suggestions about how to overcome these obstacles.

It is always difficult for family and friends to know what to say when you get a cancer diagnosis, especially if they have never encountered cancer close to hand before. I have found that a lot depends upon how I tell people about my diagnosis, as to how they respond. If you are all doom and gloom then they will naturally try to placate you by telling you that all will be fine. This can be infuriating when you know that it won't! If you are more positive and matter of fact about it, then people will be more positive too. You will always find it helpful to surround yourself by positive but realistic people.

This may mean that you have to be more selective with your friends, but you will find that some of these will  drift away anyway and, you will soon discover who your true friends are. It is exceptionally hard to cope with all of this on your own. It can be difficult to get your husband to open up about his feelings, but you may find that this helps you both in the long run. There are counsellors available to help you both if need be. Most of these services are free of charge.

In normal times there are also complementary therapies available for people with cancer and their families. These are again offered free of charge at various centres and include aromatherapy, Indian head massage, Reikki, reflexology and yoga. Places like Maggies or The Haven are nationwide, but there are more local services too.

You will find that your help and experience here will be invaluable to others who are starting out on their journeys, so feel free to jump in on any posts that you can contribute to.

I am glad to hear that you are getting towards the end of your treatment  and hope that the radiotherapy goes well.

Kind regards,

Jolamine xx