I have been diagnosed with this rare disease, at present precancerous and will see surgeon in 2 weeks 

There is little info on line except from USA which I understand is differently treated to UK

how are you and where are you at in your treatment. Best wishes Euni

Hi wonderful to hear from someone else. I had some skin removed in April which prioved to have just 2 cells that were cancerous. Mine was towards the front and one side only which is an easier area to do as there is spare skin. I had to keep the area well ventilated ! So no pants and loose skirts, but it was summer time so no problem and in fact I quite liked it. I healed quickly but in September an adjectival area didn't feel right so I had that done and it was a much smaller area and proved to be clear of cancer. I am now awaiting another one at the end of April. Each op is smaller than the last and I get over it quicker. However normal trousers are out as they are too tight and I alternate between skirts and tights and track bottom or leggings. A whole new winter wardrobe. The ops are now totally healed and feel just like they should, not painful and not aware of them

in the UK it seems surgical mainly to remove the skin before it become cancerous. In America they seem to go straight for the cream.  How old are you? I will be 76 next week

keep in tough and let me know how you get on.  I have told so many people and all the ladies have been pleased to know about it and to watch out for themselves .  One is being investigated for it soon  

Hi Jacie and [@Euni]‍, 

If you've managed to find each other via your friends list on your profile and sent a request to each other, all you need to do is accept the request and you'll be able to start messaging each other :)

I know Mod Lucie shared the link that explains how to add friends already, but I'll just include it here as well if you need a reminder on what to do.

Kind regards,

Steph, Cancer Chat Moderator

It really sounds as if we do have a lot in common (as well as our medical bits) which is great. Who knows when you come to The East you might travel a bit further and bring your friends for a day out X E 

Hi Euni

It's another lovely afternoon here,  all my washing is drying outside in the sunshine . 
Hooe you are well and you also have some spring sunshine on the coast . 
I'm just sorting a bag to take with me for my op tomorrow, feeling very nervous especially about the general anaesthetic , silly really as I have had it before ... and survived ha ha !
Just hoping this op will be the only one I need , it's only a small patch of skin so hoping it will all be removed successfully and it won't return .  I know there is a high recurrence rate but fingers crossed . 
 I'll let you know how I get on.! 
Best Wishes J x

Shall be thinking of you and wishing a one time op only.

it's a positive action that's going to be done, positive thoughts really do aid healing 

I always walked into the anti operation room, got on the trolly, they then got me well down to the end as obviously the end is easier for the surgeon to get up close and personal. Just don't think about that bit!! Remember they have chosen gynae as their speciality!! When they enject into you I love that bit when you feel it taking effect - like a triple gin. Next it all done and your coming round. That's not good for me as my temperature and blood pressure are always very low so I feel unbelievably cold, even with a heated cover over me. They take a long time to get my temperature and pressure up before wheeling me in. That first hot cuppa is nectar. 
do let me know when your safe. 
haven't heard anymore about the "friends" bit, have you?

x Euni

Thanks Euni for all your support ... yes positive thinking . 
Ha ha , will try not to over think the up close and personal bit !! 
Yes will let you know how it all goes. 
I haven't heard any more about the "friends " bit . I've clicked you in as my friend but  I'll look into it again later this week , I'll have plenty of time after my op . 
J x

I think I mentioned by surgeon was very keen on 3 showers a day underneath. Not just for hygiene but because it washed away dead skin etc. To be honest it was a bit of a faff just before bed time, but I felt better and cleaner afterwards. If yours doesn't mention it you might like to ask, or just do it. Absolutely against sitting I salt solution! Ouch!
did you read what I had mentioned to Shars about drying underneath? I used an old handkerchief of my husbands folded into a long piece and just held it underneath to absorb any water. It might help you too

I tried to send you a fingers crossed picture but it won't do it. Just think it

all the very best Euni

Thanks for that advice , sure it will be very helpful. 
J xx

Well I feel sure you must have been done by now. Hope all went well, been thinking of you several times, and remembering my first time

best wishes Euni

Hi Euni , Not long got home and I survived !!
It all went well thanks , just SO glad it's over. 
Feeling sore but not too painful . Have also got a sore throat from the tube they put down for breathing .

They did say to shower area three times a day as you recommended. I have no dressing just a large pad as it's still bleeding a bit at the moment . 
I haven't looked at '' the damage " yet will leave that until tomorrow ha ha ! ! 
Hoping the biopsy  comes back with clear margins, but won't worry about that today , will be a few weeks until I hear about  it. 
Everyone was lovely and I was very well looked after , very thankful for our NHS. 
Thank you for thinking of me. J xx

Hi good news you're home safe and sound

dont look for several days would be my advice. As you know with any operation it always looks worse at first, and bleeding is normal. If you wear a little pad the stitches can get caught on it! Hope you managed to get some skirts? Mine were done when it was warm enough around June, then that September then again in April, finally radiotherapy in July 

we won't go down that path as you may not have to have any more ops. I don't know what the stats are on more ops - more or less likely. It's such a rare disease 

I didn't find urinating painful which I was prepared for, but keep well hydrated so that the urine is not strong. It's all a learning curve and different for each one of us

sleep well and I hope your husband will wait on you! Bringing trays of temptation

thanks for letting me know so quickly. Sleep well tonight x Euni 

Hi good news you're home safe and sound

dont look for several days would be my advice. As you know with any operation it always looks worse at first, and bleeding is normal. If you wear a little pad the stitches can get caught on it! Hope you managed to get some skirts? Mine were done when it was warm enough around June, then that September then again in April, finally radiotherapy in July 

we won't go down that path as you may not have to have any more ops. I don't know what the stats are on more ops - more or less likely. It's such a rare disease 

I didn't find urinating painful which I was prepared for, but keep well hydrated so that the urine is not strong. It's all a learning curve and different for each one of us

sleep well and I hope your husband will wait on you! Bringing trays of temptation

thanks for letting me know so quickly. Sleep well tonight x Euni 

Thanks Euni , yes I'll sleep well tonight and will be very well waited on. 
I did think of you a lot today too, it really helped knowing what to expect with my op as  you have had the same experience . 
Haven't got a skirt , I might have bought one if the charity shops had been open but since I've got home I'm wearing a pair of saggy old jogging bottoms with a very low crotch which seem ok at the moment ..... such a good look ha ha! 
Have found urinating a bit difficult today , have been drinking plenty of water and want to go but just feel hesitant to do so , as you say it's all a learning curve. 
Will keep you informed of how it's all going . 
J xx

Good Morning Euni, hope all is well with you. 

Well it's Friday again and the days are passing by since my op.

Its been super sore especially the stitches  around my bottom ! I've also got terrible constipation, i've got some laxatives but i think the hesitancy of breaking the stitches in that area doesnt help.

I was very suprised at the amount of bruising and swelling  although looking at it today it seems to be on the mend. Marvellous how your body heals so quickly. I've been showering the area at least 3 times a day so that helps.

I'm getting on ok with my very baggy trousers ! 

Thinking how brave you have been to have this done three times plus the radiotherapy. 

Looking forward to some brighter days ahead when I can get back on my walks . We'll have lighter evenings too next week which is always lovely.

Best wishes J x

Good afternoon Jacie now and I've been for a very blowy walk on the marshes and finished up on the sea front where all the beach huts are 

Bravery doesn't come into it, it has to be done. The last one was the worst as it involved my clitoris( more nerve endings there than anywhere else in the body). I've now got half a one! And I'm zipped up the front,,  the mind boggles  how does a surgeon manage that, but we both discussed it before hand  I literally had to put myself in his hands ha ha

for about 10 days after the op it feels as if your stitches are tightening. In fact its body pulling the two cut edges together to mend themselves.   My cure for constipation is conference pears! I've told friends and they say the same .
 It's  about time our request to be "friends" was completed. Perhaps we should both contact them and see if we can get it completed. I will do it straight away 

happy healing

Euni

Hello [@Euni]‍ and [@jacie]‍ 

I read your post ladies and can see that you're trying to connect so that you can private message. 

We've some "how to" guides here about requesting a friend and here about accepting a friend request.

Hopefully, this will help the two of you to connect so you can chat. 

Best wishes, 
Jenn
Cancer Chat moderator  

Thank you for replying. I'm the one who made the request. My would be friend Jacie did hear back but nothing then happened.  You can see we are getting along very well and now she has had an operation, I feel personal support is so important

would be so grateful if you come finalaise the "friendship"

best wishes Euni

Hello Euni. 

Unfortunately, the Moderator team has no access to approve private messaging between 2 members. Can I suggest that Jacie requests to add you as a friend so that you can then accept. 

If you try this and it doesn't work please do let us know so that we can see if there are any technical gremlins that need looking at. 

Best wishes, 
Jenn
Cancer Chat moderator 

Ok Jacie. We may have the solution to our "friendship" 

you have to request me to be your friend too 

off you go, get typing

xxE

Hi Euni , will do , I'll see what I can do right now . J x

That's my girl!!

I've requested you as a friend and also replied to your 'test' message J x