pagets disease of the vulva

l am looking to talk to anyone that has or is going through pagets disease of the vulva

  • Yes what a relief it is for sure ! I have to be at the hospital at 07.30 next Tuesday and apparently first on the list to be done ( but guess that could change) . The hospital I have to go to is just over an hour away , not my usual local hospital which is only 20 minutes away, so a very early start next Tuesday . 
     
    Oh it sounds a miserable day where you are today, I'll send some sunshine your way. That's a good idea to take each other when you need the garage , it's not great  walking on country road with no pavements .

    I love jigsaw puzzles , did quite a lot on the first lockdown, only do those with 500 pieces. 

    Yes have been wondering when we'll hear about becoming "friends ". !

    J x 

     

     

  • 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