pagets disease of the vulva

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

  • Hi Euni

    Well I've been for my first appointment this morning , when i went in to see the consultant/gynaecologist she said she wasn't the person I should have been sent to as it wasn't her speciality, I should have been referred to a gynae/oncologist . Anyway she did take some notes and examine me and said she would have a word with the correct consultant tomorrow ..... so not a great start ! 

    Hope all is well with you.  That's great that you are volunteering to help out with the covid immunisations, the sooner everyone is vaccinated the sooner we'll all hopefully get back to some normality.

    It must be really lovely living by the sea. We live on the Worcestershire/Herefordshire border so a fairly rural area with nice counrtyside.

    Best wishes Jacie 

  • So sorry Jacie that you did not get to see the right person,   All that anticipation and build up   What was someone thinking of. I hope it not another long wait

     I did not have to do my vaccine stint yesterday as it had not arrived last week as anticipated, but due yesterday. I'm still wary that I shall be among more people than usual and surprised they won't vaccinate me ahead as I'm working with them. I'm in the over 70s group - well into it! And nearly another year older but getting older is good as the alternative is not!!

    I live in Suffolk a wonderful place to live although the North Sea can be cold and dangerous. I used to go in it happily as a child but not now! It has to be warm, clear, blue and preferably with tropical fish and a cocktail awaiting me when I come out! We do have drinks by the sea I must admit as we are fortunate and have a beach hut

    keep me up to date. All the best Euni 

  • Hopefully I won't have to wait too long, the person I saw today said she would ring me tomorrow., I'll let you know . 
     

    I do hope you get your vaccine soon especially as you are helping out and mixing with more people. 
     

    Roll on the summer and you can enjoy drinks in your beach hut .    Jacie x

     

     

  • Good afternoon Euni

    I'm just back from my daily walk, it's been a nice sunny day here although a little chilly . 
     

    I had a call from the consultant I saw on Tuesday to say she had passed on my details etc to the right person!. She said it would now go to a Multi Disiplinary Team to be discussed as to what action to take. I did say that I would like an appointment to speak with someone from the team preferably the gynae/oncologist (who I was supposed to see)  before they go any further. She said she would ring me again next week with an update ., so will await to see what she has to say . 

    Enjoy your Friday evening drink , we always have a bottle of wine on a Friday and sometimes at the weekend too ha ha ! 
     
    Best wishes Jacie 

     

  • Good afternoon Euni

    (As you can see below this message now appears twice !! I stupidly clicked reply to my previous post and it came back to me ha ha !!)

    I'm just back from my daily walk, it's been a nice sunny day here although a little chilly . 
     

    I had a call from the consultant I saw on Tuesday to say she had passed on my details etc to the right person!. She said it would now go to a Multi Disiplinary Team to be discussed as to what action to take. I did say that I would like an appointment to speak with someone from the team preferably the gynae/oncologist (who I was supposed to see)  before they go any further. She said she would ring me again next week with an update ., so will await to see what she has to say . 

    Enjoy your Friday evening drink , we always have a bottle of wine on a Friday and sometimes at the weekend too ha ha ! 
     
    Best wishes Jacie 

  • Hello again, things are moving. I had a multi disciplinary team after the 3 ops. I think being so rare a condition it's a good idea they do that.

    I had a wonderful walk today too, about 2 miles on a different route. They have shut all public loos (first time I've known them do that here as it a busy tourist town normally) and with no pubs or hotels open either it limits the distance I can go. I did another walk yesterday  with my travelling lady friend, all over footpaths in the country, lovely to be among trees again ( seas not bad either, but huge seas the last few days)

    yes drinkies tonight and I've got FaceTime friends for Fridays sats and Sundays.  During the week it's a cuppa   Living in my own I look forward to these. Normally we would meet up of course.

    ive made similar mistakes and now receive double emails! 

    cheers, our good health snd keep chatting Euni 

  • Hi Shars, how are you? Long time no chats and Christmas well and truly gone. How is the treatment progressing, has the 6 months gone by yet.

    hope to hear from you soon.  Perhaps you have lost your passwords again

    x Euni 

  • Enjoy your drinks and FaceTime friends this weekend . 
     

    Glad you enjoyed your walk today albeit no loos !!
     

    I'll let you know if I hear anything next week . 
    Jacie x

  • Hi Euni

    How are things with you this week?

    We had snow here last weekend but its been quite mild since. Unfortunately I haven't been able to go for my daily walks this week as i've been suffering from a bad back ... very frustrating! I dont know what caused it but I guess these things just happen.

    I had another call from the hospital this week  to say I would be contacted shortly for an appointment to go and see someone, so I may hear something next week.

    Enjoy your Friday evening drinks. Jacie x

     

  • Hello again, I shall be getting a bad name with Friday-Sunday FaceTime drinks. This morning it was a FaceTime coffee.

    Sorry to hear about your back, having had a disk partially removed I know just how painful and debilitating that can be, and you never know how long it will take to get back to normal again.

    Good news for another appointment as you feel things are progressing. I had a letter to make an app for the vaccine, 10 miles away when my surgery is 1 mike away. I had no sooner made a date for February 9th than I received a phone call from the surgery and I go tomorrow. I have a holiday planned with a travelling friend but she is 69 in March so a group below me and we both have to have had the 2nd jab plus at least 2 weeks. I shall plea for her to jump the queue. We have had at 5 holidays cancelled in 3 years and I have an my big one cancelled as well (I should be in Burma at the moment)

    My big news is that 2 days ago I wore proper trousers for the first time in 2 years! Not too bad but shall take it very slowly. The bad news is that I have put on fat round my waist.  Not good news. I suspect for the last 2 years I have spent more time than usual sitting and not being able to do my normal walks. The trouble is as one ages that fat is the hardest to get rid of.

    keep me informed  best wishes Euni