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  

Hello Jacie how did you get in with doctors appointment? I hope he was a doctor you took to and confidence in. It makes such a difference

mine enjoyed a good joke. After my first operation he came to my bedside to say I could go home but there was some bad news - "I'm afraid no sex for 6 weeks"! I think that was the least of my concerns.  Another patient who he had operated on asked her "are you having sex?"  She was very quick and replied " if you're offering, I'm accepting". It does lighted the stress.

I hope to hear from you soon, best wishes Euni

Hi Euni

Its this Tuesday coming (19th January) that im going for my appointment. I'm feeling very apprehensive but at the same time glad to be going and especially pleased to get an appointment quite quickly with the Covid situation.

I hope I get a good doctor like you did in the end, it makes all the difference if you have confidence in them. Yours sounds like he has a great sense of humour and its always good to have a laugh about things.

I will definitely be in touch next week to tell you how it goes.

Thanks for your support.

Best Wishes Jacie.

Good evening, it's dark already and I'm having a cuppa and piece of Christmas cake before face timing a friend at 6pm with something a bit stronger. I limit myself to Friday,Saturday and Sunday for alcoholic drinks and it so much more fun if it's with someone else, quite a highlight when one lives alone AND there's COVID about. Fortunately I live on the coast so half my world is sea and safe except visitors do like to come to the town, but our infection rate has dropped dramatically in the last week.

immunisation starts this weekend and I'm going along as a volunteer to help at the health centre - 6 hr shift!

I totally agree, once you know you hsve to hsve treatment , you just want to get on with it, face up to it,get over it and get in with living. I hope yours is all caught first time but it's a fine line between removing enough with a clear surround and not too much. Mine did say to me that several small ops are better than one large one because you heal quicker and scar tissue is less

good luck Euni 

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 

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 

Hi Euni!

I'm so sorry for my long silence! I havent received any of your messages and just thought to check to see how you were doing and have seen that we have become a trio!

I have you been? I'm coming to the last few weeks of my cream treatment - it's been a long hard slog hoping I shall begin to feel more like myself once I stop.

I won't see my consultant until the end of June.  I think he'll only be taking a single biopsy and not doing the mapping he didn't seem too certain.... I wish he was more like your lovely consultant. He could definately use some trainig on his interpersonal skills! Thankfully if I have concerns I have to go through my nurse has the joy of dealing with him. ;  )

I skimmed some of the previous messages I'm so glad your recent check up was all clear!

Your lovely walks along the seafront sound lovely.  I'm looking forward to being able to exercise and do more things with the kids again I feel so guilty at not being able to do things and be with them more but hopefully the summer is upon us (once the rain stops - Have you had lots of rain with you too? It seems endless in London) I'll be able to enjoy it.

Hope to hear from you soon.  I will check here rather than wait for an update (I've learnt from my lesson now!  :  )

Shars x

Hello stranger, wonderful to hear from, not since way before Christmas 

we are not 3 but 4 and I can now  talk privately with them, Jackie has iPhone/pad so we FaceTime but Skype is possible as well  they both have procedures coming up so will need all the support we can give them

im surprised my messages did not get through to you, and I began to think the worst with Covid around. But hey your kicking life and we are again in communication 

woild you like to set up the talking privately part, not worry if not, but if yes I will start the ball rolling. Just to warn you  It's not always straight forward 

very best wishes Euni 

Hi Euni,

Yes that would be great! Let me know if I need to do anything.

I was alerted to the message you've just sent but not the previous ones.  I only thought to check as i remember this happened previously and low and behold there were lots of messages and your messages with one of the other ladies.

It's nice that we've all found a way to connect and support each other.  I hope their procedures are successful. 

I have an iphone/ipad too if that makes it easier.

Shars x

Hi Shars. Where are you? You have disappeared again I hope you are getting the notifications to let you know I am trying to contact you. I have sent a private message with my contact details. I'm having great chats person to person with Jacki

xEuni

Hi Euni!

I've not been getting any alerts! I got this one as i think you replied to my message. I've just sent you a message!

Look forward to hearing from you soon

Shars x

I have replied as a private message! XE