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  

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

Glad to hear you have your vaccine appointment tomorrow . I do hope your holiday friend can get her vaccines sorted in time too . How disappointing about your trip to Burma. 
We love to travel and have a holiday to Skiathos this September that was postponed from last year. We love the Greek Islands so might even get another week somewhere before then all being well .  
That's great news that you are finally back in proper trousers. 
Have a good weekend x

 

Good morning Jacie I'm presuming you have had no appointment yet? I have one on March 10th (my youngest daughters BD - 51!) 

it's bitterly cold here today as we have a gale force wind blowing which makes it feel like -4 according to the BBC app. But within 4 hours of putting sheets and towels out it's all dry and put away,  "it's an ill wind ...etc"

best wishes and thinking of Greek islands, sun, Greek music and ouzo.
Greek music played a big  role in my married life, more the traditional type than you would probably hear today - I played a piece to my husband entry into the crem 

Hi Euni

Sorry for the late reply , I've only just looked at my emails. 

I had a letter yesterday for an appointment next Tuesday 23rd , so let's hope I get to see the right person this time and finally start to get sorted ! 
 
It's been a really cold week here too. Will be glad if it's a bit milder this week . Unfortunately I'm still not back on my daily walks as my bad back is still not 100%, it's getting better but taking its time!  
 
Yes definitely looking forward to better times ahead this year and hopefully travel to the Greek islands, love an ouzo or two with some Greek music.
Let's hope with the success of the vaccine roll out  we are all able to get back to some normality ... fingers crossed.  
Hope you get to see your daughter for her birthday too x

Best wishes and I'll let you know how I get on at my appointment . 
Jacie x 

Hi Euni

Sorry for the late reply , I've only just looked at my emails. 

I had a letter yesterday for an appointment next Tuesday 23rd , so let's hope I get to see the right person this time and finally start to get sorted ! 
 
It's been a really cold week here too. Will be glad if it's a bit milder this week . Unfortunately I'm still not back on my daily walks as my bad back is still not 100%, it's getting better but taking its time!  
 
Yes definitely looking forward to better times ahead this year and hopefully travel to the Greek islands, love an ouzo or two with some Greek music.
Let's hope with the success of the vaccine roll out  we are all able to get back to some normality ... fingers crossed.  
Hope you get to see your daughter for her birthday too x

Best wishes and I'll let you know how I get on at my appointment . 
Jacie x