Hello all, my dear invisible friends. Friends with whom I can open up and talk freely, without any pretence. Thank you for being there for me during my worse desperate times. You are like sunshine on a rainy day, you are the invisible smile, the understanding compassionate eyes, the silent tears, the strong hug that gives strength and hope.
I would like to say THANK YOU once more. To wish you all a happy Christmas and hope for the New Year. Sending lots of love and a virtual hug to you all.
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Hi @oleconchi all I can do is to echo your words, so beautifully put, to all my invisible friends and of course you @oleconchi. thanks so much.
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This is so lovely and puts in to words how I feel about my forum family. Just beautiful @oleconchi. Wishing you a very happy Christmas! X
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HappyChristmas all you beautiful people.
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Merry Christmas to all the beautiful and strong people here.
Be kind to others, be even kinder to yourselves and let’s enter 2023 with max positivity and belief we can beat anything that tries to put us down 
Lots of love and best wishes possible for all of us 
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Oh @oleconchi, that brought tears to my eyes! The people here are amazing, aren’t they?
Wishing you a wonderful Christmas too. Here’s a big hug and a kiss right back at you! ( ) X
And Happy Christmas to everyone here. X X
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Christmas Blessings to you all
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And also to you @oleconchi
I agree this forum is an amazing place for support ,a friendly chat ,sharing idea’s ,asking questions.
Wishing everyone an amazing festive period and hope that the new year is filled with health and happiness.
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To echo @oleconchi :A merry christmas and Happy Christmas to all forum members and volunteers.
Just heard that my daughter has tested negative for Covid, so I might see afterall. What Great News!
Helen
Helen
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Dont EVER feel bad about coming on here telling us how you feel
I do hope your itching tornent gets sorted…i had it on my legs for a year…drove me mad.
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Hi All.
Just finished my second round of Azacitidine today. Time to relax and enjoy the festive period. Merry chrisymad to you all and all the very best for 2023. X
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Hello Leefer.
I wish I could say that my “torment” is over. The truth is that it is getting a lot worse. It comes to torment me everyday, it lasts several hours. I have got it today, since I woke up this morning…I have reached the end of my tether.
This morning I tried to reach my nurse and in desperation a sent a text to the secretary of my consutant (it is impossible to reach her directly!).
All to no avail.
Here is what a said in the email to the consultants’ secretary:
Dear Joanne,
I am writing to you because I am desperate.
My symptoms (stinging and burning) are getting worse. I get them every day, all day and night. I am in constant agony. I have been suffering for well over a year. There is no rest or let up. I am considering ways in which I can end my life, because I don’t have a life. This is a slow agony and a torment. I have taken all kinds of antihestamines, my daily aspirin and my oral chemo. I also tried 11 sessions of phototherapy, to no avail.
There must be something that I can be given or advise to try…I am at my wits end, because I can see no end and I have no hope.
When I get these agonising attacks, , which come practically every day, I howl like an animal. I think that it is affecting my mental health. I honestly think that I am going mad.
I am begging you for help, please, Thank you
Sorry for the long message.
Thank you for your support. I don’t know what I would do without all of you wonderful people in this forum. x
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I got an automatic reply. They are on annual leave until the 11 January.
As I am not an emergency…not having a heart attack or a stroke, I just have to suffer and wait. 
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Hi @oleconchi. I can see from reading your post - and in your email to your team - how desperate you are feeling. I can’t imagine how difficult it must be and you have a long wait until you can talk to a member of your medical team.
Please remember that the support line is open on the 27th if you need to talk things through. Would you consider calling any other support lines? Obviously I am worried about the thoughts you are having - it must be extremely difficult feeling that low.
Please keep posting so we know how you are doing X
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Hi @oleconchi , i totally agree with you, this has become my sanctuary where i can speak freely and share my feelings without upsetting family. You have all become my invisible friends too. This will be our first christmas with this diagnosis and we are making new traditions involving more of the family. May you all have a very happy christmas and i hope you all stay well over this festive period. X
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Hello there, absolutely no words of wisdom or anything advice related but i could not just go past this. I offer a hand of friendship and a listening ear here - lets get you safely to jan 11, together. Do remember the support line is open on the 27th again and The Samaritans are 24/7 365 days a year. If only to give you some space, some compassion and whatever time you need. You really matter. Sending you strength to endure the next hr, day, night
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Oh @oleconchi I know that words are useless but just to reiterate what others have said and I just cannot imagine what it is like for you.
We are all very special people on our forum and share this unique bond and care about each other as no others can.
Perhaps just take it a minute, hour or day at a time and know that we all here for you especially over the festive period.
@judesadventures has mentioned the Samaritans their number is 116 123.
So many virtual hugs for you and keep them in your pocket for when they are needed.
Please keep posting how it is for you.
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words cannot express my gratitude to all of you who offered support and compassion.
thank you for reading my message and replying and giving me hope and courage.
I have spoken to the Samaritans before when I was very desperate but I always think that my suffering is minor compared to other people, such as homeless or without families. …
I will call the support group on Tuesday. I have spoken with them several times and they are quite wonderful, empathetic and supportive.
I wish you all a merry Christmas. Sending lots of love and best wishes
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@oleconchi the Samaritans are there for everyone and your suffering is certainly not minor or any less than anyone else’s.
Sending you much love back xx
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