Re Facebook page

[christina]

Hi unfortunately I had to make a decision to leave the MDS Facebook group where over the years have made good friends and found a lot of useful information however just recently there have been so many sad stories and some very personal stories that have effected me as although I'm trying very hard to stay positive I know in the near future this could be me,and it's very hard to cope with along with all the other problems going on. I'm very aware that it's therapeutic to talk and most of the time I've been able to handle it, but I suppose because I'm battling myself at the moment don't want to see sad stories about treatment and death when I'm trying to stay positive. I haven't been brave enough to leave a message on Facebook as I know there will be a few people who won't understand my feelings, so pleased that I still have this site to keep in touch and find out information. I know I will miss them all but feel very relieved to have made the decision, best wishes to everyone Christina (Tina)

[AWOX15]

Tina, so sorry to read your message. Some people pour their hearts out more than others, me included. I’ve always wanted more information on this website and I have mentioned it to Sophie, but many people find Facebook easier to use being more socially friendly.
I’ve always wanted more information from patients on aza, but besides Anthony and a few others, there are few who contribute, for one reason or another to either website.
MDS is so personal that it is impossible to judge the outcome in general terms.
It’s difficult knowing what to say when we all have this uncertain future and I can empathise with your feelings.

[christina]

Thank you for your kind words, I know some people have to share so much with others and I'm sure it must help them, but I can't read about loss even though I have experienced it many times and I can't deal with hospice details as again I'm aware of the whole thing
I have always tried to stay positive and I think that's what has got me through the last 9 years and even though my condition has changed I still want to keep fighting and not be reminded of what may lay ahead. I belong to a Cancer United Choir and we are all there for each other but rarely talk about our health even though its often obvious what others are going through, we sing, we laugh but most of all we are thankful for being there, we now have lots of bookings especially around Christmas, for me it is the only way I can with the support of a wonderful family meet each day, I don't want to waste a day thinking about my health even though the days are often planned around my chemo. I'm so relieved that I still have this site to get all my information and thank you for your reply Christina