Hi Laura and James,
I do understand you are working hard to resolve our issues, and at this stage not getting a lot of thanks from us the members. I say understand not saying I am sorry !! - you are the only visible faces we can post to.
While I understand your efforts, with long days and sleepless nights I have far less concerns about that than the fact someone who may of just received a diagnosis of cancer has turned to the site and instead of being welcomed, reassured and pointed in the direction where they can seek help, support and feedback from others who understand their Cancer, treatment and fears have been left to flounder alone and lost.
I keep hearing things about the new improved site, OK a couple of definitions, if it’s new - it’s new - not improved!! If it’s improved, great but then it’s not new!! Mac can not have it both ways; the sad thing is it is neither. It is Flashy and is a tribute to the Internet coding for appearance. It is also slow and clunky and totally unusable at the speed it is working. But speed is only one aspect of why we find it difficult if not impossible to use.
Recently Admin put forward a blog asking for 'Community Champions' along with 14 other people I offered to take up this role. I did not do it for the title or kudos, there was none. So why take on this role, well along with the others I wanted to make sure than no blog went unanswered, even if not having the relevant knowledge I would be able to point them to the information or groups who did and just to let them know someone was listening and actually understood.
The reason I offered was to repay some of the help, confidence and even love I was offered when I was at my lowest ebb. I had been in a dark lonely place after being told my cancer was inoperable but by giving up several male characteristics and abilities my life could be extended by some years, some choice huh ?? This was an important point in my life. The confidence and hope I was given by this site and friends I made on Chat gave me a hope and a will to review what was important and I went for the life option.
So maybe from personal experience I can say this site can be a matter of life or death at times in a cancer patients life and I am just not sure how anyone associated with this charity, in any sort of control role can take the risk of turning their backs on even one person at the most venerable time in their lives.
The New Site is Flashy but unworkable, it should never have been implemented without a large scale user trial. The time to correct the problems was before not after change over We were asked what we wanted before the site was introduce and these need have been ignored.
One of the most fundament aspects of the previous Mac Site was the Community Spirit, Mutual Support, a Family of Members looking out for each other, offering a Social network, wanting and needing to know about others tests and results, symptoms and sadly even losses of Family Members.
I am not even going to discuss the fiasco that passes for a chat room, total rubbish and just not fit for purpose !!
Simple but fundament question, If one of my friends looses a partner, parent, child or relative will I even know or get a chance to convey my feeling, condolences or emotions ?
I do not want the earth honest, I want a home page to see how and what my friends are doing, I want a chat room that works and I want to be able to post to new members welcoming them to the site, confident that my post will appear. I also want a site that works in a constant, speedy manner.
I am not going to apologise if this seems a sad angry blog with me ranting and spitting my dummy - that’s because I am all of those things and a lot more too but unfair to load all my feeling onto the two admin people who I understand are working hard but to them it must seem like nailing jelly to the ceiling !! Thanks for Your efforts but its not enough Laura and James.
Lost Totally Pi **ed Off and Disillusioned
Regards
John
