Well first, thank to you and to your organisation providing such a great facility to those suffering with Cancer. The effect of finding genuine information, help with benefits, guides and even legal matters cannot be over estimated in what can be the lowest point in someone’s life, being told you or a loved one has cancer. Your organisation maybe the turning point for many, we find out that Cancer is not an immediate certain death sentence, that with treatment many will and do survive.
Maybe one of the most important aspects of the Organisation is the On-Line Community. Well its one of the most to those that use it, to call it a life line is not an exaggeration. I understand this may sound odd to you, it’s where we gathered to meet. When I say we I mean a community of patients, ex-patients, carers, ex-carers, friends and relatives, the common factor being - we are or have suffered with Cancer its where we picked the brains of those who are further on the journey than us. We learn from their first hand experience about treatment, side effects, ways to avoid or reduce the side effects, different drug trials and this will kill you, sorry no pun intended - we have a good chat, we laugh and we live our lives a day at a time.
The other major point is we can 'Talk' to others who fully understand, we can be as open and honest as we want and say things that we could not say to our friends and family without hurting them, we can even talk of our fears. We get to mourn the passing of friends, we get to celebrate the victories of those in remission or best of all - Those given the all clear, there is no jealousy or envy, just a great feeling that one of 'The Family' beat the beast.
I understand this may sound like we are group of sad losers but I assure you that is not the case, we come together in a community where colour, race, religion and beliefs are just not important, what is important is that we support others as best we can at a time in our lives when we do need support. We take support when we need it and we give it when we can, a true sharing in every sense of the word.
OK at times it can be a bit soul destroying, we do loose friends, it’s the nature of the illness, we know we won't all make it, but when you live a day at a time and enjoy that day then you also can't have too many regrets about yesterday. One of the worst aspects of this Cancer is not that some us will die, it’s the fear and concern for those we will leave behind. This is where The Mac Family comes into its own, they offer help, support and even love and a sense of belonging to those who survive us who otherwise would find it hard to talk to others who did not understand, the importance of this cannot be exaggerated.
Sorry for going on but do need you to realise just what the on-Line Community means to many of us. I do understand you are busy so will get to the point of the letter.
A 'New and Improved' version of the software was introduced last week, well more imposed, It was certainly new and featured Mac Green everywhere, to be honest it does look flash and modern, just one problem, it does not work and in its present form is unfit for purpose. It was imposed without being trialed to any real extent by members, we are then informed it’s slow because the site was not expecting so many to sign in, I would of thought was one of the most fundermental questions to be established when designing a site.
It has ripped the heart and backbone out of the community, it was slow and kept timing out, you could no longer see what your friends were doing or what they had posted. In fairness the two point of contact we have on the admin team, Laura and James, have tried to move heaven and earth for us and are steadily solving some of the more major problems, they have solved the speed problem to a great extent and think they have a fix so we can see our friends activities. The have both worked hard on our behalf, but the menu system is confusing to say the least, people are trying to post comments and these just disappear into cyber space never to be seen again.
I am not naive enough to think someone will stand up and say sorry guys - I got it wrong and you can have the old site back, even though that’s what the majority want - but then how does anyone justify the time and donations squandered on this fiasco.
What I would like is the person responsible to stand up and to talk to us and understand the pain and suffering they imposed, by their negligence, and not using that word lightly, on those who have enough to contend with anyway.
Sorry but maybe as you can tell I feel very angry about this, this appears to be a repeat of a similar saga 2 years ago and some of the 'fixes' where never implemented, come on Mac - don't let us down again please
Thank You for sparing the time to read this.
Tim
