this site

4 minute read time.

This Site

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In my opinion this site was messed up the day the macmillan people changed the site from " share" and " what now " and in my view its never been the same..

so many people couldnt use this site and ended up with no place to go, so many threads and posts vanished never to be seen again...

no one even wanted the changes..infact everyone DID NOT want the changes only those that run this site didnt listen and didnt care a dam...  It sure was not something the members wanted thats for sure

many warned what would happen when the mac people turned this into a facebook style site and stuck a version of this site onto facebook.....

all the dam spam messeges we get bombed with and all the times we have asked something to be done about it and all we get is o something is getting done....BUT still i get these dam messages....its pointless reporting it because nothing ever gets done...

in my opinion , this site doesnt reflect the reality of having cancer....on here ever since the change over every other new member is terminal, diagnosed as terminal with weeks to live, or someone has just died...

but in reality the majority of people when diagnosed have a chance or recovery or  remission.....but not on here...

were have all the patients gone ? 

since the change over its become more of a carers site and if a patient gives his opinion he is stamped on by carers.....

someone said lifes not worth living......well i am a patient fighting to live.....as are others....maybe the problem is as i say when we log on we get a list of ALL the latest posts and we do NOT see that was posted in a coping with loss forum....blame the people who changed the site.....as i say we use to get a list of all the different forums come up and we could then go to the forum related to what we was looking for...

to be honest to me i think any new genuine patient just coming on here will just freak out and end up scared stupid if straight away the read a bad death thread.....that should be in a " death forum" and not on the main page....

coming on here its more like a bereavement forum and a death forum nowadays

try posting a posative thread and see how no one will use it......

i started the today i had a good day......only 2 people used it in 3 days....BUT hang on...the tv advert says it not all about cancer its about good days as well...only its not is it ...not on this site....

i remember there once was a big " jokes thread " on share.....its died a death....

there was a dance cancer away thread were people would share music....but its died a death as well...

think what you like but this site is not a shadow of what we once had...

why do you think so many people wont post on here anymore.....and so many have made there own pages on facebook and then invite people they trust to join them...so dont think its just me who is thinking the same things...

also......on the old sites we all trusted everyone on here.....i can only remember a couple of fakes on there...

but on here ???

half the time you dont know who us genuine and who is not.....again dont think its just me thinking the same......why do you think that on the old sites every new member got lots of replies.....now half the time new members dont get a reply or more then a couple of replies...

a message to the fakes.....we are not stupid...you might read stuff on the internet but your still easy to spot sooner or later...

course no one agrees with me but i think everyone should have to fill in a profile..and stop just putting   " iv got cancer"      "my friends got cancer and is dying"  " x had cancer for 4 years and died yesterday "    [ so why didnt you join during x"s 4 year fight but the minute x died you found the site and started posting about x and his / her horrible death ? ]  .....

are you trying to scare genuine patients ?

personally in my opinion thats just what some people are tying to do..

id like the profile to include....type of cancer.....type of treatment if know and even hospital of treatment or town people live in....

but i know no one wants that do they...

so i predict this site will get worse for scammers , spammers and fakes...

if you was on the old sites you will know what i mean ...

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so just like many others...i am on facebook.....and i wont bother with this site again apart from replying to my good friends who pm me...

its a shame...

it shouldnt be like this...

the blame is with those who messed the site up with there pointless changes that no one wanted...

my advice to all genuine people on here......just be carefull...and dont ever be afraid to ask anyone things like what hospital do you go to.....were do you live etc etc...

because the people who run this site sure arent going to do anything about making it more safe for genuine people...

and most important.....

no one has to agree with one thing i say....

it matters not....

im not a person who gets depressed...far from it...

but if this site is making me feel depressed then i doubt if i am the only one....

.....................

Anonymous
  • FormerMember
    FormerMember

    Hmmm, Rebecca - I don't think patronising a long-term cancer patient who has tried to recreate the lost and lamented collegiate atmosphere of this site is a very good idea.

    Could you report the points made by Damensis above to your management and give us a non-apparatchik reply?  We all have high hopes for Macmillan and don't want to accept it has degenerated into some kind of tedious Other Bureaucratic Department.

    Lots of money put into ante-natal care; apparently miniscule amounts into pre-death care.  Just a thought.

    Catriona

  • FormerMember
    FormerMember

    Hi Graeme, hope you have a change of mind, as you will be missed on here, yes you say it as it is but so much better than most, am sure someone has misread your post as I know you do not have a downer on carers you always sing their praises, and yes I agree its not right how the site is now, we see bits of all posts and do not go to place where help could be found, I to have noticed that sometimes it takes ages for people to get a reply, when on the old sites it was almost instant. It really was not money well spent on the change, and we are all here waiting for the apparant promises that mac keep making. Take care a wonderful Mr. Fine

    and keep up the fight as you have done so far....xx

  • FormerMember
    FormerMember

    Hi Graeme, I have been away for two weeks and I hear you are leaving the site, blimey mate at this rate I will e the only one on here. I hope you don't leave love but I can understand your reasons and can respect you for it , please stay in contact, all my closest friends are leaving this site. You know where I am love if you need me. Take care. Loads of love....Carol xx

  • FormerMember
    FormerMember

    I have to say I agree with you Catriona, Rebecca's reply was somewhat patronising towards a well liked and respected user of this site.

    Why don't admin address some of the issues mentioned instead of telling Graeme to consider where he posts his opinions more carefully in future.I think this is unacceptable. If his posts are made in the suggestions for improvements thread, are the rest of the users not to read them? I don't see others being asked to consider where they post their comments.

    You also suggest that we continue to report any concerns we have to admin. Well can I say that I have done so on a few occasions and have not had a reply. This is also the case with a few other people I know on here.

    Like Graeme I have never been able to understand why the site was changed in the first place. A lot of people who used this site (who obviously needed it or they wouldn't been there in the first place) have left because of all the confusion surrounding the site which is a real shame.

    It seems that if anyone who has a complaint regarding the site has to keep it to themselves on the say-so of admin or post it away so that others cannot read it!

    I really hope you will reconsider Graeme. You are a much needed voice of reason on here and will be sorely missed if you leave.

    Christine xx

  • FormerMember
    FormerMember

    Graeme I really hope you do not leave as I value your friendship.  I must admit though Graeme that I did feel a bit hurt, as a carer who has recently blogged about the loss of a loved one, as you know, and I did feel like you were saying I didn't belong here and shouldn't be blogging about my wee mum now that she has gone from being a positive story of miraculous remission into someone who has passed away from her terminal cancer.  I agree with a lot of what you say, particularly on the subject of spammers and fakes but this site has been a lifeline to meand I hope it will continue to be.  I would be devastated if I lost my friends on this site, you included, if I was banished to a site for carers.  My many friends on here who are patient have helped me so much over the past 12 months.  I really hope you stay Graeme, you offer such wonderful support to people on here and I, for one, will miss you.  Love Caroline XX