this site

4 minute read time.

FormerMember

17 Oct 2010

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....

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FormerMember over 14 years ago

Hello Graeme,

I will attempt to address the issues in this blog post.

Firstly, this site is for everyone affected by cancer, not just patients. Carers, friends, family members, employers, anyone affected in any way by cancer is welcome to use this site and is entitled to the same level of support. This support may be delivered in different ways and by different groups of people, but it is essential that it is available to everyone.

The stated aim of Macmillan Cancer Support is:

"Our primary goal is to reach and improve the lives of everyone living with cancer."

This can not and should not be limited to the person who receives the diagnosis.

There are groups which are exclusively for carers, just as there are groups which are for patients, fundraisers, campaigners etc. I recommend that you limit your access to the area which best suits your needs.

I personally think that one of the strengths of the site is that all of the groups are able to mix easily with one another. This helps to foster understanding and demystify many of the difficult to talk about areas of the cancer journey.

I would like to point out that whilst I agree to an extent that seeing posts and blogs about death may scare new members, seeing posts about how useless the site is will equally put them off posting, perhaps when they need us most. I therefore ask you to consider where you post your comments more carefully in future. If you would like to comment on the site, the staff, the content or the organisation as a whole then please use the 'Suggestions for Improvements' thread or contact a member of the admin team.

community.macmillan.org.uk/.../270439.aspx

As I've stated several times before, we are addressing the issues with the site navigation. We understand that it is not ideal and we do not make any claims that it is. We again ask for your patience and understanding in this matter. Things simply cannot happen overnight.

The matter with the spammers has also been addressed several times, both by myself and by my colleagues. We are changing the sign up process to limit the numbers of spammers who can slip through. Again though, this will take time, and we again thank you for your patience.

In the meantime, there is absolutely a point in reporting them, and anyone else who you are suspicious of to me, or another member of the admin team. We always remove these offenders as quickly as possible, and I therefore urge you to continue to report them.

I also recommend strongly that you do not give out personal information online. This can lead to your security being jeopardised. As you wouldn't give a total stranger your NHS records or home address, do not do so on the internet. I cannot stress this urgently enough.

Online, as in life there are always going to be people who are less scrupulous than others and who are out to damage or deceive others. Exercise caution and follow our Community Guidelines. If in doubt, report and ignore.

Thank you once again for your continuing patience and understanding.
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FormerMember over 14 years ago

I never saw the old site so I can't comment on it. I was pleased to find this site and it has helped me a lot. I would be disappointed if people were leaving it for facebook or other blogs etc even though I do have another blog myself.

I agree that the blogs/forums are difficult to navigate and it could be improved.

Steve
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FormerMember over 14 years ago

I never saw the old site so I can't comment on it. I was pleased to find this site and it has helped me a lot. I would be disappointed if people were leaving it for facebook or other blogs etc even though I do have another blog myself.

I agree that the blogs/forums are difficult to navigate and it could be improved.

Steve
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FormerMember over 14 years ago

IF the people who run this site were only concerned with the members you lot would NEVER have booted off the share site and the what now site .

i seem to remember none of the members wanted the changes...and everyone wanted the site to go back to what it was..

but the people who made this site didnt listen to the members.......not one bit...

again and again we aare told your doing something about the stupid scam / spam messages but hey guess what a year on and nothing has been done.

o heck we NEVER got them on the original sites...but we sure do now..

o and i cant remember even saying this site should only be for patients either....

maybe you could go check the parient to carer membership on the share site....against what it is now...

i think you will find its dropped big style...

IF i had originally joined this site and not the share site i would have been scared stupid by all the posts that jump out in our faces as soon as we log in...

i seem to remember on share on the opening page we had a list of all the forums...and we clicked on the relevant forum ..

but not now we log on and get horrible death.....descriptions of peope dying.....

OF course there is a place for that stuff i know that....

of course on the share site we would only see that sort of stuff if we clicked on the coping with loss thread....

still....if you cant see how when we log on we are greated with all the scarey stuff ..fine....leave it as it is and patients will stop coming here even more...

never mind who am i and what would i know....

iv only had cancer for 2 years 6 months....been told twice iv got 2 months at the most to live...been in a hospice...had my dad die 10 months ago.....my good friend skipper who i was with when he die and my female friend tammy die age 28 and had 17 doses of chemo, been in two different hospitals , met a couple of hundred patients in chemo units and hospitals so any opinion i have doesnt count does it...

just like when those far better site share and what now got booted of no ones opinion counted for anything..

good bye mac site just like a few hundred others il stay on my face book page..

xxxxxxxxxxxxx

anyone on there is welcome to ask for my mac nurses phone number if they want to see if i am real or a fake

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FormerMember over 14 years ago

ps

and i must add IF i didnt care so muc about people on here who are genuine.....plus all the genuine members to come on here in the future i would not give a dam about how down hill things have gone...

brummie mick was spot on with all he said about the change over when it happened....he got ignored also...

believe me......

this site for a new patient has become a very scary place to be....
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