this site

Hi,

I am new to this site, but have noticed the following things which annoy me:

1) the site is very slow, and sometimes you spend ages writting something that suddenly dissapears totally, and to re write something that has just come from your soul, never sounds the same second time around.

2) Most days i have been targeted by forign persons wanting a realtionship, talking smutty talk, and the like. This is not a dating site, and any such mailings should be weeded out, if i want a date i will go to a dating site! i dont expect that on here.

3) The chat room, as good as it is, can also be a nightmare to use, suddenly it knocks you out the room for no reason, or it freezes and you miss a load of conversation, very irritating indeed.

Also it would be nice if there were more different rooms, ie: ladies room, mens room, rooms for different types of cancers perhaps, instead of just the patient and careres rooms, somtimes we also want to have a laugh, and sometimes we need to be serious, its not all doom and gloom all the time, we have feelings just the same as before we were diagnosed, and dont need to be treated with kid gloves all the time, and may want to talk about other things other than our own personal problems, so some varied rooms would be nice.

These are things i have noticed, and only critisisms, in general the site i have found a great help, just being able to talk to people who are having the same trauma as myself, and who are not related in any way, somehow makes it seem ok to tell them your innermost feelings!

So keep up the good work, but give the site a tweek here and there.

Pauli...........

I feel like I need to respond to this thread as it put my back up a bit.

I understand completely graemes point about how the forums and bloggs pages are laid out, if you click forums you are greated with all the recent posted forums and it is difficult to find ones appropriate to you situation, it would be better to have an interim page that gives the general subject themes like gerneral cancer discussions, or coping with loss and from there to the relavent recent posts. I realise that add a whole extra level of organisation to that part of the site. It would be very easy for new joiners who are patients themselves to find posts that are very down and about death with the way the site currently is and equally if like me you are a grieving spouse you find lots of posts by patients which at that time may not be the thing you want to read.

I have never seen the old site, so dont know what it was like but it has gone and this is a really good resource and support for so many affected by cancer but there are definately some things that could be done to make it better.

I do realise that graeme you did not mean to be so anti career from your subsequent posts, but you first post actually came across very anti career/ bereived relative. It actually made me upset and angry, as this site has been a great support to me in these very difficult months. But you are right I think things should be a bit easier to separate out. If my husband had read some of the posts when he was diagnosed he would have been even more scared then he already was.

T

right guys i know im fairly new to all this and wasnt on the old site. what i wanted to say was althought this site has problems im sure admin are working on sorting out but i have found the chat room a great source of support especially at the moment and yes im a carer. i think we should all have more rescept for admin as they do the best job they can with what they are told they are not miracle works like you all seem to think they are and they cant click there fingers and make evrything better and the way everyone wants it to be.

Yes hate me for what i said all you want because i dont care its my opion which im entighlited to.

alot of people are thinking for some reason i said this site should be for patients only

that really is becoming a myth because i did not say that.....

why would i when so so many times i have posted that for carers it can be a lot worse...

i constantly post about if i die thats fine......its those left behind that worry me the most as is the case with most patients i have ever met...

its the dam site lay out that causes the problems..

i didnt even know linda had posted her life isnt worth living in coping with loss...

i woudnt have even clicked on the post if i had know that.....i would not be gong anywere near the death stuff when i logged in if the first page just gave a list of threads....

if you look at the original post i did go back within minutes and admit myself my reply sounded bad...

but believe me as someone who has fought aginst dying for over 2 and a half years....and seen many good people die from cancer who so so did not wan to die...coming face to face with someone saying life is not worth living is like ARRGHHHHHHH.

i dont want to see 20 posts about death and dying when i log on all the time....why would i ...

i wouldnt have to if the opening page showed just the foruns list.....i would just go in the chat forum...or the general cancer forum....and then get on with chatting about cancer yes...but also chatting about life....and laughing and smiling like we one did on the share site..

course i would still go and try and help those coping with loss as i allways do try and do...

but it wouldnt be in my face or anyone elses face from the minute i logged on.....

my own dad died less then a year a go...he was in the same hospital as i was at the same time though i was in the cancer centre and my dad was in the no cancer wards.....i couldnt even go see him as i had a drip shoved into my groin getting r-dhap for 5 days and puking up with no immune system...my dad died about 50 yards from where i was....skipper died...my special friend tammy died....so i know only to well what it feels like..

some of us patients refuse to get down no matter what if we can help it...

a list of forums instead of latest posts is the simple answer....and guess what.....we had a site like that in the first place

ARRGGHHHHHHHH

the mac people also need to find a way to protect all GENUINE ....members from spam amd fakes....it may not be a big dea to some users but believe me it sure is to some people.....why else do you think people are leaving..have left...and will continue to leave....

so no one said theres no place for any genuine person on here...patient...carer...friends....friends of carers etc etc

and no one said theres no place for sad stuff...and scary stuff.....and dying....etc etc etc etc...

the sad thing...

the most stupid thing is,  if the sites had not changed...... none of this would even be getting talked about.

of course theres one or two on here who if i said the grass was green they would tell me its purple..

hey pauli my life since been diagnosed has got better in many areas.....its sure isnt all about doom and gloom.....your spot on...

if i hadnt found the share site i would be dead right now.....for a fact.....yet if i had joined the site we have now i would have become scared stupid....and left the site ....every 12 weeks i have to have blood test to see if my cancer has come back for a 3rd time...it really isnt nice at times clicking in to this place and being sat with so many threads about death...dying...bad deaths....terminal...weeks to live etc....the changes would mean it never happened...just like the old days.....

so thats it...im going to shut tfu...

hopefully the site will be made better and then people will come back on here....and it wont be so scary on here once again

all the best...even to those who never have a good word to say to me

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

rebecca you can go ahead and remove me from here

iv just got another spam message

ps

steph its been over a year that these problams have been going on..

pps

steph no one will HATE you on here...

if your genuine and they do then there not right in the head