this site

I do agree with you Graeme that this site has gone downhill, and still is for that matter.

Macmillan do however aim to support all those affected by cancer.  Sadly many still face terminal diagnoses for a number of reasons.  Not all cancers are cureable, or even treatable to give a long remission period.

I know that you choose to "do it your way", and respect your decision, but many posts show that not everybody is as strong minded as you.

We all come on this site from different directions, and having different needs, but united in the battle against a vile disease.

hi daffie....

maybe they should split the site into a place for patients and one for carers...

it wasnt that long ago a female with breat cancer posted that some of the threads were going to scare patients stupid and she also left to join a breast cancer forum...

the thing is daffie iv never come across a patient who wasnt posative in some ways.....

look at kazzie and bobjk.....both going through lots of nasty times with treatments and neither complain if they can help it..

then there was skipper who knew he was dying but wouldnt even say so on here he was to busy posting his funny storys and his jokes..

i so wish skipper was still with us....

il be glad when kezziebird gets home from her barge trip...

she posts some funny stuff doesnt she..

me if i have a bad time i just pm a couple of soecial friends on here...i wouldnt post some of the stuff on here...

try and start a posative thread and see how long it lasts.....

im not dumb..i know bad stuff happens...all the genuine people on here know that...

even the tv advert is about good days.....

i value what you say daffie and i dont think i know best...or i am allways right...

plenty of people feel the same way as i do since the changes...

just look at the replies new members get now.....compared to on the share and the what now site...

i wasnt meaning to have a pop at that linda....far from it but people dont read the post

what am i suppose to think when the first thread i click on someone says life isnt worth living...

tell that to any patient and see what they think to that...

that problem could be cured...

all they people who made this site had to do was have the opening page as a list of thread subjects...

with people seeing right away what subject they wanted to talk about...

i wouldnt have clicked on lindas post if it had come up in a coping with loss box.......but everything comes up on one page.....

i remember brumie mick use to be on the site most days.....he hardly ever uses this place now..he also warned the mac people what would happen when they changed the sites.....

plenty of people did....

if im wrong who wanted rid of share and what now ???????????????????

what has happened to all those people who use to come on the sites having never been on a computer before...there use to be quite a few..

now instantly everyone even knows how to blog and what a blog is.....

i lose count of the times i have replied to people and then 2 mins later there gone never to come back on....maybe they get bored of winding us all up..

two weeks ago someone claiming to be in the philapines posted about a young one desperate for money for treatment....even asked me for some....

but when i told them to ask the mac people for permission to ask they vanished..

if im so wrong about everything why have so so many genuine people gone and now use facebook along with those they trust..

yes i am so dam angry with the mac people for messing up what was a totally different experience...and for no reason.....

as a patient.....i am scared stupid that if i die....people wont go on and live for me........

maybe thats why that post got to me....

i dont give a sh-t if i die.....whats the point ?   can i change things ? can i make it not happen ?

NO.....

but i can.....i hope.....make sure that if / when i die those that know me and like me and those who love me like family etc live on.....

thats what matters to me as a patient...more then anything else...

lindas post hurt.....

i guess my reply hurt linda..

i guess neither of us meant it that way...

iv allways said....the mac people are the ones who need to sort it out

this site should be re built by people who know what they are doing....

but we know it wont be.....

as for the chat room....its advertised on facebook

be very carefull in chat rooms.....

its the easiest thing in the world to be anyone you want to be on the internet....

the reason i had a huge profile on here was to let people see i am genuine....

anyone....at anytime.....can have my mac nurses name......or my specialists name.....or the name of the hospitals iv been in...

i dont mind anyone asking me if i am genuine...

but i wouldnt advise anyont to ask anyone on here that question because if you do you will get stamped on....

do you trust everyone you meet in real life the minute you meet them...?

no we dont......

dont do it on the internet either.....

sad really because on share...and what now you could 99% of the time trust everyone..

on share at a guess it was roughly 50 / 50 patients and carers

on here i would guess at 75% carers     25% patients..

believe me its getting a scary place to come for a patient just diagnosed...

-------

anyway daffie you look after yourself....big hugs as allways....

im fine as usual....

after all we dont have a choice do we...

:-)

Big ((((((hugs))))))) to you Graeme x

You are so right Graeme. This 'new' site is nowhere near the same as the old sites.

I have lost count of the amount of people who  no longer use this site since the changeover which is a real shame. Those people needed the support of this site as much as anybody, but the site owners would not listen when we argued against the change, saying it would bring the members together. Well I think the opposite has happened.

I have been using this site since the change and still can't find my way about it properly. On the old 'What Now' I could go straight to the threads I had replied on and carry on conversations with people. Now those replies are lost in the vast wilderness of this site.

I also agree that there an awful lot of people who join this site then disappear off the face of the earth shortly after. Now I know that it isn't everyone's  desire to use the site continually, but I have begun to wonder if it is worthwhile replying a lot of the time now as most of the time I don't get a reply back and you are left wondering how those people are getting on. Perhaps a lot of folks join the forums which is particular to their needs of course.

The jokes forum is hardly ever used these days which is a real shame as I, for one, really enjoyed some of the postings on there. I think there is too much doom and gloom around. I know it is a site for cancer patients and their carers and life isn't always about joking around, but I don't think it does any harm to have a bit of humour in our lives. After all, they say laughter is the best medicine!

Sorry you won't be coming on site as often, but I can always catch up with you on facebook.

Take care, Christine xx

If its any consolation, I talked to a number of the Macmillan staff at Gatwick, and they are all getting the same message. The problem seems to be the structure of Macmillan. Apart from the Cancer Voices conference, there doesn't really seem to be any feedback channels from people affected by cancer to the Macmillan management. They site in their ivory tower next to MI6 and rarely talk to their customers. Even the chief executive Cieran Devane legged it before there was chance to ask him any questions on Friday morning. The web site staff change rapidly, and there is little continuity, and there seems to be great embarassment that they paid shedloads of money for a new web site, and it turns out to be a load of dingos' kidneys.

Last December I was told there would be a meeting to discuss redesigning the web site, and we're still waiting. Macmillan is one of the richest charities in England, and yet they can't seem to get their shop window right. Pathetic.

John