this site

I to think Rebecca's reply to Graeme was patronising.He has always been honest and spoken his mind but has never been hurtful to any member here. Graeme is much respected by many members on Mac and will be very much missed.Admin has no right to stop people voicing there opinion as long as its for the good of all members and not meant in an aggressive or rude way.Rebecca's comments will not make many members very happy. And yes the What Now and Share online community was far far better, but members opinions dont count. We have lost a great member now Graeme is leaving he put a smile on our faces, there's not many like Graeme and Keezer whose humur has been a breath of fresh air .

Lucy Lee. x

hey do you think i give a dam what rebecca says to me....

because i dont...

all we get is the same old usual stuff about how everything is going to be sorted

BUT we have been hearing that old reply for over a year...

she cant have read my post...because i never once said carers or anyone else shouldnt be on the site yet thats what she seems to have gone on and on about....

in my opinion

the opening page should have a list of the forums on here and NOT the latest posts because straight away we dont know what post is off what thread...

if it opened with just a list of the different threads

general cancer thread

coping with loss thread

bereavement thread

chat thread

etc etc etc

then we would not be instantly hit with

" a horrible death "

my partner has just died...

and 20 other posts that are scary or negative or about dying and such

those who needed to use the coping with loss thread would just click on the link

and those wanting to go in the general chat forum would do the same

etc etc etc

For sure

any genuine person just diagnosed  would not be hit in the face with the scary stuff and the sad stuff etc etc

infact hey wasnt that how it was on the share site

yes it was...

and whats more that way we found the place we wanted straight away...

no one lost there posts

or got lost on this mixed up stupidly made site we have now..

how to stop the spam mail....do what all the other scam and spam free foruns do on the internet block the @ symbol and no one can then ask for our e mail address with a promise to love us....and the fool who was trying to get money from me for  so called ill person in the philapines would not have been able to have left there e mail address for me to send money to...

i dont know if you worked on here rebecca when the sites were called share and what now but no one listened to any of the members...members were ignored.....our opinions where worthless...

no one asked for the changes

no one wanted the changes...

and for a fact loads of people with cancer could not work this site out and they got left out in the cold

go on facebook and see for yourself the amount of people who dont use the mac site anymore

hey we are safe on our facebook pages with people we trust ...i never get any dumb messages and the huge difference is its so dam posative on facebook....people still laugh and joke and talk about good times and good days...

and thats got very rare on here

yes look at poor kezzer...

she has had it so so hard and hey i cant remember her moaning on...maybe on a rare occasion...

look at bob jk......he sure has had it hard with all the treatmenst he has had and i cant remember bob ever moaning on about anyting..he is so so brave

i nominate bob jk for the member of the month award

i tell you what i havent met anyone who is genuine who does bloody moan on and on and on and on and on...

just look at anyone from the old sites.....its a rare day we post scary stuff unless we have no choice

i started a today i had a good day thread on here about 5 days ago

2 people have posted on it...

il say this...

if someone joins and all they do is post scary stuff and bad stuff and sad stuff i tend to avoid them incase it another attention seeker...

AND YES YES YES I KNOW EVERYONE IS DIFFERENT...

I KNOW BAD STUFF HAPPPENS....I SHOULD DO SHOULDNT I....

iv had 3 people special to me die in the real world in the last 16 months......tammy.....skipper and my dad...my dad actually was in castle hill in the not cancer wards when i was in the chemo unit ...i couldnt even go and see him incase i got a bug...he was in a ward about 50 yards from me twice when  u was in castle hill and my dad died...

how sh-t is that then ?

i couldnt even go and see him....add to that i was full of nasty r-dhap and couldnt stop puking up..yuk

but not to worry...

there is nothing wrong with people posting what ever they want on here...

i just wish we posted in the relevant threads like we use to do...

and what makes me so dam mad is us members should not be even having this rant...

we shouldnt have to even face the scam and the spam on here and we shouldnt have every thing stuck in our faces the minute we log on...

but whats the point ......there isnt a point

brummie mick and others tried to stop all this happening ...the mac people were told what would happen when they made the changes

and they didnt listen

i thought it was our site...for patients and carers.....how was it when we all got dam well ignored...

theres people who just wont come on the site anymore....genuine people....caring people

whats the point on asking for the site to be sorted out...

its not going to happen...

not to worry

anyone can send me a pm and as allways i will answer them all...my pms have allways been set as open to everyone

o well soon be friday when i go for my every 12 week blood test to see if my cancer has come back and a dose of retuximab as well...

course if it comes back then so be it im not that bothered because does it change anything if i am bothered ?

nope...

i have two very special friends on here .... adam and joan...all 3 of us have NHL...all in remission....

if one of us gets it back i hope its me and i so so mean that...

and you can add to the fact that my hermia scar is as sore as hell and iv not been able to get out for a week

but as allways im fine...

if my mates are ok then so am i its that simple to me...

maybe im to dam posative ....

maybe its me just being an idiot..

you all know you can tell me to shut tfu and i will still be your friend if i can help..

time to go play farmville ...and catch up with the 40 odd people with cancer or with loved ones with cancer on my facebook site...

and then there loads and loads of x members there with there pages as well

and i reckon most of the what now people are on there as well...they lost there site altogether  !!!

xxxxxxxx

yes cancer is about bad stuff and bad times and sad times...

but its also about living as well...

if only they had not changed the sites we had....

john

dingos kidney

rofl

hugs john.......you made me laugh...

As an old what now user I understand fully what Graeme is saying I lost touch with several users when the site switched due to all the problems at the time.

I also can see his point that a simple change would suit all and make it a more accomodating site.

Rebecca we have heard that message so many times, no offence but its wearing thin for the longer term users and even more offensive is the lack of sharing of information, timelines as to when we might see changes.

Take us on the journey and don't treat us like mushrooms.

I understand you are only the messenger but it is about time senior people addressed some of the users concerns.

If the people who feel strongly about this or those who have left the site because of these issues started a campaign I think we would see and hear some quick action.

So I ask you all at macmillan take us with you and show you are listening we all raise large sums to support you, its time to give a little back to this community.

john

I can only speak as a cancer patient and one thing I see is that no one tends to listen to us and take on board what is actually being said and it is happening hear also. For admin....have you walked in our shoes, do you have any idea what we go through and what those close to us go through. Friendships are made on here that are unbreakable because we know what really goes on through  cancer journey and we help where we can with those starting out, especially our Graeme, I am loosing more and more friends from this site and not through death. I really think you need to re think this site and listen to what is being said...Carol