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New format

9 REPLIES 9
Member

Re: New format

About what format are you talking

Member

Re: New format

I agree I am struggling here

 

Community Manager
Member

Re: New format

I'd like changes

Highlighted
Member

Re: New format

Oh, and there also appears to be a very unhelpful text limit as my last post was truncated! 

Member

Re: New format

Recently diagnosed with breast cancer, operations done, now waiting on scan and chemo to start - I've been doing plenty of research and have to agree with the other people in here who have commented on this site and its format/structure.

 

It is such a shame, it could be a really good resource for us breast cancer sufferers!

 

Have found lots of good stuff (by accident!) on an American site: breastcancer.org. This site could maybe learn something from them? I know a lot will be down to your funding and resources, but hope you can maybe turn it around for future users. It is so emotionally draining when you are diagnosed with cancer to have to be hunting around for information which should be much more readily available these days from so-called 'official' sources of cancer information (the main one being MacMillan).

 

I have been searching for dietary advice when going through chemo and now just about sorted, but it has taken a lot of time and research. Personally I haven't found much so far via MacMillan (including their cancer cookbook - sorry, but it's not that great) or any of the other UK mainstream cancer sites that places any emphasis whatsoever on foodstuffs and diet. Very disappointing, but I now realise this is to be expected as most standard medical training doesn't seem to incorporate food and diet into patient treatment in any comprehensive way.

 

We still have a long way to go.

 

Hmm. Just noticed. Even the emoticons in here are poor Smiley Happy 

 

Fortunately I had been given and recommended some books to read which has helped enormously. If I didn't live in a fairly rural place and had managed to get myself to a Maggie centre much earlier the job would have been made a lot easier.

 

All I can say ladies and gents is get yourselves along to your nearest Maggie Centre if you can, even if you have to drive a distance - it is 150% worth it! I wish I'd gone as soon as I'd been diagnosed.

Member

Re: New format

It's taken the ease and comfort out of the service?  We ladies are still the same ladies, but this seems to be a touch of the old ' if it ain't broke then why try to fix it ' - something I have recently experienced this week within the Cancer Unit  I attend.  All my previous experiences there had been one of efficiency and everyone at end-user situation knowing exactly what they were doing and generally staff/patient ratio working in harmony  -  if what I had experienced the other day, with the upgraded computer system (that actually lost me in the system) had been my first ever appointment, I might have thought I'd done a wrong 'un choosing the place - desk staff struggling, queues of grumbling patients, stressed nursing staff having to negotiate between patients and consultants . . . . . .I actually had to name the BCN who had personally given me the appointment date and confirmation, because I was starting to doubt myself ( I'm 64, enough said! ) History seems to dictate that those who are not in the actual work environment make bad decisions for those who have to get on with it? Bureaucracy again . . . . .sorry, to moan.  I will continue to look in and touch base when I can find familiar names and threads - but crumbs, we're stressed enough with why we come on here in the first place haha. Thank you for allowing me a rant.

Member

Re: New format

I’m new to this group but it’s such a user unfriendly site. So think I’ll leave. Why can’t someone see how difficult it is to find your way around, look for posts. Comment. It’s awful. Sorry but it is. 

 

 

Community Champion

Re: New format

Millie I have to agree that the changes have not been for the better, such a shame as it was an easy lay out and very user friendly and I would pop on daily and help out when here I could but it’s such hard work to navigate around the site now that I rarely do 😕 

Member

New format

I do not like the new format, and rarely use this site now. Not easy , not friendly, not informative, not useful. Secondary breast sites more useful. Poor and a shame for a national group which is very underutilized.