Need advice

Hi Devon cat, I just popped over from Carers as I saw your post was unanswered.  You don't sound negative at all, you're just being practical and hopeful, nothing wrong with that. I can't help with the whipple but sometimes people don't answer because they're unsure what to say. Perhaps if someone sees a reply you'll get more responses, fingers crossed. Although I don't know about whipple, we have lots of people on the site who have survived years after a terminal diagnosis. Saying that she has 'lots up her sleeve' sounds really positive; the same has been said for my husband and I hold onto that. How are you feeling in yourself at the moment?

Big hugs,

hello. I am struggling with the new platform so I hope this gets through to Devon cat . I receive posts very erratically at the moment so I feel I have come in half way through a conversation without knowing what has already been said

I was diagnosed with pc in march 2019 and following a whipple and 12 cycles of  chemo the recent scans show no trace of cancer. at the time of diagnosis the prognosis according to the surgeons was very poor and although time will tell I am feeling remarkably well. However cancer is never far from my mind but I am not a worrier and we are leading our normal lives and looking forward to  the future [ covid19 permitting].

It is easy to say but i firmly believe in a glass half full philosophy and having a positive outlook with the support of friends , family , this forum and the team at the cancer centre really does help.[ not forgetting my superb GP]

I think answers can be a bit elusive , we are all different , but to use a cliché take everyday as it comes and enjoy

Best Wishes 

Kevin 

Thank you for replying, I'm feeling pretty well in myself, 

This new site is very hard to get on with at the moment, I keep getting old messages, hopefully it will eventually get sorted.

I hope your husband is well and again thank you for replying

X

Hello Kev, you and me both not sure they have it right with this new site? I'm also in the incurable group and it seems very little gets through.

Thank you for your reply I just needed to air my worries glad it worked out for you with a Whipple and long may it continue

X

Hi Devon cat and kevatvinegarhill, We (the online champs) are in the process of feeding back to the admins what needs to be sorted with the new site. Is there anything you could specify that is difficult with the upgrade? The tech team need the details so they can take action. The bits and pieces some of us were unhappy with are gradually being addressed and I only recently discovered that some of what used to be immediately visible is now a mile or so scrolling down. If ,say, you could have something altered, what would it be?

Hi LoobyLou

going back to the end of last year i had a call from the community about changes that were being considered to the site. Mainly it was to do with an ;improvement' in notifications being sent. My view then was that nothing needed improving as the old site worked perfectly well and was simple to understand and easy to use. By the way i find it difficult to believe that forum members were complaining about the site.

The changes were made which are confusing and in my opinion pointless. people going through a difficult time do not need to faced with problems using the forum itself.  I have been asked to be a community champion but quite frankly despite the benefits the forum can bring i do not want to scratch my head thinking about how to work things to the detriment of offering support and advice to those who need. It wasn't broke so why 'mend' it? what need to be altered is a reversion to the old platform

sorry about the rant bit i feel changes have been made for changes sake

kevin

Hi kevatvinegarhill, the site was upgraded about 2-3 years ago and the complaints were from the users who didn't like that upgrade. Please don't feel the need to apologise; it's your site and you have every right to express your feelings. The company that did the upgrade will only make customisations if Mac can prove that enough users want a specific alteration. Our own tech team can make minor changes, but more than that is not available to them. Since the old upgrade was made by (I think I'm right in saying this, I'm sure the admins will correct me if I'm wrong) a different company, going back to it couldn't be done. I'm often finding it difficult too, and I had a training session on the new upgrade! I'll pass on your comments and hope you don't get the standard 'we're working on it' reply.