Quiet isn't it!!!

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Quiet isn't it!!!

Postby Marc_U » Fri Dec 22, 2017 3:10 pm

Has anyone noticed, but the forum isn't exactly a hive of activity? :)

It seems to almost never any one about, apart from a few tumble-weeds.

Does it get more lively at over times of the year, and that I have just joined during the 'quiet season'???
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Re: Quiet isn't it!!!

Postby member_41389 » Sun Dec 24, 2017 9:22 pm

Sadly it seems that the forum is just about dead. I've seen a few threads over the last year but I think the real problem was that it was a very unfriendly place to get to with separate login and user ID plus an acceptable use policy.
I try and check every day or 2 but have pretty much given up on getting a response.
Perhaps we can inject a little enthusiasm into things that way?
All the best for Christmas and the New Year
Tim
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Re: Quiet isn't it!!!

Postby Marc_U » Mon Dec 25, 2017 10:29 am

It is a shame, as so many forums can be a lively place of encouragement.

Maybe it is a indication that problem-making Pituitary are more of a rarity - or that once successfully treated, they feel so much better that they no longer feel the need to return.

Hopefully things will be better in 2018....... We can always hope.

Have a good holiday Tim.

Regards,
Marc
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Re: Quiet isn't it!!!

Postby member_41389 » Tue Dec 26, 2017 9:27 pm

Hi Marc
Yes it would be good to see more people posting. I believe there was a problem 5 or 6 years ago with flaming and the like which drove a number of people away. I'd love to hear from pituitary patients who are doing well. I know they must be out there but never seem to post. I think it would help if the volunteers on the helpline etc were encouraged to join in - perhaps the new endocrine nurse Holly could be persuaded to take part.
I will try to remember to discuss this at our local support group meeting in mid January (in Bristol, Southmead Hospital Learning and Research centre ground floor, 7:30pm on 17th I think).
Hope your Christmas went well and you have a happy and prosperous New Year.
Tim
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Re: Quiet isn't it!!!

Postby Marc_U » Wed Dec 27, 2017 12:44 am

Hi Tim,

I would also like to hear from patients that are doing well, especially as it would a great encouragement to those of us like me, who are on the starting end of this journey.

I suspect that there are a number of silent watchers, as the number of views of this Topic seems to be growing faster than could be explained by our occasional checks on the forum.

Unfortunately my nearest Support Group is Preston (no information as to their next meet), but that is 3/4 hour drive south away from me, which is a bit further than I want to travel. I am hoping that whenever the Cumbria group gets organised that it will be a bit closer to me, but odds on likely it probably end up being in Carlisle, which is also 3/4hr minimum north of me, so I probably won't gain anything. :(

Oh Well - will just have to see what 2018 will bring. :)

Regards,
Marc
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Re: Quiet isn't it!!!

Postby Pat » Wed Dec 27, 2017 12:50 pm

It has been quiet indeed - perhaps more folks now join in on Facebook groups of the various pit conditions. We will be looking at the Forum in 2018 to see how we can improve interaction.

In reassurance of how well other patients can do, we hear through the Helplines and other anecdotes of patients in their 80s (and a 90 odd year old) for example, who were diagnosed and treated maybe over 40 years ago and are doing well. Some patients have had diagnosis and ops in their 70's & 80's.
This is what I wanted to know 31 years ago when I was operated on. I hope it helps a bit.

One patient gave us this quote following a rough journey - “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”

Happy, healthy New Year everyone and keep 'learning to dance in the rain'

Pat
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Re: Quiet isn't it!!!

Postby Marc_U » Wed Dec 27, 2017 1:51 pm

Pat wrote:One patient gave us this quote following a rough journey - “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.”


Yes, but it dodging between the rain-drops that's the hard part :)

Regards,
Marc
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Re: Quiet isn't it!!!

Postby plum » Fri Dec 29, 2017 10:52 pm

hi

just to add to the discussion, it agree that it would be good if this was a more lively forum.
I go through phases of checking in every few days and then giving up when there is nothing happening. maybe others do the same.

could it be that people just struggle along day by day. nothing spectacular to report, just getting on with things.

i do like the quote about dancing in the rain. .... but wouldn't it be nice if the rain would just go away???

happy new year all

plum
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Re: Quiet isn't it!!!

Postby member_41389 » Sat Dec 30, 2017 9:09 pm

I've just realised that there doesn't appear to be a simple way of just reacting to a post. Am I missing something obvious? I simply wanted to react to Plum's post but found I couldn't see a way of doing it. :D (In the post a reply box the preceding smilie appeared as two characters).
I've just realised that the line above the subject in the edit box should allow the posting of a simple character from a very restricted range. However I've just tried it and nothing appeared in the preview pane (it was a simple outline blue star).

Now even more confused.

Tim
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Re: Quiet isn't it!!!

Postby Mgh » Fri Jan 04, 2019 1:53 pm

I too check in from time to time. I find the lack of ease of use for posting and the slow speed of getting to the forum puts me off. In comparison, the ADSHG site is a breeze and very active.
I much prefer using the forum format to using Facebook.
I agree with others that it would be good to hear from those who are doing well. However, those of us who are a bit more complex appreciate being able to find others who may also experience additional less common problems. It helps me to compare notes and learn how others are coping or have coped.
Thank you in particular to Pat for her sterling efforts and helpful responses.
Maria
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