Long term Remission??: Hi, I have been going... - My Ovacome

My Ovacome

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Long term Remission??

lisarm5 profile image
9 Replies

Hi,

I have been going through quite alot of the blogs on the site and have noticed that there arent too many ladies who have had a long remission i;e over five years. Does this mean that OC almost always comes back at some stage or is it that ladies who are lucky enough to have long remissions no longer feel the need to visit the Ovacome site?

Ive also noticed that there are lots and lots of ladies in the directory, but that lots of them dont seem to post anymore. I would love to think that it was because they are all enjoying a cancer free life and dont have the time to contribute.

What do others think??

Lisa x

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lisarm5 profile image
lisarm5
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9 Replies
wendydee profile image
wendydee

Hi Lisa

I'm still here, ten years on ....nearly! There are many reasons why women don't post anymore. Some never post, but look at the conversations and get the info. A lot feel that they've been there, done that and now want to move on. There are those who, as you say, are too busy to post any more. Good luck to them I say! Sadly, some pass away and there are sometimes tributes to them, but there are some of us who still stay in touch. I've made many wonderful friends on here, and we've all got more in common than on facebook!

It's good to stay in touch, isn't it? If we've got the time and the inclination ;-)

Love Wendy xx

in reply towendydee

And I for one Wendy am glad you've stayed :-) love x G x :-)

wendydee profile image
wendydee in reply to

Awwww, thanks :-D

Xx

MargaretJ profile image
MargaretJ in reply towendydee

You are such a positive example and something to aim for Wendy!

Love M

Hi Lisa,

This often goes through my mind as well, I wish I had the answers, there is no accountability, In a way I wish there was... even if it meant checking in once a year... But there is no easy answer to this... we do know of some that are no longer with us...some have joined but then didn't have OC (I know of some like that) but others? I have no idea... and I am with you on this one.. I'd like to think that many have got better and moved on. Best wishes love x G x :-)

ChrisH profile image
ChrisH

I met a lady who has been over 24 years in remission. When you consider the treatments then, it is remarkable and extremely encouraging. I also hear of people that have had one or two reoccurances then gone into long remission. So when my onc says its come back once so it will keep on coming back, I choose to ignore him, what's the quote, " lies, damn lies and statistics"!

Love

Chris

Dolcie profile image
Dolcie

Hello ladies, I read the sight every day ??and am always interested in all your questions! I to after having surgery was told I have got it all "but you do know it will reoccur " thinking yes ok something I have to live with and will always be hanging over me. But 3 months I was surprised its already reoccurred ??so there are so many different stories of reoccurrence. So I am still here but don't post that often x

thehusband profile image
thehusband

Hi, my wife was diagnosed stage 3c 25 months ago, and in that time she has had 3 different lots of chemo and is waiting to start her 4th line chemo.

She has had short periods of 'time off' but none that would be classed as remission and we keep hoping that at some point she will get a longer (year or more) period of 'time off'.

I always encourage her to view her OC and chemo, like a diabetic views insulin....a necessary part of her life but not something that has to take her life......though i guess its easy for me to say.

Whippit profile image
Whippit

Dear Lisa

I think your question raises a few interesting points and ones Ovacome are likely to be interested in discussing because there has to be at some time some sort of archiving of unused accounts or there will be more shadows on the site than active members.

It really would be an excellent platform for Members to discuss how the membership of the site should be handled and perhaps to present our suggestions to Ovacome. It's probably not the sort of discussion they feel comfortable instigating. The idea of having to log in once a year to continue membership seems a practical one. Another might be to give us the opportunity to give instructions on our membership profile, e.g. What to do if no activity after 1, 2 5 years. Some might want to remain in the active area.

I hope my dear family would let you know if I lose the battle for life but if they should forget to do so I'd want to leave instructions in order that I could be archived off into a Membership Garden for inactive members. It would be somewhere my friends could access if they wanted to - but it would mean we're not confronted with the spectre of a host of shadows remaining in the Members' Directory.

Any one else any ideas?

love Annie xxx

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