When I Joined this group in early 2012 it was full of help , support and friendly advice and good humor for all ..all ... that is the person with OC and their familes ...
There was none on this bickering and ill feeling that there is now ..goodness knows how new members must feel when reading this ..I cannot begin to think what they make of it all .
I often wonder what the lovely ladies who have lost their fight against this beast this year and last would make of this ...
Ovacome needs to go back to supporting and helping one another .
Jan
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Jan76
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I thoroughly agree with you after all if it hadn't been for this site I would never have met you and found a dear friend.
I have met so many wonderful people on here and learnt so much from everyone that I have felt empowered to ask my onc questions I may not have known to ask.
I hope this site can calm down again and feel a bit like the old one we all love.
Thank you Jackie .... friendship through Cancer via this site has been a wonderful support to so many of us and I would hate to see many of the old and new members disappear .We need to be encouraging more women on here and not be pushing them away .
For a change, a lovely post. Let's hope we have seen the last of silly bickering - like you say what must new members think. I certainly wouldn't have joined back in 2009 if I had seen posts like we have seen over the last few days.
Thanks Shelia , All this unrest and upset makes me really sad and its such a waste ...this bad feeling .... looking forward to things returning to how they were .
Love Jan xxx
Three Cheers for Jan, right on the nail, we all need a bit of humour to get through this "BEAST" Love Trish xx
Hi Annie , Yes you are so right ..this site has been a lifeline to so many women and from the dreadful word Cancer comes 'friendship' and sharing ones experiences as having cancer can be for some a lonely place to be .
I do too so hope Ovacome can continue to support those that are in need of help and advice .
Thanks Jan, I value the friendships more than anything and I've found the various opportunities to meet others in the same boat - at the Ovacome Members' Day, at the Target events, the little get-togethers we organise amongst ourselves, and those courtesy of Ovarian Cancer Action all very supportive, inclusive and reassuring. When I spoke to the British Society of Medicine I told them what the charities do for us and particularly this site. I'd like to see it thrive and attract even more members. It gives more support than anything else. xxxx love Annie
Dear Jan, I couldn't agree with you more, this is as you say a support group and not the place for petty bickering, I have found that this site has helped me a lot and the understanding from all its members has been very good, but as you say not of late, so please lets get back to what this is supposed to be a SUPPORT group! Love Pam xx
I was thinking that when people are dealing with illness or caring for people with it, there are bound to be very raw emotions. Sending my love to everyone here .. Love Tina x x
I too have found this site a lifeline and I have met many good friends on here. I very much regret having upset people by my contributions to the questionable blog. I was trying to drawattention to the fact that the person I was addressing had caused considerable distress by his contributions. He never admits that he may have causedoffece and I allowed myself to get drawn in to a bitching session. I have no real excuse except it was not a good day for me. II took my contributions down because they were exacerbating the situation and Upsetting people that I care about. The site seems to have changed in tone since HU changed and there was a lot of resentment when a group of us who had met and become close set up our own friendship group elsewhere. I will now contribute on here only when I feel able to offer some experience that may help others. Thanks to all those who seem to understand how difficult it is to deal with this illness. Hard for carers and hard for those of us with it, we all need to remember that!
It is not good at present, week 6 of weekly Taxol on Monday and the side effects are beginning to make themselves hard to ignore. Being lectured on the apropriate treatment does not help. Last night I had to leave the opera at the interval because of serious back pain and nausea!
Have only just caught up as our Internet was down. I'm so sorry you are feeling so rough Margaret - I know it would have to be bad for you to come out of the opera! Chemo can be so debilitating and the cumulative effect is horrid! Sending you my love.
Dear Margaret, I'm so sorry that you're having a rough time of it. You're always so upbeat even through the worst situations and I for one just don't know how you manage to keep everything together having breast cancer as well as ovarian cancer to deal with - and a degree of complications with both.
Your missing half the opera tells me things are really bad for you. Do you think they'd give you a complimentary ticket if you explain the situation. I hope you get to see it again when you're feeling more like yourself.
Thanks Linda! Worst thing about it is that it makes me very crabby! I end up not liking myself much! One of the side effects is awful headaches! Not sure if it is the chemo or the daily paracetemol. I have never been a great advocate of painkillers but I have paracetemol prescribed for pain control and I know that can result in headaches. I know it is not migraine because I do still get migraine from time to time and this is quite different. Even the nausea is different!
Hi Margaret , so sorry to see that you are having a bad time with headaches .. hope you can get some help with them and soon as I know how debilitating they can be .10 years on from a rare blood clot and bleed on the brain I still have problems with my head and headaches .
I spent two years on Aymitriplyne but they did not help so came off them and Just try to pace myself .
Love Jan xxx
Dear Jan. thank you for your lovely post. Hopefully the conversations/discussions/arguments on here won't get out of hand again an we can cut each other some slack.
Thanks Linda , do so hope things can go forward now and we can go back to doing what this site is for supporting women with OC and their husbands / partners and families .
We totally agree Jan, There is a reason that Ovacome exists for "All those affected by ovarian cancer" and not just for all those diagnosed with ovarian cancer. If that is what is wanted then it needs to be sought elsewhere.
This forum exists in part to reflect the fact that just because women are the ones with the diagnosis, it impacts on their families who need just as much support as the women themselves (be they husbands, partners, daughters, sons grandchildren, friends or otherwise - who are others to say?). so that they in turn can support the women they love. At the end of the day the relationships here do not replace those in the real world.
I have been ashamed of some of the uncaring behavior on the site over the past month and would hope that personal experiences aside we should allow for the fact that many men are in desperate need as they face loosing their beloved partners. We may not agree with their perspectives, but they should be considered, and are in fact as valid as our own.
The fact that some men have been bullied off this site is a matter of great pity and something that shames the community in my personal opinion.
In future , those exhibiting prejudiced behavior be it regarding sex, race , sexual or religious orientation will be banned. (and that means by greater means than just membership login!)
I think you have said and covered the subject. I think that this is a reminder that we are all on here suffering from the whole of the journey of Ovarian cancer..It involves all who are with us and supporting us the cope with this awful disease.
I thank you for taking your time up whilst on a busy schedule over the week-end to respond to the site.
You said, " If that is what is wanted then it needs to be sought elsewhere."
I hope that message strikes home to those who seek something different. The unique attribute of this forum is that it is all inclusive and as such is a much needed resource for those of us who are desperate to support our loved ones through OC. I fully appreciate that some women would prefer that men did not have access to some very personal details that are shared here, but it remains open to them to share only what they feel comfortable in sharing. There are other places they can go where men are excluded and no one is at all critical of them doing that.
The male contributor who has seen fit to delete his account has been subject to vile personal abuse, and while some are undoubtedly glad he has gone, an examination of conscience should make this community thoroughly ashamed. With his partner closer to the end of her journey than the beginning, where are they now to go to find support at such a critical time?
Ladies, Men who contribute here are not your foe. OC is. I want to be as supportive to you all in whatever way I can and I also seek support from you through what is an equally traumatic experience for me. Please do not spoil that by trying to turn this platform into a place that only welcomes comments from women with OC.
Thanks, Andy. I don't like to say too much, as I really don't know all that has been going on, but nobody should feel bullied. It is all very sad, and very difficult. Of course men are in a very fraught state too, because of this disease, and we should all remember that. Thanks to Louise for her wise words.
Thank you Louise , One of the reasons I Joined this most valuable group in the first instance after being diagnosed was because I had met two other ladies with OC who untill they had met and spoken to me had not met another lady with Ovarian cancer both ladies had had cancer for over two years . They off course had support from the cancer nurses and their familes but not the net work we have here via Ovacome .
Ovacome has been a life line to so many and long may it continue too for everyone .
Oh take no notice of me! I have nothing much to moan about! Just find the unrelenting discomfort a drag from time to time.
Death in Venice is one of Britten's later operas! A beautiful production but the music requires concentration and I could not concentrate! Annoying! To cap it all I have aquired a UTI and am on my second lot of antibiotics. My GP has sent samples off for testing and I also have mouth ulcers and am busy slathering on bonjela and using the hospital mouthwash! If that, however, is all I have to complain about I am not doing badly.
Today, however, is another day and I am making Paella for friends who have just moved! Before that I hit Tesco's to replenish my stock of essential items to help deal with side effects of the colostomy! The bits they do not warn you about!
Margaret - sorry to hear you are suffering so many side-effects. They seem to mirror my own side effects at the moment, ie awful nausea, unpredictable stoma! and mouth ulcers. I was prescribed Gelclair by my GP which is really good for the ulcers. Hope your UTI clears up soon and both our stomas start behaving in a more civilised manner !!!lol Take care xxxxx Col
I fortunately (it sounds like) haven't seen what you are all talking about. I think the trouble is that emotions can run very high at times, as Tina said above, understandably with this cruel disease. Very sorry this has happened. I echo what others have said - lets take a deep breath and move on.
Thankfully the offending comment has been deleted, unfortunately too late as the male contributor to whom it obviously referred has chosen delete his profile and leave the site.
There were several different attacks on several different people on that thread, all of which I found unacceptable, however it was your comment about 'male contributors' that upset me the most given that my husband is a contributor to this site. I also believe that it is this attack on men that led the member to leave (of course that is only my opinion).
I am also sorry that you have not been feeling well but I don't consider this an excuse to make nasty offensive remarks to ANYONE, we all have bad days Margaret
And at that I also shall call it a day on this.
Hi Margaret .. I hope you sleep well tonight .. Sending you my good wishes .. I have my scan tomorrow .. Then see my oncologist in 2 weeks. We talk treatment options then and by then ill hopefully have fully healed from the op. Love Tina x x
PLEASE DO WE REMEMBER HOW THIS POST BEGAN.
Jan has tried to get us all back to what this site is about.
Can I ask that this is the last post on this particular blog. We don't like to get all heavy handed with moderation, but there have been some very high emotions which are not helped by anxiety and the very stressful situations that some of you are in.
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