Good evening to everyone; I have spent the last couple of hours reading all the replies to Claire50s post and have been upset at some of what has been posted. Firstly, of COURSE everyone is entitled to post about their feelings and opinions concerning the gamut of this disease; all is valid and valuable from every standpoint.
I personally have found this forum a beacon of light in a very dark tunnel at times and have always felt it was a place where we can all learn from and support each other. Stats and recurrences are a fact of this disease and Im one of those ladies who WOULD read a post about them if someone had something they wanted to share; as said many times anyone could choose to ignore these posts if desired - everyones choice!
Ive known Claire for some months now and she is honestly one of the kindest and most supportive of people ; there is absolutely no way she would have set out to target or villify anybody. As said before if posts are likely to offend then dont read them - some of the comments have been a personal attack and this dear lady has been in tears for most of the afternoon. Whatever the rights or wrongs I think we all need to remember why this forum exists and I feel so sad that this would appear to have been forgotten.
Im not posting just blindly supporting Claire - I think all of us would agree that sometimes its difficult to portray correctly what we want to say when its through written word only. No I dont require anger management or counselling - I just wanted to say that any comments and messages that leave someone so acutely upset maybe need to be considered a little more?
Lastly I most certainly dont want to offend anyone - Im battling a 3rd recurrence myself and want to be able to feel free to come on here and shout ,scream or anything else I feel appropriate. Lets all unite in keeping ahead of the beast!!!
Apologies for the essay but hate to see ANYONE as upset as this. Love to all xxx
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maz54
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It's a real dilemma isn't it ? What to put how much of our personal stories to share what information is needed or not .
I didn't see the original post but don't really need too as its a dilemma I've struggled with often and even more so as my disease progresses. The need for answers reassurance when things are bad but finding a post that causes more alarm then comfort .
All I can say is at that point if it's too hard I stop reading till I'm stronger or in a better place .to handle the post.
We are all at different points of this journey and that's the crux of the matter. someone will be joining us either today or tomorrow on the start of the journey and sadly someone will be at the other end . We all need US. here giving what we can when we can good and bad .
This bl..dy awful disease takes use from desperation to hysterical funny and back again . It's Ovarian cancer fault. we are so lucky to have each other this forum to share our horrid days and our wigs blowing away in the wind days .
Be kind to each other it's the disease that's horrid .
Hi peanut and thank you for taking the time to comment. I must say I was expecting more replies but heyho - people are probably upset with me as well now.
You're right - when dealing with this bugger we go through a whole list of emotions; I try not to dwell in the past and try not to think about what the future may bring .
Yesterday is gone - today the sun is shining and is a new day so I hope really that everyone enjoys the weekend xxx
Maz54. Have not posted in a while but everyone has feelings. Everyone here has an unwanted diagnosis or some they love have been diagnosed. Though, I don't think anyone wanted to hurt Claire, have you thought that maybe her post may have hurt some of the other ladies and they may have cried as well? I think it is just a matter of sensitivity. Everyone here has a different experience. Since you know Claire, perhaps she should be advised to simply skip over the details that she does not want to know or just simply is not interested in. I decide to read by the headline. If I am not interested or don't care to know, I simply skip it. She should have seen stats and kept going. Whoever posted the stats needed to do that for themselves as we all cope differently. I am here to support my Mom. Stats were important to me initially. Stats are helping me to help her beat the odds. According to stats, by her health, she should have been on the way out but she is here, lively and driving us all crazy as normal. Wish I knew how to post photos so I could show you all how after a 24 hour driving trip to Florida, she laid in the beach thanking God for her existence, meeting her great grands for the first time. She thought she would never see them. Due to her feeling that she is winning the odds, this lady is feeling empowered and rejuvenated. Different strokes for different folks.
The problem with that is it's not always obvious what a post is going to contain, this comment was not under a heading saying stats, I really feel that people should be a bit more sensitive as to what they put in their posts,yes we all need to know the facts when we are ready for them, but off the cuff remarks are not helpful x
Hi Venessa and yes of course I can see that others may have been in tears at her post -obviously it raised a lot of heated feelings which of course I entirely understand!
What I felt was that some of the replies were a little too personal and that was what I was trying to convey - albeit badly it would seem!
On a lighter note how fabulous about your mum! Stories like that are inspirational to us all xxx
Good Morning. When I was first diagnosed it was whilst speaking with other ladies in the chemo suit that I realised that OV has a tendency to reoccur. I was traumatised by this. Medical staff were rather cagey. At this point I did not know about this wonderfully supportive site. The knowledge on here has been very empowering and i can now ask questions and challenge my oncologist. It takes so much strength to be positive and fight this disease. I think the point Claire was making was someone newly diagnosed reading things about recurrence 'no matter what the stage' may be traumatised by this. We are all individual and i have met LOADS of women at Stage 4 who are fighting fit 8+ years from diagnosis. Some with no recurrences. I found Claire's post to be sensitive x
I think we all react differently to situations.Some of us want to know everything and others just want to get on with it.
I told my doctors never to quote statistics .We also do not have our CA125 measured after chemo as they feel it stresses people and go by symptoms only.
I am discharged now and I feel that I need to know about OC in order to look after myself and I find this quite daunting.
I have campaigned locally in order to allow others to be aware of this disease and this is how I cope.But I never forget that I have OC.
Thank you for taking the time to put Claire's point if view. The problem with Claire's post was that she tried to impose her own viewpoint on all of us in quite a dogmatic way.
I quote, "so please keep your opinions on statements and so called statistics of recurrences to yourself." I think most will agree, that is an order, not an opinion.
I am truly sorry Claire is now upset. I think almost everybody who replied trod carefully and tried to diplomatically make suggestions they thought would help her, because she sounded so angry.
Thank you Sandra - like I say it's often difficult to put across what we mean through the written word. I'm sure no one set out purposely to upset anyone - god knows we've all got enough on our plates!
Me too Sandra - I'm really at the end of my tether and am sat in tears - had joined the group hug and thought we'd all moved on and harmony had been restored but it would seem not the case.
I'm so so sorry about all this - never set out to offend anyone but obviously I'm just making things worse. No one's the villain of anything - just a whole lot of misunderstanding. Xxx
Think I'll give the site a break for a while - it's all got a bit out of hand. Am frightened of causing offense to anyone and have already lost a bit confidence recently since I stopped work do need to do a bit of self preservation. Sending you a big hug and a virtual tissue to dry the tears. Sandra xx
Me too - I've already decided to bow out of this after today. I also feel that I can't post anything now for fear it's all going to be taken out of context; a terrible pity as I'm back in active treatment for the 3rd time and will need support I'm sure; seriously will consider joining elsewhere now.
But thank you for your reply and I mean that Sandra Xxx
Hi Maz I'm really sorry to hear that Claire was upset after the reaction to her post and do not doubt she is the kind and supportive person you have described. The problem is that when you're on a forum you remain faceless and judged by your words. As I said in my response to her original post this has caused unneccessary upset
When I first read the post I was very upset and angry but thankfully had the self control not to post a response at that time as I know of the impact of words on others around me. I'm sure reading through the thread it will have lessons for all hopefully including Claire.
We should be able to come on to this safe place to share experiences and knowledge, rant and rave about our cancer, medical team, friends and dare I say precious loved ones if that's what is on our minds BUT never ever should we be so direct and angry with each other. That makes me sad. I think there is a filter that we need to apply and ask ourselves will this offend or hurt anyone before hitting post. It's inevitable that we will end up reading something we didn't want to on a site like this as we are all at difference stages in our cancer journey.
What has come through very strongly is that this wonderful site is a lifeline to most and it's the place we come to for comfort, support, reassurance, inspiration and knowledge amongst other things. I've seen others get advice on treatment options when their own Oncologist has run out of ideas How amazing is that !
Let's all agree that if we have any doubts about what we are writing to pause before hitting that al important post button I've actually sat here with this draft for at least 5 mins lol
Thank you Julie and yes I wholeheartedly agree with you! As I've said the only reason I put a post at all is because I felt that one or two of those responses were way too personal; I would have posted in defence of anyone regardless of whether I knew them or not.
You're quite right in that we need to be mindful of how things may hurt others; we're all here for the same aim xxx
Maz I think it was a positive thing that you know Claire and could add something personal. Kathy - katmal has started a group hug so peace and harmony have been restored 😀
I woke up this morning thinking about Claire as last night I read back some of her old posts just to get to know her. I realised that this was not the angry sounding Claire that sparked all those replies including mine and planned to add another reply today. Now you have painted a picture of a different person . I am really sorry if what I said upset her but I guess i just wanted to get across how upset I was reading her post. I do try to be careful when I write a post and I hope I follow the guidelines. We must all try to be careful about the sensitivities of others and if we come across a post that upsets us we should just move on. I should have followed my advice yesterday and moved on but my own situation right now is too fragile not to let it be known then and there how the post affected me. I just needed reassurance that I can speak about any aspect of my disease without being admonished .
We are all caring women on this forum and that includes Claire and we try to help each other and cheer each other along . This forum has been my lifeline so many times. I log on every day and read all the posts. As someone suggested a group hug is called for . I will send a personal reply to Claire as I hate to hear she is upset .
I think Claire has been treated badly on here with some of the replies, some posters just seem to see how many ` likes` they can get on there posts without a doubt.
'....some posters just seem to see how many 'likes' they can get on there (sic) posts without a doubt'.
++++++++++++++
If there was a 'dislike' facility, I would put it to good use with your post. Who, on a forum offering a lifeline to women suffering from the most heinous disease that is Ovarian Cancer, would care less how many 'likes' they get?
For the record, I don't think Claire has been 'treated badly' at all considering the tone of her post. Had other members responded in kind, as is their right to do, I should imagine she would be feeling far worse than she does today.
Instead, the usual kindness and warmth blended with common sense took over with much consideration given to Claire's feelings. The lovely Kathy has even started another thread to smooth the way and offer the hand of friendship in the spirit of which this forum was intended.
Hi Debs and like you I'm not fully understanding the wanting likes on posts business!
I'm afraid I have to comment on a couple of issues you raise and then I won't comment any further on this matter - it's time to move on. Yes I'm sure Claire may have been very to the point in her post but nothing she said was directed personally at ANYONE here. To be told by more than one person that she needed anger management and counselling is one thing; to then be told that she has been stripped of all human feeling I'm afraid reads to me like a personal attack and I would go in and defend anyone subject to that!
As I think we've established if posts aren't what we would like to read then skip past them - maybe that's what some ladies should have done in this case xx
Perhaps having time to re evaluate her post, Claire might now accept that Ill thought out words often cause offence. All I've seen here today is decency and the hand of friendship offered to her, but not one word of apology for any upset she may have caused, It works both ways doesn't it.
You authored a lengthy post today in her defence which, is a very kind thing to do but then you complained that you didn't receive more replies. Perhaps those same ladies were trying to put the issue to bed? Maybe some didn't agree but thought it too petty to continue.
Despite Kathys honourable and kindly efforts, there is now an atmosphere on this once happy sanctuary and I'm afraid you are perpetuating it. Are we now to tread on eggshells for fear of asking the wrong questions? For touching on subjects that might make someone feel uncomfortable? You see, death makes me very uncomfortable and reading about the loss of friends breaks my soul, but we can't live in denial of it happening to make me feel better about being stage 4 and worrying about my future now can we?
Well I can't possibly comment on whether Claire apologises or not - not my business.
My comment about replies was sent at 7.30 this morning so yes too early for people and probably in retrospect was a daft thing to say.
I have been saying all day that everybody must and should be able to comment on whatever they feel. All I've tried to do today is bring everyone together and draw a line under this - to hear you say I'm perpetuating this discord has frankly made me cry - all I want is harmony! I'm going through active treatment myself at the moment and didn't anticipate any of this unpleasantness.
I'm really surprised at the furore Claire' s post created but must agree with those that suggested not to read certain posts would really be the best option. Ovacome usually steps in when things get personal and perhaps should really have noticed what was happening earlier.
This site has been a godsend to me but I remember how I once was castigated by a member when I made an innocuous remark that she took great offence to. I contacted Ovacome straight away as I was so shocked by this persons' unkindness.
Couldn't agree more Anne and I agree - Ovacome maybe should have stepped in when things had begun to deteriorate!
Beyond time to move on and draw a line I think xxx
We are all in the same boat otherwise we wouldnt be on this forum unfortunately we are. Certainly there will be posts that will upset others because they are in a fragile place yesterday it was Claire tomorrow it could be any other of us. It has never crossed my mind that people post to get likes. People post to get support and we help them as much as we can, I have never seen bad behaviour on this site. Perhaps if someone takes issue with a certain post it might be wiser to message that person rather than comment publically. As has been said, we all had a group hug no one was coerced into this and personally its another day and time to move on. Hugs again to all
Decided to share how I 'rationalise' stats which make me miserable: Statistics reflect the history of this disease; all of us here today are making tomorrow's history.
We all want our todays to make better history for those unfortunate ladies ahead of us who will experience this disease; the support and help we give to each other now will, I believe, be the best legacy, the best gift we can be giving them. Every extra day we can live above today's statistics, we are adding hope for those to come.
Today I sit wrapped up in a fuzzy yellow blanket with a cup of hot cocoa and my wonderful dog by my side. We are awaiting a furious tropical storm that has already passed thru 3 of the Hawaiian islands. It brought power outages and floods, landslides and downed trees. Now it is beginning to knock at the door of my little island of Oahu. We will be the next island to experience its wrath.
I have already prepared a dinner of food that does not need to be cooked as my electric stove will soon be useless . I have prepared for this storm as best as I can as I have been thru many severe storms before.. I pretty much know what to expect. So I will stay inside my cozy home with my blanket and my dog and we will ride out the storm as best as we can. I hope my son gets here before the worst of the storm as he is riding a moped home from work..
. The sky is a dark gloomy grey and the rain has just started to fall but it is not at it's full potential yet. That will come soon. The palm trees are whipping around like a rag doll in a mad dog's mouth. It will get worse as the night falls. It feels a bit sad and gloomy. But even from the sad and gloom good things will also come
The artesian wells in the mountains will be replenished with fresh water to drink and to bathe in. The dry parched grass in the yard will soon be the most beautiful emerald green that you could ever imagine and my flowers will have so many more blossoms . Even the air will be different. It will be washed clean of dust and pollen and volcano ash. It will smell so fresh and clean. There will even be a rainbow after the storm has passed and it will bring hope of sunshine. My flowers will be opening up to the rays of a beautiful new dawn.
The dawn will be bursting forth with a bright new sunny day and I will find new hope for the future and I will be happy and dance and sing in the sunlight until the next storm comes. But I will not worry about the next storm as I will be prepared for It as I have been so many times before . I will get thru it to a new day. I will pull the blanket up a little tighter.
Life is just like this storm. It has its good and bad sides and we must learn from both sides in order to protect and prepare ourselves for whatever comes in the future. It's time for a new day.
Let the sun shine in.
Wishing all of you lots of sunny days and the mildest of storms.................
This will be my last post on this issue. I agree completely with Dollysmum and some of the other ladies. Claire has a voice of her own and could have simply come on here and apologized to anyone she might have offended with her comments. How many times in life had we all realized we said something in the wrong way and needed to apologize and move on. Simple. That would have put everything incto perspective. We are all here to support one another. This site has been a life saver for so many women. I have have been supported by many of the women here. I will not come off since I don't think one persons issues should stop me from supporting or being of support but I do think we have bigger fish to fry . I do hope Claire is fine in any case.
Well said Venessabr: . It is time to let the storm pass and let the sun return to this community . Everyone has the right to their own opinion and I shall not judge anyone. Cancer is an angry and depressing disease and it can bring out both the best and worst in all who deal with it. It makes us angry and it makes us sad or depressed and this sometimes can show up in how we express ourselves or it can be taken the wrong way. It is the disease that makes us angry. I think everything that can be said has already been said.. Le it be done. It is time to bring back the love and the hope and the support that this community is so good at. Let us End the storm now. I think a rainbow is ready to bless the sky again. Peace and love to all. Bring on the sun.
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Very Sad
A VERY BAD NEWS DAY .............
Thanks for yr replies
