Ovarian Cancer Community
This has to be resolved .....
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This patient support community is for discussions relating to ovarian cancer, biopsy, chemotherapy, clinical trials, genetics, hysterectomy, immunotherapy, radiation therapy, screening, and staging.

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This has to be resolved .....

.....once and for all! I feel that we are not listening somehow. I dont feel comfortable keep posting on top of people who maybe dont want us here, its not fair on them!

The problem is there is no absolute dichotomy between those who have cancer and those who dont until the diagnosis, by which time friendships are struck and people have an overwhelming need to help others! I am not sure how 2 seperate groups would work because its a journey that goes through stages. There are those who just have cysts but there are some that are more likely to be cancerous than others. There are those who have Cancer but also at different stages. Pre surgery we all have the potential to have cancer and all feel very scared and alone. If those who dont have cancer leave the site there is no-one to help and support the people who are new to the site and are not yet diagnosed. However if they stay it is a constant reminder to those who have not been so lucky. People who do have OC should not have to wade through hundreds of "what do I wear" threads to get to some helpfull advice and support about chemo side effects and the such. On the other hand practical advice is so important to those recovering from surgery. In many respects there are 3 groups of people. Those with Cancer, those without cancer and those who dont know yet. Within those groups there are also different sub groups! I have a complex 20cm and elevated ca 125 and I felt bitter because my best friend turned out to have a 4cm simple. To me her cyst is trivial yet to someone already diagnosed with OC my cyst is trivial.

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21 Comments
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What I am trying to say is that the whole thing is a catch 22. When I first came on this site the first person to respond to me was Nat. Nat has cancer and I am not diagnosed but what we BOTH had in common was a HUGE cyst. We were able to share how ridiculous we felt at having a water melon in our belly and not realising. People don't fit into neat little groups. How do we go about deciding who should be in which group, who belongs and who doesn't and what is relevant to ask and what isn't.

However tickle although I admire honesty and being upfront your response to an earlier post was discusting. You should be ashamed lady!

Anna x
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Hi Anna!

Are you having a bad day?

I went on the OvCa site earlier and read about experiences with Granulosa Cell Tumour - scared the bejesus out of me so skipped quickly back to here.

Yes I have had a borderline tumour (no chemo after) removed 16 years ago and it was 16x14cms.  I too felt daft not knowing it was there.  But did I feel guilty about not going through chemo? No - I felt bloody lucky.  

Now it has happened again and I could scream from the rooftops.

Now I'm hoping I won't have to have chemo or radiation therapy.  Noooooo!  And yes I mull over trivial things but I'm scared.

Anyway what do you plan to wear after the surgery......

Only Joking!!
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Can I also say that it was all very confusing about me going from my local hosipal to Manchester to the cancer centre and the gyn/onc.

If it hadn't been for this site my mind would still be uneasy about it.

I know now about the wonderful skill level of gyn/oncs because of the answers to postings here and the difference it will make to my surgery.

This site is filled with all kinds of ovarian cancers, people suffering and yes people getting good news.

We are all of us looking for the very best outcome.
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HA HA HA HA HA HA HA HA HA! how perceptive of you, yep having a bad day!I KNOW how ridiculous it may sound to some but the preperation of going into hospital is making me feel sooooo scared.

I have to go clothes shoping (cringe at the irony of what I just said) for my night stuff and big knickers and the such when hubby gets home today. Somehow preparing for it all makes it more real. I keep thinking about stocking up the freezer for the boys and the beds need weeding (my job it seems), its horrible! I came on here for a bit of a rant then read the earlier post and thought nope - cant.

Im scared babe, really scared!

Anna x
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It is a shame that this has to happen, but it does every so often.  Of course it is good to clear the air on occasion.  I am glad that we do have the ovca answer site, with a gyn/onc answering the questions.  But you are right, bonds are formed and friendships made long before dx.  It is hard to just turn away from here.  You want to keep in touch and you want to share your experience in order to help the next woman along who has a similar problem.  We need to offer support and comfort to those who are taking this journey, no matter where the road leads them.  I am changed because of this site.  I have gained knowledge and friends and I don't want to loose it.  We cannot be judge and jury, we must be compassionate and caring.  We welcome all with open arms.  We cry when the dx is ovca and we rejoice when it is not.  We offer support and prayers and love to all.
~Tascha
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I know love.

I did read a posting on the Hysterectomy Association about pre-op nerves.  Apparently they melt away once you get to hospital - something about letting the nurses take over.

I hate this getting ready thing because it reminds me so much about going into hospital before having a baby.  the first time I went I was pre kids.

I also read a funny posting about HRT replacement.  Everyone was being very informative and giving excellent responses and then someone posted:

'I'm going to eat Kit-Kats instead of taking HRT.  I'll post back later when I'm 70 to let you know if I have osteoporosos (sp) or heart disease'.

I haven't laughed so much in weeks!

Take care

Ursula
xxx
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PS

I am aware that you are going in for a dermoid removal.

The hysterctomy and HRT were not meant to be directed at you.
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I found that I needed the most support before I was actually diagonsed Stage 1C, I had so many questions and was so afraid.  The time I was waiting for my pathology to come back was the time I posted the most and found the support, people's experiences and their ability to answer my nagging questions very comforting.  Now that I have actually been diagnosed I don't post that much as I now understand my situation and don't have that many questions, I do however check this site daily so that I can help women who are going through a similar experience to mine.  I can understand people's frustration with some of the posts - but we don't have to read those we don't feel are relevant to us and if we want specific support around chemotherapy and living with cancer we can post our own questions and get support in this way.  I think we need to understand that everybody's situation is unique and each person who posts here has a problem that is very worrying and real to them and we should do what we can to help them through this time.  Let's stop the bickering too - it's horrible, we need to try and be positive and supportive - also I think a lot can be misconstrued (spelling?!?) over postings as you can't hear the persons tone or see their faces things might sound more confrontational than they are.  Let's try and keep it positive and if people post irritating things let's be the bigger person and ignore it!  I did get involved in the whole nee'chee castration drama - I think I was in a bad mood and needed to vent - I regret that now.
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Well said.  Thank you...I think that sums it up perfectly.  Lately, it seems like tensions have been very high. I am sure some of the negativity of recent posters has many of us on edge, and unfortunately we have lost sight of what this forum is about.  I feel terrible about that...for all parties involved.  We seem to be lashing out against each other instead of this terrible disease.  When I first came to this forum, it was very rare to hear this kind of negativity.  There were times when people disagreed with each other, but not to this extent.  I am not sure where (or when) things went wrong, but I hope it is resolved soon.  There are many women who use this forum as part of there lifeline, regardless of what part of the journey they are on...I know I did in the beginning.  I have great respect and admiration for the women here.  I have witnessed some of the most beautiful traits of humanity right here on this forum (most recently Thuney and PainterLady)...it gives me great hope.  Don't let the few bad moments define what happens here each day.  I know we are all better than that, right??

As for me, I am ready to move on.  I am thankful for all of the help and encouragement I received here.  I remember my first days here some of the "old timers" on the forum...dian, MV (ravenlady), tascha(gatsby) and mickeyvicki...welcomed me with open arms and talked me through many of my fears.  Little by little I learned about many of the women here...Mary 53 (who turned 53 this year), AnotherKatie (little firecracker!),lawyermom, Angela(another firecracker..gotta love her),DebR, PamNYC, Sonie (to name a few)...I will cherish this time.  These women got me through my time with a lot of compassion and many laughs, and I thank you all.  I hope the same will continue to happen for those who come to this forum in the future.  God Bless all of you!!
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I would be remiss if I didn't also mention Mid(Blonde).  Although she doesn't really post here too much anymore, she is an absolute angel for working so hard on the other site.  I know I can't mention everyone, but I didn't want to miss the opportunity to throw her name in :)
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108861_tn?1227249648
No Black eyes forthcoming Cyster!  I share your vision as do several others working on a new public site for the Battalion!  The land mine brought up discussion that had to happen, again, so we could work it out, and I think we have.  Not that there will never be blow ups on any site given the situations involved, there will, but we are Battalion, we stick together and keep sight of the objective Mid referred to, shedding as much light on the Monster as we can muster!  Love you Sis!  MV
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Thankyou for all the above - between you all you have covered my reactions to some of the rather heated recent comments. I am glad people can also have this kind of reasoned discussion. And all the best Anna- maria: I though my cyst was large............
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I don
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Thnak you for your kind words it means alot to me.
What makes me happy is seeing you all being happy and enjoying the lighter site.
again thank you.
Mid from OZ
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Avatar_f_tn
Hello....anyone still wanting to blacken my eyes?

Hmm...I guess I placed a land mine right there in the open and it went off....somehow I don't think any damage at all was done..quite the contrary...I think bonds were strengthened and confidence was re-enforced.  
I am the oldest of five....I am the mother of 7...(I finally can get along with a mother-in-law who tried to get rid of me for the first 17 years of marriage to her oldest son) and instinctivly I stand between an injured anything and it's attacker...it's instinctive.  I will always do that and with a vengence. I am compassionate to a fault...nobody stomps on an underdog or a person hurting  or scared or sick or alone or....I could go on and on...but not on my watch.  We all need eachother because we each bring our own uniqueness to the table....we each have something that only we can offer...our needs do change, however.
Perhaps the new site could have more than one room....I know there are more women who do have cancer who want to have a discussion with women in the same situation... There are times when  a woman facing the reality of this monster being part of her life from now until it is over needs a place to go where only seriousness and reality lives...she can always come to this site for love and compassion and laughter...both rooms need to be available.  And the one room should be for those with malignant situations....I am just thinking out loud....I do think it is needed, but I do know we need a place for all to meet....as was said earlier, we all need eachother....the 1% is no exception.  Like I said....just thinking out loud.
I am glad , in a strange way,  the mine blew up....we do need to address this reality....I do cherish my relationship with each and everyone here....I would stand between any one of you and any attacker....
Peace.
dian
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Just a simple statement of truth:  I love each and everyone of you!
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108861_tn?1227249648
Hi Fab, thank you for all you have done for your Cysters!  You are so wise we will miss you!  I understand if you need to move on, we are just being selfish in keeping you here but if its time, its time.  You are always welcome Fab!  Lotsa Love!!!!  MV
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Look....those who are diagnosed "malignant" will agree we were all scared just as those diagnosed "benign"....still, those who were diagnosed "malignant" never had that fear erased or eliminated....for the rest of our lives that "fear" lives...that difference needs to be acknowledged....we get no relief....
There in lies the difference.  I am okay....I was diagnosed early....still I do deal with the reality that this monster just might be hiding somewhere...to pop up again...my childten are grown but I want to know my grandchildren and I don't want some other woman sharing the winter years with my husband...I want that for myself (I put up with him when he was a jerk and I simply must reap the rewards)....geeze..sometimes I make myself sick....oh well...lets pull together to find a way to fill all our needs...we can do it.
Night girls..
Peace.
dian
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You really are something else!

Anna x
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Love the way you tell it like it is!

I agree with you that the OC DX sisters need an EXTRA room. Just next door, so they can pop in & see us here anytime, if & when they feel like it.

Love,  R x x
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Dian...
I've been waiting for the other shoe to drop for a very long time now.  As "calm" as things are after this most recent surgery, certain things will never be the same.  Today is our 28th anniversary.  My husband and I have been together since the very beginning of the whole ovca experience.  My biggest fear is that I won't have the chance to grow old with him...see our sons with their own families.  I don't think the fear of a recurrence will ever completely go away.  Baldness, thinness nausea, abdominal scars...they're all very easy to recognize.  Other remnants are invisible to the eye but still remain.
peace,
Anne
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