Getting discouraged

[Nesie237]

I have frequently responded to people on a number of subjects, especially when people say they're getting no responses. I'm trying to offer words of encouragement, advice when I've had similar experiences. I don't think anyone writes posts asking for a solution. And I don't give one. I don't have solutions. Mostly commonalities. But most of the time I don't get a reply. I find this discouraging. So I may not keep posting. I am a nurse with lots of ICU and recovery room experience, I have IBS, I've had breast and ovarian cancer, even a stroke. And I have fibromyalgia, so if anyone wants to ask about my experiences, feel free. Otherwise, I think I'll stop participating for the most part.

[Pigletokeeffe]

Hi you sound like someone who could help folk with your experiences so please don't give up. I rarely join in myself but find it interesting to hear how people cope with their ever changing circumstances. Some times if I'm honest I find it hard to deal with mentally as none of us know when it may be us again needing help. I am 13 months in remission NED and beginning to feel more like my pre cancer self... But you can never take things for granted and think it won't come back. If it does then we need all the encouragement from warriors like yourself to help us take courage and carry on. Keep up your words of wisdom you don't know who it may be helping even if they don't reply.😀

[Nesie237 in reply to Pigletokeeffe]

Thanks for your words. I guess I'll keep putting my 2 cents in.

It is a very insecure position to be in, nothing to be done about it, to wonder if it will come back somewhere. I feel like a sitting duck. And I can't shoot back, just deal with whatever happens.

What is NED? I don't think I've heard that term. Thanks again, Nesie 237

[Pigletokeeffe in reply to Nesie237]

Ah NED is no evidence of disease.

[Nesie237]

Excellent! Best wishes for that to continue. Nesie 237

[lesleysage]

You are right, Nessie - all of us respond to receiving kindness, consideration, 'advice', sharing of experiences etc differently, even when we have asked for it. Please don't let those who choose, for whatever reason, not to reply to your giving of thoughts, kindness etc, make yu want to close off from sharing - that way, they are influencing how you are, naturally, and that is hugely sad for the rest of us who can read and use the shared information to our own best purpose.

There are many more days when I haven't time, cannot immediately relate to what is being shared, have nothing valuable to give to the situation, notice that many others are sharing what I would have shared etc. etc. so I make no contribution. When I do take the time to contribute and receive a reply, it is a bonus and I feel an additional 'kick' of warmth in my day and when none come in, I accept that in that person's world at this moment, other parts of life are taking over. I agree with 'Piglet' (love that and wish I'd thought of giving it to myself as it is most definitely my deepest trigger...anxiety that runs away with my mind!) that, please, please don't let your experience, both personal and professional, prevent you from sharing on those days when you feel you can and want to.

Hope your day is good - where I am, the overnight rain has subsides and morning sun peaking through. Lesley

[Pigletokeeffe in reply to lesleysage]

Haha I played piglet in a school play many years ago and it kinda stuck!!

[lesleysage in reply to Pigletokeeffe]

My family called me piglet - our son is pooh bear, husband is eyeore and daughter is tigger!

L xx

[Nesie237 in reply to lesleysage]

I like that. When my husband was alive, we were Mr. and Mrs. Bear. I always liked Pooh. He has character. Nesie 237

[Nesie237 in reply to lesleysage]

Well, thank you, also. You are very kind. I guess I'll hang in there and say something if I think it might be helpful. It might help someone, or just me, for trying to help. It is nice to hear back from someone, of course. I like the Piglet name too. Mine is just a nickname for my actual name, Denese. Not too exciting, but that's me.

It's 1 a.m. Here, the days are getting shorter. By December it will be dark by 4:30 or so. It's still in the '80's and even '90's for now. The weather changes to winter about Halloween every year. No four seasons where I live. On the other hand, there are people at the pool in February. Crazy. I guess I'll try for some sleep, full day Thursday, beginning to end. Thanks for the encouragement, Lesley, Nesie 237

[lesleysage]

I think I'd have chosen 'Nesie' in preference to the full Denese too. You must be in the US or Canada - or central or southern Americas? Am very glad you'll hang on in here as we never know what our 'ramblings to each other' can help with ... how they are like pebbles in a still pond and ripple outwards on and on and on...

Hope your sleep is good.....we are just off shopping - in the sunshine after heavy rain overnight; always pleasing when the weather does it this way round!

Lesley

[Nesie237 in reply to lesleysage]

Yes, I live in central California. It's either hot or cold, rarely temperate. Do you live in England?

My family always called me Nesie, they still do, except my mom. She died nearly 2 years ago, just as I was starting to recover from chemo. She was 91, had a kind of tough life with my father. She lived 20 years longer than he did. Clean living I think.

Enjoy your shopping. I'm glad you're having some sunshine. Enjoy it, Nesie

[Hidden]

Hi Nesie 237

I am really sorry you have experienced a lack of replies, have your posts gone into cyberspace somehow. I always try to answer as many as possible. I know Daisies and Miss Fitz also did when they were able. There are some ladies on here who observe but do not post and that is their decision and also maybe their loss. I agree we dont have solutions just support for each other and perhaps those who dont post do receive some benefit from the site and if so that is good. I do apologise if I have missed some of your posts, I hope you are doing okay at the moment and please do come back and ask about any issue you have with treatment or feelings etc and I am sure we will be of help to you. There is no need to feel so alone. I wont be around next week but will be online the week after. Sending you very kind thoughts and a hug

[Nesie237]

Hi Suzuki, I got some replies yesterday and feel better. Maybe I was being selfish. The world does not revolve around me. People have their things to deal with, just as I do. I hope something I say helps someone, if only to help express something they feel too. It's hard to ask for help, no matter where you are. Nesie 237

[Hidden]

I agree with you it is hard to ask for help when we have always been so independent but we learn. There is an American Cancer Society in US, I discovered this from here for my cousin whose daughter has sarcoma. They live in Boston and couldnt access a drug that was only made a few blocks from them. So they got support from there as well, perhaps it might be worth asking at your hospital if there is a branch near you. Sometimes it helps to speak with people in person and its also confidential. They would also assist you with any benefits you may be entitled to.

[Nesie237 in reply to Hidden]

Thanks, Suzuki. I am past my treatment. Right now I'm getting follow up care, scans, visits, blood work.

The ACS has a pretty big presence here, even in the cancer center in my little town, which is where I had chemo. I don't need anything right now.

I was talking about the many people that I had written to not replying, I felt kind of useless I suppose. But people have their own stuff to deal with. I need to be kinder and more understanding. Thank you for your words and reply, Nesie 237

[Caroles1]

Hi Nesie,

I'm so sorry this has come over to you this, I can only speak for myself in as far as I only comment on things I feel I can help with.

I don't check the posts every day,sometimes if I'm having a bad day,I can't always cope with the c word or anything to do with it,so I go silent.

You sound like you have valuable advice to give and it would be a sorry day if people like you leave,

Regards,

Carole xxx

[Nesie237]

No, I think I was just feeling bad. I'm ok now. I won't leave., maybe just not let myself get too involved.

Unfortunately, or however you see it, I find it more helpful to say the things I fear right out loud. I don't want them to have any more power over me than they do. And I am not brave. I'm a chicken, sometimes a whiny chicken. I hate that. Thanks, Carole, Nesie 237

[IrishMollyO]

Hi Nesie

I have only just read your post and replies. I was sad to read from the first post that you would give up on the site but as the replies went on you were changing your mind.

I always make it my business to acknowledge every single reply I get to my posts. I go on the site every day but will only contribute if I have some extra useful piece of information. A lot of the time a woman's experience is so far removed from mine ,that I would not have anything useful to say. Also there are times when I simply run out of time.

Nesie, I'm glad you decided to stay. Everyone's contribution is important. Take care

XXX

[Nesie237]

Thanks, MollyO, yes, I guess I'll stick around and participate. Who knows? Maybe I can be helpful. I've certainly have had a lot of experience in things going terribly wrong. Way too much, but others have more. At present, I'm pretty healthy, so I must count my blessings. I agree that everyone's contribution is important. You take care also, hugs, Nesie 237, my alias

[Damelza]

Nesie, I am sorry that you feel that way, I know that any time I have posted you have replied and a lot of times I have not. I do really appreciate your imput as we are in the same boat.. You always have something valuable to say, and I hope that you keep posting...

Thank you Nesie (hugs)

Best wishes

D

[Nesie237 in reply to Damelza]

I think I've gotten over that. It was getting frustrating for awhile. I'm glad if I've been of some help to you. Hugs back to you across the land and ocean, Nesie237

[Damelza in reply to Nesie237]

Oh I am so glad Nesie. Please dont take it personally if I dont respond, sometimes I feel so bad when I read how kind and supportive you ladies are I cry so much.. thanks again

[Nesie237]

Don't worry about it. It's nice that you feel supported and feel somewhat understood. Believe me, I understand the crying. I have clinical depression. It's not going away. Take care of yourself, Nesie 237

[airfemale]

Hi I know exactly what you mean. Sometimes I have left thoughtful replies or posts to have one person respond or no one. I just thought may be because I live in Australia that I don't know anyone because everyone else gets to meet in a coffee morning. I have mostly given up posting and replying. I felt a bit cheesed off and alone which is the whole thing this disesase makes you feel. So to another traveller I will certainly acknowledge and reply if you feel this way. Lots of love Sharon

[Nesie237]

I live in California. I don't think it matters where you love. It's connecting that matters. Take care, hugs, Nesie 237

[Nesie237 in reply to Nesie237]

I meant where you live, not love. Hugs, coffee sharing, Nesie 237

[LittleSan]

Hi Nesie, I suspect that some posts are getting lost in cyberspace and also there are peaks and troughs in how many people are in the site at any given time. I personally try to read posts most days but don't always have time to reply to folk as I have a lot going on with sick relatives at the moment. It certainly isn't lack of interest or empathy. I sometimes feel guilty for not responding but there's no room for guilt in this forum.

I do hope you now have reassurance and feel supported - I know how important that is.

Wishing you love and strength.

Sandra x

[Nesie237]

I do feel supported. Thank you for your post. It is frustrating trying to deal with your own and everyone else's issues. Thanks, Nesie 237

[Julie40]

Nesie I dip in and out of here and usually reply in a batch. When I read your post it jogged my memory and I had a look at your profile.

I think I know what the problem is and why you haven't had responses to your contribution. You are posting it as a new post rather than a reply to the person that you are supporting. If you read through your last few posts you will see that they are on your own profile rather than on the original post from the individual. Hopefully this makes sense.

I would say that is the reason that you haven't had anyone reply to you. Your support and advice will always be welcome and appreciated especially with your background so please don't be discouraged you may just need to look at how you are replying. Shout if you need me to help xo

[Nesie237]

I don't understand. If I follow the thread from a post to reply to that specifically, wouldn't that mean that the sender would receive the reply?

The only two posts I've put out lone were my original story and then my frustration at not getting replies. What do you think? Nesie 237

[Sz123 in reply to Nesie237]

Hi Nesie and all

Just a question is it common for recurrance to happen just in one year after treatment?

[Nesie237]

Sz123Sorry, I lost the thread of what we were talking about. Would you refresh my memory? Nesie237