What we say to each other

So what do you suggest we say?

Just trying to keep things as positive as possible, give someone a much needed lift. I'm not great today, but still trying to believe I can do this. Only on first cycle of what I think is a tough regime, so expecting things to get worse tbh

I think comments made with the best of intention, are helpful to someone..

Ditto. We must all take as much positivity from where we can. 

I think there's a difference in someone currently or has previously had treatment providing reassurance to members, especially new members.  We all know deep down we will  have a very unique experience/reaction to the treatment but people come on anonymous forums looking for reassurance and positivity.  It's not helpful to  say "the treatment will completely floor you, make you feel so ill that you want to pack it in" or "you might not get through this ".  

I know it's upsetting when in real world people trivialise your treatment/diagnosis but it's very important here we are a safe space to listen to their fears and provide reassurance xx

Hello,

I was terrified when I was diagnosed and needed people telling me I could do it! If people are coming on here they are doing so because they need support,  we are all going thru it. Chemo is difficult,  nobody is denying that. Nobody can tell anyone how to be or feel, we can only advise from our own experiences. 

Julie x

Jacala said:

So what do you suggest we say?

I suggest we say, "Chemo may not be as bad as it is said to be," which is very different to asserting that it isn't. 

I also suggest that whatever we say, we should not assume anything blindly.

I come on here looking for people with same cancer as me, hoping to see they are a bit further on than me and letting us know that they are near end of treatment. I have needed everything they can give you and still getting treatment since my diagnosis January 2021. When I finish my kadcyla in June … yes I can consider myself finished but I won’t be, I will still have letrozole and yearly mammograms and anxiety. I have found everything tough but still keep going. I actually don’t like if I get texts saying “ you can do this” or “your a tough cookie” or “ have you not finished yet” and so on. It doesn’t help me. How do these people know! 

I guess all we can really say is "this was my experience".  When i first came to the forums I had been told I would have to have a mastectomy.  I couldn't for a second imagine how I could possibly be expected to undergo something like that.  I remember  the post that helped change things.  A kind woman posted that she had found it straight forward, the pain was manageable and she didn't feel devastated by it.  She gave me a story of her experience that helped me see something I thought impossible was possible.  It really helped me to walk through the hospital doors on the day of my operation.  Now my experience was more difficult than that, but I don't think it is helpful for me to go into this if she is looking for information.  I think it is helpful to read someone posting that their experience of chemo was not as bad as they thought or that they managed to find the strength to put one foot in front of the other.  We will all wish that for any woman coming here I think.  I don't thing anyone coming here will read something positive and then expect they will have that same positive experience, but it gives hope and this matters more than anything when you first try to find women who have gone before you.  This forum and the women here have kept me going.  Every story good and bad has helped me no end.  I am very grateful to those who tell the stories about this strange world.  xx

When I first got my diagnosis it really got to me when people said  the ‘your strong’ and ‘you’ll beat this’. Nobody knew what my treatment was going to be like. Not on here. I appreciate the honesty of those further along. Best thing I heard was from my surgeon and BCN ‘we are going to do everything to get you through this’.