Stopping Treatment

Thanks everyone for your replies and understanding. Still struggling with the new reality and just ‘how to be’ in this situation. Everything is happening so fast from being fast tracked for PIP to meeting the hospice CNS. It has been a lot to process.

It really helps to talk to others in a similar position. I still think that it feels like I have moved into a different group now and that I would feel better if there was a separate forum so that we could discuss this journey. I feel like I don’t want to adversely influence those who are still in treatment.

Anyway thanks again and I am sure I will be back for more support as I navigate this.

Positive hugs to everyone (((()))

Hi Cathyg

Everything you describe about the group you seek, to discuss these things openly, is exactly how I regard THIS group.  I really think this is the group.  It's what it aims to provide. 

People have posted about a lot more dodgy things in here, than stopping treatment.  

That's why I post in here, to talk to like minded and supportive people.  I'm glad you've found it too.  

Best Wishes!

Hi Cathyg  I have thought about what you and Puddock have said about you both no longer feeling that this group is the right space for you. I have also taken on board the comments that have been made about my suggestion about the room, and agree with what Mmum has said, that it still shows in the main thread, so is still not separate from the forum. As a champ, I always want every member to feel that they can post safely. I feel that I am not able to come up with an answer to this, so I feel like I am letting you down. I have asked my fellow champs and admin if they have any suggestions. I just didn’t want you thinking I hadn’t listened, I have, I am just stuck on what else to suggest. 
I will update you once I have any answers. 

Awww don't feel like that Chelle  it's outside your responsibility.  You're being supportive and caring.

Hi Chelle

Bless you! as Mmum says, it's outside your responsibility to come up with a solution.

My suggestion would be to add, under the 'chat', diagnosis and treatment, say hello banners, to add another banner for those who have stopped treatment. Not sure what it should be called.... maybe 'The Road Less Travelled'. People can then choose whether to read the posts in it, or scroll past. It keeps the posts separate from the other ones.

This is a really good forum to be in, and I'm really grateful to you, and all the others who post in it, and the moderators, for keeping it as a safe supportive space for all of us. And thanks to Cathyg for starting this discussion!

xxxx Kate

Hi Kate, I can't quite follow the reasoning either. You can start a new thread any time you want. No one is going to be swayed or influenced by those who have decided to stop treatment. I mean almost everyone will have to make that choice at some stage but making that decision is just a facet of living with incurable cancer after all which is what this forum is about. Everyone is interested in end of life issues even if some people have decided to delay it for as long as they can. Surely, the same emotions, practical issues and even spiritual aspects apply to everyone on this forum.

I have spoken to the team, and it is thought that the incurables is the place where you will get the best peer support. This is something that has come up before, and we did trial another group, but there wasn’t any activity in it so it was decided to close that, and for people to post here in the incurables. It is something that will indeed affect the majority of us eventually, so it is good to talk about it. I know the team are aware of everyone’s comments here, and it will be something they will be looking at the future, but it won’t be a quick fix. 

Stopped last October so I’d feel ok for Christmas. Now 83. Glad I did although dying soon, with typical sign of lasti stage, swelling painful calf. Worst bit is that food tastes bad 

Hi  Doug, and a very warm welcome to our friendly little family, and many thanks for sharing your wishes, I feel very humbled you chose to do so, my friend, do you take any pain relief Doug? and I sincerely hope you get your wish and feel ok over the holidays.it would be lovely to hear from you again.

Eddie  

Morphine and voltarol. My biggest issue is food tastes horrible, sandy, and I’m a foods. Worse than last year when I was having treatment, ie chemo. Thanks.