Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

I agree, this is a bittersweet place to be. We all know that at some point in the future we'll no longer be a part of this great little supportive community.

Ok, so for those who feel comfortable with this, unless anyone has a better idea, could we choose two or more "buddies" to share our info with? @WrenNatsworthy and I are now connected via Facebook and @LuciaPillson has shared her real name and city with me but she isn't on any SM.

What a good idea @TwigTheWonderKid I was trying to think how we could achieve this. One of the issues we have to be aware of is people's wish for privacy.
I think I know how I'll be when my illness progresses . But it could be that I will want just close family/friends. Having just one \ two people of your choosing you can open up to privately would help

I'm happy to be connected with everyone on FB 😊

@Florsilvestredelcampo it's probably incredibly selfish but I found it very hard when messages dried up from mowly and we had little idea what was happening. It was awful, but somehow comforting, that someone (I think perhaps Tilllly?) knew her name and we were able to find her obituary. It's quite a journey we are all on together and it's hard to process when someone just disappears.

Obviously everyone is going to have different feelings about this but I think this is a good solution for those of us who do want to share.

I'll pm you. I don't post a lot on FB but I'm happy to be connected with others on the thread who are also happy to have their secret identities revealed.

Oh I love new Facebook friends. I
While the anonymity of this thread helps it also blows my mind that I might be walking past any of you in the street without knowing.
I'll send pms

I had Mowly's details (under a different username) and those of another lovely MN not on this thread but with stage 4 pancreatic cancer from breast originally who died. It is useful to know people's wishes as people do ask for details and I would always say no unless it was someone also with stage 4 who was close before but it is a difficult call. The one I had her name, location, children's names and e-mail and it was through her not replying I knew she had passed then you have to search for a funeral notice which I found in German. I always worry about someone being alone or kids left without help but its a hard balance as some people want privacy and you don't want to intrude either. I think its a lovely idea for people to link together.

I’m on Facebook and happy to be part of a group. We can have a private group - could throw up surprises x

Absolutely, normally the anonymity of this forum is sacrosanct but we all share a unique connection and I think that makes a big difference.

If anyone wants to connect with me via FB then drop me a PM here. I don't really post on there anymore as I never feel I've got anything interesting to talk about but I do check in regularly and am planning on memorialising my page when I die.

I rarely post on this thread (honestly because I'm currently stable and the future terrifies me, I'm incurable) but I browse regularly. I find every person who leaves us a real blow and Mowly and Bridget both caused me tears.

I am on SM and would be happy to be in any FB group/chain for information purposes.

Tilly I deeply hope you are still with us and that you are getting the oxygen and rest you need.

Hi everyone I'm happy to be part of a private Facebook group also.
I find it awful but comforting to know there are people like you that have some understanding how truly awful it is to be in this situation.

I'm so glad you ladies have decided to do this. I've been pondering whether to post or not. I'm an old timer from the cancer threads and we all moved onto a secret Facebook group. When we lost Lesley / Twitter Queen / Bee (plus sadly a few others), we all knew from fb and that did give us great comfort. Plus it allowed us to come here and let others know of their passing.

Looks like I'm going to be back in for a blood transfusion tomorrow.

@WrenNatsworthy Will you have to stay in overnight?

No idea, they admitted me last time so I expect so. Gah.

Was popping in quick before bed to see if @Tilllly had come through with an update post that she was feeling better and everything was under control and improving. Very sad to see still not updates, but I hope if she can't write then at least read and know she is loved.

Still in hospital as I keep having random fever spikes. Its all very boring at this point and I want to go home. Friday seems logical at this point but who knows.

Would anyone be interested in a Facebook group entirely private. Made secret from searching, if anyone is worried about privacy. Where we can connect in real life? I'd be happy to set that up, add people as friends, insert into group and then unfriend if needed but then we're in a group on another form of social media? Or I could make it searchable but only for a set period?

It's just an idea

I'm a bit worried that if everyone's in a FB group that no-one will post here any more, have seen this happen online when your friends all move to a different platform and you lose them.

I am interested in a facebook group, but also share @LuciaPillson concerns. Apart from her not being on Facebook we need to keep this thread going so people new to this situation can join.

I just like the idea of facebook because it’s been about the only positive of this situation- properly meeting new people and making new friends.

Do we have this thread about the cancers / humour about them and Facebook a little more about other things happening in life?
Have a rule that we must commit to post on this thread regularly if we join the Facebook group?

Thibk I’ll be posting for sure - my Ca125 is over 800. I’m well, but presumably inside me is not.

I echo @LuciaPillson's concerns. I'm happy to connect with people on FB but I don't use it that much. Personally I prefer to keep this group going as is and not separate off into a new FB group which not everyone will be able to use as not everyone is on FB. Just my thoughts though, and nothing to stop others from forming a FB group if they wish x

I totally agree with @LuciaPillson . The primary aim of connecting on Facebook should be to enable others to know what is happening with us when we reach the end of the road but I don't think it should be a replacement for this thread.

No worries it was just an idea :)

I'm happy to be friends on FB, but I think I'd post less in a private group than here. I vote no private group but would happily connect with all of you.

I'm in SDEC, been cannulated. Waiting for my blood transfusion to arrive. Packed bag for a stay (no fishy flannel but lots of earplugs). Let's see where I end up.

They let me go home! Flabbergasted. My hb had climbed to 76 since yesterday. One bag of blood then home.