I thought I would start a conversation here as I keep seeing people joining but everybody is very quiet.
So I wondered how do you keep people up to date on you? Did you tell anybody? Do you have WhatsApp groups to keep friends/family informed? Do you do announcements on social media? Do you wait for that dreaded questions with the emphasise on 'how are you'?
Do you find you get support from friends? Or have they dropped to clanger comments along the way? Do you go to support groups.
I spoke to one of my team last week and he said he got the feeling that I was quite isolated and he was very right. So I wondered what you all do.
Chocolate biscuit to the first replier
There are no perfect people, only perfect intentions
I am quite new to all this... 3 weeks in and a struggle for diagnosis but fear of CUP (Cancer of unknown primary)
I started with 'family threads' to keep people updated but that went tits up because I kept getting angry at how some (most ) people responded. I then copied letters and sent them around but that also went tits up as everyone started second guessing and diagnosing me which again made me frustrated and angry. From there I tell the odd person and copy and paste to them (in the correct order of importance because they get arsey if I tell someone I shouldn't first)
Personally now.... I find isolation is probably easier in a way. I am now going to take a route of avoiding people that say stupid things and look for support in people that know what it is like.
I believe I am snappy, frustrated, angry, anxious and downright rude when people say things like "get some sun and you will feel better", "well you look better than you did yesterday", are you sure you read it right"? "My family member had cancer and it wasn't like that" "Do your chores little and often if you cannot cope" "You shouldn't have got a dog" ........ Oh it goes on.. lol
Anyway... my way forward is to avoid the majority and find them that make me smile instead of cry.
I hope you find a way to end your isolation but in a way that is positive to you. Smiling and laughing may not fix this but its a good medicine.
p.s... Im not a broadcast on social media type person... I am more of a "mind your own business" type person .
Sending hugs and well wishes. xx
Hi northern gypsy and welcome to the group and I'm glad to see you've settled in and are able to post, you'll find on here that everyone listens and no one judges simple because we understand what each other is going through.
I like your post it seems you know that
and have found the ones who do!
Maybe you should send this message out loud and clear
But please keep posting here it's a safe place to let off steam, have a good old rant and rave or just come on for a chat with people who do understand and will only give good advice, help and support when you need it.
and Ginajsy I'm sorry to see that you feel isolated is there anything we can do to help you along, you've been giving out lots of help and support for a long time think it's about time we all repaid the favour, keep your chin up.
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Hi Northern Gypsy
Hello and welcome. Ah ha here is your chocolate biccy, the chips might have melted a little bit.
Sorry to find yourself here and in such frustrating circumstances that they have not found a primary. It's hard enough to explain to people about cancer, let alone when you have not got all the answers for yourself yet.
It's difficult to know what to tell people, how much to tell people for the exact reasons you have come across. People just do not know what to say and how to react. I always force myself to take a deep breathe and think before I screech at them, that before I was diagnosed, I would have been one of those well meaning people that probably said something idiotic.
I agree, maybe if it is what you want, to encourage people to do everything you did before, meals/coffee/cinema and for me to take my mind off it. If you want to talk, you will bring it up?
I hope you find it ok here to say all the things you want to say and not worry about a cliché.
Aw thank you Norther Gypsy and Bodach. I am doing ok. I think they meant talking to people in real life about it for all the reasons above. The forum is a great place and lots of support everywhere. I hope you are well Bodach.
Take care all.
I might have some more cookies if anyone else wants to have a vent. If not I will slowly eat them all
Okay I'm patiently waiting
So quickly send some over I'm getting desperate.
My friends know I am hopeless at keeping up to date with them, I forget, they forget but ultimately I am always thinking of them.
Many times I get well I am on Facebook, do you use Facebook? Its like asking a question from an alien, I am a I hate Facebook person, sadly its because I have heard so many times nasty people just being that but I also know its a good at for some to network.
I love the community it has lots of sharing of experience and knowledge but also safe as no one is judgementle, I am also dyslexic. But everyone just gets it, but some groups are very quite but it doesn't mean no ones listening but if your diagnosed young well there is a place for you all to chat and not nesscary just about the cancer but to know that there is others who understand when your having a bad day and you want the sea to open and shallow you whole. But you know what sometimes you just need a hug, passing a huge hug to everyone.
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Call the helpline for free on 08088080000, 8am to 8pm everyday.
“life is like a box of chocolates, we search for the good ones first and hope not to have to eat the bad ones"
The right answer is do what suits you.
Some people seem to ignore the fact I've got cancer, some want to write me off, some ignore me
Some want all gory details
Yet Ive also discovered friends I hadn't heard of for a while being supportive, knowing what to say without skirting the situation.
I set up a whatsapp group for siblings, facebook I used to encourage my friends to get psa test but then not mentioned since.
I'm not living my life of social media and if people can't or won't ring me there are plenty that will
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