I have spent several hours reading various threads on the site, most of which seem to have a pre-existing body of contributors, who don’t seem to re-act too well to intruders/newcomers.
There also seems to be some sort of common shorthand with abbreviations/symbols which are double-dutch to an oldie like me.
I lost my daughter 15 years ago, and my husband in April last year to a long-standing brain tumour. I was an only child with mno surviving relatives on my side, and the nearest relative of my husband lives 85 miles away.
As a result, I am finding this hard going with very little support other than the odd phone call, and even then, it appears that the novelty has worn off and no-one really wants to hear the catalogue of chemo symptoms. Solo visits to hospital are the worst for me as it accentuates just how abandoned I feel.
I’m sure there must be others out there in a similar position - why don’t we compare experiences ?
Any ideas or correspondence would be very welcome
Hey love please dont feel shut out of any threads.It isnt that people dont welcome new contributors they just respond to each post as it comes.Many have been around for a lng time and its easy to forget those dark scary isolated days of early post dx adjustment.The abbreviaations and jargon can be soooo confusing.I didnt know any of them at first.Mind you I didnt know what lol meant either till dawnhc told me.I was apparently laughing at people when I meant to send them my love lol[!!!].Why not make a list of the terms/abbreviations you’re not sure of and someone[me if I see it first will explain].You are never alone on here honestly.Didnt you try the Storm riders thread too.That is very friendly.I will send you a pm and hope to talk soon.Lots Of Love Valxxx
PS I am 65 and had chemo etc and will gladly talk symptoms or anything elsexxx
I agree with horace, don’t feel you can’t join any thread.
You may find it most helpful to look at the threads of those who are going through the same stage as you - there are often ones like ‘Starting chemo on x date, looking for buddies’. Or you could start your own if you have a particular problem or issue to discuss, or just for a chat.
Commonly used abbreviations is something I’ve asked the moderators to put on here as when we are newly diagnosed we have a lot to learn about oour condition without the challenge of them too.
If it helps, I think these are what some of them mean:
BC = breast cancer
DX = diagnosis
WLE = widespread local excision (the operation for those of us who don’t have a full mastectomy)
MX = mastectomy
Are there any others you’re unsure of?
Take care, and hugs
Kinden
xx
OH = other half
Hi there Storewoman,
I’m so glad that others have a problem with the initials and phrases, I found them hard to decipher and am only learning as I go along. I am a bit technically challenged, so I ask hubby or son to help me, but again I am learning simply by doing! Hey Horace…I have been wondering what lol meant too, seen it alot in ‘posts’…didn’t like to ask ,and ‘post’ was a new term to me before I came on this site.
I tried the stormriders site and found it intriguing but at the same time, welcoming. I hate to think that you feel shut out storewoman, because this is the time you really need to chat, get it off your chest so to speak, but as well talk about other things that matter to you and effect you. I spent weeks after diagnosis just trawling through the different forums, with no intention of ‘joining in’, then one tentative night I took the plunge!! Please, please feel you can chat, not as good as the real thing, but it might help!
Helenx (a technically challenged 53yr old)
Ps so technically challenged I don’t know how to put a photo on!!!
Hi Storewoman
I’m so glad you raised the issue of abbreviations as I was completely confused too, and glad that someone answered so now I understand a bit more!
Like you I feel very isolated. I am very lucky to have a loving and supportive husband but no other family that I would trust and talk to. I’m hoping to find this site useful but, like you, am finding it hard to get my head round at the moment. Hope some of these replies have helped you.
Thanks everyone for the decode session - very enlightening.
Anyone know about smilies etc ?
Nell - do you have a digital camera ?
If so put one of your favourite pics on the computer, somehow move it into " My documents" ( easier to find there )and give it a name you can easily recognise.
Go into " My profile" and at the bottom it gives you chance to browse for an image - find the title you gave yoour picture, highlight it and press subnit - if you have any other problem, just ask.
Horace - day 17 and I still have a full thatch of firmly attached hair - the effects certainly are different from person to person !
Everyone else had re-assured me that I’m not the only un-modern old duffer on the site - thanks for that
Hi Storewoman
Thanks for the info about photos. Will check out how to put a photo on, when I’m feeling more alert!! Then again I might just cheat and get hubby to do it!!!
Glad you feel a bit better about the technical stuff!!!
Helen xxx
hi there,
Please don’t feel shut out - you will soon pick up all the jargon. I have found the ladies on here a great support (and one or two gents too)I have found it quite hard to make new friends in ‘real’ life since DX but the support on here has been great. Hope it works for you too
cheers
caroline.
Hi Storewoman,
LOL= laughing out loud.
Here are some smilies and their interpretation:
classic smile with nose
classic frown with nose
classic smile without nose
classic frown without nose
Happy or
Really happy 
or
Wink 
or
Happy eyes:
Laughing eyes: >:o
Content: :3
Grumpy: >
Sad: or
Crying emote: :’(
As for the acronyms related to breast Cancer, we really ought to have a sticky (i.e one of those post with an i icon next to it). Those stay at the top of the list at all time. I may start a post with a list of acronyms and ask the moderator to post it as sticky in the folder “Using the discussions forums”.
good night
Sophie
Hi all
A variation on the above is for spectacle wearers like me - we use an 8 instead of the : for our ‘eyes’, thus -
I also wondered why there was no Glossary on the site for all these perishing acronyms - so i contacted the site techies who assure me it is in preparation. Meanwhile we can all keep having conversations like this one - as the saying has it ‘share what you know, learn what you don’t’ - and boy have I learned a lot since my diagnosis a month ago!!!
Big hugs (gentle on the right side, I’m still a bit sore from op)
Rosie the Womble
Thanks everyone - as you say it really is a voyage of discovery.
Does anyone else also wish the medics would put things in words of one syllable for us oldies ?
The other day I was told I wasn’t pyrexial - why don’t they just say "you’re not running a temperature "?
Maybe it gives them a feeling of power
Hi girls
Wow Sophie you have certainly opened my eyes (something like that). Thanks for all the tips on what things mean. I will have to keep coming back to this forum to remind myself though!! Hey Rosie, good idea getting in touch with the ‘techies’, we might all be writing in code soon ;-). starting already!!! (hope your side gets better soon!)
Helen x
PS. I didn’t put my photo on, my son did in half a minute!!! Sometimes you just have to cheat!!
Thanks Sophie for the decode on smilies etc - I’ve done a screen print so I can refer to it more easily
Hi, I remember when I was first diagnosed last February and being bewildered with all the abreviations ! I did ask about them and now use some of them. I thought I was not too bad on the computers but smilies ?! I still find them difficult to use as I forget them so easily. It is very easy to forget what it is like when first coming on the site how isolating it feels when you think everyone is speaking in ‘code’. It has made me think again about the abreviation i use on the site especially to new members.
Rachy
Hey BCC - this isn’t a new idea about a glossary of abbreviations etc - I submitted the request last Feb !
For what it’s worth, I thought I’d last about 5 minutes on this site when I came to it as I thought it looked although people were in cliques.
Over 3 years on I’m still here, still posting. Keep saying I’m going, but keep coming back!
Hi Storewoman,
When i first came to this site i too thought oh my god! this is no place for me, usually if i meet people face to face i can talk for britain but found it difficult to post a reply or say anything about myself. I joined over 2 yrs ago and it is not that long ago that i became confident enough to post but i did enjoy reading about everyone and got engrossed with certain people.
I have been dealing with bc for over 18yrs now and at the beginning there was nothing like this the hospital i was first treated in was a big cancer hospital and they didn’t even have a breast care nurse and when i was first introduced to one 7yrs later i thought what do i want to speak to you for, however having had 3dx within 2yrs have found my current one’s invaluable and also feel the same about this site, i keep saying to myself i am not going to log on but i always do, i enjoy it on here, and when you get used to it you will too.
Lots of love and best wishes
Reneex
Forgot to say brain still can’t register abbreviations.x