Talking about new diagnosis, treatment
RozMoz
Member Posts: 11 ✭
I was diagnosed on 5/8 and am waiting for a date for surgery. So much is unknown about treatment until my pathology results come back. I have an amazing family and friends but am struggling to talk with them as this makes ‘it’ real. They just want to support me and are respecting my need to talk only when I feel like it. It’s hard enough dealing with my emotions at the moment without worrying about others, but I don’t want them to worry.
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Hi there @RozMoz....welcome to the club nobody wants to join. We all "get it" as we've all been there. You see, within your close social circle, your cancer diagnosis has rung not only your, but everybody's existential bell. Gosh if Roz could get "it"...then so could we !!! This is a huge deal with some people, and at the moment, you have enough on your plate to eat, without having to feel the need to deal with others' stuff, shit or whatever. You will always find someone here, day and night, to lean on. We're an assorted bunch here, with different methods of communication, skills and experience. What we all have in common is breast cancer. Sending the biggest cyber (((hug)))...Ally,4
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@RozMoz This first bit is really hard, I promise it gets easier, but getting your head around it takes time and I'm not sure if it ever fully computes! Its okay to not communicate, to be in your own head a bit now.
I told everyone close about my diagnosis after I found out from my GP but kept communication to a minimum while I waited for my appt with the Breast Surgeon and an idea of the treatment I faced. After surgery when I had my full pathology I shared more with my closer circle.
It was hard having everyone wanting to know more and my advice is maybe to not tell people exactly when you are going to get the results so you don't have them messaging you! They mean well but it can be overwhelming.
After my surgery and getting back pathology I told more people.
And again when I started chemo when i knew I would be bald.
I sent out emails and texts to friends. Weirdly it can be overwhelming getting lots of support from people, replying to everyone, so it helps to tell people bit by bit.
Once you lose your hair you lose the control of who knows a bit more but by then you have had time to get your head around things, and you know you are still the same person and you are happy to talk to people more.
But take it at your own pace and do what feels like. Good luck with it all, your feelings sound very familiar
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I didn't tell anyone outside of the people under my roof for eight days. I wasn't ready to talk for about a month. My sister had died from breast cancer the year before so it was especially loaded. My husband told my parents and my remaining sister. I simply could not see their faces when they found out. Coward maybe! I told friends via WhatsApp.
I also didn't want anyone to go through the agonising worry of waiting on pathology. It was good to have results and a plan when the bad news was being delivered.
There's no right or wrong here. Do what feels right for you. K xox2 -
Sorry to see you here @RozMoz - we are here to help you get thru it. This 'initial waiting time' after diagnosis is the pits & is such a horrible time - just try & keep as busy as you can in the lead up to surgery, doing what you love doing to try & keep your mind as busy as your body. Believe it or not - it WILL feel so much easier once you've had your surgery & results. (I was actually AMAZED at how 'relatively unaffected' I was following the surgery too, just discomfort really!) Then you will have your plan of attack & know what is going on ahead.
Ask any question you like & you'll get straight up answers from those who've gone before you. There are no silly questions.
Same as @shs14, I kept everyone informed with Emails - it just made it so much easier. People will still email you individually & you can choose whether to reply individually - or just send out a regular 'everyone' email.
Where abouts are you (Town/State) as our members may well know of support services in the area that may be of assistance to you. You can edit your profile to show your general location.
Go with the flow - there will be rage, anger, tears - just let it flow - and then finally a 'sort of acceptance' that you just need to get on with it.
All the best, take care xx1 -
@RozMoz Welcome aboard!! You have found a new group of friends here that will help & guide you all the way!
I come from a small country town & chose not to tell anyone apart from my boss & coworker, close family & 2 other friends. My in-laws still dont know & many of my friends. It's nice to walk up the street & not be confronted with being bombarded with questions, even though they all mean well, or the opposite of having people avoid me! I'm glad I made that choice as I am 18 months post surgery & feeling great & not having to have chemo & losing my hair helped keep my secret!
I would advise to jump on the McGrath website & find a breast care nurse nearest to you. You can put in your location & then chose someone close to you. The website gave me my nearest nurse & her email so I contacted her by email & introduced myself & told her my story. I then emailed her all my path/medical reports as they came in so she knew what i was dealing with. They are medically trained so can answer all your questions & they can counsel you & your family through it all.
Take someone with you to ALL appts for another ear to listen. take lots of notes or record the appt. Beforehand, write down all your questions so you are prepared.
Try not to worry too much, easier said than done, before your results come in as you dont know what you are dealing with yet. This would also make it hard to talk to family when you dont know whats ahead. Things change all the time so focus on what you do know when the report comes back & try not to over think as cancer feeds on stress so you wont do yourself any favours by worrying about something that may not even happen. Be kind to yourself & you will know when it is time to talk about it & your family/friends will hopefully respect that. Take all favours of food & help that is offered & one step at a time. love & strength xx
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Always do what feels right for you. I told everyone I felt needed to know - immediate family including my 88 year old mother in a nursing home (with the encouragement of staff to do so), work boss and colleagues, friends. Told my neighbour and found out for the first time that she was a 10 year survivor - which I found really reassuring, had no idea! It just seemed easier to get it out in the open for me - then other stuff would not be a surprise. There wasn’t too much stuff affecting others as it turned out. So for me there was a slight issue of gently reminding that I was still in the zone - a bit of scanxiety, some very annoying side effects, still the nagging thought of recurrence. I think I have managed a pretty good job of putting it all in its place but you do cross a line - it can and has happened to you. That said, I have had an overall excellent 7 years with no evidence of disease, wouldn’t have missed it for quids and am optimistic about more. Best wishes.3
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Thanks for sharing your wisdom. It is great to know that I can talk to people who are there or who have been there.
Found out my surgery date today and now feel like I can just keep on with life and the next stage until the unknown is known.2 -
The waiting during this period is so hard and you're probably still in shock. My husband told his family, and I told my manager by email (she knew that I was going to Breastscreen for a follow-up). I also told two close friends from different friendship groups and asked them to spread the word but that I didn't want anyone to contact me. They were the ones who updated everyone else for a little while. While I was having my first surgery, my husband set up a blog for me and after that, that is how I kept everyone informed - family, friends and work colleagues. It meant that I didn't have to repeat everything all the time and it's now a journal of what I was going through, much of which is a bit blurry now.
Take care.4 -
My son said it best when he said, "I don't know what to think of it all". I said, "I don't either, and I am the one with it."
Day by day you will get through it. Just come on here for a good rant and to preserve your sanity.2 -
Terrific, @RozMoz - having a date gives you something to aim at now. Here's a thread on what you might like to take with you when you go in! I found ear plugs & an 'airplane eye mask' was invaluable! Plus some treats - butterscotch lollies or anything else you enjoy! Crossword puzzles, magazines, suduko or short stories are better than novels as you are always being interrupted by staff!! All the best xx
https://onlinenetwork.bcna.org.au/discussion/2959/things-to-pack-and-do-for-hospital-stays
As @Afraser says - it is amazing how many say 'me too' after your diagnosis becomes public knowledge. A good friend of mine in Qld is now 5 years BC free & put me onto this forum. She was my mentor for a good 12 months & helped keep me sane & laughing. Laughter is a terrific mechanism for coping! Check out the 'Friday Funnies' page! There are some beauties!!
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies/p1
I have 5 of my uke buddies who've had BC & my uke group was one of my most ardent supporters thru my surgery & recovery early last year. Just 3 weeks after surgery, 15 of us were in the Blue Mountains performing at the Ukulele Festival there!! I wasn't sure I'd be able to be there, but I made it, even tho still a tad tender! They were amongst the first I told, as we get together every week & I didn't want to pretend there was nothing wrong - plus I would have blubbed bigtime! Plus as I lead the group - my absence would be conspicuous! LOL
Take care, maybe cook up a few meals in advance & freeze them - and if any of your friends offer to do things for you now or after your surgery - mow the lawn, give you meals, walk the dog - TAKE THEM UP ON IT! They will feel better for having helped you & it will take a load off your own mind about 'things to do' when you may not feel up to it yourself!! WIN WIN!
Take care xxx
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So many great ideas and suggestions. I had my first ugly crying episode at work today, telling a work friend, probably the first of many. Not me at all..
I am overwhelmed and grateful for the support of family and friends and whilst I find it hard to accept help, I already know there will be a few days when I need this. Just enjoying life and preparing for the next part of the journey.2 -
No, it is not ugly ... it is an emotional response to empathy from a friend xxx. Maybe ask your buddy to tactfully advise others at work, so it isn’t a daily ritual. Then any update can be via email from you xx
We we have some members in and around Bathurst!
take care xx0
