Why not join the Living with metastatic private group? Access group via the link here.
I can't connect with my diagnosis..
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@Ellamary98 I am sure you have most of these links etc but thought it would be a quick helpful guide for you.
Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet.
It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time.
The what and how thread.
http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1
Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other resources.
https://www.bcna.org.au/resources/
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information or support please call 1800 500 258. The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.
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Don't beat yourself up about what you could have done differently @Ellamary98 There is absolutely no guarantee that any treatment is going to keep us 'safe' . Tamoxifen is certainly not a magic bullet, as many of us who are now on BC Version 2 or 3 can tell you. I haven't had blood tests for 2 years, and that is after a recurrence. My oncologist says "They make everyone crazy."
It's devil or the deep, hey? Take everything and be miserable while stressing yourself into cardiac disease or decide that something is wrecking your life and reject it. Many of us struggle with that equation, ultimately we do the best we can and hope the odds are on our side. Unfortunately, there are always going to be a percentage who get the shitty end of the pineapple. Apologies for the mixed metaphor. Best of luck, because I believe that is what it comes down to. Mxx
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Thanks so much. I received my 'Hope and Hurdles' kit today in the mail, so I suppose I will do some reading tonight, and maybe check in with my breast care nurse from last time. This conversation has certainly helped me to take the diagnosis on board. I am very pragmatic, so I guess this is just my natural response. Life has dealt me some curlies over the last few years (as well as some magic), so it does feel like the next hurdle in my life. There is also a part of me saying "Fuck that, I'm not having it." If only it were that simple! You are all amazingly supportive- I can see that I will be hanging around this site a lot!
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Jump on board anytime @Ellamary98 - this forum is so amazing - there's always someone around 24/7 to offer support or just to listen to a good 'ol rant. It's been a life saver for me. And fuck cancer? - Absolutely!1
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Saying "happy to have you here" is kind of wrong! But you know what we mean. This site has been a sanity saver for me on multiple occasions. There's always someone about, day or night. And helping people who come on behind you is very rewarding. K xox
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@Eastmum , I hear you! I like to keep personal things close to my chest, which makes me uncomfortable announcing health issues. It was such a relief to be over the drama of bc first time around. Everyone was so wonderfully supportive, but I hated having people in my home all the time, and I felt like a goodwill project. In addition, my husband (who is super-private) felt like he had lost me to everyone else ( I have a large family), and subsequently felt a bit hopeless. Also, we were trying to protect our children, and some people arrived at the door with meals or cakes, openly crying! This is why I dread telling friends and family, but you are right- I just need to lay down the rules and take the drama out of it. It is true that people will generally follow your lead, and I have already told our kids to ignore everybody else and just listen to us. Having said all that, that year was a time in my life when I felt most loved- it was just overwhelming.
I have decided to wait anyway, until I have another scan next month and there is a firmer treatment plan. Like you, I like to research it all first and feel a bit more in control. I've decided that I will blow everyone's preconceptions of metastatic breast cancer out of the water!
Good luck with your treatment. I hope that it is going well for you and that your recovery is smooth as possible. Soak up all the love and attention that comes your way- you need it to get you through! xx 1 -
Thanks @Ellamary98 - I've had to learn to be a lot kinder to people who are just trying to help - LOL - it still throws me when I get a text on the day of chemo to wish me well and I think - whoa, that friend is keeping track of when I have Chemo! On the one hand, it's so nice and I really do appreciate it but there's that little part of me that just wants to do it all quietly in my own way with no fuss. I've definitely put a few people's noses out of joint by not being needy - then again I've been touched by the soup arriving on my doorstep, the lovely gifts of scarves, books and flowers and the cards.
Ultimately I know that everyone means well and comes from a good place, with good intentions.
Good luck with your scan next month - you've definitely got the right attitude, which will influence everyone around you.2 -
@Ellamary98 It's been a completely unexpected by product of breast cancer for me as well. I have never felt so loved in my life. Deeply affecting.2
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@Ellamary98 I was the same as @Eastmum. I told some people and they didn’t know what to say - so I made sure to tell them “f**k cancer, that’s not gonna beat me”. I told them I didn’t want any pity - I just wanted them to be there to support me and make me laugh. Big hugs xoxoxo3
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@Ellamary98 I was diagnosed nearly 2 years ago with stage 4 denovo. It took about 3 months to get my head around it. It felt like something out of a crazy nightmare.
I only told a few of my close friends at the beginning, it was hard, everybody was upset. And there was nothing I could do to make them feel better or them me either.
I had to tell my work colleagues, because I had to reduce my risk of hurting myself. That was a terrible day. Didn’t sleep for about 3 days.
My kids were told, they took it hard, but they’re doing well & engaging in counselling sessions when they need it.
But I don’t live like I’ve got mets, I try to do everything the same as before. Some days it’s easy to forget, other days (like drs appointments, ct scans, bone scans & operations) these appointments remind me of the diagnosis.
best wishes
Anne
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Thank you, @Anne94. I am beginning to feel more settled within myself about the diagnosis- not so much denial, as acceptance and a determination to carry on as normally as possible. So far, only my very nearest and dearest are aware. This week, I did practice telling a work colleague who I am close to, and I thought I had presented it in a very unalarming way, but she became very upset so I have decided to keep it close for the time being. It can be tricky feeling responsible for everyone else's emotional well being, can't it? I've lost sleep, too. I'm glad to hear that your children are making use of some counselling. Do they see a group counsellor, or have individual support? So far my children are unalarmed, but this is due to the way I delivered it to them- at some point they will become fearful, and we will need to arrange some counselling.
Thanks for your message, and good luck with your treatment. 1 -
@Ellamary98
We are a matter of fact family, never go into dramatics etc. but I engaged with the school straightaway & let them know what was going on. The counsellors gave the kids strategies to help navigate their fears etc. The primary school counsellor and I made a decision to engage the high school counsellor and they have been fantastic.
My daughter has utilised the service twice, once when I booked her in and the second time on her own. It gives them an outlet.
I have used the psychologist at the cancer clinic a few times, she helped especially when I told my colleagues at work. It’s a good way to rationalise it all.
Anne xo1 -
Thanks, @Anne94. I'm planning to speak to the schools tomorrow, so it's perfect to read about the approach your family took. xx0
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@ellamary98 I told my daughter's primary school teacher (who passed it up the line), and my other kids' high school home group teachers as well as had a meeting with the Assistant Principal in charge of well-being there (I work there so they already knew what was going on). For my middle child, it is a first year at high school and she has used the counselling service on a couple of occasions. They have watched out for her and my son this year.
As far as telling other people, I had to tell my boss, of course. My husband and I told the immediate family as things were happening after diagnosis. I also told two key friends, asking them to tell other friends and that I didn't want to be barraged with phone calls or visits. My husband then helped me set up a blog and I put all updates on that. It's been a really good way for friends and family to catch up on my news without feeling that they need to contact me all of the time and me having to go through it each time. I've also used it shamelessly as a way of getting my own thoughts in order.1 -
Hi @Sister. Thanks for your post. I really like the blog idea, and had been thinking perhaps I would do something the same. A friend with mets has a facebook page to update friends, which she keeps separate to her usual page. I guess that a blog is a more diary styled approach, which could be good to look back on or even, as you have found, a cathartic space to get my thoughts together.
I have left a message for the secondary school well-being contact, and an email to my Grade 6 daughter's teacher and AP. There is no change to my routine as yet (I start a new treatment plan next month), so I know that the kids are not stressing right now, but I guess it is best to keep ahead of any concerns they will no doubt develop. Thanks so much for sharing! I'm going to think about a blog... xx 2
