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arpie
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Joined 8 years ago
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Re: Just diagnosed - it's all moving so fast
That's terrific, Kirsty1 - that is VERY quick!! Even better - absolutely, less time to stress xx. Take lots of deep breaths if you feel unsettled ... take it all one day at a time, one hour, if you must! Don't forget the Helpline is there for a chat if you'd like to. (Mine took over 3 months from detection to get to surgery!! But I live in a rural area & it was nearly 9 years ago!) My best suggestion for taking to hospital with you is a pair of earplugs ( recommend 3M) and an eye mask (from a plane!) Hospitals are bright & very noisy places, even at night! You squish the earplugs to about pencil thickness & shove them in your ears & they expand to fit your ear! They are VERY good - and don't stick out (which can be uncomfortable!) Take some reading matter (magazines rather than books, as you get interrupted all the time!) and your tablet/phone/chargers .... something warm (they are cool places too!) And front opening PJs (you don't want anything you need to pull over your head for a good while after the surgery.) There are more tips on this link ... and just tips in general on the whole thing, too: https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest Take care & all the best xx Keep BUSY on the weekend. 😉Re: Advice on how to prepare for TC chemo?
Hi greenplastic I hope you are recovering well from your mastectomy/reconstruction xx. I didn't 'do' chemo, so can't help with info on that but if you click on this link, it will take you to other posts re TC Chemo xx. You can go to the 'search' magnifying glass to search for other bits, too, if you like (eg Cold Caps - some members have used them, with varying success rates.) Search | BCNA Online Network Do you have a Breast Care nurse assigned to you yet? They should be able to help you with many of your queries .... or give the Helpline a bell here (Mon-Fri, 9-5) on 1800 500 258 for a confidential chat with one of the Mods! xx Take care & all the bestRe: Just diagnosed - it's all moving so fast
Welcome to the club that no-one ever wanted to join Kirsty1 We all still remember when we received our own diagnosis & it can really muck with your head xx Definitely make sure you have a trusted friend or family member with you at all your appointments from now on (a 2nd set of ears and also physical and mental support!) And seriously, I suggest you do record the meetings as well as it is impossible to remember everything that is said - and you can't take notes & listen at the same time! There is so much to take in - if it becomes a bit stressful, ring the BCNA helpline & have a chat xx It really helps to talk it out. Stay away from Dr Google .... get all your information from your medical team! In between appointments, try & keep as busy as you fan, doing things you love doing! Or you could start cooking your favourite meals to freeze, so that you have enough cooked meals for after your surgery xx Whack up any questions you may have & members will jump on to give you honest replies = as we've 'been there, done that' ..... Take care & all the best for tomorrow xxRe: Day 2 Post-Op
Hi Kirsty1 SO sorry to see you joining us here! Do you know what type of BC you have yet? Feel free to put your story so far in its own post in the Newly Diagnosed spot - then you can just keep adding to it, as you attend your appointments etc xx. Newly diagnosed | BCNA Online Network I'd suggest that you take a trusted friend or relative with you to your meetings from now on, for both physical & mental support and even an extra set of ears - and also consider RECORDING them too, on your phone xx. It is almost impossible to remember everything that is said & this way you can go back over it in the quiet of your home & take notes. xx The waiting can really suck! :( If you are feeling a bit stressed (which is 100% normal, as this diagnosis mucks even more with your brain than your body!) give the Helpline a call on 1800 500 258 (Mon-Fri, 9-5) for a confidential chat - and/or consider listening to Charlotte Tottman's Podcasts on her own experience with BC - as she explains it all very well xx She is a specialist breast cancer Counsellor who had a double mastectomy following her own diagnosis, choosing to stay flat. She was surprised at her own reaction to the news/surgery/treatment, as she'd been counseling others for many years & thought she 'knew it all'! She has done 2 ‘podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season. She is very easy to listen to & you'll probably recognise some of your own reactions in many of the podcasts. http://www.drcharlottetottman.com.au/my-podcast.html And check out this thread too - there is a lot of general info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest take care & all the best xxRe: Waiting, waiting, waiting….
It will be a relief for you to have had the surgery xx. Unusual that they didn't drop in on you - public or private! I hope you are healing well - just make haste slowly & be very vigilant on NO LIFTING!! Yep - one day at a time, one hour if need be xx Have you been assigned a Breast Care Nurse yet? They will become your 'go-between' person for followup info xx If you are up to it, you can contact them here, put in your postcode & see who is in your area. xx https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/ Make sure you have a trusted friend or family member with you when you get your results as a 2nd set of ears & also as physical & emotional backup - and also suggest you record the appt on your phone. It is almost impossible to remember all that is said 'on the day', specially if trying to take notes - and that way, you can go back home & listen to it again, taking accurate notes then. xx take care, all the best for your results.Re: New diagnosis
Hi wahine73 , are you a Kiwi?? I lived in Auckland for 15 years & loved it!! 😊 I am so sorry to see you joining our select little group …. Whack up ANY questions that you may have, as we’ve all ‘been there, done that’ and all of us combined, should be able to give you a helpful answer. xx Everyone remembers the shock of hearing the ‘diagnosis: “You've got breast cancer” ..... Causing sadness, distress and even anger. It really mucks with your brain, sometimes even more than your body! It can be highly stressful & upsetting in the early days of diagnosis - so if you feel a bit overwhelmed by it all, give the BCNA Helpline a bell on 1800 500 258 (Mon-Fri, 9-5) for a confidential chat with one of the Mods xx. Whilst everyone's diagnosis may be slightly different - My own diagnosis was similar to yours - I had a lumpectomy followed by radiation & then Hormone suppressing meds for 6 years. I finished them mid last year. I was in hospital overnight - but for some, it may just be day surgery! (I live in a regional area, so the surgeon suggested I stay overnight, so I didn't have to travel home the same day.) BCNA has a private ILC group that you may like to join, where specific ILC info is posted ... as it presents 'differently' from 'normal' breast cancer. It doesn't form a 'lump' as such - it usually grows slower & grows more like 'strands' rather than lumps - hence it is more difficult to spot on a mammogram, specially if you have dense breast tissue. Make sure you take a trusted friend or relative with you to all your meetings from now on (for physical and mental support - and also a 2nd set of ears!) & also consider recording them too, on your phone xx. It is almost impossible to remember everything that is said & this way you can go back over it in the quiet of your home & take notes. xx Also, make sure you stay away from “Dr Google’ (difficult tho it is) - as a lot of info there is not only out of date - it probably also isn’t even relative to your own diagnosis. Going down that rabbit-hole will also muck with your brain. Consider listening to Charlotte Tottman's Podcasts on her own experience with BC - as she explains it all very well xx She is a specialist breast cancer Counsellor who had a double mastectomy following her own diagnosis, choosing to stay flat. She was surprised at her own reaction to the news/surgery/treatment, as she'd been counseling others for many years & thought she 'knew it all'! She has done 2 ‘podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts. http://www.drcharlottetottman.com.au/my-podcast.html Check out this thread too - there is a lot of info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest take care & all the best with your upcoming appointmentsRe: What would you do if you were me?
I am SO sorry to hear of all you've been thru Summer_Prevails xx. My deepest condolences on the passing of your mother xx. Caring for her in her final months would have been very hard and the associated grief with her loss is just devastating. (I lost my husband to cancer 4 years ago, having cared for him on my own since his first diagnosis & then the final 2 years after diagnosed terminal. I am still grieving xx) BUT - He/we also had 10 fantastic years prior to the Stage 4 diagnosis (after his first lot of chemo.) We have Carer's Corner private group, if you'd like to join & have a chat with those who know what you've been thru xx. You are now caring for yourself too xx Group: Carers corner | BCNA Online Network Also consider chatting with the Helpline on Mon (1800 500 258) for a confidential chat about 'things' xx. Do you have a counsellor available to you? You can also call the Cancer Council https://www.cancercouncil.com.au/get-support/cancer-counselling/#connect That is a REALLY tough call - do I or don't I do the chemo again? Only you can make that call - BUT ..... you are still a YOUNG WOMAN and I am sure there are things that you would like to do. Maybe, do a road trip & catch up with your buddies in the other states after you've sorted your Mum's estate .... Do you think your reluctance to go ahead with treatment may relate to you looking after your Mum? If you were a lot older, I'd probably say that quality IS better than quantity ... Personally I'd be leaning towards having the treatment - can you get a 2nd opinion from another Onc, or are you 100% happy with your current Onc? Remember, she is saying what she believes is in your best interests xx I don't envy you your decision making .... take care & all the best xx
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Connecting rural, regional & remote areas
We understand that living outside major cities can bring unique challenges when it comes to accessing care, support, and information. From long travel distances to limited local services, these experiences can feel isolating—but you're not alone. This is a space to connect with others who truly understand what it’s like to face breast cancer while living regionally or remotely. Share stories, ask questions, and support one another through the frustrations and the wins - this group is here for you.Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.Carers corner
Whether you're caring for a partner, parent, child, or family member, this group offers a safe and understanding place to connect with others in similar roles. Share your experiences, talk through the personal challenges of being a carer, and find support from a community that truly understands the emotional and practical realities of caregiving for a loved one with breast cancer.Breast cancer without children
Whether by choice or circumstance, navigating breast cancer without children is a unique experience that can feel unsupported or isolating. This group offers a compassionate space to connect with others who understand, share experiences, and find strength in community also living breast cancer without children.
