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j9k
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Joined 15 years ago
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Re: How to prioritise self care?
Oh @kmakm, my heart hurts reading your post. It's so hard to juggle all the balls. My psych always insisted I couldn't give anything to others if my reservese were compromised. If the well is empty there's nothing to fill up others so don't sacrifice self-care (another water analogy) . You might not do all that you want, but you can't let it go entirely. Another important tip from my psychologist was 'natural consequences'. My son has ASD and I was on my own with him during 2 BC diagnoses. He had his own struggles but I couldn't fix things for him. She said natural consequences are the best teacher. Eg. If you don't wash your clothes, you have no clothes to wear. For your son, no work = no money = no fun. Therefore if he wants to do things at uni he will need to get money. Therefore a job. Most of his peers will have one. For the kids at dinner, it never hurt anyone to make their own Vegemite sandwich for dinner, or a bowl of cereal. If they don't like that, the alternative is to help. Could they do the prep for dinner - chop veges, etc? It's a life lesson - a natural consequence. Tough love even. When things get hard, everyone has to chip in. It is ok for you to prioritise time and activities for yourself. It is more than ok, it is essential. It is self-preservation. If you fall in a heap, the family will be in a worse position. It's the hardest thing for us to do I think - make ourselves the priority. Thinking of you. Xx 💜9Views0likes0CommentsRe: Looking for information re: scans or ultrasounds after having double mastectomy
Hi @"Chris Nixon". I had left mast in 2009 after 2nd BC (1st in 2005). Had 3rd BC in r breast 2018 and had right mast. I will get ultra sound in April On chest wall and armpit nodes. I was paranoid about recurrence after 2nd BC and now fear that there is nothing obvious to check - like a breast. Surgeon is happy help to allay some anxiety by getting an ultrasound. I realise as @Zoffiel said if there's no lump nothing will show but my surgeon feels if an ultrasound helps reduce some anxiety by feeling like I am doing something to check, she is happy to address the psychological aspects this way. She acknowledges that even without cancer, the psychological aspect of fear can become debilitating and impact on a person's functioning and quality of life. I'll take anything I can get to gain even a smidgen of peace of mind. 🙂6Views0likes0Comments- 26Views0likes0Comments
Article from USA re patient advocacy & metastatic bc
Thought this article was topical given some of the issues expressed on recent threads. Patient centred care and engagement with consumers to inform practice, research and priorities is the way ahead to create better outcomes for all. Best wishes to everyone for festive season. 🎄🌈 https://www.npr.org/sections/health-shots/2018/12/16/676809440/commentary-how-patients-have-transformed-a-medical-meeting-about-breast-cancer ;Re: So much for good vibes. Scan day sucked . They've called me back.
Hi @Zoffiel, did your GP tick the 'permananent' box on your certificate? I have had the same problems with Centre#+it after my 3rd BC episode earlier this year. If its not temporary they are essentially telling you to apply for dsp. I have a dsp application pending (I have other medical issues as well) - for 12mths no less, now with a social worker assisting me to see why it's taken so long, meanwhile 'surviving' on Newstart not being able to work. Contact them and ask to talk to a social worker to help sort it out and also advise of the stress and frustration it's causing you. It should be as simple as Dr ticking the 'temporary' box on the form, if he hasn't already. It has happened to me twice as Dr has said my circumstances are permanent but that doesn't suit the system because that doesn't correlate with their 'boxes' for Newstart. I hope you get a speedy resolution. It totally sucks. I wish daily I didn't have to have anything to do with them. Happy to help if I can. 🙂4Views2likes0CommentsRe: Out of hiding
@Blossom1961 you could reframe your 'keeping your distance' from your mum as being as bad as her, as setting healthy boundaries for yourself. Toxic family is so hard to deal with (I have my own experience) but please put yourself first, especially now when you have your health to prioritise. You can firmly and respectfully show her what behaviour you are prepared to accept. Best wishes for healing and peace. 🙂6Views3likes0CommentsRe: Newbie - and finding it hard to go back to work
Hi @rose, sorry you have had to go through this. This horrible BC turns your world upside down. It usually comes out of nowhere and from diagnosis to treatment is a whirlwind. It is completely understandable you are finding it hard to return to your previous normal. It's only 2mths since this all started for you. It will take time to find your new balance, which may mean you re-evaluate things in your life, or at least need some time out. People talk about a new-normal, and it may take some time to find that. Be gentle with yourself. You have had something happen to your body, but my experience is that it takes a while for the mind to catch up. You go into survival mode to get through the intital stress of diagnosis and then I believe the mental aspects of that process start once you are through that initial crisis. Are you able to take some holidays to give yourself some time to manage what you have been through? For me, the mental aspect of BC has been much harder than the physical. I have found this forum a supportive place where you are understood. Ask anything. I don't know what to suggest re the counsellor except to say that what you have been through is traumatic. It may take a little while for these feelings to subside. Is there another counsellor you could talk to? Sometimes it's about finding the right person to talk to, with the right process. There are also people to talk to at bcna. You could try one of them. I don't have the number handy but it will be on the website. (I'm not good at finding other things at the same time as writing on here) . Or other ladies will post the details. Please take special care @rose.17Views3likes0CommentsRe: QUT research study – Share your thoughts about new breast reconstruction technologies
I know they are busy @arpie but surely there could be a more consistent experience with them. Fortunately I had a wonderful surgeon who gave me her home number and told me to call anytime if I was concerned about anything. She held my hand before I was wheeled into surgery. I guess I don't know what I missed out on by not having a good BC nurse but my surgeon was my lifeline. I was lucky. 🙂23Views0likes0CommentsRe: QUT research study – Share your thoughts about new breast reconstruction technologies
Hi @Lisa_BCNA, I just did the survey. I also didn't have a breast care nurse. It took my third occurence this year, 13yrs after my first BC before I saw one and then all she did was bring in bras and give me brochures after my surgery. Also another option for recommendations should have been 'wouldnt recommend to friend' which procedure. I was too frightened of reconstruction so didn't have it and wouldn't recommend something that crucial if I had not experienced it and wouldn't anyway. I would support friend to find out all info to come to own decision that was right for her. And I have concerns about the new procedure and the possibility of regenerating BC. Granted I don't know anything about it but that would be a major concern for me. @arpie also think they are trying to assess risk taking - would you gamble on a potentially better outcome or play it safe. Such as would you go for a new reconstruction procedure or go with the tried and true. Without room for comments, these surveys only get part of the story and a very narrow profile of people and their info. I guess it's early days and they want a quick reference point but it's frustrating as a participant when you can't qualify an answer such as - I didn't have a BC nurse.10Views0likes0Comments
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Choosing breast reconstruction
PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.
