Best Of
Re: need to connect
Hi @Dessi you are not alone! I am a mum of 4, had surgery in May, and know exactly how you feel. Self care is the game! If someone else can do it, let them. Say yes to any offers of help. Rest when you need. Cry when you need. Do what makes you feel better - binge watch netflix, sleep, rest. Whatever it is. I am on hormone blockers (Letrozole and zoladex). There's lot's on here about that but also take with grain of salt. I am managing them quite well. I am on venlafaxine (efexor) to manage hot flushes. The rest of the symptoms are not too problematic (noticeable but manageable). Listen to BCNA podcasts, especially the ones with Dr Charlotte Tottman, they really helped me enormously. Oh and audiobooks were my friend post op when I just felt to s*$t to read or even watch tv. What I discovered as a highly functional organised self motivated working mum of 4, is that this is the hardest thing I have face, and no amount of self talk made things improve any quicker, what I needed was time and support. I am now 2.5 months post op and I have been doing some jogging, gym through the hospital twice weekly and feel mostly very good. I walked very short distances first few days I was home, literally about 800m (tried to do twice daily) and then increased slowly. I am now doing interval jogs. It gets better.
I do notice emotional and cognitive fatigue mostly now, I take a LOT more time to rest (not filling my calendar with everyone who wants to see me for coffee. On this I follow my gut, if you want to have coffee with the girl friends, have coffee. If not, then don't. If you say yes and then feel not up to it, then cancel. You are number 1 at the moment. Year 12 is a tricky time. I can't help with that one.
Massive hugs. Wishing you all the best.
mell45
4
Re: need to connect
OMG!!!! Thank you everyone so so much. I posted not really thinking I would get so many wonderfully helpful and compassionate replies - I thought I would just vent - but I can see now how wonderful you all are and I feel so much better already - "foggy brain" still very real. You guys are amazing and I now know I have to stop thinking about others for a while and concentrate on me. I do feel bad for my Year 12 daughter though but she has done nothing but reassure me all is good. I'm going to take that as a win!!!! Thank thank thank you!! xx
Dessi
5
Re: need to connect
That's awesome news, @Dessi xx. Having a good cry (of relief) is totally normal, too.
People 'think' they know how they'd feel if given a cancer diagnosis .... but in reality - they don't and WON'T until if/when they get one themself. (Hopefully not.) Even those on your TEAM really have no idea, unless they've been diagnosed themselves previously ......
When you have a bit of free time - jump onto these podcasts by Charlotte Tottman - a psychologist who was diagnosed a few years ago with breast cancer - they are a fascinating 'listen' and she fully understands (NOW) what we've all been thru, previously! It will absolutely confirm that all your reactions are 100% normal xx
https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/
take care & all the best - well done YOU
People 'think' they know how they'd feel if given a cancer diagnosis .... but in reality - they don't and WON'T until if/when they get one themself. (Hopefully not.) Even those on your TEAM really have no idea, unless they've been diagnosed themselves previously ......
When you have a bit of free time - jump onto these podcasts by Charlotte Tottman - a psychologist who was diagnosed a few years ago with breast cancer - they are a fascinating 'listen' and she fully understands (NOW) what we've all been thru, previously! It will absolutely confirm that all your reactions are 100% normal xx
https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/
take care & all the best - well done YOU
arpie
2
Re: Recently diagnosed
Hello @Lozz
Welcome to this group which none of us thought we'd have a need to join. You will find a lot of support on a wide range of topics. Always remember that no question is too silly or too small.
BCNA has just started a private group specifically for TNBC ladies which you may like to join. You will find a list of groups at the right hand side of the screen or at the blue banner at the top of the screen. Just apply to join. If you need assistance just ask.
https://onlinenetwork.bcna.org.au/discussion/25721/new-group-triple-negative-breast-cancer-tnbc#latest
Thinking of you as you begin your road to recovery.
PS You live in a beautiful area ! (I am really a Melbourne girl). 😄
Welcome to this group which none of us thought we'd have a need to join. You will find a lot of support on a wide range of topics. Always remember that no question is too silly or too small.
BCNA has just started a private group specifically for TNBC ladies which you may like to join. You will find a list of groups at the right hand side of the screen or at the blue banner at the top of the screen. Just apply to join. If you need assistance just ask.
https://onlinenetwork.bcna.org.au/discussion/25721/new-group-triple-negative-breast-cancer-tnbc#latest
Thinking of you as you begin your road to recovery.
PS You live in a beautiful area ! (I am really a Melbourne girl). 😄
June1952
1
Re: Recently diagnosed
Hi @Afraser, thank you very much for sharing your experience, really appreciate it! 💐
Lozz
1
Re: Recently diagnosed
Bad luck and wishing you all the best for treatment and recovery. It’s quite possible to work through chemo, problem is that you won’t know till you start. Chemo
reactions are hugely unpredictable. So it’s best to have a plan A and B!
I took a day off off work for A/C (three weekly for three months) but only a half day for Taxol (weekly) - my work location was close to day oncology. I had no nausea or fatigue. I did lose my hair, had peripheral neuropathy with Taxol and some more minor side effects with Taxol (A/C is always considered worse but I really disliked Taxol!) but work was fine, my colleagues all knew and happily I had no chemo fogginess and found work a happy distraction.
But nausea and fatigue are common and can really knock you about. Take things day by day at the start, remember that treatment like cancer does not discriminate and you are not somehow responsible! Take what help
is offered until you can work out your chemo cycle - and take it after that too! It’s tough medicine but eleven years on, I am grateful for it.
Best wishes
reactions are hugely unpredictable. So it’s best to have a plan A and B!
I took a day off off work for A/C (three weekly for three months) but only a half day for Taxol (weekly) - my work location was close to day oncology. I had no nausea or fatigue. I did lose my hair, had peripheral neuropathy with Taxol and some more minor side effects with Taxol (A/C is always considered worse but I really disliked Taxol!) but work was fine, my colleagues all knew and happily I had no chemo fogginess and found work a happy distraction.
But nausea and fatigue are common and can really knock you about. Take things day by day at the start, remember that treatment like cancer does not discriminate and you are not somehow responsible! Take what help
is offered until you can work out your chemo cycle - and take it after that too! It’s tough medicine but eleven years on, I am grateful for it.
Best wishes
Afraser
3
Re: Pre mastectomy tips please
@CathL ... definitely cooking up some meals and freezing them is a good start .... less to worry about when you are home. Line someone up for doing your clothes washing & cleaning, mowing & gardening, as you won't be doing any heavy lifting for a little while (includes lifting pets & grand kids ...) Stock up on movie DVDs or binge watch Netflix, etc .... sometimes it is just easy to lay in the lounge & veg out .... as you can feel quite tired & lethargic after a general anaesthetic .... if you love puzzle books, get some in stock!
Here's the Reclaim your Curves link re what to take to hospital, & other topics like considering reconstruction etc (just download the ones you'd like to keep & read.)
https://www.reclaimyourcurves.org.au/information-sheets.html
And also consider listening to Charlotte Tottman's podcasts - they are terrific. She is a psychologist who's undergone a double mastectomy - and her podcasts are just so easy to listen to, with little nuggets of wisdom throughout, as she totally 'gets it' - as she's been thru it herself. Start with Season 1 ....
https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/
Just wondering - have you considered taking some 'before' and 'after' pics, for your own record? It sounds sort of 'weird' - but my brother actually suggested it for me the day before my surgery and I did it - I just took some myself with my phone. ... but Charlotte Tottman had a professional take some pics (B&W) and was really pleased that she had.
If you have any queries, feel free to chat with our helpline too on 1800 500 258 (Mon-Fri) and they will also be able to help you.
take care & all the best xx. Keep busy in the mean time, doing things you love doing .... as your mind will be going round in circles ..... this diagnosis mucks with your brain even more than you body xx
Here's the Reclaim your Curves link re what to take to hospital, & other topics like considering reconstruction etc (just download the ones you'd like to keep & read.)
https://www.reclaimyourcurves.org.au/information-sheets.html
And also consider listening to Charlotte Tottman's podcasts - they are terrific. She is a psychologist who's undergone a double mastectomy - and her podcasts are just so easy to listen to, with little nuggets of wisdom throughout, as she totally 'gets it' - as she's been thru it herself. Start with Season 1 ....
https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/
Just wondering - have you considered taking some 'before' and 'after' pics, for your own record? It sounds sort of 'weird' - but my brother actually suggested it for me the day before my surgery and I did it - I just took some myself with my phone. ... but Charlotte Tottman had a professional take some pics (B&W) and was really pleased that she had.
If you have any queries, feel free to chat with our helpline too on 1800 500 258 (Mon-Fri) and they will also be able to help you.
take care & all the best xx. Keep busy in the mean time, doing things you love doing .... as your mind will be going round in circles ..... this diagnosis mucks with your brain even more than you body xx
arpie
1
Re: need to connect
Hi @Lozz
Totally relate to the random crying thing
For about 4 weeks after my diagnosis I cried at completely random times and places ( luckily I was able to take time off work).
Like at the checkout in the supermarket.
And I am not normally a cry baby.
I did have a couple of sessions with a psychologist who specialized in cancer related distress and one of the best things she said to me was “ it’s ok to cry”.
As time has gone by the crying is a lot less but things can trigger it ( I never noticed how many “ cancer breakthrough” stories appeared on tv until I found myself in “ the club”).
Things will get better .🌺
Totally relate to the random crying thing
For about 4 weeks after my diagnosis I cried at completely random times and places ( luckily I was able to take time off work).
Like at the checkout in the supermarket.
And I am not normally a cry baby.
I did have a couple of sessions with a psychologist who specialized in cancer related distress and one of the best things she said to me was “ it’s ok to cry”.
As time has gone by the crying is a lot less but things can trigger it ( I never noticed how many “ cancer breakthrough” stories appeared on tv until I found myself in “ the club”).
Things will get better .🌺
Re: need to connect
Thank goodness I decided to post!! I can’t believe how caring, supportive and helpful you all are. Till now I felt like I was the only person going through this litany of feelings and emotions but now I see that there is life after a BC diagnosis and that for some time it will be tough and though the future may be “different” it will still be great. Thank you beautiful wonderful ladies. I’ve now understood that I have to ditch the guilt and get on with making me number 1 for now. Thank you all. 😘😘😘😘😘
Dessi
8
Re: chemo question please?
Oo @Maree72 I found something that might be of Interest,, I haven't read it yet but lol but hope you might have time...
https://www.komen.org/breast-cancer/treatment/issues/genetic-testing-after-a-breast-cancer-diagnosis/
Hope the link works 😃
https://www.komen.org/breast-cancer/treatment/issues/genetic-testing-after-a-breast-cancer-diagnosis/
Hope the link works 😃
Tarma
1