Deep breath!
Hi there,
First time I've ever thought about doing this, so here goes. I'm a 26 year old female with three brothers aged 25, 23 and 20. My mum, 54, was diagnosed with triple negative breast cancer in July last year. She was healthy, and noticed a lump. It turned out to be two tumours with lymph node involvement, including a supraclavicular node. For that reason, it was considered an early stage IV, grade 3.
She had six cycles of dose dense AC followed by another six cycles, a mastectomy and lymph node clearance and then more chemo. She then had five weeks of daily radiotherapy which she finished three weeks ago.
Last week, she got a migraine. Not unusual - she has always had them. But it didn't go away. She went to hospital and a few CT scans later we were told she has six lesions on various parts of her brain that are mets.
The onc confirmed what Google has told me about the poor prognosis for multiple brain mets. She starts ten days of WBRT on Monday. Even so, we're talking about months to live.
I can't quite believe it. Mum is not yet aware of the timeframe, and we're glad about that. She will know soon enough, and the GP/onc have confirmed it's a good thing not to say anything while she's undergiong treatment.
I'm not sure what I'm looking for here... someone to talk to? I'm worried about my Dad, my brothers, how I'm practically meant to function when all I can think about is how I want to be with my mum while she's living and dying. I still need my mum; who stops needing their mum?! How am I meant to say goodbye to her?? My heart is breaking.
Comments
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I am so sorry to hear about your mum. You have come to a good place here for support.
Brain mets are diffcult but not impossible to treat. Don't give up hope but yes, keep reality in mind too. Statistics are just statistics - your Mum is your mum - remember that. Love her, treasure her, be there for her. She needs you.
A x
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Thank you so much for your kind words... I appreciate it X
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There is an Advanced Breast Cancer group on this site but I am not sure if family members can join? Only those living with ABC would really be helpful in my mind.
So sorry that you are all having to go through this.....what a horrible time for you! But please make sure that you spend time with your mum and cherish the moments that you have together. I hope she still has many many months left in front of her and that she continues fighting through her treatment.
Best wishes,
Louise
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Hey RochelleWhat a beautiful name for an obviously beautiful person. My daughter's middle name is Rochelle.Your mum is so lucky to have you in her life as you obviously love her dearly.There is little words to say to help how you are feeling. I know how hard it is for us, to not know what to do when you have a loved one so ill. You have taken a very positive step by coming on to BCNA network as we are here to give you support and any advice we can should you need it. I hope it helps just to know we are here for you.Like lovely MandaMoo said don't give up hope yet precious and just be there for your mum and your family. I am sure she would want you to be enjoying the time with her the best way you can. She is so lucky to have so many people around her that love her as you obviously do.Take care and lots of warm and loving hugs coming your way.Lots of love, Mich xoxo0
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Hey RochelleWhat a beautiful name for an obviously beautiful person. My daughter's middle name is Rochelle.Your mum is so lucky to have you in her life as you obviously love her dearly.There is little words to say to help how you are feeling. I know how hard it is for us, to not know what to do when you have a loved one so ill. You have taken a very positive step by coming on to BCNA network as we are here to give you support and any advice we can should you need it. I hope it helps just to know we are here for you.Like lovely MandaMoo said don't give up hope yet precious and just be there for your mum and your family. I am sure she would want you to be enjoying the time with her the best way you can. She is so lucky to have so many people around her that love her as you obviously do.Take care and lots of warm and loving hugs coming your way.Lots of love, Mich xoxo0
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Very difficult news, so unexpected. The road is hard and I cant imagine what you are going thru. My daughter is 14 and may not have me one day. I push on with hope being as well as I can.
Reality is important but doctors get it wrong all the time, they are not God. I was told 18 mths, now it 21/2 years and I consider I am going well. Hearing prognosis is not always benificial to the individual. But rather give honest information about how advanced the cancer is.
Accept the support of caring counsellor if it helps you thru this journey. I love the mentoring I get thru it.
OTIS have holiday retreat avail for families to take time out(no charge and beautiful). Have a look at their website.
Living in the present is the healthiest thing to do. Try not to work out how to cope with things in future as that is a burden too heavy for anyone to bear
Seek support where ever avail, let friends and family know how they can assist in anyway.
Xx
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Very difficult news, so unexpected. The road is hard and I cant imagine what you are going thru. My daughter is 14 and may not have me one day. I push on with hope being as well as I can.
Reality is important but doctors get it wrong all the time, they are not God. I was told 18 mths, now it 21/2 years and I consider I am going well. Hearing prognosis is not always benificial to the individual. But rather give honest information about how advanced the cancer is.
Accept the support of caring counsellor if it helps you thru this journey. I love the mentoring I get thru it.
OTIS have holiday retreat avail for families to take time out(no charge and beautiful). Have a look at their website.
Living in the present is the healthiest thing to do. Try not to work out how to cope with things in future as that is a burden too heavy for anyone to bear
Seek support where ever avail, let friends and family know how they can assist in anyway.
Xx
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So beautifully said Anne Maree.Mich xox0
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Hi Rochelle
I read your story and felt a sadness in my heart. I am 34, and my mum passed away in 2009 when I was 30. She started off with breast cancer, however then had tumours on her brain and then cancer on her spine and liver. I have two brothers, one 3 years younger than me, the other 5.
Having been through what you're going through all I can say is cherish the time you have with your mum and your family during this time. It's a special time where family pull together and share their love with each other. Tell your mum all the things you want to say. Make sure your brothers do too. Keep her spirits high and make her laugh - it will be the best thing for her.
The sadness will be ever present, but it will make you strong as a person.
My thoughts are with you and if you need to talk at all please just drop me a line.
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Hi Rochelle
I read your story and felt a sadness in my heart. I am 34, and my mum passed away in 2009 when I was 30. She started off with breast cancer, however then had tumours on her brain and then cancer on her spine and liver. I have two brothers, one 3 years younger than me, the other 5.
Having been through what you're going through all I can say is cherish the time you have with your mum and your family during this time. It's a special time where family pull together and share their love with each other. Tell your mum all the things you want to say. Make sure your brothers do too. Keep her spirits high and make her laugh - it will be the best thing for her.
The sadness will be ever present, but it will make you strong as a person.
My thoughts are with you and if you need to talk at all please just drop me a line.
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Annie I'm so sorry to hear you've been through this. Thank you for sharing it. I do feel that there is much grief ahead, but also much joy. Even since Mum was first diagnosed, my family has had some of the most special moments we've ever shared. I know these next months will hold a special place in my heart, as it sounds your time with your mum and family does for you.
X
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Hi Rochelle,
I just wanted to jump in and add to what the other ladies have so beautifully said and let you know that we (BCNA) will be holding a free information forum in Brisbane for those living with a secondary breast cancer diagnosis. So, you might want to attend to hear about the latest in breast cancer treatment and care and connect in with other family members going through what you are.
- You can register for the free forum (Living with secondary breast cancer) here: http://www.bcna.org.au/bcna/event/bcna-forum-brisbane-living-well-secondary-breast-cancer
Also, Anne Maree mentioned above The Otis Foundation - this is a great support service for you to connect in with. You might want to take your mum away on a retreat with the family and spend some quality time together. You can find more inforamation on this free service through the website: http://www.otisfoundation.org.au/
Please let me know if I can help you in any way.
Best wishes, Daina
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Hi Rochelle,
I just wanted to jump in and add to what the other ladies have so beautifully said and let you know that we (BCNA) will be holding a free information forum in Brisbane for those living with a secondary breast cancer diagnosis. So, you might want to attend to hear about the latest in breast cancer treatment and care and connect in with other family members going through what you are.
- You can register for the free forum (Living with secondary breast cancer) here: http://www.bcna.org.au/bcna/event/bcna-forum-brisbane-living-well-secondary-breast-cancer
Also, Anne Maree mentioned above The Otis Foundation - this is a great support service for you to connect in with. You might want to take your mum away on a retreat with the family and spend some quality time together. You can find more inforamation on this free service through the website: http://www.otisfoundation.org.au/
Please let me know if I can help you in any way.
Best wishes, Daina
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Hi Rochelle,
I just wanted to jump in and add to what the other ladies have so beautifully said and let you know that we (BCNA) will be holding a free information forum in Brisbane for those living with a secondary breast cancer diagnosis. So, you might want to attend to hear about the latest in breast cancer treatment and care and connect in with other family members going through what you are.
- You can register for the free forum (Living with secondary breast cancer) here: http://www.bcna.org.au/bcna/event/bcna-forum-brisbane-living-well-secondary-breast-cancer
Also, Anne Maree mentioned above The Otis Foundation - this is a great support service for you to connect in with. You might want to take your mum away on a retreat with the family and spend some quality time together. You can find more inforamation on this free service through the website: http://www.otisfoundation.org.au/
Please let me know if I can help you in any way.
Best wishes, Daina
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Thank you Daina and Di for your very helpful suggestions - I'll look into those resources and that support right away xxx
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