Hi. Hope everyone is OK. I am not quite sure what I am posting for, or what I am hoping to achieve.........but I am struggling with my mums recent diagnosis of incurable cancer, and i am probably looking for answers that are not even out there 😪 Maybe I just want to chat, or hear how other people cope with such news.
My mum is only 56 years old, and she found a large lump in her breast in December just gone. She also had approximately 8 solid lumps in her abdomen area. She attended her first appointment at the breast clinic on the 4th January, and they completed scans and took biopsies of all the lumps. The results were what we were all dreading. All lumps came back as cancerous, so we already knew at this stage that her cancer had already metasised to the skin and lymphnodes. We were, and are all devastated. She then had a full skeletal scan and a CT scan..........this then revealed that her cancer had not only metasised to the lymphnodes and skin, but that it has also metasised to the stomach and kidneys. This has also caused ascites to grow in the tummy region. On the 4th February, the oncologist sat with us and told us the heartbreaking news. She has stage 4, incurable cancer, and they informed us that the cancer is very, very extensive, advanced and has already caused ascites. They said they are very concerned. They informed us, that without treatment, she only has a few months to live, and if treatment doesn't work, also a few months to live. They didn't feel she was physically fit enough to have chemo, so she has recently started immunotherapy. A new pill called KISQALI, 600mg daily. However, they won't be doing any scans for 3 months to check what is happening. My concern is, that if it isn't working, and she only has a few months to live, we have no time left to try something different 😪
Since finding the lumps initially in December, the 8 lumps in the abdomen area have multiplied significantly.......in excess of 20. She has tiny ones in her neck, chest and groin also. My mum had a gastric bypass in 2017, therefore she is really struggling to eat etc, especially since starting treatment. She is really struggling to accept what is happening.
My mum is my best friend. I see and speak to her everyday, and always have done. I cannot imagine her not being here. It's killing me, it's making me ill. I am on medication and in regular contact with my GP. Seeing her makes me cry 😢 but I try to be strong. She is well in herself, as well as she can be considering her pre existing medical issues.
I cannot cope with not knowing 'when'. I know that may sound selfish and weird, but I have a massive need to know.......and I am also aware that that answer probably isn't out there, but I truly cannot cope with all this. I have googled everything, and we all know we shouldn't do that, but I have searched high and low, and I keep reading that once you have ascites, which my mum has, it means you are nearing the end of life. Does anybody know this to be true? Has anybody known anyone to survive more than a year with cancer as extensive as my mums? Can anyone share anything with me that may help? How does everyone else cope with this heartbreaking situation we find ourselves in? I just don't know what to do and how to cope, never mind how to cope when the inevitable happens 😪 How do you know when the time is near?
Thank you for taking your time to read my post, and many thanks in advance for any response.
Take care xxx
I'm very sorry to hear of your Mum's diagnosis. I hope she has positive outcomes with the immunotherapy.
One reason why they wait 3 months to do scans is because there can be alot of psuedogrowth within the first couple of months of any treatment. Its like the tumours are putting their all into staying in the body, so they grow a bit quite rapidly, before they shrink.
With your Mum having difficulty eating food, a dietitian can prescibe fortified drinks similar to Sustagen, to help her keep up a nutritional intake. Her oncologist can give her a referral to a dietitian, along with referrals to others she may need to see eg social worker, palliative care nurse etc.
It wouldn't hurt you to speak with a social worker as well, or someone from the Cancer Council on 131120. Talk with your Mum too, & the rest of your family. Talking helps alot.
There are lots of info booklets on this website - a valuable source of info. I've included links to a couple I think you could benefit from looking at.
The End of Life stage is where the body starts shutting down, the person sleeps more, breathing becomes slower etc; you'll definitely know when that time comes, but your Mum has alot of living to do before she gets to that point. And, depending on her attitude, she could live for quite a while yet.
All the best
This is such a difficult and heartbreaking time for you. Joining our Life Force Cancer Foundation Carers’ support group could help you manage it all in the best possible way. By sharing with others going through a similar experience, you can find solace and comfort as well as tips that can help. Being supported to deal with your own feelings of grief and pain can give you strength to better care for your dear mum. By looking after yourself you are in a better position to care for others. Do reach out to Life Force. Call Jane on: 0412 643 751
We’re here to help. www.lifeforce.org.au
Feel free to give me a call: jilly 0408 610 362
Life Force Cancer Foundation
I have just joined this service as I am experiencing the same problem as you my mother has stage for I’m a static breast cancer and is also my best friend that has been a long slow process and it’s like a rollercoaster it started off with the length and in her breast with lymph nodes they noticed spots on her spine and back but never process further testing she’d had surgery chemo and radiation and his on her main therapy tablets recently added her getting sicker and sicker and we just found out it is now in her bones and bloodMy family lives far away and her partner does not help at all my biggest fear is also losing my mother and it’s very draining and isolating and some people just don’t understand how you feeling just know that it’s okay to feel like this and it’s okay to be scared you’re doing the best you can do and you’ve done the right thing by joining his support service if you would ever like to talk I’m happy to chat sending you love
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