Hi all,
I am new to the group, today I really struggled with my own emotions and this is why I decided to join the group.
My mum has been living with stage 4 lung cancer that’s metastasised into her spine. She was diagnosed last April that this was incurable. She decided in the June to have radiotherapy but not to take the chemotherapy.
The consultant indicated that she would potentially have 12 months with out treatment and over the last month I’ve seen a decline in her, we are caring for her at home with the support from the palliative care team who are amazing, however the last few weeks I’ve struggled with not knowing how much time we have left. I totally appreciate know one really knows and my mum is amazing and has a fantastic outlook but she can look fantastic some days and then others she can look terrible and so weak.
does anyone have any suggestions to help take my focus away from how long we have and back to appreciated every day one day at a time?
thank you x
Hi SJAY75 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and I'm sorry to read that your mum has incurable lung cancer.
The online community is divided into different support groups so I'm going to recommend that you join the supporting someone with incurable cancer group, which is for anyone who has a loved one with an incurable diagnosis. There you can discuss your emotions as well as practical issues about palliative care and end of life.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
If you have any problems navigating the community just reply to me and I'll be pleased to help.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi SJAY75
I just wanted to offer my support and tell you I 100% understand how you must be feeling.
i also wanted to ask if your Mum has been offered targeted therapy.
I also have Stage 4 NSCLC with spine mets and it’s also in my lymph nodes and I have Lymphangitis (inflammation of the lymph vessels) My cancer is incurable and inoperable.
I was tested for the EGFR mutation and found to be eligible for targeted therapy. I have a daily chemotherapy tablet, Osimertinib (very few or no side effects) and a monthly injection Denosumab for my bones.
I'm only a few weeks in and living my life as normal and I know if I tolerate this drug it can buy me years.
If your Mum hasn’t been offered this she might be eligible for it so you could try suggesting to her that she ask her oncologist if she can be tested for it. She won’t be sick or lose her hair on this if she’s eligible. There are a lot of side effects but most people don’t get many at all on this.
It won’t cure her but it can slow down the cancers growth and even shrink her tumours.
If she doesn’t have the EGFR gene there are also other treatable gene mutations.
Normal chemotherapy isn’t the only answer, there are lots of treatments out there.
in the meantime try and stay strong for her…
When I said that I understand how you must be feeling, I totally do and it’s the hardest thing to cope with, watching someone you love go through this. 9 years ago I saw my dear Mum through her incurable inoperable Oesophageal cancer.
I was brave and so was she.
I spent months putting on a brave face for her and crying all the way home every night.
It’s all you can do for them, be as brave as you can be
You’ve got this girl I have every faith in you, like I said, I’ve been there.
sending positive vibes to you and your precious Mum
Hugs 
Jools ♥️
