I guess this a place none of us want to be.
I’m sat in my garden crying trying to process recent information of my dad having a terminal prognosis of adeinocarcinoma egfr exon 19 deletion.
It first started a couple of years ago and he was the first UK person on a global Astra Zenica trial. He was an absolute trouper and managed chemo and a partial lobectomy well. He was on osimertinib and we’ve had an amazing couple of years going on holidays and my dad playing bowls that he loves. Just perfect.
Until the cancer returned and spread to nodes in his pleura. By Wednesday we need to decide if he wants to go on a clinical trial with Dato-DXd or just gave chemo. So much to get my head around and it has been made clear we can get treatment but it’s palliative care now.
There is so much going on and I realise how many people are fighting their own battles, or supporting loved ones going through this.
In summary I think it boils down to 3 questions:
1. Has anyone got experience of Dato-DXd? Am keen to hear as it feels a risk v reward time and I don’t want my dad to unduly suffer
2. How do you help someone best deal with a terminal prognosis and get best quality of life?
3. How on earth do people cope with all this anxiety, overthinking and just feeling overwhelmed by the future? I’m questioning everything I’ve planned, whether I need to give up my job, what the timeline looks like (it’s likely 6-12 months unless my dad responds well). Does anyone else feel guilty, worried, lost in how to best navigate thus uncertainty?
Thanks to anyone who reads this. I know so many are having a tough time. I hope by sharing experiences we can support each other and, in turn, our loved ones.
Hi JayneL00ce6b
Welcome to our community, I hope you find it both informative and supportive.
Sorry I have nothing to share on your first point since my wife's cancer is very different as she has Leiomyosarcoma
With my wife's cancer something I found out was about looking after myself if I wanted to be in the best position to look after Janice. Something that really helped me was a living with less stress course with Maggies in that it helped me to live more in the here and now rather that worrying about a black future that I had no control over. One quote I quite like on that front is "Worrying doesn't take away tomorrow's troubles; it takes away today's peace." — Randy Armstrong
Another element in the course was on conscious breathing, this I found useful when life decides to throw us another curve ball but also in helping me relax and get some sleep.
<<hugs>>
Steve
