My husband has been fighting this disease for 8 years now. He has had all the treatment he can have, and now has been, I think, abandoned. He has had 2 face to face consultations in the last 16 months. This morning he had a telephone consultation, which confirmed the tumours in his lymph nodes are getting bigger, tumours in his vertebrae are becoming more active, very fatigued and psa has gone up considerably. The doctor has said it is up to him if he has more scans. Next telephone consultation in 3 months. I feel that we have been abandoned. Has anyone else experienced anything similar.
I wanted to go off this list but somehow I am still here and so I think it is perhaps meant to be.
I am so sorry to hear how so many feel abandoned by their oncologists and hospitals and how difficult it is not to know what the next step could be in treatment.
My husband had prostate cancer for 15 years. He had first line, second line and third line hormone treatment, then Abiraterone, and when Abirateron lost effect his cancer spread to his liver and he had 10 months on Chemotherapy during which I was his sole carer before passing away peacefully at the hospital where we had gone for treatments for so many years. If there is anything any of you think I can help with, just by sharing my experience here, please ask. I remember only too well how difficult it was to not know what would be next and if there would be more treatment options. It was draining for both of us.
Lots of love
I don't like the term "moving on" because it sounds to me like we are leaving our loved ones and the life we had with them behind. I like the term "moving forward" as it implies that, while life goes on, our loved ones are still with us in our hearts and minds.
Billpayer here! It is not a tale dissimilar from my own!
I was diagnosed with PC in 2006/7, hormone treatment followed, and eventually a prostatectomy in 2017 with Lymph nodes infected and some removed. Hormone treatment continued until PSA was out of control and a chemo course proposed in Jan 2017. 4 sessions later the decision was taken by myself and Consultants to stop before it killed me!
The cancer is in my bones and I am now under pain management, which leaves me comfortable. No one will give me an idea of "remaining time", so I'm trying to enjoy family time as best I can.
Having carried the disease for 14yrs+ I cannot say I have fought it! If in conversation with anyone I would often say "you wouldn't know there was anything wrong with me."
I am having difficulty coming to terms with my life is nearly over! I am a young 70-year-old with a full list of interests and a young 2.5 yr old grandson to spoil. I can breakdown with very little effort when speaking to friends. All fully understand but I still find it more than embarrasing.
I hope you can find some sort of comfort in this Liz?
There are so many stories, very similar to yours and my husband’s. Like you, we have grandsons, which bring a lot of joy to my husband. He has been referred to the local hospice for pain control, and I hope this will make life easier.
Take care, and enjoy your family.
Thank you so much for your advice x
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