Hello everyone
i am 69 years old and dying of oesophageal cancer. It has spread to my rib so palliative chemo started 3 weeks ago. (Paclitaxel with more chance of being ineffective than beneficial and 100% of side effects).
I am so frightened of the future. I’m not in pain yet. But the therapy has wiped me out and it is only going to get worse either from the disease itself or from continued chemo.
I have enquired at a private care home to see if they could look after me when I feel I cannot get by on my own. They can.
Has anyone else gone down the private nursing home route?
I have tried to enquire what NHS will do for me. All responses with the caveat of how underfunded they are and always a different department. Such that I have no confidence. Are any of you living on your own being helped with end of life by NHS and is it working out?
Further to add to my concerns I nursed my husband when he was dying and know how much was needed. Even organising visitors being prepared for visitors. It just doesn’t work when one is on one’s own.
thank you for reading. Any suggestions welcome xxx
Hello Rosiee
Welcome to the incurables group. I am sorry your cancer has now spread to your ribs. I read your profile and appreciate this gives you insight and perspective on your situation. I also have metastatic cancer but a different story. Tnbc and liver mets in my case. I have had a couple of encounters with paclitaxel too. It’s widely used in breast cancer and a lot of the women on the breast cancer pages tolerate it quite well. Relentless is how I described it as it was a weekly treadmill of feeling not quite right then recovering ready to start again. I always think it is worth trying a treatment as you can’t predict who will benefit and who will get side effects. I hope it is more beneficial than ineffective for you, and that your side effects are ok.
i have experience of my brother in law dying of metastatic pancreatic cancer. I think his big mistake was that when he decided after one round of chemo it wasn’t for him, he told oncology that he didn’t want any more, and was dispatched back to his GP. After that it was a mess of poor support. Lack of co-ordination between GP, district nurse support and hospice, and eventually finding he couldn’t get into a hospice until it was almost too late. With hindsight if he had told oncology he wanted a break and to stay on their books, he would at least have kept access to the 24 hour emergency acute oncology service. They were my lifeline during some of the difficult periods of my own journey.
I think you will know when you are reaching a point of needing more care. It will hopefully be much further in the future. If I lived on my own, I don’t think I would leave it to chance.
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