Dear Nat,
Yes, you have to be on your toes with medics, always question, question, question - though it ain't easy when you are stressed and distressed. My dad was labelled nil by mouth and do not resucitate cos he had inoperable stomach cancer and had suffered a heart attack during his second bout of chemo. We weren't asked our permission for the do not resucitate, we were just told. If I ever face that again, I will refuse to accept it, cos my dad bloody knew what the label meant and he wasn't ready to go. He lived another 18 months after that night, was still driving after 16 months, possibly 17. There were plenty of medics who told us it would be kinder at the time to let him go, cos the cancer was inoperable and he would suffer a long and painful death - but he didn't. We didn't have to choose, thank goodness, my dad chose to live. When the time came for him to die, we all knew it had come, but it came on rapidly, until a week before he died he had been able to walk and look after himself at home with mum, laugh, and although he knew he was very ill he coped. He spent just one week in the hospice having suffered nothing more than "discomfort" the whole time since his initial diagnosis, and passed away in minutes. Sadly we weren't with him. The hospice was 25 miles away and only 30 minutes before he died they phoned to say he was asking for my mum, but there was no urgency, they said. Somehow I knew there WAS, so I went straight to her house to get her, and by the time I got there he had gone. He made his own decision, it seems, as to when to go. But we had 18 good months extra with him since that dreadful night.
Re the fluid on the lungs and food problems, my daughter's boyfriend's mum has MS (of an unusual variety). Over the past year she has lost the ability to speak, then to use her arms, and eventually she started swallowing food into her lungs. She was hospitalised about 3 months ago, and the family gathered to make the same decisions that you had been faced with (though no surgical procedure was offered). She is totally immobile, but mentally completely alert. They chose the option to continue with the treatment in hospital to keep her alive. A remarkable recovery ensued and she simply stopped taking food into her lungs. No-one appears to know why, but she did. So she is back at home where she is loved and cared for by her husband and regularly sees two of her three sons, and is comfortable again. The family are looking forward to another Christmas with her.
So, Nat, and anyone else reading this, never believe what options you have, always ask if there are others and what the consequences will be. Of course, there might be a point when we know in our own hearts that nothing more can be done and the end is imminent, but there are just as often those points when we aren't quite sure, and I believe everyone has a right to take advantage of those if it is right for them.
Good luck, I wish you well. Yes, I shed a tear or two at your courage.
Much love
Margaret
