Thank you everyone for your kind words of support and for your ability to recognize how profoundly painful this situation is. It really helps me to feel connected and not alone.
At present, I feel cornered, trapped. I don't want to witness my partner's death. I don't want to see a dead body and I don't want to see the body fight for life. I don't know how a person dies whose lungs are filled with cancer. What will it look like? I don't imagine its a pretty sight. I don't want to witness this kind of suffering. Yet, I cannot and will not leave him in his last moments. There is no way out of this. It plays on my mind all the time. My partner got angry when I tried to bring the topic up. Bad idea.
I am finding my interaction with the hospice counselor leaves me feeling worse rather than better. Found myself trying to get her to understand that I'm not a good cook. We ended up arguing over this....dumb and irrelevant and such a waste of time. Its not emotionally safe to share my fears with her. I am beginning to really understand the issues around the legal fight for the right to a doctor assisted suicide.
My partner will not access any emotional help. He expresses himself through ranting. He complains about everything and nothing...constantly. He yells at the squirrels and yells at the red lights and yells at the drivers and yells at the weather. It is constant and I get exhausted from hearing it. It feels like a physical blow to have to absorb it but knowing that this is how he expresses the pain keeps me from saying anything and I am vigilant not to feed the fire.
Lately, though I've noticed he has redirected this anger my way. At first I thought it was my fault but I was so angry myself I argued back at him and then noticed this wasn't about anything that I've done. He's getting mad at the way I cook soup for myself or what I'm watching on tv or if I don't answer a question in the right tone of voice. It was okay when he was railing at the world but its not okay to have the anger spotlight on me. Frankly, I'm quite concerned. I don't want this to escalate or grow into something abusive but I don't know how to stop it either. Hopefully, it doesn't go any further.
He hasn't made up his mind about the vitamin c therapy. The hole in his mouth where the jawbone is exposed from the radiation is driving him mad from pain. It can't be fixed and may not ever heal, we are told. They can't use the hyberbaric chamber because the oxygen might set the cancer in his lungs to grow. They can't do a graft because the anaethesia might set the cancer to grow. We begged them to construct a barrier so that the exposed jawbone no longer shreds his tongue.
I can't even begin to describe the interoffice/interdepartment fiasco/circus that little request set off this week. Hopefully, after waiting a month for two dental offices to finally figure out how to coordinate an appointment to tell us nothing can be done, it won't take another month for them to get through their policies and paperwork and "who said whats" to build him a functional barrier between his jawbone and tongue.
This horrific wound was caused because the xray technician would not take the extra 30 seconds to place an xray tab properly despite my partners protests that it was hurting him. The xray tab cut a slice in his mouth that didn't heal properly in time before they threw him into 33 radiation treatments. Even through the treatments we kept pointing out to the dental office that the cut was still there and was not healilng. Even though they wrote it down in their notes it seemed like no one heard us and they have never acknowledged its origin. It certainly wasn't communicated to the radiation team that they had cut his mouth. We had no choice but to go to this "specialized dental" office before the radiation treatments so they could look for any cuts, abrasions, and necessary dental work that would need to be taken care of so that nothing like this would happen. I don't know if it was uncaring or incompetence or both that caused this. Needless to say, my partner has zero trust and a lot of fear when dealing with them.
Thank you for this place to vent and to share my fears and pain.