I am sorry to ask about death when all here are fighting for life. You are all amazing warriors and I hope you can forgive me. My loved one wants no treament. I read a lot about treatments, and how terribly difficult they are, not so much about what to expect about disease progression, and palliative care for someone not receiving curative treatment. Is adequate pain management possible? Nutrition when he can no longer eat? Please tell me everything I should know to help make him as comfortable as possible.

Your post did not say whether your partner has had any treatment at all. My husband had cancer in the base of tongue (oropharyngeal). He had radiation and two doses of cisplatan. There were various kinds of complications from treatments like DVT in both legs and his esophagus was closed by scarring.

However, when the cancer metastasized, John was given a chance at immunotherapy. It was at that time a Phase 1 trial. When it did not work for him, he was given Taxol/Carboplatin. Following, he was enrolled in a Phase 2 trial of Selinexor, which weakened him and it was discontinued. John also had a new procedure done to open up his esophagus. As far as I know, up to 2019, he was still the only person who had had received this procedure. The procedure was successful and he was able to eat soft foods by mouth. Unfortunately, he then developed silent aspiration which caused him to be hospitalized for pneumonia. After he came home, he had a fall which resulted in a hairline crack in one of his ribs. It hurt but was not serious enough to put him in hospital. At that point, he was in palliative care at home. He was prescribed codein (if I remember correctly, it was 1/4 or 1/8 teaspoon only) for his pain. Then he developed pneumonia again and eventually, he passed from pneumonia.

John never gave up. He would take whatever treatment that was offered. He was never in a lot of pain except when he cracked his rib. As a caregiver, I could see he was becoming progressively weaker. It was like he was slowly slipping away. There was a lot of managing on my part — the daily injections for his dvt, the meals, the meds (whether they could be crushed to be put in his feeding tube) or if there was a liquid form of the prescription since he had difficulty with swallowing, the postural hypotension when he could pass out at the most inconvenient places like the parking lot, the medical emergencies when I had to take him to emergency. Like you, I was determined to keep him comfortable. However, he complained constantly about not being able to drink even a sip of water after he developed silent aspiration. Despite being quite sick, he was still an individual with his own mind and wishes. I felt it was important to respect that.

I don’t know if this is the kind of information you’re seeking. Whether your partner chooses treatment or not, it will be a bumpy road ahead, and it’s not just the pain. The body, I far as I could tell, slowly breaks down. There will be the loss of interest in even the basic things in life, like watching TV or reading the papers because the body is so weak.

I cannot tell you or your partner what choice to make, but not choosing treatment may not mean the end would be quiet and easy even if the pain’s under control.

gmcraft, I have a question about the experience of your husband -- about how long was the time period from when you discovered the cancer had metastasized to when he eventually passed away?

My father was diagnosed in Sept 2020. From the chart: He is a 77-year-old gentleman originally diagnosed with Stage III (T2 N2a M0) keratinizing squamous cell carcinoma of the left tonsil, P-16 positive.

He received chemo and radiation but has been having trouble with necrosis of the throat tissue, making it hard to speak or swallow. He was taken to the ER this weekend due to severe bleeding in throat (hemorrhage) that is connected to the necrosis. The MRI results of his throat have been inconclusive as to whether it is a new tumor or severely inflamed tissue from radiation. They will be doing more testing, but strongly suspect recurrence. He is still in hospital but they expect to discharge him shortly and follow up at a cancer center (U of Miami). His vitals look fine except for low hemoglobin from losing so much blood from the hemorrhage.

I live several states away from my dad (I'm in NC and he lives in Florida) -- and I would like to be with him when he needs me. He does currently have a support system in his wife and her children (my stepsisters). My plan is to get my son off to college in mid August and then head down to Florida for several weeks.

I just can't tell if I'm being overly optimistic that he can hang on until I get down there. Or if I should scrap all my plans and drive there now.

I know you can't advise about his specific situation. Just wondering how long the downfall was in your case -- so I can weigh that against what I'm hearing from my stepmother (who thinks it should be ok to wait a few weeks to come down).

Jabberwocky, if you look at my signature, you will see that my husband was diagnosed in 2012 and he passed away in 2016. When he was diagnosed, he received chemo and radiation. However, six months after the rads ended, a scan showed that the cancer had metastasized to his left lung. At that point, we were told that there wasn’t anything the doctors could do. That’s why he got into an immunotherapy trial which lasted about six or seven months. It didn’t work for him and he got into a different trial. When that was discontinued, he received oral chemo at home. He was in palliative care at that point. The whole journey ended up being close to four years.

I think the best thing you and your stepmother can do is to ask the doctor what your father’s prognosis is. The doctor will tell you if you ask. When my husband was put into palliative care, the doctors told me that he had three short months left, give or take. It is hard for us lay people to estimate because so many different things can happen. With my husband, it was a fall at home and pneumonia because of his swallowing problems.

BTW, a few years ago, someone on the forum mentioned that she was told to switch to dark colour towels at home if bleeding was going to be a problem because it would make the bleeding episode easier for the caregivers.

You are a very caring daughter to your father. I’m sure he would appreciate your support. Caregiving is tough but when we are “called” we all put on the mantle and learn as we go along. You should give yourself a pat on the back. You fully deserve it and more.