Mar,
If you get an opportunity, please read through the thread discussion I started back in December (Refused all treatments) in this same forum.
My mom chose to do nothing when diagnosed with oral cancer in March, 2006. In golfer terms, she is long into the back 9 (I fear on the 18th tee about now)... Two different doctors diagnosed her as level T4 cancer. No procedure was done (not even a biopsy).
The one thing I have learned from talking to the hospice nurse and caregivers is everyone is different. The cancer location matters. The direction it grows matters. That combination makes it difficult to predict.
My mom's tumors were originally pinpointed to the roof of her mouth (pallet), right side of her head and back of her throat. They also noted two unknown masses on her lungs. As you will see from my thread, her main problem now is difficulty in eating (she has severe pain when chewing). Her cancer seems to be mainly attacking the right side of her head. This is one of the few positives so far (since my mom is a side sleeper and can still sleep on her left side).
Her pain points in no particular order are presently:
1) Right ear pain at times (knife stabbing type pain). Significant at times but is controlled by the Vicodin.
2) Right jaw bone. Chewing is painful. Her eating ritual involves taking out her dentures and applying pain gel. Then putting her dentures back in. She is now limited to very soft foods.
3) Nasal flaps failing to close when she swallows. This forces fluids back up the nasal canal and out her nose. Given all the frustration in eating, this one is the most aggravating for her.
4) Limited passage when swallowing... My mom cannot swallow pills (must be liquid form). Also, anything larger than a piece of corn will not pass down her throat... She is mainly eating soups and her ice cream... Ensure drinks sit in her fridge until they expire. She refuses to drink them claiming my dad didn't like them so she will not drink them (amazing...).
5) Her voice... She hears echoes in her head whenever she speaks. Not pain, just annoyance... To me, she sounds as though she has a bad cold.
6) The most recent growth area is the right side of her neck (straight down from the ear). This new location is extremely painful to the touch.
My mom's cancer did not spread to her tongue. Although, since she cannot open up her mouth wide enough to see, it may have spread to the tongue but we just don't see it.
My advice is to focus on the past and immediate present. Try to eliminate dwelling on the future. He will need hospice nurse visits. Initially, my mom had the nurse come once per week. They are wonderful people. I need to stress one thing... When I said focus on the past and immediate present, I was mainly talking about you... As the full time family member caring for a sick loved one, you need to remain in a positive frame of mind. Avoid as much as you can silently grinding over the inevitable end. I know this sounds silly (and perhaps difficult or impossible to do) but this is extremely important for your own personal well being. Focus on the good memories. Whenever the illness comes up, I try to focus on the present changes in her symptoms. Identify the cause and try to come up with a solution that alleviates his discomfort as much as possible.
Whenever I am there (pretty everyday...) I often bring up non-illness related topics (some goofy minor thing with my kids, the house, work, a recent old neighbor that visited my mom etc). Pretty much anything that takes my mom away from her illness (even if it is only for a few minute discussion). These discussions often lead to reminiscing about my dad. I cherish those moments. Keep it simple and never bring up any serious long term challenges (affecting you). You don't want your husband to fall into a deep depressed over something he perceives he will not be around to help you through.
It is a journey...
Good luck and write whenever you wish,
Paul
