No doubt in this heart that while it was worth it for Scott to enjoy the crashing waves on the beach, the expense of Scott’s exertion in the day caused problems for him last night. Any kind of heat whether direct sun, body heat, hot tubs, fever etc can spike the fentynol patch dosage so that is is releasing too much into his system. Side effects such as extreme dizziness and even hallucinations……we experienced that and lots of other fun stuff. This is not a vacation. No matter how much we wish it were. No matter how positive a spin we put on the blog.
Meeting new people, forging new friendships with transient hotel guests has given him a lot of joy and kept him in the game of life. The flip side is he has had to say goodbye to even more friends, as they leave the hotel and new potential friends move in. This is bittersweet but also definitely worth it.
Scott thinks about the timeline hanging over his head every day. In fact he asked me to write this post. He has resolved any lingering conflicts with people, said goodbye to all whom he cares about, and tells me he has nothing left do do now but live the remainder of his days spending time with me. When he first discovered his prognosis two months and one week ago he did not have any idea of how much pain he would have to endure, how difficult simple tasks like walking would be, how frustrating it would be to obtain small creature comforts in Goa such as cushioned toilet seats, down pillows, wedge support bed cushions, a chair that sits well, prescriptions filled, the list goes on. Shopping for these things feels like being on a scavenger hunt that can go on for days. We are not being obnoxious Americans. He is terminally ill in a foriegn country. No hotel– no matter how upscale– converts easily to hospice care. Everyone here is doing the best they can to accomodate each new challenge as it comes up.
Even a hug from a well meaning friend poses hazard for him now. With ribs and backbone poking out and the pressure of the ascites compressing his organs and squeezing his lungs, friendly hugs or pats on the back or slaps to the arm or bumping into him accidentally cause him bruising pain that can last for days.
The only goal in Scott’s mind was getting to Goa. Now we have been here awhile. We arrived in India November 2nd and in north Goa on Dec 1st. We did not expect the tropical heat and humidity to be like this in the winter season. Nor did we realize the rustic condition of the roads in Goa…it is remote and conveniences need to be planned in advance and ordered from away. Much like our beloved Deer Isle, Maine. I asked if the decision would have been different had he known the difficulties we’d encounter? Scott considered the question and all its import. He answered no. He is where he wants to be. It is what it is.