Hi there, it's been so very long. Funny how in the midst of personal crisis you do your best to keep everyone informed and then when life reverts to whatever the new normal is with less exciting (good or bad) happenings you lose track of time, days, weeks, months pass and before you know it here we are.
We are well. James continues treatment. We could pause, the Oncologist had given us that option. But James doesn't have significant side effects and I question if we were to stop would something recur. I had the same feelings with my own treatment, when chemo and radiation are over, after the 10 years of Tamoxifen, what then. Will it come back? You're always a bit on edge. So we forge ahead with the maintenance treatment, bonus being we see the oncologist every two weeks and they tweak our world to keep James going.
We will always live with the physical repercussions of advanced laryngeal cancer. Managing the stoma, cleaning the crustiness of dry winter air, moisture, masking/bandana being my push but he prefers au naturale naked stoma (an issue during a pandemic). Feeding tube for liquid nutrition with the fistuala above the stoma healing then reappearing when James craves ice cream and tests swallowing again. Swallowing pushes whatever it is up through sinuses out nose reopens fistula then we manage that leaking and hopefully healing for weeks on end, I try to encourage James to taste then spit but, alas, not as fun. Crushing pills for the every 4 hours doses, worrying when James manages his own meds that he's doubled up on something or takes pills more frequently than he should so I'm always nervous and try to catch the pill hour myself. Remembering to change med patches, forgotten many times. Creams for skin issues, scalp, finger and toe nails which go wonky from treatment, forgetting to look at the toes then managing the red soreness while kicking myself for neglect. Managing the feeding tube site on his stomach, which is always leaking, with a goal is to keep the site dry and clean with dressings, forgetting to check the dressing then managing the repercussions of that. Alternating between antibiotic and prescription steroid creams, everywhere. The care giving / care assisting is a full time job, my own self care falls by the wayside. I lean heavily on CBD.
My current world of glass seems to take every minute that I'm not assisting James. I'll make beads until the wee hours of the morning then sleep in until it's time to start the next day. We are lucky that Sander (our son) lives at home and isn't working to give me/us support. I'm able to duck out once and a while, although James usually prefers to come with. I worry about Sander not moving forward with his own life. I worry about a lot these days. Phoebe (our daughter) has moved out with her sweet boyfriend. Sander's girlfriend would like him to move out with her too but is pushing for him to have a real job first. The kids both assist with the glass cane business (an off shoot of my glass bead making) but it's not quite self supporting as a business. Hopefully soon, time will tell. It will or it won't and until then I'll enjoy spending the time with the kids figuring it all out.
All that being said I am thankful too that in the midst of this crazy ongoing pandemic we are surviving. We were mentally prepared for it, we should run social isolation seminars. Pre-covid we hadn't been doing much socially. Gathering for meals isn't much fun for James, not surprisingly, and I have a lot of food guilt eating/enjoying food in front of him. Much easier to graze in the kitchen when he's tucked into the living room. Large crowds, complex conversation with multiple people can be hard for James, tricky to keep up when writing responses. So we had been staying home and still do, perfect for the pandemic. Our entertainment involves a variety of streaming channels. The living room TV is always on. When I don't want to hear whatever it is he's watching I'll use my headphones. Communication is still a combination of reading lips and written word when I struggle. We may look into an electrolarynx (device held against throat to speak), the voice prosthesis is unusable with current fistula issues. We'll see, it's not high on our to-do-list.
We're still sleeping dysfunctionally, he's comfortable on the recliner and I'm on the couch. He'll wake me up to assist with inserting/removing the feeding tube when he's up for pills so good for me to be close. The overnight food is managed by pump pushing in at a slow drip a high protein liquid. The dual food, day vs night, seem to be maintaining weight ok. He's at my prime weight and I'm, sadly, at his prime weight (back in the high school college days...) Wish we could hook up at night to transfer body fat along with the liquid food.
Boredom is an issue for James. He'll wander the house while I'm working. He'll hover. I'll suggest things but not much interests. He does putter through all the household which is lovely, laundry dishes and the like. It's a beautiful thing. I'd love to find him a new passion though. Carpentry isn't quite as easy although he'll still construct small things. Switching the old wallpaper for paint is ongoing in the house (we'll forever live in-progress), he's very good at fixing small mechanical things. If you have a need you're welcome to drop it by to see if he could bring it back to life. I wish we were near a river, near the river, for him to fish on/off all day. That is the one time I truly see him happy. Unfortunately it's only a few weeks in the summertime. I'd love to find something locally for Spring and Fall or maybe realize my dream of having a small mobile studio/camper so that I can make beads on the road and he can fish. If anyone has a small gutted trailer that has an intact shell give a shout :^) that would be a fun project for James to play!
Anyhooooo.... here we are, still kicking. Contemplating what's next while we exist in the present. I hope that your world is calm and happy and healthy. Keep on keeping on, mask up, we will too. I'll try to write more often. Until then xxxoo Beth and James
