I think that subconsciously I've been in mourning for all the parts of my life cancer took. First and foremost, and the most life-changing, the ability to chew and swallow. For the rest of my life my meals will be formula poured down my feeding tube. No flavor, no enjoyment, no variety. More like taking medicine than eating. Can you think how much of life this just erases? Meeting a friend for coffee or a meal. Having people over for dinner. Eating popcorn at the movies. Devouring the leftover Halloween candy. No coffee in the morning, no wine in the evening. No more use for my kitchen or any of my cooking gadgets, my dishes, my silverware. All the cookbooks and recipes I've collected over the years are now useless. One of the things I was looking forward to doing in retirement was cooking things that took more time, the delicious things my mom used to cook.
I had hoped to be a librarian an even 30 years before retiring. Well, I made it to 29. The ability to speak clearly is the other major thing the cancer took. My once-expressive voice and perfect diction are gone forever. I'm difficult to understand in person, nearly impossible over the phone. No more story-telling, which I loved doing. No more easy conversations with friends. Problems in shops, when the sales person can't figure out what I'm asking. I had an Amazon Echo, commonly called Alexa, that I gave away because it couldn't understand me. Many business phones, the pharmacy for example, use a voice robot. They can't understand me either. Calling a help line for assistance with my computer, or taxes, a credit card, or anything else is useless. I can't drop a bon mot without having to explain it or rephrase it to the point where it's no longer funny.
Less crippling but an extreme nuisance: mucus. Since I can't swallow, a lot of saliva collects in my mouth. Because my tongue no longer reaches to my front teeth, I can't tell it's there until I open my mouth and release the drool. So if I forget to spit onto a tissue before I open my mouth to speak, there's the big gob of spit coming out. Humiliating. Nasal mucus that drips down my throat gets stuck. I can't spit it out or swallow it. I have a suction device to clean it out. It tastes bad and smells bad, and it's really disgusting to look at. I have to clean the device's canister every few days, and the smell is really gagsome.
The scars in my neck from the surgery to get the lymph nodes out are horrendous, as is the scar from the tracheotomy. They may heal up some but they're always going to be very visible. So now I wear a scarf when I go out in public, or a turtleneck. Once I couldn't stand turtlenecks, or anything else tight around my neck, and now it's pretty much necessary. The scar on my arm from the transplant and the scar on my leg where they took skin to patch my arm are ugly, but easier to hide. My friends say the scars aren't noticeable, but I've been standing in checkout lines and heard the people behind me speculating on what caused them.
I've been taking a variety of pain killers for the neck scars, which the radiation hardened until I can barely move my neck. They're extremely painful. It seems to be a trade-off: no pain, but brain fog - or some pain, but a sharper brain. I still don't feel as though I've got all my brains back, and my stamina gets weaker every single day. I don't know if it's just the drugs. I haven't been pushing myself, and the path of least resistance is sitting in front of the TV binge-watching crap. The fact that I don't sleep well is probably also contributing.
Last night, I slept for 2 hours, woke up, took some other pain meds, and slept for another 2 hours after watching a little TV and knitting to relax myself. The second time I woke was at 7:30 this morning. I thought about just staying up or going back to sleep. Since I only had slept 4 hours I opted for the latter, but when I woke up again at 10 I felt groggy. This time I got pissed off. All I wanted to do was just sit, but I made myself get dressed, have breakfast (at noon) and do some things around the house - not much, but a start. Evidently my choice is to give in and just become an invalid, or fight myself and do stuff even though I feel like death warmed over. This is reminding me of the time I had to physically fight off a bully. I looked up at her and thought, "Well, I'm going down, but I'm going to give her something to remember me by." I punched her in the nose as hard as I could, broke her nose, and she ran home calling to her mommy. I was 12 at this time. She never bothered me again.
So this feeling of 'why bother' and lethargy are the bullies now. Time to start punching. If I just sit and let time flow over me, what good am I? I need to do the things that make my life worth living, the things I can still enjoy and do. I haven't worked on my novel for months. I need to knit more. I need to take care of this house, my cats, and myself. I will do these things even if they're hard and I would rather just curl up in a ball and become an invalid.
I think it was Winston Churchill who said, "When you're going through hell, keep going." This is very true advice. If you don't keep going, you stay in hell. There may be nothing beyond but more hell, but you'll never know if you don't go on.
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