u/createusernameagain

I guess the first thing is to thank everyone who supported me from diagnosis through treatment...you all answered questions I didn't know I had and got some good laughter in along the way 😊

About 2 months ago, I noticed dark lines in my fingernail. I knew what it was. A secondary form of SCC that has no cure and overall, just felt it in lymph nodes on the left side of my head and neck (all the ones on the right side were removed) and knew I'd gotten in my 1 year reprieve though that is about as far as I'm gonna get.

This morning is one that reminds me of the words "About 4-6 months" as an answer to "Well, where are we at". Body hurts, bones hurt, brain spins up about death as in "I'm going to miss so many people I love so dearly", that and "I'm going to be so bored when I die, I'm used to being busy all the time!".

It's a weird place to be in. How long before Hospice? Can I will myself to make it short as older family I took care of at their homes until they passed were able to do the same (about 3 weeks tops). It's a goal and I've always had them so I'm not stopping now. Still a lot of paperwork to get done with my Son so everything transfers TOD and he won't have a ton of stuff to mess with. Vehicle titles and goofy stuff like passwords to access my computer...which is quite different from when my Grandparents and Parents passed.

Anyway...just take care of yourselves and others who land here. You all are such amazing human beings and you need to give yourself credit for that. I do, you have made this life long journey so much easier for me, more than you will ever know.

Thank You ❤️

I finally got around to organizing all mail, paperwork and general stuff I just crammed into a bin after diagnosis from Feb 2025. It hit me sideways looking at my pet scan and initial report along with all the paperwork from the cancer center, doctors visits etc. in that "Did we really get as much done as we could have? Did I miss anything?" sort of way. Slept pretty sound after filing it, still feel ambivalent this morning, still have things to get done today. It's like having one foot in and one foot out.

Cancer sucks like that. Your going along with life, then you get a diagnosis, then your going along with life again only to feel like walking down the street and you catch your toe on a curb which is startling.

This is my life now. This is how I will live the rest of my days. I'm staying in touch more with my core group of family and friends, I'm moving forward, I still have days where I need more rest, still look at the sky at night and everything around me during the day with wonder and awe.

It's just a weird place to be.

Sorry to all I got to know here, I had to dip out for awhile to deal with my headspace and getting into the forum wasn't helping. Now Reddit is giving me crap bc I was 2 days short of 300 daily logins and the mods have to review everything before it shows up 🤬

Anyway...RT finished late July, 3rd degree burns finally healed by September last year. Just kept healing from all the things and headed into the New Year feeling pretty good with good test results too.

Then February hit and all sorts of fun stuff started gradually:

I'm now allergic to peanuts and peanut butter. My family was shocked when I told them I can't eat anything with peanuts in it, been eating that stuff my entire life (I'm 65 so that's a long time). My doc advised me against eating shellfish just in case and when you live in the PNW (Seattle) shellfish is a way of life, not a diet thing. A get together BBQ always includes some sort of sea creatures though I sure hope fish isn't going to be off the list or I'll just be sitting there, tears dropping on my chips making them all soggy and not worth it.

March went weird when one morning when I woke up and my vision was blurry. It went away after about half an hour and kept doing it for a week then wouldn't stop. I checked my eyes in the mirror and what in the SamHell is going on with my pupils?! One was normal sized, the RT side was much smaller! Got a virtual appt with my Doc later the same day and nope, not a stroke or Ischemic attack, go see your Ophthalmologist. Full tests done, very very slight cataract on the RT side though permanent Anisocoria. I'd wear contacts to give that David Bowie kind of flair but the stupid things are expensive. We did have to change the lenses of my glasses on the right side only and they gave me a break since I've been going there for over 20 yrs. Managed to get them all changed (3 pair) for under $100 including our over the top 10% sales tax.

Mid April the pollen started gangbusters...and so did my sinuses. It's been non stop and now the non RT side wants to try to start an infection with the lovely dark black/blue line under my eyes to show off how badly it's been hitting me. I have make up. I look demented bc I haven't worn make up in over a year since diagnosis Jan 2025.

We've had less rain and more sun all "winter" and it isn't going to get many cloudy day soon and I'm terrified of being outdoors. I spent most of my off time from work outdoors, now what? I already had the large brim hats from last year of getting RT in the middle of summer but needed more. First a search on verified UVF clothing then hit Amazon. At least it's still "spring" and Mothers Day sales saved me from paying $48 for ONE shirt, they were $19 with the hoods and sewn in pull up masks so only your eyes are visible until you add sunglasses which are prescription for me so, I could rob a bank? (I would never rob a bank but I might scare the hell outta them walking in the door).

Other than that, the only part that really annoys me is my neck where surgery had to rearrange some muscles and my right arm just ain't going to work right anymore from the one lymph node wrapped around the shoulder muscle so both had to be removed. I keep stretching, massaging and working out as best I can but it's never going to be as strong and lifting above shoulder height doesn't work. (Note to self: if I do rob a bank and police tell me to raise my arms, I'm screwed).

Sometimes I have less energy but most of that is fighting the sinus thingie, I'm still able to take care of myself and all the things like eating, smelling, tasting have all come back though I find certain types of spices taste better. No idea what's up with that but it's fun to eat something I've eaten most my life and go "Wow! That tastes really good! What kind of spice is that?".

Overall, RT sucks. Cancer sucks. And life could suck if I let it but I'm stupidly optimistic and over competitive so there is that.

Hope this finds many I had great conversations with are doing "Okay" and if you are new here, I'm so sorry you are here. Just try to keep your sense of humor intact, it's what has kept me going ever since my diagnosis ❤️‍🩹