I am newly diagnosed (2/7/2022). I just turned 69 on the 21st of February and I want to weigh treatment options and decide for myself what I am and am not willing to do. I have severe arthritis so have been using a rollator (walker with seat and wheels) for some time now. I can't breathe well enough to see my chiropractor for my back and shoulder issues.
I am on the spectrum, with many sensory issues. I've already outlived my bestie, my beloved, many friends. If I am approaching my end, that's fine with me. My biggest concern right now is hoping this doesn't interfere with cataract surgery (April 2022), so I can see well enough to read, write, and crochet. I'm just not excited about chemo, radiation, clinical trials, trying this or that, do everything to extend the number of my days at the expense of the quality of my days. I want to find out if surgery is an option but for insurance, I have to meet with the radiology and chemo folks first.
Because I've had streptococcal pneumonia and a partially collapsed lung for two months, I've already become dependent on others for many little things, and it is bothering me a great deal. Why are we supposed to fight this tooth and nail? Shouldn't it be our choice? I don't even want to tell family or friends yet. My daughter, my primary supporter, is the only one who knows so far.
Thus far, though, staff have not taken my conditions into account -- I have back and knee pain constantly and was slowly uncurling so the Pulmonary tech could get my height, and she grabbed my head like grabbing a cantaloupe and pulled me into position, stretching me up so I measured almost 4'11" when I am 4'10" tall. When positioning for scans, they abruptly yank my legs up for the wedge I'd requested, causing both knee pain spikes and back spasms. Moving slowly causes far less pain. I realize they treat scads of patients, but sheesh -- is this a way to treat a little old lady, especially one who has just painstakingly gotten out of a wheelchair by the scanner or the wall? Between my cataracts and my poor vision, I do not want to give up my glasses until the last moment -- I get disoriented and cannot tell where I am going or what I am doing. I was not fully sedated for my flexible bronchoscopy, and I told the doctor that, but he laughed and said stop talking and told me I wouldn't remember anything. So, weeks later, I am still having flashbacks; I can recall the steps of the procedure, every one of the six specimens he gave to the nurse, and so on. Thank God the pain meds worked. So, yeah, I am a more than a tad skeptical about rosy descriptions of what I might expect with newer treatments and so on, and whether my choices will be honored, or if I can get biomarker testing and such. And this is a world-class university cancer center 🙄 The scanner bed was high -- but they said, "Hop up." Do you think I look like I can hop anywhere? I asked for a step or a stool. Nope. I don't think they are picking on me; I just fail to comprehend why they treat any patients this disrespectfully. One nurse was outstanding, and I intend to write her a Thank You note.
I do like this site and expect to be exploring it more as time goes on, but I don't know how often I will do so. The resources look very good.
I am new to the wheelchair. I have used a rollator -- walker with wheels and a seat -- for about 2 years, since my cane was no longer sufficient. However, with the extreme shortness of breath after minimal exertion, it simply is not practical, not manageable, for these medical appointments, so we've utilized the wheelchairs at the various medical clinics. The rollator simply isn't enough support, except in my own place, and it's awkward in my tiny apartment. I suppose pretty soon, we will need to find out how I can get my own basic wheelchair.
My daughter has gone with me for everything except my PET scan, when she wouldn't have been allowed in anyway. She is a great advocate for me and takes notes for us. Normally, I take notes, but this is so unsettling, it's easier to let her handle these. She has tried to describe and emphasize the multiple issues. After a couple of positioning issues (one made the pain so severe, it kept me up nearly three nights before subsiding), I was really anxious about my last low-dose scan, and my daughter was reluctant to let the tech take me from the waiting room solo, just to help me get into the scanner, but the tech said she understood and would be gentle. Indeed, she was.
With my Pulmonary Function Test, the tech got us from the waiting room, and paused in a niche for height and weight, and yanked me so abruptly, neither my daughter nor I had time to intervene. I thought my daughter would take a swing at the woman. I was trying my darnedest to cooperate with the testing, but having trouble decoding what the tech wanted, as she rattled off 4-5 steps rapidly, and I have sensory issues. My daughter tried to explain; the tech had ice water in her veins and apparently never had an autistic/Aspergers patient before. She simply rattled off the same steps rapidly. I wanted to scream, cry, or go back to the PFT lady who did my last test several years ago, because she had walked me through step by step, and put the nose clip on my nose. I can't find my nose except by trial and error or with a mirror. My daughter put the nose clip on me because this tech just handed it to me. I panicked during one step and my daughter jumped up to help me but the tech body-blocked her. The tech wanted me to mimic her mouth -- I cannot mimic facial expressions. And so on. I was in such a state, I couldn't get back in the car right away. My daughter wheeled me to the hospital gift shop, got me a lovely journal to write about our journey, and a keychain with an angel in an oval frame. I was gulping Diet Coke and trying to regain my senses. My daughter is a HUGE blessing and will be with me every step of the way, as much as she is permitted. I kept apologizing, but my daughter knows I cannot control my atypical sensory processing. Heck, I hemorrhaged giving birth, and apologized over and over, even though my veins were collapsing, I had no blood pressure, and it was wild. I was in a Home-Like Birth Center and felt bad about bleeding on the carpeting. 🙄 Sorry, side-tracked. I'm constantly apologizing, even to the chair that has broken my little toe half a dozen times. (The chair leg is bubble-wrapped now.)
Thank you for the link. I printed the article, to take with us, so we cover all the bases with our questions. Thank you all for your encouragement!
I'm a single mom and my twin boys were 10 when I was diagnosed, so I did it alone. It's great you have your daughter with you and she certainly does seem to be a protective advocate! Please know we are not only here for you, but your daughter as well. Will be thinking of you and looking for updates! <3 Alisa