hospital wifi isn't free

a place to document / vent about my experience with rhabdomyosarcoma.

[annnmoody]

I’ve seen a couple of posts on here about trauma and pain not making you a better person, but I want to say that thinking that helps some people get through trauma and abuse and pain, it’s a coping mechanism. It helps to think that it will be over soon, and when it’s over you’ll be stronger for it. I’ve been through a lot of shit but I’ve been relatively successful in my life. I may not be a better person bc of my trauma but I AM the person I am today because of my trauma. And maybe sometimes, to get through all the terrible parts, I told myself I’d be better after it all.

[rhabdoprincess]

hair growth update! this is bedhead, but i’ve already had to get a haircut because i was starting to get a mullet!! the top is growing slower than the sides, though, so i think i’m going to buy a pair of clippers and even things out! i’m also artist shopping to find someone i like to do a head tattoo for me. i’m thinking of getting a daylily (because they’re hard to kill) or a white rose (in memory of patients i was acquainted w who were taken too early by rhabdo) with “HARD TO KILL” over top. whichever bloom i decide on, the stem would go up my spine, with the flower itself on the bottom half of the back of my head! which means i’d be shaving at least half of this off. I don’t mind, though, being bald for six months tends to make you lose your connection to your hair!

also: i got glasses! my eye doc (also a cancer survivor) told me that she believes my loss of distance vision is probably related to prolonged severe eye dryness, a result of getting radiation to the lower half of my eyes, as well as the chemotherapy drugs themselves (vincristine, specifically). 

[rhabdoprincess]

hey y’all! haven’t posted here in a  lil bit. i finished treatment in january and since then have been recovering from the longer lasting side effects of chemo, as well as rebuilding my life! i have a retail job now, i’m going back to school in august, and i have a cute lil pixie cut! i’m going to leave this blog up for documentation purposes, but i’m otherwise moving on from cancer. if y’all are interested in following my main blog just lmk! 

[rhabdoprincess]

all my "memento mori"s in one shot: the stick n poke i got about 6 months before i was diagnosed, my port, and the tattoo placed on my sternum for centering during my radiation treatments. hopefully they will stay nothing more than mementos of my past from this moment forward 😊

[rhabdoprincess]

i had my last chemo infusion yesterday!

now, after i get over the nausea, i can start acclimating to the normal world again! i'm going to type up a piece about life before and after cancer some time soon!

[rhabdoprincess]

me: i've actually been feeling alright lately!

the Illness™: [guitar screech] GUESS WHO JUST GOT BACK TODAY

[nocturnalvisionary]

PSA to anyone going to any doctor.

This is REALLY important. This is for any doctor appointment. Whether it be cuz you are sick, or disabled, or ANYTHING. Unless it’s a MRI, Xray, Catscan, etc where NO ONE can be in the room with you (cuz of machines and radiation etc), you do not have to listen when someone says you can’t bring someone back with you.

You are the patient. This is YOUR body. Don’t let them tell you it’s ‘a small room’ don’t let them tell you that it’s not common. This is YOUR body. If you are more comfortable with someone in that room with you- INSIST. Insist multiple times if you have to, be REALLY upset, show that you are upset.

As someone who has been in PLENTY of different doctors offices and procedure rooms, the only real reason to not allow someone else in that room is if it’s because of sanitation/safety reasons (ie - surgeries, MRIs, X-rays, Catscans). Don’t let anyone tell you otherwise.

[theamazingdalet]

Like, this is a legal thing, although I can’t speak for everywhere, obviously.

Even the office that employs my shitty, shitty GP has a SIGN on the front desk that says you have the RIGHT to bring someone into all of your appts with you. Not just professional advocates or caretakers, not just if you’re a certain kind of disabled, not just if you need an interpreter, etc.

Anyone can bring anyone just because you want them to be there, that’s your right.

IMPORTANT: you also have the right to dismiss people. If someone’s in the appt with you and you ask them to leave, and they don’t want to, even if your doctor doesn’t want them to, it’s your body, your appointment, and you have the right to insist that they leave the room.

No one but you has the RIGHT to be in your appts if you don’t want them there.

[rhabdoprincess]

[sloweaver]

gonna start tracking my hair growth through tumblr hashtags… also check of the turtleneck i feel very Coffeehouse Open Mic Poet rn

[rhabdoprincess]

having cancer is a pain in the ass... i’m about to just give up on college because trying to plan my re-entry is so exhausting i just don’t want to deal with it at all. chemo put my life on hold but only long enough to fuck everything up.. not long enough to let me adjust

[bodylovebodywellness]

Body acceptance is often more complex than just “loving your body.” It’s become really easy for healthy people (especially “body positive” feminists) to say “Love your body!” and leave it at that, but as anyone with a chronic illness will tell you, it can be downright difficult to love a body that makes you sick or actively causes you pain. Loving your body is a great goal, and while it’s great to see more women striving for it, such rhetoric often leaves people—and women—with disabilities, chronic illnesses and pain out because our bodies are already portrayed as not “normal” or beautiful enough to be worth loving, or even accepting! Loving your body on days when it confines you to bed seems counter-intuitive, and for some folks with chronic pain, it’s just not going to happen. By contrast, body acceptance can be a process of meeting your body where it is, and striving to be okay with a chronically ill body—even on bad days.

Anna Hamilton, “Six Things I’ve Learned From Dealing with Chronic Pain”  (via healmycrocodileskin)

[brutereason]

“How can I support you?” is a question that works in almost every situation imaginable. It preempts judgement and assumptions while oozing humility. Often the person won’t have an immediate answer—likely because they aren’t used to being asked a question that’s about what they actually need as a unique human being. If they look stunned, I suggest something like: “It’s OK if you don’t have an answer or don’t need anything right now; the offer’s open for whenever. Just let me know.” And then use an emoji of some sort or make a face that conveys warmth so they know you mean it. (This could be a unicorn, the two señoritas dancing, or the smiling poo. Up to you.)  *Here’s the fine print: you have to believe their answer, whatever it is. If they tell you they don’t need anything, you don’t get to push or pressure or demand they give you something to do so you feel less helpless. Remember, this isn’t about you.

Dear Bystander, The Unsolicited Advice Has Got To Stop - The Establishment  (via oaluz)

[rhabdoprincess]

i miss being able to enjoy food ☹️

[sloweaver]

i’ve been trying to hide how gaunt i am in photos… i know my angles (ex: photo 1 vs photo 2). im gonna stop tho bc im sick and i think part of accepting illness relies on my acceptance of my body in all forms. i hit 100 pounds yesterday, the lowest my weight has dipped since i began treatment. thankfully, it should go back up, because i can finally chew and swallow food again! my mouth and throat sores seen to have healed (for now at least) and i’ve been able to keep nausea at bay by increasing my marinol dosage. i have a lot to be bitter about, but i also have a lot to be thankful for. i’m finding a balance.

[cubebreaker]

Cancer survivor designs the empathy cards she wished she received @Cubebreaker.com

[thereisnoimpossible]

[chronic-confessions]

Confession #347

I feel horribly guilty for having good days. And for choosing to go out and do something fun instead of catching up on the mountains of housework I have from being sick all the time. I feel like I should stay inside all the time and never do anything. Its not fair.