Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
It can extend my life but I'm not willing to pay the price. To me, life has to be lived in full - not in and out of hospital. Otherwise it's not worth it.
Thank you for your input.
i struggle with this sentiment. I have a permanently disabled child & I find myself in solidarity with disability rights activists who are fighting 'right to die' legislation tooth & nail, including some commonly used jargon & 'in & out of hospitals' is one such phrase.
Others are 'dependent on others' & 'vegetable' & 'hooked to machines'. It devalues them as people. When you say 'in & out of hospitals' you may be forgetting that some will spend their whole life that way yet they desperately want that chance. It IS worth it to them. THEY are worth it.
You have a chance of only spending a few months like that ... see what I am getting at?
Find me more than one or two posts on this thread that are NOT telling him to get treatment and try to live despite him saying that was not his wish. You don't think that's judgment? You have an interesting way of seeing things.
CD won't allow me to upvote you again so soon, otherwise I would.
But I don’t think anyone’s being judgmental really. If someone comes onto a Cancer Discussion Board and starts a conversation about his plan to forego treatment for a cancer that has a 70% cure rate, that person has to know that people will respond.
It’s a discussion board. If you don’t want to hear the answer, don’t ask the question. Or, more to the point, if you don’t want to discuss it, don’t bring it up on a discussion board, especially one dedicated to cancer and cancer treatment.
i struggle with this sentiment. I have a permanently disabled child & I find myself in solidarity with disability rights activists who are fighting 'right to die' legislation tooth & nail, including some commonly used jargon & 'in & out of hospitals' is one such phrase.
Others are 'dependent on others' & 'vegetable' & 'hooked to machines'. It devalues them as people. When you say 'in & out of hospitals' you may be forgetting that some will spend their whole life that way yet they desperately want that chance. It IS worth it to them. THEY are worth it.
You have a chance of only spending a few months like that ... see what I am getting at?
Personal choice is also worth it. While I do not agree with the OP, I also have a family member who was sick, in and out of hospitals for a few years getting blood transfusion after blood transfusion because he had chronically low platelets, and really wanted the right to die. He was in his mid-80s at the time, had a wonderful and fulfilling life, and just wanted to stop being in pain. There was not anything that was going to cure him. His treatment was only to keep him going a little longer until he needed the next transfusion.
I think it’s absolutely ridiculous for a twentysomething to give up on a finite treatment that could potential cure him of a cancer, but at the same time I support the right of a person to choose, even if I do not agree with that choice.
OP - treatment sucks. It does. I was 23 when I was diagnosed, my side effects were frankly much worse than yours, and I had to work full time because I was only a few months out of college and neither had much in savings nor qualified for FMLA. I was also stage IV with significant metastases - more than my experienced onc had ever seen in a patient who wasn't there for an autopsy - because I was misdiagnosed for 5 years due in part to my age. The average lifespan of someone without treatment for my cancer is about 1.7 years, and I was almost 3X above that when I got into treatment.
Like you, I was dealing with something incompatibly hard at a young age when most people in the cancer center were old enough to be my grandparents. Like you, I had a typically very curable cancer that had a less confident future due to the stage when I was diagnosed. Like you, I had really bad side effects. I was in bed for days and living with a horrible roommate who wouldn't help. There were days I literally crawled on my hands and knees to the bathroom and didn't eat because I couldn't. I lived on the 3rd floor with no elevator and couldn't carry more than 10 pounds for months during treatment. For the first few rounds, tumors were dying off in my legs and spine that rendered me basically incontinent due to the pain. I got shingles halfway through treatment and couldn't wear clothes for a week straight (the only time I took off of work). One of my chemotherapies gave me severe jaw pain for the first few months so that it was hard to eat and felt like I had an ice pick being driven through the hinge of my jaw constantly. The steroids, lack of movement, and lack of consistent access to healthy foods caused me to gain 80 pounds in 6 months. I cracked my teeth due to clenching my jaw in my sleep from the stress and anxiety. I had multiple bone marrow biopsies - and you can't numb bone.
I'm telling you all of this not for pity or sympathy, but so you know that I get it. I've been where you are. I'm not speaking about this imagining what it might be like. I know what it's like. And from the sound of it, you're getting off a bit easy in comparison.
But the alternative? My tumors would have continued to grow slowly and crush my lungs and heart. It would have been a very painful, very slow death. There wouldn't have been anything even resembling a full life in that.
You still have roughly a 3 in 4 chance of survival. Does chemo suck? Absolutely. But it's a temporary inconvenience for solid chance to live another 30, 40, 50+ years.
Quote:
Originally Posted by coschristi
i struggle with this sentiment. I have a permanently disabled child & I find myself in solidarity with disability rights activists who are fighting 'right to die' legislation tooth & nail, including some commonly used jargon & 'in & out of hospitals' is one such phrase.
Others are 'dependent on others' & 'vegetable' & 'hooked to machines'. It devalues them as people. When you say 'in & out of hospitals' you may be forgetting that some will spend their whole life that way yet they desperately want that chance. It IS worth it to them. THEY are worth it.
You have a chance of only spending a few months like that ... see what I am getting at?
You do not get to take those words away from someone living it. You don't get to tell someone who is dealing with disability or illness how they should feel about their own situation. Sorry. Nope.
Caregivers are important and have a vital, impossibly challenging job, but their sentiments cannot and should never try to shut down the words of someone who is experiencing it firsthand. That is devaluing a voice that is different than yours, and taking away our right to fight for dignity. Note: my dignity (wishing for the option for right to die) might not be your dignity or your child's dignity. That's OK. Doesn't make yours more right than mine.
In the illness & disability communities that *I* am a part of, we are fighting FOR "right to die" legislation tooth and nail.
Personal choice is also worth it. While I do not agree with the OP, I also have a family member who was sick, in and out of hospitals for a few years getting blood transfusion after blood transfusion because he had chronically low platelets, and really wanted the right to die. He was in his mid-80s at the time, had a wonderful and fulfilling life, and just wanted to stop being in pain. There was not anything that was going to cure him. His treatment was only to keep him going a little longer until he needed the next transfusion.
I think it’s absolutely ridiculous for a twentysomething to give up on a finite treatment that could potential cure him of a cancer, but at the same time I support the right of a person to choose, even if I do not agree with that choice.
It does sound exhausting for him, poor guy! Those patient's wishes should be treated with dignity & respect; I just wish it was on the down-low because it's created a slippery-slope off 'worth it'.
I had to have nine blood-transfusions over the course of a year & a half but I was 48 at the time. I actually had to INSIST on a few of them (my blood counts would bounce from critically low to borderline critical but I live at 7,000 ft elevation & would sometimes have to crawl on my hands & knees). The attitude was kind of 'sucks to be you' & I had four kids at home, one disabled & I wanted the quality ALONG WITH the quantity of life.
Well, since it has been decided that this trolling, it's not really worth it to follow up on the details.
Still, since some people showed genuine interest and support, I can tell that I've had the appointment with the second oncologist.
I brought all my medical records and explained my experience so far. I told him I do not intend on doing chemotherapy. He just said that chemo is a very personal experience and that there be very different reactions even for the same type of cancer. Some will hardly feel side effects and others have them amplified several times, which seems to be my case.
Regardless of this, he referred me to their counselor and said I would at least have to agree to go to a few sessions (or as many as are needed). I accepted and my first appointment happened today.
In the meanwhile, he would study my file in detail and we'll have another appointment tomorrow so he can present his view and treatment options. Of course his treatment plan will be chemo, even though the regimen might change.
Unleasher, would you mind sharing what you were prescribed to handle nausea during your chemo, and how you were instructed to take it?
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
