r/cancer • u/babymirage • 13h ago
Patient Didn’t want to wake up from General - how do you keep going?
First course of chemo & radio treatment appears to have failed, moving me from an 80+% survival rate category to < 20% (radio & chemo resistant oropharyngeal cancer). I made a living by talking, so being mute isn’t an option. I tried my first speaking heavy event early this month and it was a disaster.
As I was being put under this week for another biopsy, I found myself praying that I wouldn’t wake up. I was pretty disappointed when I did.
My ex wives have taken almost all of my savings. I’m in my 50s. I have no insurance. I’m unable to work consistently because of issues with my throat, pain & pain med side effects. My last remnants of retirement savings are rapidly being drained.
I really don’t want to spend the next 5 years living like this. I probably only have savings for 2 years anyway.
It may be selfish of me but “living for my kids” or “living for my girlfriend” isn’t motivating. It just feels like another burden.
How do you keep going?
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u/waninggib 9h ago
I’m 36F. Never been married and I don’t have kids. I choose to keep going for myself. I haven’t gotten to do the things that I want to do yet, and if I gave up now, I’d definitely not get to do them. Tbh, I do feel a little envious of people with children or partners, because that’s a type of support I’ll never get. If I had that, I’d want to keep going even more.
I think you would really benefit from speaking to a therapist throughout this journey, as it can really help.
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u/babymirage 9h ago
I’m in my 50s. I’ve pretty much accomplished all of my major professional goals I ever set for myself. I have some minor ones that haven’t panned out but they are by definition minor.
If I had not been systematically pillaged in marriage & divorce, I would have the option of a comfortable retirement right now. (My ex actually stole significant amounts of from me in addition to getting more in the divorce)
Financially, I have to assume that whatever I have now is what I’ve got.
If they come back with a terminal diagnosis I can draw down end of life social security, which I could live decently on in a 3rd world country (unfortunately that means poorer medical care as well). It’s a trade off. But if the decline is fast then it won’t matter as much.
If I passed quickly, however, there’s a life insurance policy that would give my kids some security. Their college is already paid for.
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u/waninggib 8h ago
Your kids want you alive, not your life insurance money.
I’m sorry you were diagnosed with cancer. Most of us here are in the same boat. It’s up to you how you decide to navigate this journey. As I stated before, therapy sounds like it would be really beneficial for you. It sounds like you have a lot of things you’re struggling with mentally, not just cancer.
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u/Edith_Keelers_Shoes 6h ago edited 6h ago
It's a good question, and you are brave to ask it. I have a more supportive situation than you, but I DO have an ex that is not only draining money from me - but I'm still paying to clean up messes he made years ago. On your end, that may end up working out in your favor. I only have disability and retirement income, which places me just a few hairs over the line under which I'd be eligible to receive all different kinds of state support (I live in NY State).
On bad days, I do make it about my kids - one step and one bio - both are autistic and both are trans. They are troubled, and they are terrified. They are in the crosshairs from every direction because the country has lost its mind over gender issues. So when I'm feeling low, I remind myself that they've repeatedly told me they need me. But the reality is, I still have more good days than bad. I still enjoy life. I'm a person who gets happy easily. I'm content spending hours doing nothing but reading. I spend a lot of time on Reddit, just being in other's company, hearing about their lives, their obstacles, and their triumphs. I don't really need a lot from the world, but I do feel I still have something to give to it. I do feel that it is possible I can leave this world slightly (very slightly) better for my presence. And I'm fortunate that my kids (both young adults) have made it eminently clear they are willing to help out in just about any way to keep me here.
But your feelings are your feelings. No one can tell you they are wrong. What I can tell you is that cancer brings out extremes in us. I've had times of depletion when I find that between what's going on inside my body and what's going on in the world, no one is in control of anything and it feels utterly intolerable. Agony. But what I've also found is that just as one cannot stay in a state of pure happiness indefinitely, one can also not stay in a place of misery indefinitely. Things do change, whether we like it or not.
So while I understand and support your feelings, what I hope for you is that you find some small measure of happiness, and find it something you want to and are able to grow. You are important, and you have a right to be here.
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u/vesselofwords 11h ago
I came here looking for the same thing as you I guess. I (40F) am 8 days post surgery (partial glossectomy and lymphadenectomy) and so overwhelmed. I have never struggled with speech in my life and here I am wondering if I’ll ever be able to teach again or recognize the sounds coming out of my mouth as my own words. My face doesn’t look like me when I talk in the mirror. I’m told my nerves will repair and my speech will improve but I don’t know how much or how long it will take. I wish I had better feedback for you, but I’m new to this myself. I just wanted to say I feel your struggle and I pray we both find hope and healing.
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u/babymirage 9h ago
Thanks. I’m not sure I could go through with having part of my tongue removed… which would put me onto the palliative track. Although today interestingly I’m experiencing a new kind of numbness which hinders speech.
I can write but that’s not how I get paid. People pay me to talk (lecture, persuade, etc).
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u/vesselofwords 3h ago
I get it. I was told it was my best option and time was of the essence so I got it over with, but I realize now how much I took the simple ability to eat and speak for granted.
They will set me up with a speech therapist but yeah it adds an extra layer of horror when your job depends on it. I will say it’s getting better every day though so there’s hope.
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u/babymirage 2h ago
I had a RIG in during primary treatment. It was depressing - I found it so much so, that I really don’t want to go back there.
Surgery may be one of my better options, they tell me, but has the associated quality of life issues you are noting. Immuno and experimental chemo is my alternative. Not excited about quality of life there either.
I don’t see much of my kids, they are grown pretty much. My friends will miss me but the only person who really is a daily presence who will miss me is my gf. She will be sad, but she’s young-ish (41), and will get over me.
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u/Roticap 2h ago
Glossectomy seems so tough. I had a partial maxillectomy along with some trigeminal nerve damage a bit over two years ago. I've had three failed surgeries to repair the defect, but have been left with a hole in the roof of my mouth and a limited 10mm jaw opening, which gives me difficulty with eating and speaking.
I empathize with the agony of losing speech functions. Your comment about not recognizing yourself in the mirror really hits home. I had no comprehension of how much my voice was tied to my self concept. I don't think I could have understood before it was gone. It took me a lot of grief to work through disconnect between my past self, who could had a nearly instantly path from having a thought to communicating it to any English speaking human, and my current self, who has to repeat things and try to use simple words to communicate. I try to hold onto the thought that it's better to be NED, but some days it's hard, really really hard.
I have met two other patients during my journey who had parts of their tongues removed. They were both many years further out and had compensated amazingly. I wouldn't have known about their surgeries if they hadn't told me. I've also experienced significant healing with my nerves. I truly hope your journey leads you to a place of recovered function.
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u/greywar777 5h ago
Getting on social security was a game changer for me. Its rapid with stage 4 cancer.
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u/SnooSuggestions6502 8h ago
I have Stage IV Breast Cancer and back after my dx - when I was being put out to have my ovaries taken out - there was a moment when all the anesthesia and meds hit and I wanted to just not wake up - everything felt alright.
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u/RelationshipQuiet609 7h ago
Sometimes you have to turn your attitude around. You have some savings. You are still here. Third world country, yeah the US is becoming one. What about all of the poorer people that will lose their health insurance in a few months? How will they pay for their cancer. I have had it myself five times and it’s destroyed me financially. But I keep plugging away. Go back to court and get a new alimony agreement. I have been divorced too and my ex didn’t pay a dime. They are a lot of us out here who really won’t have anything to get us to even 2 years. It’s life and it can suck but’s what you make it, cancer and all.
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u/babymirage 5h ago
The alimony is gone - it’s all lump sum. I just don’t have much left. I can see end of the line coming financially.
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u/Muckraker222 NSCLC mucinous adenocarcinoma stage 4 2h ago
My motivation has always been helping others. Every single person that has cancer contributes to the wealth of knowledge about cancer, which will push us forward. It may be incrimental, but it is always meaningiful.
In my case I am in phase 3 drug trial, which I told my oncologist that I might die soon, but if that means I can help children and others with the research that my trial results can provide then I am contributing as a human.
Obviously, this doesn't help for us as inviduals and to that I say we all need to hang on as long as we can to allow the science to catch-up.
I've promised myself that if I reach NED I will run for office on syndicalist platform and one of my main platofmrs will be universal healthcare and UBI as people need to be protected.
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u/babymirage 2h ago
I am doing public service with (most of) the amount of work that I am able to do. So from that perspective I haven’t given up. It just doesn’t pay very well and has an expiration date as my speech deteriorates.
The lucrative work hasn’t been popping for me lately. But I’m not totally useless yet.
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u/Jackveggie 9h ago
The squamous cell carcinoma in my mouth didn’t hit me until I was 70 so I was fortunate. Had I still been an attorney I might’ve gotten way more depressed than I did. But I had quit the rat race when I was in my 40s and started growing veggies and stuff and eventually making an income at it. When I was past 1/2 of my treatments it was curiosity about my grow area, plants, chores that kept me interested in this realm, and some beautiful grand babies as well. If I hadn’t been diverted towards that type of thing I might have checked out. I hope you have peace in your life however it goes.