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Kale

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Don't know if this belongs in the depression boards or not (if not, please move to relevant area mods, thx), as I'm not quite depressed, or perhaps it's become such a state of normalcy as to be indiscernible.

Either way.

I'm approaching my 38th birthday on the 22nd. I'm very chronically ill, and I'm coming to the point in my life where I'm weighing future prospects which are grim. I'll elaborate on specifics when pertinent, but basically this disease requires me to undergo "mid"-tier chemotherapy (in terms of toxicity and side effects) three weeks out of of the month to fight a tumor in my chest that is growing uncontrollably. For the rest of my life this will continue. It's been an on and off battle since I was 20. If I don't undergo this treatment which makes me largely miserable Mon-Wed, this growth will eventually encroach into my left lung and ultimately my heart cavity and impede their functions, but not before the immense suffering such a slow death would entail as it is very slow growing and is also located right on my Brachial plexus to my left arm which causes constant chronic pain and oftentimes uncontrollable painful muscle spasms. Death would not come quickly. Realistically looking forward, I don't think I'd make it past my mid 40s if I stopped chemo tomorrow, and those years would be more than unpleasant. If I continue chemo, who's to say how much time it would afford me. It could stop working, or a variety of problems could arise. For all I know, it could be ineffective now and just not had enough time to show up in scans.

I'm just done with chemo. I'm done with it. I hate it, I've endured enough, and for the payoff it's bringing in my life I don't see it as worth going through anymore. This chemo doesn't give me health; it spares me death. I am still sick and in pain. I also battle Bipolar II. I don't actively wish to be dead, but I don't think I'd be so heartbroken if it arrived in haste. I've not discussed these thoughts with my parents, with whom I still live with but I know what they think. During one of my most difficult periods about two years ago, my mother came out to me in tears and said (when she saw me in the grips of the worst my diagnosis had to offer), "While your father and I would never wish it, we would understand if you decided to commit suicide. All we ask is that you don't disappear and say goodbye first." Jaw on the floor at being said such a thing by a parent, but as close to verbatim as I care to recall. I know this is not a situation that hasn't been entertained in all our minds, though past that we've never broached the subject further after I abruptly ended the conversation.

*sigh*

......I really don't know what I'm looking for here. There's always the "I can't say anything" and "best wishes" replies, I appreciate the sentiments, but I'm looking for something deeper and am hopeful for more meaningful discourse. I guess I'm curious as to what others would do in my situation.
  • continue chemo, which is awful and holds no guarantees
  • stop chemo, and pursue a futile path to a relatively short term future

I realize this is sparse and vague in detail, it has to be otherwise this'd be a thesis, but I'm happy to answer any questions. I have so much to discuss in terms of feeling immense guilt, shame, cowardice, and so many other emotions I can't rightly describe. I don't want this to get too long, but I'm finding myself at a significant crossroads in my life of great reflection and consideration about whether I wish to continue living against an illness I will not be able to defeat, and after largely being a lurker here for a few years, would appreciate some people to bounce my thoughts off to help gain some perspective on this.
 
Hi Kale. I am sorry that you have to deal with this. And, I don't know what I would do if I was in your shoes. That really isnt' for me to say. I think that you should feel at peace with whatever you decide to do and that is OK to your life on your terms, whatever you decide. I think you should have a very frank talk with your doctors regarding the chemo success rate and the most likely progression and course of your illness. And, if you have already done this, then you might want to seek out a support group of others who have battled the same illness for their perspective, who would be in a much better position to give you insight on this. No matter what, life is a gamble for everyone and nobody knows what the future holds. So, the best advice I can give is to live your best life TODAY and just proceed in the direction your heart is telling you to go.
 
Like delledonne I don't know what I would do in your shoes either. I also think that a frank and open talk with your doctors might help. Maybe there is a different chemo drug they could try or another anti-sickness drug or something to alleviate the treatment's side effects?
A support group would also be a good idea. If you feel too unwell and exhausted to join one in 'reality' then an online group might be a possibility.
Keep us posted on how things go for you. I am really sad for you having to go through all of this suffering.
 
If you really want to know what some of us think:
From the info you've provided, I think I would continue the chemo and try to spend the days I could with family and friends and just doing whatever it is that made me and others happy.
I'd honestly, mostly, be trying to look for ways to give those I love and care about good memories to remember me, but also good memories I could look back on when I know it was all ending. I'd want to make the world a better place in every way I could, so that I could leave it a little better than it was when I arrived. I'd try to continue that until I couldn't possibly do it anymore.

But I can't know how horrible chemo is. I've never gone through it and only heard the stories from those who have.
If you feel it is time it must stop then I can't say I wouldn't feel the same way in your position.
 
Sorry to hear all of this.

Before deciding on what to do. Ask yourself if you would rather live a longer life full of pain or a less painful one that won't last as long. I am not going to encourage you to continue chemo or stop but if you do decide to stop you will be missed but I don't think anyone will fault you if you do decide to stop. No one wants to live a long life full of pain but if you have a reason to keep going I suggest continuing chemo.
 
delledonne11 said:
Hi Kale. I am sorry that you have to deal with this. And, I don't know what I would do if I was in your shoes. That really isnt' for me to say. I think that you should feel at peace with whatever you decide to do and that is OK to your life on your terms, whatever you decide. I think you should have a very frank talk with your doctors regarding the chemo success rate and the most likely progression and course of your illness. And, if you have already done this, then you might want to seek out a support group of others who have battled the same illness for their perspective, who would be in a much better position to give you insight on this. No matter what, life is a gamble for everyone and nobody knows what the future holds. So, the best advice I can give is to live your best life TODAY and just proceed in the direction your heart is telling you to go.
I've talked to my doctors. That's not so much the issue.....it's not that chemo is a success or isn't, in my case it's working. I'm simply at the end of my rope with it. It's their job to advocate treatment so there's not much I can ask them that I don't already know. As for support groups, where I live is very geographically isolated (Maui) and in addition my condition is extremely rare so finding a support group for the specific illness is tough on the mainland, much less on the islands.


Despicable Me said:
If you really want to know what some of us think:
From the info you've provided, I think I would continue the chemo and try to spend the days I could with family and friends and just doing whatever it is that made me and others happy.
I'd honestly, mostly, be trying to look for ways to give those I love and care about good memories to remember me, but also good memories I could look back on when I know it was all ending. I'd want to make the world a better place in every way I could, so that I could leave it a little better than it was when I arrived. I'd try to continue that until I couldn't possibly do it anymore.

But I can't know how horrible chemo is. I've never gone through it and only heard the stories from those who have.
If you feel it is time it must stop then I can't say I wouldn't feel the same way in your position.

When I'm on chemo I'm not happy, and nothing I do makes me happy. At best doing things I like distracts from a reality I'd rather not be cognizant of, but doesn't give me pleasure. Chemo makes me sick, tired, and irritable. When I'm not on chemo, the wonderful alternative is chronic pain, which is exhausting and makes me just as grumpy. Memories to live for? I'd think my death would leave them with better times in mind.

The only people I care about are my parents, and they are the only reason I've continued this long. I hate my three siblings and speak to them as little as possible as they've been nothing but judgmental. I have one friend 2k miles away. I can't finish or maintain interest in anything I start as Bipolar rips my life down and then builds it back up again, only to tear it to shreds again, with the tumor is then on top of it. I fight to overcome this, yet I'm still viewed as a loser and social reject by all my peers who have families, careers, marriages. Why should I bother fighting when I'm not even given credit for what I'm doing, but am instead looked at with contempt!? How can people be so heartless?? F*** them all to Hell. I would slit their throats if I could get away with it, the extent of my anger goes.

Shio said:
Sorry to hear all of this.

Before deciding on what to do. Ask yourself if you would rather live a longer life full of pain or a less painful one that won't last as long. I am not going to encourage you to continue chemo or stop but if you do decide to stop you will be missed but I don't think anyone will fault you if you do decide to stop. No one wants to live a long life full of pain but if you have a reason to keep going I suggest continuing chemo.
I want to live a shorter life in agony to spite those who've judged me. I am filled to the brim with hatred. I want recognition and credit for something people don't even think twice about because they have it for free. In my suffering and death, I want to exemplify and highlight their ignorance. To give them a clue. Many will fault me if I decide to stop I've no doubt, just as they gave not an inkling of credit when I found the courage to fight all these years. The endurance and tolerance of my pain will be fueled by my hatred for others who have found it suitable to judge me, and I will make my departure a part of their lives, whether they want to see it or not.
 
Before I say anything else, I want to say that I feel you, Kale. You have no idea how many things you said in your post were things I've asked myself too. Just to give a brief background, I am battling cancer too. I totally get you with the chemo, I'm doing daily chemo right now, and each cycle is a month long. My current treatment plan is to have me do 4 cycles, with a month break in between. So I do it daily, excluding weekends to let me rest. It IS very draining. I fight it though, many days even though I get so exhausted and fried from the chemo, I hate how I'd fall asleep or crash afterwards so I just try to keep myself up and about as much as I can. So I hear you, I hate chemo just as much as you do. It really messes you and it takes a lot to keep yourself sane from it.

That said, I'm really sorry you have been going through this. Nobody deserves to go through this.

Kale said:
I'm approaching my 38th birthday on the 22nd. I'm very chronically ill, and I'm coming to the point in my life where I'm weighing future prospects which are grim. I'll elaborate on specifics when pertinent, but basically this disease requires me to undergo "mid"-tier chemotherapy (in terms of toxicity and side effects) three weeks out of of the month to fight a tumor in my chest that is growing uncontrollably. For the rest of my life this will continue. It's been an on and off battle since I was 20. If I don't undergo this treatment which makes me largely miserable Mon-Wed, this growth will eventually encroach into my left lung and ultimately my heart cavity and impede their functions, but not before the immense suffering such a slow death would entail as it is very slow growing and is also located right on my Brachial plexus to my left arm which causes constant chronic pain and oftentimes uncontrollable painful muscle spasms.

Do you bear with the pains or do you take painkillers? I can't imagine having to put up with such intense pain all the time. I was going through a painful time when I was in the hospital when I was newly diagnosed and there were days you wonder how much your body can take with it. Doctors pumped with painkillers and they don't always work very well or long enough. In the earlier days the doctors noticed how I was in pain but they told me they can't give me too many.

Kale said:
Death would not come quickly. Realistically looking forward, I don't think I'd make it past my mid 40s if I stopped chemo tomorrow, and those years would be more than unpleasant. If I continue chemo, who's to say how much time it would afford me. It could stop working, or a variety of problems could arise. For all I know, it could be ineffective now and just not had enough time to show up in scans.

Gosh, you don't know how I've had this type of conversation with myself and my best friend. To go with chemo or not to go. The possible outcomes, the odds. Who's to say really, right?

Kale said:
I'm just done with chemo. I'm done with it. I hate it, I've endured enough, and for the payoff it's bringing in my life I don't see it as worth going through anymore. This chemo doesn't give me health; it spares me death. I am still sick and in pain.

There were so many times I say this to myself. I'm so done with chemo. Those were the harder days. You're right on that, it doesn't give us health, it spares death and slows the journey towards it. But then the question that would come up, would you rather spend more days alive with the people you care and love around you, be it sickly and all... or would you rather have a shorter amount of time with just as much pain?

Kale said:
I also battle Bipolar II. I don't actively wish to be dead, but I don't think I'd be so heartbroken if it arrived in haste. I've not discussed these thoughts with my parents, with whom I still live with but I know what they think. During one of my most difficult periods about two years ago, my mother came out to me in tears and said (when she saw me in the grips of the worst my diagnosis had to offer), "While your father and I would never wish it, we would understand if you decided to commit suicide. All we ask is that you don't disappear and say goodbye first." Jaw on the floor at being said such a thing by a parent, but as close to verbatim as I care to recall. I know this is not a situation that hasn't been entertained in all our minds, though past that we've never broached the subject further after I abruptly ended the conversation.

The first couple of times I talked to my family about my thoughts on stopping chemo, they weren't agreeable. They wanted me to live longer but then they didn't really understand the effects of it on me. So I gave up talking to them about it. The last time I talked to my mother about stopping chemo altogether out of my financial worries of having a huge debt tailing me cos I haven't been able to work for 6 months now and I can't pay up my housing and stuff, she seemed rather agreeable. I don't know why the change of mind, maybe she doesn't want to lose our home or maybe she sees how much it bothers me. I really don't know.

In your case, I think your parents are trying to be understanding about how painful it is for you but the way they delivered it perhaps was a little insensitive? Some people would see it that way, some people would see it as them being understanding. I do realise that a lot of times when we're dealing with a terminal illness, every thing someone says could get to us. It makes me doubt my judgement of how or what people mean with the things they say. Most people don't know what it's like to be on this side of the fence, so they don't know how to word their thoughts... well. I don't blame them. It's tricky.

I'm sorry though they made it sound it like that. I don't think they meant it negatively. :\

Kale said:
  • continue chemo, which is awful and holds no guarantees
  • stop chemo, and pursue a futile path to a relatively short term future

This list remains at the back of my head all the time ever since last February when I started chemo. My best friend tells me that the better option is always to keep going where it'll give you a longer life than an expectedly short one otherwise.

I even recently spoke to my main doctor about how it's made me feel. He was highly against me stopping chemo because he said that it only guarantees a sooner death sentence than a possible lengthy and fulfilling future ahead. He told me not to give up, but the thing is, wanting to stop chemo isn't about giving up with my health or life. It's about wanting to feel the humanly normal feels again and not feel the effects of it. The nausea, the headaches, the fatigue.. and we live with this day by day. It's makes you see it from a different perspective from other healthy people, even those who try to understand.

Your first point, where you said it holds no guarantees. Well, I'll say that nothing in life is guaranteed. But it gives you the possibility of experiences in life you may never get to have if you decide to stop chemo and find yourself struggling for life sooner rather than you might expect. You'll just have to keep patience and take each day at a time, one step at a time. Days when it gets really bad, I suggest sleeping it off, or finding things to do, that you are capable of doing in that state. Don't try to do things that you know you'd have a hard time doing cos it only makes you feel like honeysuckle when you can't. I've put myself in these situations more than enough times that I hate myself for it. Always trying to do more than what I can in the meantime.. it's not helping.

Kale said:
I realize this is sparse and vague in detail, it has to be otherwise this'd be a thesis, but I'm happy to answer any questions. I have so much to discuss in terms of feeling immense guilt, shame, cowardice, and so many other emotions I can't rightly describe. I don't want this to get too long, but I'm finding myself at a significant crossroads in my life of great reflection and consideration about whether I wish to continue living against an illness I will not be able to defeat, and after largely being a lurker here for a few years, would appreciate some people to bounce my thoughts off to help gain some perspective on this.

I understand. I often have this thought in my head, when will I meet another type of cancer or a much worse one than the one I have now? I know... I have a gut feeling that this isn't the last one I'll see or have to deal with in my life.

Kale said:
I've talked to my doctors. That's not so much the issue.....it's not that chemo is a success or isn't, in my case it's working. I'm simply at the end of my rope with it. It's their job to advocate treatment so there's not much I can ask them that I don't already know. As for support groups, where I live is very geographically isolated (Maui) and in addition my condition is extremely rare so finding a support group for the specific illness is tough on the mainland, much less on the islands.

I don't go to support groups either. One of the reasons was because I don't want people to tell me that I will be okay and that this will be behind me. How can they know? If I would know this better than anyone and I can't say for a fact that I will be okay. I'm sure there are support groups that don't always chime these positive statements. But that's what you'd mostly hear. I also don't really feel like being around people in person ever since I got diagnosed. I've lost some friends along the way. I think partly it has been my fault.

But hey, you can have a support group here.... I could be in it. I mean, it might seem pathetic but it might also help if you knew someone else who goes through a similar life. Just let me know, feel free to PM me anytime.

Kale said:
Memories to live for? I'd think my death would leave them with better times in mind.

I hear you on this. But I also wanna say that my dad had multiple cancers when he lived. I was at the pink of health and I grew up visualising his funeral because of how hard he battled for his life. I always cried when I did this because it hurts to lose someone you have had in your life the entire time. But I always wished for more days because it's not about facing how bad it is, but it's the presence and wanting to spend time with them despite the complications and the pain, it's something to cherish, not just with memories, but with the feeling that's there which you won't get when they're gone.

So it's not really just about having good or bad memories.. it's having you around, your presence.

Kale said:
Why should I bother fighting when I'm not even given credit for what I'm doing, but am instead looked at with contempt!? How can people be so heartless?? F*** them all to Hell. I would slit their throats if I could get away with it, the extent of my anger goes.

I stopped expecting to get credit for anything even in my current situation. I stopped expecting people to understand or care that I am going through honeysuckle. Sometimes it surfaces again, but it's better when you lose the expectations. People will always be people and they are mostly selfish and ignorant. There are still good people around though, I never give up on that no matter how much faith I've lost in people over time.

Kale said:
I want to live a shorter life in agony to spite those who've judged me. I am filled to the brim with hatred. I want recognition and credit for something people don't even think twice about because they have it for free. In my suffering and death, I want to exemplify and highlight their ignorance. To give them a clue. Many will fault me if I decide to stop I've no doubt, just as they gave not an inkling of credit when I found the courage to fight all these years. The endurance and tolerance of my pain will be fueled by my hatred for others who have found it suitable to judge me, and I will make my departure a part of their lives, whether they want to see it or not.

Why would you wanna do anything for other people, Kale? You live your life for yourself... and you make the decisions based on how you want to live. How you want your future to be, not for your parents, not for your friends or those people who judge you or are not kind to you. It's not worth it. Doing things out of hatred or anger will only leave you feeling a lot worse than before in the end. I was at this stage not too long ago. I had so much hatred in me, I was on break from this forum, I started shutting people out, I was negative and I was breaking apart.

I realised one thing though, that it was exhausting. Being mad or frustrated at people for being the way they are... what's the point in that but only to cause me grief and anger? It was so exhausting and nothing good came out of it. Why torture yourself like that? When you can choose not have that hatred and forget about them, because this is your life and you know it best. They can judge you all the want, but see it as them making a fool out of themselves and being ignorant and that they can never understand unless they go through it themselves. I just think it's not worth living with that hatred for people brewing inside of you. It only takes away your focus on things that you could find peace with or enjoy.

I'm not sure if any of the things I say here makes sense but I want to say that what you think and the things you describe here... they are true and and I hear you. My perspective is, despite wanting to drop chemo many times, and perhaps will still do in the future, you should keep going with it and try to change certain things in your life to make sure that you can get the best out of it, in the given circumstances. Work around it and try to smile, despite the pain. Try to be kind to yourself in that way, cos nobody else will.

*hugs* Stay strong. I'm here if you wanna talk about it in greater detail. You don't have to go through this alone.
 
Your dilemma is way outside my frame of reference Kale, so my opinion is basically irrelevant.

But you're essentially terminal, right?

I think I'd request my doctor to provide me with pain relieving narcotics then wait until living becomes worse than not-living.

I'm sorry Kale, that your luck is so unfair.
 
ladyforsaken said:
Do you bear with the pains or do you take painkillers? I can't imagine having to put up with such intense pain all the time. I was going through a painful time when I was in the hospital when I was newly diagnosed and there were days you wonder how much your body can take with it. Doctors pumped with painkillers and they don't always work very well or long enough. In the earlier days the doctors noticed how I was in pain but they told me they can't give me too many.

I take painkillers which take the edge off but the pain is always there. I wouldn't claim as intense all the time, but if it's not a discomfort it's a constant ache, akin to a glowing ember burning in my back. I was initially on 180mg daily of Oxycontin which I chose to detox off years ago as it made me a walking zombie, now I'm on a relatively lighter dose of Vicodin (with a few Oxys Rx'd for really bad periods when Vicodin can't touch) or I can go down to the doc and they give me shots of Dilaudid, which I won't lie.....I love. One of the perks of the job, I suppose.

Why do the docs deny you? I get angry if they do so for me, but in truth not many are reticent to throw prescriptions my way after taking a look at glance at my history. What are you on, and does it help?

ladyforsaken said:
The first couple of times I talked to my family about my thoughts on stopping chemo, they weren't agreeable. They wanted me to live longer but then they didn't really understand the effects of it on me. So I gave up talking to them about it. The last time I talked to my mother about stopping chemo altogether out of my financial worries of having a huge debt tailing me cos I haven't been able to work for 6 months now and I can't pay up my housing and stuff, she seemed rather agreeable. I don't know why the change of mind, maybe she doesn't want to lose our home or maybe she sees how much it bothers me. I really don't know.

In your case, I think your parents are trying to be understanding about how painful it is for you but the way they delivered it perhaps was a little insensitive? Some people would see it that way, some people would see it as them being understanding. I do realize that a lot of times when we're dealing with a terminal illness, every thing someone says could get to us. It makes me doubt my judgement of how or what people mean with the things they say. Most people don't know what it's like to be on this side of the fence, so they don't know how to word their thoughts... well. I don't blame them. It's tricky.

I'm sorry though they made it sound it like that. I don't think they meant it negatively. :\
Nor do I. I believe it came from a place of love but it was nevertheless difficult to have a parent essentially give blessing to the suicide of their own child. I''ve come to the conclusion they love me to the point they'd rather see me dead and out of suffering than alive and in it. If I were a parent I could imagine feeling similar.

ladyforsaken said:
This list remains at the back of my head all the time ever since last February when I started chemo. My best friend tells me that the better option is always to keep going where it'll give you a longer life than an expectedly short one otherwise.

I even recently spoke to my main doctor about how it's made me feel. He was highly against me stopping chemo because he said that it only guarantees a sooner death sentence than a possible lengthy and fulfilling future ahead. He told me not to give up, but the thing is, wanting to stop chemo isn't about giving up with my health or life. It's about wanting to feel the humanly normal feels again and not feel the effects of it. The nausea, the headaches, the fatigue.. and we live with this day by day. It's makes you see it from a different perspective from other healthy people, even those who try to understand.

Your first point, where you said it holds no guarantees. Well, I'll say that nothing in life is guaranteed. But it gives you the possibility of experiences in life you may never get to have if you decide to stop chemo and find yourself struggling for life sooner rather than you might expect. You'll just have to keep patience and take each day at a time, one step at a time. Days when it gets really bad, I suggest sleeping it off, or finding things to do, that you are capable of doing in that state. Don't try to do things that you know you'd have a hard time doing cos it only makes you feel like honeysuckle when you can't. I've put myself in these situations more than enough times that I hate myself for it. Always trying to do more than what I can in the meantime.. it's not helping.

Death is always to be fought against for these people, it always seems to be very simple math to them. I have been doing chemo, on and off, since 20. If I were to compound all the cycles I've had back to back, it would amount to years. I have done my part, and why? I suppose I did so in the hope that things would get better. They're not, on the contrary they are getting worse. Chemo is not something that's intended to be chronic. It is a total war of attrition, and my body is breaking down. I now have to give myself injections (Nuepogen) after each cycle for three days, to help stimulate leukocyte growth, only to be hit again. If I don't, a common cold becomes a serious threat that could warrant hospitalization. Going out into the world is now becoming a risk due to my immune system being hammered for so many years, and there's no end in sight.

It's also not just the physical effects. This chronic chemo has socially ostracized me. I'm almost 38 and the only remnants of a life I can build foundation upon can be traced back to before diagnosis: a bit of retail and menial jobs from early teens to 20, with a few temporary jobs and failed college courses during breaks in my mid twenties and early thirties that amounted to nil. All my friends extend from that period, and they've deteriorated as they're all progressing in their lives and we have nothing in common. Mortgages, careers? Nothing I know of. I am hugely stunted in growth in what is expected of someone my age as I've had to pay heed to illness at nearly all times in sacrifice of everything else. I have no career, work experience, skills, my social skills are very poor, I've never known love or even had so much as a steady (aside from fooling around, again, in my teens). I'm not entirely inexperienced in all ways with women, but am still a virgin, which with my lifestyle now I've lost all hope I will lose. The concept of dating or even being able to relate to anyone my age is utterly laughable.

It's not so much enduring this chemo, it's dealing with its ramifications in every other area of my life in dealing with it. Yes, it wipes me out. But I can deal. What I can't deal with is being placed in a perpetual state of limbo by having to continue to deal. If I have cancer, I wish it was one that would kill me, or that I could get to a point to fight it into submission so I'd have time to pursue something. This diagnosis demands a schedule that rips me out of life professionally and socially. It's this unwinnable battle that makes me see continuing to live totally fruitless.

ladyforsaken said:
I don't go to support groups either. One of the reasons was because I don't want people to tell me that I will be okay and that this will be behind me. How can they know? If I would know this better than anyone and I can't say for a fact that I will be okay. I'm sure there are support groups that don't always chime these positive statements. But that's what you'd mostly hear. I also don't really feel like being around people in person ever since I got diagnosed. I've lost some friends along the way. I think partly it has been my fault.

But hey, you can have a support group here.... I could be in it. I mean, it might seem pathetic but it might also help if you knew someone else who goes through a similar life. Just let me know, feel free to PM me anytime.

I appreciate that, thanks. I don't like support groups as I'm generally socially anxious, and am exceptionally uncomfortable speaking so intimately on my condition with complete strangers in RL. I've also been humbled by this experience, and something is constantly nagging in the back of my mind to keep my mouth shut in advice towards others' dire conditions. I've met many other survivors along this road, and one thing I've taken away is that you can never predict. Some may be open, some many wish to not talk about it, some anger easily, some tear up. It's not territory I'm comfortable treading, even though people are there voluntarily. I also get easily angered and have little tolerance for ignorance (unintended or otherwise) so I figure it best to keep away as I don't wish to make a scene.

ladyforsaken said:
I hear you on this. But I also wanna say that my dad had multiple cancers when he lived. I was at the pink of health and I grew up visualizing his funeral because of how hard he battled for his life. I always cried when I did this because it hurts to lose someone you have had in your life the entire time. But I always wished for more days because it's not about facing how bad it is, but it's the presence and wanting to spend time with them despite the complications and the pain, it's something to cherish, not just with memories, but with the feeling that's there which you won't get when they're gone.

So it's not really just about having good or bad memories.. it's having you around, your presence.

My condolences about your father. At 75, my dad's health is on the decline and I don't give him more than a year, if that. I'm bracing myself for that day. As I'm pretty much living for my parents, him being gone would be one less reason to remain. 'Course my mother is all the reason I need, but I have to question how much she values my presence. I'm often not pleasant to be around because I'm sick, and if not sick, in pain. I have to ask myself, at what point is the line drawn? Good memories don't stem from bad circumstance, and a suffering presence is painful not only for me, but for her as well. I think partly why she said what she did for me was that it'd not only spare me suffering, it'd spare her some as well. She'd be more at peace than see me in continual agony. I can't blame her.

ladyforsaken said:
I stopped expecting to get credit for anything even in my current situation. I stopped expecting people to understand or care that I am going through honeysuckle. Sometimes it surfaces again, but it's better when you lose the expectations. People will always be people and they are mostly selfish and ignorant. There are still good people around though, I never give up on that no matter how much faith I've lost in people over time.

I don't know. I want credit and validation. Perhaps insecurity? This disease has been a large part of my life and has required tremendous effort on my part to survive, and I think that deserves some acknowledgement. Maybe I don't need credit, but **** it to Hell if I'm going to allow others to sit there in their health and judge me for what I've been through when I'm struggling to breath.

My faith in people is largely absent......maybe that's why I feel like giving up myself. I don't know.

ladyforsaken said:
Why would you wanna do anything for other people, Kale? You live your life for yourself... and you make the decisions based on how you want to live. How you want your future to be, not for your parents, not for your friends or those people who judge you or are not kind to you. It's not worth it. Doing things out of hatred or anger will only leave you feeling a lot worse than before in the end. I was at this stage not too long ago. I had so much hatred in me, I was on break from this forum, I started shutting people out, I was negative and I was breaking apart.

I realised one thing though, that it was exhausting. Being mad or frustrated at people for being the way they are... what's the point in that but only to cause me grief and anger? It was so exhausting and nothing good came out of it. Why torture yourself like that? When you can choose not have that hatred and forget about them, because this is your life and you know it best. They can judge you all the want, but see it as them making a fool out of themselves and being ignorant and that they can never understand unless they go through it themselves. I just think it's not worth living with that hatred for people brewing inside of you. It only takes away your focus on things that you could find peace with or enjoy.

I'm not sure if any of the things I say here makes sense but I want to say that what you think and the things you describe here... they are true and and I hear you. My perspective is, despite wanting to drop chemo many times, and perhaps will still do in the future, you should keep going with it and try to change certain things in your life to make sure that you can get the best out of it, in the given circumstances. Work around it and try to smile, despite the pain. Try to be kind to yourself in that way, cos nobody else will.

*hugs* Stay strong. I'm here if you wanna talk about it in greater detail. You don't have to go through this alone.

I would love to live life for myself, but am very financially restricted. I get $1k SSI disability a month, half of which goes to the parents for room and board. The other half is used for piano lessons and hobbies. If I had the means I'd pursue skydiving (though where I live doesn't have a DZ), something I enjoyed before I got diagnosed. I can't afford to pursue a life that would make me happy.

About hating, I don't choose to....I just hate. I cannot even begin to touch this feeling with logic or rationale. It consumes me. I cannot choose to feel what I do, just like I can't point to a stranger on the street and say to myself, "I love that person". There's no choice there. It is experience that nurtures this, and I'm sad to say as the years pass the anger has only grown. My problem is I simply don't know how to let it go. I'm at a loss in forgiveness.

Thanks for your thoughts and taking the time to reply, it's appreciated.


constant stranger said:
Your dilemma is way outside my frame of reference Kale, so my opinion is basically irrelevant.

But you're essentially terminal, right?

I think I'd request my doctor to provide me with pain relieving narcotics then wait until living becomes worse than not-living.

I'm sorry Kale, that your luck is so unfair.

Your opinion isn't irrelevant, I value all feedback.

That's the thing....my condition isn't terminal if I continue chemo. I'm trying to decide on whether to continue with it or not.
 
Kale said:
'Course my mother is all the reason I need, but I have to question how much she values my presence. I'm often not pleasant to be around because I'm sick, and if not sick, in pain. I have to ask myself, at what point is the line drawn? Good memories don't stem from bad circumstance, and a suffering presence is painful not only for me, but for her as well. I think partly why she said what she did for me was that it'd not only spare me suffering, it'd spare her some as well. She'd be more at peace than see me in continual agony. I can't blame her.
I can't speak for your mother, exactly, but I really doubt that this is true.
I'm sure she loves you and wants what is best for you. I highly doubt she's just looking to make her life easier. What is 'best' for you now, though, is questionable. She sees you suffering and wants you to do what you think is best and make your own choices. She knows she doesn't feel what you feel and knows that only you can decide what is truly best for yourself in these circumstances.
When she said before what she did, she was probably trying to tell you, in her own way, that she approves of your decisions no matter what, but that she wants some good memories before your go. That is why she asked for you to 'not disappear' and to say goodbye.

Even if you're irritable or angry or hard to deal with, she likely understands every moment and still cherishes the time she has with you.

You shouldn't see yourself as a burden on them. The bond between parents and children is one that is difficult to break. Disease isn't something that breaks it, either. In most circumstances it makes the bond stronger.

Don't let yourself think that just because you feel miserable and can't do much that your parents aren't enjoying their time with you. As ladyforsaken explained, it is those moments, any moments, that we appreciate once someone we truly love leaves us. We always wish for more, never for less.

To be perfectly honest, I think what your mother said to you took a massive amount of bravery, and also love. For her to even consider that and actually speak those words she was following the philosophy that 'if you truly love someone, sometimes you have to let them go'. She knows you're suffering and knows that there would likely be a point when you would question things yourself, and she did not want that time to come without a goodbye, at least one last memory to cherish.


Kale said:
About hating, I don't choose to....I just hate. I cannot even begin to touch this feeling with logic or rationale. It consumes me. I cannot choose to feel what I do, just like I can't point to a stranger on the street and say to myself, "I love that person". There's no choice there. It is experience that nurtures this, and I'm sad to say as the years pass the anger has only grown. My problem is I simply don't know how to let it go. I'm at a loss in forgiveness.
What you're feeling, from what I know, is very common. It's okay to be angry.
If I were in your position I'd honestly be pretty angry at the world, too.

I think for now it's more important that you learn to just forgive yourself. It's okay to be angry. It's alright if you react the wrong way to others sometimes. It's alright if you blame the whole world for your situation. You're doing your best, and even if no one appreciates this you are trying. You're not wanting to be angry or hateful.
Those are things you can forgive yourself for, even if you can't forgive anyone else.

Also, I apologize if I said anything wrong. You said you wanted some feedback. I tried to give the best I could.
 
I don't think the human mind is made for handling dilemmas like that, so I'm sorry you are going through this.

I know neither option is whatsoever desirable, but you'll have to focus on what you want. Not what you don't. If this made any sense.
 
Kale said:
I take painkillers which take the edge off but the pain is always there. I wouldn't claim as intense all the time, but if it's not a discomfort it's a constant ache, akin to a glowing ember burning in my back. I was initially on 180mg daily of Oxycontin which I chose to detox off years ago as it made me a walking zombie, now I'm on a relatively lighter dose of Vicodin (with a few Oxys Rx'd for really bad periods when Vicodin can't touch) or I can go down to the doc and they give me shots of Dilaudid, which I won't lie.....I love. One of the perks of the job, I suppose.

Why do the docs deny you? I get angry if they do so for me, but in truth not many are reticent to throw prescriptions my way after taking a look at glance at my history. What are you on, and does it help?

Sounds like you've been on several painkillers already.

I was on Oxycontin when I was in the hospital but very briefly because it caused me reactions. Either it was a clash to the other medications I was taking or I was allergic to it. I'm allergic to a group of painkillers so it's quite tricky to find a suitable one and so far the one that seems to have no reactions for me would be the basic Paracetamol but this lasts me about a couple of hours and still leaves some mild pain while it was working, and there is only so much they allowed me to take in one day.

After a week in the hospital, I gave up on painkillers cos I hated that feeling of extreme pain and mild pain alternating each other. I decided to just deal with it and get my body accustomed to pain, I figured it'll be better in the long run, prepping myself for withstanding any future pain.

Kale said:
Nor do I. I believe it came from a place of love but it was nevertheless difficult to have a parent essentially give blessing to the suicide of their own child. I''ve come to the conclusion they love me to the point they'd rather see me dead and out of suffering than alive and in it. If I were a parent I could imagine feeling similar.

I can fully understand that feeling. When my father was struggling through his last weeks alive, that was the time I wished he would've gone already because it was painful to see him in pain. Nobody could do anything, but see him bear the pain. I wished he was out of his misery sooner, but not because I didn't love him or didn't want him around, but because he was in so much pain.

Kale said:
Death is always to be fought against for these people, it always seems to be very simple math to them. I have been doing chemo, on and off, since 20. If I were to compound all the cycles I've had back to back, it would amount to years. I have done my part, and why? I suppose I did so in the hope that things would get better. They're not, on the contrary they are getting worse. Chemo is not something that's intended to be chronic. It is a total war of attrition, and my body is breaking down. I now have to give myself injections (Nuepogen) after each cycle for three days, to help stimulate leukocyte growth, only to be hit again. If I don't, a common cold becomes a serious threat that could warrant hospitalization. Going out into the world is now becoming a risk due to my immune system being hammered for so many years, and there's no end in sight.

It's also not just the physical effects. This chronic chemo has socially ostracized me. I'm almost 38 and the only remnants of a life I can build foundation upon can be traced back to before diagnosis: a bit of retail and menial jobs from early teens to 20, with a few temporary jobs and failed college courses during breaks in my mid twenties and early thirties that amounted to nil. All my friends extend from that period, and they've deteriorated as they're all progressing in their lives and we have nothing in common. Mortgages, careers? Nothing I know of. I am hugely stunted in growth in what is expected of someone my age as I've had to pay heed to illness at nearly all times in sacrifice of everything else. I have no career, work experience, skills, my social skills are very poor, I've never known love or even had so much as a steady (aside from fooling around, again, in my teens). I'm not entirely inexperienced in all ways with women, but am still a virgin, which with my lifestyle now I've lost all hope I will lose. The concept of dating or even being able to relate to anyone my age is utterly laughable.

It's not so much enduring this chemo, it's dealing with its ramifications in every other area of my life in dealing with it. Yes, it wipes me out. But I can deal. What I can't deal with is being placed in a perpetual state of limbo by having to continue to deal. If I have cancer, I wish it was one that would kill me, or that I could get to a point to fight it into submission so I'd have time to pursue something. This diagnosis demands a schedule that rips me out of life professionally and socially. It's this unwinnable battle that makes me see continuing to live totally fruitless.

I hear you, even though I've only been doing this for 6 months but it surely has made a lot of changes to my life. I'm a loner to begin with, though I had many superficial friends and few close ones but now, I've lost a lot of superficial friends because like you said, they've progressed on and had good things going in their lives and they just lose touch. I used to feel frustrated or upset that those so called friends could leave me behind just like that but I understand. People don't want to deal with people like us. I mean, once I start talking about chemo or medication or other treatment and all that.. they don't really know what to say. Or they try to end it by telling me I'll be okay.

I used to want to do things for a career. I wanted to study further and go into something I really like but because of this, I have a hard time seeing myself ever getting there.

Kale said:
I also get easily angered and have little tolerance for ignorance (unintended or otherwise) so I figure it best to keep away as I don't wish to make a scene.

I haven't met anyone who's facing a similar lifestyle as me right now saying this. Although this isn't exactly a nice thing but it's nice to know that it's not just me. I have been keeping away from people whenever I know I am in that mood.

Kale said:
My condolences about your father. At 75, my dad's health is on the decline and I don't give him more than a year, if that. I'm bracing myself for that day. As I'm pretty much living for my parents, him being gone would be one less reason to remain. 'Course my mother is all the reason I need, but I have to question how much she values my presence. I'm often not pleasant to be around because I'm sick, and if not sick, in pain. I have to ask myself, at what point is the line drawn? Good memories don't stem from bad circumstance, and a suffering presence is painful not only for me, but for her as well. I think partly why she said what she did for me was that it'd not only spare me suffering, it'd spare her some as well. She'd be more at peace than see me in continual agony. I can't blame her.

Thank you for your condolences. Sorry to hear about your dad's health too. I can see how stressful it can get around you and your family. I can't deny any of what you said here because I'd feel the same way. I get it.

Kale said:
I don't know. I want credit and validation. Perhaps insecurity? This disease has been a large part of my life and has required tremendous effort on my part to survive, and I think that deserves some acknowledgement. Maybe I don't need credit, but **** it to Hell if I'm going to allow others to sit there in their health and judge me for what I've been through when I'm struggling to breath.

My faith in people is largely absent......maybe that's why I feel like giving up myself. I don't know.

I know, I go crazy when someone judges me when they don't know a thing of what I go through. I tend to try and look okay in front of people and they think that I'm doing good when I'm exhausted almost all the time, I just don't show it or say it. The discomfort of a mixture of whatever effects I'd get from treatment or medication are always there but I don't like to always mention it so people think I'm dealing just fine and then they say stuff like as if they know better.

I try not to blame them. Cos I understand that they can't understand even if they tried their best to, they still can't unless they've been through it themselves. This is something that nobody could understand just by observing alone. I don't want to hold grudges against people for being that way, I try to let it go. I don't wanna live the rest of my life, however long or short it may be, angry and frustrated. I want peace and I want contentment as much as I can get. I know I won't get it from people, so I don't look out for it from them.

Kale said:
I would love to live life for myself, but am very financially restricted. I get $1k SSI disability a month, half of which goes to the parents for room and board. The other half is used for piano lessons and hobbies. If I had the means I'd pursue skydiving (though where I live doesn't have a DZ), something I enjoyed before I got diagnosed. I can't afford to pursue a life that would make me happy.

Hey, I'm glad you managed to get some hobbies going. I don't even get that much and these debts has been piling on top of me because I can't pay up. I don't get enough financial help. It's very stressful but I don't wanna think about it, if I can help it.

Kale said:
About hating, I don't choose to....I just hate. I cannot even begin to touch this feeling with logic or rationale. It consumes me. I cannot choose to feel what I do, just like I can't point to a stranger on the street and say to myself, "I love that person". There's no choice there. It is experience that nurtures this, and I'm sad to say as the years pass the anger has only grown. My problem is I simply don't know how to let it go. I'm at a loss in forgiveness.

I understand this. Trying to get rid of an emotion is a huge challenge. Often times I find myself dwelling or trapped and it does no good but more harm for me and the people around me. How do I let it go? By changing my perspectives. Like how I used to view people are inconsiderate and selfish towards me because they don't understand what it's like, but I decided to tell myself that it's not their fault that they can't understand. Yes it's not nice of them to choose to be inconsiderate, but that's most people for you and they're never gonna change so I will have to work around them or avoid them for my own sake. I don't need to harbour any anger or hatred towards them. It's not good for me. That's how I managed to let it go. I hope you can find your own way to do it too. For your own sake, Kale. Not for them or anyone else.

Have you made up your mind about your options here?
 

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