Deciding when to die
Many people use "fighting", "battle" and "warrior" in relation to cancer patients. I dislike these terms because we didn't choose to go into battle, and fighting is exhausting. It also makes it sound like when we succumb to our disease, that we lost the fight. Like we didn't try hard enough.
Or worse, when some choose to stop treatment, that they're giving up. And that's the crossroads I'm at now. I've got appointments with my palliative nurses, surgeon, oncologist, GP etc to talk about my decision and what their opinions might be.
I'm lucky that my family understand and fully support whatever I choose. The same with my fellow cancer patients/caregivers - the support I have is overwhelming, really. It makes me feel like I'm not giving up, I'm merely just tired and it's OK to want to sleep.... forever.
I worry I'll be in pain but I'm already in pain now. Great discomfort and pain and inability to get a good night's rest. I'm sore, exhausted and feel this will be one of my last blog posts. So here's a few details on what's happened.
I had trouble eating again recently - food was getting stuck and regurgitating. So I went into the ED, despite my fears and anxieties. I got admitted, had a gastroscope and they put in stent number 3. But after I went home and was OK for 1 day, my eating became worse than before they put the third stent in. So much so I could not get any water down. It was like the start of all this bullshit back in June.
Wait, that wasn't the start. The start was March last year. It's been nearly a year of pain in my chest. You can't imagine how tiring it is to have pain constantly plague you like this unless you have a similar pain. I wouldn't wish it on anyone.
Anyway, back to ED I went, just before New Years Eve, thankfully - so it wasn't crazy busy. But still busy nonetheless. I got admitted, had a single room finally after sharing the last two, and had yet another scope done. Stent number 4 inserted. The problem? Disease is growing into the stents and blocking everything, making food get stuck, making my esophagus bloat up and just generally shit news.
So yeah. Chemo didn't do much and if I am on this immunotherapy it's not doing much either. Sure, I could try other chemos... but... why? I've seen other people do this and they just waste away. Tired. Tired. So tired. I'm already tired. Can I take chemo? No, I really can't. Not again.
But it's not an easy decision, basically deciding to "stop fighting". I don't take it lightly. All I know is how I want to live - and right now I merely exist. If I were to chase down chemo and other "cures", I know I would want to kill myself everyday from the pain and side effects.
Not to mention, I am incurable. Even if one of the chemos worked miraculously, and got rid of everything and I became resectable, I know that I would suffer without a stomach, and that cancer recurrence is high. And I don't want that.
I don't want years of "fighting cancer". I want weeks, months of enjoying my family.
It's fucking hard and I do worry I'm being rash... but if you were in my shoes, you tell me how to live the day to day. I take showers just to pass time so that I'm standing upright - or I sit upright as long as I can or try to walk around the house. But I'm... so... fucking... tired.... I nearly faint in the shower or I need to sit. I could barely climb the stairs today.
This isn't a life and it will be even less than one if I continue with treatment. I know, because I've already been there.
So yeah.... I guess you could say I've decided to die. To "stop fighting". To "give up". I don't know what better term to use for something like this because it's so taboo. People will say you're young, don't give up! You never know! There could be a cure around the corner!
But these people don't live my life for me. They don't carry the pain for me. They don't understand.
I'm just done. But I hope that my suffering was not in vain. I hope that my shock diagnosis and openness with talking about my disease has helped others in taking better care of their health. Maybe even discovering their own issues early enough to be cured.
I hope that one life, has helped saved many more. Then choosing to die isn't so bad, it's balanced and fair and makes sense and all is right in the world again.
So here's the facebook group we created for young people with stomach/esophageal cancer and their caregivers. We are supportive, knowledgeable and not very PC. We tell it like it is and it's a group I'm so proud of. I love all these people and they love me. We are like a family of dysfunctional diseased delinquents. :)
Join it if it you are looking for support. You won't regret it.
https://www.facebook.com/groups/750867938578349/
Or worse, when some choose to stop treatment, that they're giving up. And that's the crossroads I'm at now. I've got appointments with my palliative nurses, surgeon, oncologist, GP etc to talk about my decision and what their opinions might be.
I'm lucky that my family understand and fully support whatever I choose. The same with my fellow cancer patients/caregivers - the support I have is overwhelming, really. It makes me feel like I'm not giving up, I'm merely just tired and it's OK to want to sleep.... forever.
I worry I'll be in pain but I'm already in pain now. Great discomfort and pain and inability to get a good night's rest. I'm sore, exhausted and feel this will be one of my last blog posts. So here's a few details on what's happened.
I had trouble eating again recently - food was getting stuck and regurgitating. So I went into the ED, despite my fears and anxieties. I got admitted, had a gastroscope and they put in stent number 3. But after I went home and was OK for 1 day, my eating became worse than before they put the third stent in. So much so I could not get any water down. It was like the start of all this bullshit back in June.
Wait, that wasn't the start. The start was March last year. It's been nearly a year of pain in my chest. You can't imagine how tiring it is to have pain constantly plague you like this unless you have a similar pain. I wouldn't wish it on anyone.
Anyway, back to ED I went, just before New Years Eve, thankfully - so it wasn't crazy busy. But still busy nonetheless. I got admitted, had a single room finally after sharing the last two, and had yet another scope done. Stent number 4 inserted. The problem? Disease is growing into the stents and blocking everything, making food get stuck, making my esophagus bloat up and just generally shit news.
So yeah. Chemo didn't do much and if I am on this immunotherapy it's not doing much either. Sure, I could try other chemos... but... why? I've seen other people do this and they just waste away. Tired. Tired. So tired. I'm already tired. Can I take chemo? No, I really can't. Not again.
But it's not an easy decision, basically deciding to "stop fighting". I don't take it lightly. All I know is how I want to live - and right now I merely exist. If I were to chase down chemo and other "cures", I know I would want to kill myself everyday from the pain and side effects.
Not to mention, I am incurable. Even if one of the chemos worked miraculously, and got rid of everything and I became resectable, I know that I would suffer without a stomach, and that cancer recurrence is high. And I don't want that.
I don't want years of "fighting cancer". I want weeks, months of enjoying my family.
It's fucking hard and I do worry I'm being rash... but if you were in my shoes, you tell me how to live the day to day. I take showers just to pass time so that I'm standing upright - or I sit upright as long as I can or try to walk around the house. But I'm... so... fucking... tired.... I nearly faint in the shower or I need to sit. I could barely climb the stairs today.
This isn't a life and it will be even less than one if I continue with treatment. I know, because I've already been there.
So yeah.... I guess you could say I've decided to die. To "stop fighting". To "give up". I don't know what better term to use for something like this because it's so taboo. People will say you're young, don't give up! You never know! There could be a cure around the corner!
But these people don't live my life for me. They don't carry the pain for me. They don't understand.
I'm just done. But I hope that my suffering was not in vain. I hope that my shock diagnosis and openness with talking about my disease has helped others in taking better care of their health. Maybe even discovering their own issues early enough to be cured.
I hope that one life, has helped saved many more. Then choosing to die isn't so bad, it's balanced and fair and makes sense and all is right in the world again.
So here's the facebook group we created for young people with stomach/esophageal cancer and their caregivers. We are supportive, knowledgeable and not very PC. We tell it like it is and it's a group I'm so proud of. I love all these people and they love me. We are like a family of dysfunctional diseased delinquents. :)
Join it if it you are looking for support. You won't regret it.
https://www.facebook.com/groups/750867938578349/
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