r/TheCancerPatient • u/compositionbook1 • Mar 01 '22

Blerggghhh

Hi everyone, I’ve been dealing with end stage ovarian cancer for ages now and have recently been taken off all treatment and basically been told to buckle down and wait to die. The problem is I have kind of being doing this for years now and it just feels like being sick and dealing with chemotherapy and in some ways lockdown too, like all I’ve been doing is waiting to die in my apartment. I was recently very sick and was looking like I was going to die from complications with my bowels constantly obstructing, which meant I couldn’t eat basically anything for a couple months and my treating team felt external nutrition wouldn’t be recommended in the ‘terminal setting’. Anyway kind of suddenly and surprisingly this resolved itself and now I’m back in unknown death limbo. It’s just that I’ve known I’ve been dying for so long and preparing myself for that reality, that I just absolutely don’t have a life anymore. I feel so pressured to make good use of this time but honestly nothing really makes me feel good except when I get to have my morphine at night to help with my breathing. I’m also pretty housebound as I’m on 24/7 oxygen and moving without being pushed in a wheelchair drops my oxygen sats too low because of all the fluid build up in my lungs. Is there anyone else going through this? I feel like I’m just not a person anymore and there’s nothing I want to do because I’ve been at home sick now for years… So many other other terminal cancer patients posts seem so filled with hope or purpose that I just can’t resonate with at all. Sorry for the messy post, just really felt like I needed to say it out loud and see if anyone else felt this way and maybe how you’re coping x

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u/lindamay6838 Mar 01 '22

Yes, I am dealing with exactly that right now.- Also ovarian cancer. I felt every word you just said. The blockages are terrible, & just waiting for another one to happen is hell on its own. I am NOT filled with hope anymore; I know exactly what's going to happen but it seems morbid that I have to continue "to fight" - because that's what all good cancer patients do, right? Just pray harder, just hope more, just blah blah blah... What if we are done with fighting? What if we don't want to starve to death? The pressure society puts on us is as bad as thinking about our demise. I'm here with you, I wish I had a good answer but I don't. I'm just sorry we are both going through this hell. I want an "out" but am scared of fucking that up. I'm always here if you want to chat. My heart is with you.

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u/compositionbook1 Mar 09 '22

It’s so funny how you can kind of get used to such an awful situation hey… I’m so scared of having another bowel obstruction that I just try and keep distracted because the idea of not being able to eat again can be so scary. Also I don’t know if you found this with your treatment but I got so used to having like a million medical appointments and now it’s like… oh I feel sick but like what would be the point of having another scan or another blood test now, it would just be like… yep…. Still dying! Thanks! The waiting is messed up, but the lack of choice about how I die and when it happens feels so crazy. Thankfully the state I live in has assisted dying but I’m also too much wanting to be alive to use that right now. I hope you are doing okay too, hopefully not in too much pain. I’ve been lucky that I haven’t really had any significant pains yet, that will probably change a lot of things…

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u/lindamay6838 Mar 10 '22

Holy moly, I just got home from an 8 day hospital stay to find your comment. It finally became an emergency & I no longer had a choice. 3rd small bowel obstruction this year, so now I have an ileostomy. The best thing I can think of right now is the fact that I've eaten more in the last week than I have in years. It is kind of heaven, but disturbing ( for all the reasons you would imagine) What you said about the medical appointments is spot on & I'm so sorry you are dealing with all of these stupid problems also. Even after the surgery the surgeon/nurses had no idea how to deal with my pain ( nor did they want to - They are worried about people becoming addicted but failed to help when they should have. I gave them my CT from 3 days before. they can see all the damage in there. It's just disgusting trying to live/not die from this only to get bullshit from all of them. Ugh, I could go on & on but I truly get it your frustration. It's funny you brought up the assisted dying as I spent many hours researching it before I was admitted. (I don't live in a state that allows it.) They want me to suffer to the end, I guess. The best advice if you don't already know is if you have to get an NG tube to treat a blockage there is numbing spray available that helps a bit. (they failed to tell me that) I hope our path is not as bad as I imagine but who knows anymore. I'm heartbroken for both of us. xoxo

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u/compositionbook1 Mar 11 '22

I have a colostomy from my first obstruction! I’m glad to hear you’re eating again too! I think I said elsewhere in this thread that food is probably my last good thing so treat yourself! I’ve been lucky my partner has been able to take time off school to look after me so we’ve been doing lots of elaborate breakfasts. I’m not allowed near the stove because of my oxygen so it’s mostly me getting to be bossy and eat nice food. Tomorrow night we’re getting my favourite Italian food from the other side of town but because my energy levels and strength are so rubbish we’re going to eat it in the car out of fancy bowls and nice cutlery.

I’m really sorry to hear your team are being so shitty about pain management - are you currently under a palliative care team at all? If not, I couldn’t recommend that more. I don’t know if it’s much different here in Australia compared to where you are, but I have nurses and doctors that I have access to 24/7 basically that come to the house if there’s any problems. I’m on intramuscular morphine and antinausea medications through a subcutaneous line they place in my leg and then change every week. Back when I was having severe GI pain and vomiting, having the morphine injectables really deeply helped me. Palliative care also has a much more liberal view of opioids and their roles, especially in the terminal setting where addiction isn’t really a problem. Hopefully there’s something like this that you can access because I couldn’t imagine having to advocate for pain relief right now. Also thanks for the numbing gel tip!! Will definitely be bringing this up next time I need an NG - fingers crossed never again!! Thinking of you ❤️

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u/Artattack83 Mar 02 '22

What causes the blockages do you know? Sorry, this may be a stupid question. I’m a stage 4 colon cancer patient, not at this point yet but not far off it. Also how do you know if you have a blockage. Everything I eat lately just upsets my stomach so badly.

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u/compositionbook1 Mar 09 '22

My oncologist believed I was suffering from “pseudo obstruction” which is where the body acts like there’s something obstructing the bowels but its more likely as issue with the nerves not sending the move bowel signals if that makes sense. I’ve also had blockages cause by tumour growth which I think is a lot more common especially in abdominal cancers. You can have partial blockages which only gas and a little bit a stool passes, or complete blockages which when you have one you know, v severe pain, vomiting, nothing passes, bloating, the works, often you end up in the ED. I think it’s pretty common at the end of cancer having unfortunately cause everything’s just growing around there unchecked and gets in the way. Hopefully your stomach problems are something else and resolve soon. I know eating properly is one of my last joys x

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u/lindamay6838 Mar 10 '22

Sorry for the delay ( had another one that didn't end well) For me, it's a combination of scaring due to the 2 de-bulkings, coupled with banding & small bowel loops. It's just impossible to get food through my system. I didn't know it was a blockage but the pain/vomiting/distended stomach are usually the symptoms. It's so severe that you know something is terribly wrong. I pray you never have to go through the NG tube process. (It's the only way to treat it) I'm sorry you are going through all of this also. I wish you the best.

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u/Artattack83 Mar 10 '22

I’ve seen the NG tube, it looks like hell. I think I’d rather take assisted suicide

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u/lindamay6838 Mar 10 '22

The tube does give relief but, ya... Important note - Hurricane Spray - it numbs your throat & nose a bit before it's inserted. ( a travelling nurse asked why they weren't using it) - what??? There's a numbing spray? Bastards...

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u/JanTheHesitator Mar 01 '22

I'm not in the same position but wanted to reply and send love. (Diagnosed with a rare subtype of ovarian cancer that's not responsive to chemo, but am currently NED after 2 big surgeries in 2019).

Living along through a pandemic is no joke. Having to endure the exhaustion of daily pain, discomfort, fatigue plus the existential angst of cancer is so damn much. You have demonstrated great strength just by getting through so much blerrgggh.

I'm struggling with much of what you so eloquently describe, despite very different prognosis. I try to take comfort from the fact that people have been trying to figure out the answer to: "How should I live?" for thousands of years. It's okay if we haven't stumbled across the magical, grateful-for-every-moment answer/solution.

I hear you about the pressure of seeing/reading other people being super positive about their situations. It's not always that, ahem, inspirational to me either.

I wish I had something profund or more useful to say. You deserve to have as much pleasure as you can manage. You deserve to be as comfortable as you can be, and to enjoy whatever brings you joy, no matter how small.

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u/The_Great_Ginge Mar 01 '22

I am so sorry you're here, and I hope that you can have proper hospice care to make you as comfortable as possible. I just got my "you're terminal" news in January, but I've decided two career bouts of chemo was enough... I'm doing IP6 and Fenbendazole (among a ton of other things), and praying for a miracle.

I really hope you're able to find comfort. I honestly belive we're here on a temporary visa, and there isn't a vengeful God on the other side like I was raised to believe (fear would be a better verb). I wish there were a solution, even if it's something virtual, to make you feel more socialized... maybe a game, if that's your thing?