© C. Ford, all rights reserved.
Okay. I’m going to start with reiterating that what I write here is about my experience with cancer treatment, and my feelings about it, it’s in no way general or applicable for painting with a vague and broad brush.
I am not sorry in the least little bit for not celebrating the first round of chemo being done. I am not sorry for viewing this as a completely non-celebratory event, nor for feeling this way. There was relief, and a fleeting sense of being free. That last one didn’t last long. As usual, the chemo has left me feeling half past dead and seriously dehydrated. So, I’m back again today for IV fluids. I’m only going because Rick refused to let up asking about going in for fluids. These days, he easily recognises the signs of dehydration, so I conceded. Right now, I’d rather deal with being half past dead than going back to 7. (In my hospital, the infusion suite is on the 7th floor.)
It doesn’t feel to me as if I’ve finished; there’s always something dragging you back, and even if I could manage to stay away from 7, appointments and schedules arrive by mail and phone, and of course there’s preparation for the next round of treatment. There’s also the knowledge that you’re going to get completely battered down again, which leaves you with a deep desire to simply stay the fuck away from hospitals altogether.
This all ties back in with the ever relentless positivity business. There’s the bell, which is in infusion/chemo suites all over, you’re supposed to ring it the same number of times as your cycles (in my case, it would be eight), while everyone else in infusion applauds; for me, that’s a hellish notion, and I was more than relieved in managing to slip out quietly. I learned that other infusion/chemo suites have a certificate/diploma thing, which is even worse than the damn bell. Most of us don’t require false encouragement, we all have our own reasons to keep showing up for treatment, even when we are past sick of it, and long to walk away and forget. You experience resignation soon enough in treatment, and simply getting through one phase is just that, nothing more. What most cancer patients are looking toward is the final door, that light at the end of the fuckin’ tunnel, when you get to walk away for real. For other cancer patients, there is no exit door, they’ll be in treatment until they die, and in such cases, it’s really callous and rotten to get all positive and celebratory over a single phase of treatment. Chirpy, trite sentiments do not help in the least, and they give people something empty to say without having to expend any thought on the actual person and their situation. Sometimes, there just isn’t anything to say, and that’s okay. Silences don’t have to be filled every single time, and silence is better than a perky positivity landing in compleat awkwardness.
This is not to say I don’t understand someone having joy over getting through one phase or being happy for me; it’s that I don’t feel that joy myself. I’m still looking at months worth of treatment and pretty much the rest of this year being dominated by cancer. I want my life back, and if I get that, then I’ll celebrate. Quietly.
And now I have to get ready to return to 7.
Octo-salute to Rick!
Resignation: you gotta do what you gotta do. It’s like some hellish ritual cooked up by those warped death cultists.
I admire your strength, and I hope I can be as strong if my number comes up.
Marcus, I shall deliver the salute! Yeah, it is a matter of resigning yourself. You have no control, and for us control freaks, that’s not fun.
If it does, I will be there for you. Always.
Our hopes are with you for what little that may help. Don’t suppose a baby raccoon would cheer you up?
My daughter did much better with side effects from her chemo but now she’s getting hassled by her insurance for trying to get a second opinion on upcoming surgery -- oh there will be but how much is up in the air.
A baby raccoon is always cheering! I’m really glad to hear your daughter did well with the chemo. Fuck insurance people, fight them, hard. The expense of cancer treatment is unfuckingbelievable, and yeah, for most people surgery is a part of it. I have two surgeries coming up this year.
The positivity stuff must be exhausting.
It s better to be prepared for the worst and be suprised by the better, than the other way around. I think artificial positivity does more harm than good in this regard.
Keep fighting. You are not alone.
Your cancer, your business how you deal with it. It’s nobody else’s.
I agree that positivity does more harm than good, especially when it is promoted a necessary to ‘win the fight against cancer’. Just no.
As Anne says, your cancer your business.
And again, thank you for these thoughts, also I hope the rehydration perks you up.
My best friend talked a lot about how infantalizing she found all the positivity, as though she could forget exactly what she was going through with! bright! colors! and! positive! thinking! She felt it was all an attempt to take away even the freedom to be pissed off or sad.
You’re the one going through it. You’re the one who gets to decide how you feel and how you process that.
I hope the hydration helps. I’ve informed our rats (Steve, Bucky, and Clint) that you’re a good person who gives chocolate to rats and they’re rooting for you too.
Caine, what hell you must feel at times I can barely imagine. I agree with the over bearing, relentless positivity that infuses so many parts of our lives when all we need is to be left to deal with things in our own way.
One day I will tell you of some of my run ins with the positivity push, but today isn’t about me, it is about you, your needs and wants as you try to keep control.
If being angry is what gets you through your day, be angry. If being rainbows and lollipops is your thing, so be it. But do it your way.
I tried to send you “thoughts and prayers” but it seems that service has been contracted out to Congress, so I give you a salute for your honesty, a three thumbs up for your writing, and a hope that they continue for many years to come.
And a bloody big man hug for Rick.
^This. Can’t be said often enough.
And I totally get not wanting to celebrate, we’re the same here, no celebrations when we receive good news, just a sigh of relief, of temporary relief. Happened today, my mom got the results from her last CT scan and it looks completely different from the March PET scan. In March both of her lungs were severely affected, there were tumors all over the place. Now it’s all clear, complete remission in the lung area. Sigh of relief, of course, but we know from clinical trials that it takes on average 11 months for resistance to develop against the drug that did this. And we’ve been through this before, so far it has been diagnosis-drug-toxicity-new drug-remission-relapse-new drug-remission… we know what comes next. So, yeah, wonderful news, new treatment has worked, but no one feels like celebrating. We’ll probably go and buy a few new plants for the garden this weekend, but we hardly need an excuse for that. :)
Home now. Thank you all so much for being so understanding, I truly appreciate it.
TMM:
It is that, to a large extent. Other people don’t want to feel uncomfortable, so you aren’t supposed to talk about cancer, and you aren’t supposed to be angry, and you aren’t supposed to breakdown and cry, etc. It’s not only absurd, it’s harmful, this notion you should look on the bright side of having this damn disease. It’s much worse for someone to keep everything all bottled up, that just adds to the stress. People really do need to talk. Today, there were two bell ringers in infusion. Each one, it was their choice, and they only rang once. One woman who did so was in the chair next to me, 84 years old, and today marked the end of all her chemo and radiation, which she was doing at the same time. She’s terminal. While she was spending time in the lav, her daughter started talking to me about that, and we had a good chat about the lousiness of it all, and coming to acceptance. The 84 year old was bright, vibrant, and so not ready to die, and to think of her leaving the world soon is a deep sadness. Cancer fucking sucks, and I wish to hell people would stop trying to find that “bright side”.
DavidinOz:
Oh please, feel free to share. I keep my pity parties short, doesn’t do to let them run on. ;)
Nightjar:
Yep, it all becomes routine. Very routine. I’m glad to hear it’s good news this time around, I hope it’s the same next time out.
Hee. I came home with a new plant today. :D It’s an Arum of some sort, I’ll take a pic and have you plant mavens ID it for me.
I hope the fluids help.
Feel what you are feeling. All I can do is say “I’m listening”. It’s not my place to judge your attitude. Everybody is different.
For what it’s worth, I don’t think much of the positive attitude business.
Nerd, thank you. I don’t think much of the positive attitude business either.
Voyager, thank you, they always help. And that Cloud 9 you sent is fabulous, and I’ll be using it a lot come radiation time. Also, finally had the tea you sent, it’s excellent! Thank you so much for that.
So how the fuck are these people supposed to feel every time they hear that stupid bell and know that they will never get to ring it?
I get ague flashbacks to pre-natal courses, where they only tell you the good stuff -- babies are lovely, it’s a natural process, the pain is all in your head, if you think positive it will go faster, etc. but they leave you woefully unprepared for any looming disaster. And it’s shite, because anything that doesn’t go according to the stereotypical no-pain-relief vaginal birth plan is like a shot out of the blue and even more of an upset than if you had some inkling about it and at least check off the list of possibilities in your head. It pissed me off to no end, because occasionally someone would have a question about, you know, what if…? And the general reply was along the lines of yes, that can happen, but it’s so rare you shouldn’t worry about it. It’s not quite the same thing as all the fake positivity you’re facing, but I see echoes: think no bad thoughts and have no bad outcomes. In professional medical establishments. But maybe it’s just me, I like to know the worst and do some preliminary agonization with all the knowledge before telling myself I’m being silly and everything will be (mostly) fine.
Anyway. So glad you have Rick to look out for you, and I’m so glad you concede. :) He deserves like 50 bajillion medals.
And you can borrow my sledgehammer and smash all the bells into pieces anytime you like.
rq:
:Blinks: How in the fuck does anyone say that the pain is in your head when it comes to childbirth? I don’t, I can’t…WTF? I find the mere idea of childbirth as terrifying -- it’s not just the pain, which is serious bad business, but so many things can go wrong, and too many women still die in childbirth, although thankfully, not nearly as many as used to be, but still, it’s a dangerous business, bringing a sprog into the world.
And it’s not just the birthing, either. Having an infant at home is an incredibly trying, rough time, and I can’t imagine going into that without every fucking scrap of knowledge I could get. It’s like the whole prolapse thing -- even though it happens to at least 30% of ostomy patients, no one tells you about the possibility of it happening.
And yeah, I’d say it’s a lot like the positivity crap you find in cancer treatment, and it’s ridiculous. And dangerous. I’d think this would be especially dangerous when it comes to having children, things are so much better when you know about things, it helps you to cope. When you don’t know what’s going on, it makes everything worse, much worse than it should be. Unbelievable.
TMM:
Awww, give them all the cuddles for me! I’d love photos to post for a Raturday. (That’s a hint as subtle as a brick.) :D
Apparently, if you keep a positive attitude, then you will realize that it’s not actually pain (or, not actually bad pain), it’s discomfort, and everyone knows that you only amplify any discomfort you might be feeling if you freak out about it, so stay calm. Also women are disconnected from nature due to the influences of the modern world. Anyway I’m getting way off topic on this, but suffice it to say, false positivity is The Worst thing out there. Because fuck you, medical professionals withholding information even when asked directly. Mellow Monkey @8 says it best, it’s infantilizing as all hell, not providing information and then dressing up that ignorance with balloons and colourful bubbles, because sick/pain/medically distressed people are distractible as small children or puppies.
As the others have said, your cancer, your business.
I don’t have to make it through cancer, but I know that sometimes, the only response you feel towards such a thing is incredible numbness.
Relief, yes. Joy? That’s no even anywhere near the picture.
+++
I’m glad mine was run by sensible people who kept telling us that
a) there’s no medal for not getting pain relief (sadly my kids had other plans)
b) This can go wrong and this is what we’ll do and let’s talk about options before you’re in a situation when informed consent flies out of the window anyway.
rq:
That’s weapons grade bullshit, and that’s an understatement! This isn’t off topic at all, the way this bullshit infests medical treatments. Disconnected from nature my ass. Do those people sleep in trees and gnaw on raw meat? No, and they’d be shocked if you said as much in a retort.
Fuck yes, and you have to pry information out of doctors, they never just tell you what you need to know, and you have to keep prying information out one bit at a time. That alone is crazy making. Y’know, I wish, with all my heart, that my friend with colon cancer didn’t have it, or have to go through all this crap, but I am beyond grateful to her, because almost all the information I needed came from her, not doctors or nurses. Treatment would have been 10 times worse for me without knowing anything.
Giliell:
Now that’s a proper way to approach things, and I’m glad you had people with good sense and were practical about matters, instead of pretending nothing bad might happen.
This, so much, is how I wish it had gone down. Just to know that there is actually a support system in case, not because I’m having hysterical (used on purpose) thoughts about disaster. And even in the process, it was ‘now go here’ and ‘sit up here’ (followed by the midwife-nurse* approaching me with a long steel blade and never saying a word until Husband intervened and said what’s that all about, apparently my water wasn’t breaking fast enough for this woman) and ‘put this pill in your mouth’ and if I stopped to ask for explanations, I got dirty looks and frustrated sighs and the feeling that I’m acting up when I shouldn’t. Thank the heavens Husband was there, but seriously? You give me a pill, I fucking want to know what it’s for because when you tell me your machine is saying there’s no contractions but I’m goddamn feeling contractions, I’m not going to believe you when you say it’s just something to make it go faster. I’m not sorry about that.
I think in general the medical establishment is catching up to the fact that people want to be informed, but it’s amazing how much they think they’re ‘protecting’ the public by not sharing comforting information, instead of tossing people into the unknown.
Anyway I don’t want to talk about this anymore because it’s one of the big reasons I categorically refuse to have another child -- in this country.
* They’re called midwives but they’re trained medical professionals, just not full obstetricians. The obstetrician is on standby (has surgical privileges that the midwife-nurse doesn’t).
Same here
That bell idea sounds like a cheap gimmick for a fast food joint. I’m so glad you’ve managed to slip away.
Hi Caine:
I’m hopeful that somebody didn’t berate you for not ringing the bell -- that would be beyond inappropriate. I remember telling off a physical therapist who scolded a women for wearing a hat (she was bald and uncomfortable). The P.T. said the hat was “stupid” and she should just be “bald.” After she left I went over and punched him in the arm (not recommended -- I could have got in trouble). She wanted the hat. She was very uncomfortable being bald. The hat was not stupid. I told him when he has cancer he can let his bald-flag fly -- but since he doesn’t he can really just STFU.
I remember originally thinking -- OK -- this will be done by July. Than -- ok this will be done by the end of October. But it won’t. It’s really all of 2018. I truly hope it doesn’t turn into 2019. For either of us.
Victoriajoy
Joseph:
It’s a silly idea. Some people want to do it, and I think that’s fine. I just wish it wasn’t presented as obligatory. When I was in on Wednesday, a young Muslim woman was waiting, it was her first day, and one person who wanted to ring the bell was talking about it, when the young woman leaned over and whispered “what is that for?” I explained, and she looked appalled.
Victoriajoy, no, I didn’t get any flak for no bell ringing. The nurses always have a good idea of who will want to do it, and who won’t.
You. Are. Wonder. Woman. I hope the ass learned a lesson he’ll never forget. I feel so bad for that woman, she didn’t need to hear that shit from anyone.
Yep, I’ve done same exact thing. Now I figure if I’m out by November, that would be great. I don’t even want to think of either of us heading into ‘019 with this hanging around our necks.