The chemo pump.
A familiar sight, I’m attached to the chemo pump again. Chemo brain is in full force, so if this post is disjointed, that would be why. I’m also having some motor problems with my right hand, so there may be may typos. (Motor problems thanks to the oxaliplatin). Just how much cancer changes and takes over you life has been a thread in these chronicles from the start, and sometimes that sense lowers, and you don’t feel it as much, and other times, it feels like it’s bashing over the head, pile-driving you into the ground. Yesterday was one of those days, left me frustrated, annoyed as fuck, and completely out of control of my own life.
Because it’s cancer, and presumably, you don’t want to die yet, you end up at the mercy of, and under the thumb of medical and insurance. Last week, I agreed to Neulasta injections so I would not be pushed back on chemo anymore. For whatever reason, my oncologist left out some rather vital information about this fucking process, and he will be hearing about that in two weeks. Not living in town, I was not about to come back into town on Fridays to have my pump detached, I do that myself. Now I find out that the Neulasta cannot be administered until the chemo pump is detached. Neulasta comes in the form of patch with a sub-q needled, timed to deliver medication 26 hours after the chemo pump is detached. It’s a peel and stick:
So, I should be able to do this at home too, right? Wrong. Because it costs $6,000 a shot, the insurance companies have a rider that it must be administered at a clinic or hospital. Here’s one big FUCK YOU to fucking insurance companies, you all fucking suck. What in the fuck do they think I’d do with the damn thing? Sell it to a black market? Feed it to my dog? Flush it down the toilet? Well, one thing is for certain, you can’t trust a patient with it, oh no.
So, this week, that means our schedules get all manner of fucked up, have to go back in this Friday for less than 5 minutes worth of ‘treatment’, and for that, we get to waste time, pay for fuel, and have to register for the less than 5 fucking minutes, which means handing over another $25.00 copay. We’re being $25.00 dollared to death. Naturally, we tried to change the schedule so we could work things out so at least Rick wouldn’t be burning up more vacation days and losing work time. Could we schedule for Monday? No, because people don’t seem to think working on Mondays is cool. We can’t switch to Mondays until Cycle 6. Maybe. Anyway you look at it, we’re getting screwed over with the sharp end of the stick.
I could feel the thin thread fraying and getting ready to snap. You lose control over your life from the moment you hear ‘Cancer’. That’s it, you’re sucked into Cancerland, and there’s nothing you can do, and pretty much all of it sucks fucking dirt. There’s no good place to discharge all the anger and frustration, either. It just ends up randomly leaking out all over the place. I really have to get that throwing wall set up. I could smash a whole store full of glass right now.
It’s also a major annoyance to see how much rural people get screwed over. Sanford keeps expanding, they’ve about eaten up a good portion of downtown Bismarck, but will they expend any fucking money on satellite clinics? No. You live rural, you get one big fuck you from hospitals. They don’t give one shit about how far you have travel, or how often. Oh yes, you can apply for an apartment in Bismarck, but this assumes people have no lives whatsoever in ruralistan. Around 50% of the people I’ve met in chemo live way out from Bismarck, anywhere from 1 to 6 hours out. Even when Sanford does bother to try and set up elsewhere, like the hospital they’ve started in Dickinson, they don’t have an oncologist, and they most likely simply won’t do oncology there, people will be referred to Bismarck. And while a hospital is needed out Dickinson way, I’d rather see satellite clinics, which could at least deal with things like Neulasta, so people wouldn’t have to travel so damn far for five fucking minutes. It’s yet another reminder that above anything, hospitals are a business, and no matter how they represent they are all about patients, they aren’t. At least not the rural ones.
Even with all the noises that would be made about how they can’t do satellite clinics because blah blah bureaucratic bullshit, why not an outreach program, to train local physicians so they could do the 5 minute crap, like detach pumps and stick a fucking patch on your arm? I’d be delighted if I could get this shit done in New Salem or Glen Ullin.
I suppose I’ll get back to painting, if I can manage to hold a brush.
ETA: oh gods, that fucking Oxali. I went out to put seed and suet out for the birds studio side. It’s not even terrible cold out, 35F or so, and my fingers are numb, as are my lips, and the cold hit my throat so hard, it almost seized up and went straight into my chest, making even shallow breathing hurt like hell.
“Because it costs $6,000 a shot”
Damn, that would be enough to get me to quit drinking.
Not nearly as disjointed or typo’d as you might have thought.
Busterggi:
If I drank, me too! And thank you.
Seeing the same thing in smaller scale here in the wild west. Ever since everything must be profitable, small towns and villages get screwed over more and more. No apothecaries, no dentists, no hospitals, everything gets congreagated in bigger and bigger cities. The life is being sucked out of the country and I wonder who will grow our food when it is all gone?
That those small costs keep piling up makes it so, so much worse.
Charly:
It’s a good question, and no one answers it. Rick was saying all the farmers should do the same: no more shipping anything to a convenient city. You want veg? Come here and get it -- it’s out in that field. You want wheat? Here’s a scythe, have fun, and you can mill it yourself. Want beef? Well, there’s the cow…
Ugh, that’s frustrating as fuck. Sorry Caine.
Oh, and I must have a throwing wall too.
Jim:
Ingredients: one wall. Several cheap shower curtain liners. Attach liner to wall. Throw shit.
Urgh
Health care in rural areas is such a fucking problem.
The rural areas of east Germany are seeing a massive shortage of GPs. The old ones retire and no young person is willing to sacrifice their life for the sake of providing health care.
Giliell:
Yeah, same here. Everyone wants to be in the city, for money and convenience.
Dwindling services for rural areas seems to be a widespread problem.
One reason here for closing down rural health care services is that the municipality pays for the services, but the patient or the state welfare agency (for costs over 25 euros) pays for the public transport, taxi and ambulance trips.
One of the problems of living in Dah YooPee, was the lack of access of medical/dental specialists. The Redhead had a 2 hour drive to see an OB/GYN. Other specialists could require a 4 or more hour drive, or a plane trip.
I don’t know what the real cost effective solution is.
Yeesh. Money rules everything around us.
It’s the same in Canada. We have regional cancer centres in the big cities that most people have to travel to. It isn’t too bad in southern Ontario, likely not more than a 2 hour drive, but in the northern parts of Canada it can be hundred of miles and several days of travel to get to a center. In Ontario we do have a pretty fair homecare system, though, with local community RN’s who make home visits (even to remote rural areas) for things like removing pumps.
Visiting RN’s would be grand! I’d be all over that if such a thing existed here.
That sucks, Caine. We live in a rural area as well and we used to have a satellite clinic here, but it closed a few years ago because when public spending needs to be cut, health and education in rural areas are always the first things on the list apparently. We can’t complain too much as we are only 20-30 minutes away by car from the city (the advantages of living in a small country and next to a small city), but of course when we get there we don’t have where to park the car, and our public “transportation” is something no cancer patient should have to endure. Even ambulances have trouble parking at that hospital. It’s ridiculous.
I do hear you about the loss of control thing. Ever since my mother was diagnosed it’s like we simply became unable to plan anything ahead. Cancer is in control, and because surgery was never an option for her, we are at the mercy of whether it is responding to treatment or not, progressing or in remission, we never know how many months we have left until resistance to treatment appears and we never know what treatment is next, or when we will run out of therapeutic options. We are not in control of any of that, but all of that is now what controls our whole lives. I know it’s a reality we have to adapt to, but it’s still so difficult to accept. I guess anger never goes away.
Nightjar:
That’s a whole other litany of complaint. For all the acreage Sanford has claimed, none of it has gone toward parking, it’s a nightmare. My oncologist complained to me about, he’s been ticketed more than once because he can’t find a place to park, and he doesn’t get back to move his car on time. We’ve taken to parking at the pain clinic, then taking the tunnel over into the main hospital.
Yeah, that exactly, it’s very difficult to accept. And no, the anger doesn’t go away. It recedes at times, but it’s always there. Just got back from Bismarck and getting the peel ‘n’ stick. There’s nothing complex about it, I could easily do this at home, but no. Much better to waste our time and money. The whole thing took 3 effing minutes.
I’m so sorry Caine. This all majorly sucks for you and it -- along with your diagnosis -- are unfair, unwelcome, unappreciated and fucked up.
That’s probably the biggest problem I’ve had (besides the cancer) the complete loss of autonomy. I do not get to choose, select, barter, suggest, beg or demand any part of the scheduling. Thursdays are better because of my caretaker’s work schedule? Doesn’t matter the MRI must be on Tuesdays. Prefer afternoon appointments because I’m usually feeling better? Sorry -- you must be at the lab at 6:00 am. And on and on. And I don’t complain because I want to get better -- but learning to realize I have NO CONTROL over even the most basic of things is/was my biggest challenge.
Sounds like the Oxali is giving you major neuropathy -- ouch! Try to stay warm and don’t pop outside unless you’re completely covered up warmly with your mouth and nose covered. Warm warm warm!!! Warm tea with lemon -- and add a drop of whisky -- just a drop. I’ve done my first “getting chemo and having liquor” test and it was fine. Cheers!!!!
Victoria
Victoriajoy:
You have every sympathy. It’s unbelievable, how much every aspect of your life gets tumbled over, and you’re just expected to adjust to it. I didn’t complain at first. I do now.
I’ll give it a try, cheers back atcha! Yeah, cold is not my friend these days.
Caine,
Ok, that’s even worse than here, then. Doctors, nurses and everyone who works at the hospital have dedicated parking lots. It only sucks for the patients and to whoever takes them to hospital (including ambulances doing non-urgent services).
That really sucks, I am so sorry Caine.
Ah yes the glorious wonders of for-profit-health care. Whenever I hear (german) local politicians and health people say “Hm, Hospital XYZ is not profitable”, i really want to just punch their faces with a sign that says:
Healthcare is for survival, not profit, you arschkrampen!
Avalus:
I’m good with that! Capitalism, it corrupts everything.