Notes on My Chemotherapy
charlieharrington.com
charlieharrington.com
Doctors are still mostly operating under the old wisdom that it is not a problem for those under 60 or so.
I had blood in my stool at 36, and after convincing my doctor that I wanted it checked even if it was 'probably a hemorrhoid', a sigmoidoscopy found 3 polyps. I was lucky that the big one was right at the 'front door' so to speak, otherwise the sigmoidoscopy would have not been deep enough to find them, and I might not be writing this comment today.
He was saying that to save lives
Might he rest in peace
It's good to promote diagnosis, but let's also put this in perspective: he had family history of this kind of cancer. This kind of changes everything when it comes to your personal risk, just like your grand parents having Alzheimer indicate a major risk that you will get it as you age as well.
This is why (good?) doctors also ask for conditions running in families.
I was 41 when I was diagnosed with colorectal cancer. I had blood in my stool and my GP misdiagnosed me due to my age. If I hadn't pushed the issue, I wouldn't be here now.
If you ever have blood in your stool, get an exam. Preferably by a gastroenterologist.
mind sharing how the blood in your stool looked like? What was the color etc? Was it there always? Was it occassionally? Was it ON the stool or mixed through it?
And when you finally got diagnosed. What stage were you in? Are you healed now?
And how long did you put it off?
Sry for asking so much.
I'm fully healed now, though I have a permanent colostomy.
few more follow ups if you dont mind :-) so there was no blood in or on the stool itself? and what was the quanitity on the toilet paper? just a small stripe or a lot? and how frequent was it throughout the year? monthly,weekly,daily?
thanks :-)
It was infrequent. My doctor speculated that if I had a firm stool, that would cause the tumor to bleed.
https://www.mdanderson.org/publications/conquest/colorectal-...
Also, if you have a family history of colorectal cancer, you should definitely get examined earlier.
The most important part of your sentence is "lifetime". Prostate is 11%, but most people don't get prostate cancer in their 30s.
A better doctor confirmed the diagnosis with additional tests. Growing belief that a false negative may mean a worse variation of the disease. Episode cost me an added year of organ damage.
I don't know how true it is, but it may explain why docs in general refuse to go too early on exams.
In my case it's probably genetic. My grandmother survived cancer by having part of her colon removed. She had a bunch of siblings who all died of cancer or undetermined causes; the difference is that she went to the doctor and they didn't.
As with most things, procedures have risks and benefits. Colonoscopies have risks too, right? Bowel perforation (bad news), bleeding, infection, etc. So, balancing that with the obvious benefit of catching cancers early, the USPSTF (United States Preventive Services Taskforce) made some recommendations on when patients should undergo screening for colon cancer.
As of right now, per their highest level of evidence recommendations, you should get a colonoscopy starting age 50, and every 10 years thereafter. Note, I said colonoscopy. Not sigmoidoscopy, not stool testing, etc. Those have different guidelines and intervals (but do still start age 50).
If you have family history of colon cancer, or certain diseases that put you at higher risk for colon cancer, the recommendations are significantly earlier. In the case of a positive family history, you get a colonoscopy age 40 or 10 years before the earliest colon cancer diagnosis in the family, whichever comes first.
The reason I bring all this up is to point out that if you go to the USPSTF web site, you'll see an evidence level B recommendation to start screening age 45 as well. You'll also find the American Cancer Society has colonoscopies starting age 45.
The evidence and safety for colonoscopies at earlier and earlier ages is getting better and better. Doctors should absolutely be screening well before age 60. If your doctor isn't following uspstf guidelines due to practicing outdated medicine (some variation due to personal preference/evidence based practice I guess is acceptable), in my not so professional opinion you should probably find a new doctor.
https://www.mayoclinic.org/tests-procedures/capsule-endoscop...
https://www.hopkinsmedicine.org/health/conditions-and-diseas...
Here’s some food for thought regarding pill cam endoscopy:
https://www.nejm.org/doi/full/10.1056/nejmoa0806347
“ The use of capsule endoscopy of the colon allows visualization of the colonic mucosa in most patients, but its sensitivity for detecting colonic lesions is low as compared with the use of optical colonoscopy.”
https://www.healthline.com/health-news/dreading-colonoscopy-...
Some of these can be ordered without a prescription online. So if you want to get screened and can't justify or afford a colonscopy, these are worth checking out.
One thing I haven't seen mentioned yet is that being diagnosed with cancer can give you some anxiety. Doctors can prescribe an anti-anxiety medicine like escitolopram to take care of it. Having a clear head during a hard time can help you make better decisions, ask better questions, and get better care.
If you've been diagnosed with cancer and want to talk, email me: [redacted].
Fuck cancer.
As for the fatigue, just the chemotherapy doing its stuff, never had fatigue from the cancer.
Thanks for the information, I appreciate it.
Please do see a doctor and educate yourself if you have symptoms like blood in your stool, urine or if one testicle have a lump or feels slightly harder (internal tumour) but also educate yourself before taking any medication! It may save your life taking it but it may also ruin it.
Edit to add: Also remember that cancer often doesn't hurt at all (at first) so don't be one of those that don't go to the doctor because it doesn't hurt. Not having pain is often A Bad Sign. Off you go!
People having issues like that with escitalopram are a small portion of the people for whom it’s a life-changing treatment for anxiety and depression. I put off getting on it for far too long because of scare stories.
Edit: no blood, please!
The reason single payer systems work is because they're at a specific advantage for all of the constraints that healthcare systems face, including a better overall incentive alignment.
That's exactly my argument, regulatory capture precludes a market from being free.
> It has a unique set of constraints
I fail to see how the points you list make it unique.
> lack of choice (you don't get to choose which hospital you go to in a lot of circumstances)
Then make that possible. I live in Japan, I choose the hospital/clinic/doctor that I see, for everything.
> high barrier to entry
For whom at with what?
> constantly changing regulatory environment
Yes, so deregulate and move towards a freer market.
> The reason single payer systems work
Do they? If you have a heart attack in the US vs one in the UK then you are more likely to survive in the US. Blanket statements about what "works" are meaningless when talking about complex systems with multiple outcomes across large populations. The US outranks many countries that aren't using its system in many health outcomes, and if you have insurance then you will get a very high standard of care. Poor health outcomes for those at the bottom are bad but that's only one way to measure efficacy.
Japan has a single payer insurance system but I can also point to many negatives, as well as many positives. None of these provide any refutation to a free(r) market providing the benefits that other markets receive.
I don’t believe you will be choosing which hospital you go to if you’re unconscious, or facing a serious acute medical concern placing you in desperation. Coincidentally, those tend to be the times when costs also skyrocket.
—
The issue with treating healthcare like a free market is that some people just won’t get healthcare. Free markets aren’t going to build a hospital in a small enough town because the cost can’t be justified.
Your point that the US outranks most other countries is perhaps true for some things, but completely false for baseline measures such as infant mortality, life expectancy, cost per capita, etc. As a country the US can sometimes pull ahead on specialized care in part because of a prevalence of supporting technology compared to other countries, and I’ll grant that. But our system is hardly “better” than other developed nations on almost any objective measure.
Firstly, emergency treatment is a tiny sliver of all healthcare, in terms of volume and cost. If you want to argue about healthcare in general based on that - nay, on the miniscule number of unconscious people admitted to hospital - be my guest, "never interrupt your enemy when he is making a mistake" and all that.
Secondly, I think you should look into how the Japanese system works before making statements about it. Your beliefs are of no concern to truth or proper analysis, especially when they don't accord with reality.
> The issue with treating healthcare like a free market is that some people just won’t get healthcare. Free markets aren’t going to build a hospital in a small enough town because the cost can’t be justified.
The issue with treating computing like a free market is that some people just won’t get computers. Free markets aren’t going to provide computers to small businesses because the cost can’t be justified.
I think the 70s is calling and wants your argument back. Before you reply with "computing and healthcare aren't comparable" they are, in fact, incredibly comparable. Health is like computing power, the more you have the more you want and can do, and hence - due to demand and people seeking to satisfy that demand - the more you can get. Reading these forums it seems like a quite profitable endeavour that is unlikely to end soon, much like healthcare.
> Your point that the US outranks most other countries is perhaps true for some things, but completely false for baseline measures such as infant mortality, life expectancy, cost per capita, etc.
That is something we agree on because that is the accepted starting point of the discussion, not a refutation to anything I have written or proposed.
> But our system is hardly “better” than other developed nations on almost any objective measure.
Back to the black and white thinking.
It is better in several ways and yet I am not an advocate of it because it is not a free market so I might ask why you're responding to me as if I am an advocate of it, but that is black and white thinking in a nutshell so I won't.
The problem is how to get more and better healthcare to more people. Aside from the endless examples outside of healthcare, less regulated markets in healthcare have met these requirements. For example, cosmetic surgery and things like lasik, the quality has gone up, the costs have dropped, availability is widespread and even approach normal.
Yes, and healthcare is a good thing to regulate, you know, cause of all those pesky ethics and morals that get involved with human life.
brigandish 2 days ago | parent | on: Notes on My Chemotherapy
> Capitalism can't work its magic because healthcare is not a free market.
That's exactly my argument, regulatory capture precludes a market from being free.
> It has a unique set of constraints >> I fail to see how the points you list make it unique.
If you can't seen why healthcare a specifically constrained market, you're being either intentionally obtuse or incredibly naive.
> I live in Japan, I choose the hospital/clinic/doctor that I see, for everything.
Yeah, I choose my dentist, too dawg, doesn't mean that I can choose what E.R. I get dropped off at when I get in a car wreck. I can't shop around for prices on concussion doctors when I'm unconscious in a gurney. Don't be obtuse. Sure, emergency services are only a small part of the pie, but they're the ones that bankrupt people. No one went bankrupt getting their contacts done, and dental and vision are frequently separated _for the exact reason_ that they're not ever medical emergencies, and when they are, they send you to a specialist anyway.
> high barrier to entry >> For whom at with what?
This is starting to border on bad-faith. I'm not going to spell out every piece of my argument here. If you can't accept the premise that healthcare is a high barrier to entry market, then you're not familiar with the problem.
> constantly changing regulatory environment >> Yes, so deregulate and move towards a freer market.
You can't just deregulate things and hope it'll fix it. de-regulate _what_? You haven't even proposed a solution here, you've just yelled "Free market!" and "Deregulate healthcare!" But all that will do is worsen the quality that we see and encourage a bunch of snake oil companies to become even more common.
> The reason single payer systems work >> Do they?
Yes, the evidence says a resounding yes in basically every country, including the U.K., even when the NHS is underfunded. Like another poster pointed out, basically any base-line metric puts the U.S. in ranks with most third-world countries. It's embarrassing.
In a thread where I've already warned about black and white thinking we have this:
> Yes, and healthcare is a good thing to regulate, you know, cause of all those pesky ethics and morals that get involved with human life.
Since when does deregulation mean to remove all regulations and laws? Then we have this:
> you're being either intentionally obtuse or incredibly naive.
Aside from more of the inability to show basic respect we've already touched on, it's like a parody of black and white thinking with the invidious false dilemma, but it doesn't end there:
> Yes, the evidence says a resounding yes in basically every country, including the U.K., even when the NHS is underfunded. Like another poster pointed out, basically any base-line metric puts the U.S. in ranks with most third-world countries
Imagine turning a complex issue into this statement. It's not beyond parody but it's approaching that point.
> This is starting to border on bad-faith.
No, it's not. You continue about how you're unwilling to spell out your argument and then, further into your response, continue by saying that I'm "just yelling" without expanding on my points.
a) I'm not yelling. No one is yelling. Try not to react emotionally to those who disagree with you and/or project emotions onto them that they haven't at least alluded to.
b) If you're unwilling to state your argument clearly and succintly then it is hypocritical to accuse others of also not doing so (and you're incorrect anyway, so it's blatant hypocrisy).
> If you can't accept the premise that healthcare is a high barrier to entry market, then you're not familiar with the problem.
I'm not going to accept the premise until you state the reasoning behind the premise. Perhaps you react the way you have because you're unused to being challenged. If so, you shouldn't engage in discussion on the internet, and certainly not here.
Regardless, let's answer some of these from the absurd straw man you've perpetrated, and hopefuly, afterwards, you'll take some time to acknowledge the benefits of not reducing everything down to binary, childish imitations of an argument.
> > I live in Japan, I choose the hospital/clinic/doctor that I see, for everything.
> Yeah, I choose my dentist, too dawg, doesn't mean that I can choose what E.R.
I've already responded to the fatuous ER argument elsewhere, but if you'd done any research into Japan - where you claim single payer "works" without it being "embarrassing" - you'd know that the way ambulances are provided and hospitals are chosen in an emergency is embarrassing, but then you're clearly "not familiar with the problem".
I'd explain it to you myself but I'm not in a generous mood for some reason (note the allusion to an actual emotion I'm experiencing).
> You can't just deregulate things and hope it'll fix it
I'm not basing my ideas on hope but on reason and consideration.
> You haven't even proposed a solution here, you've just yelled "Free market!" and "Deregulate healthcare!"
The Socratic method would blow your mind. Regardless, I provided some explanation in the form of comparison in another comment.
> But all that will do is worsen the quality that we see
Perhap you could tell us, with regards to LASIK[1]:
a) Has the cost come down since FDA approval?
b) Has the quality gone down?
c) Is the availability greater now than then, and to what extent?
d) Has there been a lesser or greater number of unethical actions in the provision of LASIK than other, more regulated treatments?
e) Has there been a lesser or greater number of bothched treatments in the provision of LASIK than other, more regulated treatments?
You may pick the regulated treatment to compare with.
> Like another poster pointed out, basically any base-line metric puts the U.S. in ranks with most third-world countries. It's embarrassing.
What's embarrassing is not knowing the difference between the mean, mode and median (a look at the average salary of baseball teams is always good for this). This is why any analysis made should be multivariate and not black and white, or you end up with childish conclusions.
For analyses that take into account more than one measure, you get very different outcomes[2]:
> if you remove deaths from fatal injuries from the life expectancy tables? Among the 29 members of the OECD, the U.S. vaults from 19th place to…you guessed it…first. Japan, on the same adjustment, drops from first to ninth.
That's just one, small example. The article contains others and there's more out there. If you're able to respond in the way befitting of the vast majority of HNers then we could discuss those.
Then we can get on to why there are more doctors taking the R.O.A.D. path and why this might do well to be applied to things like surgery, and the actual OECD figures for the UK and US. They'll be highly instructive.
[1] https://www.webmd.com/eye-health/news/20191220/twenty-years-...
[2] https://www.forbes.com/sites/theapothecary/2011/11/23/the-my...
Instead, insurance wants to make sure that you really-super-duper-need
whatever it is they're going to give you, to the point where there's
basically no way they can say no.
And, then, when my company switched insurance providers at the beginning
of 2021, this nurse service stopped abruptly.
1. have to cover part of it in January when your deductible resets,
2. have to pay more toward it than you would when your plan invariably gets more expensive in January,
3. it will be some other insurer's responsibility by then,
4. you die before you incur any more treatment costs.
Truly sick stuff!
> The insurance company even assigned me a nurse to "check in on me" as a resource back in November and December, which sadly was more of a nuisance than anything else.
Sadly but at least that's all it was. These nurses will try to FUD you out of critical treatments, or "suggest you ask your doctor" if they're sure something is really covered. I nearly had a major treatment go seriously off the rails where I'd need to go to another hospital, before my doc's hospital was like, "wait, no, there's no problem, that's totally covered."
They spam you constantly on the phone too even once you're hip to their game. Stay away.
Another point is that our insurance systems are so needlessly complex that there is no single person or pair of people that understand what's actually going on. If the insurance is denying you get trapped in a continuous loop of appeals, approves, offices, pharmacies, prescribers, etc. and no one is able to tell you 1. Why they're denying you 2. What exactly you need to do to not fucking die.
Im sorry but the system had become both absurd and cruel. I keep trying to remind myself that 80 years ago they wouldn't have been able to save her if they tried. It's still better. But to see this carrot perpetually yanked further and further away from you as you slowly lose your ability to keep up or keep going. And then, as the last light dims from your eyes, to see someone sprinting the carrot back to you and attempting to help you as best they can even though you're nearly past the brink.
That is the story I've learned.
Our system does have success stories. It is better than nothing. But any system that has the capacity for such inhumane cruelty in the face (in spite) of genuine humans trying to help sets a dangerous precedent for the future of its society.
It isn't even about the money, I could afford the $3k out of pocket too, it's more about not having to be a "customer" who has to frequently make choices or shop around.
It's also a relief not having to think about the money or insurers. I don't need to collect receipts or bills or phone insurers or providers, I can focus 100% on getting through my chemo.
I haven't had to fill in a single form except the occassional consent form since diagnosis, and to me that's worth every penny of tax I've ever spent.
We also have private health insurance, 30-40 percent of the population take that up.
When you go public you will need to wait in a longer line, you won't get the flowers next to your bed and you might need to ring for a bit longer for a nurse to come, but you'll often be seeing the same doctor you would have seen going private.
Last time I was in hospital the only paperwork was the admission form, and then telling the desk people my insurance number as I left.
The diagnosis took way longer, in the US I'd have likely been diagnosed months earlier.
However, I was diagnosed on a Thursday, started steroid treatments by Monday in preparation for starting full treatment a few days later, and also went from an PET/CT scan to having radiotherapy just 3 days later.
I'd be wary of looking too deeply into survival statistics, especially since the much greater emphasis on diagnosis means that a lot of the cancers treated in the US are an earlier stage which is reflected in the survival statistics.
It's also important to consider that there aren't people made homeless through medical debt in the UK. There aren't people who avoid going to the doctor because they feel they can't afford it (regardless or whether they could with the appropriate allowances etc).
It's not a "religion", it's just experience of 70 years of fully public healthcare which is reflected in things like our vaccine rollout which when compared to our neighbours we have been miles ahead.
Even those countries with socialised healthcare but private provision (public insurance + private provision) have massively lagged behind because having a single provider of healthcare has been monumental in coordinating a massive vaccination effort, and as a result the UK is almost top of the per capita vaccination rate with only the much smaller Israel and Bahrain above it.
But again, I can't stress how good it is that I don't have to worry about my wallet when getting treated.
I was able to change jobs even while undergoing treatment because I didn't have to worry about losing access to health insurance. I may be wrong but if I were working the US I'd feel trapped in my previous job because I'd have been worried about not being covered for a time.
The TLDR is that I value living in a society where the poorest and the middle class both have access to the same healthcare. (And yes, like other countries we also do have a private healthcare industry, which is popular especially for elective stuff.)
https://fullfact.org/health/which-safer-us-hospital-or-engli...
I think it's hard to compare the two health systems purely on their data as there is a culture of healthcare that it is difficult to factor in.
E.g. how many people don't go to hospital and then die in the US because they cannot afford healthcare? I witnessed this first hand in New York when somebody was knocked out and as I was dialling 911 they woke up and shouted not to call an ambulance because they couldn't afford the cost.
Equally, understand that the NHS does not have the funding that the US healthcare system and that wait times are generally longer.
etc etc...
This means Americans are paying lots of money for treatment that lowers quality of life, can have serious side effects and unintended consequences, and which is mostly not allowing them to live longer.
I know which I prefer.
Powerful ending to the article... indeed, fuck cancer.
Get well soon, stay well!
All of the view alerts, the notifications, reminders, people involved in your care, fancy computer systems, read backs, none of that prevented the potential delay in your treatment. It could have been months before someone noticed and said "hey, we should probably get you into treatment."
In my experience, outcomes are determined by how much you are willing to manage your own care and, importantly, fight when necessary.
1) Write down everything that happens. Who came in when, what they gave you, how much, what you talked about and when, etc. Our personal experience is that the MDs and nurses take much better care of you when they see that you are taking notes. Not only from a fear of lawsuits aspect (though if that is there, get a new practitioner quickly), but also from a respect angle. That and they do make mistakes, sometimes big ones, and having another record is invaluable when it comes to when a dosage was given. The taking of notes also tends to slow things down, which can be good when trying to understand complex issues or figure things out.
2) If you're in for a while, get a bowl and keep it filled with diverse candies. Practitioners stop by more often, tend to hang around longer, and are generally in a better mood. All of which leads to better outcomes, at least that I have personally seen. Though this is pre-covid advice.
And yes, I very much agree, you have to fight hard to get the care you need. Be polite, of course, but do not back down with MDs, they tend to think of it as a weakness to exploit for some strange reason.
To this I will add, if there's an outstanding health issue, even if it seems minor, address it without delay. Pound the phones, demand specialist referrals, and for the love of god don't engage in avoidant behavior or optimism bias.
Timely diagnosis can be a difference between life and death.
I just went through this (with a different cancer). I didn't blog about it like this, but I shared some on Facebook and that seemed to help me and the people around me a lot.
Charlie is the guy who wrote that awesome article about finding a working Apple II in some neighbor's garbage, asking for it and getting it to work. I still have it bookmarked. He inspired me to get a C64 (ok, I'm not a Real Programmer like him, so I got an emulator in a case that looks like a C64).
I wish him the best of luck. I hope he beats this cancer.
Yes, I love the look of that Raspberry and of course I want one. Do I need one? Of course not, but it would make me happy.
After booting up my fake C64 and playing a few games for nostalgia's sake, I'm still struggling to find the time to learn some assembly language for it as I had planned.
Did you ever find the time to do something with your Apple II? If so, you should really write about it. I really, really liked your blog post, I must have read it at least three times!
- Not all ports are metal. Some are plastic.
- Not all chemo drugs have the same side effects; even within drugs, not all implementations have the same ingredients.
- Lots of chemo retrospectives talk about "nausea", but that's imprecise. Nausea and vomiting are separate things, and can be invoked separately. Some chemo drugs act on the vestibular system, which is the part of the nervous system that decides whether the body needs to vomit; some chemo drugs in your blood basically yell "PUKE PUKE PUKE" at your brain, and you vomit without nausea. Other chemo drugs do a number on dopamine or serotonin receptors, giving you intense nausea without the trigger to puke (but you might anyway). You can tell if you're in the latter bucket if chemo makes you absolutely hate chocolate, turkey, or other tryptophan- and tryamine-heavy foods — without the serotonin/dopamine boost in most chocolate, it's just a weird bitter taint that ruins sweet flavors. (Also, some chemo drugs make you REALLY crave fructose. By the bucket. Fruits, fruit-flavored candies, fruit juice, non-stop.)
- If you're young and relatively healthy, there's a decent chance you'll deal with your port closing up, especially if your cycles are 3+ weeks in length. Flushing the port is time-consuming; chemo is already hard to schedule around, but if you have port issues, nothing is ever going to take just 2-4 hours.
- Not sure if Charlie had to deal with pre-meds and post-med flush drips, but we did, and they're mandatory — even if you're unable to finish the infusion.
- Some chemo drugs have a slim chance of causing a severe reaction. If you're going to have one, it'll be within the first 10 minutes of the first infusion. If you have one, it might be a classic sudden allergic reaction, in our case Taxol caused the throat to close up, losing the ability to speak or breathe, treated with a heavy dose of Benadryl. Regardless of the specific reaction, if it's severe then it's a massive problem going forward, because your options are to either ditch the oncologist's first-choice drug or (with a ton of suffering) try to build up a resistance in a hurry. And yeah, if you're unlucky enough to have that reaction, you're very likely going to have that violent reaction in front of an audience of everyone else getting an infusion.
- One of the side-effects of chemo isn't listed here, and might not be a factor in his combo, but in general chemo has an eventual side effect point where it can't continue: the potential to cause nerve damage. This will look or feel a little like Parkinson's, with numb extremities, loss of motor functions, difficulty stringing together words/actions. At the first, slightest sign of this, chemo is over, sometimes for good. If the cancer isn't getting treated by then... good luck.
- Holding off on a cycle due to low white blood cell counts is a foreign concept to me. They ran tests and infusions between cycles to keep WBC counts up, but any cycle delays were considered suicidal. Again, might've been just our treatment course (and severity; we started at stage 4).
- This will vary between infusion centers, but as long as COVID is a problem, you can't rely on having in-person company with you, or contact with other people getting infusions (on account of everyone involved having massive immunity problems from the chemo). If you crave contact, bring a phone, a charger, and the longest possible cable you can get for that charger.
- If you're going to do chemo and nobody recommends a port, ask about them...particularly if you are a tough stick. What used to be 5-15 minutes of agony and stress that would regularly involve bringing in the good hands team with the ultrasound kit turned into basically nothing. Ports can be used for labs as well fwiw.
- If you are a tough stick and don't get a port, don't be afraid to ask for the ultrasound.
- If you're inpatient for some reason and your chemo appointment is getting close, begin asking your doc and the attending about it ahead of time. Some hospitals will do an infusion in your room, some won't...and in those cases you might just miss a dose.
- If you regularly need saline to keep up hydration there are in-home nursing facilities that can do this rather than having to go to the hospital every time. They can teach you to 'de-access' the port as well, so that they don't have to hang around for the hour to get through the bag.
- Emesis bags are available on Amazon by the case.
- If margins are starting to thin, make sure that there is regular bloodwork being done that covers iron, liver function and other diagnostics that are relevant to your situation. Some of these things are slow-movers and can interfere with your treatment plan when they get out of whack. Most of these are available without a referral/prescription from a local hospital or lab.
- If you end up with a hysterectomy or because of your treatment have hot/cold issues in bed, the BedJet is absolutely amazing. https://bedjet.com/
> make sure that there is regular bloodwork being done that covers iron
We've been fighting anemia during treatment, and regular tests have resulted in blood transfusions that kept us on schedule and ultrasound scans to locate and treat the blood loss.
I don't know if your username came from this road you're on but it is absolutely appropriate for it. I wish the best for your and your loved ones.
My cousin was a registered nurse and she came to help with my mother's care. One night my mother had a crisis, and we took her to the emergency room. Just by chance the admitting physician had been an oncologist, and she said that sometimes chemotherapy damages the lining of the stomach. The doctor admitted my mother and ordered a nuclear medicine scan. The scan showed that the problem wasn't exactly what the doctor thought it might be, but it was very similar, and if could be treated with oral medications. They started her on the medications, and the very next day she ate a full meal without any vomiting.
Unfortunately, when she was transferred from the emergency services department to a regular ward, the changes to her chart didn't make the trip with her. They stopped giving her the new medication and resumed the powerful anti-nausea medicine she had been taking before. With the help of my cousin (the RN) we discovered the mistake a couple of days later, but it was too late. Her body had suffered too much, and she died a few days later.
We're two months past the end of chemo and now at the end of a trial that also failed. The vomiting has been worse, if anything, since chemo (and the anti-nausea meds they prescribed) stopped, but it's been due to chronic constipation for us.
What kind of care will hospitals provide?
At the end of the day though, there are many that fall through the cracks of our healthcare system. And that sucks.
Over 60% of bankruptcies are medical related.
Someone I know recently had cancer in Australia, they are wealthy but don't have private health insurance: so they went through the public system. It seemed like they got care that was just as good to be honest. Just not a private room.
I'm not saying that navigating the system is easy or straightforward. But there are options out there.
And bankruptcy laws vary by state, but typically they can't take your home, vehicles or your retirement savings.
- non-hodgkin's lymphoma
- pulmonary blood clots
- a section of her abdomen the size of a loaf of bread went necrotic after a suture migrated and pierced her intestines.
- heart failure leading to constant oxygen
- breast cancer
and there's probably something else I'm forgetting. She was a deadbeat who managed to work about 6 months of her life. None of her major health problems started until after 40. She was a welfare mom who married a guy with a meth habit who worked at an automotive parts counter making peanuts. At no point was she ever denied care. She even spent around 6 months in the ICU at University of California Irvine and had amazing reconstructive surgery for the necrotic tissue. Of course she ate her way back to morbid obesity after getting a new lease on life.
The US health care system seems to cause more issues for people with a little wealth, because it will happily take it all away. For people with nothing, in my personal experience, you can get great care.
If that's not an option, many hospital provide charity care.
Maybe there are trials ongoing to prevent relapses in some higher tech sort of way.
Best of luck.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2687140/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085345/
Unfortunately, it causes acute hepatitis and it won't be authorized for clinical trials.