Looking for honest advice.

[Myrrh_Quetz]

Damn, Canada healthcare is weird as fuck. I didn't realize you lived there. I have no idea how that operates. And you're allowed to record medical staff? That's wild. Anyway, needing to see psych outpatient on a regular basis should be a priority. They should be able to help with the PTSD, sleep, nightmares, and chemobrain issues.

I was basically forced into having to record my visits with certain medical professionals. A lot of my stress at the start of cancer came from nurses, health care aids, and Doctors doing/saying something awful and when I went to complain, it became a he said/she said thing and things like patient advocacy would side with the hospital staff.

That’s what I’m trying to do. Again. Energy and pain are the biggest issues for me. Well, that, and the fact they only have like 7-9am appointments. To a normal person, that’s nothing. But my wife and I are up to about 2-4am every night because she does Home IV and requires my help with it.

Actually, if Banethebrawler reads this. My wife is off food and does home TPN 5 days a week now. Ontop of that, she has several IV antibiotics that are also done every night. Basically, we are both shockingly levels of fucked up and are just going 1 day at a time.

[kuronosan]

The first question I have is pain related. Does anyone have any tips to help with the random bouts of pain I get.

There's a couple of things you can do. The most obvious is NSAIDs to cover the pain, or things like Xanaflex for muscle cramps. Sometimes people report good results with gel-based therapeutic creams. A pain management therapist can also be a boon, as much of the pain can be tied to psychological processes.

This one is a tough one. Its the severe lack of Energy due to pain and not sleeping. Since I'm in remission and since there is always a drug crisis going on, my pain docs want me off painkillers as soon as possible so far that i'm on child doses of everything, which is really fucking annoying.

What kind of painkillers are you on? Opioids? Because them no bueno for most types of pain (especially in the long-term). There are tied benefits to things like Remeron or Melatonin for sleep and in some cases pain.

I constantly use a heating pad/Ice pack but those don't seem to help. And another reason for the lack of sleep is the constant nightmares I keep having(I dream my cancer came back, I died, and left my wife a Widow, then the dream follows her story after I'm gone. Not your typical nightmares).

Talk to a psychiatrist and see about possibly getting prazosin for nightmares related to PTSD.

That's also worrying me some cause I WANT to get back to work. Any suggestions there?

I agree with Tyche. I think you should consider seeing a therapist. Many of your problems stem from psychological stress as a result of your cancer, and I'm sorry you've had to go through that.

You have nothing to apologize for, but I encourage you (as a budding psychiatrist myself) to go see one immediately just for the sake of your mental health.

[Silenka]

Haven't talked about this much on the internets, but I'm currently taking CBD oil to deal with my chemo for stage 4 ovarian cancer. Just had my 3rd round out of 6. For about a week after each round, I feel weak and the surgical sites where they hacked out the tumors can hurt and twinge. I don't like taking pills if I don't have to, but my nurse recommended CBD oil and my doctor is very on board with marijuana products. For me, CBD definitely helps with the pain, neuropathy and weakness involved with chemo, but ymmv as to how it affects you personally. For me, it helps a lot, and I've heard others say it helps them too. I'm currently getting mine from Sunsoil, which is way cheaper than buying it locally. The few times I've taken THC I haven't liked what it does to me - I think I have bad reactions to it sadly - but it's said it's more helpful to take a "whole plant" mix of THC/CBD. I have no idea if this is actually true or not.

My dad also had lymphoma, in which they did no surgery but only gave him chemo. His doctors told him "if you're going to get cancer, lymphoma is the one to get" because it's relatively easier to get rid of with chemo than many others, I guess? He's been free of it 5+ years now after 6 rounds of chemo and radiation therapies. However, his blood cell counts are still low, and I anticipate mine will probably be too after chemo, though I'm younger than he is so idk. There is a shot you can get called Nulasta that forces your bones to produce more cells, but can cause bone pain. He had it and I might have to have it too. I don't know if doctors are into administering that shot after chemo, but they often order it during for patients who need a boost just to take their next chemo (which might be what I'm looking at next round).

Sorry I can't help very much with your specific problems, but you're definitely not alone with the worries about the future.

[Myrrh_Quetz]

Haven't talked about this much on the internets, but I'm currently taking CBD oil to deal with my chemo for stage 4 ovarian cancer. Just had my 3rd round out of 6. For about a week after each round, I feel weak and the surgical sites where they hacked out the tumors can hurt and twinge. I don't like taking pills if I don't have to, but my nurse recommended CBD oil and my doctor is very on board with marijuana products. For me, CBD definitely helps with the pain, neuropathy and weakness involved with chemo, but ymmv as to how it affects you personally. For me, it helps a lot, and I've heard others say it helps them too. I'm currently getting mine from Sunsoil, which is way cheaper than buying it locally. The few times I've taken THC I haven't liked what it does to me - I think I have bad reactions to it sadly - but it's said it's more helpful to take a "whole plant" mix of THC/CBD. I have no idea if this is actually true or not.

My dad also had lymphoma, in which they did no surgery but only gave him chemo. His doctors told him "if you're going to get cancer, lymphoma is the one to get" because it's relatively easier to get rid of with chemo than many others, I guess? He's been free of it 5+ years now after 6 rounds of chemo and radiation therapies. However, his blood cell counts are still low, and I anticipate mine will probably be too after chemo, though I'm younger than he is so idk. There is a shot you can get called Nulasta that forces your bones to produce more cells, but can cause bone pain. He had it and I might have to have it too. I don't know if doctors are into administering that shot after chemo, but they often order it during for patients who need a boost just to take their next chemo (which might be what I'm looking at next round).

Sorry I can't help very much with your specific problems, but you're definitely not alone with the worries about the future.

I’m sorry you’re currently going through that and that your dad went through Lymphoma. I can’t say about your dad but my Lymphoma was a side effect of transplant. “Post Transplant Lymphoma” is what I believe it was called.

And your post is exactly what I was hoping would reply to this post. You have personal experience on two levels, so thank you very much for posting. What form of CBD are you currently taking? I’ve done edibles, those Phoenix tears, and CBD bath bombs(which are actually really amazing. You get a killer body high). As for how it affects me. It helps with the pain a little bit but I find it makes me retardedly groggy. Like, itll knock me on my ass for a whole day and then some.

I was on RCHOP for my chemo and I did take a daily shot for a week after each chemo to help raise my white blood cell count. Would you happen to know of the things your father did to help him “get back to normal”(so to speak)?

[Silenka]

I'm taking the mint chocolate tincture from Sunsoil I linked in my last post. The absorbency is supposed to be the best and fastest (bio-availability) through taking a tincture under the tongue. Currently taking just 5 - 10 mg or so twice a day, nothing crazy. I also had some hard candies with 15mg per candy from somewhere else, but they are pretty nasty tasting lol. Still worked, though. I haven't tried anything special outside of that. I've never heard of CBD alone making anyone groggy, because it doesn't have any psychoactive THC components in it if done right. I will say that the few times I took THC, it did make me groggy and my vision blurry so I don't take that anymore. CBD-only. (Lots of products are THC | CBD and not CBD only so maybe that was your problem?)

I heard of a THC product called Rick Simpson oil that is supposed to be really good for pain specifically, some people down at the dispensaries will swear by it, but I never tried it myself.

My dad didn't do anything special to recover, just drank more water and tried to cut excess sugar out of his diet. He reacted very well to the chemo overall and worked his full time job the entire time (which is crazy). My mom is convinced that gluten is a strong contributor to brain fog so perhaps you could try removing that from your diet for a week or two and see if it helps? Sorry I don't have any other good advice, except to take everything a day or even an hour at a time and do what you need to take care of yourself, even if it's just sleeping more.

[Myrrh_Quetz]

worked his full time job the entire time (which is crazy).

Jesus christ!

[Myrrh_Quetz]

Oh and just to explain to people. My cancer was not caught at any reasonable time frame. By the time it was caught, I was literally being ripped apart from the inside by my Lymphnodes. The pain and muscle cramps that happen are a direct cause of that. That’s 100% certain.

And while I greatly appreciate the advice. With the current “drug seeking behaviour” that is littered in my medical. I think me asking for specific drugs would do more damage than good. I’m a 31 year old white male. That’s all they see. It’s something I’ve been dealing with since I first broke my back 8 years ago and was told for weeks “Nothing is wrong with your back. That’s addiction to T3s(YEAH RIGHT) talking”

I will be seeing the proper therapist when I’m able to, it’s just not something I can predict.


Like, my body was fucked up before all this. I had suffered brain damage when I broke my spine, dont forget about Cystic fibrosis, the fact that I died twice, and was in a coma, and a whole host of other shit. If I wasn’t a medical journal waiting to happen, I’m sure most, if not all the advice given here would work.

And it could be THC that makes me super groggy. I tried nabalone and hated that shit. I’ll be fully honest again. I miss Ketamine.

[Tyche]

Again. You don't need a therapist. Well, you probably need a therapist. But a therapist can not prescribe the medications you need to treat the sleep, nightmares, PTSD, and chemobrain issues you're detailing. You need a psychiatrist or the equivalent midlevel provider. You don't have to ask for specific medications. Your afflictions aren't particularly unique, though your circumstances may be, and there are common meds that are prescribed to treat those. You don't need to ask for them. They'll know.

And as an aside, this may offend you, it's very frustrating as a provider to read excuses about seeing psychiatry (hard to find because the bad days outweigh the good days, they've treated me poorly previously, etc) while also reading the exchanges regarding alternative therapies, thc, etc. It gives the sense that your priorities in care may not be reflective of what would be best for you. I'm saying that as someone who isn't your doctor, knows your circumstances strictly from this post...but from a distance, I am getting that vibe. And if you talk like this to your doctor's, while recording them, it may explain your relationship with them. When you start with that distrust, it makes meaningful patient/provider relationships very difficult. If I walk into a room of a new patient I have never met and they are recording me and the reason they tell me theyre doing so is because they've had so many bad experiences, fairly or not, that behavior is going to elicit a negative response toward you. And I think most providers would feel the same way. You've never met me and you're not giving me a fair shake. I'm probably not going to give you the benefit of the doubt either. There's so much weird shit here that I don't know if it's Canada related or what, but your care in general seems like a really bad string of terrible relationships with your providers.

[Silenka]

There's so much weird shit here that I don't know if it's Canada related or what, but your care in general seems like a really bad string of terrible relationships with your providers.

This is what I was thinking too (on the opposite side of things). I cannot imagine being treated the way you were by doctors in the US. Oh sure maybe once or twice it could happen with the wrong doc/nurse, but definitely not over and over again. If I had the medical history you have I'm 90% sure whoever was taking care of me would be letting me try / giving me anything I want. I mentioned before that I don't like taking pills. My docs all look at me like I have two heads when I don't use the opioid/pain meds they prescribe me post surgery (even if I honestly don't need them). And they've straight up asked which ones I want before. It might be worth looking into alternatives such as care in the US if you can get it. It boggles the mind that people who just want a stupid high are getting pain meds while people who legitimately need them for actual pain are being turned away.

And as far as if I felt there was something really wrong with me, you can bet they wouldn't have been able to ignore me while I was kicking down their doors at the hospital.

[Tyche]

A good chunk of reimbursement for Medicare/caid is based on quality. And how that quality is measured is somewhat determined by patient reporting. When you get a call after a hospital or doctor's visit asking "would you describe your communication with the doctor as very poor, poor, good, or excellent", that data is used to determine the reimbursement rates for providers. So how much we get paid is directly affected by how happy you are as a consumer. That's part of the quality of quantity guidelines put together years back. Even without that carrot hanging from the stick, most people in medicine work in medicine because they genuinely care, and typically aren't assholes. Canada doesn't have that carrot I presume, but I don't know.

[Myrrh_Quetz]

Okay, where to start.

First and foremost. I am in a completely different country and have a vastly different healthcare system than you have in then states. Doctors are not monitored on bedside manner AT ALL. That’s one of things. If you get an asshole doctor, you’re basically stuck with them. Canada is a one party consent for recording. So during any doctor/nurse visit, I never mention or have to mention that I am recording them.

Second. If I come off as rude, irritated, or an asshole here, that’s me expressing annoyance after the fact. When I’m with Doctors/Nurses, I basically act like a scared child who risks getting hit if they say something wrong. There is currently a MASSIVE opioid crisis going on here and doctors are basically unwilling to give out pain meds, even if required. If I get pissy with any of them, I risk being cut off completely and from a legal standpoint, they can do that without issues. Again, let’s use a quick story to explain my point.

At the start of cancer before I knew it was cancer, I was in horrible pain but I wanted answers for what was causing it more than I wanted pain killers. So after that stuff that happened with my Transplant team, I went to a local ER. At triage. I never once asked for pain meds. I said something is wrong with my lower abdomen and probably need a CT. They get me to a room, a Doctor comes in and before anything I’d even asked she says “So, I see you’re on Hydromophone and lorazepam!” I was like “ah, yeah, I have a broken back and I’ve been having panic attacks lately”. Her only questions from then on were related to me wanting pain killers when I never asked for any as I still had my own supply. After some time, ANOTHER Doctor walks in and does the very same thing. It took nearly 13 hours in an empty ER before they even considered sending me for a test and the first test was an ultrasound of my balls.

You have to remember. Canada and the US might be neighbours but we are vastly different countries.

And now, when I said “therapist”, I meant the psych one, that’s my bad for not using th proper term. And I have no issues, personally seeing them but when I talk about energy being so piss poor. I’ve even called and cancelled appointments for massages that I paid for beforehand. This isn’t a matter of “oh if I see them then that’s admitting weakness” or whatever.

And here’s another example of a pain clinic story. I was seeing them for years and they’ve always treated me poorly. For one whole year, I was seeing them every two weeks and every two weeks, for an entire year, I was “Randomly” drug tested. After about a few months, I went to patient advocacy and explained to them how I feel and how poorly they’re treating me. Patient advocacy then went and “talked” to pain clinic where the abuse only got worse and I was constantly threaten with being cut off and kicked out. I’ve told that story to a friend who happened to work in IT and worked on their computers. He called me out and called me a liar saying “they’re some of the nicest people I’ve ever met”. Then his wife needed to see them for a medical reason. The next time I saw him after that. He deeply apologized to me and then said “I should have listened”

And you might be thinking “if it’s true, then why don’t you go to the news or press charges”, do you want to know why? I am a horribly and chronically ill person. What do you think happens to a patient who cries to the Media or attempts to sue? I blacklist myself from every doctor. Doesn’t matter if I’m in the right or in the wrong. Again, this isn’t the states.

I have never and will never give attitude to doctors. I will never risk my personal safety over potential bias. I’ve seen it happen. And until you’ve been chronically ill like myself or Bane, or any other person on here, you don’t truly realize how small you are and how easy it is to be told no. You are 100% powerless. You cannot demand anything here. Again. CANADA.

I would love for nothing more than to all those doctors and nurses to go fuck themselves, believe me.


Getting medical care from the states is a good idea, however, that costs money. Either insurance or upfront. My wife and are what some would call “uninsurable”. No company would ever risk us. We have pre existing, post existing, and probably 100 other words they’d use.

You guys can say I’m just making excuses but I wish that was the truth, I really do. Look, I’m a loud mouth idiot who has done nothing but bitch and moan on this website for years about my medical troubles. I didn’t (and still pretty much don’t) have the energy to even read posts on here. I disappeared for nearly a year.


I went from asking for advice from others who have potentially been through cancer(which I did get) and now I feel like being attacked and have to defend myself for expressing how I am. It’s easy to be healthy and just assume but I seriously am unable to get up, walk 20 feet, sit in a chair, and play video games. I appreciate the advice and suggestions, I honestly and truly do but sadly some things just aren’t simple fixes. I’m only 8 months out cancer and chemo.

[Richybear]

Not trying to derail, but assuming Ontario?

[Myrrh_Quetz]

Not trying to derail, but assuming Ontario?

Worse. Manitoba.

[Tyche]

If you feel like youre being attacked, that's an issue. It isn't personal. I've offered advice and tried to explain things from a medical standpoint. I think this is especially important because communication seems to be a massive barrier in your care and you feeling attacked and singled out seems to be a result of that barrier. Take your comments about random drug testing for instance. That's not you being singled out or attacked. That's standard of practice in pain clinics and when patients are on narcotics. I'm randomly drug tested because I'm on stimulants (at $108 each test). Pain clinics not only randomly drug test, but they are so strict that if a patient is admitted to the hospital and prescribed pain meds in the hospital, they can be kicked out of the pain clinic for breaking their contract. Pain clinics are notoriously strict, because as you said, opioid abuse is a real issue. This isn't a Canada or US issue. It's a standard of practice issue fortified by piles and piles of evidenced based practice and research. I don't think anyone did a very good job of explaining that to you. So I say that to tell you, again, I'm not attacking you. I'm explaining why some of the things you feel are personal and targeting aren't personal nor targeting. I'm trying to communicate. And if you shut out that communication by saying you're being attacked, your care, especially when you decide to seek psychiatric treatment where the provider/patient relationship is absolutely vital to well-being, will suffer.

[kuronosan]

My honest opinion as someone who will be practicing next year is to listen to Tyche.

[zoobernut]

I am not sure about all the other stuff in this thread nor am I sure how your body will react to having cancer after all the other health issues you have however that being said I can say that it can take time for your body to recover from chemo treatments. My mom just got done with her second round of chemo. Her first was six years ago. In both cases the neuropathy and other symptoms cleared up in a couple of months within stopping chemo. Some of the neuropathy didn't really go away but that was mostly mild numbness in extremities.

Chemo brain fog seems to go away more quickly like in a month or so. This is all based on my personal observations. Chemo is really tough on the body. The other thing is that it has a lot of variation in how you react to it. The side effects and the parts of the body effected most changed quite a bit between treatments six years ago and the ones that just happened. I am guessing that there is a fair variation in that per person too as well as variation based on what chemo medicines are actually being used. Not only that but the other medications given in conjunction with the chemo can cause even more severe immediate side effects, how fast they administer the antihistamines and the steroids and what kinds they use will make a big difference in how you feel. Though the effects of those are more severe they wear off a lot faster.

Edit: Things that helped my mom were extra exercise mostly walks/short hikes. Lots of hydration, watching funny movies, doing chores or other activities to get the mind off of the body. She treated exercise, hydration, and eating food like medicine something that had to be done.

[Tyche]

I should apologize. For us that are in healthcare, I think we do a poor job of understanding our patient’s lack of understanding. I could absolutely see how one would be completely offended by being required to take a drug screen. For us, we order these tests several times a day. We do a poor job of visualizing the optics through the eyes of someone like Myrrh. What we providers may see as standard of care may look very different to someone receiving that care. Like, when I said “your situation isn’t unique” may be interpreted as me being dismissive of your concerns when in reality, I just mean that we see these patients and these concerns a lot. I can’t tell you how many times I’ve gone into a room and just casually told a patient “well, the MRI showed pretty severe stenosis at the L3-L4 level, and that correlates with the sharp pains and tingling you have in your left leg, you’ll probably need surgery”. For many patients, that’s life altering, and I would just drop the news like they should have known that this is what we were gonna do. This is what we do everyday (which we did), and that it’s not a big deal. So for that, I apologize for normalizing what you’re going through. I shouldn’t do that. But the clinical course isn’t really changed. If you have any specific questions about some of the shit you’re going through, I’ll be happy to answer them. Best of luck.

[Myrrh_Quetz]

I am not sure about all the other stuff in this thread nor am I sure how your body will react to having cancer after all the other health issues you have however that being said I can say that it can take time for your body to recover from chemo treatments. My mom just got done with her second round of chemo. Her first was six years ago. In both cases the neuropathy and other symptoms cleared up in a couple of months within stopping chemo. Some of the neuropathy didn't really go away but that was mostly mild numbness in extremities.

Chemo brain fog seems to go away more quickly like in a month or so. This is all based on my personal observations. Chemo is really tough on the body. The other thing is that it has a lot of variation in how you react to it. The side effects and the parts of the body effected most changed quite a bit between treatments six years ago and the ones that just happened. I am guessing that there is a fair variation in that per person too as well as variation based on what chemo medicines are actually being used. Not only that but the other medications given in conjunction with the chemo can cause even more severe immediate side effects, how fast they administer the antihistamines and the steroids and what kinds they use will make a big difference in how you feel. Though the effects of those are more severe they wear off a lot faster.

Edit: Things that helped my mom were extra exercise mostly walks/short hikes. Lots of hydration, watching funny movies, doing chores or other activities to get the mind off of the body. She treated exercise, hydration, and eating food like medicine something that had to be done.

Thank you. This is really helpful. My biggest issue though seems to be the chemo brain. I try to work the mind when I can but it honestly seems to be getting worse as time goes on. I don’t know if it’s just a weird slow recovery or because all my other dumb medical shit has made me spacey and this is just tipping the scale. That’s a really good idea, though. Treating normal life like a medical treatment would help me do things more easily.


And Tyche, I’mma just say this. I’ve been sick since the day I was born. I’m used to medical tests more than most, even you. And my wife is a registered nurse with a chronic illness too. However, since you didn’t seem to read or understand what I said. I’ll say it again. I was not randomly drug tested once or twice. I was “RANDOMLY” drug tested every two weeks for nearly 7 months with ZERO background or history of drug abuse and accused of taking “street drugs”. There is nothing “normal” about that. I’d also maybe recommend you read those few blog posts about the start of my cancer and you can get an understanding of why I speak the way I do and feel the way I do. And again, I will be seeing the psychologist/proper therapist. I have never stated that I won’t. I openly admit to being a fucking mess mentally and I know I need to be numerous drugs to help deal with this PTSD I have, aswell as severe survivors guilt, among other things.

[Tyche]

I mean, c'mon. I'm done here. I tried to extend an olive branch to you. I've been working in healthcare for nearly half your life. Nothing irks me more than when a patient tells me "I've been in hospital so for long, I probably know more than you". Ok man. Sure. I had a non-compliant diabetic grandfather live with me for my first 18 years of life. I was in and out of the hospital weekly. I didn't know what I didn't know. I spent 4 years studying to be a nurse, worked as a nurse for a decade, grad school for another 3 years for a doctorate and to become a provider. Found that as a nurse with multiple certifications in critical care and neurology, I didn't know what I didn't know. Your healthcare isn't a dick measuring contest. Patients may be used to getting tests, but knowing and understanding tests, pathophysiology, evidenced based practice, and hell, even simple medical terminology is different. You still can't separate psychologist and psychiatrist, although I've tried to correct you. And again, random drug testing in pain clinics and people on narcotics is normal. I've been doing random UDSs for 3 years. Three. With no history of drug abuse, working in healthcare, and as someone who personally knows the damn provider ordering the tests. It. Isn't. Personal. It's used to both ensure compliance and to reduce the risk of polypharmacy, which is especially important in cases such as yours. Your health sucks dude. I won't pretend it doesn't. On a personal level, I may never empathize with what you're going through or what you've went through. But your understanding of your care or lack thereof is doing nothing to help you and your distrust of providers is only going to further build barriers to your well-being. Over the last two pages, I have gathered that nothing I really say is gonna change your outlook. So I'll just again say goodluck. I hope you get better.

[kuronosan]

I can speak to the experience of providers labeling patients as drug-seekers, and it's an unfortunate side effect of the system and how people perceive psychological health as a function of pain. Pain is difficult to understand, which is why the only advice I'm going to give you is to consider going to a pain management doctor (preferably somebody who is cross-trained in psychiatry) and get them to help you.

What I can say beyond that? You are the patient. You know more about your body than any of us.

You do not know more about your health.