I've hit my limit.

Jadedjo · September 2018

And then to top it off I got a plastic surgeon who sends mixed messages.

Today I was told I can't go smaller like I wanted even though last time he told me I could. when I mentioned the antibiotics issue he said straight out "better get used to a liquid diet then" last time I can thisclose to slitting my wrists because I couldn't take the suffering I was going through with the heavy nausea and an inability to swallow anything more then water and almond milk. Now add surgery recovery to that. I was told that doctors are supposed to try and ease your suffering not make it worse but that's what I got here.none of my concerns where taken seriously they were either ignored or something like this. Nobody is even considering alternatives so I'm not suffering more then I have to.

Basically the attitude is "tough s%#*,we don't care".if I am lucky I will have little reaction to the antibiotics but I have never been lucky the fact I am in this community is one of the many proofs of that.

This was a bad road that has turned into a complete non stop nightmare for me and this is just the surgery portion. Ive already mostly decided I'm not doing anymore treatment because I'm barely going to be able to get through this 1st one.im not going to be sick a few weeks with the symptoms I described it's going to be MONTHS and then they possibly want to do chemo which is going to aggravate it even more.No freaking way.

ETA: yep entered my postal code, only services available are support groups available in another town and hospice care for financial.

As for transportation it's the same one I called that has the fee.

AliceBastable · September 2018

Is there a group on BCO for Canadians? Would you possibly get better advice for navigating your health care system from other Canadians? The systems are so different in the U.S. and Canada. I'm sorry how I worded the previous comment, but it's hard seeing every suggestion given to you (by several members) met with negativity and defeat. Some of us have our own health and other issues that we're trying to get beyond in an effort to reach out to you and others asking for help.

Jadedjo · September 2018

I'm doing the best I can with what I have been given and people making assumptions that I haven't is a slap in the face.

I appreciate the suggestions and links and have tried them. They haven't worked out for me.maybe if I lived someplace else.

You know what never mind I will be deleting everything.i don't know why I bothered to stay here.

Guilting me didn't help either. I am well aware other people here have their own roads. I wish them the best of luck on it cause we all need the most luck we can get. I'm so damned sorry that my luck seems to be so bad that you think I'm spitting in your faces.

I'll deal with this the way I've dealt with everything. Alone.

Thank you to all.

I have deleted my posts on this thread. Forget I ever said anything in it.

Jadedjo · September 2018

Forget I said anything. I deleted the majority of the posts here.

hapa · September 2018

Alice - if you're too overwhelmed with your own situation to be empathetic I don't know why you're even posting in this thread. The title is "I've hit my limit". What did you expect? Did you even click on any of those links? I clicked on the most promising one I saw and they want to reimburse you for transportation, which is great if you have the money to pay for it in the first place. It makes no sense.

Jo - I have a hard time believing they'll actually kick you out and expect you to take the bus if you're in really rough shape. When I went in for my mastectomy, they told me it would be an outpatient procedure, but they also told me a couple days before surgery that if all the hospital beds were full, they'd call off my surgery just as a precaution. Which means they weren't going to shove me out the door if I wasn't doing well, but shoving me out the door was the plan. Luckily, I was able to waltz out of there within a couple hours of being wheeled out of the OR. I was a little nauseous but not in pain. I had no restrictions on range of motion according to both my BS and PS, and could do anything that didn't involve lifting anything heavy or "resistance". It is probably their experience that most patients are capable of going home within a day, and so they expect to release you within a day. However, it is probably your experience that you don't recover as quickly from things as most people, so you expect to be there longer. They won't promise to keep you until they see that they need to. At least I hope, I have no idea what goes on in Canada. Maybe instead of insisting that you stay for x amount of time, you just ask that they not discharge you until you're capable of making it on your own, and if that happens within a day then you'll go home in a day? They may just be interpreting your pleas as you not wanting to leave the hospital instead of seeing it as fear that you will be kicked out before you can take care of yourself. Given the choice, I'd rather go home and I imagine you would too. Hospitals are a great place to catch an infection. Maybe just express that you do wish to go home as soon as possible, just not before then.

Also, did the doctors tell you that you couldn't shower after surgery? I had a lot of assumptions going into surgery after reading these boards that turned out to not be true. My doctors said I could shower, that I didn't need to put dressings on my drains, and that I didn't need to put gauze over my boobs or nipples, They also said there were no restrictions on range of motion (though that turned out to be a little optimistic - I wound up needing a few PT sessions to get my full range of motion back on the ALND arm). They even gave me a mesh bag with a loop to wear my drain bulbs around my neck while I showered.

I honestly can't imagine taking the bus home from mastectomy. Even now I have a rough time going over speed bumps if my husband doesn't slow down. I think you have a real point there and I hope you can get it resolved.

Yaniza · September 2018

AliceBastable You're right... it is different in Canada , the Health Care system in Canada is free for everyone. I have had a double mastectomy and reconstruction and a revision surgery, from subpectoral to prepectoral... basically an elective surgery because my subpectoral reconstruction was aesthetically good but I really wanted my muscles back where they belonged. I've gotten the best kind of care as has everyone in this city that I've met through a group of women who have breast cancer.

Jadedjo, I don't understand the caveat of having to be finished with your treatments before being able to get support from a group. That was not my experience. In fact my experience has been quite opposite to yours. As soon as I was diagnosed I was given literature directing me to outside groups that were available.

I'm going to suggest something that I only mean to be helpful... as I've said to you before I understand anger and how anger can be useful. I think it would be good for you to tone down your negativity before you put yourself out there in print. We need help at times like this but if you're managing to wear out people who are trying to help you... even people on this forum then you might want to employee some enlightened self-interest in this case and leave out some of the vitriol. It might be possible that you are wearing out the medical personnel who are as I can attest to always seeming to go that extra mile, (at least 98% of them).

I've offered before for you to private message me in case you lived close enough or I know someone close to where you are that can be of any help. That offer still holds.

Jadedjo · September 2018

Hapa

Your message popped up just as I was ready to sign out.I already stated again today to PS that I don't think I would be able to fend for myself especially if I develop a complication that leaves me unable to reach for my phone in emergency. They don't care.

I mentioned that my acid reflux will be set off by the antibiotics to the point I will barely or completely be unable to swallow anything solid,sometimes choke on my own spit and will be heavily nauseous nonstop for months afterward so I will only be able to have a liquid diet until it rights itself last time was close to four months even after I stop taking the antibiotics and it included a 60 pnds weight loss in under two months (not sure my heart could handle another round like that either). Doctors response "better get used to a liquid diet then because your still taking the antibiotics until the end" So they don't care that the medication they give me is going to make me suffer deeply during recovery and long after. They won't even consider alternatives.its do it our way no matter what the cost. ( I would still have to do it even without reconstruction so opting out isn't an option if I'm going to suffer like that I'm going to make sure it's WORTH it)

Yes I was told by doctor it's sponge baths until I'm healed mostly during me having drains. I can't touch the bandages. Unless I'm lucky (and I have already stated what my luck is like) it will probably be over a week or so before drains are out.unless I handcuff myself to the bed they aren't keeping me.maybe not even then. I was straight up told arms stay below the shoulder until given permission. if I could choose I would have chosen a different PS, I have felt ignored and disprespected and lied to ( he has informed me he can't go to the size I want today after the last appt he said he could)since day one. But it's too late now and they wouldn't have let me switch anyways.

The advocate is trying to see if I can get this post surgery check up stuff somewhere nearby me and is pushing for homecare so all I got to do is walk a short distance and someone will be checking on me regularly. If I get real desperate I will walk the long distance even in the cold and ice cause it's safer then riding the bus.the problem with bureaucracy is that they do things on their own time and that time is looong So I will probably have had the surgery before I get a decision of what they will choose to do.

AliceB's attitude was the last straw for me.its bad enough I'm getting crap from the medical community that is supposedly to be helping me but is adding to the bad issues I already have, to have somebody assume I'm sitting on my arse doing nothing when I'm doing everything I can to change it is a massive slap in the face. I am deeply appreciative and grateful to those trying and that do help and I do my best to try and access the places people send links to. It's not my fault that the answer is mostly sorry you don't qualify or you need to pay when the reason for me contacting them is that I can't pay.

The extra money I have been given is for food and the debts on my bills that have occurred due to me having to spend money to prepare for this surgery.if I use it for transportation none of those get paid and I won't be able to feed myself to end of months more so if I end up on a 4-5 month liquid diet again thanks to antibiotics.

How positive and grateful would anybody be given these circumstances?

Thanks

Jadedjo · September 2018

Yaniza

No worries other then a couple replies that I get emails for (and will probably eventually delete)I won't be posting anymore about anything.

I will update my diagnosis for those who are wondering but otherwise I'm done. I thought this was supposed to be a supportive community no matter what your mental state but apparently you have to be a peg that fits the right hole. You might have a great medical support where you are but I'm getting very little here. Just because it's great where you are doesn't mean it's great everywhere else.something you might want to keep in mind when you make suggestions. It's different everywhere ,for everyone, no matter where you live even if you live in the same city.

It's hard to wear out medical personnel when I have very little contact with them. I'm sure I mentioned how my phone calls are not responded to I have only made 5 in the time since the first ps appt and they were valid questions and requests so it's not like I am being a pest.

i had to make an appt to get more info and that info turned out to be a complete turnaround of what I was told at the previous appt. So I'm feeling somewhat betrayed alright.

Thanks for letting me know I'm wearing y'all out. I'll do my best to keep my mouth shut and my fingers off my phone keyboard here on out.

Try to remember that I don't know anyone personally on here it's a very public forum and have already shared way too much then I should of thus why the mass deletion.it was my only support system. I'm not too comfortable or feel all that safe sending someone even deeper personal info about myself. I get your probably trying to help but I don't know that for sure.

So ya..ok...,

WC3 · September 2018

Jadedjo:

Sorry to hear you are still having issues with your doctors and social social services. I think most of us here wish we had a solution to the health care issues in your area or some way to help. I hope things start looking up for you and that your surgery and recovery go well

Georgia1 · September 2018

Jo, I think people were truly trying to be supportive by suggesting the Canadian Cancer Society as a source of transportation and perhaps home care. A local church might be another option.

Wishing you all the best.

Jadedjo · September 2018

WC3

Thanks. Personally I think the recent healthcare cutbacks are the main contributor to my experience at this moment. People like me are the one paying the price for it.

Georgia1

Thanks. I know and if it had been a solution I would have used it. Sadly for me it's not. I suppose I'm in that inbetween place.too old for young adult services and too young for senior services and there is little to nothing left.

Amica · September 2018

Since posts have been deleted I've lost the flow of this discussion. But living in Canada, and having lived previously in the U.S. for decades, I don't think those of you in the U.S. realize how bad healthcare in Canada is. I am speaking not only for myself, but for several relatives and friends.

The support services that you assume are available to any needy cancer patient simply DO NOT EXIST in Canada, for the most part. If you are extremely lucky, and live in one particular region that has an excellent cancer center, you may get adequate care.

Let me give you an example.

At my cancer hospital;

1 - psychosocial support is limited to ONE visit with a social worker. There are no programs, no support groups, no psychologist or psychiatrist----NOTHING.

2 - there is NO on-call after hours doctor or nurse available, you are on your own

3 - my pathology report had a major mistake, and no one even noticed it until I did- this despite the fact that my oncologist said she'd ordered a comprehensive review of my pathology

4 - you cannot transfer to a better cancer hospital because they will only take patients from certain nearby geographic centers

5 - It is impossible to get a second opinion - I have been trying for months, they turn me down because they are too busy and I do not live in their catchment area

6 - you cannot get copies of your own medical records, like bloodwork, without paying them $30 each time

7- the Canadian cancer society in my area has a transport service, for $100, but only for regular appointments, like chemo or radiation. For doctors appointments and surgeries, you are shit out of luck & on your own.

8 - you pay out of pocket for at home healthcare aide assistance - it is not cheap

9- doctors take days to return calls and are snippy and rude

10 - It takes months to see a specialist (even a low -level one) , there is an 8 month waiting list just to see a social worker in the town I live in.

11- The monthly parking fee for patients at my Cancer Center is $240. Ridiculous. Otherwise it is $20, and I am there frequently, and it really adds up.

It is an awful medical system. I speak only for myself and other friends and family, but that has been their's and mine experience.

Jadedjo · September 2018

Amica

Sorry about that but I'm pretty much done being blamed that I'm the one causing problems by not doing anything rather then me actually doing something and being denied which is really what's happening.

Yep,yep,yep and BIIIIIG YEPon 5,7, and 10.

Cancer society here is the same, you pay a $200 fee and it's mostly for radiation appts or regular chemo. Everything else is don't bother contacting us just take a cab or transit.

We don't even get return calls from the doctors here it's usually the nurses and they don't do it either most times.

there are no alternatives where I live you get what you get and you just deal with it. The whole antibiotic issue I mentioned is what you can expect from the doctors here.

I called every place I was told to looking for a support group just to be told each time there is nothing until I finish ALL treatments. I don't need it then, I need it now. When it's over it's over I either survived it all or I didn't.

Some Canadians get lucky and hit the healthcare jackpot and have a good experience and strong supports. You and I don't seem to be that lucky.i am lucky to have supports in other areas that are fighting for me but even they are hitting walls.

I was told by the PS that I'm going to have to suffer for months from seevre gastrointestinal complications from taking the antibiotics and I just have to live with it. I lost 60 pnds in 45 days last time, could barely swallow my spit , couldn't swallow solids at all and felt like I was going to throw up every second of everyday for close to 4 months. I lived off of anti nausea medication and it barely worked.

And I wasn't recovering from a major surgery back then. I don't think my body will be able to handle the damage this time . I told him what would happen and his exact words were "you'll just have to learn to live on a liquid diet again" .

Who calls this health "care" ? I'm basically being tortured because he doesn't want to consider an alternative. My already fragile health is being tested by this and I vowed when I recovered last time if it happened again I was going to slit my wrists and that's if my heart doesn't give out first cause I can't endure that nightmare for another go around mentally or physically or financially either.

But some people can't seem to understand that because they had good experiences with their health care systems.if ONLY they were all created equal in every city and province. pipe dream.

Amica · September 2018

I'm sorry to repeat a question for something you've already answered. But please bear with me. Why will you be on such a long term of antibiotics? from the surgery?

I forgot, our Canadian Cancer Society transportation service is also $200 if you actually want to use it a lot.

Jadedjo · September 2018

He said for as long as I need it which means I guess the threat of infection is gone. It doesn't matter how short or how long I am on it. I was only on it three days that last time I had a throat infection about 4 years ago and paid a heavy price for about 4 months. Antibiotics also create laryngeal spasms in me which is what leads to the inability to swallow. It's not the length that I'm on them which will likely be two weeks it's what it triggers that will cause the biggest issues because THAT part will last for months.

I'm hoping I won't react as severely with this antibiotic and my gastro meds will help keep it from being so bad but my hopes for things like this have never been realized before so I'm preparing for the worst.

I was never given an alternative pricing he straight up said $200 better if used for daily radiation or /and regular chemo.

Puzzlewoman · September 2018

The antibiotic thing drives me nuts. They’re actually over-prescribed and then over time they don’t work as the bacteria develop resistances to the antibiotics. Ugh. Doctors who want to help (this doesn’t sound like your case) would want to do what they could to find an alternative with your known side effects. At least try a different low dose one, something. Best wishes to you

Jadedjo · September 2018

Thank you, I really hope the universe is hearing the good wishes people are sending and goes "eh, let's give her a break for now"

I think what got me was the callous words he said, maybe he didn't mean them that way but it sounded like I don't care what happens to you as long as things aren't complicated for me.I haven't taken Antibiotics in 4 years so it might work, it will make me sick as a dog and praying for death but it might work I've stocked up on gravol (anti nauseant) cause I know what's coming I should have included antacids in there too but I only have so much funds so it's basically wait and see what happens. I'm hoping for once in my life I don't react to the medications that are given to me. I just want to recover and not end up 50 times worse then when I started.

Puzzlewoman · September 2018

Yep. I’ve noticed some doctors are very good at being caring and knowledgeable, some are just rude, and some are too businesslike as they can’t handle the emotional pain of their patients and still be good drs. I personally like when they explain everything in detail to me and answer all of my many questions, and everyone is differnt

Jadedjo · September 2018

I think that's my issue with this guy, I want everything layed out in as much detail as one can give ( I'm a control freak and freely admit it) and he went and did a turnaround between one appt to the second , has barely told me anything and his attitude is very apathetic. I don't expect a showering of empathy but I don't need callousness in an already rough situation.

WC3 · September 2018

Amica:

I don't mean to sound like I'm playing "who has it worse" as far as the Canadian and the U.S. healthcare system goes. I just want to say though that I had many of the issues you listed here in the U.S. when I had an HMO.

I now have a PPO and that gives me more flexibility but there is a significant out of pocket cost.

A full copy of my medical records costs $50.

Jadedjo · September 2018

I don't think it's a matter of comparison, WC3. There are issues in every country when it comes to accessing healthcare.its really sad actually.

Same price here. goes up to $100 and a last time I paid the $50 it was three pieces of paper in a folder. Not even my full record. I told them I was never paying another one again if that was what they considered a full record. Never have either and I explain to doctors why.

Simple Doctors notes are $25-60 depending on how much info is needed.

I don't think it matters what country your in healthcare is a cash grab and damn the ones who can't afford it.

WC3 · September 2018

Jadedjo:

I agree.

jo6359 · September 2018

jadejo- I can appreciate your frustration with the Healthcare System. I would have to respectfully disagree with your comment that it's all cash grab. Based on your experience it probably feels that way. I still believe that the majority of doctors and other Healthcare professionals still care about the patient and the patient's best interest. Regardless of which country we are in, a great deal of effort needs to go into improving our Healthcare systems. Extremely high deductibles and co-pays can significantly impact a middle-class family trying to pay their bills.Individuals or families who are at or below the poverty line the situation is dire from the beginning. Cancer treatments are expensive. Navigating this system can be extremely frustrating, annoying and at times impossible. I try to use humour to deal with some of these situations but there are times I'm ready to pull out my hair. Whenever I'm in a horrible situation I keep telling myself find one thing positive right now and go on from there. I'm sure you will continue to explore all Community Options. Best of luck to you. I do understand this whole experience is frightening and anxiety ridden. Not only do we have to do deal with cancer but we have to learn to navigate a flawed Healthcare System. In my case the first 6 weeks after diagnosis, was confusing ; since then everything has went extremely well. I'm wishing the same for you.

Jadedjo · September 2018

Thanks

WC3 · September 2018

I don't think it's a cash grab by the nurses, technicians and doctors. They typically don't set the prices and many doctors struggle financially between student loans, supporting families and low reimbursement rates, but I do think a fair degree of price gouging goes on at the administrative and pharmaceutical level, like jacking up the price of an epipen to over $1000. And if you are in my neighborhood and have an ear ache and no insurance it is going to cost you $500 out of pocket to have someone look in your ear. My dad had his own practice and never had to charge more than $70 for anexam.

I've hit my limit.

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