I've hit my limit.

Jadedjo

They changed my tentative surgery date I now have much  less time then I was told. Still tentative Nothing has been confirmed and I probably won't get it until a week before the actual surgery at the slow as a snail rate they are going, nothing that needs to be approved has been even though it should have already especially since things be happening much sooner then expected and I need the confirmation to get my transportation approved or else I have no way to get there and back without using precious grocery money to pay cab fare. Never got the return phone calls I SHOULD HAVE GOT And finally asked one of the medical people who was already helping me to advocate for me because nobody is listening or responding to me and I just don't have the motivation or energy anymore. 

That's how I found out about the new date. she told me not the docs office. Ya. I have never felt so abandoned and neglected  by the system in my life and I think I've mentioned my bad luck with doctors before so you know how bad it has to be for me to feel that. So some of the blame for my mental state can go to the healthcare system that has treated me like unwanted trash but I wasn't in a very good place to start so all it did was tip me over.

 got some unexpected help but the agency that is supporting me monthly,well, They took something really good that would have eased the burden of  stress a bit and turned it into a headache and a new burden in a different way. Will still help but not as much as it could have and was MEANT to. I won't share what kind as this is a very public forum but probably not hard to figure out what. Story of my life, I never get anything good without paying a huge price or losing it just when I've grasped it. So thank you agency for ruining my one bright spot out of this whole dark nightmare. I don't care this part is public. Things like this help should be off limits in situations like this especially since it was through Cancercare itself.

Despite all the work I been putting into  working out and eating healthy even though I run out of money and sometimes food long before end of month by doing the latter and I don't lose weight and now I don't even lose inches actually it feels like I'm just bloating them back these days no matter how long or how often I workout I have realized it's all futile.its hard to get there and do anything when you know NOTHING is going to change no matter how much work you put into it. Should have known,not the first time it happened. Am I still doing it? Yes but I have literally questioned "why" out loud while I was doing it more then once.mostly I'm doing it so I can lift my fat butt up and around without using my upper body like I usually do.

I'm deleting some of my other posts because it hit me how very public this is and I'm deleting  ones I feel I shared too much. No offence to those who responded to those posts just felt I put too much of me out there.

Also I am not entirely sure I will survive surgery as I no longer have a will to live which I'm sure some of you picked up on in more recent posts.

it's been fading away since end of august and is pretty much non existent now as my counsler is discovering through one morose sobbing meeting after another so best clear it up the next few days ( got a lot of posts to go through and see what was oversharing and wasn't)instead of leaving this world with myself flayed open for everybody with internet to see. Didn't realize how much info I gave until I started flipping through. No pill is going to fix this. Life is just too cruel and person only has so much strength.

I did try contacting some places and programs  for support and stuff and pretty much got the "you have to wait until your finished ALL your treatments before you can put your name on any list" and was told  it's pretty much like that for the majority of what's available so I'm done there too. I don't have the energy or the phone plan minutes to call every place to find anything. I'm sure it's hidden deep somewhere in all those contact numbers. I'm just too dang exhausted of everything  to try searching for it and being shafted off to the next person who sends me too the next who says sorry got nothing and so on and so on.

Apparently in this useless city there is barely nothing for people starting out or in the middle of it,it has to be over. Like I need help when it's all finished? When it's over,it's over. I have already gone through the hell of this nightmare.

i don't need help then.

I need support now when it's barely begun and I have no idea what's coming and it already feels like too much (and in some cases as stated too little)and I haven't.even.started. Yet!

Other then being diagnosed.

So ya I'm just done. At this point, other then cutting this disease out of me because it's the worst evidence of my body's betrayal in my entire lifetime and it's betrayed me a whole dang lot , I don't care anymore. More then likely unless something changes and changes soon I will be turning down all other treatments other then surgery and waiting for it to all to end.ya it's going to be painful but there was never going to be a nice pleasant ending for me.i should have known by the time I hit 35 happy or blessed was never gonna be a word I used for myself in my entire lifetime.

And Crapola  I overshared again but ..whatever... 

thanks to all who have helped out and have supported me in many different ways.y'all are beautiful angels.

 Will be popping in and out occasionally  but being as I pretty much have given up at this point while the rest of y'all are fighting it's not worth me posting anymore.

Blessed be y'all,best of luck, health and life on your journeys.

Jadedjo

Um..so according to the search of my name I have 8 pages to go through..I sure was a Chatty Cathy... so ya I'm gonna be here over the weekend apparently..

Kanga_Roo

You know Jadedjo, one of the good things about this site is we can all vent when we feel sad or let down and know there are many others who are, or have been in a similar situation. I feel supported because people are not judgemental and genuinely care.

Sending you gentle hugs,

Jackie

Jadedjo

Kanga roo

Thank you for the hugs.

I know and pretty much everyone here has been great,  I just feel it's unfair to them  to talk about how I've already given up before I've even gotten past the surgery part which is just the beginning when so many are trying so hard to live and enduring so much more to do so. They say I'm early stage but I don't think so. I think it's way worse then any of them say and part of that has to do with nobody is listening to me and haven't run any tests to see if it is worse.

About three weeks ago I was hit hard with the realization that in fighting to have a longer future that has nothing in it except everything I was enduring before they found the lump but with the aftermath of what happens after a breast cancer diagnosis and the threat of getting it again even worse and the loss of what little sparks of hope I had left that were keeping me going. 

 I looked at everything I've gone through for close to 15 years now, the worst being the last almost 5 yrs with crisis after crisis close to nonstop and realized I just don't have any strength left. I used up my reserves. The tanks are empty with maybe a couple fumes not enough to get me through surgery,maybe chemo,maybe radiation and definetly tamoxifen and it's side effects for the next half decade.theres a point where a person  just says enough! I can't do this anymore. And I hit that point very  recently. 

Are my decisions set in stone? No.

But I was having a hard time with the chemo and tamoxifen part even before my inner fighter faded away so with it now dead it's not looking very likely.

I got a health care system that's already neglecting me before I'm getting the treatment so imagine how abandoned I'm going to be afterwards.im already in this fight alone on a personal front,now I'm alone on the medical side too. The one place I thought I would have some support ( don't get me wrong the nurse who's advocating and my counsler are doing their absolute best and I'm grateful but it's a huge system or should I say a huge system of utter failure when it comes to some patients)To someone who was already struggling mentally it was the final blow that pushed what was already there over the line.

Thanks .

WC3

Jadedjo:

Sorry you are having such a hard time with the health care system there and getting the support you need. I don't blame you for being so frustrated with them. It sounds like any sane person would be. I hope you stick around here though even if you don't share as much.

hapa

Hi Jo,

I'm sorry to hear you are having even more troubles with your cancer center. They seem like the pits. I totally hear you on hitting your limit because I think I may also have hit mine. After eight months of neoadjuvant therapy including one mis-start, retyping of my receptor status, six rounds of chemo which didn't do much to eradicate the cancer as I found after surgery, BMX with SLNB followed by ALND, they are now recommending an aggressive course of radiation. Seriously, wtf is left to irradiate? I seriously feel like I've had enough and after hearing of the side effects of radiation I think I might rather take my chances with the cancer coming back. I don't think a lifetime of managing a swollen arm sounds like much fun.

I'm so sorry you're having such a hard time. This cancer stuff stinks at best, it's just one crappy thing after another. I was hoping to get back to a semi-normal life but I don't know if that will ever be possible again if I do the rads they are recommending. I really don't blame you if you don't want to do chemo or tamoxifen (though I would encourage you to give the tamoxifen a try because some people have no ill effects at all, and if you do you can just stop). You might want to stick with your diet and exercise though, as some of those changes can have as big of an effect on survival as chemo.

This stuff is so hard. Nobody understands how hard it is until they've gone through it. And nobody realizes how much of a difference kindness can make to someone who is going through treatment. Sure, we can manage to do a lot of these things for ourselves, but getting some help here and there sure is nice. They don't understand sometimes that even though you look like you're doing fine, it's taking all the strength you have to look like you're doing fine and you wouldn't be asking for help if you didn't need it.

Also, I don't see any reason to leave the board. Delete some posts if you're uncomfortable about what you've shared, but this is a great place to vent and really the only place to get support from people who understand what you're going through. The rest of the world thinks they know what you're going through because they had a sister/aunt/MIL who went through it, but they really don't and it's frankly annoying when people try to empathize with you but they don't know wtf they're talking about.

Take care and I hope things start turning up for you. You can PM me if you want support but don't want your business all over the forum. (Misery loves company!)

Jadedjo

WC3

Thanks. I will be popping in and out occasionally and will update on this post any changes. If I live through surgery I will post a "I survived it" post in the surgery thread and will re-update my diagnosis as soon as I get it myself if what's going on now is a hint it will probably let be way beyond the 3 weeks after surgery they stated.

Hapa

Thank you,I appreciate it.

I'm sorry to hear all your going through. One of the things my counsler stressed is do what you feel you can live with at this point, accept the risks and don't look back. People don't stop and think quality of life matters as much as quantity and if treatment and it's aftermath is going to destroy the rest of your quality of life is it really worth it?

I know my life will never be normal again even with only surgery. There are restrictions I never had before hat I will have now even more if I get lymphedema.

I find for some who are going through it themselves even they don't understand because they aren't in my shoes as someone who didn't have much to live for before diagnosis and now has lost the little sparks I did have because of the cancer. They have reasons to go through the hell of each treatment. I don't. And it's hard to explain that to somebody trying to fight with every tool at their disposal.

The diet thing is going to have to change as I'm running out of money and food before the month is over, definetly not as much meat (proteins) once surgery recovery is over.although I found a way of stretching things out by buying the thighs and drumsticks on sale instead of chicken breasts then boiling it until cooked well,taking it apart putting into double serving baggies then when I want to make a wrap I cook in small tsp avocado oil margarine with spinach leaves,and black pepper and dill. Makes tasty wraps and a lot of them. One baggie equals 2 meals in a day. this is actually what I will be doing the last few days before surgery.

I probably will be keeping on with the exercise once I get the all clear,just not intensely as I am doing now. It's getting to the point that the almost 2 hours a day is getting to me as it's not doing a thing other then tiring me out and frustrating me but I would like my stomach to not over beat out my new tinier boobies at how far it sticks out from my body. I'm still considering tamoxifen unfortunately this system doesn't allow you to see an oncologist until your final pathology is back. I was told 8-11 weeks after surgery is usually when you see one here. So it's hard to discuss it with the doctor when you can't see the doctor to discuss it with until pretty much almost xmas time.

xmas is already an extremely difficult time for me and starting treatment then it is NOT going to happen no matter what kind it is but I am still considering tamoxifen.

My difficulty is trying to get the doctors to understand that my stomach doesn't tolerate most medicines.

Thanks,take care  and good luck on whichever choice you make that's best for you.

Alicethecat2

Jadejo

I'm so sorry you're going through this. It is tough. Nobody can deny this. Six and a half years ago I lost my job, my realtionship broke down and then I got breast cancer. I well remember counting out food to eat. But I got through it and so will you.

This is the most distressing time - waiting for surgery and treatment. Once it has started, you will feel better, I promise. Somebody wrote this once on another thread once and I wondered how they could know. But it's almost as if we work through stages. Once we have accepted that something has happened to us, we accept the wait and then we are ready for the next stage. Then the next. And we come out the other side.

An idea. Your thoughts are coming across very clearly. Could you keep everything you're writing and split it into a beginning, middle and end of treatment and looking forward to the rest of your life? With a little editing and adding a few full stops from time to time, you have the makings for a good blog - and advertisers may wish to advertise positive, healthy products or services. That could bring in a little money and lead to a career as a writer. Why not?

If you're going through a storm, keep going, as the UK Eurovision 2018 song says.

I say, keep going and write yourself a brighter future.

Love

Alice

ceanna

JJo, I've responded to you before and continue to catch some of your posts. I agree with Alice who thinks that you will want to save your posts and make a blog of them, or at least use them for some reflective writing after your surgery. Your writing will help others as will the stories and words others have written in response to your concerns. We all help each other, and after you get further in the journey, you will find yourself helping others who, unfortunately, will be diagnosed after you.

As others have pointed out, you are at a difficult point in the breast cancer journey, and to make it worse, you are experiencing difficulties with delays and the process in the Canadian system. . Sounds like you now have a nurse navigator--perhaps it is time to relax into their leading, and even if their timing is not your timing, and their choices not your choices, to ease the process for you. Take the help they are offering. Waiting is not easy for anyone. I'm glad to hear you're planning ahead for meals, etc. That will greatly help you when you get home. Take it one day at a time, one step at a time, and one blessing at a time. Gentle hugs. Ceanna

JoyceA

Dear Jo, I wish I had words of wisdom that would ease your pain. I’ve read some of your posts and your inner strength comes through. I admire you for eating healthier and exercising. I don’t know why but I just can’t force my self to do the same. If posting helps you through this crappy journey, I hope you continue. I rarely post. I find reading others‘ posts reassures me that my fears regarding bc are normal. If posting makes you feel better, please do so. Continue to take care of yourself. Joyce

Jadedjo

Alicethecat

Thank you

It does seem like when it rains it pours, doesn't it. 

I wouldn't even know where to begin to start a blog.

Cranks

Thanks. I am trying to plan ahead but some of the issues are I don't have a set date or time for anything so it's hard to plan anything. I'm doing little things right now like switching my summer clothes to fall/winter in the closet, exchanging my DVD tv show sets to the lower shelves I can reach without stretching for the 3-6 weeks  recovery  especially the first 2 weeks when it's going to be bad with the drains and such.  I can't even go buy the items I need due to having no money until the end of the month.i also got a net bag of clothes that I will be wearing until I'm fully recovered that I will be setting into separate piles on my bench the 30th so I don't have to reach up for hangers the first 3-4 weeks. By the 4th week the winter weather will have hit and I will need the sweaters I hung today.

Unfortunately she  is not supposed to be a nurse navigator she was forced into the role due to the people who were supposed to be doing the job slacking off.

JoyceA

Thanks

I wish I was able to keep up what I was doing when I started but these days im not doing things so intensely due to my state of mind weighing down my energy and motivation. I also went from 7 days a week down to 5 and I now only do 2 hours maybe three days of the week the rest of the time it's 60-90 min.There are some days I get ready to go start the DVD and then two min in go "nope this ain't happening today" 

the only thing right now pushing me to do it is I keep hearing that the fitter and muscular you are the easier & quicker the recovery and it reduces the odds of complications. I tried to lose weight too but that didn't work out for me as per usual. So don't feel bad about not being able to do it. Even if you can scare up some energy to go for a small walk each day it counts. The Doctor told my friend 150 min a week of some kind of cardiovascular exercise.

for me it's desperation more then anything.

Blessed be.

Yaniza

Your situation seems so dire. And so out of character for our Canadian system. I wish you would private message me so there might be something I could do if we are not that far away from each other.

I was just with my plastic surgeon today for follwup. I can't emphasize how opposite my experiences have been to yours. This is so unfair. If you are stuck in some hamlet, that is even within a larger city but so backward and messed up that it needs to be exposed I wish you could private message me and let me know where this is. I was in an environmental activist back in the day. Since my cancer diagnosis I could see maybe becoming active in finding and beginning to correct where the system isn't performing as it should be and trying to do something about that, for everyone's good!

Yaniza

Jadedjo

Yaniza

Thank you.

I don't know if it's dire, I think part of the reason they are so lazy about things is I'm low grade. So in their eyes there no super hurry. Also most people aren't as poor as me and can get things done with only a week to ten days notice. Between the agency and the medical people ( still contacting about my surgical bras,still not getting any return calls,still not approved) I feel like the unwanted stepchild  who is treated worse then the family dog.

Even the nurse is having a hard time getting return phone calls and she's a freaking medical professional so it's just lazy workers who don't want to do their jobs.

I'm about ready to have a nervous breakdown like seriously I can't take anymore. I got a feeling I'm going to lose it the day of the surgery because not only have I hit my limit I've gone over it and deep dived.

Jadedjo

My paperwork got lost. This why no approval.even the BC nurse is going "WTH".approved today go to get them tommorow so I can wash them with the rest of laundry.

Amica

JadedJo

I'm sorry you are having these troubles. I am not doing well with the Canadian healthcare system either. I am unable to get a second opinion or a transfer because the hospitals are all full up and I don't live close enough to the Toronto hospitals. I find the care here absolutely abyssmal. I feel like the whole system here doesn't give a f* and would be just happy if I hurried up and died so they'd have a slot open for another patient. The support services at my cancer hospital consisted of ONE visit with social worker --- that's it! My next options are contacting something called the Ontario Health Ombudsman who is supposed to help with people who are having trouble accessing the medical care they need, but knowing Ontario government, that will be a joke too. Or else I have the option of contacting my Member of Parliament. Yeah, politicians, they really get things done (not.) I am desperate and all alone and in a very bad place. So I feel for you, you are not alone.

I saw you posted that you think they are being slow because your situation is not so dire. I think they are being so slow because my situation is so dire, and they've written me off, just another Stage IV person who will perish so whats the rush with effective treatment. Conclusion, for those of us stuck at bad cancer centers, they're just slow with everyone and giving everyone substandard care.

Jadedjo

Amica

Thank you and I'm so sorry you have to deal with that crap and do t really have a support system that we all need during this journey whether it's our first time or reoccurances. 

I know I been lucky in the fact I already had a counsler so it worked out there and she put me in contact with the nurse  who has been advocating for me so I know I got quite lucky in that end.

I been telling others about what I been going through and they can't believe it because it's either never happened to them or anybody else they know.

I just got final details today and fate decided to send one flick of nice in my direction that I get the needle at nuclear medicine the same day as surgery instead of the day before like they said. So I have the day before to do all the last minute stuff without worrying how I'm going to physically and mentally react to the needle.

People forget not having to pay for some services because of Canadian healthcare doesn't mean you get  good care. I suspect if I was paying not only would things be mostly done now but I would have not been left out in the cold like the unwanted dog at the pound.

I am now starting to freak the hell out because all I keep thinking is I'm going through this alone and will be mostly ignored by the only people I do have (the medical community) while I am recovering from surgery. Last thing I needed with all that's going on. (Things have been insane the past week and will be so until the surgery day because of bureaucrats, lost paperwork and apathetic people)

Thanks. Hope things start going better for you. Blessed be.

Amica

JadedJo

Good luck with your surgery. When is it? I hope it goes as well as possible, and that you have a safe recovery.

I hope you have at least a phone number from the hospital or your doctor that you can call post-op in the event that you need to. Stay at the hospital as long as possible until you feel comfortable leaving. If necessary tell them you feel faint and can't leave yet.

Alicethecat2

Hello Jadejo

Good luck for tomorrow. My guess is that when you wake up tomorrow your mind will be in a different place. No more worries. It'll be saying, 'Right, today's the day. Let's crack on! Let's do it!'

By the way, as someone who pays for healthcare via taxes, it doesn't have to be the 'best' - whatever that is. It just has to be good enough.

With a grade three tumour - and Her2+ near the chest wall - and as a six and a half year at least survivor - I would say my treatment was good enough. My guess is that yours will be too!

I had the injection and a mastectomy on the same day. Quite good, really. At least I knew they were all awake. (Sorry, that's my dry sense of humour.)

We're routing for you.

Alice

Jadedjo

Amica

Thank you.As this is a very public site I won't give an exact date other then to say coming soon in October. As I am learning the hard way,phone numbers mean nothing if nobody returns your calls.

Alicethecat

Thanks but You must have misunderstood somewhere? My surgery is not tomorrow. It's in October.

A person should get proper good  treatment not half arsed mostly ignoring your patient and not sharing info important to the  treatment I seem to be receiving at the moment. I know with this system I will never get super duper but at least remember I am a human patient and not a file folder number and that's the issue I'm having right now with what's going on.

Yes I am grateful it will both be on the same day. No using precious bus fare to get a needle shoved into my boob and then going home for 24 hrs to wait for the surgery itself. What I got today was the exact confirmed date and time of the surgery itself which I hadn't received yet. Everything was still up in the air until today.  Some things still are I was told by disability unless the doctor requests in a letter  I take a taxi home I will have to bus it. After a double mastectomy with implants. They want me to bus it. Like freaking common sense says I'm not going to be in any condition to ride on a bus for over a half hour but they want a letter saying so.  I'm so done with EVEYBODY making things so much harder then they should be. The fact I have cancer and have to have surgery should be enough for me to deal with but no I have to deal with the stupidity of bureaucrats.

Out of all the people I've talked to they say they never heard of anybody getting such short notice as I have most have gotten at minimum a months warning to a set date and time. If the BC nurse hadn't been pushing for me I probably wouldn't have found out until a week or less beforehand that's how long they took and I still don't have written confirmation. 

Amica

JadedJo---what? that's outrageous. Who wants you to take a bus after surgery? I don't understand. I am so sorry that you are dealing with such !#^* idiots!

Beesie

Jo, are they telling you that you have to take the bus?

Or are they saying that in order for them (the hospital and/or disability services) to pay for taxi transportation, they require a written note from your doctor? And you are saying that for budgetary reasons, you will have to take a bus if they don't pay for the taxi.

Can you not get the letter? I appreciate that it's one more thing to do, more bureaucratic crap, but hospitals (not just in Canada but anywhere, I would think) aren't in the business of paying for patients' transportation home, and obviously need to have some rules around when they will pay.

Yaniza

Hi Jo, I must be getting old... it's hard to keep up.

Are things happening too fast or too slow? Are you getting not enough attention or too much attention that doesn't help you feel better?

If Social Services and "the Canadian Health Care System" aren't coordinated enough to get you back and forth to the hospital in a cab then you are going to have to go to Social Services or whoever it is that's helping you financially and make sure you have enough money to get a cab. I do believe there is a division of responsibility here as far as the doctors, the nurses, the general staff at the hospital... and your financial situation.

I know I've suggested getting in touch with breast cancer groups. They are in every community. They are not that hard to find. There are so many kind caring women who understand what a stressful time this must be for you that I'm sure you could arrange a drive and perhaps even some Home Care.

I understand that anger can give you a kind of strength because I've used it for that myself but right now it seems like a waste of your energy. I hope you can bring yourself to reach out beyond the hospital and whatever Social Services support you're getting to some independent groups of women, who know what you're going through, who might live in your area.

Jadedjo

Amica

They say unless I have a letter straight out saying that I need to take a cab,I am expected to take the bus.

Beesie

I am not talking about the hospital I am talking about disability. The hospital don't do crap. Which is why this is such an issue right now. If they had given me a surgery date a month in advance like they have done with the majority of people who have had different kinds of surgeries (and a friend of someone I know who had mastectomy) all this would have been done by now. No last minute freaking out and rushing  cause stuff ain't done.

Yes they want proof the surgery is happening and wanted a written letter. As if I didn't have enough issues getting the docs office to do anything now I have this on top of it. I cannot afford a cab,I can barely afford bus tickets. It's bad enough I have to bus it the morning of the surgery to the hospital while I'm freaking out and probably having a  panic attack.

Yaniza

The issue isn't slow or fast it's that they waited so long to get the set surgery date and time and then they gave it to me almost last minutes notice when the original "tentative" date (which I had to push to get an answer for only to be told it wasn't actually a set date) was way further then the new set one so now there is the dashing to get all the stuff done that needs to be done using up my precious bus tickets when it's too far to walk to get things done in time.

In this city there are no support groups until you are finished treatment. I have already asked.repeatedly. Same answer.

Nothing for anybody starting out.soemthing I have stated is quite unfair to those of us who are in the beginning and need a support system.

Thanks to all.

Jadedjo

Even with a Doctors note they will only cover cab fare home,not cab fare for my first week appt,not cab fare to get the drains out I have to ride a freaking bus with bars I can't reach because they are over my head and the bus is always full so odds are I'm going to need to stand and hold on to something.in pain.with tubes coming out of me.

And if that was not bad enough if I am released in the morning I have to wait somewhere in the hospital (cause they are booting me out they say early) until office hours to call the transportation number and then wait for them to contact the cab company.  If they release me as early as I think (around 5:30 in the morning)  that means I have to sit somewhere in public in the hospital for HOURS until I can go home. This is time I won't have pain medication as I will not be home to get it delivered.

Prisoners in jail get treated better then this.

Amica

JadedJo I am so sorry. Can you talk to your social worker about this? Maybe she could think of ways to get you some assistance. I'm sorry if I'm repeating what has already been suggested. I wish I had some solutions for you, because this situation clearly sucks. How can they just boot someone out after surgery and make them sit to make a phone call. Couldn't they let you stay in your room until business hours? This sounds so wrong the way you are being treated.

AliceBastable

Jadedjo, does Canada have a Cancer Society? In the US, they have volunteers who provide patients with rides to appointments and treatments.

Jadedjo

Amica

Thanks I contacted the nurse who's been my advocate and she called me back unexpectedly this evening she is trying to get ahold of the cancercare social worker to see wth is going on with disability doing this and what can be done to ease this stress off me.i am not kidding when I say I'm on the edge of nervous breakdown and a lot of the blame for it is going to disability and the abandonment and lack of even a touch of caring I feel from the cancercare people I'm supposed to place my life in the hands of.

She has never heard of this happening before,the cab fare for appts  is usually covered until the patient can handle transit. She also said it's unheard of for me to have to wait until the office is open to get transportation home it's actually quite cruel to make me wait what will probably be more then two hours out in public (prob in the cafeteria) until they start answering phones at 8:30 and that is if I get through instantly which is doubtful as I often get the busy signal or answering machine trying to call places like that.

The hospital won't keep me as they need the beds and it's not "cost effective" to keep me there. I would prefer to be kept a couple days just to be safe and secure knowing I can fend for myself and am not going to have major complications when I'm by myself and possibly unable to get to my phone to call for help but they are booting me out early morning following day, they wanted to boot me out same day but I stressed I have no one to help or watch over me for the 24 hours.They don't care. The care part of cancer care is a big fat lie.

I've been recently reading about your issues too so you know better then anyone what a lie the care part is  some places in CDA. I Hope they finally pull their heads out of their butts and start helping you the way you should be helped in your situation.

Alicebastable

Thanks I called  the cancer care society transport and it's a one time fee of $200 then mostly unlimited rides for the time of your treatments. It's not free and for me not affordable.I don't even have money for cab fare and barely enough for a sheet of bus tickets each month. I don't have money to pay the fee. The charity money is going to bills I owe money on and food and items to get me through recovery.

The only time disability will pay it is if I need radiation and have to go daily otherwise I need to suck it up and ride transit. Or that's the attitude I'm getting. I think the fact they want me to sit and wait just to go home  is a hint of how heartless they are with no access to painkillers until I can get the nearby  pharmacy  to deliver the T3's I will be prescribed.sitting in a hardback chair for a minimum of two hours with tubes coming out of me and having surgery less then 24 hours the day before. Ya. I'm tearing up just thinking about what shape I'm going to be in at that point. I think at one point I told the nurse death is looking more and more enticing then having to keep going through this hell.i haven't even had surgery yet and I'm being treated like crap from all sides. What's it going to be like afterwards when I'm vulnerable? That's if I survive surgery. Right now I'm not so sure.

 I went digging and found old T3's from late spring of 2017 from dentist. I only used one the first day so there is still a mostly full bottle left.i don't like taking strong painkillers unless I absolutely need it.i tossed it into my hospital bag.they probably aren't 100% effective after over a year but it's better then nothing..I'm that desperate...

I literally broke down in tears calling the bc nurse and telling her what I was told. This is the fourth time in a week that they have made me breakdown in tears due to their heartless attitude and making me run around like a chicken with it's head cut off to even get what's needed for that one ride home. Bc nurse is trying to get ahold of people to either push disability to stop being dicks or find alternatives so I'm not put at risk on public transit during the first few weeks I have the drains and am still unable to lift my hand above my head to grab the bar and being being slammed and knocked around by impatient passengers wanting to get off. I have been riding transit all my life I know exactly what they are like especially the busy almost always full one going to the hospital I have to go to.

Otherwise 

The past week I been trying to do deep cleaning of my apt (aka as the dust collector) moving things around so that they are easily accessible, doing things to make it more accessible while my movement is restricted ( using my crocheting skills to make 2 super long half inch strips for the pull strands of my ceiling light/fan and attaching them. I had to tie them up for now as I keep walking into them when they are loose and they are white and red so it's like Xmas come early but they are long enough I barely have to lift my arm up now to shut on/off the light or turn on/off the fan. I dug out and used an old plastic basket to put on the back of my toilet and filled it with toiletpaper rolls, light weight shampoo/ conditioner bottles, liquid soap bottle and filled it with a bunch baby facecloths I got from dollar store since I have to birdwash until bandages are off and drains are out.

I don't know when I will be physically able to do laundry again. So ya I bought enough to get me through 12 days (6pks) hopefully by then I can do a load or two without being in agony or risk tearing anything when reaching into the washer.i need to do as much as I can now my energy is starting to wane due to the emotional roller coaster I am on recently. I also went through some stuff I have and found a the simpsons cross body pouch thing I don't remember buying so it has to be at least 5-10 yrs old and elongated the shoulder strap to see that I could fit it around my waist and once I deemed it able to fit I dug out a black fabric decorative pouch attached it to a key lanyard and shoved it into the front pocket of the Simpsons pouch.one way or another I'm gonna have me a holder for the drains.

I was so downtrodden and upset that the day I got some of the charity funds (as my bank places a 5day hold on cheques over a certain amount and only release half )I paid one bill in full actually over full.the rest I'm waiting until after surgery there  was a loophole so I'm getting the full amount just in two separated months.that way I have money in my account until I can comfortably go to the bank again and will have more to pay off the rest of the bills in November.

I  then  I went to the purse/luggage store and decided to buy myself something nice I call  it my ' dang girl you have breast cancer and have to get your boobs lopped off' sympathy gift. I found a light weight mauve, 3 section carry all bag that's big enough to fit all the stuff I am bringing but small enough that it doesn't take up all the room in the white plastic patient bag they give you.

 About the size of a carry on I think. It was on sale almost half off. I'm considering it a win.also got a medium sized messenger bag for $10 as it was a final clearance item. I'm using it right now and will until the day before my surgery. Still a win.  Should I spent the money, no. But the mauve carry all is a perfect hospital bag with its size and sections ( and if by some miracle I change my mind and choose to do chemo ,highly doubtful but still,it will be my chemo bag)and the messenger bag that holds a folder or two easily has been a relief with all the errands I been running trying to get as much stuff done so I can relax and try to keep having panic attacks for the days leading to  surgery day.some stuff has to be done last minute but I'm doing what I can now.

And then after the gift to myself I went home and ordered pizza. I had a reaction to it (expected as I have reactions to certain foods) but I didn't care I was craving pizza for a month and I'm getting sick of wraps. Had the last of it today. I'm considering that a win too. I suffered for it but I enjoyed every dang bite.

It's the little things.you know.

Blessed be.

Jadedjo

My workouts paid the price for my mental state that all this has put me in and it's probably going to stay like that until it happens.

At this point I'm only doing 45 min strength/cardio mix workouts with 3 pound weights  and it's about every second day. I try to walk when I can but it's been nonstop cold and rain here and I don't want to risk getting ill before the surgery.

The day before surgery I'm going to do a double workout with weights cause its going to be awhile before I'm using weights again and I want to give a last oomph.actually it's going to be minimum six weeks before I can workout again even lightly and that's recovery without complications which I don't think I'm going to be that lucky. Walking is out because it's supposed to be rain and ice for  all October. I was already a klutz. Add movement restrictions and surgery recovery and it's not going to end well.

Jadedjo

Wanna know how uncaring they are, I explained the last time I was on antibiotics it set off my acid reflux so severely that I was on a 500 cal liquid diet for about 4 months even after I stopped the antibiotics a week in .Did they decide to come up with alternative ways for me to get antibiotics?

 nope his exact words were "get used to another liquid diet then" yep.

 And there's nothing I can do about it. Doctors word is law around here damn the patient who's suffering.

You would think the medical communtiy would try to help you avoid getting sicker and not make you sicker while not give a crap what it's doing to your daily quality of life. It's not like I recover like a snap of the fingers if it sets it off again it doesn't matter when I stop the antibiotics I will be in that state for months. Did I forget to mention one of the side effects it does leaves me unable to swallow any  solid food substances and sometimes even my own spit which is why I would have to do a liquid diet.yep.

I'm ready to walk away from all of it.

AliceBastable

Link to Canadian Cancer Society. Two of their many services are transportation and financial help. Just enter your postal code for your area. If you actually want help.

http://info.cancer.ca/CSD/searchCon.aspx?id=3172&L...

Jadedjo

 Alicebastible

No offense but your "if you actually want help" statement really pissed me off.do you think I haven't tried places including this one already?

How do you think I found out there was a  one time $200 fee for the transportation services for the entire time of treatments. It's not free. And $200 is pretty steep if I'm not going for daily radiation which is the only time disability will cover it.

As for financial help I already received some charitable fund from cancercare (it may actually be the same thing)but it's not enough to cover the in total over $40 cab fare every time I go. Not to mention $40 a round trip to and back from the hospital is a bloody waste of money that can go towards bills or food especially if I react to antibiotics like last time and  have to live off of smoothies and protein powders because I can no longer swallow solid foods.

You seem to have made the assumption I haven't tried finding help, haven't called places looking for it, that the advocate hasn't tried finding help( she's doing the best she can and in some ways has been but transportation  not so much luck), that others haven't tried. They have tried. And hit the same walls I have. Everybody in the medical community expected disability to cover it and disability ain't having none of it so I'm left out in the cold.

Maybe the cancer society is different where you are but around here they ain't much help unless you HAVE money.

Nowhere is much help unless you have money, or someone to cover it or more likely a friend who can work the system in your favor. I got enough crap to deal with right now I'm tired of calling around to keep hearing "sorry we don't do that" or "sorry unless you pay a fee we can't help you" or when I try calling for support system  "sorry you can't join until after all your treatments are over" .yea those are the answers I keep getting.

Don't make the assumption I haven't tried.i have. Maybe I'm the wrong demographic ( not a senior or a child) but there hasn't been any help for me.