Fed up with health system.this ain't a happy post.

Jadedjo

So here I am pretty much 2 weeks after my appt with the PS and I STILL don't have any sign of a surgery date.

I called today got a machine as it was late and pretty much ended up snarky with a paraphrasing here "I thought you people moved faster for cancer related issues but obviously not " 

I'm not stupid I know the date won't be until October sometime (though the longer they wait it may be November) but I need time to PREPARE not just physically but mentallyand financially ,I'm losing my boobs and may or may not have reconstruction at the whims of the PS and I can't do that with only one weeks notice which is what I feel like is going to happen.

Why did I post this here in this thread? 

well after finding out I was losing the nipples I pretty much slipped into depressive despair. It's a struggle to just get through the day I don't want to be fighting the health system that doesn't seem to want to do anything on top of it . 

I'm superclose to just saying screw it no surgery no nothing I don't care anymore ...and apparently neither do they. I was diagnosed July 22nd saw the breast surgeon second week in august and only saw the PS second last week of august because I called and asked if they lost my paperwork.now it's the same thing.

I feel like if I had money or a fancy job instead of being on disability things would have happened sooner.but I don't have those things if I did I would be able to have surgery and buy the crap I need to get through it and after it instead of the last few days or first few days of the month because that's when I have the most money for food and I can buy the supplies to get me through the first two weeks.

 I cant even pay for all my bills except rent  right now because of this useless disease so now I'm going into debt too.

I just feel like I have been abandoned by the system that's supposed to be saving me especially when I hear people saying oh I got surgery within 6-7 weeks of diagnosis. Ya that's not happening here. This is not a mental place Healthcare should put someone who's already asking if it's really worth fighting. I don't want to go through hell of all the treatments just to have more years of this life if nothing is going to change for the better and I'm not saying nothing is changing. It is. For the worse.i didn't think things could get any worse in my life again like 4 years ago. Boy. Was I wrong.

I guess I will see in the next 48 hours if they will be giving me a date or excuses. And I don't think you realize what it took to make that phone call and leave a message  I was polite until that moment because I am frustrated and done because this is the same doctor who pointed out all the complications and stated he wil remove the implants or not even place them  if he feels the need but never discussed what kind of implants he will be using or if it will be over the muscle or under the muscle even though I stated I'm not comfortable with muscle being cut into. He pretty much glossed over it and didn't give an answer and in the message I said I wanted some answers.

Part of it that day had to do with me, my appt was in the morning I barely had any sleep and can't have caffeine so I was already "blinds are open but no one looking out them ",I was scared  and I had just been told repeatedly of possible complications and heat would be done which sent my head reeling and he barely mentioned  nothing else for the majority of the appt and that I PROBABLY  wouldn't be able to keep the nipples . I mean I was ready to go flat before the dti thing so I was half prepared but had been told they could be saved by the breast surgeon and I had devoloped some hope that I thought was lost forever. There was my mistake.i should know better by now to have hope. It's always destroyed.

and he didn't TELL ME at all.it was on the consent paperwork he sent the nurse in with 'non nipple sparing mastectomy' so that's how I found out he just stated earlier that IF he tried to save them I would probably lose the implants and most breast tissue thanks to my skin issues which is the only reason I signed.So that's how I found out I was only going to be hugely physically marred and scarred by this instead of slightly marred and scarred. Sadly you don't get to chose your doctors here it's who your referred to.

 Blow to the system,yes?one I'm still trying to pick myself off the floor of after being kicked and beaten into the ground by my betraying useless body.AGAIN!

I'm still angry but it's a sad despairing anger so I can't use it anymore like I was to push myself to exercise and stuff.ive laxed  off.though I'm trying to build up again. It's very slow going.

 Before that day I would have called them starting day 7 because 7 days is enough time to coordinate a surgery date.now it took me almost 14.i still haven't started calling places because they are going to want an exact date so they can start seeing if there's anything that can be done to help me but I don't have one which is another reason I need to know in large advance not a week before.

 I'm telling you I bet everything has been picked out awhile ago and the one person they should have let know was forgotten. Me.It's happened before.nothing this serious but it's happened with specialist appts.

So ya this is a whining and ranting post about the Canadian health care system.

 And I apologize deeply to those who are fighting so hard for their lives about me being so...blasé..about mine but y'all have something worth living for,fighting for. I don't. The idea of having to endure the living hell of treatments,losing body partsand feeling to those areas ,developing life long side effects etc just to earn me a few more years on this earth with this same existence I'm living now?and the threat of local or distant reoccurrence on top of it? I would give anything to have a reason, I have looked for one since diagnosis.I got nothing.

Let's just say I'm wondering if I'm already dead and this is actually my Hell. That's how much my life has and does suck.at this point I'm so despondent I will be surprised if I wake up from the surgery...whenever or if it happens..

Sorry all but I don't think my story is going to have a happy ending. Not unless something majorly GOOD happens (and doesn't get ripped away or completely negated by the BAD like it always does)that I finally feel like I could stand being alive a few more years on this earth. 

Blessed be. 

KCMC

Hi, I don't live in Canada but I know how frustrating it is waiting for a surgery date. I was diagnosed on March 1st and had my surgery on May 22nd. It took almost 3 weeks to set up a surgery date. I know how disappointing it can be to find out things don't go as planned, I was hoping to have a lumpectomy but I couldn't save my breast, it was one blow after another. This thing called cancer sucks.

I don't mean to sound like a cheerleader but You do have something to fight for, YOU. You are worth it, I don't doubt that things look quite dreary now, but I promise you it does get better. I finally finished up treatment a month ago and there is a light at the end of this miserable tunnel you were pushed into.

KatyK

I am not in Canada either but I can tell you the beginning of this cancer journey is tough! I was very frustrated with where I get treatment and how I had to call them to push them along on things and they still forgot some things and dropped the ball. This is so hard when you are are already so emotional dealing with cancer. Keep advocating for yourself! It helps to have a friend, partner or relative do some of the calls too. And on the practical side keep a notebook with all the information ( reports, etc) you will get, contacts and phone call information, etc. You will need this stuff and so much easier if you can’t find it! I had to call my center yesterday and did not get a call back which sadly I expected and will call again today. Nope not easy but keep going one minute at a time. Lots of people here do understand what you’re going through even though our experiences are different. I hope you got better sleep and a good cup of coffee. Please take care of yourself. Thinking of you and hugs.

Puzzlewoman

Oh my, the Canadian healthcare system seems awful! If you lived near the border I’d just say go - but I think you mentioned earlier you dont.

Hugs to you!

Jadedjo

KCMC

Thanks. I don't feel worth it but that's a lifetime of my self esteem being put down.

KatyK

Thank you.

Sadly I am unable to have any caffeine due to my reflux issues and I miss my birthday frappacinos from Starbucks deeply because of it. I don't have anybody so I'm dealing with things on my own with some support from a counsler and a nurse. I haven't got a call back today either and I'm also not expecting one.my remark wasn't vicious but it did have some bite to it and I'm tempted to call back and say "if you don't want snark maybe don't leave your patients out hanging with no direction or in my case a surgery date." We are not numbers on a page we are people who are scared,anxious and are newly diagnosed with cancer. We have feelings and in my case the majority is negative.

Puzzlewoman

Thank you,

Sadly I have no money whatsoever so even if I was close I couldn't afford it. 

KatyK

Keep advocating for yourself. Ask nurse and counselor for help. Sorry you can’t have coffee. Don’t know your coping mechanisms in life but pull them all out and use them - a lot! I was diagnosed stage IV a year ago and I found that I use the same coping mechanisms, they just have be done frequently and it takes longer. I like to be outside, exercise, time with friends/family, watch a silly t.v. show, meditation, use whatever works for you. It is a tough journey but it does get better over time. Peace, love, and hugs

Jadedjo

Thank you. Will try.

KatyK

Keep trying, every minute, every day. You can do it

Yaniza

Hi Jadedjo,

I am Canadian and my experience with the medical system, from diagnosis to now, has been very good... aside from the terror around learning that I have breast cancer.

I hope this is just a rough start for you. Private message me if you like. I'm in Halifax NS.

Have you been assigned a nurse navigator? That is normal here.

In Nova Scotia we can call 811 and talk to a nurse practitioner anytime of the night or day and they would have information about who you might be able to call in your area for support. I hope that's a national program but I must admit I've never thought about it before I have just always taken it for granted here.

There is also the option through the Izaak Walton Killam Women's Center here in Halifax to see a psychiatrist for the emotional burden that breast cancer bestows upon us. I took advantage of that too.

Like I said I hope this is just a rough beginning and things smooth out very quickly for you. Right after diagnosis is a crazy difficult time . I remember it well.

Thinking of you.

Jadedjo

Yaniza

Thank you.

I think it differs province to province. The care in my province I was told was supposed to be better then this so now I'm wondering if it's classism. Im in the lower end of the poverty scale one bad financial issue away from homelessness so I'm not deemed all that important in the grand  scheme of things.ive been told by strangers who found out I'm on disability more then once before all this that I'm just a burden on the system since I can't seem to support myself. I have also pointed out repeatedly if I had their health and a body that didn't betray me with new chronic illness every time  I seem to be getting anywhere in life I wouldn't be a drain on the system.

 I haven't been that lucky for over 15 years. There's a reason this cancer is the last straw for me. I been fighting to get my life back for close to two decades now and just as it was on the edge of happening I got diagnosed with breast cancer. I'm done fighting to survive. A person can only be strong for so long eventually you just get too beat down by it all.

Since  we are the main cancercare hub for the entire province it is overworked and underfunded but I'm starting to feel something else is at work here because I have heard stories of people getting surgery within 6 weeks of seeing the surgeons. I'm past the two week mark of seeing the last one and still don't have an actual surgery DATE never mind the surgery itself.no call back either from my phone call wensday.

I will be trying again tommorow with a "I'm gonna need more then a week or two notice for the surgery  I have to contact people to see if I qualify for the services and need the date so they can figure it out. "

It doesn't take two weeks to find a date,either there is a space open or there isn't. So somebody is screwing up somewhere or ignoring my paperwork.

We don't have nurse navigators but my counsler referred me to a nurse that runs  the pre surgery reconstruction clinics and works along with the breast Health center and asked her to take me on due to my lack of supports in the city.

All the local stories I have heard they felt supported and like somebody cared during their fight.

All I feel is ignored and abandoned.

Blessed be.

Icietla

Turn it up, please.

https://www.youtube.com/watch?v=7U2E-In0DDg

https://www.youtube.com/watch?v=mGloCCwyAK0