Step One - Check

I'm almost 2 weeks post mastectomy.  All in all, it wasn't horrible, but it hasn't been a walk in the park, either.

On surgery day, while waiting for my ex husband to come pick us up (amicable divorce, long story), nerves got the better of me. I'm glad I hadn't been allowed any food for hours beforehand (no more detail should be needed here).

Everyone was tense on the drive over, probably feeding off of my energy.  The directions on the hospital paperwork skipped a step, and after sitting in a waiting room with a few expectant grandparents and fathers for 30 minutes, I began to panic that we weren't in the right area.  We weren't.   Well, we WERE, but no one had told me there was paperwork to pick up first, several floors down.  Once I realized that, then I panicked because time was ticking away wasted.

After sorting it out and following the blue train to the red boat and then the green wave back to the 3rd floor, I was already done with patience.  Anyone who has been to that particular hospital will know what I mean.   

The staff were running behind, my daughter was getting antsy (usually followed by mouthy), my sister was a wreck and the ex was nowhere to be found.  I was getting annoyed and dumbfounded as to how the first surgery of the day (mine) could be "backed" up when my surgeon and anesthesiologist were there and ready to turn me into a one-tit wonder.  

The meltdown came when the ex walked around the corner with coffee and bagels.  In hindsight, I'm sure he thought I was already in surgery.  However, after many married years of him doing many things like that, it was the tip of the iceberg. I had really hoped to keep my mascara intact for the surgery, but the coffee scent undid me. And yes, I went into that OR looking as good as I possibly could, because screw cancer.

By noon, I was home and settled on the couch.  There wasn't much discomfort, but I was pretty medicated so probably just hadn't felt it as much.

Three days later, I felt it.  I mean, really felt it (and still am). I had assumed I would have some pain at the main surgery area, but haven't so far.  The pain I do have is under my arm and feels like I'm being pinched, stabbed, burned and beaten simultaneously. 

I have no information on how the surgery went, if there was anything of concern etc.

My surgeon is an excellent slicer/dicer, but he appears to not know how to "people".

He also wouldn't prescribe anything for pain and said Tylenol should be enough.

He was wrong.  Very wrong. 

I see him in February for the post op appointment. When he's done talking, I may jusk kick him in the man parts till he drops and then toss him a bottle of Tylenol.  

My next blog post could be from jail. 

The Countdown

Well, two blog posts in one week.  That's new.  Usually it's months, sometimes a year between posts. It's 5 a.m. and I can't sleep.  The thoughts in my head needed to come out, and this seemed like a good time to write.

It's 26  hours till surgery time, and I still don't feel ready.  I'm prepared in the sense of button-up clothing, pain med stockpiles and chore schedules for "the others", but I'm not ready for the rest of it.

My boobs never meant much to me before, especially since I'm not particularly well endowed in that area.  Now, however, they mean much more to me than they ever did.  I'm not sure how to navigate only having one.  I never really had a ton of cleavage, but now I won't have any at all.  What's going to catch the crumbs? Where is the boob sweat gonna go when I have a hot flash??  How uncomfortable is that damn prothesis going to be? How will I wear strapless anything when they don't make strapless bras for prothesis boobs?  All things I took for granted, and seemingly superficial, but all valid questions for any woman.

I'm at the mercy of the unknown right now.  I have a fear of something happening during surgery.  I am worried that the surgeon will find more than he planned on finding once he starts.  Scared that there may be cancer in my lymph nodes.  Terrified that this may be bigger than expected.  Holding my breath that the new pain in the other breast isn't also cancer.

Fear is new to me, and I don't like it.

I'm not someone who is accustomed to feeling fear.  I've been through many curveballs in life that brought worry, sorrow, challenges and heartache.  Nothing really brought fear, though.  Until now.  I don't know how to navigate it and calm myself and it sucks

In hindsight, I probably should have made some time for counseling, but I didn't.  With all of the preparation, appointments, paperwork and Christmas, there just wasn't a lot of free time for that.  So, now I have 26 hours to counsel myself for this new reality.   Too bad I can't bill for that, those people make a good penny.

Once again, today I will be leaning on friends and family to keep me away from the ledge.  It's a long drop down, thankfully they all carry a lifeline rope.

2019

It's the last day of 2019.  On one hand, I can't wait for this year to just end.  On the other, I wish I could just freeze time to this day.

 For the past decade, I've fervently hoped, every New Year's Eve, that the next year would be better.  It had to be better.  Yet, each new year brought more heartache and hardship.  Some people say those were challenges, I prefer to say they were bullshit. 

The part of me that wants 2019 to end is the part of me that wants to get the next chapter of my journey started.  I want the stabbing, constant pain where my tumour is to stop.  I want it gone and I want the anxiety to end (even though I know that it won't).

The other part of me wants to stop time and go back to being normal.  Back to when I knew nothing about breast cancer. Back to not being a total hot mess of an emotional trainwreck.  Back to when I didn't fear every single little ache or pain.  Especially back to when my own mortality didn't invade every waking moment. 

I don't want to be part of the Cancer Club, even though all of the other members that I personally know are the most extraordinary people in the world.  Thanks for the invite, but I wasn't looking to sign up.  2020 means that my membership is renewed for it's first annual cycle.

2020 will be the year of "the uniboob" for me.  The left one will go just 2 days shy of it's 55th birthday.   The 2020 birthday won't exactly be a hoot.  Incisions, drainage tube, pain, and whininess aren't great selling points for a birthday fete.  Prostheses, ugly bras, changes to my usual wardrobe choices, and tissue stretching exercises will be on tap for most of the winter.  Treatment, likely in the form of chemo (because why change my luck now?) will take up the spring into summer.  Hair loss, pale skin, nausea and general yuckiness for Spring Break.  Whoo hoo!! 

I imagine that 2020 will be the start of looking over my shoulder forever.  I know that I will never have a day that I won't worry about recurrence, because I'm a worrier by nature. It's what I do (and I'm damned good at it).  I'm also a planner. Constant worry creates solid planning and preparation skills.  This one though, I didn't plan for.  I had worried about many things, and prepared for my many imagined "what if" scenarios, but not this.  It was never on my radar.  So it stands to reason that because I can't plan or control the outcome, I'm going to worry from now till eternity about cancer.  I've already become a hypochondriac. In the last month, my swollen foot meant that I definitely had diabetes; my migraines became other tumors; my acid reflux turned into an esophageal blockage....and on, and on.

This will be the year where I lean on my beautiful daughter, instead of the other way around (which it should be). She has already become my rock and this coming year won't be easy on her.  That's not what I wanted 2020 to be for her and it breaks my heart.

To sum up, 2020 terrifies me.  The term "Happy New Year", in my case, kind of seems a bit silly.  I'm sure as hell not going to be particularly happy.  I can guarantee my family that I'll likely be more of a snarky, sarcastic grouch than usual, and that's saying something.  I can guarantee my friends that there will probably be long stretches of radio silence.  I'm going to need to retreat, and it hurts me to know that this will hurt some of them.

I don't want to let go of 2019 yet.  It was one of the worst years for me, but also one of the best. The bullshit of 2019 brought some good.  The best was the feeling of being loved. I honestly didn't realize how many friends I had, or that people can care as much as they do.  I've been touched by so many people that I still don't know what to do with that, and I can't thank them enough.  New friends, old friends and new old friends.  It makes a walk down Cancer Lane a lot less scary.

I can't stop the arrival of 2020 but I will ask it to please be gentle.  For once, can you please just enter and exit peacefully and reasonably?  I don't want to have to hit you up the side of your head with my fake boob, but I will if you're a bitch.

My thoughts on Let's Talk

It's Bell Media's Let's Talk Day, but this blog won't be trying to spread it's message. It won't be sent individually to every friend, acquaintance, co worker, neighbor or near stranger in my contact list.  It won't be texted, messaged, snapped, or tweeted. No tagging, hashtagging or neon colored post background.  It will be quietly placed on my social media accounts, where very few contacts will even open the link.  That's ok though, this is my own form of therapy right now so it's more for me than anyone else.

I'm not a huge supporter of the Let's Talk Day, but I'm also not a hater.  As someone who has experienced mental health issues first and second hand for a good number of years, I'm somewhere in the middle on this initiative.  On one hand, I applaud the fact that a well known organization has tried to reduce the stigma of mental health problems.  On the other, I'm afraid it sends a false message that talking and asking for help will result in actually getting the help that you need.

I won't recount all of the failures and abysmal treatment processes that I've been exposed to because this is a blog, not a novel.  I will however, describe what I experienced today as I think that should sum up my thoughts on the topic.

Like so many others, I have suffered occasionally with mild depression and anxiety.  I am currently battling another round, and have been since November.  After Christmas,  I realized I could use a bit of counseling so that I could get back on track before it got worse.  Four weeks ago, I called my Employee Assistance Program to arrange an 8 week counseling plan.  The counselor they matched me with dutifully called me within 48 hours to schedule an appointment.  Not a bad start.

Two weeks ago he called to change my Monday appointment to  3 PM Tuesday.  I haven't seen him since.  Tuesday came and along with it messy weather and a migraine.  I called early that morning to reschedule, and left a voicemail asking him to call me back.  By Thursday, with no call from him, I left another voicemail.  Then another. On Friday I finally reached him.  By that point, he had no availability for a week and a half.  Today was my rescheduled appointment.

Now, part of my current issue is that I have suddenly become terrified of driving in any kind of  messy weather.  It's a long held anxiety, but one that I had overcome in recent years.  For some reason, it's back.  Today we had messy weather.  Today was my appointment.

Not wanting to go another two weeks with no support, as I will be in BC next week, I spent most of the morning worrying about how to get there without driving in the snow/ice pellet mix that had started after I drove to work.  Thankfully I have amazing coworkers.  I left my car at work and one work buddy dropped me at my therapists office, with arrangements made for my daughter to pick me up afterward and another coworker to drive me to work tomorrow.  Problem solved.

My therapist works out of his home with a separate office entrance.   The door was locked.  I rang the bell, no answer.  I called his number, no answer.  His car was there,  there were lights on in the house.  I rang the house doorbell, no answer.

So, I'm stranded in his driveway with no car to sit in or leave in.  It's now pouring and getting colder.  My daughter isn't scheduled to pick me up for another hour.  My sister doesn't drive much any more so I didn't want her venturing out in bad conditions to come get me.  My data plan is low, so I can't Google cab numbers.

I ended up walking a good 15 minute trek to the nearest grocery store and payphone.  I'm not dressed for this.  The sidewalks and roads are a messy, slippery mush of ankle deep snow and water.  I got about 10 feet before my trendy yet impractical boots were filled with water.  I think I cried for 3 blocks out of frustration, despair and self pity.

After exhausting every cab number to no avail (apparently they also don't answer phones), I finally called my sister to come get me.  By this point, I was unravelling and quickly.  Thankfully my daughter called and it helped bring me back down to a reasonable level of human. Enough that the grocery store security guard stopped eyeballing me.


During most of this ordeal I kept thinking to myself "it's Let's Talk Day.  But I can bet my ass that no one is talking about this kind of farce".  This kind of thing, my dear readers, is unfortunately more the norm than the exception when it comes to getting help when you need it.  It's sad, it's unacceptable and it's dangerous.  But that's what it is.


So, you can likely now imagine my thoughts on Let's Talk, at the moment.  While quite a few colleagues were sitting in Let's Talk presentations, I was navigating my cold, wet, tear streaked self to a phone booth to try to get home when I should have been spending that time getting the help I need. I certainly can't say it wasn't for a lack of trying (on my part).

Ironically,  the only part of me that stayed dry was my head.  Likely due to the Bell Let's Talk toque that I got at work and had shoved in my pocket for "just in case". If nothing else, their toque worked for me.

My Little Blog of Mistakes

Mistakes.  We all make them, because we're human.  Some of us make more than others, due to sheer stupidity, synchronicity, or plain old bad luck.  That's where I come in.  I have a fondness for writing and penchant for bad luck.  I have toyed with the idea of blogging again for a while, but a lack of subject matter kept holding me back. However,  I recently remembered something that I'd been told once about teaching what you know.  I'm going to hope that this philosophy also works when writing about what you know.  I know a lot about mistakes.  Therefore, I shall start a little blog about the mistakes I've made (some humorous, some not), and the lessons I've learned (don't get too excited, I didn't learn much).

As I wrote that opening paragraph, a little voice in my head said "you probably picked the wrong blog site, Dumbass".  I also heard "no one is going to find this blog, let alone read it", followed by "you're going to ruin your wet nail polish for no good reason".  But I digress.

This could well end up to be another mistake, but at the very least I will improve my typing speed and perhaps clear the clutter from my mind.  As a middle-aged woman, currently housing a young adult daughter and her main squeeze, their two geckos, a senior aged sister and her two shitzus and two cats, my mind can tend to get a bit cluttered.  So can my house, but that's for another blog.

I could likely go back to my childhood for mistake topics to write about, but I think I'll just save everyone the heartache and take it back about five years ago.  It's a good starting point, as it was right about that time that I started an entirely new life chapter.  I think perhaps the book was upside down though, because not much turned out the way I had originally planned my story.

Why five years back?  Because five years ago I became "uncoupled" (as Gwyneth Paltrow termed it), and the mayhem began.  So if you're willing, or have nothing else to read, check back frequently as I start to recant my tales of mistakes.  You'll either laugh, cry, or beat your head against the screen.  At the very least though, I hope you get some enjoyment out of this and maybe learn a little something from someone else's mistakes.

The Graduate

I have just seen the most beautiful young woman.  She is tall and lithe, elegant and stunning.   She radiates youth and happiness.  She is my daughter and tonight is her high school prom.

Looking at her, I am filled with love and pride, amazement and awe, and a little envy.   I love this girl with all of my heart, and have from the moment I first held her.
I can remember being unable to imagine her starting school, let alone finishing it.

I have watched her struggle, cope with more than she should have had to, and feel more pain than most kids do.  I have also watched her rise to every challenge and look life (and peoplw) square in the eye with a little bit of "I dare you".  She didn't always succeed at the challenges, but she always found the courage to face them.  I have always been proud of her for not giving up, and she can't possibly know how much I respect her for it.

I am amazed when I look at her and see glimpses of so many good  family traits, from both sides.  She has the physical features of both her father and I, fortunately the more attractive ones.  She has her aunts love of purses and impulsive change; my mothers love of baking; her paternal grandmother's feistiness; my Dad's creative abilities; her father's love of animals, and my sense of humour.  She managed to take a little good from all of us and mold those traits into an intelligent, talented, witty, soulful and beautiful package.  To me, that is an amazing thing.

Alice and the Rabbit Hole

I've written a few blog posts, and usually when there is a milestone to celebrate or a loss to mourn.  Never have I written with rage, frustration and sheer anger. Never have I written in the form of a story either. It's time for that though, so let's see where this goes. Keep reading and take the plunge with me, or not. Warning has been sufficiently given.

Those who know me are aware of the things I'm passionate about. To name a few, I'm very passionate about help for Alzheimer's and Dementia patients and their caregivers.  I'm passionate about animals, the arts and design.  I'm particularly passionate about mental health issues, especially for children and teens.  This is where the rant, and the story comes in.

I am so very tired and frustrated of dealing with a system that is so irrevocably broken that I fear there is no hope of it ever being turned around.  It's too far gone now. I'm tired of hearing of people who have fought for years to get help for their children/siblings/students only to lose them in the end.  I'm tired of watching these kids get tired of waiting for help, and frustrated beyond belief when I keep seeing ads and pamphlets about the "outstanding" work and great strides that our provincial system has made around the area of helping young people with mental health issues.

I have fought with this system for years.  By "fought" I mean that I have tried to calmly explain, reason, and articulately express to countless "team" members the type of help that is required.  I have been driven to tears, raised my voice, slammed my fist down on one occasion, walked out of meetings and resorted to threats of media coverage. There have been letters to the local MP, the MLA for the riding (although not written by me, but rather my counterpart in this journey), and meetings with the head of Psychiatry at the local children's hospital to lodge a formal complaint.  This is the only forum left now.

Let me explain how this "system" works, for anyone who is lucky enough to know nothing about it, and indulge me by letting me tell you a story.  In the interest of tying this into the title, let's name the "fictional" patient "Alice".  The first thing that has to happen to start the story off is that someone must first recognize that something is going on with Alice. She is young, so it is unlikely that she can come forward with her issue, as she is unable to fully explain what she is feeling and thinking.  The next step is a visit to Alice's family physician who will do her best to decide whether Alice needs specialized treatment and will then make a referral through the local children's hospital Mental Health Department.  Now, this is where the story starts to go to hell.

Initially, there is relief that "someone" is going to help Alice.  After all, there has been a referral to the Mental Health Department, and everything her parents have seen and heard tells them how seriously these things are taken and that they've done the right thing by ensuring timely and proper assistance.  The relief slowly turns to bewilderment as they then spend months watching Alice suffer, and waiting to hear when that magical appointment date will be.

Then, one day they get that call that they've been waiting for.  Finally, an appointment!!!  Help will surely be quick and swift now.  Oh wait - no, this appointment is only to assess and determine whether a psychologist, psychiatrist or social worker is required.  And by the way, if Alice's parents happen to have given in while waiting and started seeing a private psychologist whom their child has started to make a connection with, well "sorry guys, we can't help you.  It's either us or them, so you'll have to drop the private doctor".  Well, if they've still got any belief in the "system", then they play by the rules and drop the one person who has been at least trying to help this situation.  Then they wait for another couple of months after the assessment, because there is a very high patient/psychologist ratio, and the waiting list is quite lengthy. They must wait for a spot to clear.  In hindsight, it's scary for Alices' parents to think of just HOW those spaces get cleared.

So, the family basically just watched the better part of a year go by.  It's maddening and frustrating, and yet, they aren't the ones needing the help.  Imagine what it's like for Alice, especially when she isn't yet an adult and she was raised to trust adult professionals to help.  It's hard to explain to Alice why it's taking so long. However, she has now been assigned a couple of professionals, so her parents do their best to convince her that the help is here now and it will all start to get better.  Little do they know that they are basically repeating the whole Santa Claus and Easter Bunny ruse again.

The relief of being matched up with the right professionals is quickly short-lived. They got past the waiting list, so things are surely going to start progressing, right?  Wrong.  First off, Alice needs the right match and not just in the specialty sense.  If the person assigned to her can't seem to find footing because there's something missing in the connection between them, then she's no better off and possibly worse off.  If the professional in question can only see her once a month when clearly she needs to be seen weekly, well then she's in another bind.  Now, one may be lucky enough to find the right match early on, or be transferred early on to someone better suited, which is what happened in this story. So, she starts to make a little progress and then finds out that one of her team members is leaving to go head up a board of some sort or another, and the other is going on maternity leave, so she's back on another waiting list. Alice is now clearly finished with this and tells the staff that she's been feeling much better lately.  Do you see where I'm going with this story yet?  Are the words "tiring" and "frustrating" starting to make sense?

Be Alice for a moment.  You're not yet an adult.  On top of the issue of hormones, lack of confidence, the high level of anxiety you were referred for in the first place, you're now feeling let down.  It's become pretty clear that nobody really cares except your family.  Maybe you're being a drain on your family.  You're tired. Tired of being given the run around, tired of feeling this way, tired of having to tell your story to new people every time you turn around.  So, what do you think your alternative is?  Now it gets really messy.  You're rushed to the children's emergency department because you've voiced a "plan", or worse.  At best, you're there for a minimum of 2 hours before a crisis team worker sees you.  You tell them your history, what you feel, why you feel it.  This takes another hour.  Your family meets with the crisis team worker for an hour. Then you ALL meet with the same person again.  At this point, you're all unaware that this person isn't the one that can help you.  They are really just the clinical intake person.  Now you wait a couple hours for a psychiatrist.  The psychiatrist does a 15 minute assessment, extracts a verbal agreement with the patient that they aren't going to carry out any plan, and then they send the patient home for their worried and clearly over their heads parents to keep an eye on.

These patients may be young, but they are wise.  After all of those hours and no one reassuring them that they will look after them and map out a solid plan for hope or help, these kids will basically say whatever they think the doctors need to hear in order to let them the hell out of this place.  They're tired, more tired than when they arrived.  And the next day they are back there again to start the circle all over.  The lucky ones are, anyway.

Now, be Alice's parents for a paragraph or so.  You've just been at the hospital for almost 15 hours.  You don't get to meet the psychiatrist and talk to her - that's privileged between her and Alice.  You have no idea how much the psychiatrist has been told, or what they've been told.  All you get is a 2 minute face to face to be told that the Alice says she is "safe" now and there is no need for admission.  Really????  Seriously??? This is when an Alices' mother starts to distrust, get angry and lose faith too.  The next day is spent frantically making calls to the psychologist, the psychiatrist and the social worker. However, since the patient deemed herself good to go a couple of months ago, the file has been closed. They will need to be referred again by the family doctor.

The family doctor is booked solid for the next 2 weeks. Now the protective mama bear is pissed and causes a scene with the doctors' receptionist who then hustles her and Alice into a waiting room to save everybody more embarrassment.  The family doctor calls right away to make an emergency referral back to the same place Alice started. Three weeks pass, no appointment.  Calls to the center determine that no one has any info on the patient in question, get the doctor to send a copy of her file. Three more weeks. Finally, it's been 3 months and another incident and another phone call from Alice's mother, who is now starting to unravel herself.  The answer is that they've just now determined who the specialist will be, but he's booked until July.  This is May.  The word "media" is spewed out and lo and behold, he can see Alice in three days time.

Alice is now four years in.  She finally has the right team.  Things are stable, not better, but stable.  Then another diagnosis comes from left center.  This one is uglier, harder to understand and cannot be formally diagnosed until the age of 18.  However, there are medications that can help.  And there is a program that might help - it's 3 months long and there's a waiting list, but it might help with a couple of the issues.  Okay, then.

It takes 2 months for the paperwork to be done.  Somehow the appointments get sidetracked and the paperwork doesn't get finished until September.  It doesn't get sent until October.  The first meeting isn't until December.  In the meantime, another incident and another foul up.  EHS dispatch somehow or another decides to route Alice to the adult hospital, even though the paramedics are pushing for the children's hospital where she is being followed.  This doesn't go well.  Alice and family are left waiting in a hallway for 3 hours before being seen by a nurse or doctor.  The distress and depression are now giving way to anxiety and anger. Another 3 hours in an emergency bed and things are getting out of hand.  So much so that the charge nurse wants the patient sent under escort to the hospital that should have been picked in the first place. Three more hours at the second hospital.  Alice (who was originally in a state of despondency), by this point is now angry and being treated as a threat.  No frigging wonder.  Other than the paramedics, Alice has not been shown any compassion, respect or psychological treatment whatsoever all day long.  It's now 11 pm.  She says something very rude to the resident who then complains to her superior.  The superior is the psychiatrist on call.  He berates her, calls her disgusting and signs the paper to get her out of "his hospital".  At no point does he make any attempt to meet her parent who has been waiting for hours outside. Alice saunters out of the hospital doors unattended and no one bothers to see where her parent is (she was right outside the door, but that's not the point).  Basically, they've sent Alice home in a worse state then when she arrived.  Again.

A formal complaint is made by her parent.  A protocol is put in place for any future treatment for Alice. EHS has been sent info on the patient and now know where to route any future emergencies. An apology by, and reprimand for both the resident and psychiatrist on call.  Okay, progress?  If only.

December, and the first appointment for intake to a three month intensive day program of therapy.  Doesn't go well.  There is too much mistrust on the part of Alice at this point.  A couple of weeks of convincing, and it is agreed upon with the staff that this will be started in stages.  Instead of feet first and full immersion, she'll start an hour or so at a time, with a tour and meeting the staff etc.  Once the comfort level is there, she'll do a whole day and so on.  So, today was supposed to Alice's first whole day.  If you've read this far without losing interest, you should be able to guess that another ball was dropped squarely upon Alice's head.

The first thing (or so I'm told) was that a nurse met Alice and parent to fill out paperwork.  An hour worth of paperwork.  When the question was asked what the paperwork was for, the answer was that this was the start of the three month program so it's part of the "admission".  This is when things started to go south. When the social worker who had already met with Alice and her father twice (for an hour each time), and spoken several times to both of her parents finally showed up, he introduced himself.  He had no recollection of ever meeting her before.  No recollection of the agreement made.  No recollection of the phone conversations. No knowledge (anymore) of the tweaking done by his colleague and Alice's  team worker to fit this program to her needs.  Nothing.  Zip.

So Alice has now decided to opt out of this program.  Who can blame her?  Hopefully her story will have a happy ending, but it seems that she will be doing most of the story writing herself, with little help and lots of fumbling from those who have been touting the great strides made of late.

Sheer madness. No wonder most of the Alices in this world want to stay down in that rabbit hole.

And that, my friends, is the end of this story.  For now.