The Other Stuff

Last week I wrote about the things no one tells you about having cancer surgery.  It was mostly about the big issues like pain and the lack of counseling available.  However, there are other things that no one prepares you for, on a smaller scale but equally important.  These are things I had to learn on my own. Hopefully none of you ever find yourself in this situation, but I've started a Hints and Tips Guide for reference. 

The biggest thing I've learned is to pick your caregivers wisely.  They will be doing pretty much everything for you in the first couple of weeks after surgery.  I'm fortunate enough to have two of them, which turned out to be a good thing as they have been able to trade off on skill and patience levels.

One of my caregivers does not cook. She did tell me that before she moved in, but I thought she meant she just didn't like to cook.  It's a good thing she is the one who is in charge of the more personal care and not the feeding portion.  She's great at the nursing side of it, thankfully. 

My other caregiver can't do any of the bandage changing and the like at the risk of passing out, but she does like to cook so I didn't die of hunger.  The days that she had to go to work were iffy on the meal front.  There was one particular day when  I really thought that starvation would do me in long before cancer got a chance to.  Fortunately, my BFF showed up with Macdonald's, for which I will be forever grateful.  Somehow, she just knew.  If you have more than one person looking after you, check their skill sets ahead of time to make sure everything is covered off.

Another suggestion for the recuperation stage is to pick an easy hairstyle.  The caregivers will be weiding the hairdryer, so simple and short is the best bet.  Although my hair is already short, it does require a little more than running a hairdryer across it.  I spent many recent days looking like my hair gave up part way through the process.  In hindsight, I think they may have been the days when I wasn't the best patient.  The "homeless look" seems now like a caregiver revenge tactic.  Stay on the good side of the person drying your hair. 

Should you live in a multi floor house, an intercom would be ideal.  I don't have an intercom, so I improvised with a bell that another friend lent me.  I can't say that the bell was welcomed by my family, but it did the trick.  In hindsight, I shouldn't have performed response time drills with it before the surgery as they were quite over the bell by the time I actually needed it.  Go with an intercom if possible, or move to a one level home.  My next surgery could be a bell removal, so don't do what I did.

I would also advise having a quiet zone to go to.  Over time, you and your caregivers will need a break from each other.  Probably not within the first 48 hours, as it was in my case, but at some point during the first couple weeks.  I'm a bit of an introvert when it comes to my personal space and have never felt the need to be constantly near other people, so I didn't last long before trying to escape the company.  I don't like being hovered over, especially when playing solitaire, yet it seemed like there was someone 2 feet from me constantly.  It was difficult for me to be quietly polite about that, but I managed. Especially since I knew that hurt feelings could cause disastrous hair styling results for me and a sharp decline in meal presentation.  I'd suggest enforcing quiet hours from the start. 

Finally, go with the roller coaster of emotions.  My emotions have been running amok and it's not unusual for my moods to change faster than a Nova Scotia weather forecast.  I can have sadness, fear, relief, anger, frustration and defeat all in a 30 minute time span.  No amount of consoling, comforting or reasoning seems to prevent the multiple meltdowns, so you're basically stuck riding it out.  Stock up tissues and alcohol. 

One more thing - stay medicated, my friends.

2021

Well, here we are at the start of another year.  I'm quite certain that the entire world was eager to usher 2020 straight out the door and embrace the hope that a new year brings.

It's been an unprecedented, cruel and surreal twelve months for many people.  For myself, it was definitely a long year that was often filled with grief, fear and uncertainty.  

I spent last New Year's Eve alone, worrying about my upcoming mastectomy, worrying about the prognosis, worrying about my ability to keep a roof over our heads, and worrying that maybe I was forgetting to worry about something else.  I spent this New Year's Eve alone as well, as most of us did. The difference was that I didn't have a thing to worry about.  Best New Year's Eve ever!

This past year brought a lot of tragedy, but it brought some good as well.  I realized just how much my friends truly cared about me, and they overwhelmed me with their love.  I had constant visits, calls, texts and deliveries last January and I truly believe the love helped me in my healing.  My mental health also got a boost from all of the good energy I was surrounded with.  

I lucked out in the cancer department as well, and the sense of relief overshadowed all of the other 2020 bullshit.  I may be missing a breast now, but that's a small price to pay in my opinion.  I belong to a few online mastectomy groups and reading the stories of other has given me huge appreciation and respect for what some of these women have gone through.  My own battle was no walk in the park, but compared to many other breast cancer battles, I really did have luck on my side.

This week will mark my first year since surgery.  Four more years to go to be considered cancer free; one more to go before I'm allowed to get my tattoo, and 9 more years of medication.  Not that I'm keeping track.  

My family is keen to celebrate this milestone and have already stocked champagne in the fridge.  I'm not quite as keen as they are to have a celebration of any kind. I'm terrified that being overly optimistic or celebratory may jinx things.   I realize that may sound crazy, but it's one of my lower levels of crazy and therefore, perfectly justified. 

From the moment I heard the word "cancer" in my diagnosis, I've been purposely not getting too excited about anything.  I'm content and I'm happy, but never excited.  I'm far too aware that at any time the rug could get pulled out from under me, so it feels wrong to be too optimistic or celebratory just yet.  If I make it to the 5 year mark, that's when you'll see me excited.  If I get to 10 years and no longer have to take medications that kick my ass on a daily basis, you'll see me ecstatic. 

Until then, I'll continue to go with the flow.  Very cautiously optimistic, yet still scared enough to do anything to mess things up.  I'll put up with the side effects the best that I can, but I'll apologize in advance to those who need to be around me.  That stuff really does kick my ass.

Welcome 2021 ! Please come in, sit down quietly and don't touch anything.  

6 months in

It hardly seems like it's been almost six months since my surgery. I've had that time to recover, reflect and regroup and to connect with people I haven't seen or talked to in a long time.  The many phone calls I received and the almost nightly online chats were a very welcome distraction.  The conversations kept me going and made things a lot easier to manage and a lot less lonely.

It seems though, that inevitably, somewhere in each conversation I'm asked "so, how are you doing"?  My standard answer to that is always "I'm doing okay", because in the grand scheme of things, I am. Generally, the follow- up question is about cancer and how I'm dealing with it. Again, I answer with "I'm handling it okay", because I don't know what else to say.

It's difficult to verbally impart how I really feel, as it's quite confusing.  For the most part I really am okay, because I'm still here and still standing.  On the other hand, I'm not totally okay because I'm living with cancer. It's a bit of a conundrum. Some days I'm better than okay, some days I'm not.  I have calm days, trainwreck days and self- pity days.  If I find myself confused at that, there's no way I can expect anyone else to understand.

I can't explain that there's this feeling of perpetually walking around a land mine, because I am constantly afraid of recurrence.  It's hard to work that into a conversation. Besides, my therapist tells me that's a rather unreasonable way of thinking, so I just don't say it.

I recently came across a blog by another cancer patient that validated this feeling.  She described her fear of recurrence  like having a gun pointed at the back of her head. There are equal odds whether the gun is loaded with another cancer bullet, or if the safety is engaged. Like a chant, it whispers "Go live your life, pay no attention to me. Do all the things you'd normally do. I'll just quietly stay right here. I may go off, I may not. But don't worry about it. Much."  I think that's the most accurate description that I've heard so far.  Again though, it's not a great conversation starter. So I don't say it.

When I'm asked if things are getting back to normal, I usually reply with "pretty much".  But there is absolutely nothing that's normal anymore.  The side effects from my medications aren't normal.  The surge of emotions that suddenly attack me without any warning aren't normal.  I can no longer physically do some of the things I used to, and watching other people carry out my tasks certainly isn't normal.  I have a drawer full of prothesis breasts, which is definitely not normal.  None of these things make good phone call topics.

Then there's the next most asked question "you're going to get reconstruction later, aren't you?".  I have no desire to undergo any unnecessary surgery in the future. I've thought a lot about this, and it just doesn't seem like it would be worth the process at this stage of my life.  I'm leaning toward having my daughter design a really cool, bad-ass tattoo instead. So, my answer to the question is "I'm not sure yet", because people don't understand why I would turn down the chance to "feel normal" again.  Although it's mostly my guy friends that don't get it, so there's that to consider, I guess. 

. 

The other thing I get asked a lot is whether I am considering being an advocate for breast cancer awareness.  I have no intention of it.  I've advocated, fought and educated for too.many other close-to-home illnesses, I'm not interested in doing it again.  I also not up for verbally explaining that to anyone, so I don't tell them.  I just say "we'll see".

I'm starting to feel a bit guilty fibbing with my answers, but it's just too difficult to explain some of these things.  It's easier to give the expected answers than to reveal the weirdo that I truly am.  

These Tears

I've never been much of a crier, since I never thought that tears did much good in the end.  I'm not saying that I never cried, I just didn't do it often or easily.

I could always count on one hand the number of times I cried in the run of a year.  Yet, it's only the end of April, and more tears have escaped my eyes this year than I can number. I still don't find that they do much good, but I'm unable to stop them.

In the past 6 months, my emotional armour has been assaulted to the point of breakage.  There had already been a few dents in that armour, but one doesn't live half a century without a few dents.

The latest barrage of assaults took those dents and punched holes in them.  From an unexpected cancer diagnosis and mastectomy; dealing with life in the new COVID era; to the shocking killings of 22 innocent people in my province, tears were shed in abundance. 

Cancer softened me up some, enough to allow tears on a  more regular basis. The medications cause emotional swings, so that also contributes to the crying. And I currently hate my hair.  My armour didn't stand a chance against all of that.

Tonight's tears are different. As I write this, my eyes are again filled with tears. Tonight's news of a downed Cyclone from HMCS Fredricton has my heart in tatters.  There is no confirmation yet of the outcome, but I know each and every member of that Air Detachment, and consider many of them my friends.  I am worried for their well being and that of their loved ones. Tonight I can't hold the tears back, so I won't even try. These tears are unstoppable anyway.  I cannot fathom the thought of an unpleasant outcome, yet I can't discount the possibility. 

So tonight, I will cry.  For the friends that I care about, for their safety, for their souls. This time, I know I'm not crying alone. 

The Best Outcome

Late last week, I received the news that I will not need chemotherapy for my cancer treatment. I'm not sure what the oncologist had tested for, but whatever it was, my numbers were low enough that chemo wouldn't be of any more benefit than the immunotherapy treatment. It's a lot easier to take a pill than go through chemo.

As a Capricorn, it's often hard to find my "inner child", but I literally skipped down the sidewalk of the hospital that day.  My sister was several feet behind me, unsure of whether to join me or pretend she didn't know me. Fortunately she chose the former.  

The relief that I felt is indescribable. I'd gone into the appointment expecting the worst and ended up with the best outcome I could hope for.  For the next five years, my chances of recurrence will be slightly higher than the average person, but the specialists seem very pleased with how everything has gone so far.  I can't explain how devastating the thought of losing my hair was. I know that's not what the big picture was about, but I'm really happy I don't need to endure that.

I still have a lot more to deal with, but knowing that chemo isn't included in that is a huge boost.  The immunotherapy drug is causing a few inconveniences like nausea, tiredness and hot flashes (on a scale I didn't realise existed).  The nerve pain medication causes fatigue as well, but it's starting to work and gives me plausible nap excuses. Overall, none of these things are insurmountable and my hope is that it all eases up as my system adjusts.

My return to work will have to wait a bit longer as I'll need to have frequent lymphatic massage appointments to help with the edema, and weekly physio to regain full range of motion in my arm. There's also the counseling sessions to help me deal with the new reality of my life, but I think these are all pretty good trade offs for the chemo. So for now, I'm too busy to go back to work.  

This outcome (so far) makes me feel very lucky. Anyone who knows me well also knows that my name and "luck" usually are never in the same sentence.  This time, luck was on my side. From the initial pain that I shouldn't have had at that early stage, to the fact that the tumor stayed in situ and the break on treatment, I truly feel like I had a protective force around me.

Aside from luck, I believe that positivity manifests what is needed. I'm not known to be an overly positive gal when it comes to my life, but I really had a lot of backup for this. The abundance of positive messages, texts, gifts, visits and support from my huge army of friends and family played a big role in getting me through the hardest days I've ever faced. There's no way I could have stayed intact if I'd battled this alone, thankfully I didn't have to. I love and appreciate each and every one of these friends more than they will ever know and will never forget their kindness. 

Now if someone could find me a mask, some Purell and a roll of toilet paper, my damaged immune system would appreciate it.  The only Corona anything that I want to deal with is the kind in a bottle that goes well with a lime wedge.

The Good, The Bad and The Ugly

My post surgery appointment went amazingly well.  The tumor ended up being half the size of what appeared on the mammography images, and was only 2 centimeters.  No lymph nodes were invaded and no other surprises were found during surgery.  Radiation is not necessary and I appear to be a good candidate for hormone immunotherapy rather than chemo.  My oncologist will make the final decision on that later this week. She has opted to send a pathology sample to California for further testing to ensure that immunotherapy will be enough. Better safe than sorry, so my fingers are crossed again.  That's the "good" part (except for the agonizing waiting).

The "bad" part is a little more complex.  I ended up with neuropathic pain from some nerve damage under my arm, but that is not uncommon with lymph node removal.  The meds they gave me for that ended up causing fluid buildup under my arm, and I'm now on medications to combat this new wrinkle in recovery.  My nightstand is covered in prescription bottles and it's messing with my feng shui.

There is no way to accurately describe the pain from fluid buildup, but it's almost like the skin in that area has third degree burns.  Add in the 24/7 nausea from the nerve pain medication, and the stabbing pain in my armpit from the nerve damage and you may get the picture. 

Honestly, I'm already tired of all of this post surgery nonsense and pain.  I really can't envision having to also endure chemo.  I've had seven weeks of nonstop pain, and I'm ready to admit defeat.   I just can't see myself being strong enough to go through the effects of chemo.  I'm already wanting to just say "to hell with it" and take my chances.  I won't, but it's tempting. 

Don't get me wrong, I'm truly grateful for the good results, but my "Eeyore" tendencies have pushed my mood as far down as it can go. 

The ugly part is that I'm still struggling with the new normal that my life has become.  I know that adjusting will take some time, but I'm impatient to just feel like "me" again (and a little uncertain as to what "me" actually will be, because it sure won't be the same).  

I'm also struggling  with what I want to do when this is all over. I enjoy my job and I miss it, but I really think I'd like to do something where I can help people and make a positive difference to their day.  I no longer seem to have the wherewithal to spend my days doing the same things over and over, and feeling no sense of accomplishment.  This has been weighing heavily on me, and it's difficult to make a decision between financial security or personal happiness.  

Between the ongoing physical pain, the emotional back and forth and the mental worries about my future, I feel like I'm in the middle of a gunfight armed with a dull butterknife.

I envision this good, bad and ugly as a showdown between mind, body and spirit.  It wasn't one of the things I'd expected to battle, but that's where things are these days . I arrived at this showdown highly unprepared and woefully unarmed.  Hopefully I can dodge the bullets until I can at least find a better butterknife. Or water pistol.

What They Don't Tell You

These past few weeks have been a hell of a year.  There are a lot of things that no one tells you about cancer, surgery, and the multiple effects they can have on ordinary life.  A good friend of mine who has been on his own ride with cancer, did warn me at the beginning that I'd either not know enough things or I'd be inundated with too many things I don't need to know. He has his own blog (The Cancer Sucks Chronicles) and encouraged me to start writing on this site again as a release of sorts, so here I am. Blame him.

Once more, I feel the need to complain about the pain side of the surgery. Partly because I'm still furious about it and partly because I feel entitled to a little whining. I wasn't expecting this level of pain, and wasn't led to believe it would be as bad as it has been.  "Minor discomfort around the incision" is what I was told to expect. That misleading statement was not only wrong, but somewhat cruel.  There should be an entire handbook dedicated to the potential pain, and "minor discomfort" is definitely not how I'd describe it.  Mind you, the way I would probably word it would likely have to be heavily censored. 

I truly believe that with any surgery, and especially one where you lose a physical part of yourself, there should be a longer and more frank discussion around what to realistically expect.  A little counseling session on the pain level that may occur and some guidance on how to cope with it should be standard practice. It would also help to have the surgeon and family physician in agreement on pain management methods before the surgery.  It could save the patient some long days of unnecessary and unreasonable pain.

A conversation on the emotional impact of cancer should also be part of a universal  care plan.  Some blunt talk about the feelings you'll likely have about not just having cancer (which is a huge shock to start with), but things like seeing your body for the first time after the bandages come off.  I thought I was more prepared for that than I actually I was. I think if someone had talked with me in detail about how things might look after surgery and to expect that first glance to be devastating, my meltdown may have been gentler and shorter.

 I wish someone on the medical team had mentioned that emotional anguish is the other half of this battle. It may have made me feel a little less defeated. I mean, I knew I'd only have one breast (obviously) but the puckered stitches, swelling and bruised skin looked like a weird science experiment.  I didn't expect that, and hadn't really thought a lot of it before the surgery.  Some warning would have been nice. This is going to take a very long time to get used to and for once, I'm really glad that I'm unattached.  I may never be comfortable enough with myself to ever again consider any other relationship status. No one mentioned that, but they should have.

A hint at the possibility of workplace separation anxiety would also have been beneficial.  After working full-time for 38 years, I don't know how to be at home for 6 months and keep my sanity.  I honestly didn't think I'd miss my job so much, and that being out of the loop on everything would feel so isolating. It's only been a month, but I feel like I don't belong anymore, even though I know that's not the case. At least I hope it isn't.  No one talks about that, either. When you spend more than half your life doing something and then suddenly you're forced to stop, it's hard to not feel cut off.  It's like someone stole my identity and it's hard to deal with.  This also was never mentioned, but it's another thing that should be.

I've spent many years challenging the lack of mental health professionals and services in Nova Scotia. I've seen too many failures and tragedies in the system and I now see another shortfall. Preventative counseling -  it should exist, yet it doesn't.  Physicians and surgeons know that cancer and it's baggage is likely to take a huge emotional toll on their patients, yet we don't have enough mental health professionals to be an integral part of the care team. It's also been proven that with a good frame of mind, patients will more easily recover from the physical trauma of surgery.  It's kind of tough to have a good frame of mind when you're dealing with this, though.  I'm thankful that I have friends who themselves have been through this to help guide me. I'm thankful that the physical things were dealt with very quickly, but I'm disappointed that an equally important part of this process wasn't addressed at all. Not before, or after the surgery. It seems wrong to me.

Fortunately, I have this forum to get things off of my chest (no pun intended).  Even though I have my family and some very good friends for support, who have all offered to let me vent to them, I won't. I couldn't anyway,  because there are too many times that I can't explain how I feel, probably because I don't even understand it myself. I don't want any of them to feel bad because they can't fix it, and I've often been on that side of the coin so I know that would happen.  I fear they would get very tired of me, very quickly. Besides, everyone has their own bullshit to deal with, they don't need mine piled on.

So I think  I'll just vent here because it's the easiest way, and if I'm boring anyone, they can stop reading at any point and scroll to something else. I won't even know, no harm done. 

As mentioned earlier, blame the guy who encouraged me to write again. 

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.

Long goodbyes

I've never been one to drag out goodbyes.  I'm the type that will drop someone at the airport door rather than go in and wait for them to leave.  I'm the one that doesn't give a last backward glance as I'm leaving.  I just don't like saying goodbye to anyone.
Yet, here I am again saying goodbye to someone I love dearly. This time it's my mother, who is losing her battle with dementia.

Just over two years ago, I sat in the same building saying goodbye to my father who lost his own fight with the same illness.  At the time, I couldn't envision having to do it again even though my mom had already been diagnosed.  I guess I thought I'd have more time with her.

My dad left my world very quickly.  Although he'd been ill, once he was declared palliative he was gone within hours.  Not so with my mother.  My sister and I have been by her side for 6 days, watching her slowly fade from us.
And it really is slow.  She has remained in the same unresponsive condition for the last four of those days.  She is stubbornly clinging to life, and it is heartbreaking and painful to witness.

We always used to say that my father was the stubborn one, and blamed it on his Cape Breton roots.  Whenever I would dig my heels in on something, I'd be told I was just like him.  Well, now I'm thinking that some of that stubbornness and determination  just may have been passed along from my other parent.

Even in her unresponsive state, she clearly knows what she wants and what she doesn't.  When the care team puts pillows behind her legs or between her feet to prevent pressure sores, my sister and I make a bet as to how long before she wriggles around enough to get rid of them.  Her average is 15 minutes.  She always hated too much stuff around her sleep space.  When it's time to turn her onto her side we give each other a knowing look  because we know she will manoever her way onto her back again.  Average reposition time of 4 minutes.  She hates having those sponge things put in her mouth to prevent dryness, and clamps her lips shut as soon as she feels it.  She is one determined lady. 

In the last six days, my sister and I have had a lot of time to reminisce.  It's funny how we can both have such different memories of the same person.  I suppose we both had a different mother in some ways.  My mom  was in her late 30s by the time I came along and dad was 40, so my sister had the younger, more energetic parents.  I had the "embarrassingly old" parents (at least in my mind at the time).  Her mothering style was much more fun for my sister than for me.  Of course, I was likely more of a handful to deal with.  I wish I'd had as much time with my parents as my sister did, but at least I made it through my forties before losing them.

For hours on end, my sis and I have sat together by our mothers bed telling each other "Mom" stories that the other never knew about, laughing over some and crying over others.  Once or twice I swear I saw her mouth turn up into a little grin when we talked about some of the funnier things.  Yet, although we desperately would love to keep our little circle of three, it's time for us to become just a really small gang of two now.

We've tried everything to help our mom make this transition.  We've told her over and over that it's okay to let go.  We agreed with the staff to increase the morphine and dilaudid and to take no  measures to revive her. We've assured her that we will look after each other, we've forgiven her for anything she may think she'd done wrong.  I even sang to her.  Anyone who has ever heard me sing would think that surely that would do it. 

Yet she stays. And once more I find myself trying to will someone to say goodbye to me, even though I hate goodbyes. Especially long ones.

The Semicolon

Up until two years ago, I'd made it through adulthood without feeling the need to adorn myself with tattoos or piercings anywhere other than my earlobes.  Not that I hadn't toyed with the idea of a tattoo, but "someone" would have nattered on about it far too much and listening to the snide comments would have dulled any of the fun of getting one.  About six months after I was on my own, I decided that I would take the plunge (and a few Tylenol for the pain) and go get some ink done.  Little did I realize how addictive this whole tattoo thing would become.  I now have four tattoos, each with their own special meaning.  The first one is "Breathe, Believe, Begin" to remind me that nothing is insurmountable if I take the time to take a deep breath, believe in myself and get started.  The second is an infinity heart to remember my father who passed away.  The third is my daughter's name surrounded by delicate flowers, so like her.  The newest is a forget-me-not flower, the symbol for Alzheimer's.  This one honors my mother.  There will soon be a fifth.

The next one will be the semicolon symbol, a very small and discreet little marking that will be placed on my inner wrist.  A great many people are sporting this tattoo, but I wonder how much of the general population know what the meaning of it is.  I'm sure that those who know me will likely think that it's my way of flaunting the fact that I'm a bit of a grammar nerd, but they would be very far off the mark in this thinking.  I expect to have to explain to quite a few why I have a semicolon tattoo, and I fully expect to find that a difficult thing to do.  However, as difficult and awkward as it will be, I'll explain it as many times as needed.

This symbol represents mental health struggles and suicide prevention.  In 2013 there was a vast social media campaign called "Project Semicolon", described as a "movement dedicated to presenting hope and love to those struggling with depression, suicide and self-injury".  The aim of the project was to create encouragement, love and inspiration.  This project resonates with me for several reasons.

As the parent of a teenager who has struggled for far too many of her young years with severe anxiety, depression and borderline personality disorder, any project or cause that will increase the awareness of these mental health issues has my full support.  For too long I have watched my daughter gather up the courage to face each day, never knowing if she will get through the entire day without something triggering a panic attack, setting off an uncontrollable rage episode, another round of depression or the need to cut herself in order to numb the emotional pain.  To say that being on the outside of it looking in is heart-wrenching is a definite understatement. 

I often feel there is nothing I can do to help this beautiful, intelligent and gifted young woman.  It's  emotionally, mentally and physically draining on levels that I can't even describe.  As a parent, giving her all of my support should be something that comes easily, but it doesn't.  We often end up tangled in a web of arguments, mistrust and hurt feelings because I can't always be the "rock" that I should be to her and I've not yet figured out how to not take things personally in the heat of the moment.  The personality disorder episodes are unchartered waters, and each time it happens it's hard to know what course to take, and I somehow usually get it wrong and make things worse.  Fortunately, she always finds her way back with some kind of inner determination that I only wish I had myself.

My hope with getting this little tattoo is that when I lose my patience and my own emotional strength in the midst of this journey with her struggle, I can look at it and remember what it's there for.  I hope that it reminds me of the parallel to a writer who chose to use a semicolon instead of an ending, and that she has chosen to fight this battle instead of giving up.  I hope that when she catches a glimpse of it every now and then, she realizes that it's there because I love her.  It's there because I want to encourage her and support her, even if she often doesn't think so.

I also hope she realizes it's there because I've had my own struggles and understand far more than I have ever told her, or ever will. I understand the fear, and I've had the chest crushing pain of anxiety attacks.  I am familiar with the sudden feeling of hopelessness and sadness that sneaks up and envelopes your entire being.  I get that sometimes these things prevent a person from getting out of bed because sleeping is easier.  I also can relate to the struggle to make a choice between a semicolon and a period.  The difficult thing is trying to convey that to her without it seenimg like I'm making it my story instead of hers.  Unchartered waters, indeed.

So with this next tattoo, I won't be taking the pain-killing Tylenol.  It just seems fitting that I feel the pain with this one.

;

Changes

I've realized recently that I don't like change.  That would be well and fine if change didn't seem to be the constant in my life.  It's the one thing that I can count on, almost daily.  I suppose that resistance is futile at this point, and truth be told I haven't got much left to resist with anyway.

I've had more changes in the past few years than most people do in a lifetime.  To be honest, not all of them were bad, and some were absolutely necessary.  A couple of them brought me a great deal of good (even if it took me a while to realize that).  However, it's the changes where I lose people that are the most difficult to deal with.  I'm so tired of losing people that mean so much to me, whether it's from distance, death, the parting of ways, or shift in life circumstances.  It sucks any way you cut it.

Currently, I'm finding myself in the position of losing another relationship that I desperately want to hang onto. I doubt that anyone who has had loving parents ever wants to see the inevitable change that comes with age.  I certainly don't, but another round with Alzheimer's, the most challenging opponent ever, keeps the changes coming. I'm seeing them in my mother, and I'd rather not.  Burying my head in the sand isn't going to stop these changes, nor will any of the other attempts at evasive action that I keep grasping at.

Each time I visit her, it seems to take her a little longer to realize that it's me.  It breaks my heart, and I always end up beating myself up over the fact that I don't visit her as often as I should due to the other responsibilities in my life and the fact that I can't be in ten places at once.  My logical side tells me that she has no idea how long it had been since I last saw her, but my emotional side takes me to task - every single time.

The fact that she is unhappy where she is doesn't help matters.  I was so grateful when we found a facility where she could get the proper care, and at first she was very content there.  It made things a lot easier to deal with, for all of us.  The contentment ended with the arrival of a new "roommate" who was very unpleasant to my Mom and constantly tried to physically prevent her from entering her own side of the room by blocking the doorway.  Had this been a couple of years ago when my Mom's feisty temperment was still in play, I'm pretty sure there would have been some humour-filled yet firm retaliation.  Instead, it  happened at a time in her life where my mother was timid, fearful and unable to stand up for herself.  This has created a set back in her well-being and happiness, which in turn, manifests more confusion in her mind.  For months my sister and I had been trying to get the facility to sort this out while we waited for an opening at another care facility more suited to her needs. As is typical when dealing with any kind of health program, progress seemed at a standstill.  Sometimes it feels like most of my life is spent waiting for the provincial health system to come up with a "care plan" for those that I love so dearly, and I can do nothing but wait and hope the plans don't come too late.

When we finally got a call that there was an opening in another facility, we realized that it would now be too detrimental to make any change to Mom's living arrangements.  My biggest fear in all of this (aside from the physical safety of my mother), is that it would speed up the progression of her disease. After consulting with the her physician it was confirmed that would likely be the outcome.  Having gone through this once already with my father, I'm all too well aware of how any sudden changes or emotional upset can affect the mental state.  Hell, even without having Alzheimer's, unwanted and unpleasant changes can have these affects.  I know, because I struggle with unpleasant changes so frequently that I often have a hard time keeping myself together enough to make it through an entire week without losing my sanity.  I can't imagine what it's like when half of your mind is already ravaged and confusion runs rampant through your day. 

It's heart wrenching to see my mother afraid, confused and in tears most of the time.  For the last few years my mom was very easy going and content.  Unless she was having an episode of dementia related hallucinations, you could always depend on a smile and a laugh from her.  Now, those smiles take a bit of coaxing and the laughter is a bit quieter.  I could also depend on her to know what was happening in my life.  She now forgets more frequently that I have a job, that my daughter is almost grown, that I have my own house.  I hate those changes with all of my being.

So far the only thing that hasn't changed with her lately is her knowledge that my daughter is her granddaughter.  When she sees her, she lights up and says "there's Emily".  It brings me to tears every time, because Mom was so overjoyed to be a grandmother. 

Recently I visited on a rare day when she recognized me and said "there's my baby" with her arms outstretched.  I ended up having to turn my head away so she didn't see my eyes well up.  It isn't because the words made me sad, but because I knew that the number of times I would get to hear those words are limited. 

I often think of the quote that says "without change there is no growth".   I used to like that quote because it seemed to say to me that good would always come from difficult changes if I waited long enough.  However, now it seems to me that the trend with changes to my world always mean a loss of some sort.
And every loss seems to take another little chunk out of my heart.

So if change really means growth, I don't want to grow anymore. 

Sixteen Candles - A Birthday Letter for my Daughter

To my dear daughter,

When you were born, I couldn't envision the day that you would turn sixteen.  You were so tiny and so new, that the thought of you as a teenager was unimaginable.  Yet here we are a few days from your sixteenth birthday.

You have grown from such an adorable, quiet and shy little girl into a beautiful, engaging and articulate young woman.  The tenacity that you show in accomplishing your goals is something that continues to amaze me.  Your courage in facing adversity and the challenges that you encounter daily is nothing short of incredible. 
The way that you so maturely handle the onerous task of trying to make others understand what sets you apart makes me so very proud of you.

I realized recently that you have been swimming against the tide since before you were even born.  Due to some complications, during the last months of your "incubation" I was consumed with worry that you wouldn't survive to see this world.  In true "Emily" nature though, not only did you survive but you were too impatient to even wait until the due date, thus arriving five weeks early.  Thankfully, though you weighed all of five pounds, you were healthy, feisty and bossy right from the start. 

From the first day, you slept and ate on your own schedule rather than the one that the baby books said you should (something you continue to do to this day).  You reached the milestones well ahead of your time, and you constantly surprised everyone with your early accomplishments.  Everything you did was exactly when you wanted to, never when we were expecting it, and always with a little streak of mischief and a lot of independence.

It's hard for me to look at you and not see the baby girl that gave my life such purpose.  I still sneak in and watch you when you're sleeping (don't get creeped out - all mothers do this), and I still see the little girl with the blonde curls who just couldn't wait to be "growed up".  Well, you're almost there and I'm still not ready.
I'm not ready for the boyfriend, not ready to see you behind the wheel of a car (and no, not mine) and I'm not ready to see you with a job.  Then again, I wasn't ready to hear you talk, or walk or start school but those things all happened, and it turned out just fine.

I know that life isn't always a bed of roses when you're a teenager, but soon enough you'll be out of the teen years.  High school will become a distant memory as you move on to other things.  You'll have your ups and downs, and the downs will sometimes seem insurmountable.  I can't tell you that will ever stop as you get older because life will continue to give you ups and downs.  How you handle the downturns will help determine the outcome, so muster as much grace and courage as you can to get through them.  You will welcome people into your life for many years to come, and you'll lose people as well.  Friends and lovers will come and go.  It will hurt at the time, but remember that when people leave you it isn't a reflection on you.  All it means is that their place in your story has come to an end.  It doesn't mean the story is over, just that a new chapter needs to be written.

So, write your story Emily.  Fill it with as many chapters as you can, and as many pages as you can fit.  Edit as necessary, review often.  You may not have written the first few chapters by yourself, but you now have total control in how the rest of the story unfolds.  Write it with passion, write it with pride and write it in purple because no one will expect that.

Happy birthday sweetheart, I love you to the moon and back.

Soulmates

I am in love.  I have finally found the one that can make me happy just by being near me.  My new love willingly goes everywhere that I go, and very graciously leaves all of the decisions up to me. I feel spoiled.  The pace is set by me, there is never a dispute about where I want to go, or what time of day or night I decide we should get out for a bit.  I have found a real gem, so quiet and so pretty to look at.  We can overcome the age difference, I am sure of it.  I have all a woman could ask for.  My companion practically purrs when we are together.  How loved I feel.  

 

Before anyone starts asking when the wedding is, I should clarify that I have fallen in love not with a man, but with my new car. I have given up all hope of ever being in any other type of relationship, and I'm pretty sure I can get at least an eight year run out of this one.  All I have to do is remember to keep it hydrated with fuel, wash it occasionally and take it in for scheduled check ups.  Sort of like having a dog, without having to pick up any undesirable leavings.

I don't have to be dressed in any particular style; my car cares not whether my hair looks like a corn broom in the middle of a fit, and it doesn't make smart-ass remarks on the state of my mood.  I don't have to try to make small-talk or have an emergency backup plan, unlike the three recent ill-fated dates that I foolishly embarked on over the last two weeks.

On the first one, I could clearly see my little car across the parking lot while I suffered an hour of what surely was more boring than watching paint dry.  How I longed to just make a run for it and ensconce myself securely in the haven of my lime green Hyundai. I think I kissed the steering wheel when I got in, but I don't really remember.  My brain was numb by that point.

On the second, although my car was parked out of sight, I knew it was there.  I couldn't stop thinking about it.  I finally "admitted" to my far too young date that I was interested in someone else and really shouldn't waste any more of his time.  I just didn't admit that the someone else was my car.  The one that I practically sprinted to once I broke a speed record finishing a cup of coffee.

The third (and as far as I'm concerned last) failed date took place blocks away from where I parked my little pride and joy.  I started having separation anxiety as I got further and further from where I left my little gem.  Now, to be fair, date number three was very easy on the eyes.  Enough for me to temporarily forget about my little green machine.  Until I asked him what he did for a living.  Once he said he was a commercial pilot, I had no choice but to fake illness and cut my losses. I work with pilots every single day.  I could find no polite way to say I'd rather be shot in the head than date one.  So I bolted.  Right back to the parkade and into the arms of my soul mate.  

When the seats started heating up, I knew I was forgiven for my betrayal. I'll never cheat on my amour again. I've learned my lesson.  Next week we're going to the automotive store to pick out floor mats and air freshener.  Because that's what couples do.

Memories of Dad

Tomorrow marks my first Fathers Day without my Dad. While sorting through some old photos last night, the memories of him were both overwhelming and heartwarming at the same time.  I was so very, very fortunate to have such a great father.  There's something to be said for the fact that I can't recall any unhappy memories of him.  Not a single one.  In all of our years together, we never had an argument of any type.  I can't remember a  time in my life that my father ever raised his voice to me or spoke to me in an unkind way.  I doubt there are very many people who can say that about their relationship with a parent.

I have nothing but pleasant and fun things to remember about growing up with the Dad that I had.  All of my childhood memories of him involve the two of us doing things together.  I think I was pretty much his second shadow (when I wasn't trailing after my older sister), but if he ever found that annoying he certainly never let on.  Any time Dad was working on whatever old beater of a car he had at the time, I'd be right beside him holding a wrench or some other kind of tool, likely asking a million irritating questions.  If he was working in the yard or on a project, I was there too.  I probably wasn't a whole lot of help to him, but wherever he was is where I wanted to be.  Some of that stuff with the tools must have stayed somewhere in the back of my mind, and it's starting to finally pay off.  He'd get a real kick now out of watching me try to do things the way I remember him doing them all those years ago.  Dad was meticulous about his tools and taking care of what he had.  I've discovered that I'm the same way with my own tools, even though up until the past year the only tool I owned was a craft knife. 

My father spent years trying to get me to enjoy active living, and when I was little, I would join him in pretty much any activity he came up with.  We used to go snowshoeing in the woods behind our house in the winter, and he even found me a pair of snowshoes that were exactly like his.  I had my own cross-country skis when I was six, and I remember spending hours skiing on trails, enjoying the scenery and each others company.  He desperately tried to teach me to skate on the lake down the road from us, but much like my dancing skills, I could only skate with my left foot for some reason.  And my feet would get cold very early into it.  Dad's "remedy" for cold feet was to take my skates off of me and stick my sock-clad feet into his armpits to warm them up.  Sounds disgusting now, but back then it seemed like a neat enough trick.

Summertime activities didn't seem to be my "thing" either, but Dad patiently kept on trying with me.  My sister was more of a "summertime" girl than I ever was.  Dad's aunt and uncle had farmland in Cape Breton, and my sister absolutely loved every bit of the farm.  Not so with me, although I'm sure that most of you who know me would be SO surprised at that.  I've heard that my sister would get right in there to milk the cows and feed the chickens etc., when she was young.  All I remember about those visits was that I wouldn't even get out of the car without holding my nose, which thoroughly embarrassed my mother (who I might add, only refrained from mimicking my actions because it would be deemed impolite).  I was afraid of the chickens, couldn't stand the smell of the manure in the fields and wouldn't be caught dead picking a cucumber or carrot if my last meal depended on it.  Dad accepted this side of me, and never once tried to force me to join into the farm stuff or made any type of remark regarding my distaste for everything farm related.

I can't count how many summers the poor man tried to teach me how to swim, but by the time I turned ten he admitted defeat and advised me to always have a life jacket handy.  Camping was another failed activity and I know that I spent the majority of those few trips complaining and whining.  I think my father must have had the patience of a saint to endure those short trips.  To this day my idea of camping is in a three star hotel, but I have to give him credit for trying.  I always appreciated the fact that Dad never got disappointed with my lack of enthusiasm or skill with some of what he tried to teach me.  He was very much a "to each his own" person, and I'm grateful that at least I came a way with a little of his outlook, if not his love of camping.

When I entered the teen years, my father certainly had his hands full with me.  I shudder now when I think of all of the really stupid things that I did, and the amount of worry and distress that I must have caused him.  Dad's way of handling my rebellious years was to more or less kill me with kindness.  The first time I became ill from drinking too much cheap red wine was one I'll never forget.  When I finally emerged from my bedroom the next morning, Dad very sweetly (and softly) asked if there was anything at all that he could get for me.  Some dry toast, black coffee, aspirin perhaps?  A pillow?  I would have rather been yelled at, or grounded or thrown out on the street.  Anything but the kindness.  That gave me more of a guilt trip than any amount of admonishment could ever have.  I'm pretty sure he knew all along what he was doing.

As daughters frequently do, I moved in and out of my parents home far more times than should have been allowed.  However, each time, Dad faithfully helped load and unload boxes and furniture without complaint.  He never showed the exasperation that he surely felt whenever I'd announce that I'd found "the perfect place". He also never said a word or got mad at me when I'd call to say that the "perfect place/roommate or boyfriend" wasn't working out.  This undoubtedly meant I'd be moving home again, and I wonder if he didn't keep a roll of packing tape in his back pocket for several years running.  The only hint he ever gave that my comings and goings were a bit much was when he was walking me down the aisle.  As we approached my soon to be husband, Dad leaned in and whispered "Are you sure this is what you really want?  Because I'm not moving your furniture again."

When I announced that I was expecting his first grandchild, my father was absolutely over the moon.  Especially since my due date was on his birthday - didn't end up that way, but he thought that was so very cool.  He insisted that he be the one to buy my daughter's crib and he was so thrilled to go "baby furniture" shopping with me.  I remember we had such a wonderful day together.  When Mothers Day came and I was still in the fairly early stages of pregnancy, Dad showed up at my door with a dozen red roses and a handwritten "Happy Mothers Day to Be" card.  When Emily was born, he was the first visitor to see her.  I'm pretty sure he slept out in the hospital parking lot, just waiting to get the all clear signal. 

Those are the kinds of memories I will always have of my Dad.  All of the gentleness, the kindness and the little things he did for the people he loved.  He can't be here with me physically tomorrow, but he'll always be with me in my heart.  Dad - I hope you're dancing in the sky.  Love you to the moon and back.