A New Home Decor Item…

With my nursing team’s persistence in making sure we do our best to keep me out of the emergency ward, I received a delivery last night at dinnertime (on a Saturday no less) of the IV equipment. When the palliative team comes through with help, they go all out!

Suzanna met the delivery person at the door, in came a rather substantial IV pole and several large boxes. She hasn’t opened the boxes yet, save for putting one bag into the fridge as she’d been directed to do.

As curious as I am as to know what’s inside (I would have thought that several bags of saline, tubing and syringes could easily have fit in half of one of the large boxes), I’ll leave it to my nurse to sort through when she visits tomorrow.

I’m grateful that I’m being looked after so well, but several thoughts comes to mind. Where on earth are we going to put all these supplies? Every nook, drawer and cupboard has been filled. The oxygen concentrator and tanks already take up floor space, my crisis kit has taken over the fridge. There’s just nowhere to put two huge boxes of more supplies.

The second thought is how this apartment long ago stopped looking remotely close to a normal home. Not that it ever truly did, I didn’t have the strength to properly unpack when I moved in last September so much remains in boxes. From the moment of approach to the front door where a sign boldly states that oxygen is in use, the apartment shrieks out that a sick person lives here. A wheelchair at the entry, machines whirring, oxygen tubing snaking down the hall, safety devices in the bathroom.

Now the IV pole. I’m not even sure how it’s going to fit into the bedroom, much less wheel through the doorway into the bathroom. The simply answer is that it’s not – I’ve leave that to your imagination as to how we’re going to tackle that dilemma.

The one thing that makes this all manageable in my head today is the knowledge that the IV is not meant to be a permanent measure at this time, only as an occasional procedure when I need rehydration. At least I’m praying that it’s occasional, that’s up to my kidneys to decide how that plays out.

What to do with the IV pole when it’s not in use? Well, we’ve let our imaginations run as to how to incorporate it into the apartment decor.

Coat rack? Drying stand for fine washables? Year round Christmas tree? Hang cured salamis from it? Magazine rack? Monkey bars for the cats? Monkey bars for me?

As much as I appreciate that my team is trying so hard to keep me here at home as long as possible, today everything is just a little too much in my face for my liking.

In Every Sense…

For the last few days I’ve been meaning to write another instalment of memories of Toronto, this time with memories involving the sense of touch. I’ll get to them in a few moments.

Thank you to the friends who expressed concern when this blog got quiet this week. Some physical and personal challenges have been exhausting me. Allow me to share some brighter highlights which did an excellent job of chasing away the tougher moments of the past week.

A few visitors truly brightened my week. One friend who I’d not seen in a very long time with distance between us having been a major obstacle, and another who shared her birthday with me yesterday.

Not to mention several friends, old and new, who made it clear that they could be called upon to accompany me/Suz to the hospital should I ever need to go to emergency again. My account seemed to have scared some of you almost as much as it scared me (and I’d even left the worst of it out to spare you the uncomfortable details).

On that note – let me once again say how much I appreciate my palliative nurses, most of all my lead nurse A. Upon hearing of my ordeal at the hospital last week, she spoke with my doctor immediately to order in supplies so that we can accomplish rehydration here at home the next time I get into trouble. I thought I was fairly well educated on medical protocols, I was delighted to learn that if a vein can’t be located, rehydration can be done through a subcutaneous needle into the fatty tissue instead.  That part I can provide, I’m not exactly packing abs of steel these days! I guess I’m not as prepared for my med school entrance exam as I had thought.

Now back to my beloved Toronto…

The feeling of my stomach leaping into my throat when driving westbound over the bump on the Gardiner Expressway near Palace Pier. Long since smoothed over, but even years later my heart would race in anticipation of that roller coaster ride.

The cobblestones of the Distillery District. Being the klutz that I am, I’d undoubtedly turn my ankle at some point negotiating the unevenness of the street.

The feel of a smooth, flat stone about to be sent skipping across the water on Lake Ontario. Rarely successful, it was all about the attempt. Many, many attempts. I’m surprised there were any stones left for the rest of you.

The coolness (and unfortunately sometimes the sticky tackiness) of a subway or streetcar safety hand rail. The lurch of the car when it was stopped too quickly (a great way to meet people before internet dating)!

Driving over the streetcar tracks on King, Queen, Spadina or College. The smaller my car, the more the tracks seemed to want to take control.

The windy windiness of the financial district or the York University campus. If I had started out with a good hair day, it certainly wouldn’t be ending that way.

The feel of cool pennies flung into the fountain at Yorkdale Mall in the hopes of a wish coming true. Which was usually for ice cream, how convenient that Laura Secord was steps away. 

The wondrously soft muzzles of the police horses at the Sunnybrook Park compound.

The heaviness of the revolving doors at the downtown Hudson’s Bay department store. The millisecond of silence moving between the blare of traffic to the hushed chatter of shoppers inside.

And this one is for any self respecting child growing up in Canada. A tongue stuck to a metal pole in the dead of winter. A rite of passage, but hopefully just the once being enough to learn to never do it again!

The Wicked Night, Part 2…

I’d mentioned a few days ago that I’d had a rough time at the local emergency ward. In hindsight another lesson for me in learning how to do better in asking for help.

Let me first say that I’m well aware of the fact that hospitals are understaffed. Many team members have to cut corners in order to get to all the patients. Fewer checks on the patient, hygiene and health safety protocols are compromised, information isn’t passed along or documented appropriately. Charts not reviewed thoroughly (I have serious drug allergies, if I wouldn’t have been somewhat on the ball Wednesday night things could have been even worse!)

Let me also add that it was my decision not to ask Suzanna or a friend to meet me at the hospital in the middle of the night. Many  have offered to come if I need them, my wish to allow the people I care about to get a good night of sleep won over.

I was admitted with severe dehydration, brought on by ongoing renal issues. I know my body well enough by this time to know exactly what I need. Rehydration (by this time I was well beyond doing this orally) and anti-emetics to get the nausea under control. I take some responsibility, my anti-emetics have an uncomfortable side effect and I held off too long with taking them at home hoping that’d I’d rally. A simple equation (and not to get graphic); output of liquids greatly exceeding input equals trouble.

The IV drip had been started by one of the paramedics while still at home, at the hospital a nurse moved the saline bag to a stand well above my head.

I was placed in a room by myself with a heavy door, no monitors, no call button. Too weak to get up in the first place, and not long enough an IV tube to get the door open myself anyway, I resorted to calling out for help when I realized that over the course of a few hours that the level on the saline bag was not dropping at all. I just wasn’t feeling that all too familiar coolness of the saline solution flowing into my vein. On top of that, my blood was flowing up in to the tube.

When a nurse finally arrived, he dismissed my concerns – telling me that because of my cardiac issues they had me on a very slow drip. 

An hour later I again called for help, shouting into the hallways at 3 a.m. as much as my weakened voice would allow, insisting that things were not okay. If I thought that I was dehydrated earlier, I  knew things had potential to become critical. I had missed my dose of cardiac arrhythmia meds on top of it, something I’ve had stern warnings in the past not to mess with. Again, I was told I was being impatient.

It wasn’t until another hour later when a different nurse came by to make a second unsuccessful attempt at gathering a blood sample that she actually looked at the IV tubing and bag. I’d indeed been not getting fluids, or the anti-emetics that would not long after they finally started flowing began to help me feel a bit better.

It was when I had a bit more strength that I had the courage to address what had happened directly with the first nurse.  We ended up having a long conversation about, speaking for myself only, my needs as a palliative patient. I spoke about how the emergency ward was truly the very last place I wanted to be, and that given a lengthy serious illness I had a pretty good idea of what I needed. I needed measures taken to make me feel more comfortable so that I could go home again. What I heard in reply was a plea to speak up on behalf of the nurses, to help their cause. Sorry friend, I really feel for you – but my energy has to be directed towards my own care.

Calls will be going out tomorrow to the team of paramedics who picked me up, and the the doctor who had taken over my care the next morning. Outstanding care, credit where credit is due.

What happened in between was simply awful. I pray that it was my last visit to emergency, when a patient considers that in the future the lessor evil to be possibly dying at home in a great deal of discomfort and mess – there is something really wrong with the system.

I’ve just passed what I’ve come to learn by experience to be the critical seventy-two hours after discharge from the hospital. The time during which if I’ve picked up an infection in the hospital it would have likely shown itself.

If there is a next time, I apologize in advance, but I will be asking someone to come with me. And I’d encourage any of you to do the same instead of trying to not be an inconvenience to a friend or family member. I’ve said it before and I’ll say it again, it’s too risky to go through the system without an advocate.

A special thanks to my wonderful neighbours A and D, who upon learning of my trip to the hospital via my blog wrote me a lovely note, insisting that I need go no further than one door down when I need help. Angels everywhere.

Continuing the City Tour…

I could have done without the interruption of the visit to the hospital this week, I can’t tell you how happy I am to be back home. Suzanna has worked hard to make our bedroom as comfortable a place as possible for me, I’ve been appreciating her efforts all the more after having been away.

Tonight – thinking back on what my nose remembers of Toronto!

The large production bakeries. One along the Gardiner close to the CNE, another on Eastern Avenue, and I can’t forget the Peak Freans outlet in East York. I’m salivating just thinking about them.

The exhaust fumes of the Toronto Bus Terminal on Bay Street, indicating that I’d soon be on my way to visit my beloved aunt and uncle in Bancroft.

The cheese shop in Kensington Market. I would beg my mother to let me wait outside while she shopped, too much cheesiness for my little girl nose!

The perfume counter at Simpson’s at the Eaton Centre. Buying my first bottle of perfume there, Miss Dior. Still my favourite. On evenings when I’m alone here, I’ll often spray a little on my pillow to help me fall asleep. A comfort sniff!

The Lush store on Queen Street West. The smell being a little overpowering if I remember, but the almond bath bombs were worth the headache that came with stopping in for a few minutes.

The smell of film developing chemicals at the Black’s camera store in the original Don Mills Centre (the mall having been reinvented several times over since I was a girl). I was hooked at age five when Mr. Eddie Black gave me a tour of the back of the store. The beginning of a life long passion for photography!

The tannery that used to reside at the junction of the Don Valley Parkway and the Gardiner Expressway. The stench would jolt me out a nap in the backseat of the car every time.

The Bloor-Yonge subway station. Indescribable. Rather best left undescribed.

Chinatown. Depending on the season, the aroma could be very appealing (the smell of dim sum wafting out on a cold winter’s day a particular pleasure) or the stench of rotting food from the back alleys could be stomach churning. Not the place to be on a hot and muggy August afternoon if it can be helped. Most definitely not during a citywide garbage strike. Trust me on that one.

Good thing the baby animals at the Riverdale Zoo were so cute, because what came out the back ends wasn’t so delightful to take in!

The smell of fuel at the ferry terminal, waiting for a trip over to Centre Island. And yes, I quite liked it (and I know I’m not the only one!)

The heavy, musty scent of earth and vegetation at Allan Gardens. I spent many delightful hours in the greenhouses photographing all manners of flowers and cacti.

St. Lawrence Market. Every stall brought a different, and often intriguing aroma. I’m really missing those peameal bacon sandwiches!

Freshly baked waffle cones at the CNE.  Funnel cakes would be a close second.

Remembering the days of living close to Lake Ontario, the occasional day when it would smell as it every fish that had ever swum in its waters had died at once.

Exiting the terminal at Pearson Int’l Airport. I’d bet that blindfolded I’d still recognize that I was home again.

Now it’s time to go back to scraping adhesive off of my skin from the bandages. Just when I think I’ve found the last little bit…

A Night I Don’t Want to Repeat…

I jinxed myself when I wrote last week that I had hoped to never visit a hospital again. That’s exactly where I found myself two nights ago, in the dreaded emergency ward. I’d been able to stay out of there for almost two years, but unfortunately my body conspired against me.

It was a very difficult decision to make in the middle of the night (Suzanna was away at her father’s for the night, upon my urging to give her a break from caring for me). I’d been feeling particularly unwell for the previous few days, a fever that’s stuck with me for weeks was getting worse. The chest pain had migrated to a new spot in my chest, and dehydration was setting in. By the time I called for help (first to my on-call nurse who recommended that I call 911 immediately) it was hard to even blink my eyes or swallow for the lack of moisture in my body.

What happened next might seem funny in the future, but not just yet. The paramedics were given my lockbox code to get into my apartment, they said that they’d had to fiddle with the lock in order to get in. Once they’d gotten me settled into the stretcher, an IV running (finding a viable blood vessel was fifteen minutes of stress – more so for them) we tried to leave the apartment. The door wouldn’t open.

A second fire truck/team had to be summoned to break the door open from the outside to let us out. A very long fifteen minutes for all of us. In my experience, I’ve never seen an emergency professional lose their cool in a stressful situation, and these gentleman never let on if they felt for even a moment that they were losing control of the situation.

Feeling so ill, I didn’t care in the least that we were leaving the apartment open. I just needed to feel better if it were at all possible.

Our local emergency department, save for one very impressive doctor who took over my care in the morning, lived up to my expectations based on previous visits to that ward. It didn’t start out well, the first doctor to see me was the same one who three years ago asked me if I had “decided” that I had ECD by researching symptoms on the internet after I landed in emergency with severe breathing difficulties. Coincidentally one of the paramedics who picked me up this week remembered that he was also with me on that night three years ago. He was so sweet on both visits, this time holding my hand while his partner did my intake work with triage.

While the ER was letting me down, my body wasn’t exactly living up to my expectations either. One nurse was able to get a small amount of blood out of a vein a few hours after I arrived but the quantity was insufficient for the lab. Four nurses then made a total of close to twenty attempts to access a vein without success, until the second doctor finally put a stop to it. It didn’t hurt me, but he just couldn’t watch it any longer. Who knew that they could try to draw blood from a thumb?

I could write chapters on what went wrong at the hospital that night and yesterday. First hand experience as to how my palliative status altered what many will already know to be a challenging situation visiting the emergency department. The worst part was the look in my daughter’s eyes when she arrived the next morning, seeing first hand the pain and indignities that I was experiencing. Fear that this visit might not be the last to the emergency ward despite my wishes to avoid it. If I thought that I dreaded it before, it’s nothing compared to how much the thought of a return visit scares me now.

Hiss, Boom, Bah…

I’m glad that readers enjoyed my last post about favourite flavours coming out of Toronto, tonight I’m remembering some favourite sounds.

This is my classic strategy for pain management – distraction. My body is pushing me to the limits this week; to try to take my mind off of the discomfort I’m doing what works best – making lists. Luckily, it’s a week during which much needs to be put down on paper. Or rather typed into or dictated to a computer, it’s been difficult to accept that holding a pen to paper isn’t working anymore. I can connect the two but getting anything legible out of the exercise is another story.

The squeal of the subway car as it went around the bend at Union Station. That was always sure to wake me up if I’d dozed off on the ride downtown.

The honk of the Toronto Island ferry. Accompanied by the chatter of kids who were having a day excursion to the islands as part of summer day camp. One summer I was one of those chatterers and had a ball. Except I didn’t chatter, I was entirely too shy and was content to let the others increase the decibel level.

The sound of the explosion of sparks that went flying when an audience member was invited to touch the static sphere at the Ontario Science Centre. I got to do it once, and never again wore messed-up hair so proudly!

The neighing, braying, mooing, baaing and general mayhem of the Royal Agricultural Fair.

The wild, seemingly endless honking into the wee hours of the night after the Toronto Blue Jays twice conquered the World Series. I’m pretty sure we still had accompaniment at breakfast the next mornings.

That eerie hollow silence inside the dome of the Planetarium. I do wish that it would have been around to show to Suzanna, she would have loved it!

Sounds of planes taking off at Pearson International Airport. I’m old enough to remember when there was just one terminal, with a parking lot that afforded a wonderful view of the runways. I’d either be really happy that family was about to arrive from Germany, or in tears because we’d had to say goodbye. Truth is, happy or sad – I could be depended upon for tears at the airport.

The shouting out of numbers as my mother and I waited our turn at the German deli. The delight in hearing the different dialects in the conversations between butchers and customers, waiting for the sampling of something delicious that was sure to be offered to me if I remained patient.

The wave of music as my feet led me down Queen Street at the annual Beaches Jazz festival. Within a few hours I’d have the chance to hear a good twenty plus bands, trying to decide which two or three groups would get my money for their CDs. I still listen to one of my favourites, Samba Squad!

The monotone buzz of thousands of conversations happening at once at the One of a Kind Show and Sale. I’m honoured to have once had a booth there myself, backing onto the booth of one of my favourite artists – Stephen Gillberry. Small prints created my Stephen hang above the bed, coming to me as a result of a swap of our work. They get so many compliments!

The whoosh of bicycle couriers speeding by. Their skill in manoeuvring around the city always mesmerized me. And kind of terrified me. I was tempted to start drinking coffee so that I could hang out at Jet Fuel on my lunch hour so that some of their coolness could rub off on me. The nerd in me prevailed and I stayed away.

The clop of hooves on the pavement as the police on horseback swept by. What glorious creatures they are! The horses I mean. Sometimes the policemen too. Now I’m blushing.

The sheer “boomosity” (yup, made that up) of the music cranked up before a band arrived on stage at the old Maple Leaf Gardens. “Chain Gang” will forever remind me of Billy Joel. He was running late, and apparently that was the only song that the sound technician had lined up. Okay by me.

Let’s leave out my screaming my head off on the Flyer rollercoaster at the Ex. And at Wonderland. And I suppose I can’t leave out the log flume at Toronto Island. I know I’ve said that I was a quiet child, but that wasn’t entirely without exception.

Any memories that you’d like to share?

Toronto, Bite by Bite…

One rough day, or rather another rough day. It’s been weeks of intermittent low grade fever and chills on top of the other shenanigans that my body has been up to (and enough with the hiccoughs already!) It truly can get quite tiresome.

My friends and volunteers consistently offer to bring me whatever edible treats might appeal to me, yet I can’t think of anything in particular that I want. I did have one coincidence a few weeks ago, minutes before a food volunteer arrived I told Suzanna  that I was hankering for some mashed potatoes – lucky me, that was exactly what the volunteer had prepared. Serious comfort food. Seeing as I’m mostly on soft foods and liquids now with a wonky esophagus that doesn’t always cooperate, a little butter (okay, a lot of butter) is a welcome addition to help slide spoonfuls of mashed potatoes on their way.

I passed on Suzanna’s offer this evening to prepare dinner for me before she went out for a few hours, the thought of food just doesn’t appeal to me. Some of you might want to suggest that I should eat anyways, but I know from experience it’s best to leave well enough alone. My body will tell me what it needs, I have to trust it.

Others have expressed regret on my behalf for the foods I’ve had to give up either due to allergies or a rapidly expanding list of intolerances, but surprisingly I generally don’t feel deprived. Who knew there were so many variety of delicious soups on offer?

I can think back fondly on foods that I’ve enjoyed over the years without feeling upset about missing out. It’s not difficult to remember the tastes, textures and aromas – I was without doubt someone who had lived to eat, rather than eaten to live.

I’m taking a wee tour tonight of some of the culinary delights that I’d enjoyed in my home city of Toronto over the years, maybe they’ll bring back some memories for you too. Just please don’t tell me if they’re no longer available? Let me dream a little.

Popsicles from Becker’s convenience store. “Allowance worthy” as a kid, and I continued the tradition with Suzanna on hot summer evenings when she was small.

Beer nuts at the CNE Automotive Building. I never brought home enough bags of them.

Fresh bagels from Gryfe’s. It was my father-in-law who would fetch them when the bakery opened early on a Saturday morning.

St. Lawrence Market, Carousel’s peameal bacon sandwiches. Weather permitting, eaten out on the terrace. Even better if Buskerfest was on.

Jamaican beef patties at the Warden subway station. Totally unlike me to pick up something up at a less than pristine food establishment, but the aroma would haul my behind in there before I could think twice.

The ice cream trucks in front of City Hall. Vanilla chocolate swirl every time.

BBQ pork buns from Chinatown. My apologies to my coworkers who found the aroma irresistible when I’d heat them up for my lunch at work.

Birthday cakes from Chocolada in Thornhill. Hazelnut mousse reigns!

Fruit flans from the Hazelton Cafe. Especially fabulous if kiwi was in season.

Golden Star (Thornhill) burgers and fries. The more of us crammed into a booth the better back in high school.

Harvey’s Frings. Combo fries and onion rings, date night treat with my high school boyfriend.

Ace Bakery, anything on offer except for olive bread. Olives and I are not friends.

Blueberry danishes from Zane Patisserie in the Beaches. Okay, that one I’m still craving on a regular basis. Gluten intolerance be damned, for those I’d gladly bear the discomfort that follows.

Pistachios (the ones with coarse salt) from Arz Bakery. Their baklava is also heavenly.

Pork rinds (affectionately known in our household as German diet pills) from Vienna Fine Foods.

Enrico’s pizza in Scarborough. A hot mess of grease, cheese and pepperoni, but the fun of sneaking Suzanna out of elementary school at lunchtime made it taste better than any other.

There will be other memorable foods that are sure to pop into my head over the next few days, but for now I’ll stop before I start drooling. I’m not yet tempted to have something to eat, but I may yet get there tonight.