Patience and Timing…

The wheelchair rep left a short while ago, we spent about twenty minutes going over all the options available to ensure that the new chair truly fits. Who knew that it could be customized to the degree that it will be? It’s nothing fancy, but at least it will fit me (provided that my outings aren’t consistently to the handicapped–accessible Lindt chocolate factory outlet, in which case I should have considered ordering a wider chair).

I had checked out the manufacturer’s website over the last few weeks, I was delighted to hear confirmation today that I could indeed order the chair in a colour of my choosing (at least for the metal bars, the rest will be black). If I must have a wheelchair, I may as well have it match my decor! And so it will – my selection will go nicely with the living room furniture nearby to where the chair will be stored when not in use.

As for when I’m out in public, there’s just no hiding the fact that I’m in a wheelchair. I can have a bit of fun making sure my outfit doesn’t clash, but will the combination be attractive enough so that people don’t notice that oxygen hose up my nose? Doubtful, but I can hope…

Now the hard part – the manufacturer is running behind with orders and it’ll likely be at least two to three weeks before it arrives. Too much time to think about where I’d like to go! Not that getting out will be a frequent event, but it will most definitely be something to look forward to.

Timing these days is an issue. To get out, it has to be one of my good days. Those don’t arrive with regularity or the frequency I’d prefer, but once in awhile they do happen.

A few things have to come into play to have a better day. First, I’ll have had to stay off my feet for at least twenty four hours prior. Short bathroom trips aside, the key is to stay in bed with no undue pressure on my bones or heart.

Then comes the timing of my medications. At long last I have access to a pain medication that takes the edge off (most days at least), but it needs careful administering. It’s quite hard on the stomach and organs so it can only be taken for a few days at a time. The days in between? I suspect you don’t want to know what those days look like.

As effective as the new pain med usually is, it doesn’t like to stay down to do its work. Bless my doctor for getting me a supply of an anti-emetic (for nausea) that’s normally used in conjunction with chemo, the stuff is magic.  Gravol can’t hold a candle to it. But….it also puts me to sleep. Not totally unwelcome in the last few weeks, my night-time sleep has gone down to about four hours max – those daytime naps from the meds have been heavenly. Drugged state or not, I’ll take them.

Good thing planning and organizing have always have been my forte. Getting out will take much forethought, but I’ll have plenty of time over the next few weeks to figure things out.

And I’m totally not kidding about the Lindt outlet, it’s second on the list after a trip to Longo’s supermarket. How convenient that they’re in the same mall.

As for when the nice weather comes along in a few months time, I’ll have quite a different list of desired destinations ready to go (unfortunately the wheelchair didn’t come with an option for snow tires!)

Stepping Into the Other Pair of Shoes…

At midnight last night, a text message popped up on my iPad. “Are you awake? There’s a small problem”. I’m always awake at midnight, I quickly replied that I was indeed up.

Although I didn’t recognize the telephone number and no name had appeared, the country code was one that was familiar to me. Not because I’ve ever called it, it’s just one of those curious things I look up when I’m bored.

Code 66 is Thailand where my closest friend and her husband are vacationing, as they do every year for an extended stay. Normally we communicate over Skype, her cell phone or now Facetime, so I’m never left wondering who the caller might be. Except for this time.

A phone call followed a few minutes later, my friend was heading into surgery for an emergency appendectomy and wanted me to know that she wasn’t going to be available for our usual daily call and not to worry.

I was of course concerned for her care and comfort,  having surgery far away from home offers added worries. She assured me that the facilities were perfectly acceptable and that she would be out of hospital within a couple of days. And even likely back to the beach soon after that.

Yet of course I worried. I don’t sleep much at night in the first place and my unoccupied mind had to be there with her in spirit.

I received a text message from her husband this morning that all went very well which certainly eased my mind.  I’m sure she will indeed be back at the beach very soon, she’s a tough cookie having had her fair share of serious health issues to prove it.

She said something  to me last night that many friends have said to me when going through health and personal challenges. “Sandy, it’s nothing compared to what you’re going through, please don’t worry”.

The only thing that made the worry for her any less was knowing that her husband was by her side, as he always is faithfully holding her hand. Even when his work has taken him thousands of miles away, he arranged as no small undertaking to come to her when she faced a serious health crisis several years ago. At that time she too said to me, Sandy – it’s nothing compared to what you’re going through. In fact she waited until the worst was well past before even telling me, knowing herself how difficult long distance worry can be.

This is never a contest between me and my friends about who is suffering more. I want to support my friends in any way I can when things are tough, I try to never diminish their pain or sadness in comparison to my own. Sadly I know that often they don’t share their own trials because they feel they’re not as tough as mine and feel bad about bringing them up.

What this episode did teach me last night was about how utterly helpless it’s possible to feel when someone you care about is facing a difficult challenge far away. My friends tell me how they struggle with these feelings, and I always tell them not to worry, that I’ll be okay. What I didn’t realize until last night was just how much further that worry can be compounded by the thought that they might doing it alone until I let myself imagine my friend by herself in a Thailand hospital.

For those of my friends who know S., I know you send your best wishes for her speedy recovery.

But honestly, this episode was a dose of reality for me on a number of fronts. Despite all the preparations, documentation, schedules of Personal Support Workers, visitors and planning for what happens when the more serious health episodes come along – I’m most often alone when the worst pain comes along. Maybe my friends do indeed have valid reason to worry, I shouldn’t be so quick to dismiss their concerns. But that opens the door to worrying about my own welfare and I don’t want to let myself go there. It’s often easier to dig my head in the sand when it comes to facing my own health challenges. In hindsight, I should have ensured that I had a friend with me for every radiation treatment, every appointment where bad news was anticipated, every difficult procedure. I made the decisions to not accept offers because I didn’t want to be a burden. I’m slowing learning that people who care about me feel better knowing that I’m not on my own, it helps them too.

The discussion comes up quite regularly whether trying to live here on my own is the best option, as each day passes I’m not entirely sure that it is.

An update on yesterday’s post about the wheelchair. A final measuring session happens on Monday, and hopefully the chair arrives fairly soon after that. So far, the front runner on my wish list  for the first outing is a trip to Longo’s (a Toronto area grocery store) to see the produce display. Squeeze a lemon or two, pick out something delicious for a friend to cook up for me. Dreaming big!

Celebrating Victories, However Hollow They May Seem…

Before I launch into some news that came along today, I wanted to share an article that touched me deeply when I read it for the first time yesterday. It comes from a mom and wife facing metastatic breast cancer. It appears that I’m completely unable to get to the last words without shedding tears no matter how many times I read it over.

So much of what is written in this post hits home. A heartbreaking talk between mother and daughter about the illness, and about sharing her struggles  publicly. It’s about fear, courage and love and so much more.

I could say more, but I’m just going to share this link and leave it at that. Family and friends who know more about my personal situation than what I can share here may understand why this post has been so difficult for me to digest.

http://www.huffingtonpost.com/lisa-b-adams/conversation-parents-kids-cancer_b_2622619.html

Now for my news. After a long struggle with social services, my ex’s insurance company and suppliers I received word this morning that I’m finally going to get a wheelchair that fits me, and has the features required to allow me escape from this apartment. Lots of help required, but I’m going to be able to visit the outside world again fairly soon. Wherever shall my first destination be? I’m long overdue for a visit to my Toronto medical team, but that certainly won’t be the first place on my wish list.

A victory? I’m celebrating – and my friends are conducting the online equivalent of a riotous stadium cheer for the hometown team’s trouncing of the opposition – but put in context, how is this a win? What has this situation come to that we’re thrilled to get a piece of equipment which further cements the reality of my declining health? Why months to get to this point?

It seems a hollow victory indeed as I stand back. It’s been a tough lesson in economics, number crunching and bureaucracy. A fair percentage of the daily challenges I face are. It’s often only when a plea for compassion is extended that rules are bent. And they are bent, it’s sometimes the only way things gets accomplished around here.  I detest asking for special favours of others, to be singled out – but I’m learning that it’s how the game is played to get what ought to instead be standard issue. Still lots of shortfalls and more mountains to climb. At least now I have wheels to make the physical part of the attempts somewhat easier.

Love Me, Love My DNR…

I was chatting with a friend from the UK on Skype this afternoon (I love where playing Words With Friends has led me!) when I mentioned that I was working on a new blog post with controversial subject matter (with a smile and a hint of sarcasm he quickly piped in “Sandy, you? Controversial?”)

Most days I don’t have enough energy for rousing conversation or debate anymore, but there is a subject that creeps more and more into daily life out of necessity. I’m going to shove this one heartily into the arena.

Please offer your loved ones an immense gift (despite this being a very difficult task for most) and share what your wishes for care  and final arrangements are should you become seriously ill and/or incapacitated. Most of the people who are aware that I have documented my decisions regarding my care agree that the conversation is an important one to have, yet themselves have not discussed their wishes with the people closest to them. Let me add a request to please get your will sorted out, you’ll save your family what might possibly be no end of distress and confusion (and I have a few lawyers to recommend should you not already have one).

Given my current state, many conversations with nurses and other health care professionals start off asking if my “Do Not Resuscitate” order is still in effect, and easily accessible on my fridge and in my purse. Yes. Yes it is. It can be a tiresome question to answer, but one that I’m glad continues to be asked.

I’m grateful that this subject is discussed with compassion and concern, it confirms that my health care team shares my commitment to what my final wishes are (and I’m free to change the plan if I so desire at any point).  More so however, I’m  grateful that my daughter won’t be faced with difficult decisions should I be incapable of communicating.

There’s a plan incorporating emergency access to my apartment, notifying my family doctor instead of calling 911 (to avoid a circus of emergency responders whose assistance wasn’t required), what measures may be taken if I’m in a bad state – all written and accessible. There’s even a government provided crisis kit in my kitchen with medications that would ease any extraordinary discomfort, some of which I can self administer or have a nurse deliver to me in my final weeks, days or hours. There’s a fair likelihood that I’ll be on my own when these matters need to be addressed, it’s entirely possible that I could be relying on a stranger to open up that manila envelope attached to the side of my fridge.

I’ve become a big fan of podcasts, my desire to keep learning hasn’t diminished. Most of my learning is unrelated to my illness, but occasionally there are presentations of relevance to my situation. And if you’re breathing (which I suspect that most of you are), relevant to you as well.

Allow me to share with you two podcasts that coincidentally came to my attention today.

The first comes from WNYC’s Radiolab “The Bitter End”

https://itunes.apple.com/ca/podcast/shorts-the-bitter-end/id152249110?i=129075366&mt=2

(it leaves to wonder if I should reconsider a tattoo?)

The second from CBC’s White Coat, Black Art “Do Not Resuscitate”

https://itunes.apple.com/ca/podcast/do-not-resuscitate/id270907475?i=126113393&mt=2

As I reread this, I haven’t really even touched upon the controversial part of what I had planned to write. Another day. Today, just a plea to do something very important with, and for your loved ones.

Shaking the Foundation…

Sometimes I pray that bad things do indeed come in threes. There are times that challenges come at me so fast and furiously that I hope that the after the third one I get a bit of a break. Sometimes I do, sometimes I don’t.

Or there are times like tonight that two challenges have hit close together and I’m braced for the third. And I pray that the saying about bad things coming in threes falters now and again and I have a better day tomorrow. I need something to go right. It would make a welcome change in the constant onslaught of setbacks. I can’t even begin to tell you how badly I need a challenge to have a positive outcome right now. Not just be mediocre, not just be passable or barely acceptable (which is the current definition of a success around here).

The successes that I have are surrounded in sadness these days. Yay, I found a buyer for my favourite lens! But hey, I just had to sell my favourite lens! Yay, I found a buyer for the dining room table! But hey, I had to sell a custom made table that my daughter and I loved!

I need something to high five over, and someone to be there to high five it with.

Late last night I split a tooth. On something really soft (did you know the foods that people most often break a tooth on are soft bread and muffins?)  I’d already taken off my oxygen for the night (you might remember a previous post about moving about too soon after disconnecting. Not good). I wasn’t able to move as quickly as I would have liked towards a box of tissues to spit out the contents of my mouth that were suddenly of a texture they ought not to have been. My tongue had already figured out what had happened, it felt a sharp jag along one of my molars that threatened to cut if I veered too close.

Normally, not a big deal. Make an appointment with the dentist, get it taken care of.

Not quite so fast…

I won’t bore you with the details but I’ll state that I REALLY need a suitable wheelchair. And the friend who took me to my appointment today would gladly beg along with me. The chair I currently have just isn’t working out. The saga continues with the insurance company, I’ve lost track of just how many months this has gone on. And I’ll add that I’ve been made aware that I’ll never again be able to have dental work other than a cleaning done in a dentist’s office. My cardiac issues do not allow for me to be administered the needle for freezing before work begins, if I need so much as a wee cavity filled I’ll need to have the work done in a hospital. I’m one tough cookie, but even I’m not going to have major dental work done without freezing. Though truth be told, at this stage of my illness I wouldn’t be bothering with dental work unless something significant happens like part of my tooth snapping off.

An exhausting trek (and that’s truly an understatement) resulted in a clean-out of what remained of the tooth and a patch job. A patch job that needs to last… well, just long enough.

As I was waiting out the afternoon  in my apartment before the late day appointment, the fire alarm started alarming. I don’t know if there’s even an appropriate word for the sound of the fire alarm. Screech? Scream? Shrill? Whatever the name of the sound, it was driving the kitten absolutely insane. Jumping up on me (with nails primed)  for comfort, then running around madly. The poor dear, and I wasn’t too thrilled about the sound either.

And it kept going, and going. My PSWs have been asked to check in the lobby for notices about fire alarm tests and other building info since I don’t get down there, but there had been no forewarning. Then the fire trucks arrived. I couldn’t see them (I look out over the back parking lot), but there was no question that they were at the front of the building. The alarms kept ringing. And I heard lots of heavy traipsing (firefighters don’t tread lightly in those heavy boots!) Then I could hear my neighbours vacating their apartments to head to the lobby as we’re supposed to do in such a case.

The alarms kept on going. And the realization became more unsettling by the minute that in case of a true fire (and I still don’t know anything about the circumstances regarding the alarms this afternoon except that my nurse said there was a lot of kerfuffle in the lobby as she passed through shortly after) that I was trapped. On oxygen and unable to walk more than a very short distance and most certainly unable to stand for more than a minute or two at a time, I wasn’t going to be able to follow my neighbours. How could I not have considered this possibility as the severity of my disabilities grew? That if there’s a fire I’m going to need to be carried down the stairs?

A few phone calls to make tomorrow to figure out what happens to the disabled when an emergency situation requiring evacuation takes place, I’m not the first person to be in this position, I’m sure there’s a perfectly sensible solution. I just don’t know what it is yet.

A broken tooth and an emergency in my building have tripped me up. Normally they would have been taken in stride, and I would have done what needed to be done. On the outside I’m as calm as can be about these two incidents, yet inside I feel a gnawing feeling that I haven’t been able to shake.Two more reminders of how isolated I am, and how dependent I’ve had to become on others.

I could really do without a third reminder this week.

Gratitude–Issue # ?

I’ve lost track along the way of how many posts I’ve entitled Gratitude. I hope that in reading my blog you understand just how much of it I feel towards the friends and volunteers who’ve stepped in to ease my journey. It’s the little things, it’s the big things, and all things in between. It’s the things that friends aren’t maybe even aware of doing that can help (tonight it was a hug that was held just a little tighter and longer than usual when saying goodbye).

Tonight was my first night as a recipient of a meal prepared by the volunteer organization Food Train, they’ll be providing me with meals twice a week going forward. Tonight’s dinner was actually more like six meals, lots extra for the freezer! The organizer ensured that all my dietary restrictions were covered off, and asked detailed questions about what I like and what I don’t care so much for. And she also insisted that if a craving for anything struck I was to be sure to let them know. If tonight’s homemade vegetarian gluten free lasagna is any indication, my belly will be very grateful several nights a week!

It’s no secret that I really don’t like living in this apartment. Nothing I seem to do makes being here any easier. I suspect not having left my apartment in many weeks really hasn’t helped matters (do I even remember what outdoor air feels like?) However, I made it a mission this week to appreciate some of the things within these four walls.  Here goes.

Hot water straight out of the tap. In the old house it could take a few minutes for the hot water to travel up to the second floor, and it would most certainly run out before the bath was full. Here, in less than a second beckoned hot water arrives. And it lasts for a good long shower, that’s the one activity that I make sure I save energy for every day. These days I have to use a seat in the tub – I’m grateful to have that too.

Delicious smelling soaps, shower gels, hand and body lotions. They make those showers all the better. Almond, chocolate, orange-vanilla, raspberry creme, coconut and even fortune cookie scent. I’ve been mightily spoiled over the holidays. If they tasted as good as they smell you might catch me licking my forearm when I thought you weren’t looking. I’ll leave that job to the kitten, he’s especially fond of raspberry creme, it’s hard to get him to leave it where I’ve applied it!

The Turtledoves Gluten Free Bakery treats on my counter and in the freezer. I’ve never set foot in their shop, but thoughtful friends keep me stocked with their amazing treats. Friday is Cheese Bread day, and along comes K. today with a loaf having heard how much I love it. Toasted, with Nutella. You’re welcome to grimace, but until you’ve tried it, don’t knock it! And the lemon squares may or may not survive until breakfast…

Bamboo sheets. If you’re going to have to spend most of your time in bed, I highly recommend them. The softest sheets I’ve ever owned. Gratitude too for the PSWs and friends who change the sheets for me often so I can have a fresh bed several times a week.

Almond vanilla linen mist. Again, if you have to spend lots of time in bed, sheets with a favourite scent make it a little more pleasant. I go to sleep with my bedding smelling of marzipan. When I wake up from a nightmare I find it helps to have a scent that I love surrounding me. It’s like a litmus test for the subconscious, certainly it wouldn’t smell so delicious if the bad guys were really there in the room with me?

Photos of my daughter. She’s not thrilled that there’s a photo of her on every wall of the bedroom but I’m afraid this is one battle she’s not going to win. There’s nothing I’d rather look at if I can’t have the live version sitting here with me.

Many of the items listed above are here only because of the generosity of friends. Please don’t mistake this post as a request for more of anything, the apartment is well stocked at the moment (especially with Nutella!) Just an exercise in appreciating the little things in a challenging environment.

What Can Happen in 91 Hours?

In my last post I mentioned that my dearest friend came for a visit from the east coast, she flew out again this morning. Three visits in the last year, but I must admit this trip we got up to the most trouble -  without me ever leaving the apartment!

S. and I have a friendship that spans just shy of twenty five years. During that time we’ve both been through some difficult times, yet we’ve never let the many miles between us get in the way of strengthening our relationship. She’s been my rock (especially throughout the last two years), unwavering in her support, love and encouragement.

The last three trips have had their bittersweet moments. In the spring we met with the funeral planner to make my final arrangements. She helped me pack up my belongings in the house that I had so dearly loved living in and found so hard to leave. In December she came, knowing that my daughter and I were having a very difficult time facing Christmas (which in the end we pretty much ignored, it was just too painful to take on this year).

This trip she ran numerous errands for me with the help of other friends, including getting my sweet kitten neutered yesterday. The poor lad is not all impressed by the cone he has to wear for two weeks; he startles himself each time he passes the mirrored closet in the hall. Last night he had two women cooing and cuddling him, perhaps a fantasy for a few other men out there?

There are tough discussions to be had. She knows every detail of what has to happen, and what I hope to have happen at the end. Often the tears flow when we have these talks; I know I can trust her to be there for me and make decisions that are best for me and my daughter. There is simply no doubt about that, given the way the last two years have played out it’s a blessing that never goes unappreciated.

It can’t be all sombre though, can it? Saturday a few friends and my daughter joined us in my “boudoir” to make it a memorable and enjoyable evening. Great food, amazing company, more than a few laughs. With a sly wink it was suggested that it was the best time some of us have had in bed in a long time.

S. and I were on our own for the last two nights. There just isn’t any other way to put it – sheer goofiness set sail on Monday night! No booze, drugs or other mind altering substances – just two friends between which there are no walls. And no judgement thankfully either!

With permission (if I’m to be honest, it was with insistence!) I’ve including a photo that was snapped, let’s just say that we were on a mission for creative new applications for medical equipment. And no, it’s not a photo of me (I can’t reach my toes anymore to be doing a pedicure, just getting socks on is an adventure most days!)

Complete and utter silliness. Exactly what I needed a good dose of.