A Christmas to Remember…

Perhaps I’m not terribly original in my choice, but my favourite movie for as long as I can remember has been “It’s a Wonderful Life.” “Life is Beautiful” runs a close second; such is the life of the almost full-time optimist. A title sincerely tested over the last few years, but I remain an optimist all the same.

Every time I watched “It’s a Wonderful Life”, my faith in humankind was lifted just a little bit higher – for at least a little while. It would depend on my circumstances at the time as to how long that feeling would last. There were also a few years in there where the premise of the movie was almost lost on me, including last year. Last December I still had cable and a PVR, and set it to record the movie a few days before Christmas.

For weeks the recorded program sat on the PVR, and eventually I just deleted it – I just couldn’t imagine that the movie would do anything other than make me feel even sadder than I was at the time about the situation happening to me and my daughter.

This year has been beset with challenges that I couldn’t have even imagined. The circumstances cause everyone to shake their heads in wonder, or more accurately in shock. It seemed impossible to believe that things could get worse, yet over the coming months they did.

Fast forward to a year later.

What’s transpired over the last week has been simply magical and breathtaking. The year in whole has been a study in extremes, but right now the good stuff overwhelms.

This year, without cable TV, I haven’t been able to catch “It’s a Wonderful Life”. And I don’t have to. The movie has come right to my front door. And into my mailbox. And over the phone.

Some of it came as financial aid as it did in George Bailey’s case. Friends and strangers put together their own version of a Christmas miracle to help fill our cupboards and fridge again, also ensuring that I am able to get months of the housekeeping assistance I desperately needed in my declining state of health – plus enough to allow me to treat my daughter to a touch more than the pair of slippers which was the only gift she’d asked for. A tremendously generous gift from a large group of people I’ve never even met, generous in both in dollars and the desire to be of help. The effort led by a friend who is one of the most genuinely caring people I’ve ever had the privilege to know.

I’m able to get a few new clothes, my friends have been very kind in not mentioning the fact that they’d see me in the same wardrobe items over and over again. I’d convinced myself that I was not too old to get away with the look of frayed jeans. I am.

Another lovely surprise this week, a stupendous virtual tour of New York City was hand delivered. Authentic right down to the samples of the Philosophy shampoo and conditioner that the hotel  that I virtually stayed at stocks in their guestrooms! This gift was put together by a friend of my daughter whom I’d met just once briefly; the assembly of this wonderful gift was months in the making. I just can’t put it down, every time I look at it I see something I hadn’t noticed before.

Other amazing treats have poured forth. Lots of delicious food (including more than my fair share of chocolate!), a wonderfully relaxing massage, an angel (a reminder of all the here-on-earth Clarences who are watching over me!) and most appreciated - gifts of precious time spent with me in person or on the phone, and through so many lovely emails.

A home visit from my estate lawyer on the afternoon of Christmas Eve (his wife even putting their holiday preparations aside to act as witness) so that I could go into the holidays secure in knowing that my wishes for looking out for my daughter’s future would be carried out.

Other professionals and volunteers who’ve moved heaven and earth over the last weeks to ensure that these weeks that I’m blessed to spend with my daughter over the holidays are as carefree as they possibly could be. And having the sensitivity to step back to leave us to some time alone too. Last night my daughter and I threw tradition out the window and had ourselves a Christmas Eve that we mutually declared to be our best ever, despite that fact that we hardly budged from the comfort of the bed.

Over the years I’d wondered if anyone could truly feel as special and appreciated as George Bailey did at the end of “It’s a Wonderful Life”. The answer for me is most decidedly yes.

Thank you my dear friends, we’re so very lucky to have you. It’s been a Christmas that couldn’t possibly be outdone if we’re to measure it by the warmth you’ve put in our hearts. You’ve given me the most beautiful gift imaginable by letting me know that you’re sticking by my side on this journey.

Winning. And Losing…

A few weeks back I wrote that when there’s a longer stretch between posts that my friends and readers offer their concern for my well-being. This time with reason sadly.

When I started writing this blog it was a way to share updates on my journey with ECD with friends. Everyone could read the same update, get that out of the way and then I could then spend my time speaking of more enjoyable matters with them.

I’ve been told that this blog has been a resource for other patients dealing with this illness; wondering how I’ve made out with the various experimental treatments I’ve tried over the last three years as they consider their own treatment options.

Along the way this blog turned into a story, sharing the medical details of my battle with ECD, telling anecdotes of my family life (funny events have a way of following me around, I’m glad to have added a smile to your faces once in awhile!), sharing quite openly about how I’ve been dealing with the illness and a rather trying set of personal circumstances.

As with any story, at some point it needs to draw to a close. Going forward I imagine that the posts will be fewer and further between. The truth is that my health has been declining quite rapidly over the last weeks, and although I like to think of myself as the eternal optimist I need to face some harsh realities. There just aren’t that many funny stories to share these days (but they’re not completely absent either!)

Some tough discussions have taken place over the last week, including one with my daughter that I wish with all my heart could have had a very different outlook. My best friend flew into town on short notice to help me take care of some stupendously difficult tasks that I would otherwise have had to tackle on my own.

So far this sounds like the losing part of the blog title.

When my daughter came home from school this past week it was blatantly obvious too her that some big changes had occurred in her absence. My heart was breaking as I told her how things appears to be playing out for me, and I told her that I hoped and prayed that she didn’t view it as me giving up.

What she said to me was a gift that I’ll take with me to the end. Through her tears she looked me in the eye and told me that as far as she was concerned, I’d won. That I’d been provided with a poor prognosis, and I was still here beyond our expectations.

Perhaps I’ll rally again as I have on previous occasions, but sadly things feel very different than when I’ve gone through other medical crises.

I’m surrounded by people who love me, care for me, and accept me for who I am (quirkiness and all!) and who are making this last part of the story as happy and peaceful as I might possibly hope it to be under the circumstances. But I am very, very tired in every sense of the word.

I’m not certain when I’ll stop writing here, and it’s of course entirely up to you whether you check back or not. Regardless, dear readers - I thank you for sharing this journey with me over the last three and half years.

The “Nothings” That Are Truly Something Special…

The bag was handed over to me today with “it’s nothing Sandy, really”. One of many gifts, favours, kindnesses that are extended to me on a regular basis. Today it was soup and dessert, a dinner I didn’t have to rummage for. Frankly the fridge and cupboards are quite empty (for a number of reasons that cause my heart to ache if I allow myself to think about them).

Tomorrow the hospice feeds me lunch, another meal in a week during which it’s just been too difficult to stand for anything length of time at the stove.

A whole lot of “nothings” that kind people offer to try to make up for the huge, gaping chasm that stands in the wake where I was left to deal with this on my own. So many with tears in their eyes, telling me that they wish they could take all the bad stuff away with the wave of a hand.The hugs that envelop me, trying to hold me away from the edge of what’s to come.

A phone call tonight from a new friend who asks if he can check in again in a few weeks. He is one of a circle (a word I use with intention) who dedicate themselves to others on a similar path to mine, people like me who muster a smile and a thank you when wished “get well soon”. There are others around me who understand; who tell me often what I mean to them – leaving loving thoughts for me to hold onto. Knowing that no one wants to leave this life feeling alone. Letting me know that my time here has mattered. Trying to make up for those who have chosen to turn away.

I’m clawing at the distant dream of relief from physical pain, knowing that there’s only one way to escape it.That I must steel myself against this pain while trying to deal with the logistical setbacks. Trying to work my way through the minefield of administrative nightmares that seem to pile up higher and higher each week. The phone calls and emails that I’m just too exhausted to tackle most of the time.

The outpouring of “nothings” is everything. I try to go to sleep every night thinking of the day’s “nothings” so that I can shut my eyes feeling not quite so alone in this. And I pray that when the end does come, that my heart and my head will be filled with gratitude for those who offered to me what they might have believed to be something quite insignificant, but wasn’t at all.

The Difference A Foot Makes…

The victory of getting a wheelchair was short lived. In concept, it was wonderful news that social services was making an exemption for me despite my palliative status (which disentitled me to no-cost, loaned assistive equipment), but unfortunately the type of wheelchair isn’t suitable for me.

It’s just too heavy for any of my volunteers to lift into a vehicle, and has been sitting now for weeks idle and taking up valuable space in the middle of my apartment. So back it goes. And the red tape with insurance begins once again (I really thought I had dodged that bullet when I decided to forego any further experimental treatments, but here I go again despite perhaps not having the energy required for the protracted interaction with the insurance company and other parties involved with the application).

There are some places I’ve visited over the last few months that make scooters or wheelchairs available to their customers and I have availed myself. This has allowed me to run occasional simple errands with friends and volunteers (or maybe not so simple sometimes – some stores offer better quality equipment than others, not to mention differing widths of aisles for manoeuvrability issues). I’m grateful when I get access to a mobility aid, otherwise the trip has to be either shortened considerably or forfeited altogether.

The most fascinating aspect of the transition to a “less able bodied” individual has not so much been about equipment as it has about peoples’ actions and attitudes.

Shrinking down about a foot in stature when I’m in a wheelchair changes how many strangers treat me. Although there are some very pleasant surprises (kudos to two stores that helped me last week, I can’t say where or I’ll spoil a small Christmas surprise for my daughter. The service was outstanding, no pun intended of course), but often I’m treated as invisible or seemingly unworthy of the same courtesy as the customer ahead of me in line.

If you’ve met me in person, you’ll know me to be quite friendly to everybody. I enjoy making eye contact and sharing a smile with strangers. If someone appears to be ill-tempered I try my best to imagine that they’ve got a tough challenge on their mind and try to be friendly even when they’re not.

Sitting in a scooter or wheelchair a foot lower than where I’d normally be has been a learning experience to say the least. If I thought it was bad when I was walking awkwardly on my own or with crutches, I was in for quite a surprise! Very seldom does anyone make eye contact, even when I’m paying for a purchase. I walk away (wheel away to be more precise) – later asking whomever I was with if it was my imagination. Was I being my usual self? Am I doing anything to make the cashier or salesperson uncomfortable? I’m assured that I’m acting no differently than in other interactions with strangers, but yes – they’ve also noticed the difference in how I’m treated and relay similar stories coming from others with physical disabilities.

I’ve point blank asked trusted friends how they feel when interacting with a stranger who’s physically challenged, if they find themselves treating the person differently. And in response I’ve received some very honest and appreciated feedback. Some of it was difficult to hear, but I wanted to know.

It sounds to me like it comes down to what our families taught us, and what sort of exposure we’ve had before with the “less able bodied”. I hear that some had been taught not to make eye contact for fear that the disabled person might interpret it as staring. Others have been taught to engage as if the mobility aid were invisible.

The latter is a far more enjoyable experience for me, and it just might be for the person who’s a foot or so taller than me at that moment too. I’ll continue to offer a smile to anyone who’ll accept one. Just look down about a foot to find it.

Not Driving the Neighbours Crazy…

I have to be cognizant that absence from the blog may lead readers to wonder what’s happened to me, I get worried emails asking if all is okay at my end. Thank you for checking in on me :-)

This blog now averages about 200 hits a day, a good number of those being repeat visitors. I appreciate that so many of you are coming along for the ride on this journey. To know that I’m in the thoughts and prayers of so many means a great deal to me.

After reading my last post, one might have feared that I started singing and just didn’t stop! Not the case, I’ve had other endeavours on my plate.

The task that’s taken the most time is getting back on line with a computer. Some of you know that my laptop died during the summer (after a slow and painful decline), leaving me without access to much of my data, contacts, a printer, scanner etc. Quite a challenge when I had pressing legal issues to take care of.

I’m back on line thankfully and working away on getting programs reloaded, data synchronized – but the best part of all has been getting access once again to my libraries of photos! In case you’re not aware, before illness stopped my career short in its track I was a family and fine art photographer.

As the photos moved from my backup hard drives to the computer, images would briefly flash across the screen. It felt like I was greeting old friends. I was explaining to a friend the other day who was asking about some of my older images (and we’re talking up to thirty odd years ago) – I can remember with great clarity what circumstances surrounded the capture of each image. What the weather was like, what sort of mood I was in (and there were generally two modes – joyful or contemplative), who I was with (or had just left or was about to meet up with).

The images form a story of my life. And in the case of the portraiture, the stories of others as well. An opportunity and privilege that I will always hold dear.

Below I share the first image that was transferred over last night. Bronte Creek Park, just above freezing temperatures. Taken as I was leaving the park after what I considered a successful afternoon of shooting new images for a greeting card series. Bliss.

With a Song In My Heart...

The moment hit me with a slap, and brought tears to my eyes. 

The realization that although I've been playing music (quietly!) in my new place once in a while - more so for company, it was first time in almost two years that I was actually singing along. It startled me, I hadn't even realized that I was doing it - until Scrabble tried singing along in the cutest soft mewl (that little creature is one of the best things to come into my life in quite a while - human friends notwithstanding!)

On top of it, I was singing to a song that I've been skipping over on my play list since my marriage ended - it raised sad and painful memories. Tonight was different, it's almost as if I was embracing all that the song had ever meant to me (sorry, not sharing the name of the tune tonight - I have my reason which in time may make itself known).

It's been a challenging week, but there's been a reassuring sense of peace flowing alongside of the pain and difficulties. Lately I find that I'm giving gifts to myself. Burning a scented candle when it's just me, using the good dishes, cooking a meal for myself and a friend. Saying yes to an invitation out last night when I normally would have declined out of exhaustion. And singing (although many wouldn't consider it a gift, I'd like to believe that the kitten was singing along. However in all likelihood he was raising an objection!) 

It hasn't hurt that I've had some positive male attention in the last couple of days, letting me know that although what I see is a broken body - some out there consider me beautiful nonetheless. I shouldn't let a man's opinion dictate how I feel about myself - but heck, I could write a whole book on the impact that cruel words can have. The last bout of that kind of talk just about broke me and I've been trying to pull myself up ever since. 

It's helped that I'm filling my head with new ideas, knowledge and concepts - thanks to a dear friend I have an array of on-line college courses that I'm working through. At the moment I'm taking a course that covers the basics of what my daughter is studying at university, it allows me to feel a little more connected to her through the physical distance between us.

It helped that I had loads of kindness tossed my way when I ran into more obstacles last week. Maybe a little more than usual - but lots of it surrounds me at all times.

It helps that I'm now certain beyond doubt that I'm still me. My illness hasn't changed the core of who I am and what I believe in, if anything it shows me the path towards becoming a better person. Perhaps a reflection of those beautiful souls whom I spend my time with?

It feels damned good to sing out the clutter that's been stuck inside of me. I'll do my best to not hurt the neighbours' ears, but as for Scrabble, well - he can either join in or leave the room because I'm not turning back now.

Wanted - New Keychain...

When the previous tenants of my apartment handed the keys over to me, they were all together on one link. I handed one set over to my daughter, and not having a key chain myself - I kept carrying the new keys over the last few months as they were presented to me.

I misplace my keys a lot, not an easy feat in a small apartment but my friends who are in the same ballpark in age assure me they're often doing the same. I don't yet have any sort of an entryway table to lay keys and the mail down on, so those items usually travel elsewhere into the apartment. I'm just not yet consistent about the destination.

What makes my keys a bit easier to find is the bright purple colour of the keychain.

Last week one of my volunteers took me to the bank, a trip to my safety deposit box was required. At the customer service representative's desk (I don't think we're to call the staff tellers anymore, are we?) I searched through my purse to find my ID. In doing so (I too have one of those bottomless pit purses in which I'm sure I'd be as likely to find a sink stopper as I would old receipts with the way it looks some days in there), I laid my keys on the counter.

"Ready for the weekend there, are you Sandy?" piped in my volunteer. I looked at her quizzically, and she elaborated. "Always ready for a beer?" with a grin on her face.

All this time I've been going around with a purple beer bottle opener on my key chain, thinking it was a tiny ski. 

So for all of you who might have seen my keys, I can only imagine what judgements you might have made. No, I'm not tossing back Heinekens or Coronas to ease my pain, I've never even had a beer in my life. But this keychain confusion has led to some fantastic belly laughs with friends since this happened. If you can't laugh at yourself, there's always someone not too far away to laugh at you. It's far more enjoyable though to beat them to the punch.

Now I just need to find a keychain that won't scream substance abuse issues. For the record, I thought that the raised part of the keychain represented the boot binding. Clearly, I've not skied in my my life...but then again, not opened a beer bottle either!

Making Lemonade...

Maybe you're expecting me to offer up the adage "when life hands you lemons, make lemonade" - certainly a philosophy I try to follow but really, I'm going to make lemonade.

Despite a lot of challenges happening in my life (when is it not a roller coaster?) I wanted to share some of the lighter moments of the last few weeks. Some of these references might make no sense at all to you; in that case just ignore them - there are thank you messages in here for friends whom I know might be shy about me being any more specific.

Today a new friend dropped off a bag of my very favourite fruit, Meyer lemons - never having heard of them but he had read on Facebook how excited I was that they were back in season. Along with that a jar of Nutella (have I ever mentioned that particular obsession on the blog?) and also very thoughtfully, a new pain cream to try out. Never having tried to make lemonade with Meyer lemons before, it's high time I tried a glassful. As for the rest, they'll be impetus to actually cook something for myself this week (as terrific as the donated meals have been, I want to break out my pots and pans!)

A friend's Mom wanted to make sure that I was able to get something for myself that falls into the category of "I would like" rather than the basics that my very strict budget allows. A very generous gift which allows me a few treats that I've had to take out of my budget. First on the list? Some new sweaters and a pair of colourful shoes! 

My wheelchair arrived this morning (which will be invaluable in hunting down those sweaters and shoes...) I'm getting coaching on how to pull off a decent wheelie, something to practice when I can't sleep at night perhaps? Two additional assistive devices have been generously purchased by friends. One will be helping me avoid waking up with the "night gasps" (which are frightening episodes I could do without, thank you very much) with the purchase of the bed wedge, and another pair of friends are helping to ensure I can get more safely into the tub every morning. 'Cause the bathroom floor is hard and I break easily now!

Yesterday was quite a therapeutic afternoon, sitting by a campfire with a friend as we fed the fire. I brought the fuel. And for those who know where I was, the answer to the question is green and yellow.

An aforementioned friend enlisted the help of another to take me on another delightful virtual New York City excursion. There may be a few too many photos floating around of me as the Statue of Liberty, the one with the pumpkin I have to blame on the volunteer who leads me into the most trouble (but darned fun trouble...)

Six Feet Under, Season One with more to come. Yes, the person who loaned the DVDs to me can also see the humour in this. The funniest part is that it was her suggestion (I'm grateful that she so often forgets that I'm not well and we can laugh about the irony together).

There are so many other wonderful moments, but I'll finish with one that will be a long lasting reminder of what joys can be found in the midst of the messes. In my lap sits the cutest and furriest four pounds of adorableness, my new kitten Scrabble. My conversation with the group of palliative volunteers finally pushed me over the edge to adopt a wee companion, I recognized that I truly need to be needed. I need to care for someone to feel useful, and this little guy needs me. 

What has warmed my heart the most is that whenever a loud noise comes from the industrial area situated behind me, Scrabble makes a made dash for the safety of my lap. Being trusted as a safe place is the best feeling ever. And the tickling I get when he insists on licking under my chin in the middle of the night puts a big smile on my face too.

The Difference An Advocate Can Make....(corrected)

Correction to text below. Wow - what a error to make! A few paragraphs down I had stated that the latter (without an advocate) resulted in better health care. What I hope became clear in the sentence following is that I meant former - with an advocate results in better health care. Some who know the details of how I came to be without an advocate by my side may suggest it was one intriguing Freudian slip...

I'm bowled over by the volume of support coming my way after yesterday's post, thank you to all who took time to express outrage and share incredibly kind offers to help improve my situation.

Let me first give you an update. This morning I received a call from the occupational therapist who had visited yesterday. After leaving here yesterday - visibly upset by the rules which were working against me in trying to be as comfortable and independent as possible - she placed a lengthy call to her supervisors to ask for special consideration for my situation.

Her pleading worked, I'm now permitted to keep my wheelchair pad - and I get a wheelchair to go with it. As grateful as I am, I'm disturbed by the inequity in our health care system (and I have a few bones to pick with our family law system as well) when it comes to how rare and/or serious illness (and the unique situations that come attached to them) are handled.

I'm grateful for the wheelchair that should be arriving soon, but why shouldn't anyone in my situation have the same opportunities for mobility assistance regardless of which town, city or province they live in? How does it happen that a palliative patient can have fewer (or no) assistive devices available to them than someone who is chronically ill?

Having had far more experience in the health care system than the average citizen, I could write a book on the subject of inequities to be encountered. In my humble opinion, there are lots of wonderful aspects to our health care system in Canada - but there's also plenty of room for improvement for patients with rare illnesses.

And then there's the second point on my mind regarding what has transpired over the last two days.  Over the last years I've been a traveller through the health care system with both an advocate at my side, and without one. From my experiences,  the latter (I mean former!!!!) leads to better health care. I've come to the conclusion that there is absolutely no doubt about that statement. Someone who sits by as a second set of ears during appointments, someone who makes sure that  all questions are adequately answered, someone to think outside of the box when roadblocks are faced. Someone to spur insurance companies and government agencies to do the right thing. Should it really have taken me being interviewed last year by the CBC to get funding for one of my treatments? And I note that the interview wouldn't have even happened had I not had an advocate tirelessly working on my behalf. Every single step is a battle in itself, and now doing this on my own I find myself falling between the cracks over and over again.

It's all well and good if one is only remembering what I used to be capable of; I was a person who had perhaps an overdeveloped sense of right and wrong and would fight for fairness for all parties concerned in a situation. That person just doesn't have much fight left in her, sometimes just getting showered and dressed for the day has taken all the energy I had available for the day.

I thank my advocates who've stepped in to make today better. My occupational therapist who pleaded for rules to be bent, the friends who quickly offered to rent/buy the equipment I need to maintain a small amount of independence and better physical comfort. 

I'm grateful for the friends (and sometimes near strangers) who offer this help knowing how hard it is to me to accept it, and also know me to be a person who'll try hard to fix a problem myself before ever letting on that I need assistance. Stubborn old me has to admit it. I just can't get through the rest of this journey without others stepping in to take the reins when I'm too tired to hold them.

What Else is Coming My Way?

This is one seriously messed up set of circumstances that I try to maintain some equilibrium within.

One short week ago, I was speaking to a group of volunteers about how palliative patients can be assisted by maintaining some normalcy in life wherever possible, and how much it has meant to me that my team of volunteers has helped me in doing that.

A meeting with my occupational therapist was set up for today, requested by one of my nurses who is keenly aware of my declining health. On the list were the following items: a wedge for my mattress to hopefully allow me to breathe more easily at night (laying down causes shortness of breath, severe enough that I have to try to sleep sitting up on some nights), and a wheelchair since it's becoming increasing difficult to walk or stand for more than a few minutes at a time.

The occupational therapist also recommended some amendments to the bathroom to make bathing easier.

All well and good, yet our regional social services have recently changed their policy so that palliative patients no longer receive any assistive devices. I can have a loan for twenty eight days, but no longer. So I'd better plan on passing within the month or I'll find myself back at square one.

On top of this, the rubber wheelchair pad that many of you have seen me toting around gets taken away too. This has allowed me to tolerate the drives to hospital appointments in Toronto, to sit on harder surfaces for a short while. I've fought that battle for some months, but solidly lost that one today.

The suggestion was to see if my doctor would take me off palliative status in order to get these devices (??? You get help if you're not as sick?) In which case I'd lose my volunteers - so there go the outings that have brought me a lot of joy of late - so no point in getting that wheelchair. To add to this, if I move to Oakville (the neighbouring jurisdiction) I could have all the assistive devices I could want at no cost. I can't even afford many of the basics in the one bedroom where I'm living now, much less move to that affluent community. Moving from the cheapest place I could find with handicapped accessible doors is not an option.

My ex-husband's insurance might possible cover some or all of these assistive items, but the legwork is beyond my current physical and technological capabilities (getting around to the various suppliers to get quotes is a challenge, and the computer has died on me once again, so no printer, scanner etc.) On top of that I need to get a denial letter from the government plan (which I already know I don't quality for because of a short-sighted decision re Canada pension plan contributions when opening up my photo business ten years ago). If you live in my province, you're probably aware that filling that requirement will take months.

Is it any wonder that my head is reeling right now, wondering how the heck I'm supposed to manage all of this on my own? I've tried so hard to believe that life continues to throw challenges at me as part of a bigger plan. I'm getting to the point that the longer this goes on, the less I understand how one lifetime can be filled with so many obstacles. It's very difficult to get on with the process of just trying to do some living when one has to spend so much time answering the question being asked of why I'm still kicking around. It's an answer I don't have.

Sharing the Journey...

When I'd thought about the conversation I was about to have last Monday evening, I'd envisioned a lonely table in a bar too dimly lit to be able to recognize anyone further than halfway across the room. Two glasses, and a bottle of scotch.

For the record I don't drink scotch, nor have I ever. Outside of the occasional (as in maybe twice a year) half glass of wine, I don't drink alcohol; it leaves me feeling outside of myself and it's not a feeling I enjoy. I don't know why I equate solemn conversations with a good stiff drink - too many Hollywood movies I suppose filling my brain with such ideas.

In a previous post I'd mentioned that I'd been asked to speak to a group of volunteers being trained in palliative care. A brave move on their part to participate in this program, the word palliative can scare many a folk away and here were men and women who were embracing the idea of caring for patients with a poor prognosis.

Things happened pretty quickly last weekend starting with a call on Saturday afternoon from the training coordinator, asking if I would be up to speaking to his students in two days time. How does one go about preparing to have a conversation like this? To share with complete strangers what it feels like to be facing this journey? To let them know what I need and want from a volunteer?

The safest bet seemed to be to not overthink what might transpire. My first priority would be to establish that I spoke only for myself and my own experiences, I couldn't possibly come near to accurately expressing how other palliative patients might feel about their own unique situations.

I won't go into the long winded details of the hour and a half that I spent with this large group of caring and generous individuals. I went into it wanting to be of some small help (I feel pretty useless most days), but what I received from them was a far greater gift. I left feeling like I'd had that good stiff drink and had made new friends in the process, the welcome and the goodbye I received from the group lifted me to a place I'd not yet visited along this journey. 

My foremost goal had been to not scare these volunteers off the idea of caring for palliative patients; my participation in the evening felt like a great deal of responsibility. Turns out that we shared many fears. The fear of saying the wrong thing, the fear of not being helpful, the fear of offending, the fear of being misunderstood when ones' intentions are true.

There was a moment that struck me particularly deeply that evening. We'd been discussing what missteps (and I reiterate that I can speak only for myself here) can happen when strangers say things about my situation that I find difficult to digest. An example might be when I'm chided by a complete stranger for using the elevator when travelling only one level down, instead of taking the stairs like a person my age ought to. In their opinion I appear to be able-bodied (apparently if I can walk a very short distance into the elevator  and stand in it for a few moments I may as well be running marathons!)

There was a collective sigh of relief in the room when I answered the question of "have any of your volunteers made a misstep?" My answer came very quickly, and it was a decisive "No". 99% of what I need of a volunteer comes from the fact that each of these individuals were in that room on Monday evening. That they wanted to be a part of the journey for patients who have a rough road ahead. 

And an important detail, a good deal of the conversation was far from solemn - champagne would have been a more appropriate accompaniment from my perspective!

Showing up and wanting to be with me on my journey is just about everything I need wrapped in one beautiful package. I thank God and my lucky stars to have so many of these beautiful gifts around me.

A V-8 Moment (Among Others)...

If my posts a few weeks back about discovering what the buttons on my TV remote did made you wonder how I manage to match my socks in the morning, you'll love this story. I promised to post this one for my new friend S. What would my daughter call it? Epic fail? :-)

You've probably come to the conclusion that I'm not terribly keen on my new/old apartment. I've been here two months and it's not yet growing on me. Hopefully the hanging of some artwork with the help of friends over the next week will help make it feel more like home.

The one area of the apartment which I do like more than the rest is my kitchen. I wrote of the beautiful kitchen counters (which on move-in day I nearly cracked when I made the mistake of trying to lift my bowl mixer on my own and dropped it). The previous owners had renovated seven years earlier and had kept it in good shape. 

I hardly use a microwave, yet one sits above the stove where I'd rather have had an exhaust hood. To any of my friends who cook I'd grumble about how dim it was with that contraption in the way. It, and the stove both being black made it quite dark and difficult to see what I was preparing. So dark in fact, that I'd propped up a camping lamp on the counter beside the stove to be able to peer into the pot to see how far along my meal was.

One of my new volunteers heard this complaint when we were speaking of her own kitchen reno (finally finished, yay for S!) She stopped by earlier this week to take me for an appointment at the bank, but first came upstairs. S slipped off her shoes, headed straight for the kitchen and pointed to the control panel on the microwave. In a gentle voice, she said "Light?" A light button! Here I was thinking that was for an interior light in the microwave - lo and behold the space underneath was now brighter. "And fan?" A fan button! Although not a strong exhaust, it sure was better than the nothing I had before.

Who woulda thunk that a microwave was specially designed to make use of the space underneath? I know, stick with matching my socks...

Some of you know of what I was up to this past Monday evening. An incredibly moving experience, but I'm not quite ready to put it into words yet. I didn't want the participants and my friends to think that it was not worth posting about, quite the contrary - I feel it needs more time to fully sink in. Bear with me!

And if you don't get the V-8 reference, you're probably too young to remember when there were no microwaves in the kitchen either.

Just Accept...

At astounding speed, old friends are flowing back into my life and new friendships are blossoming. And God bless the friends who just keep hanging in there with me through thick and thin.

I don't know why all of this wonderfulness is happening, nor do I dare to question it. Thank you for all the positive energy being sent my way. The kindnesses, generosity and love lift me in a way I can't begin to explain.

'Tis a brave and courageous thing to join me on this journey, it makes me sad that I can do so little to reciprocate all that my friends and my support network do for me. So many of you are a good distance away and have expressed your frustration at not being closer to help with everyday tasks, please know that I feel your support and good wishes. And without question, this "back office" support helps a great deal too.

I'm learning slowly but surely. Just accept all that is coming my way, it's happening as it's meant to happen (and I welcome the idea that angels appear around me in human form, nothing could convince me otherwise anymore!) I don't know if I'm here for just one more day or another few years, but for those that are riding this out with me - I'm humbled and so very grateful.

And now, I need to go have a really good cry. Because that's just what I do when I'm feeling so overwhelmed with appreciation. Even though I'm mostly by myself in this apartment, my friends are making it impossible to feel alone on this journey.

The Men Who Restore My Faith in Men

Note – the bulk of this post was originally written about about two months ago, just before my Word files became inaccessible due to my laptop challenges. Events of this week launched me into a determined effort to find what I’d drafted. I suppose I could have rewritten it, yet I didn’t want to miss the essence of what I was feeling the first time I sat down to write it. I apologize for the length, it felt like I needed to get this all out of me tonight.

It’s no secret to people who are close to me that there have been men in my life who have treated me less than honourably. Some earlier in my life, others more recently.

Although there are those who stuck out as princes among men and treat me with great respect, kindness and love, I had over the last year and a half lost some faith in the opposite sex.

Yet there are men who give me reason to rethink this position.

Yesterday afternoon I received a call from the volunteer driver who had taken me to my morning radiation appointment. On the drive home with another patient I’d told the story I’d posted some weeks ago about listening in the oncologist’s waiting room to the older ladies discussing tooting on the bus (if you missed it, you might get a giggle out of it if you go back to my August 2^nd post).  Our driver said that I should write a story like that down, and I replied that I had indeed done so. I then shared details on how to access my blog and we then said our goodbyes when I was dropped off.

This call was quite emotional. I won’t share all the touching details of what he had to say, but he’d told me that he’d spent an hour reading my blog and wanted me to know that I could call upon him if I needed any assistance – beyond his role as volunteer driver for the Cancer Society.

Let me clear up something quickly fearing that any of you are getting the wrong idea. Mr. B spoke lovingly about his family (including his wife) on the drive to the hospital. This is nothing other than a decent man wanting to do something to make my difficult situation easier if he could.

And I thank the heavens above that this is not an isolated case. More and more I have men stepping forward with genuine offers of help. And not just offers, actions follow the kind words.

Neighbours who helped with household chores before my daughter and I had to leave the old house, men who helped with the yard sale, men who welcomed me and my daughter into their home when we had nowhere else to go, others who accompanied their partners who were visiting me and made themselves useful while they were there.

Men who use their connections to bypass the roadblocks that I run into on a regular basis.  Men who call, send emails and Facebook messages to check on how I’m doing and ask how they can help. Men who tell me that they will never understand how another man could put his wife through what I've experienced, and they apologize on behalf of the gender. That's a concept I don't quite get my head around, I can't imagine a woman apologizing on behalf of all others. But thank you all the same, it's touching and raw at the same time.

Professionals in my life who go well above and beyond the call of duty to let me know that I matter (let me specifically note my doctors and lawyers, I know that I’ve meant more than an OHIP invoice or a billable hour).

Men who didn’t blindly believe what they were hearing, but knew that there would be two sides of the story of what led to the end of my marriage. Those men especially earned my respect for acting on their own feelings when the story didn’t make sense based on what they already knew of me.

There is nothing romantic in any of these connections whatsoever – it`s just decent men being who they are. I’m immensely relieved to know that there are still plenty of good men out there, I trust that the women in their lives know what gems they’re blessed to have around to love and be loved by.

And a huge thanks to those of you (of both sexes!) who have been checking in on my progress with radiation, now nearing the end of the first week. Today it got a bit rough, it’s not easy being here on my own. I wish more than anything that I had a loved one here tonight to warm up some soup for me, rub my head (no pain medication can beat that for soothing me), holding me when an excruciating bout of pain hits. I don’t dare move beyond the bed right now. I wouldn’t in a million years wish this experience upon anyone, nobody deserves this. But bless those who want to make things better for me.

And back to now. The flood of support continues from both sexes, but today I want to continue with thanking the men in my life. 

B drove me to the appointment that I had a few weeks back with the oncologist; the one where we called off any further radiation due to the lack of success of the first round. When I went to find him in the lobby after my appointment I was visibly upset and he asked if there was anything he could do. At that moment I felt what seemed indelibly stained with sadness and loneliness. One of my toughest appointments ever and I’d had to go through it alone.

There were other passengers in the car on the ride home, for the most part I stared out the side window, tears welling up but not making a sound. I was dropped off in front of the building, after our goodbyes I made my way to the elevator. All I desired at that moment was to make it upstairs and into my apartment before I fell apart. I didn't quite manage that, but nobody was around to see the sobs seeping their way out of me. The door locked behind me, I fell into a corner where I must have stayed for the next hour. Sobs that I’d held back for months swept out of me. And then it was time to pull myself together again and muster whatever post-radiation energy I could muster to unpack yet another box.

A few days ago I received an envelope in the mail, my name and address handwritten. I didn't recognize the last name at first, but as I read the enclosed note it quickly came  to me that this note was from my volunteer who’d driven me to and from that difficult visit with the oncologist. I won’t go into details, but I tell you that it was a spiritual gift that lifted my heart.

This led to he and I sharing an hour with others this morning (and there are a couple of coincidences in there too), and then I was invited back to his home to meet his wife. It was a lovely visit, they've been married fifty three years and have lots of stories to tell of their life together. And it sounds like I’ll have a chance to hear more in the future; I’m delighted by that prospect.

I have a long list to thank for restoring my faith in men. I suspect you gentlemen know who you are. 

Deciding...

Thank you to the worried readers who sent notes of concern when it seemed that I had gone AWOL the last week and a half. I have my computer to thank for that. It's hobbled along for the last six months well enough that I could still write blog posts (but do precious little else on it), but last week it turned on me. So for the third or fourth time since the spring I brought it back to factory state and re-installed all my programs; not  sure how long it'll stay up this time. It's a mess of cables and wires to get even a blog post out of it. In addition to that, my iPad has hit Apple's wall of planned obsolescence, if I'm lucky apps will stay open more than a minute before crashing (that will explain my very brief emails of late!) Quite a long way down from working for a tech company ten years ago and having had all the latest tech gadgets at my disposal! 

In my last post I'd mentioned that I had a hospital appointment last Tuesday back with my care team at Toronto Western, I wasn't quite sure what I was going to tell them about the failure to respond to the radiation. In truth, I had decided some time ago but I had to get my head around it.

Radiation is to be the last experimental treatment I'll be trying. I'm done getting my hopes up, experiencing the side effects and dealing with the disappointment when the treatments haven't worked. It's time to get off the wild roller coaster. No more bone scans; there is no need to know where tumours have spread to - I recognize the pain and it doesn't help me emotionally or otherwise to get confirmation of location. Diagnostic testing, outside of regular blood work, pretty much disappears. Far fewer trips to the hospitals. To me, in some ways this sounds like a better quality of life. Pain management continues to be a struggle, however I choose to never again be the first ECD patient to try a new approach to the disease. It doesn't mean I won't sit up and listen if there's a positive new development in research, but I'm not putting myself through this experimental process anymore.

My doctor went through a few scenarios to ensure that I truly understood my decision, along with the repercussions of having signed my "Do Not Resuscitate" order months ago. I felt that we were most definitely  on the same page; it's time to let this take its course.

Some readers may disagree with my decision and you may of course do so. What matters to me is that my daughter and I are at peace with this, and we are as best as I think we can be. It's been a surprisingly freeing experience. 

My doctor at that appointment asked me how I felt about being a palliative patient, a question I'd never been asked before. I told him I'd prefer if it was heading in the other direction, but I can accept that it isn't.

That night I played the unique sentence game. "I'm washing sesame seed oil off the bottom of the cashew nut jar whilst thinking about what the label of palliative patient means to me". Top that one.

I continued to think about my decision over the coming days quite intently. Not once have I thought I'd made the wrong choice; it was an internal thought process about what the journey ahead might look like.

The day after my appointment I received a rather surprising phone call from the organization that provides my volunteer visitors/helpers (let me add that they're four incredibly giving women whom I'm grateful to have the chance to get to know better as we go along. All quite different in personality, the coordinator has done a fabulous job of matching me to these new friends). Might I consider speaking to the group who are currently undergoing a ten week course on palliative care about what a person in my situation might want or need from a volunteer? Quite a coincidence, but then again I really don't believe in those. 

I'm immensely honoured. To think that a group of people who've made a conscious decision to help, and spend time with palliative patients might be drawn closer to this goal - or perhaps pushed away, by what I would have to say is a big responsibility. 

There's more than a hint of irony to this. A year ago it was demanded of me to find a support group to help me be a better caregiver to my caregiver. You might need to read that last sentence twice, I had to make sure I wrote it clearly and accurately.To the point that I was marched off to the local cancer support centre to find said support group. I was being told that I had to be a better patient by the person who'd tell anyone up until shortly before that day that it was easy was to forget that I was ill because of my optimism and positive attitude (and a most defiant - and certainly aggravating at times to my family - mission to doing things for myself whenever I could). A huge point was being missed; I didn't want to be defined as a patient. I wanted to be a wife and mother to the two people who mattered most in my life. It was, and still is, me in here. A person who still wants to do what she can despite growing challenges, to love and be loved and continue to grow intellectually, spiritually and emotionally. And I suspect many others finding themselves in this position would offer the same sentiment.

And here I am now in a position of participating in the process of teaching volunteers how to support we palliative patients. Irony indeed.

Deciding to Not Decide

I've spent the last few hours sorting paperwork on my bed. When I had to pack up the house last spring, the contents of the filing cabinet were hastily placed in boxes for future sorting. I anticipated that without being able to work I'd have plenty of time to get the job done when we had a new place to live.

It hasn't quite worked out that way yet. Six weeks later I'm still unpacking. Mostly because I move as slowly as molasses these days, and secondly because I've run out of space to store things. However tonight I wanted to make a small dent in the piles and boxes of files.

It's been an evening of mixed emotions. I've come across my daughter's old report cards, cards and letters that she's written to me over the many years (it made my heart smile to see her earliest attempts at handwriting). Cards that I wish I hadn't have come across tonight (how does someone say that you made him the happiest man alive and looking forward to many more Valentine's Days together, and then less than three months later say that he couldn't stand being with me one minute longer and has felt that way for years? That one goes to the top of the heap for a bonfire...)

I also came across old performance evaluations from my tech world days. I'll keep one for my daughter to look at years from now so that she can be reminded that once upon a time I wasn't this shell of my former self. Back then my nickname at the office was "The Energizer Bunny" (I suppose that's still true to some degree, I am battery operated after all!)

What struck me was the commentary from various superiors, often noting my ability to stay calm, focused and decisive in challenging situations.

A sharp contrast to what I'm feeling this evening, at least as far as decision making is  concerned. A thoughtful friend took me out to run two errands today. One to the post office box, the other to Sears to get socks. I'd be ashamed to show you the bottoms of my feet the last few months, most of my socks are nearing holes in the bottom if they're not already there. No socks on sale today, but no way that I'm going near the place again on a weekend before Christmas. Sheer madness and very long line-ups. It wouldn't be the first time that I've found what I'm looking for, stood in line but had to abandon my intended purchase because I just couldn't stand anymore.Yes I know, suck it up Sandy and just get the darn wheelchair...

This small amount of walking has had serious repercussions tonight. If you didn't know where my knees belonged on my legs you'd be hard pressed to locate them with the swelling being so extreme. The weird colouration is spreading to the front of my legs, and the pain is overwhelming. A pain pill that the average adult should take only two of per day, I'm up to one every two hours day and night. What complicates things is trying to keep them down, they're strong anti-inflammatories that do a number on my stomach and tonight it's a heck of a battle to have them stay put. Note to self - ask medical team on Tuesday if there's an alternate delivery system, even if I have to inject like a heroin addict, I'm on board.

For someone who's normally good at making decisions, I can't make up my mind whether to head to the hospital or not. Do I keep pushing through the pain? Or go through the frustration of going to the local hospital only to be sent home again because they've never heard of Erdheim Chester and don't know what to do with me? Why am I writing a blog post right now instead? (the answer to that is simple. I just don't know what else to do with myself right now, and this is the best distraction I can come up with. And it helps me to feel less alone knowing you're out there reading this).

Time for another pain pill. Quite simply put, this is wretched.

Hadn't Seen That Before!

Never a good thing when your doctor tells you that.

This morning he'd just finished telling me that how disappointed he was that the radiation didn't work. That sadly the Cancer hospital had no other options to offer me; their research hadn't come up with anything that looked like it was viable for reducing my bone pain. I was being discharged as a patient there and would be sent back to the Toronto Western team for the "balance of my care".

Palliative speak. I've more or less become used to it, but today it hit especially hard. Although I know full well that the radiation didn't work, there was a part of me that was hoping that news would come today that that a different plan of attack might well offer me some relief.

We reviewed the bone scan results one last time. From here on in, it really doesn't matter where the tumours are and where they spread to - the plan of methodically irradiating them one by one for pain relief has been shot to hell. I'm not entirely sure if I care to have any more bone scans. I know where the tumours are, it's an all too familiar intense burn that feels like hot pokers have replaced my bones. And it's getting harder to bear every day, and I'll recognize the feeling when it appears elsewhere.

As we were wrapping up I was reminded that I was to show him the radiation burns. And that's when the look of astonishment crossed his face. "Sandy, I've not seen that before. It's got to be from the radiation given the location, but that shouldn't have happened". I guess nobody else has the fun of having baby giraffe legs.

The ride home with the Cancer Society volunteer driver and other patients was excruciating. I can say I'm pretty sure that I've never felt lonelier or more alone than I have today. I needed someone to hold me and tell me that it's all going to be okay. Even though we'd both know it isn't. Someone to hold my hand, wipe away my tears as I allow myself to cry out the pain, frustration and fear.

I'm not afraid of dying, I'm afraid of much more of this ahead of me. Knowing that this only gets worse.

From time to time it happens that someone will ask me about what symptoms led to my diagnosis. Once in a while, the person will have themselves convinced that they too must have Erdheim-Chester because they have leg pain and/or cardiac issues (and this happened again this week). Or I'm told that that's exactly what their Aunt Sally had, but she's all better now. Sometimes they ask for my doctor's name so they can speak with them to get confirmation that they too have ECD.

I try to be polite and suggest that if they're feeling pain or discomfort they most certainly should have it checked out. But I'm frustrated when others seem to be hoping that they've found the answer in an ECD diagnosis.

On the inside, I feel like screaming that suggesting that they have a very rare illness such as ECD is the very last thing they might want to think about. Pray, hope, wish (whatever works for them) that if it is something serious - that's it's something far more common. An illness that comes with a successful treatment protocol (or a protocol period), drug funding, answers, survival rates that are at least a touch more predictable.

I'm not being selfish wanting to have ECD all to myself, or dismissing the pain of others. It's me praying that others don't have to go through something like this where you just don't know what's going to hit next.

Trust me on this. You don't want to be the patient who's been told "We haven't seen that before". It's not a good place to be.

Just so you all know I've not completely lost my sense of humour today, I'll share an addendum to last night's post about the SAP setting on the TV. In trying to distract myself from the pain last night I was checking out what other buttons on my TV remote did. Lo and behold, there was one that took the picture from being all stretched out and distorted to being normal proportions again! The "format" button saved the day, I had on this one too been blaming the antenna. The setting had been on Zoom, when 4:3 makes people normally proportioned again...

You have permission to laugh at me on this one too, but for those friends who worked with me for many years in the tech arena (where I was either programming myself, or leading a team of techies) you're allowed to call me, laugh as hard as you like without saying a word and then hang up. I'll be laughing too.

In Case There Was Any Doubt...

You have permission to laugh at me. Uproariously.

I only get a few channels on the TV, and haven't watched all that much since moving in....but I thought that during the summer while we were between homes that descriptive audio (SAP) had been added to all the sitcoms I've watched as some sort of of hot new trend (which I found completely annoying).

It appears that I accidentally hit the SAP button when I was setting up the TV/antenna six weeks ago. It was only tonight that I realized that it was the same woman's voice on every show...

Yup, I've turned into a tech dummy. You know who not to call when your VCR is blinking 12:00!

Verbal Acrobatics...

3:30 am this morning I was still wide awake. Not the neighbours being noisy this time, it was that flippin' bone pain of mine. The sleeping pill I'd taken over four hours earlier was obviously having no effect, nor had that meditation CDs that I quietly (because I have no intention of starting a showdown with my neighbours) started playing when I realized this was going to be one of those tough nights. About 1:30 am I downed an extra pain pill - about four hours ahead of schedule but it's just one of those choices I have to sometimes make. Another one two hours later, no wonder my stomach is rebelling madly against me the last few weeks!

When friends and members of my medical team ask me how I deal with the middle of the night "creepies" (they offer a variety of monikers for the period of time when one should hope to be sleeping but aren't) I tell them I don't really get too bent out of shape about it. Being alone in the apartment doesn't help, but somehow I have to get through it.

Certainly I'd really rather do without the pain, it's escalating beyond pre-radiation levels and it's frustrating when the pain meds I'm allowed to take aren't making much of a dent (I'm allergic to the opioid family of pain relievers, what I can take I liken to trying to deal with the pain of a broken limb with baby aspirin).

I've been studying on the internet  about neuroscience and pain. Had I realized many years ago how fascinated I was by the science of the brain I would have taken a different path in university rather than liberal arts. My daughter has changed her major at school to Molecular Biology and Genetics and I hungrily grill her to share what she's learned each week.

It would seem that I'm on the right track for trying to diminish my pain when pain meds aren't doing the trick. You might laugh, and of course you may - that's the intent of this exercise for myself.

When I was a child, I used to play a game whereby I would try to come up with a sentence that likely had never been said by anyone before in any language. For instance, "my pet giraffe's grandmother sneezed on my pinwheel cookie whilst I was watching the flea circus perform during a raging thunderstorm". You need stop wondering where I get my wild dreams from, the roots obviously stretch way, way back!

This game was introduced to my daughter when she was very young, and it was a great diversion for her when she was feeling sick or sad. These days we'll play it from time to time as a silly way to pass the time; it's guaranteed to bring a smile to our faces.

This game has also had reasonable success for me when I'm trying to deal with pain when it's becoming intolerable. Not nearly as much fun to play when I'm here by myself but it does seem to help.

More often these days I find myself reviewing real life situations and discovering that my day reads just like one of my imaginary unique sentences. I laughed to myself as yesterday the following thought popped into my head. "I'm scrubbing seasonal decorative gourds in the sink before heading off to a palliative patient support group at my local hospice, where they generously provide gluten-free snacks". I'd bet my right arm (so far tumour free, so it's not such a bad deal) that those words have never been strung together by anyone in any language!

An update on where I go from here for treatment. I have no idea. Tomorrow I see the radiation oncologist, I'm not looking forward to sharing that I only had a short window of pain relief. But I get to show off my seasonally decorated legs (scary old witchy gams?) I showed the burns to a friend last week who delightfully shares our penchant for stringing random thoughts together - together we came up with an hilarious fictional story for how Sandy got those vibrantly coloured legs. It involves a walk in the forest, an anthill, and bugs that explode with permanent dye when annoyed by a llama.

Next week I see my Toronto medical team. Now that one I really dread. Strong hopes were pinned to the radiation, and after so many experimental clinical trials it's really down to me as to whether I'm even open to trying something else. A few days to go and I'm at a loss for what I want to tell them.

In the meantime, perhaps I ought to give serious thought to writing childrens' stories to keep my mind occupied. What child wouldn't enjoy a story about a pinwheel cookie eating giraffe who enjoys the flea circus? Now if only I could learn to draw...

I Should Count Too...

I realized a couple of nights ago (and was going to write about this subject before other blog post ideas hijacked this one) that I've been in this apartment almost a month and a half and have cooked myself exactly two meals. Yup, just two.

Not that I've been starving at all, friends very kindly had brought by plenty of meals for my freezer and I relished every last one of them. They were truly a blessing when it was hard to even keep my eyes open for more than an hour at a time during and following radiation treatment.

However my definition of cooking however doesn't include heating food up, so in truth I really haven't cooked in this time (and I should note that we were treated to truly wonderful meals when we were left without a home for the three months. Talk about overstaying an invitation to dinner!) I love to cook, what holds me back?

One very simple reason. I love to cook for people I love and care for. I discovered many years ago that there was a very important difference for me in those extra words. When  my daughter was with me, it would be time to break out the fresh ingredients and go to town. On the nights that she was with her father, I'd be eating well if I reheated leftovers but it rarely got to that point. Have you heard of kitchen sink meals? I was the queen of them, eat whatever I felt like grabbing out of the fridge and eating it over the sink so I didn't dirty up a plate. There were some very odd combinations to be had over the years!

Then I remarried and I was in heaven. Trips to the grocery store at least every two days to ensure that I had the freshest ingredients possible, scouring my vast collection of cookbooks and taking great pleasure in knowing that I was putting nutritious and varied  meals (in six years there were very few repeats) in front of my beloved family. And as a bonus they indicated their appreciation for my efforts at every turn.

Some who prepare the family meals may take offence at being given kitchen gadgets for Christmas, but I always looked forward to peeking into my stocking. My husband each year would pay a visit to Williams Sonoma to learn about the hottest new items, and described the type of meals I'd cook to the salesperson so that they could point him towards an appropriate section with tools to make food preparation easier and more fun.

Nothing made my heart swell more than to see my family well fed and nurtured in the best way I knew how. I felt useful, goodness knows with having to give up the job I loved and the ability to do many other tasks this was one thing I could still do fairly often. And if I may say so myself, I wasn't half bad at it either.

Sadly, as many of you know my husband left to find another woman to cook for him. Or if that fell through he'd rather do take-out for the rest of his days than have stayed by my side. And I returned to kitchen sink meals.

My dearest friend woke me up to a concept earlier this year that I'm obviously still not clamping on to, but intend to try to move towards. She is often on her own when her husband is travelling abroad for long stretches of time. It would be easy to do the kitchen sink thing, but she with few exceptions will every night prepare herself a proper meal. She'll have likely perused her cookbooks, shopped earlier in the day and set time aside to prepare the recipes without shortcuts. I've been lucky to over the years sample many of her creations; it blows me away that she puts similar effort into her meal whether she's surrounded by loved ones or on her own.

This dear friend values herself and her efforts (and she's been effective at trying to convince me that I should be doing the same for myself). If I care about myself, then I too should be making an effort to feed myself well. It's been a very difficult road to reach even this point, before leaving me my husband told me in no uncertain terms how little he thought of me (and shared his thoughts with many others as I'm finding out more often as time goes on); it's challenging to recover from such a bashing and I'm not sure I ever truly will. But I am trying. Knowing the truth helps (a nod to friends who oft repeated the phrase "the truth will set you free" to me as I plodded through the fall-out).

Now of course meal preparation comes with heavy restrictions. Almost three weeks had passed before I was in a grocery store this past Sunday. Transportation and the energy to shop are the biggest part of the battle. A very tight budget for groceries another, many ingredients that I would have used in the past are simply gone from the equation. Then I discovered as I was making these two meals, the physical strength that I was once had has been severely diminished. I have to come to terms with the fact that although I love potatoes - there will be no more meals that require the chopping of raw ones. It was quite a pitiful sight watching myself trying to cut through a couple of Yukon Golds this week.

Stirring for longer periods of time is now out too (or even keeping an eye on the pot). I tried pulling a chair up but the ergonomics just don't work with this stove, a singed forearm is what I have to show for my efforts.

Where does that leave me? With all the best intentions to look after my nutritional needs better, but lacking the tools to consistently follow through. It's now almost 7 pm, and I'm hungry and tired after a trip to the outside world today to visit the hospice day program. Time to check out the freezer...

Tomorrow will be better.

S - thank you. For everything you do for me,  and mostly for telling me regularly and often that I still count, especially to my two S's. I'll eat better, I promise!
S, I gave birth to - thank you for offering to chop potatoes for me when you're home from school. I  know what potato dish you'd like, I'll make a whole bunch for you with your loving assistance.
J - for making it your personal mission to pack some weight back on me, and for succeeding. Deliciously! (and Happy 25th Anniversary)
K - for trying so hard to make sure I eat well, and not forgetting about the most important food group - chocolate!
D - Dagnabbit, I will own my kitchen again! Thanks for the encouragement last night on the drive home.

An Abundance of Blog Fodder..

A few hours ago, I was prepared to sit down and write a post on a subject that's been on my mind of late. It'll have to wait (this might just be a multi-post evening!), a couple of other topics jumped the queue!

My Facebook friends know that I've had "neighbour challenges" to put it plainly. I suspect that these neighbours don't even know that they're causing a noise problem - although I have my suspicions that it's one of the reasons that the previous tenant made a move. It's that bad. And almost always during the night when I would rather be sleeping.

Which made the knock on the door a while ago especially appreciated. On the other side of me lives a couple, I'd met the husband last week. He's a pleasant British man and he was letting me know that I might want to don earplugs tomorrow. The tiles in the bathroom are to be pulled up and there's gonna be noise, and lots of it apparently. His gestures led me to believe he might be bringing in the pavement repair crew from the city with jackhammers and all. Those tiles must have threatened to not go without a fight! A kind thought to let me know what's on tap for tomorrow.

He might have wondered what I was doing in my pajamas at such an early hour (I hid as best I could behind the door), but the truth is the alternative would have been less neighbourly of me. It's difficult to tolerate even a slight touch against the radiation burns today, every turn in bed last night resulted in me waking up cursing the sheets against my legs.

Then came more fodder.

A friend emailed to let me know that it appeared that a message she'd sent this evening to a political figure voicing her displeasure showed my email address as the sender instead of her own. I don't disagree with my friend's thoughts on the matter and joked that as long as she visited me in jail after being arrested for speaking out against the government, all was good :-)

How did this happen? Months ago when I was left on my own at the old house, I quickly realized that I needed help (and lots of it) to get many household tasks and errands done. I did something that is quite uncharacteristic of me, I asked for the help I needed from friends who'd reached out in the months prior to offer their support and assistance. For me, that was a huge deal. I felt failure in being unable to do what seemed to me were basic tasks. Taking out the garbage, getting groceries, opening up jars whose lids wouldn't budge with the little strength I have left in my hands and arms.

It was likely the most humbling experience I've yet to go through, and not one of those friends I reached out to has ever made me feel anything other than they're glad to help. They know I had to reach deep down to find the courage to ask.

The need for assistance has only grown over time, and now the help of friends is supplemented by social services, the Canadian Cancer Society and other volunteers who give so generously of their time.

Back to asking for help. One clever friend thought up a solution to help match up the offers of assistance with the need; an on-line calendar. A group of friends gain access with a password, and can anytime check what appointments I have booked etc. (and any of these friends have permission to give me an earful at this moment, I realize that I've not updated the calendar in a number of weeks. Radiation has knocked my on my backside and I've taken a break from most of my regular appointments).

We surmised that she must have been checking my calendar and didn't realize that she was still logged in to my account when she wrote the email.

My friends find the most ingenious ways to entertain me. Intentionally or otherwise!

As a side note: it was mentioned to me that the email address I provided for private messaging is buried deep in a post from months ago. If you would like to contact me but prefer not to do so publicly please email me at sessa1@live.ca (the address is listed in the blog header now too).

My original subject matter will have to wait until another day, I've become very tired (and hopefully I'm exhausted enough to tune out all noise for the night!)