[The Life of Shaun #466] Leaving on a Jetplane

It's my last night in Illinois - all checked into my flight to New York tomorrow.

It's been an amazing, awful, exhilarating and exhausting almost two months here.  I am ready to go; ready to have a break in the Big Apple, ready to get one step closer to home, ready to be out of the house where Mom died.  But I am also sad to leave.  The last weeks my family's lived together under the same roof again, something I never thought would happen again once we were adults.  Mom's pull brought in aunts, cousins and friends on a regular basis.  It's been chaotic, but full of life.  It's something I know I am unlikely to experience again, and I treasure it.

But London is growing impatient with me, only grudgingly allowing me a visit to her younger sister without becoming too irate.  I am filling up the first weeks back in London with reunions with friends and favourite places.  I can't wait to get home to London, to Shadwell, my flat, my flatmate, my life.  It's weird to think that this current reality will seem so fleeting once I've left, as everything does in life's rearview mirror.  But forward is our direction of travel, eh?

With that - onward, ho!  New York, pour me a cosmo, here I come!

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #465] In lieu of flowers

Hi all,

A number of people have written to ask for details about services.  Per Mom's wishes, we won't be having a viewing or a memorial service.  Mom wanted those she loved simply to get together, drink, and have a good time with memories of her.  Dad, Lara, Lisa and I will be going up to Fish Creek, Wisconsin next weekend to spread her ashes on a hill overlooking water, as she requested, in a place that is full of good memories for her.

For those of you who would like to do something in her memory, I suggest making a donation to It's a Pittie, a rescue and education mission, in Mom's memory.  Mom had a bleeding heart when it came to animals in need, so a donation to this organisation would mean a lot to her.  Mom's "third daughter" (my cousin, Janine) is a head volunteer there, so Mom was a supporter.

If you would like to do so, you can hit the donation button at the bottom of this page:

https://rescueapittie.org/get-involved/donate/

Otherwise (or in addition), raise a glass to Mom when next you celebrate!

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #464] 361 days

Mom died today at 11:04 am, just shy of a year from her diagnosis.  Yesterday, our amazing hospice nurse had been over for her regular visit.  In that meeting, she discussed the times people "choose" to die - not as in total control, but within the constraints of their reality.  I sceptically accepted it as benign comfort, but I think Mom died exactly when she wanted to.  I won't lie about the last days, they were awful and hard - but they were few.

We decided yesterday that someone should stay with Mom each night, just in case she came out of it and needed something.  Dad took the first night, and as a result, slept with his wife through the last night of her life.  The next morning, he drove down to pick up Mom's twin so she could be here with Mom, and during that time he was away, Mom died.  She died not unexpectedly, but before any of us could be scared about it, with all three of her children with her.

This year, despite the cancer, has been an awesome year.  We all spent so much more time with Mom than we would have otherwise, so many nights with friends and family, a surprise birthday party, countless games of cards and even more good memories.  And that's one of the things that really affected me; I love my Mom wholly, and consider myself so lucky to have her as my Mother.  I imagine most of us do with our mothers, but what hit me unexpectedly over the past year was the wave of words and expressions from others about how great a woman they thought Mom was as well.

To that, I'll leave with words that capture Mom better than I ever could myself.  After Mom was diagnosed, I was designated her secretary and handled everything having to do with paperwork, mail and eMail.  In that first week, she received one eMail that expresses so well why I am lucky to be her son:

"When I think back to my childhood, many of my best memories are of times I spent with Shaun, and you.  You were always the kind of mom I wish mine had been.  My mom was great, don't get me wrong, but there was something about the way you loved and understood your kids, no matter what, they never felt they had to hide who they were from you.  As my children grew into teenagers, you were the inspiration for the kind of mother I tried (and mostly succeeded) to be."

I love you, Mammy Spammy, and miss you already.

Shaun

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For those wishing to give something, Mom was never a flower type.  What you can do is donate to It's a Pittie, a rescue and education organisation for pitt bulls near Mom's home in Manteno, and where her "third daughter", Janine, is an active volunteer.  Mom always had an open heart to animals, and a donation to this organisation would mean a lot to her (donate button at the bottom of the page):

https://rescueapittie.org/get-involved/donate/

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Mom, her husband, kids, and one sneaky granddaughter.

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #463] Live, Laugh, Love

Mom's decline from a surprising burst of energy Friday to today has been steep and sudden.  Friday night was family night, with Janine and my Aunt Judy (Mom's twin) coming over.  We had a great dinner, Mom ate pretty well, and we played cards (Mom kicked our asses, by the way - and we were not playing nicely!); Mom was alert, joking and smiling, giving us high fives.  It was a great night, but at the end Mom started to fade, and putting her to bed was the same choreographed traumatic dance it'd become in the days prior.

Saturday she slept more of the day than not, but was still up for dinner and cards, and even had part of a margarita.  But she barely ate and Lara did most of the work as Mom stared at the cards.  Sunday she only got out of bed in the morning because her sister was still here, and she wanted to spend some time with her before she left; that was just about 90 minutes.  We tried to wake her up at 5:00 for dinner time, and she wasn't budging.  Then again at 8:00 as she wanted to watch a movie, and she tried to be awake, but couldn't.

Today, Mom is nearly comatose, figuratively, if not clinically.  She's mostly asleep, only occasionally opens her eyes, and she is having delusions.  She'll smile at times when she recognises a story or someone she likes, and sometimes she tries to talk, but it's mostly unintelligible.  It's stunning to us how fast this happened, how quickly we lost the woman, the personality, that we knew as our Mom.

As discordant as it may sound, this rapid descent into an unaware state is a mixed blessing.  In the past week, it seemed as if Mom was approaching the edge of where the amount of good she was able to have each day would no longer outweigh the pain and indignity she was suffering.  We know from several experiences of friends the alternative path this story could take, the unknowable and unbearable stretch of time, bedridden as the pain grows and becomes ever more agonising.  

Our Mom's had a wonderful life, full of close friends, full of more joy than sorrow, and certainly full of love, given and received.  We want her to have as wonderful a death as she can.  These past six weeks, despite all the pain and sickness, have been wonderful.  Mom had her family, the thing that truly brings her joy, living at home with her to share and enjoy her life.  It may sound odd, but they have been some of the happiest days she's ever had.  Could anyone ask for a better way to go out?

Cheers,

Shaun

Mom enjoying a cigarette with her twin sister and Dad in the smoking lounge we built outside; this is the last pic we have of Mom from a good day.

Mom's life motto, hung on her wall.

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #462] Switch

Last Wednesday or Thursday, my sister called me up from my basement "office" to help Mom get out of bed.  She went from having had relatively good days to not being able to move one of her legs at all.  That day, and since, Mom's needed to pretty much be carried from bed to wheelchair and back.  Her days in the chair are punctuated by frequent dozes; except when she is directly and immediately occupied, she'll often have trouble keeping her eyes open, and her naps are longer than before.  She's also stopped eating as much, and fairly often throws up what she does.

Since it was such an overnight change, we hope it's just that she's caught whatever germ we've been passing around the family, which has laid us low in bed as well.  But we're also aware that these are all signs pointing towards increased deterioration.  Mom's lovely hospice nurse, Nishita, was on holiday last week and after seeing Mom today after a week's absence pulled Lara and me aside to discuss what she saw, too.  In addition to the familiar signs we'd noticed, she could see the weight loss in Mom that our daily contact has hidden from us.  Though no one can know these things with any certainty, she wanted us to know that it's likely Mom's good days are drawing short, possibly as little as another week or two, and she's increasing her visits to twice a week.

Seeing Mom the past many days, none of us are surprised; the change is marked.  But then again, at other times, she's quite peppy - nagging Dad and going out in subzero weather to smoke - the most positive signs Mom can show.  So we don't know - Mom's already doubled what they thought without much treatment - she could be kicking around for a while yet.  But we're carrying the knowledge she mightn't as well.

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #461] How are you?

It's a question I've been getting a lot lately, so I thought I'd answer more broadly.

I am however Mom is.  When she's having a good day, I am too.  About five days ago, Mom had a really bad day; she was trembling and sobbing from the pain, and we ended up doping her up pretty heavily to get her through it.  But since then, we've had pretty good days, at least with the pain mitigation.  We're honing in on a regular and (so far, touch wood) effective rotation of her meds that keeps the worst of the pain at bay.  Mornings are the worst, as she has the longest period without regular "top-ups", so we have a routine to get food, morphine and pills in her as quickly as possible.

The disease is definitely progressing, though.  She has several golf ball-sized tumours protruding from various places, and these have grown noticeably since I arrived a month ago, and we see new ones starting to rise.  They get red and sore, so we have to be careful to avoid putting pressure on them.  Mom's legs have continued to grow weaker and she relies on us fully to help her up from bed and to her wheelchair and back; she can't walk more than a few steps, even aided.  Amazingly, for a lung cancer patient, her breathing is still fine.  We have an oxygen tank on hand, but she's not needed it yet.

So how am I good these days?

It's odd how your perspective changes when caring for someone you love.  I don't think much about the big picture of what's happening, I just think about what Mom needs right now, and that's what I do - that's as big as my world is.  Every now and then, my perspective pulls back, usually when I am thinking about Mom when she was healthy, and that's when it can hit.

Mom's spirits are still high.  I don't know where she pulls that out from, but she laughs and jokes a lot, and loves playing cards with us and working on her puzzle.  She still goes through all the trouble and effort to go outside and have a cigarette, so we know she's OK!  So there's still life to be lived with Mom, and we are all enjoying living it.

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | shaunism.blogspot.com

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[The Life of Shaun #460] Good riddance

Not sure how 2012 went for everyone, but I know I won't be sad to see the backside of it.  A lot of good things happened this year, but not a moment felt carefree and happy; it's been dispiriting and exhausting and I am ready for it to be done.

But as hard as it's been, it'd've been endlessly harder without the friends and family who've reached out with kindness and caring.  And to all of you, thank you for that.

I hope you all have (or had, for my antipodes) a great New Year's Eve.  Fortunately, Russ is visiting and will be doing his darnedest to help me ring in a better 2013, or at least to drown out 2012.  

And with that, as my friend Alan put it: "Die, 2012, die! I will dance on your grave tonight."

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | www.nocirc.org

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[The Life of Shaun #459] Coley Christmas Chaos

Christmas with the Coley clan has been great; typical chaos has ensued, but somehow it all came together.  We were a little sad because Mom had three great days leading up to Christmas Eve day, but yesterday and today haven't been as good (but much, much better than the bad days before her good triad; we're never sure what each morning will bring).

Lara, Lisa, Alberto and Mihalis made a fantastic Christmas dinner, ham and turkey, myriad sides, and Aunt Judy made her famous sunshine cake.  I've realised Christmas Eve is the best  day of the year when you have small children as it's the only night they want to go to sleep early.  We closed out the night with plenty of peace and quiet, and several hands of cards.

So a very nice holiday here in the Western suburbs of Chicago.  Russ is coming out for the weekend and NYE (look out, Chicago!), so the festivities will continue!

Cheers,

Shaun

Me and my cousin Janine getting things started.

The Coleys (and a sneaky grand daughter...).

Mom's twin, Aunt Judy, and Mama.

The whole clan!

Me  smiling - someone must've just offered me wine!

________________________________________________________________

Shaun H. Coley | At large in Naperville, IL | www.nocirc.org

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[The Life of Shaun #458] Aldwych

A couple of weeks ago, some friends and I embarked on what Richard called "the equivalent of going to Buckingham Palace for transport geeks": a tour of the disused Aldwych (né Strand) Station.  Aldwych was the Southern terminus of a short shuttle train that ran from Holborn to the Strand/Aldwych, and was the bastard stepchild of the planned tube routes and the ones that eventually emerged.  As this route can comfortably be walked in under ten minutes, it has always been more an expensive dedication to a plan than a useful transport link.

The station was in use until the mid-90s, when it retired and took on a more successful second career as a training centre, model for other station layout testing, and movie set (V for Vedetta amongst the recent examples).  The end came when a lift needed to be replaced and a £3m pricetag was attached to the project.  As the ridership was around 400 people/day at the time, the shutters were drawn on one of London's obscurest urban idiosyncrasies.

The six of us duly oohed and ahed at the disheveled station, the original wooden ticket booths, fading posters, sections of test tile; we chatted with other like-minded Londoners and tourists alike, all smiling and inexplicably happy in the way a kid is on Christmas day; we posed for pics, took pics for others; pontificated about the overground extension to Clapham completing the overground circular and other transport successes and follies -- and all the while it never escaped us that we'd each just spent £20 to look at a tube station.  Money well spent.

Cheers,

Shaun

An old tube map, showing the Aldwych appendage.

The lift that brought the demise.

Old tube posters.

My favourite of the old tube posters - I think people still haven't gotten the message, at least at Bank.

Appropriate.

Jim, me, Richard, James, Alexi and Javier in our glory.

Me surveying the older platform.

Way out.

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Shaun H. Coley | At large in Naperville, IL | www.nocirc.org

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[The Life of Shaun #457] Return to Naperville

Advent has brought me back to the Midwest.  I've agreed an arrangement with my manager to work remotely from here for a while to be by Mom for the holidays and after, as needed.

I arrived on Tuesday, after a two-day layover in New York to renew my driver's license, to a much-deteriorated Mom than I left a month ago.  When I saw her last, she was thin and walked slowly, but was good overall.  She's now so weak she needs help any time she moves.  We're getting ready to relocate her to the main floor of the house so she won't have to go up and down stairs anymore.  But by far the worst thing is the pain.  The cancer has spread everywhere; Mom has tumours all over her body - arms, legs, buttocks - everywhere.  One in her arm is pressing on a nerve, which causes her terrible pain any time she moves her arm, so much she screams out sometimes.  We have to be so delicate with every move with her, the slightest pressure causes her agony.  It's like moving delicate glass.

We're working with the hospice doctor to find the right combination and rotation of methadone, morphine and ibuprofen to mitigate the pain; some days it works, other days, like today, it doesn't.  And that's been the hardest thing - seeing my Mom crying from pain and not being able to do anything about it.  It's so awful.

There was a thought that I would return to London at the start of January for a few weeks if Mom were doing well, and then come back here later.  But she's too bad already, so I will be staying here into the new year.  I have some friends who'll be visiting the area over the coming weeks, so have myriad punctuations in my schedule to look forward to and distract me.  And Trader Joe's are doing a roaring trade in red wine with the Coley family.

But despite all the negatives, of course I am so glad to be here.  Our family haven't done Christmas all together in I don't know how many years, and it's really nice to be here all together. Stressful, at times horrible, but mostly nice.

Cheers,

Shaun

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Shaun H. Coley | At large in Naperville, IL | www.nocirc.org

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