The Cancer Olympics
  • About the Book
  • News/Blog
  • About the Author
    • Press about Robin McGee
    • Videos about Robin McGee
  • Contact
  • Reviews
  • Where to Order

Heading into cancer surgery and U2's "Lights of Home."

1/22/2018

Comments

 
Picture
This will be the last time you hear from me before my big surgery on Thursday, 25 January.  Scots among you will recognize this as Robbie Burns Day!  All followers, Scottish or not, should have a dram that day and think of me.

The meeting I had with officials from my local hospital regarding my misread CT went well.  I feel good about it.  I prepared a graphic but dispassionate impact statement about what happened to me because of the error.  They shared their quality structure and initiatives, which I was curious about.  Unpacking what happened, and what should happen going forward, will be a process.  Discussion of my actual incident will await further review, and will be the subject of later meetings.  My main objective for the meeting was to demonstrate a collaborative and conciliatory attitude.   Hopefully, such an approach can result in real improvements in local radiology quality, patient safety, and appropriate error and apology practice.

Another shocking medical snafu – with only two days before surgery, I still had not heard from PreAdmissions Clinc.   Without processing by this clinic, surgery must be cancelled.  I, the family doctor, and the surgeon’s office all called the booking office to find out whether I was booked.  No response after days.  In desperation I called the main switchboard, who did not know where to direct me.   So I asked to speak to someone – anyone – in PreAdmissions.  That person said that the booking clerk had been out sick for days and she had no replacement, so calls to her were not being checked or returned.   I now have an appointment in the last possible slot.   If stories like this do not terrify you about healthcare, they should.

My surgery is on Thursday, 25 January!  The surgery I am expected to have will be extensive.  I has a nickname “MOAS” – the Mother of All Surgeries.  Typically, it takes 8-14 hours, and can even be as long as 20 hours.   I can expect to be in ICU for a few days, and then on that horrible WW1 field hospital ward on the 9th Floor of the VG.  Barring complications, hospitalization is usually 10-12 days, depending on multiple factors.   Recovery is estimated to take 2-4 months.  I will need systemic chemotherapy again, starting 6-8 weeks after the surgery.  Ugg.

Peritoneal metastasis of colorectal cancer usually result in death within 12 months (which has already elapsed for me).  Chemo can extend that to 24 months median survival.  Surgery can add another year or so to that.  Online, I have known 15-year survivors, but also those who died within the year of this surgery.  So it can cure in rare cases, but most often results in buying the patient a little more time.
​
I would like more time!   I am taking my son and his girl and her parents on a river cruise down the Seine in France this July.  If I last long enough, I also plan to rent a villa in Tuscany in 2019, and invite friends and family to come along.   And I hope to travel in our little Alto trailer to some of Canada’s National Parks with Andrew in 2020 on the deferred leave I planned for.  And I would like to go back to work, if I could.  Dreaming about those adventures got me through some very tough chemo days, and hopefully will sustain me through my surgical recovery too.

As anyone who has ever had a loved one in hospital knows, someone must be by the bedside of the patient.  My years of work in patient safety taught me that over 30% of patients who enter hospital experience some form of medical error – most often medication error.  However, that risk is significantly reduced if someone - anyone – is sitting by the patient.   Andrew will be with me much of the time.  We have a friend with a nursing background who can also sit by until the 28th.  We are hoping friends can visit to give them a break – a meal or a few hours of rest – it can be a real boon. 

This surgery carries a 3% risk of death.  I love my surgeon Carman Giacomantonio to bits – always have.  If he cannot save me, no one can.  Some will recognize him as one of the heroes from the Epilogue of The Cancer Olympics, in his efforts to create standards of care for cancer detection and treatment.  It may be a strange thing to say, but if I end up dead or really damaged, I would rather become so under his hands than anyone else’s.

So, everyone, I will see you on the other side.  (I mean the other side of surgery!) 

And today’s song?  Here is “Lights of Home,” from U2’s recently released album, Songs of Experience.  It speaks of dread, and of hope, and of pushing forward into freedom.

I shouldn't be here 'cause I should be dead
I can see the lights in front of me
I believe my best days are ahead
I can see the lights in front of me
Oh Jesus, if I'm still your friend
What the hell
What the hell you got for me
I gotta get out from under my bed
To see again
The lights in front of me


Hey, I've been waiting to get home a long time
Hey now, do you know my name?
Hey now, or where I'm going?
If I can't get an answer
In your eyes I see it
The lights of home
The lights of home

I was born from a screaming sound
I can see the lights in front of me
I thought my head was harder than ground
I can see the lights in front of me
One more push and I'll be born again
One more road you can't travel with a friend
I saw a statue of a gold guitar
Bright lights right in front of me


Free yourself to be yourself
If only you could see yourself
If only you could
Free yourself to be yourself
If only you could see yourself
If only you could
Free yourself to be yourself
If only you could see yourself
If only you could
Free yourself to be yourself
If only you could see yourself
If only you could see

 
 

Comments

Preparing for cancer surgery and Stellar Kart's "Nowhere to go but up."

1/11/2018

Comments

 
Picture
The results of the pelvis MRI are in, and were interpreted for me by my surgeon. 

There is good news and bad news.  The good news is that the mass reduced in size by a very small amount from last MRI: possibly, the first 5 rounds of chemo got most of it.  He anticipates being able to resect and reattach the ureter relatively easily.  The bad news:  he thinks this surgery brings with it a reasonable risk of an ostomy.  Either a temporary one, as I had last time (described as "Flipper" in The Cancer Olympics), or a permanent one, depending on how much damage he is forced to inflict as he operates.   He says he will do everything in his power to avoid those outcomes.  He does not want to use the intraperitoneal superheated chemotherapy, as he fears this will seriously compromise my healing, given that he is operating on radiated tissue which is already compromised in its capacity to heal.

Currently, I am working through the stigmata left by all those months of harsh chemotherapy.  It did very strange things to my hair.  It made the hair on my scalp come out in regular handfuls, necessitating the shaving of my head.  It caused a soft down to grow on my face.  Bizarrely, it increased the length of my eyelashes.  These are not cute “Betty Boop” eyelashes, more like “Elvira Mistress of the Dark” eyelashes – that is, they grow forward, then sideways.  The upper eyelashes are so long in places they actually touch my eyebrows.  It is freakish.

Chemotherapy also compromised my toenails and my feet.  The neuropathy is terrible – numbing pins and needles encase them, and occasionally jolt up my legs.   It also resulted in strange cracks like little slices on the soles of my feet.  I could not walk over much of Christmas.  I was able to get in quickly with a very sweet podiatrist.  He cut out a huge wedge of imbedded toenail that had been stabbing me repeatedly and thwarted healing.  He told me that he has seen cancer surgeries cancelled by infected toenails, so he was glad I got help as soon as I could.  

And now to try to build myself back up before surgery on 25 January.  I am valiantly trying to do 30 minutes a day on the stationary bike and ellipse machine, to improve my lost cardio.  I also hear that one needs biceps and triceps strength, to lift oneself out of bed.   So I will try modest weights.   I once was very strong – I am a long long way away from what I used to be.   I have nowhere to go but up.  As chemo recedes into my rearview mirror, I will get a little better every day.   I am really looking forward to the day I can eat and actually taste food.  And drink!

I have an appointment in two weeks to meet with administration and the clinical head of radiology of my local hospital to discuss the false negative CT I had last December, which so severely compromised my cancer care.  I have written a one-page victim impact statement for them, as I believe the patient’s experience should be part of the analysis of adverse incidents.  I am curious as to how it will be addressed.  I will keep you posted as to how that goes.

“Nowhere to go but up” is the song of unusual Christian punk band Stellar Kart from their fifth and final 2013 album All In.   It is chosen today to reflect my current dynamic of being at the bottom of functioning, but striving for a better alternative.

Running through every open door
But always missing what we’re looking for
Searching everywhere to find it
Never full, never satisfied
Never really understanding why
To win your life you have to lose it


Its time we realize were going down
Cause falling’s like flying till you hit the ground
So meet me at the bottom
Where we’ve got nowhere to go but up
Nowhere to go but up
Its the perfect place to start from
Where we’ve got nowhere to go but up
Nowhere to go but up


We can find a way out of this
Cause I will fight and never call it quits
So tell me, are you fighting with me?
So what’s it gonna be?
Is this the end or is it the beginning?
The beginning


So just keep on going
Keep on moving
Don’t let ‘em keep you down
Don’t let ‘em keep you down
So just keep on trying
Keep on fighting
No one can keep us down
No one can keep us down


So meet me at the bottom
We’ve got nowhere to go but up
So meet me at the bottom
Where we’ve got nowhere to go but up
Nowhere to go but up
Its the perfect place to start from
Where we’ve got nowhere to go but up
Nowhere to go but up.

Comments

    Archives

    December 2022
    September 2022
    August 2022
    May 2022
    March 2022
    December 2021
    October 2021
    July 2021
    May 2021
    April 2021
    February 2021
    January 2021
    November 2020
    September 2020
    July 2020
    June 2020
    May 2020
    March 2020
    February 2020
    December 2019
    October 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    September 2017
    August 2017
    June 2017
    May 2017
    February 2017
    December 2016
    October 2016
    August 2016
    May 2016
    February 2016
    January 2016
    December 2015
    September 2015
    July 2015
    May 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    May 2014

    Categories

    All

    Author

    Robin McGee: psychologist, author,
    and survivor.

    RSS Feed

Proudly powered by Weebly