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Medical bungling after cancer surgery and Graham Parker's "Stupefaction."

2/22/2018

I have yet another story about medical stupidity and medical goodness…When I left the hospital, I still had a catheter. I needed a procedure (a CT cystogram) before it could be removed. This procedure checks the integrity of the bladder after a surgery. The procedure should have taken place 14 days after the surgery.

The residents on the floor forgot to book it. The discharge summary, written by the residents, said it was the surgeon’s office who was to arrange the procedure. The surgeon’s office thought the residents would do it. The urologist's surgical report said he would arrange it. The residents forgot to even copy the urologist on the discharge summary. So in the end, no one did it. When 21 days had gone by and I had heard nothing, I called the urologist myself in frustration. His office said they knew nothing about this referral at all. The urologist had to start from scratch, so he sent a referral to radiology, which took another week to process.

So Tuesday February 20th was the date of the cystogram. My next task was getting a doctor to give an order to the VON to authorize removal of the catheter. Because prolonged catheter use can result in significant functional problems, the VON also needs an order to follow me after removal. But my surgeon was away on holidays, as was my family doctor. Even though Nurse Practitioners are empowered to give orders to the VON, mine was “not confident” and would not do it. The urologist did not want to commit without having a written report. The VON came over to help, but had to leave because there was no order, job undone. So what did I do? Andrew and I jumped back in the car, drove like demons to the hospital, ran into the radiology department, and asked if the Radiology Nurse could help me. I was practically ready to go postal.

The Radiology Nurse was a delightful young woman. She said, “I have read your book, and I would be honoured to help you.”

So now the catheter is out! I am human again! Now we wait to see if I have complications.

On another note of human kindness, a VON has been caring for me very assiduously. She too has recently read The Cancer Olympics. She has called frequently, arranged supplies, ensured quality care from others, called doctors, and has been tremendously supportive.

So again, terrible care and great responsive care – just the same as my first cancer. It upsets me to think that if I had not taken on all the calling myself about the catheter, I would still be waiting, oblivious to the neglect. Sometimes even superhuman patients cannot get care. When will doctors and their receptionists grasp that patients who have just undergone massive surgeries cannot be expected to do all that heavy lifting? Why can’t people just take responsibility for the jobs we pay them for? What THE HELL is happening to patients who cannot speak English, are elderly, or are in too much pain to endlessly lobby for basic care? IT IS NOT FAIR!!!

And another crazy thing – the Gastroenterology Department at QEII called to say that they are offering me a colonoscopy appointment – from a referral sent to them in APRIL OF 2015!!! Three years ago! “We are backed up,” they said.

Enough ranting. Today’s song, on the theme of stupidity, is from Graham Parker and the Rumour’s amusing tune “Stupefaction.” I had his The Up Escalator album in 1980! Graham Parker preceded punk and new wave music. His quirky blue-collar image and sarcastic lyrics are believed to have been a major influence on other famous British musicians, namely Elvis Costello and Joe Jackson. To me, he is very Tom-Petty-esque. Yes, when it comes to healthcare, I often “get to feeling like a wheel without traction.”

The sun is burning, it never changes
The people look up with nothing in their eyeballs
They stare at billboards as if for guidance
There's something wrong here I can't but my finger on
Same thing, same way, everyday,
Stupefaction
oh yeah

Drive out on sunset but nothing's moving
The lights are green or is that my imagination?
The people sit there
cameras without action
I can't see the point but I see the attraction
Same thing, same way, everyday
Stupefaction
oh yeah

We're going to get clear outa this some day
Because the comfort's so appealing
the bodies so revealing
Just get to feeling like a wheel without traction
Stupefaction
oh yeah

I ask the landlord how much you making
Don't you get tired of just taking and taking?
I ask the neighbour why are you so stupid?
Giving us those dirty looks and trying to murder cupid
Same thing, same way, everyday
Stupefaction
ah yeah

We're going to get clear outa this some day
Because the comfort's so appealing
the bodies so revealing
Just get to feeling like a wheel without traction
Stupefaction
oh yeah
.
Turn up the TV turn up the radio
Turn up the volume nothing seems to matter
Lay back and slumber bring out the number
Ask the operator what spell we are under
Same thing, same way, everyday
Stupefaction
ah yeah

Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Same thing same way everyday
Stupefaction
ah yeah
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey
Stupid stupid stupid hey hey hey.

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Recovering from #cancer surgery and The Beach Boys' "Vegetables."

2/12/2018

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I have been home after surgery for two weeks. Recovery is slow but steady. Today I hope to have the last of my staples out. Still have the catheter – no date yet for removal of it. Apparently some patients can have them a month or more. I have a sporty sized one that attaches to my leg to allow me to get around, and a huge one for bedtime. The bedtime one is great to prevent that middle-aged-lady-getting-up-at-nighttime-to-pee thing, so I tend to get a really good night’s sleep at least.

While I recover, I am working through the finishing touches of the audiobook of The Cancer Olympics. I gave a copy of the book to my VON nurse and she texted me this morning to say that she is shocked and hooked after Chapter One.

For two more weeks, I must eat a low fibre low residue diet to allow my intestines to heal. This is sometimes called a “white diet” – white rice, white meat, white bread, white potatoes. No raw fruits or vegetables. Afterwards I can branch out and start normalizing food intake. My appetite is getting better, such a blessing after months of barely being able to face food.

No word yet on future chemotherapy. I expect I will learn more in about four weeks. By report, my oncologist favours doing no chemo at all under circumstances like mine. He would recommend treating the next recurrence when it becomes obvious. I myself want to do something, as survival is better with adjuvant chemo after a massive surgery like this. I wonder if I can do the relatively mild Xeloda therapy I did last time. After all, although it was an undertreatment, it put me in remission for seven years. Or perhaps I could do a clinical trial. One thing seems certain: I cannot do FOLFOX anymore. The neuropathy in my hands, feet, and tailbone is simply too advanced.

A funny story: after I got my staples out, Andrew and I went to a Chinese food buffet. Guess what my fortune cookie said? “Enjoy your good health every day.”

Today’s song is on the subject of food. Now that my mouth sores have just about healed, I can taste things again. Although my vegetable range is limited by this “white” diet, I still pine for them. So this song is “Vegetables” by The Beach Boys, from their 1967 album Smiley Smile. Apparently, Brian Wilson was on a health craze at the time and wanted to promote veggie consumption. An interesting sidenote about this song: Paul McCartney came by the studio while it was being recorded, and he is the one making the sound of crunching celery in the background. Foreshadowing of his future vegan lifestyle!

I'm gonna be round my vegetables
I'm gonna chow down my vegetables
I love you most of all
My favorite vege-table

If you brought a big brown bag of them home
I'd jump up and down and hope you'd toss me a carrot

I'm gonna keep well my vegetables
Cart off and sell my vegetables
I love you most of all
My favorite vege-table
Oh oh taba vega vegel

I tried to kick the ball but my tenny flew right off
I'm red as a beet 'cause I'm so embarrassed

Oh oh dumb do dumb de dooby do
Oh oh dumb do dumb de dooby do
Oh oh dumb do dumb de dooby do
Oh yeah
Oh badumday oh dumb do dumb de dooby do
Oh badumday oh dumb do dumb de dooby do

Chomp chomp chomp chomp do-do-do do-do-do
Bop bop bop bop do-do-do do-do-do

I know that you'll feel better
When you send us in
Your letter an'
Tell us the name of your
Your favorite vege-table

I know that you'll feel better
When you send us in
Your letter an'
Tell us the name of your
Your favorite vege-table

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Facing the outcome of cancer surgery and Beck's "Waking Light."

2/3/2018

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It takes a long time to resurface after surgery. Even now I am a little woozy. I am home at last after eight days in hospital. It is time that I composed a post that describes my outcome.

The palliative procedures went brilliantly. The urinary diversion and hysterectomy was fine. I did not need a total vaginectomy, only a partial which is conventional for hysterectomy. Unfortunately, the vagina and rectum were fused by scar tissue, and needed to be separated, so now I have a temporary ileostomy. I called my previous ileostomy Flipper in The Cancer Olympics. Flipper #2 may or may not be reversible. I will know in about 6 months.

But the really bad news was that cancer cells were found in my pelvic sidewall. This is inoperable. The culprit for this invasion was indeed the right internal iliac node, as suspected in The Cancer Olympics, which implies that I was stage IV all along. It was already too late for me seven years ago, thanks to Doctors One, Two, Three and Four. My surgeon Carman held my hand as he delivered this bleak news.

Carman holds out some hope that further chemotherapy might help me. We will discuss this in February, when I meet with my oncologist in several weeks time.

Today’s song is by alternative artist Beck: “Waking Light.” The hyperlink is to a live performance on The Tonight Show. This song was one of the finest releases on Beck’s masterpiece 2014 album Morning Phase for which he won the Grammy for the Best Album of the Year (snatched from under the noses of Beyonce and Ed Sheeran). He also one Best Engineered Album and Best Rock Album of 2014. “Waking Light” is a psychedelic song about emerging, about waking up. It resonates with me for how it feels to surface after my long surgery, with so much unknown, and so much ending, and so much beginning.

Waking light
Your profile in shadow
Raise yourself to the morning alone
Night is gone
Long way of turning
You've waited long enough to know

When the memory leaves you
Somewhere you can't make it home
When the morning comes to meet you
Lay me down in waking light

No one sees you here
Roots are all covered
There's such a length to go
And how much can you show?
Day is gone
On a landslide a-reeling
I’ve seen your lamplight burning low

When the memory leaves you
Somewhere you can’t make it home
When the morning comes to meet you
Rest your eyes in the waking light

When the memory leaves you
Somewhere you can’t make it home
When the morning comes to meet you
Fill your eyes with waking light

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Medical bungling after cancer surgery and Graham Parker's "Stupefaction."

Recovering from #cancer surgery and The Beach Boys' "Vegetables."

Facing the outcome of cancer surgery and Beck's "Waking Light."

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