Just One Story From CarerLand / CancerLand

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Guardian article ... a caree becomes a carer ... and the trials and tribulations of " Every day " life which results.

Thanks to Wendy at Chil4Us ... she spotted it before me ... well , at my age , not as fast as I used to be !

" Who yer kidding granddad , just get on with it ! "

https://www.theguardian.com/lifeandstyl ... -the-carer

Scared, angry, inept – that’s me, the carer.

As Ian Whitwham recovered from a stroke, his wife was diagnosed with cancer. In his new, reversed role, he charts the rollercoaster of her illness


I care. I’ve swapped roles with my wife and become a “carer”. When I had a stroke she was the “carer”. Now I have recovered, she has got cancer. It is my turn to do some “caring”. I suppose this must be the “until death us do part” stage of proceedings. I’m not sure I signed up for this bit – certainly not for this caring lark. I don’t want my role formalised in this way. It’s modern cant. Surely I’m only doing what a mate does. I don’t “care”. This has nothing to do with saintliness. I feel mostly rage, a savage impulse to howl at the moon.

Anyway, I’m lumbered. The hospital calls me a “carer” and I’ve got a little red card to prove it. “Chemotherapy Alert Card”, it also says.

We learn that “the complications of chemotherapy are potentially life-threatening”. They include neutropenic sepsis. This can cause death, as it’s known in the trade.

I must contact the 24-hour helpline immediately if any of the following events occur.

“The patient has a temperature of above 37.5C.”

I take her temperature continually. I’m rubbish at it. Jill gets irked. The process causes much tension. Then the temperature goes up. I get irked. I panic and ponder the helpline. The reading was “none” the other day. I had put the thermometer skewwhiff in the ear.

“Either you’re dead, or my watch has stopped.”

This is no time for levity.

Or “if the patient feels shivery or flu-like”. More than nebulous.

Or – get this – “if you feel generally unwell”. Come on. Pints of chemo and lashings of radiation and anyone might just feel a bit under the weather.

We’re never not going to be calling 999.

All this ambiguity is scary enough to prompt another stroke. My poor daughters will be charging around the hospital looking for their croaking parents in separate wards.

It started two months ago …

Jill, daughter Anna and I wander along to find out the results of the dreaded x-rays. “This is like death row,” mutters Jill. People come here every day to find out if they are going to die soon. What a life! We wait. And wait. Waiting in tropical, tense, insulting rooms is a huge part of caring. I blame that Hunt fellow. I glance at last year’s OK! or Hello! magazines. Jamie Vardy is presenting his baby.

Then we are softly summoned. An oncologist with a Giaconda smile calls us into a hushed room. A doe-eyed nurse stands by with a box of tissues. I count silently to seven. My lucky number. Done it all my life.

Never works.

We make the smallest of talk, while mice click, computers twitch and x-rays surface on screens like creatures from the deep.

My goodness, there’s an elephant in the room.

Then the oncologist seems to say, “I’m afr …”

Wham! That’s it. I hear the “F” and my mind seizes on it like a rat trap. “Afraid.” Then we seem to hear words like “confirmed”, “malign”, “mass in the lung” and “squamous cell carcinoma” – the ears don’t process them, the eyes blur, the mind goes dizzy. It feels fell, like Hopkins’s: “… cliffs of fall / Frightful, sheer, no-man-fathomed”.

The oncologist tenderly holds Jill’s hands. She weeps. Anna weeps.

The oncologist tells us this is by no means a death sentence. “There are ‘exciting’ developments in lung cancer.”

I can do without this kind of excitement.

We say goodbye and then we all say nothing and wander back and curse things numinous and the random cruelty of the gods.

“But I never drank, smoked or drugged …”

Jill is in the Kingdom of the Sick.

She will be “fighting” cancer.

Balderdash.

It is fighting her.

Jill’s treatment begins. For a month we catch the tube and thread the carcinogenic city streets to the hospital. She goes to “bloods”. She gets weighed. She can’t lose weight. We must forget her diabetes and plump her up like a sumo wrestler. The chemo ward is full of bone-tired, gaunt and wasted patients being pumped with yards of poison by jolly nurses for hours on end. I bring Jill occasional coffeeless coffees and dying sandwiches. She doesn’t want them. Or me. So I visit a place where carers care for carers. It is cringingly well-meaning and full of women who nod a lot and say “yes” before I finish a sentence and suggest I go Nordic walking or attend a mindfulness course. That should do it. I return to find Jill in a deep stupor. I shake her alive in my now established caring manner.

“Come on! Time for your radiation.”

She smiles at the horror of it all.

She must now be carted off to a dark, windowless dungeon for a blizzard of radiotherapy. She is given enough to poleaxe a rhinosaurus. Perfect storms of the stuff. I wait and wait and feel pointless. Jill returns after 15 minutes, dazed, fried and irradiated and we totter back home. Arm in arm, we negotiate the gridlocked streets. Our shrunk shanks can’t beat the green light on a pedestrian crossing and we are abused by a prime arsehole in a Range Rover.

“Cancer patient! Stroke victim. Carer! **** off!” we roar, maturely.

It makes us howl with laughter.

We resolve, whatever happens, to finally make that trip to New Orleans and dance under the light of a Cajun moon.

Jill lies most of the time in a foetal heap and I wake her up regularly for slugs of morphine. I ponder a nip. I then offer her doughnuts, Jammie Dodgers, fryups, bangers and mash or Jelly Babies. “Sod off!” I apply ice-cool flannels and offer mountain waters and she tells me the same. But she must drink fluids. She will die if she doesn’t.

We have water fights.

Still, we’re nearly there.

Only two weeks of this medieval farrago, this “caring” to go.

Then … Wallop! Catastrophe!

The two-year-old granddaughter discovers Jill upside down on a sofa. She thinks it’s hilarious. It’s delirious. Is it posthumous? Is this one of those complications of chemotherapy? Neutropenic sepsis? The carer steps in. 999! Ambulance round in seconds. Jill’s blood sugar levels are stratospheric. Something has gone mightily toxic. We zoom off to the acute ward. I’m told to scarper.

I visit next day at dawn. Jill is still hallucinating. She seems to be in a liminal state of waking and nightmare. I am very frightened.

Voices, almost disembodied, come at me in the crepuscular light.

“There were two figures at the end of the bed,” Jill confides.

Ah.

“They were priests.”

Ah.

“They were saying, ‘At last you’re here, then.’”

Christ.

Heaven. Hell. Charon and Cerberus?

Or her daughters, who have morphed into angels?

The figures were, of course, doctors.

One is talking to me.

“Are you the prime carer?”

“Er … Yes.”

“Are you next of kin?”

Isn’t this a bit precipitate?

“Would you want her resuscitated?”

Shut up!

It gets marginally better.

“We’ve done some brain scans.”

Ah.

“And there are no traces of clotting or cancer.”

I didn’t ask, but jolly good. Marvellous.

Blotto to all this, Jill munches on a mango stick.

It gets dreadfully worse.

A doctor returns.

He whispers at me: “Cancer traces in the brain.”

This caring lark can be a bit of a rollercoaster – you don’t know if you are coming or going.

Twenty seconds later, the wicked messenger returns, antic, breathless, hysterical and apologetic, like Basil Fawlty.

“No! No! No! Forget it! There aren’t!”

Whoops!

“I’m so so so so so so sorry.”

“Typo!”

As typos go, this is going it a bit.

I forgive him completely. I want to kiss the clot. Hug him. Relief trumps rage. Joy trumps despair.

Jill, still oblivious, continues to munch on another mango stick.

I pop out to find some water – or gin or crystal meth …

The blood sugar levels come down in two weeks and we’re let loose again into the world. Jill is now a fully fledged diabetic and I have fully fledged caring duties. Insulin. I’m now blood-sugar monitor. Tricky. I can’t get blood out. Maybe she has none left. At last, a trace! I take a reading. It’s ludicrously high. I summon a district nurse. She is great. I have been doing it wrong.

We Uber our way to the hospital for the final two weeks. Throughout it all, we have not risked the usual desperate questions about the dread tumour, disappearing, shrinking or spreading. How can an oncologist say or not say what we need to hear? Dispense fate with an x-ray? Break mortal news? How do patients hear it? In the kingdom of cancer, caution must rule.

So I walk on eggshells, more alert to a shiver of subtext, a lurch of semantics than in any excavations of some postmodern literary text.

“There is some evidence that the treatment is working.”

We feast on this crumb. We ponder the semiotics of this scintilla of fact. We don’t dare take it further.

The NHS has been wonderful. Faults and weaknesses are a consequence of grotesque workloads and crippling fatigue. Random acts of senseless generosity are everywhere. They put my caring to shame. So do my daughters, who have been magnificent. The granddaughter is also a tonic. She still thinks it’s all a lark.

But I never realised it was such a slog. You’re multitasking 24/7 – morphine monitor, needle monitor, insulin monitor, blood-sugar monitor, temperature monitor, pill counter, chef, shrink, semantics analyst, blocker of prurient attentions, general shock absorber – among other things.

Still, “caring” is a breeze compared with the horror of being the patient.

All I care about it that we get out of this somehow alive, make that music trip to the Mississippi delta and dance to Cajun in New Orleans.

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Always a little more " Interesting " when reading of actual human beings' experiences ... first hand ?

New Orleans ( Naw Leans as the natives would say ) ?

Don't forget to drop into my beloved Ain'ts and meet " The Man " ... Drew Brees !
Very descriptive. In a way, everyone in Cancerland has the same landscape - and yet each person's is unique to them. I can see similiarities to my landscape in the article, and differences.

It does totally 'take you over', that is for sure. It's called in Cancerworld 'The New Normal' - you adapt, you have no choice.

My metaphor was that of us driving merrily along in a car along the Motorway of Life, heading for the next event, in our case a half-term holiday, and then suddenly the road ahead is blocked, and we are forced off a slip road marked 'To Cancerland'. For a while we are desperate to rejoin the motorway, until we realise that we will NEVER rejoin that motorway again. The sliproad only leads off, not back on.....

The frustration and fury are overwhelming.
A moving account. I do hope they get to New Orleans