I Get Knocked Down But I Get Up Again

October 2014

I was back at work after maternity leave, one week in. The jaw-dropping heart-clenching tax bill had just arrived. I was chairing a meeting of sixty fellow GPs for the first time. Lightning struck our TV and internet box. Life was pretty stressful.

So I wasn’t too surprised to find myself suffering physically. But instead of my usual somatisations of neck pain and dodgy tummy, I was getting night sweats. Every night. Oh well, I thought, a new one for me. 

My bed-partner had had the odd night sweat in the past, possibly more in relation to a lengthy celebration of a Liverpool victory rather than stress. So not that often really. And anyway, my neck soon started acting up, so that seemed normal. It wasn’t really normal though, because this time the pain was shooting out to the tip of my shoulder, and was excruciating. That had never happened before. Despite the severe pain, my shoulder was working fine. Weird. I phoned my physio who suggested an MRI. 
The first of what turned out to be many scans. 
It was actually incredibly relaxing, lying in the tunnel listening to Chumbawumba, with the magnet clanking loudly, round and round and round. And sure that scan was normal, so the physio and I did our usual thing on my neck and after a few sessions I was back to normal. 
But the night sweats persisted. Laundry is a challenge enough in our house, without adding superking sheets to every load. 
After another four weeks, my weight had gone down from “ooh isn’t this great” to “eek this a bit scary.” The stress levels had eased off, so there didn’t seem to be a good explanation for it all. 
So off to the trusty GP, with my opening line being “I’m here for you to talk me down and tell me I don’t have lymphoma.” The plan was she would do bloods, they would be normal, I would stop stressing and the sweats would go away. And I would stay a beautiful size 10 forever, effortlessly. 

The bloods were okay, only okay. A bit anaemic, one liver test a bit high which could mean low vitamin D, hormone tests normal so not menopausal. All fairly straightforward. Except I’m never anaemic, even in pregnancy. 

One week later, I’m back with the GP with a pain in my side. We’re both thinking, “she only has this now because the liver blood test was a bit off, wouldn’t have thought of it otherwise.” But she duly poked in my general liver area and indeed an’ it was tender and sore. Poking in my general bowel area was also a bit tender, so the little eyebrows were beginning to raise a bit (“this one’s a flaming wimp”). All the same, easier to get an ultrasound to find gallstones than to have to wonder whether they were there or just in my head.

So another week later, ultrasound scan, much less relaxing than the MRI. A woman, for whom the word inscrutable was invented, tried to prevent her little eyeballs from popping out of her head while she made small talk (radiographers never make small talk). She asked things like, have you had this pain for long, did you ever have an ultrasound before, so is this pain around long, what about any previous scans, but sure you’re well otherwise? I’ll just check this bit here, your GP will hear from the doctor soon...In hindsight what she was saying was HOLY SHIT THAT DON’T LOOK GOOD.

Multiple Heterogenous Masses

November 2014

Three hours later and the GP’s number shows up on my phone. Hmmm. “They think you might have a few haemangiomas, you’ll need an MRI with contrast to figure them out. Hmmm. Access the brain database; haemangioma - benign, livery, usually incidental ie not symptomatic....knowledge base ends.

So usually on their own, usually don’t cause pain, usually not a problem. Fair enough but that doesn’t quite match my situation. Let’s get the MRI to get it all square. Sure I love MRIs. 

Waiting for the crowd to phone me with MRI appointment, usually they are very quick to get you in, nice private xray place with nice private charges paid for by nice private medical insurance. No word from them by the next lunchtime. Phoned. No referral received. GP kindly sends referral again. They phone back. Can’t do that scan until January, is that ok? Eh, probably not, might try elsewhere. GP kindly does referral for Elsewhere, along with copy of ultrasound result. I pick those up from her next day to fax off myself. Read the ultrasound report while standing in the porch at home. Thursday afternoon, around 1pm.

“Multiple heterogenous masses” it says.

Brain database says; WTF?? system error 040. Reverse, reverse.

I think I’ll be getting that MRI fairly ASAP at the Elsewhere. Fax off the stuff on Friday, they call me and say how’s next Wednesday or Thursday? I say sure Thursday so since I’ll be at work on Wednesday, and the babysitters will be back from their current jaunt.

Grand so that’s that.

Meantime I think to myself maybe I’ll just check a few of those old blood tests again, just to  be sure. And I’ll show the ultrasound report to my trusty colleague and see does her brain react the way mine did. Sure enough, eyeballs popping a bit while mouth is saying all sorts of nice reassuring things. But yes let’s do the bloods. Frighten my poor nurse by thrusting out what I consider to be excellent veins at her and vaguely saying something about anaemia but you’re grand I’ll write the request forms myself. 

Phonecall to work the next day to just check about anaemia result, feeling breathless. “Yeah the haemoglobin is grand, platelets fine, sure that’s great. But, eh, the liver tests not so good now.” Oh. How d’you mean not so good. “Em, like, quite not so good.” Right. Panic. Barge into GP’s waiting room with two children attached, no no I’m not looking to be seen right now, god she’s very busy, but maybe I could wait a little bit just for a quick chat? Games on iPhone, eating of carpet will have to do to entertain children. Brain not really coping. GP rightly says we can do no more until the MRI, but the bloods might not be that bad, let’s do them again on Thursday and bring them to the lab straight away then to get a quick result. Yes good because we are going to Paris on Friday, just the two of us, yes let’s try and get sorted on Thursday so we can enjoy the weekend.

A Bad Liver and a Broken Heart

“Sick” off-school 6 year old (i.e. astute child who can sense something’s not right) comes with me to get bloods done bright and early on Thursday. We take a spin out to the CUH and then into Wilton for tea and scones and Penneys. Lovely. 

Text from GP later says bloods ok, no worse, some even improved. Inflammatory markers from the other day were very high though.

Off for MRI. Not quite as enjoyable as last time. Two failed attempts at iv line, arms now quite destroyed from needles. No music to listen to, too many instructions to follow. Take a deep breath, hold, hold, hold, now breathe normally. Nothing more likely to get you to breathe abnormally than being told to breathe normally.

“So, like, how soon will the doctor see the images. Just that, you see, I’m a GP myself like, and I’m supposed to be going away for the weekend tomorrow, and well if there was anything you could do that would be great.” Again hindsight reveals radiographer man wanted those images off his desk and on hers as fast as the little ISDN line could carry them. 

5:30pm, trying to get the dinner on, children watching telly or eating lego, whichever. GP’s number comes up on my phone. “You’ll need to sit down,” she says. Ah. I see.

Secondaries. Bowel or breast. CT scan and liver biopsy, maybe tomorrow, maybe Monday. You’re taking this very well. I’m not, I say.

Can I ask one question? You can. Are we really having this conversation? It’s not a dream or a fantasy I’m weirdly concocting? It is really what I am hearing? It is.

Ten minutes before Derek gets home. Pacing pacing pacing. Baby crying, can do nothing other than check that she’s safe. Heart racing but yet feels like it might have stopped. What are we going to do when I die?

See him at the front door. Close door to children. Wail silently into his jacket. No words. For a long time it seems. Then enough words. Cancer. Liver. From somewhere else. Spread. Then he wails silently into me. The coldest whitest his face has ever been. That look when his mother was dying. 

Deep breaths. Back in to make the dinner and rescue the baby. 

More phone calls - colleague, GP again, parents. Some slight readjusting of the facts for that one. “No trip to Paris unfortunately but we might hold you to the babysitting anyway if you don’t mind?”

The Mercy Seat

Small bit of benzo-induced sleep (2mg? Pah! I could take a hundred times that.)

Taxi called but getting angsty, hop into to the old reliable Fiesta. Late, phone ahead. Abandon non-locking car illegally next to a lifebuoy. Try not to take any symbolism out of that.

Run in, these people have been very accommodating, don’t want to be late.

Lovely smiling faces, oh yes she’s expecting you, take a seat.

Radiologists don’t do much in the way of face-to-face telling of bad news. More like face-to-ceiling, face-to-that-sign-on-the-wall-over-there. But sure can’t blame her, I don’t fancy it myself and I’ve probably got a bit more experience with it. 

Surgeon man much more used to this kind of thing. Straight into the eyes, smiling, good firm handshake, handsome but not too handsome, exceedingly trustworthy in his general gatch. Good. 

Scan experience significantly different from Private Towers. Hard seats, coughing be-cathetered compadres, loose over-laundered (I hope) gowns. Take a Break instead of Tatler. 

Scan room has a lovely tropical scene on the ceiling though. Nice touch. 

I have no idea if there was music this time or not. 

Definitely IV contrast which makes you think you are actually weeing. Not just bursting to go but actually experiencing that trickle down the leg aged 6 can’t hold it embarrassment. And a weird taste in the back of your throat, not tongue. How does that make anatomical sense? Radiographer mumbles something about iodine? maybe? but she never really thought about it before.

Out to holding room hinterland again, biopsy will be at 2 o’clock, admission to day ward, something something. Derek’s outside, can I go out to him, yes we’ll find you. 

He is in the glass-sided waiting room, they can see in, we can see out. Patient of mine sitting in there. Eyes averted. Derek and I look a bit official, he’s got his laptop out, maybe we’re here on Important Business, not because one of us is somewhere much further along the birth-death continuum than previously anticipated.

I should have changed my name on the computer. I need the anonymity of my married name. 

Thankfully my patient goes before I get loudly identified by the Italian junior doctor. “Follow me.” Molto bene, certainly I will. 

Admissions office - “oh sure we know all your patients here” - yes please you might change my name on your records, so kind, thank you, yes funny to be on the other side of the fence, ha ha, yes indeed, so kind, thank you thank you...

Up to the ward where I have an abiding memory of being so hungover I was drunk while I was at work. Who built Cork’s first microbrewery directly over the bridge from a hospital? Had they no shame? 

2pm. No biopsy needed. It’s coming from your bowel. Which let’s face it isn’t too bad really, is it? You know, if you had to pick one? Not The Worst, we’ll call it.

Off home in our little daze. Let’s go for a pint. The new place I haven’t been to yet. Then another new place. Inhaling experiences and sounds and sights. Isn’t this grand of a Friday afternoon, sure who needs Paris?

Bit tired now sure we’ll head home. Chit chat taxi man. Soundless childless house. Cold. Last 5 minutes of Home and Away. What were those two eejits called, oh yeah Lance and Martin, didn’t they win the lottery. Gas. What’s next, we’ll never stay awake. Grand Budapest Hotel. No way can the brain manage that. Gogglebox. Now you’re talking.

Ross’s for breakfast, a full Irish and a mini. Tea is a good drink. 

Better go get the children. Better go break my mother’s heart.

And So It Begins

December 2014

After that - phonecalls to siblings, emails to friends, texts, voicemails...

Both of us going to the launch of Ellen’s CD at the school - ‘they’ll know something’s up if we’re both there, won’t they?” Turns out loads of parents go to these things, both of them. Do people not have work to do?

Lunch in Hayfield but all I can have is green tea. 

Ellen sick again, pains in her tummy, leaving school early. 

Revolting 2 litres of stuff, gagging with each mouthful. If I can’t manage this, how will I cope with the rest of it?

Hospital again, a different ward; this one is where I saved a patient’s fat daughter from choking on her MacDonalds, by doing the Heimlich - she was twice the size of me, and not all that grateful. 

Middle-aged woman and a young one, waiting to get epidurals, they assumed I was the same. How I wish I had a bit of “intractable” back pain. But that’s not fair - our burdens are what they are. 

Lovely iv benzo, makes the Klean Prep worthwhile. Tea and toast afterwards, always good too. 

Surgeon, with a nurse, brings us to a different room. This should be scary except that we were expecting it, it almost seems normal. Sigmoid colon, 50% occlusion of lumen, biopsy taken, what else is there to say? Meet oncologist tomorrow at midday. Ok.

He’s one hour late. Maybe he always gets his timing wrong? Add time to what he says?

Dr Power. Derek. All good omens. Talk of New York, Sloan Kettering, worldwide expertise. We’ll do our best for you. No one mentions numbers/time/statistics.

Should have gone to this spa before I was cancer-ridden. Though I wouldn’t have appreciated it. Typical catch 22 of human nature.

Taxi to MUH, I’ll have to set up an account. Chirpiness, assumption I’m going to work. 

I don’t argue.

Lots of people in Admissions. Arrive on ward to be told I’m late. Rush rush rush, pee into that, wear that, needle in there oh no actually that won’t work let’s try again, oh well the anaesthetist will do it, rush rush rush. Anaesthetist oozing sympathy, let’s not call it pity. 

More iv goodies. Yummmmm.

Hadn’t really thought through the portocath. A hockey puck between my ribs and my skin. Not really that comfortable. And Frankenstein scars on my neck.

Sore, woozy, tired. Alone. Tea and toast but puked. Damn it. 

More sleep, more disorientation. Jab in the arse to settle the stomach. Try the toast again - success!

Miss my brother's text and phonecall. Feel bad about dragging him into this environment. And I need to lean on him to cross the road. Not what he’s used to.

Tired and sore at home. No time though. Up again 7am, back into the lair.

Even longer in Admissions this time. Must get here earlier in future. 

That word is becoming loaded. 

Rhymes with Nemo

Chemo ward as I expected it to look. Derek was expecting Breaking Bad. 

Plasticky wipe-down chairs. No privacy. Lots of “old” people - everyone hears everyone’s date of birth. 1964, 1956, 1945, 1928. 

I whisper 1976, Nurse Maura/Mary/Michelle shouts it.

All go again, pens and paper, poking and prodding, questions asked but answers not really heard. Do I do that?

Needle dug into the hockey puck - once again I fail to anticipate something. How else were they going to get under the skin?

Toxic waste merrily making it way into my vena cava. Well well. 

Beginning to feel a bit hot. They told me I’d feel cold so I had wrapped up in the donated blanket (“for your journey” - I never did like the transit part of travelling). Thermometer eventually produced. Oh dear, temp 38 point something, big red protocol button is pushed. Stop the toxic waste, call the 25-year-old doctor to nervously ask and poke and prod. We’ll have to admit you. Again with the not anticipating eventualities. Though I did have a bag packed....maybe the subconscious is doing a better job than the poor old full brain.

Blood cultures - more needles into my arms (so much for the portocath), chest xray, iv antibiotics, fluids.

Two-bedded ward. Girl next door has a familiar accent, I know her people. And boy is there plenty of her people. Gallstones. Ah what I wouldn't give...

There's something comforting about the environment, the familiarity of hospital beds and routines, the complete surrendering of personal responsibility, the meals in bed. The down time. Tipping the full brain onto the keyboard.

It was a good pause. 

It’s My Party

Persuaded them to let me home early, with my little bottle of toxic waste strapped onto me. Lots of talk about double-flushing, hazardous bodily fluids, staying away from sick people (including snotty children). So I’m an unloving pariah. Lovely. 

Next day is my birthday. Have to go back to the hospital to get the infusion taken off. It’s beginning to look a lot like Christmas around the place, I’m just noticing now. I am released, not to return until after Christmas. It feels like I have been set free. 

Lovely birthday with my beautiful family. It’s very hard to feel sick or sad or sorry with those gorgeous faces smiling up at me. I should rent them out to the other poor suckers in the cancer ward. 

The next two weeks were a gradual return to some kind of normality. Lots of friends and family, mulled wine, plum pudding, presents, shopping. Trying to minimise the number of earnest overlong hugs, but accepting that others aren’t as used to this new reality as I am. Delicious to see and touch old friends and loved ones; sometimes I’m the one extending the hug. 

Christmas Eve afternoon pints (well glass and a half). 

[The glass is either half-full or half-empty. Either way it’s not ideal]

Freezing walk on the beach to collect shells and stones for the new fish tank.

Toasted sandwiches in the Long Valley.

Tables pushed together, every chair in the house, tinkling glasses, children shrieking with delight. 

Only a few involuntary tears. 

Back To Reality, Back To Life

This time I’m a pro. I get the taxi good and early, beat the rush at Admissions. There is no rush. Seven or eight of us lined up, waiting eagerly to be saved. This time I don’t win the date of birth game. 1978 pips me. Testicular I’m guessing. Head shaved pre-emptively. Headphones/iPad type. Suits me. 

But there’s Mr Nervous First-timer with his sister who’s Been Through It Herself. Very keen to engage. Not with me buddy, sorry. Crap, he has the same surname as me. The surname I purposely chose to disguise myself. Shrink further behind the laptop and Tony Soprano, and pray that Mary/Maura/Michelle keeps her voice down a bit.

It all goes smoothly this time. Temperature normal, bloods normal, weight up a bit. I’m winning. 

I underestimate how long it will all take though, and make arrangements for lunch that I cannot keep. The old tendency to agonise about such things has mysteriously left me. Finally rendezvous with my troops and away home to do the laundry. 

I get more side-effects this time, tingling numb hands when they get cold. But I feel better. I feel good. Well. I am enjoying myself. I am tasting every morsel of food. I’d make a good restaurant critic now. I go shopping in Aldi and feel 100% normal for the first time in six weeks. Except for wearing gloves to take things out of the fridge. 

I see a GP there who I don’t really know. Does she look at me funny? Am I famous in my misfortune? 

I go to school to collect Ellen. The mums don’t know. Thanks be to Jesus. 

I go to work. Again the surprise on people’s faces that I am not emaciated and withered. 

I am giddy with excitement as my brain wakes up from its stupor. 

I have a list of Things to Do. Yes!