Rebel Rebel

Things I'm supposed to do when I'm on chemo:

1. Stay away from potential sources of infection, like crowded areas, snotty children, sick people.
2. Get lots of rest.
3. Take gentle exercise.
4. Keep a "fatigue diary".
5. Soak my fingers in diluted vinegar three times per day.
6. Rinse my mouth out with superconcentrated salty water after every meal.
7. Slather myself in a specific brand of oat-based moisturiser (still haven't taken the time to confirm my suspicion that this product is made by the same BigPharma company that makes the drug that causes the skin trouble in the first place).
8. Take multiple prophylactic medications in case I get any of a long list of icky side effects.
9. Use my own private bathroom to ensure my carcinogenic toxic waste is kept away from the healthy people in my house.

What I have been doing while on chemo:

1. Working. In a GP practice. In winter. No sick or snotty people there then.
2. Travelling on public transport to go to a Franks gig in central London. Infection risk on par with a trip to Sierra Leone.
3. Going to the Ice Kingdom in Hyde Park where it's -8 degrees. Without appropriate Arctic Survival suit.
4. Going to the school Christmas pageant(s). Again, hardly any snotty children there. 
5. Planning the Christmas dinner for 16 people.
6. Giving my new Fitbit plenty of stair-counts.
7. Completely failing to follow the sensible advice about caring for my skin and mouth before they crack/erupt/ulcerate. And then giving out when they do.
8. Stacking up my cupboard with multiple unused medications in a manner which would horrify any Poisons Centre employee.
9. Being lucky to get to use the bathroom without the presence of at last one child, two teddies and a toy train. 

If only I had the time to fill in the fatigue diary....I bet it would tell me I'm wrecked ;-)

Two Faced

For all my talk about fighting the stigma, and speaking out, and not being afraid to admit to being ill, I have been hiding myself behind a pseudonym. It's not a very clever one, since it's my married name. But I've persisted with it in the hospital because I feel it gives me a cloak of invisibility. 
No one will know it's me. 

But really, it's just a way of pretending that what is happening is actually happening to someone else. 

Mrs Sarah Chambers is a mummy, she washes clothes and makes lunches and stands at school gates. She signs the homework (though the squiggle is entirely unidentifiable as letters, not to mind an actual name). She organises the play dates. She pays the milkman. It's her name on the dry-cleaning docket.

Dr Sarah Fitzgibbon is busy, a teeny bit aloof at first, but then holds the hands of the widower or smiles broadly at the long-awaited pink line on someone else's pregnancy test. She likes things to be done right. She doesn't like to be asked too many questions at once, in case she misses a bit. 

She drank more than a lot of other girls in college, but was never messy. She smoked until it was no more use to her socially. She offered to be the pretend patient in the tutorials - why should it always be the men who take their shirts off? She was, without really being conscious of it, determined to behave any way she liked, and was not always aware when society had its frowny face on. 
She climbed Kilimanjaro (there was no way I wasn't going to get that in somewhere). 

Now she re-appears every other week, gets on her smart clothes and packs her stethoscope into her bag. She marches in and sits in her chair, goes through results, phones interns to give out about shoddy discharge letters, holds widowers' hands. 

If I bring her to the hospital, to get loaded up with skin-destroying, white cell-munching, head-fuzzing chemicals, she'll never be the same. 

So it's Mrs Chambers who goes in and sits in the recliner and drinks tea. And surrenders. 

She's a martyr, that one. I'd be lost without her. 

Doctor Doctor

I have spent much of the last two days in the company of other GPs.

We have discussed lots of things - swing dancing, grief, the Toy Show, fatal medical errors, washing-up, destitution, mince pies, desertion. 

At a gathering of retiring GPs, the tone was one of hope and despair in equal measure. The feeling was that while things have been pretty grim in GP-land for the past few years, they may be about to improve. But there was no-one there to hear this, other than the old codgers who are on their way out anyway. The young ones have already left, to go somewhere, anywhere, where they will feel good about themselves for being intelligent and empathic and hard-working and paid well. Instead of feeling like the worst kind of banker for expecting to be paid more than the average industrial wage. 

I am always intrigued by the phone-in show comments about the fat-cat doctors, and sure them doctors is loaded, I sees them going round in their fancy cars and living in their big houses. I am fascinated to know how much the average punter thinks we should be paid. 
Should it be the around the average, we'll say 30 grand a year? Should it be twice that? Three times that? What figure would be acceptable to Joe Public, given our level of training and responsibility? If their son or daughter decided to do medicine, what would they hope that they would earn?

Yesterday I listened to a social worker describe the conditions that she had seen when she called to a client's house one day. The house was bare. Minimal furniture, no food in the fridge or cupboards. She was not offered a cup of tea, because there was no tea, and possibly no cup either. 
The client was a doctor. 
She works for the Royal Medical Benevolent Fund Society of Ireland, which was set up over 170 years ago to help doctors and their families when they find themselves unable to support themselves.

How could a GP be poor? Sure the world always needs doctors, they're like bloody undertakers, there'll always be work for them feckers.

Yes, there's always work, but shockingly it turns out that occasionally (very occasionally mind, they wouldn't be making a habit of it) doctors can become unwell, sometimes even what you might call "sick". I know. It's astounding. I can hardly believe it myself. 

And even more rarely, but it has been known to happen, a sick doctor will actually not be able to work. 
(Thankfully this is very rarely the case, as most sick doctors do the right thing and inject themselves with iv antibiotics in the morning and go to work for the day before coming home and hooking themselves up to the drip again while making the dinner and replacing the missing tile from the roof.)

So a tiny minority of GPs, will find themselves in a position where they cannot work due to illness. 
That's okay though, because like everyone else in our egalitarian society, they can call on the government to help them out. 

Ah. 

Turns out that's not true. 
Like all self-employed people, GPs are not entitled to illness benefit from the Social. This is because self-employed people make loads of money and pay very little tax, and can write off all their diamond shoes as expenses. Ahem. 

One of the Benevolent Fund's beneficiaries has been waiting 18 months to get Supplementary Welfare Allowance, which is a basic weekly allowance of €186 for people who have little or no income. Or it would be, if you actually got it. Otherwise it's €0 for people who have little or no income. 

A self-employed person in Ireland needs to have income protection insurance. Which is pretty expensive, and given that doctors don't get sick, you'd forgive the young doctors starting off for deciding to use the money towards a mortgage or paying off their college loan or buying a plane ticket to Canada. 

The myth of doctors not getting sick is propagated by the seemingly ingrained-at-DNA-level insistence of doctors to refuse to admit to illness. 

I have spoken in the past about the stigma attached to cancer in the general public. The general public aren't a patch on the medical profession. Nobody tells anybody anything about their health. And if by chance it slips out, it's all bravado like the "I had a hip replaced there on Tuesday afternoon but I was back at work on Friday morning" stories. We're like some fella off Homeland stitching up his own bursted abdomen with a shoelace and then running off after the bad guys again.
So young doctors never hear of other doctors getting sick, so naturally they make the assumption that it'll never happen to them either. 

Of course all this cloak-and-dagger stuff only adds to the stigma, and every "sick doctor" is assumed to be a porn-addicted morphine junkie with homicidal tendencies, instead of maybe just having a bit of Crohn's disease.

And doctors die from suicide, and alcoholism, and stress-related illnesses in greater numbers than people in other professions. 

We know this. 

Us GPs are mad for prevention. We love checking people's blood pressures, and cholesterol, and Framingham scores. Smear tests - mad for them. Vaccinations - mad for them. Primary prevention is what gives us a little smug feeling at the end of a busy day. Stick that in your secondary-care books, we say to our hospital colleagues. 

But god forbid we would apply the principle to ourselves. We know we are high-risk. We spot the odd early-warning symptom in ourselves. We notice the signs that things might be getting worse. And we tootle along, la la la, work work work, sure that'll go awa - THUD. Hit the floor.

Anyway. 

My point.

Young doctors: Get income protection. NOW.
All doctors: Get a GP. NOW. And tell them what's wrong with you.

Back in a Tracksuit

First, a correction.

My maths was wrong.

Sarah+lots of cancer+treatment = Sarah+much less cancer

or

Sarah≈Sarah

I always knew that squiggledy-equal-to sign would come in handy.


Second, a realisation of luck, and gratitude.

Being physically weak makes you feel very vulnerable. I was scared of the rat and the potential home invaders and the leak in the ceiling and the children's coughs because I knew my body didn't have the power to fight off the attacker or wrestle with the insurance man or stay up all night doling out Calpol. It must be very frightening to feel like that all the time. I think I might call in to my elderly neighbour a bit more often. 

Don't Mind That

Ah yeah. 

That was just me having too much time on my hands, and getting a bit carried away with the old poetic licence. 

Not helped by the fact that the second class homework last week was all about "more than, equals to and less than". Which I think is pretty advanced stuff. Though I've heard long division these days is ferociously complicated, so I guess they've upped the maths game since Figure It Out. 

But I would like to thank all of you who were concerned about my wellbeing after I posted that last bit of misery. You are all very kind. 

Lisa Lynch wrote on her blog about how cancer had exposed different layers in her "friendship hierarchy". I don't agree entirely with what she is saying, but I do think it's worth pointing out that some people are just very good at being supportive and some people aren't quite sure what's the right thing to do.

So in an effort to make these ramblings somewhat useful rather than just a brainvomit on a page, I would suggest the following:

• If in doubt about what to say to someone who has cancer/lost an eye/had a miscarriage/got divorced, just say hello.
• If they don't answer, try again in a month or so.
• If they tell you to get lost, do.
• If they ask you about your life, don't feel that you can't tell them good news in case that will remind them how much their life sucks - they know their life sucks at the moment but it's nice to be reminded that there are still good things happening in the world.
• Offering to help in the future is fantastic. 
• Actually helping without waiting to be asked is sublime. 
• Knowing instinctively what will help is Yoda-esque.

(See? Useful.)

It Takes it Out of You

There have been studies (not a hope I’ll go to the bother of finding the references) that show that heart surgery significantly increases your risk of developing the kind of pervasive low mood that us doctor-types tend to label as depression. As in, your heart is actually broken. It’s a real thing. 

I’ve been thinking about what the equivalent might be when your bowel gets surgically re-adjusted, and I think I’ve figured it out. 

You lose your guts. Your courage. Your bravery. 

I wept like I’d had seven vodkas the other night when I thought there was a rat in our house. I am convincing myself, despite all evidence to the contrary, that I am going to end up with some horrific complication of the surgery and find myself back inside Multi-Occupancy Hell with Nora and her cronies. 

I’ve lost my mojo. 

I said when I came home from hospital that I felt unfamiliar with the world. Now I kind of feel unfamiliar with me. I don’t know this scaredy-cat. She’d want to get herself sorted soon because we can’t be doing with a snivelling sap in our midst. 

I have been comparing this Major Abdominal Surgery with my three previous experiences of something similar, when my babies were cut out of me. I’ve been trying to work out why this seems much harder, but of course the reason is simple. I didn’t get a delicious-smelling tiny fleshbomb out of this, that needs to be cuddled and fed and looked after and looked at. I did suggest to the theatre nurse that they should swaddle the tumour in a towel and present it to me after the operation, but strangely she wasn’t too keen on the idea.

So I am left with just me, but less than me. My new name is <Sarah. 

Home Again Home Again Jiggety Jig

There's no place like home (cliché time again)

Being at home is the best place to be (paraphrase)

The sun is in the sky oh why oh why would I want to be anywhere else (meteorologically inaccurate)


You get the general idea though. I am really glad to be back in my own place. 

Hospitals are fine for what they do but home is so much better. 

Oh. By the way. It turns out a general anaesthetic is a sure-fire cure for the common cold. Not sure if the health economics of that would stand up, but it's a medical fact. Don't mind your echinacea and vitamin C, get yourself some major abdominal surgery the next time you have a sniffle. It'll do wonders. 

Semi-Private

I foolishly pointed out at 10:30pm last night that my insurance only covers me for semi-private accommodation, i.e. not for a fully private room. Loads of insurance providers have made it almost impossible to get cover for a fully private room in a public hospital, but if it so happens that the only room available is a private one then the hospital and the insurer call it quits and you don’t have to pay the difference. You can also get around it by having a medical reason for being all on your own, like if you might be a danger to others by being radioactive or infectious. (Pity that doesn’t extend to being a danger to others by being a racist snoring know-it-all pain in the ass, that would have nicely emptied my multi-occupancy room for me.) 

So when I told the night manager lady that I wasn’t covered, she could have winked and nodded and said ah sure we’ll sort that out for you, don’t worry your little head. Instead, however, she decided it would be best to scoop me out of my nice little cocoon and march me down the corridor to the manky ancient parquet-floored four-bedded hellhole that contained three eager little heads poking out of the tops of their blankets, delirious to be welcoming another poor sucker to their fold. 

Correction. I say three heads, when in fact I could only see two, with the third hidden behind a purple paper curtain, but as she kindly shouted from within, “I’m not being rude, I’m just using the commode!”

I think I’ll pay the €172 a night extra from now on. 

Done Deal

He's out now anyway, the little fella. 

I got to see him in glorious technicolour on Wednesday, when I had a sigmoidoscopy without sedation, meaning I had the surreal experience of having a camera wind its way up my bottom and getting to watch its journey through my bowel on the telly. 

Still better than Jeremy Kyle I guess. 

So I could see the little culprit once the surgeon had found it - it was so small he went past it the first time. The size of a small grape I’d say, and not a bit nasty-looking, just smooth and pink and looking a bit lost. He injected a load of india ink into it which turned it into a much more appropriately sinister-looking thing, and then we were done. I made my joke about fulfilling my mid-life crisis need for a tattoo, and he said well it will be gone tomorrow so there won’t be time to regret getting a dolphin instead of some wise Ogham runes or whatever. 

I had also had the pleasure that day of meeting the stoma nurse, who was as whisperingly tactful as any hospice nun, even closing her eyes intermittently and muttering to herself about placement and positioning and contours. She is a woman immersed in her job and not inclined to be too flippant about it, which is really just as well. She drew four purple circles in an x around my belly button, and covered them over meticulously with gauze and tape. I decided not to look at them for the rest of the day. 

I met two anaesthetists, one who came for a social visit which was very welcome in a day full of business, and both helped to reassure me that my bunged-up headcold head probably wouldn’t postpone the surgery. Though quite a big part of me was kind of hoping that it would. My temperature was okay, mostly due to the fact that, in general, people are terrible at taking other people’s temperatures. (The yokey goes into the ear canal, peeps. I would suggest that they get patients to do it themselves.) My white cell count came back normal so that would keep them all happy. 

I trotted home to do the laundry, pack my bag, make the dinner, read the stories and go to bed. 

Woke up with sinuses jam-packed full of, well, greenish jam. Had a sneaky Lemsip (dear god I’ll be in trouble when the doctors find out). Narky and snippy with the children I adore and would miss like hell for the next few days. Remembering, then forgetting, about the car insurance and ballet fees and bus money. 

Back to the same ward, different nurses. Same questions answered over and over. Peed into another bottle. More enemas. (I think I’ll leave the enema stories out of this. The jokes are too easy. Shooting fish in a barrel.) I had snuck in my own thermometer. Their readings were out by about 0.8 degrees all morning. Grand by me. If mine went over 38 degrees I’d say something, otherwise we’d just get this show on the road. 

Lovely anaesthetist who wasn’t too perturbed by my bunged-up head, or my morphine sensitivity. “We’ll give you lots of anti-itch medication, you’ll be fine.”

Into the theatre, the usual controlled and amiable hubbub, ladies counting things in the corner, men slapping my hand to get the veins up. “Just a little something in the vein now to put you to slee….”

AND out. 

Itchy itchy itchy nose. Can’t scratch it because of the oxygen mask. Hands feel like two balloons. With gloves on. Words coming out funny. Hands on tummy. Don’t feel anything that might feel like a colostomy bag would feel. I think. 

Lady next to me in a bed. Then a man. He’s snoring. Or is it me?

Itchy itchy itchy everywhere. Tubes in lots of places.

Words and brain clearing a bit. What time is it? 8:30 pm. It’s busier now than it was at lunchtime. Coming and going, coming and going. 

Bed moving, porter at one end, nurse at the other. Banter. Banging off lift door. 

“Here you are now!”

The lovely familiar face of the man who has been waiting four hours to know if he’s ever getting his wife back. 

Blood pressure, heart rate, temperature (these ladies were good at it). All go all night. You won’t die of sepsis but you might die from lack of sleep. 

Surgeon was in at 10:30pm and shows up again bright as a button at 7am. Now I get it, sleep is for wimps. I need to be blowing harder into my lung exerciser thingy, I need to get out of bed and walk down the corridor, eat this but not too much of it, keep the tubes in until your body can be trusted to work all by itself. 

Dietician comes to tell me to break every rule in her own book and it’s killing her, I can tell. I am to eat no fibre whatsoever for 3 weeks. White bread, white rice, white boiled vegetables. I am nauseated just by the thought of it. It’ll be like living in a really bad nursing home. Including the revolting nutritional drinks that make me want to cry. 

My children will be disgusted - how come I get to eat cornflakes and white bread and no vegetables?? Not fair mummy. 

Slowly but surely the tubes and lines and drips and drains have been removed and I am almost back to myself. My hair is washed and my body has remarkably few new holes in it. I’m tired though. Nodding off. Might be the drugs or just the effort. Snooze before rugby I think. Zzzzzzz.

The Knives are Out

They’re going to take out my primary. 

Not my primary school, or my primary reason for living, or my primary degree. 

My little Initiator, the source of all ills. The bowel cancer bit. 

It’s been sitting there happily for ten months (plus however long it was there before I knew about it.) It’s been doing its thing, which, as far as I can see, is not much. It doesn’t do anything very impressive in terms of symptoms, or bleeding, or expanding. It’s just there. In fact it’s a bit smaller than it was before, because it didn’t like the old chemo and shrivelled away a bit from it. It only glowed a little bit on my PET scan. It’s trying to fight a good fight, but it’s a bit puny. And now the boyos are going to scoop it out with their little camera-assisted cauterising pronger thingies. Heh heh. Seeya buddy.

Surgeon A is going to do that part. Surgeon B is going to pop in while I’m panned out and slice a corner off my liver, just the part that’s handy like. 

The thing about keyhole surgery is that I’ve never been able to figure out how they get the big thing out of the small hole. (You can tell I’ve only ever delivered by C-section.) And I’ve seen it done - gallbladders full of stones being squezzed through a 1cm opening. But I still find it hard to believe that our bodies are so stretchy. 

Anyway. 

Once they cut out these bits and pieces, they are going to zap me again with chemo, to try and blast the last few stubborn bits in my liver. Another PET-glower is sitting next to some hepatic artery or other. The rest of the “deposits” (if only it were a bank) are shadows of their former selves, quiet, cold, calcified, but still potentially scheming away in the background to regroup and fire up again. So we have to powerhose their ambitions with fluorouracil and oxaliplatin and god knows what else. 

Where I’m at now is about a billion times better than where I was a year ago. Not a single person really believed that I would have this much less cancer now than I did back then. They all - we all - thought sure we’ll have an ol’ go at fixing this but let’s face it chaps, it is a fair mountain to climb. 

Ha.

Clichés

Having “I Will Survive” in my cancer playlist was inevitable. I avoided that song Survivor, by the girl with the large bottom (or is it when she’s with the other two girls with large bottoms, anyway you know which one I mean. She wears camouflage.)

But you cannot go through this whole cancer rigmarole without tripping over saccharine over-obvious inevitabilities, like someone buying you a cosy hat, and finding yourself saying things like “life really is too short.”

There’s nothing wrong with the cliches. Sure where would we be without them. 

I am back at work two days per week. The first few patients I saw back in July must have thought I was on speed. I was glowing with enthusiasm, hurling open the waiting room door and shouting out the next patient’s name, beaming at them when they sat down in my room, bellowing “how are things with you then?” gleefully. Thankfully, most of them I had never met before, so they did not know I had been AWOL and just thought I was a ferociously naive new girl. Helped by the acne making me look about twelve. 

It felt bone-tinglingly great to be back at my desk, doing my thing. I kept forgetting the names of things and people, but felt no shame in admitting it. 

I felt alive. (c.f. first paragraph...)

After a few weeks I started getting cross with people. Thinking, “get over yourself, there’s divil-all wrong with you."
Another cliché.

I was blown off course a bit by a fella coming in to me, who I don’t like much, for reasons I won't go into. He had been in hospital the week before and came to me with his discharge letter and prescription. I had a not-very-well-hidden shneer on me.  “Terrible news”, he says. “Oh yeah”, says I, thinking he’ll have had a bit of pneumonia or a dose of gastro. I open the letter. 

Diagnosis: Colorectal carcinoma with multiple liver metastases and suspicious pulmonary nodules. 

Ah.

I take a little gulp. He says again, “Terrible news.”

Hmm, I say. You never know. 

He has cancelled his appointment for the oncologist. He doesn’t want to go through what his wife went through. 

I say to him maybe it won’t be that bad. “I’ve heard the type of chemo they use for this isn’t the worst.”

“Really?”

“I heard you mightn’t be sick at all.”

“Oh.”

If it was anyone else, I may well have let the professional facade slide and told him my tale, and we could have formed a little support group right there and then. But I didn’t, and he left, possibly a bit more inclined to go for the treatment, but still believing his life was guaranteed to suck from here on out. 

I cannot decide if I should tell my patients about my diagnosis or not. The people I have nearly told so far are: a nun; a gentle single lady in her 70s; a young mum with a life-threatening brain condition, and a 99 year old with dementia.

Go do your work there, amateur (and professional) psychologists. 

I wonder what would happen if I did tell. I guess l it would slow up my consultation rate quite significantly - it’s not really the kind of thing you can just slip into conversation and then move casually back to examining bunions. And once it’s out there you can’t take it back. I would have the inevitable outpouring of sympathy and platitudes, and the usual foot-shuffling and looking away. My practice has a large elderly population, “salt-of-the-earth” types, with traditional working class values and expectations. These are people who say “the big C” under their breath, and bless themselves. They don’t want a brash cancer-whupping atheist messing with their world view. 

And how many of them will think feck this I’m out of here, in case it’s contagious! Look at her with her big open sores on her face! Get her a bell!!

But if I don’t tell them, they’ll invent their own truth. 

“I heard she had post-natal depression, couldn’t handle the third baby. It’s another redhead, you know.”

“I heard she hurt her back in an accident and is taking a case, she’s going to get millions.”

“No sure, she ran off from the husband and shacked up with one of them foreign fellas that works in the hospital, I sees her down there waiting around for him to finish his shift.”

“Go way out of that girl, I know for a fact it’s the drink....”

You can’t escape the clichés.

Soundtrack

I feel bad for dissing the chemo ward in my last post. It was a case of familiarity breeding contempt. I'll be all enthusiastic when I go back, I promise.

The last time I was there, I was getting particularly annoyed with something or other, when "Helter Skelter" by The Beatles came on in my earphones. 

I thought, how fantastic would it be to plug this in to a few gazillion watt amps and blast it through the place. That would get Sheila's constipation sorted I tells ya. 

So I though a bit more about a possible Chemo Ward playlist. Here's what I have so far:

• Irene Cara - Fame
• Gloria Gaynor - I Will Survive
• The Jam - Going Underground
• Journey - Don't Stop Believing
• Leonard Cohen - Ain't No Cure
• Joe Jackson - Cancer
• Damien Dempsey - Sing All Your Cares Away
• The Ramones - I Wanna Be Sedated
• The Specials - Enjoy Yourself 
• The Velvet Underground - Beginning to See The Light
• Dylan/Clapton/Rose - Knockin on Heaven's Door (Axl wins for me)
• Tom Waits - Looks Like I'm Up Shit Creek Again
• The Frank and Walters - Fight
• The Beatles - Getting Better
• The Pogues - Fiesta (If he's still alive and happy there's hope for us all)

Any other suggestions?

**Updated 24/9**

• Just for you, Gary
• And in an uncanny link, this one's for Niamh (I love one of the comments underneath - This is like attending a production of Annie and the jerk right behind you is talking out loud.)

Good Behaviour

It dawned on me that my recent posts here haven't been particularly informative. 

Useful and all as it is to know that my laptop was broken and is now fixed, or that my children are adorable, it doesn't really give much away about how my treatment is going, or how I'm feeling, or what's happening next. There are no clever tips about how to manage those pesky side effects, or what clothes to wear when you go for chemo, or what to buy a cancerhead for Christmas. These are the things people want to know, right? 

Not to mention all the wonderful insider information I was going to be able to reveal as a doctor who has "crossed over". 

So.

I am currently receiving immunotherapy, ye olde Vectibix, every two weeks. Though I'm not actually, now, because I petitioned for a reprieve for a few weeks to allow my poor skin a chance to re-porcelainise in time for my brother's wedding. 

No pressure there skin, in your own time, but dear god let me be free from spots and itching and cracked fingertips just for a week or two, please.

I am having a PET scan this week which will load me up with more radiation (did I imagine it, or did someone once mention that too much radioactivity might be bad for a person? Hmmm). 

I haven't the faintest idea what a PET scan entails. So much for the insider doctor knowledge then. 

Afterwards all the chin-rubbers will fight about who gets to do what to me next. I'll probably just nod and agree. I'm kind of hoping that Surgeon beats Radiotherapist beats Oncologist in this particular rock-paper-scissors scenario. But sure we'll see. 

Getting a break from treatment has the other significant advantage of not having to set foot in that bloody chemo ward for a while. 

Funny how a place can change from being a warm welcoming haven (slight exaggeration there) to a miserable drab hellhole in the space of a few months. Most people have a defined period of chemotherapy, usually around six months or so, so they nearly always know when it's likely to end. No such luxury for me. Nine months and counting (that's a good thing!! Not complaining there at all Karma/God/whatever else I need to hedge my bets with!!) of sitting in the same plasticky seats, of which about half have a functioning recliner function but of which 100% are made from the same faux-leather as the back seat of a 1980s Renault. So here's a tip on what to wear to chemo - nothing that allows any part of your skin to come into contact with the furniture, or else you may be stuck there like a Mickey Mouse sunshade to a child's car window. 

There are eight of these beauties in the room, four facing four. I usually opt for the one nearest the door or nearest the nurses' desk. I eavesdrop unashamedly on the nurses' handovers, so I know that Michael's oxali has been ordered but they're waiting on his bloods, and that Sheila's constipation needs to be reviewed by the SHO. In fact, I wouldn't really call it eavesdropping, since that implies some kind of strain or effort to hear what they are saying, whereas you would need industrial earmuffs to block out their "discreet" tones. But it is reassuring to me, listening to the medical lingo, thinking my own thoughts about how I would tell Sheila to eat fewer Count On Us meals and take the odd walk, rather than loading her up with Movicol and Senokot. 

It is not so reassuring, though, to be able to hear every minute detail of each patient's responses to the same dozen questions they roll out at every visit. "Any problems with the waterworks?" "How are the bowels?" "You don't have any pain, do you?" There is a question about appetite, but nothing about sleep. There is a question about chest pain, but nothing about fear. There is a question about energy levels, but nothing about hopelessness. 
I don't know if they purposely designed the review sheet to exclude any possibility of finding out how a person actually feels, but it certainly works out that way. Just as well, because the communal wailing would probably put the nurses off their cupcakes. 

Of course, some clients are only too happy to tell their tale, over and over. And if the nurse won't listen, surely some other poor sod in the same boat will. So there are the Strainers, the Rubberneckers, the ones with their heads twisting around on their shoulders trying to catch the eye of the unfortunate fellow patient who hasn't had the sense to earphone their way into anonymity. Occasionally you get the serendipitous delight of having two such sharers in the one room, and they strike up a loud conversation comparing their experiences and the rest of us are left in peace. 

Jeremy Kyle with the sound down is really only marginally better than with the sound up. That man must do some serious meditating when he gets home. I hope. 

The tea is good, and Martina who brings it, and the chocolate chip cookie. 
The nurses are nice. ("Angels" is the official Cork term.) 
The concept is beyond reproach ("line them up, pour drugs into them, keep them alive.")

I'm just really glad to be staying out of there for a while. 

Hierarchy

Stages. Grades. TNMs.

Doctors love categorising stuff, and nothing more so than cancer.
Their first mission, on finding a little mass of cells dividing like billyo, is to find out just how enthusiastic it is. So they slice up a little piece of the flesh into microscopic slivers and peer at the nuclei and make a pronouncement about how differentiated, or not, the whole sorry mess is. And then they scurry around the body with probes and CTs and PET scans trying to find another part of you which has gone off script, and they nod sagely and rub their chins and pump dye into your lymph nodes and whip them out and slice them up and peer at them, and then a load of them sit around together, rubbing their chins and nodding sagely, and decide how f*%^ed you REALLY are.
And then they tell you what it all means, and what they're going to do about it.

And you find out your place in the hierarchy of cancerheads.

Minimally invasive types just have surgery and go home. Very dull.

Something a bit more adventurous-looking, but still in the one spot, might need a touch of chemo or radiotherapy afterwards, just to be sure to be sure, and that elevates you to the next level. You get chemo side effects (your hair might even fall out) and you have a really good excuse to skip work. But you will probably never be bothered by that particular brand of cancer again in your lifetime.

Stage 3 is where it really hots up, where every new ache or twinge or pimple could herald the long-anticipated Recurrence. Everyone (including the doctors) suspects it will happen, and you're really pretty lucky if it doesn't.

Stage 4 is when the horse has already bolted. There's almost an air of resigned contentment in the oncologist's room. He can justifiably "throw everything at it". Or not. You're toast sooner rather than later anyway.

As Johnny Sack says, "There is no Stage 5."

[There was a bit of a misconception around my place that "secondary cancer" meant Stage 2. I felt bad disillusioning that one.]

So cancerheads are always pretty keen to tell you where they are at on the scale. Loads and loads and loads of them (the ones that go on about it like) have Stage 2 breast cancer, and have to go through surgery +/- radiation +/- chemotherapy. That is about as much of the cancer "experience" as anyone could ever possibly want. You can call yourself a Survivor, write a book, get a slot on Oprah, win a TV talent show. Sorted.

But this has sparked a new phenomenon. The Cancer Lifer. A person who has metastatic cancer, stage 4, secondary spread. This bird did herself a nice viral video and coined the phrase. She is also coining it in, to the tune of $15k and counting.

So there's a one-up-manship thing going on. There's a sense that to be truly worthy of admiration/pity/sympathy/cold hard cash, you have to be really truly rightly up the cancer creek.


Human nature is bloody hilarious. Even cancer has its cliques.

Lapstop

Besides not having any time to write, my witterings have been somewhat curtailed by the fact that I smashed my laptop screen a few months ago (in a temper, but I cleverly disguised it as an unfortunate accident).
But didn't my trusty companion go off and get it fixed for me this week.

So I'll be all over the internetting again now.

You have been warned.

Time

It's pretty much impossible now to get the time to write. As I sit here I have two little beings bobbing around at my elbow. One munching loudly, the other (literate) one giving out about what I am writing. 
"Hey!" she says, "who are you sending that to?" 
"I'm not sending it to anyone, it's called a blog, like an online diary." 
But a public one, that anyone in the world can read. So I am sending it, to people I don't even know. 
Hello you guys that I don't know, hope you are all well. 
Though if you are interested in a stranger with cancer, I'm guessing you might not be all that well. 

I'm beginning to think that all people with serious illness should have small children. All those charities out there offering support for cancer sufferers, and not one of them provides the service of lending you a few toddlers for a few months. There's definitely a gap in the market. Because it is fundamentally impossible to be unwell when you have needy loud hilarious indefatigable terrorists rampaging around you all day, and hugging you with all their hearts at night. 
There is no time for pitying yourself when there is barely time for peeing by yourself. 
I haven't really mentioned my youngest bundle of deliciousness here, because the tears would short-circuit the keyboard, but suffice to say she makes cancer easy to ignore. 

So in return for giving all under-sixes free GP care, I think they should all be farmed out to sickly types for a few weeks every year. Toddler Therapy. I'm onto something here, I can tell. 

Damn Statistics

There have been some complaints (one complaint) about my glib reference to statistics in my last post.

Here is an interesting thing I read about the use of statistics in conversations about prognosis.

I like this bit - “Could it be that, instead of the cancer, it was his expectation of death that killed him?”

Books

I haven’t read too many books about cancer since this started, but I did read “The C-Word” by Lisa Lynch recently, and I surprised myself by really liking it. I had seen the TV adaptation (I recorded it and watched it on my own in the middle of the day, convinced it would be mawkishly terrible) and I sheepishly bought the book afterwards, still half-believing that it would be rubbish. But it’s not. It’s funny and insightful. While Lisa wouldn’t be altogether my kind of lady, she’s far closer to it that the other cancer types I’ve come across. She’s dead now though.

The other book I read was “The Guts” by Roddy Doyle, and it goes without saying that it is very funny. I probably read it a bit too soon after I was diagnosed though; I think I’ll go back to it again now with the benefit of hindsight and somewhat less shock-induced-brainfreeze.

This GP fella in Dublin has written about the animal-protein business - basically, some other guy wrote a book called The China Study, about how most Western illnesses are caused by eating too much meat and animal-derived protein, and we would all live longer and happier if we were vegan, and the GP guy thought that makes sense and told his cancer patients, and some of them lived and some died. I was on board early enough in the proceedings - when you really think about it, it kind of makes sense not to eat so much meat - but they both lost me about half-way through because even though the research indicates that small amounts of animal-protein are probably not harmful, they both decided well if a small amount probably isn’t harmful, then none at all is obviously even better. And I just cannot give up the aul’ cheese. Or icecream. Or chocolate. And so now if my cancer progresses (and statistically that’s a cert) then these boyos can blame my Leonidas- and Brie-munching and still be convinced that they are right in their assertions. And it adds a nice layer of guilt to the process for me - if only I hadn’t had that last gelatooooooooohhhh....

Guest Post from my Trusty Companion

Concentrate

I’ve been thinking about my childhood a lot these past few months. Sometimes my thoughts and memories are really vivid – like that time I fell on the road outside our house and cut both my knees and hands. I dragged myself up and began to cry only to be told, nicely, by a neighbouring Dad, Mr. Quigley, that it would ‘toughen me up’. I believed him immediately and decided to stop crying (must have been 5 or 6 yrs-old I guess). Other times I think more abstractly about the sheer volume of living we all do. I think about the millions of moments that make up our lives. I remember that really nice feeling of catching yourself being content. I think about the role my parents played in my childhood. But mostly, I think about the role I’m now playing in my children’s lives. “We’re very lucky”, my lovely wife and I agreed recently. Don’t worry, we both got the irony of us expressing that, but right now we have three really special reasons to be grateful. That gratitude and the love we share, combined with the reality of dealing with the aggressive treatment of Sarah’s cancer, has given our lives a very intense quality. The future is uncertain and the present feels concentrated. Every day feels a little loaded. But we both know that there will be less intense times ahead for us all and that, whatever happens, everything will be alright.

Recap

It’s been six months. 

Having spent most of that time determined not to think about time-spans or end-dates or red-letter days, I can’t help but be aware that half of a year has passed since cancer entered our lives.

In the same way that it is pretty pointless to wistfully reminisce about life before children when you could “do whatever you want”, upsetting yourself by being jealous of a sleep-in you once had in 2005, it is also not really much use to think about how the past six months might have been if I didn’t have cancer. I mean, there would have been much fewer flowers and much less cake, and instead there would have been more worrying about work and patients and money and teething and grommets and tenants. But there has been all of those things, and there would still have been some flowers and cake. 

So the differences are attitudinal. And physical. 

For pure pig-iron, as my father-in-law would think but never say (never say what you mean being a standard Irish-man-of-a-certain-age approach to life), maybe I’ll document the physical changes that have happened in those six months. Look away now if you’re not into that kind of thing.

Starting from the top.

Hair - wirier, whiter, shorter, falling-outer after radiotherapy but not too bad the rest of the time. Lots of it on the floor and carpet now. A real pain to clean up.

Face - as previously mentioned, pretty fecking fecked at the moment. Red, dry, spotty, greasy, hairy, blotchy, pustulent. Get this - overgrowing eyelashes, like an old Indian man’s sacred toenails. Forward-encroaching hairline at the temples. So hair falling out of my head but proliferating on my visage. Good symmetry.

Neck - spotty and scratchy, with my first scar, a little grey wrinkly dent, from where the line of my portocath was poked into my vena cava. Further down, another pokey-to-get-in-there scar and then the proper slice-across one, maybe 3cm long with its little hard hockey puck pushing up from underneath. I forget about it all the time now, but I am reminded of when I was terrified that it would be uncomfortable forever. I neglected to tell my beauty therapist at the spa last week that I was a leper - I mean have cancer - they do get very haughty about that kind of thing in there, oh we couldn’t possibly put some old over-priced Nivea on you with your chemotherapied skin in case you sue us - like that’s my biggest worry. So I failed to tick the Cancer box on the over-elaborate check-in form and just told her I had acne. She would have got a bit of a fright if her lovely manicured Polish fingers came across a small tin of Vaseline under my skin just above my third rib, but thankfully her fancy facial massage techniques didn’t extend that far. (Note to spas - include a Chemo package and milk the cancer market for all it’s worth. Small kickback to me for the tip please.)

Anyway, we digress from the categorical run-down of my physical flaws.

Dry-as-a-bone belly skin over a proper beer-gut. Central obesity is what steroids give you. Oh and a moon-face. Words I learned as part of a long list of potential side effects that meant absolutely nothing to me at the time. It was one of those lists with a really annoying mnemonic that I can never remember - maybe “boiling fat” or “beating heart” or something? I always hated mnemonics - I couldn’t bear someone else telling me how to remember things. But now I am frantically trying to remember the things on the list that I would have dismissed as not life-threatening and therefore not very interesting. I mean I know you can get diabetes and high blood pressure and stuff but suddenly skin striae and fat cheeks matter more. 

Three scars on my right upper thigh from three angiograms. None of them particularly well healed (granted one is only a week old). Bruising, remnants of sticky dressing stuff that refuses to come off. Spots. Follicular issues I won’t get into. Suffice to say what happens on your face and mouth tends to be mirrored in your other end. Freudian, I think. 

I passed over the puckered incision that released my three bundles of over-eager flesh, bursting to get out of the half-womb I provided for them. 

I have varicose veins in both legs. I was going to have them wiped away by some fancy new sclerotherapy or something, when I was done having my babies. Will I still? 

Chiropodists tend to be either wimps or vicious. The last lady was the latter. My healing powers aren’t what they used to be but I couldn’t bring myself to tell her to hold back. If you’re going for it, you’re going for it.

So somewhat battered and torn, but mostly just me.  

I’m Getting Good at This

Second round of SIRT over and done with now, and I’m home an’ all. Well done me. 

Scan from last week already showing good response to the magic microspheres and hopefully more improvements to come after this round. 

All went much smoother this time around, you can’t beat a bit of learning from prior experience. I had the sense to stay away from the morphine this time so no itchy nose or pukey guts. There was a bit of bewilderment amongst the staff as to why I had a fully loaded syringe of opiates next to me but I wasn’t shooting it up - if there were any Nurse Jackies around they must have been freaking out. And I bargained my steroid dose down so hopefully I won’t go quite as manic, or fat. 

I got out a day earlier than last time, but it’s important that I take it VERY EASY, no housework or any of that carry on (I see from the commentary on my last post that sometimes my trusty companion does read this blog, so I may as well use all fora available to me to reiterate that VERY IMPORTANT medical instruction). And again with the staying away from small babies and pregnant women and all that, though I feel a bit less radioactive this time (if it possible to feel such a thing, one way or the other). I did get the Geiger counter man to turn up his volume this time, and it did indeed make the classic tick tick tick. No nerd could have been happier. 

I fell fast asleep in the exceedingly boring nuclear medicine machine so that was grand. 

I got my tea and toast in superfast time after hinting loudly about it. 

I got back to the ward in time for “supper” (at 4:30pm). 

My in-room fridge was already stocked with salad and fruit (by my trusty companion. He’s great).

I got to finish the not-very-good book I’ve been trying to finish for weeks, even though I had promised myself to just give up on bad books and not struggle to the end. 

So yeah, I’m a pro at this business now. 

Shame in a way that it's the last one. 

Back to the skin-savaging Vectibix next week, but then we are off on our travels again. Prosecco and pizza for ten days, well known cures for carcinomatous livers. Salute!

Brace Yourselves

I haven’t written anything in a while and now I have loads to say. 

The chances of it coming out concisely and coherently are slim to none. So bear with me.

Those steroids made me go a bit doolally (see previous post). Good doolally for a while, but then it wore a bit thin. The ferocious appetite they induced means that I am no longer a bit thin. I have a paunch and a fat face. A fat spotty face, because the Vectibix has decided to wreak its acne havoc all over me. 

It is a strange thing to suddenly be conscious of my appearance. It is a strange thing that I never was before. After all I am a woman, relatively young, living in western society. How dare I not care how I look? Do I not read the magazines? (Eh no.) Do I not watch the TV? (Eh yes.) Do I not know that my appearance is what validates me as a member of this society? (Must have missed that bit.) 

How did I get this far in life and not succumb to the overwhelming pressure to look good all the time? 

I think now I know. Because I always probably looked okay. Not great, but not noticeably dysmorphic. And now I have an affliction. A pizza face. The kind of face I have seen on others many times and never really understood what it meant for them. Now I am looking in the mirror more than twice a week. I am running back into the house because I have forgotten to put on makeup. I am holding my hand over my chin while I am talking to people. I have had a small child shout at me, “Why are you covered in spots?” and I have felt embarrassed instead of amused. The percentage of time that I forget how I look has dwindled. 

Is this how other people feel? Is this how other women feel? I have read about and spoken to women who wouldn’t dream of leaving the house without makeup, and I’ve been politely bemused and a bit sad. Now I’m even sadder, because I am realising what it really means. It means they can’t bear to look at their naked face because it makes them recoil in disgust. That is a fecking holy shame. And here I am joining in with their self-loathing. When really all I have is a few old spots. 

Another layer of my robustness has been peeled away.

On a more positive note.....

We had a lovely wholesome family weekend two weeks ago, celebrating a birthday and a communion. (Our family is renowned for its wholesomeness.) 

It made me think a bit about relationships between mothers and daughters. That old chestnut. 

My daughter and I squabble all the time. I get frustrated with her and scold her for not doing what I expect her to do, even if I haven’t fully explained what it is I want from her. I don’t treat my son in the same way. I am much more indulgent with him, I forgive him quicker, I leave him off. It’s only taken me four years to realise this, and to begin to try to understand why. 

I hold my daughter to a higher standard because she is female and I expect greater things from her. Isn’t that a terrible thing to say? Female chauvinism at its best. The little man can do what he likes because sure that’s boys for you, bless their little hearts. There is an inherent supposition that boys are going to misbehave and can’t be expected to follow instructions. But girls are supposed to help their mums and do what they’re told and keep those pesky boys in line. 

No wonder they freak out when they get a few spots on their face. 

“PERFECTION!!! I NEED PERFECTION!!! NOW!!!!!!!”

But I have, up to this, felt good about myself, and have not been too harsh a self-critic.

And that’s thanks to my own mum who, while probably treating her boys and girls a bit differently if we were to really analyse it, basically brought us all up with a tremendous self-belief. I joke that our family motto is “Impossible is Nothing.” It’s hard to be timid and retiring and unadventurous when your parents have sailed around the world - it’s just too embarrassing to be outdone by them. 

My mum thrives on helping other people, possibly to a fault. It’s the classic Irish Mammy affliction, of neglecting oneself, serving everyone else your own dinner and standing in the kitchen eating stale bread saying, “No no I’m fine, I had mine earlier.” But you can’t give out to someone for that, it’s a bit like saying, “That Mother Teresa one was a fecking goody-goody show-off.” Not on. And what about a mother of Irish extraction NOT being a Proper Irish Mammy? There’s something seriously wrong with you then. (Sniff. Guess I’ll have to start giving other people my dinner then. Damn.)

So these are the things I would like to thank my mother for:

My (hopefully only temporarily wavering) self-belief

An excellent diet

A childhood home devoid of any negative body-image commentary

My thick hair (v useful in the current situation)

Lots of babysitting

Resilience

Watering my plants. Every time she visits. 

Hanging out my washing. Every time she visits.

Giving me her dinner while she ate stale bread

Halting her adventures while I go through mine

Endless love

Final thought of the day.

Single middle-aged men with cancer are the most irritating, demanding patients that one could have the misfortune to sit next to on a chemo ward. 

Transmission ends.