Screen Time

I have been working in cancer screening for seven months now, and I have had the opportunity to reflect on what that means for me, as a cancer patient myself. 

I thought I took on this job because I am interested in women’s health, and I was looking for a new challenge, and I admired the team I was joining. I didn’t consciously think about my own personal experience of cancer, but realistically it probably did motivate me. I have been involved in patient advocacy in a few small ways since my own diagnosis, and had applied for a couple of positions that were related to that, but I did not think this was particularly relevant for my job with CervicalCheck. For a start, my cancer is colorectal not cervical, and besides it is unrelated to screening as I was diagnosed at an age that is outside of the screening parameters. I just had “unlucky” cancer, not “preventable” cancer. But of course all cancer is unlucky, and not fully preventable. 

In Ireland, we have structured screening programmes for three types of cancer; breast, bowel and cervix. Why these three? Why not any or all of the other types of cancer? Shouldn’t we be doing our best to prevent everyone from ever getting any cancer? The answer comes from a proper understanding of the principles of screening, those seven criteria made famous by Wilson and Jungner that every medical student learns (and forgets immediately, if they are anything like me). Basically, the test should be acceptable and make a difference to the outcome for most people (but not all), and the benefits should justify the costs. Carrying out screening can turn a “person” into a “case”, and there are significant responsibilities associated with that. Why would someone who feels perfectly well subject themselves to a medical test? Why would you go out of your way to be poked or prodded or procedured? Particularly when the screening test involves intimate bits of you like your breasts, vagina and poo?

Doctors like screening because it helps them to find cancers at an earlier stage, when it can be chopped out without too much fuss, and they can use their favourite word – “cured”!

People like screening because it makes them feel safe, and responsible, and protected. We are understandably terrified of the idea of serious illness, especially cancer, so we choose to do things that will stop it from happening to us. Or, at least, that’s what we think we are doing. We can get bored quite easily by the old chestnuts of healthy eating and exercise and no smoking and no drinking and no craic and no crack and no bacon and no radon and blah blah blah fingers in the ears. It is much more proactive and scientific to get a proper doctory test done with forms and signatures and result letters and all sorts of officialness which tells us, in carefully crafted language, that we are All Clear. Sorted! Let the crack-soaked bacon cocktails roll!!

It is quite a shock, then, to discover that the fancy official test and fancy official result are not bullet-proof guarantees that you won’t get cancer. And you get cancer anyway. That cancer, the one you got tested for. That very bloody cancer. How lousy is that? What’s the effing point so?

The point is that, although you were unlucky and got the cancer, some other people who did the test didn’t get cancer. Or they did, and it was found and treated quickly, and now they are better. You didn’t do anything wrong. They didn’t do anything right. It just happened that way. Because that's how screening works. If more people do the screening test, the number of people who don’t get nasty cancer will go up. The number of people who DO get it won’t necessarily go down, but the percentage of them will. Statistics is a head-melt. The screening test isn’t really for you, it’s for everyone. That is also a head-melt. 

So am I happier that I got a cancer that no one was looking for? Should I be cross that I wasn’t being checked for it? Would it help me to be cross? Would I be more cross if I had been checked for it, and they didn’t find it? How cross would I be if they had offered to check for it, and I didn’t get around to having the test, and then I got it? Another head-melt. 

I am lucky. I got an unbelievably unlucky cancer, and I lucked my way out of it. I am grateful. I am not angry. I don’t feel let down. 

That said, I don’t think about it too much. And I’ll take any screening test going, just in case. 

Cry Baby

I have been precipitously close to tears for the past few weeks. It probably started, fairly unsurprisingly, with the Late Late Toy Show, and sort of snowballed from there. The intense emotional battering that has been bubbling away beneath the service of all our lives this year was bound to start spurting through the cracks once we got to the Year-In-Review end of the TV schedule. 

I am no stranger to the Chin Up and Shut Up school of psychological containment, preferring to barge along chirpily while all around me goes to shite. But there is always a leaky pipe somewhere along the way, a rogue lacrimal duct that decides to get all expressive and wussy, distilling the tight knots of anxiety fighting with each other in my muscles into a pure salty drop of liquid sadness, trickling inexorably down my hot cheek and into the corner of my mouth. And then another follows, and another, and then the other eye starts. And sure then it is simply time to submit, admit defeat, allow all the bloody floodgates to open and indulge in one of those shoulder-shuddering sobfests that make you feel so good.

But I seem to be a bit stuck. The knowledge that we are not done, that this is not yet over, that we may not even be half way through, is pushing on my chest and forbidding me from leaving it all go. Losing the plot now would be a disaster. Got. To. Keep. Going. 

I watched Black Panther again last week. The beautiful sweet power of the movie, the gorgeous accents, the subtle yet groundbreaking imagery of heroic black women in traditional hairstyles; all of this would usually be enough to get my heart soaring and the tears flowing. But I watched it on my 44th birthday, six years and a couple of weeks after I was diagnosed with stage 4 bowel cancer. Chadwick Boseman would have turned 44 two weeks before me, if he hadn't died earlier this year from the same cancer. He was diagnosed after me (as far as I know), and made Black Panther while undergoing treatment. I looked at him and thought about  all the things I know that he knew, the experiences we had likely shared, and I was consumed by survivor's guilt. He struck me as being a kind, good person, and that is as good as it gets. I felt his loss in my heart. 

On Friday, at the end of a very busy week of patients, colleagues, assignments, presentations, deadlines, late deliveries, early mornings, painful scars, aching bones, lashing rain, muddy builders and strung-out children, I got into the car to drive to the sea and meet an old friend. The traffic was terrible; that mid-December grimness of foggy windows, squeaking wind-wipers, huddled pedestrians throwing themselves into the road and general ill-will (oh that wonderful Christmas spirit). My shoulders were up to my ears, my jaws jammed together, my heart pounding. The chirpy Christmas tunes on the radio were starting to grate. I changed the channel and heard the opening bars of Daft Punk's Get Lucky. I once named a blog post after that song, back in 2017, the day after the second Doctors' Disco where I had met and chatted and danced with oodles of friends, and I had written about the gratitude I had felt at being able to do all of that. I was grateful that my illness hadn't stopped me from being able to throw myself onto a dancefloor with dozens of people and natter away into the night about god knows what. Little did I know that three years later none of us would be able to do any of that, for weeks and months on end. No random lunches during the working day. No girlie weekends in elegant cities. No 5pm pints of stout looking out over North Harbour. No intense and exhilarating conference-running. No lingering in the restaurant, howling with laughter while the waiting staff pointedly stack the chairs and noisily load the dishwasher, hoping we'll get the hint and leave. No nights away just because, no nights in on purpose. 

So I thought about all that we had lost this year, all that we had missed. And I thought about how I could have missed this all too. And my brain melted a bit, and I cried big ploppy sloppy tears. 

But I couldn't fully let go. I couldn't sob. 

Got. To. Keep. Going. 

Get Lucky

It's the morning after the night before.
It is too early. 
The sunshine and silence outside are perfect. Still. Sharp. 
There is no noise, the children are elsewhere. 
There is no noise, no huffy breathing, no bed-clambering, no Daddy Pig oinks.

My heels have blisters. My face is hot and puffy. My all-over body ache, that I sometimes allow myself quietly to call fibromyalgia, is peaking. 

And once again, it all feels good. 

We were dancing again, last night. 
We booked ourselves a dancefloor and a DJ and we asked our friends to join us, so that we - I - could dance. 
And this time, this time, was the time I cried tears of relief that I could do it, and tears of joy at simply moving, and tears of gratitude for a future that holds more dancing.  

Thank you, once again, to my collaborators, accomplices, and facilitators. 
I am truly grateful to everyone of you.
And truly lucky.

Pros and Cons

I have a fairly robust catalogue of defence mechanisms to help to keep me vaguely sane, the chief of which is to fill my brain with Other Stuff and ignore the Fear and Dread of Cancer as much as possible. 

But the fact of the matter is that I am now living in a parallel Alive universe when I am supposed to be Dead. An actual real-life Limbo.

I was diagnosed with the kind of omnishambles of a cancer situation that everyone knows would kill you stone dead in a matter of months. I had the full range of reactions from doctor-friends that reinforced this truth - the ones who said “oh don’t talk like that” and then crumbled into tears, the ones who looked at me knowingly with “you’re a goner” scrolling across their faces, the ones who crossed the street to avoid having to decide which version they wanted to be. I never had the how-long-do-I-have? conversation with any of my consultants because it was appallingly apparent to us all that the answer was Not Long. 

That was four and a half years ago. Now no one, least of all me, has a bloody clue what to say. Am I cured? Will I live as long or short as anyone else? Do I have cancer now, if none can be seen on a CT? 

What I have are the constant reminders. 

I cannot donate blood, because I was lucky enough to get two units of it when my Hb was 7.6.

I cannot donate my organs, as far as I know.

I cannot get life insurance or mortgage protection (but - clever me! - I got them before I was Riddled, so the poor actuaries were foiled. Heh heh.)

I cannot lie properly on my right side, because I have a Portacath in my upper chest wall, that is now so tethered and ropey that having it removed would be tiresome. So I toss and turn in bed, woken by the numbness in my right arm when something happens that must be related to my subclavian artery, or vein, or something [I am putting this little snippet in here in the hopes that a clever vascular surgeon will write in to the editor to explain this phenomenon for me.]

I have to do complicated maths on the economics of having a long-acting contraceptive device put in. I mean, how long-acting will I actually need?

I need the LARC, though, because I cannot have any more children in case my cancer recurs and I would have to choose between me and the baby, and I cannot say hand on heart that the baby would win. I mourn for this potential baby that I might never have had.

I am periodically surprised by the reminder message on my phone that it is time to have my portacath flushed. I bluster my way through this experience, jovially fielding the “my god aren’t you so young/so lucky/so unlucky” comments that come with each new CIT nurse. 

I say nothing when people talk about their plans for next year, or talk about getting old.

I try not to dwell on potential milestones - first days at school, fiftieth birthdays, wedding anniversaries. 

I say “yes” when people invite me to events in the future, knowing that my seat might be empty. 

I have recurring dreams that I have left my children alone somewhere. 

I lie when I go to fancy spas, and tell them that the scars all over me are from a “minor procedure”. I count on the lighting being so soothingly low that they will not notice the radiotherapy tattoos, and I brush off the portacath as a “medical device”.

I say Yes to the dentist’s enquiry if I might be stressed, when he discovers the huge crack in my molar from violent bruxism.

I have stopped making virtual friends with fellow cancer sufferers online because - you know what? - a load of them died.

And then there are the scans. And the scanxiety. And the somatisation. And the erosion of the gastric mucosa while waiting for the results. 

On a day when my head is bursting to the brim with conference-organising or website-building or network-working, it is only the occasional little You’re Going to Abandon Your Children thought that squeezes its way into my consciousness. On the days where I have neglected to cram in as much brainwork as possible, the visceral dread seeps up to my shoulders and billows out into a filthy putrid cloud around my head, and makes me lose my breath. The chest pain starts, and the hyperventilation, and the bile rises into my throat. 

On those days, it is a Half-Life that I lead. 

But it’s a life I have been gifted, and I live it every day. 

Terminalogy

I’m going to go out on a limb here. 

Stage 4, metastatic, advanced cancer. 

Not the same as terminal. 

It is likely to become terminal, but it is not the same. 

You can be one, and not the other (with a probable yet in brackets).

So arbitrary rules that apply to terminal illness do not automatically apply to stage 4 cancer.

Free medical care for all would be a wonderful thing. Free medical care for all cancer patients would be a wonderful thing. 
But health economics is a tricky complicated multi-faceted balancing act, and unfortunately at present it is simply not possible to provide free healthcare for all of those people (remembering that 50% of us will get cancer). So then we need to decide which cancers are more cancerous than others. Well, there’s no stage 5, so stage 4 wins, right? 
But I still work as much as I can, and I am lucky enough to have income protection payments. I don’t have to have any treatment currently. I am well. And I have stage 4 cancer.

I don’t believe I should automatically get a medical card.

There.
I’ve said it. 

Another perk that terminal patients get is amnesty from all public confrontation, criticism or approbation. 

Unfortunately I realise I have talked myself out of deserving that. 

It is one of the things I look forward to, when my time comes. 

But I am not entitled to it yet.

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 ;-)

Autumn Leaves

I wonder why so many people like autumn. Long before we had heard of hygge and pumpkin spiced lattes, many of my friends would say things like “thank god for tights” and celebrate when the heating spontaneously sparked up on a random September morning. 

I think it’s because summer is just too much pressure. MUST enjoy ourselves. MUST get out in the sunshine. MUST be all golden and glowy and active and lithe. MUST HAVE FUN!!

We had quite a topsy turvy summer. 

It began with our youngest daughter being sicker than any child of mine has ever been before. She had a perforated appendix and we spent five nights in hospital. It was horrific. 

She’s better now, thank goodness. 

Her main concern was that her scars would be healed in time for our massive family holiday in Mallorca in July. A gathering of nearly two dozen Fitzgibbons+ in one place. Yikes. 

It was lovely – hectic, but lovely. We celebrated my mother’s 80^th birthday, in the same place we celebrated other family birthdays before, and it is humbling to think how lucky we are to still be able to come together in this way, without illness (or homicide) coming between us. 

I was feeling a bit off while we were there, because my belly had mysteriously swelled up in the few days before our departure. I had had my routine surveillance scan just a couple of weeks earlier, and that was stable, so I figured my guts were just reacting to the anticipatory anxiety of the big get-together. It didn’t stop me from swimming every day or clambering over the hot rocks, so I wasn’t too concerned. 

When we got home I assumed things would settle down. Instead my belly button kept bulging more and more – I have a hernia there since one of my operations, and it is like a little sentinel of bloating, a reminder to lay off the white bread. But this time it was staying stuck, and I started to worry that it might be incarcerated (which is not a good thing for a hernia). I have an inguinal hernia too, and that was beginning to bulge alarmingly. 

I decided I better do something, before my entire guts burst out of my abdominal wall. I went to the Emergency Department, which actually isn’t as bad as people make out. I met some lovely nurses and doctors, who very gradually and carefully let me know that my pregnant-looking abdomen was not due to an overdose of baguette, or a strangulated loop of bowel, but was in fact a result of litres and litres of fluid filling my peritoneal cavity. This is called ascites, and if you say that word to a medical person they are physically incapable of stopping their face from saying “oh shit”, even if they try to shrug it off and smile a fake smile. 

Ascites is generally a result of liver failure, or else a few other things that are even worse news. 

My liver was fine. 

The word “curtains” went through my head a number of times.

This was unlikely to work out well. 

I had a drain inserted to relieve the pressure, which was by now pretty excruciating. 

Many many litres of apple-juice-looking fluid came out of me. I felt, and looked, a lot better. 

None of the apple juice had any cancer cells in it. Weird. 

Still though, it was very likely to be from the cancer. 

I left hospital and entered full-scale denial. Off camping for the week. Lovely. 

I felt so good I declined the offer of returning early from our week away to have a permanent abdominal drain inserted. Sure wasn’t I grand? Not a thing wrong with me. 

A couple of days later I was bursting again. Unable to move in the bed without severe pain. Feeling about 50 weeks pregnant. I had to go back to the ED. 

This time my hospital stay was quite a bit grimmer, for a number of reasons. Mostly because I felt like an idiot for not pre-empting it by having the drain put in when it was offered. 

Anyway, the very kind people didn’t hold my stupidness against me, and gave me lovely drugs while they tunnelled a tube into my belly flesh. This device allows me to attach a bag to myself whenever my tummy swells, so that I can harvest another litre or two of apple juice and prevent the pain and waistband-bursting expansion. 

I’ve been doing this now every couple of days for 5 weeks or so. It’s a strange sensation, like a tiny vacuum cleaner swooshing around in my innards. The fluid even flutters and rumbles, very similar to the feeling of a baby moving around in there. But this time I have no idea of my due date. 

I had a PET scan which was expected to confirm that my cancer had spread to my peritoneum (the lining of my abdomen). This was the most likely cause for the ascites, and even though there were no cancer cells in any of the many samples of fluid that were sent to the lab, we still assumed that the PET scan would show little shiny white spots of metastases in my belly sac. It didn’t. 

It showed some bits of something that could be metastases, but they didn’t light up like my liver had last year. My liver is all calm and quiet now, subdued by my last round of chemo. And these peritoneal nodules are not “avid” (that’s PET-scan speak), they are more like Ferris Bueller in a chemistry class. Languid. 

Right now, I don’t really know where I stand. 

I will have a laparoscopy, where a learned chap will look into my abdomen with a camera and see if he can spot some nasties. And if he does, he is a dab hand at eviscerating them. Only thing is, that often involves excavating quite a few innocent viscera too. Peritoneal surgery is no walk in the park, and has to happen in Dublin which is an additional urgh for me. But of course I will be grateful and happy that learned chaps are willing to do what they can to continue to prolong my life. 

So autumn has begun with me regularly harvesting apple juice from my own tummy, and pondering the march of time. 

Winter is ahead. Let’s get those cosy pyjamas out. 

Not Me

In our house growing up there were six children, plus a seventh ephemeral being known as "Not Me".
This entity (it had no gender) was invariably present whenever a wrongdoing had been detected - a broken cup, a busted lip, a stolen fiver. 
"WHO DID THIS?" 
"Umm [you guessed it], Not Me."

I am not about to fess up to a 35-year-old misdemeanour (though, yes, it was me who picked all the wallpaper off the wall). 

I want to put my hand up and say, instead of #MeToo, #NotMe.

I am one of the lucky ones, one of the minority (yay! another minority to be in! kudos).

I have never been assaulted, raped, beaten, psychologically disintegrated, molested or mentally tortured. 

But I know, personally and professionally, individuals who have endured all of these things. I have looked into the eyes of people who have been in fear of their lives because they were a victim, a target, an opportunity, a soft touch. 

I confronted a man who had committed a crime, though I was too young at the time to realise that's what it was. I was not his victim and I thought I was a heroine, swooping in to avenge on someone else's behalf. Looking back, all that happened was that he patronised me out of it, and I failed to report his sorry ass for using his position of power to abuse young women. He moved on.

I giggled when a very famous individual groped my knee - I was too giddy at the excitement of a bottle of under-age cider, and besides, he was just a drunken dirty old man with fancy French shirts and a big boat. I knew my father didn't vote for him anyway. 

I was less impressed when a pudgy, also-famous, fella decided to give me a big wet kiss on my cheek just because some football match had finished with a score that pleased him. But I was hardly going to make a big deal out of that now, was I? There I was, shouting Man On and Square Ball and Refereeeee! so I I was obviously into the whole thing, and as the only woman in the room I was surely going to offer up a cheek in celebration? Hardly worth getting my knickers in a knot over. 

And the point is, these are only minor transgressions in the scheme of things. They annoyed me, like wolf-whistles are annoying, or sniggers, or inappropriate jokes. These are the baseline. You do not get through life as a woman without some of these. 

There are the other grey-area ones, about consent, or not. There's always a few of those scattered around in the past. 

But I have been lucky, and I realise it. 

However, I cannot abandon those fear-filled eyes that have looked into mine. I cannot walk away from the bruised cheekbones, the crushed spirit, the defeat. 

I cannot join in with the "Erra don't mind your bloody Women's Day business. What about the poor men?" carry-on. 

I don't want to see that fear in anyone's eyes, male or female. I don't want to hear about relentless emotional abuse and degradation from anyone, male or female. 

It just so happens, that in 18 years of doctoring, the majority of those eyes have belonged to women. 

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.

Climb Every Mountain

People I have never met were telling me to get up off my arse last week. 

For someone who is not good at taking instruction, that was hard. 

Not as hard as trying to lift 65kg of creaking bones up out of a snowdrift while skeeting sideways on gigantic skis, though. 
With non-existent abdominal muscles, a recently-injected rotator cuff tendinitis, and a big dose of Poor Me.
As well as the ignominy of seeing my nine-year-old scoot past me, snow spraying dramatically into my face as she skidded to a perfect halt at the end of the (teeny) slope, and said, "Did you fall again, Mummy?"

Once again, I am reminded of the wisdom of Homer (Simpson, not the other lad): If at first you don't succeed, give up. 
Nevertheless, she persisted.
And fell over, and fell over, and fell over. 

I could have helped myself, by taking all the advice (available in spades) and paying attention to the small details. 
Put on the boots right Day One.
Keep your knees bent (or is that straight?) Thud.
Look where you're going. Eh, duhh. Thud.
Plough. Pizza. Plough. Thud.

I may have got a bit cranky. I may not have expressed verbally how mind-blowing it was to be heading up an actual Alp, the fiery cold air in my lungs, the treetops poking out of the perfect white blanket, the wide-eyed astonishment of the young faces against the perspex of the it's-ok-it's-Swiss-so-it-must-be-safe Great Glass Elevator thingy whooshing us up and up and ear-poppingly up. 

I complained that any holiday that involved Lugging and Exhaustion and Wrecked and Worth It Though in its previews was destined to be a struggle. I whinged about the searing pain in my calves. "I thought I knew pain", I said (cos, like, cancer and that). "Torture", I said. 
But holy god it was lovely up there, snow-angelling away the muscle aches, watching the spreading joy of mastery in the quick-learning low-gravity-centred lucky sods around me. 

We returned the Calf-Torture Devices and went back up the mountain without them for one last hurrah. Hurrah! 
We have all the gear now, and we know all the tricks, so we'll be back. (No guarantee that the bargain basement stuff we bought will survive to next year, but then again, you could say the same for me).


Thank you, Spreadsheet Man. 


A closing thought on abbreviations.
CHF = Swiss Francs
CHF = Congestive Heart Failure
A coincidence? Not when you see the prices.

Happy New Year

I didn't intend to leave such a long gap between posts, and I didn't mean to make a big deal of January 1st by suddenly re-emerging into the blogosphere, but there you go. I guess I am innately melodramatic. 

The main news is that I went to see the Top Man in the posh place in Dublin. 
I was right, my insurance doesn't cover it. 
After sitting in the plush waiting room (for the same length of time I would have in HSEville) with the free coffee, the photocopied crosswords on the tables, the polished leather armchairs, the exceptionally ancient fellow patients, I go into to see The Man. He looks at my scans, says things like "blimey, what's that?" while occasionally glancing at me, tries to make thin banter about the Real Capital, and pronounces that yes indeed he can fix me no bother. 

"Emm but my insurance won't pay for it."
"Of course it will."
"Emm no it won't."
Given that we were right in the middle of Panto season, this could have gone on for some time. 
Thankfully, he is a man in a hurry and with secretaries, so he got them to do the next bout of to-ing and fro-ing. 
And indeed, once again, the getting-a-bit-impatient insurance lady said No.

"Not to worry, we will make you a public patient and the State will pay for you."
"Sure that's fine so."

Some minor protocol-avoiding meant I could toddle home again that evening and get stuck into the Christmas mayhem, and forget about the CyberKnife spongeing that I will be doing in a few weeks.


Outside of all this cancer stuff there was a lot more fun going on. 
I became one of the very few women who is ecstatic to be forty. Couldn't be happier to be getting old and grey.
I had a good party.

The week before, we went to a 50th birthday party. The week after, we went to a 90th. I like the maths of that. 

We had a pathetically wholesome Christmas, with beside-ourselves excitement when Santa came, and a swim in the sea which reaped huge respect despite it being really not that cold at all. I was very tempted to go for the bikini to show off my lovely scar, which would have notched the kudos level up to 11. But I don't like to be a drama queen....

Board games, organised exercise, chats, leaky mince pies, champagne, stinky cheese. We had the lot. 

And inevitably I am here now on the first day of the new year, thinking how grateful I am to be here, how lucky I am to have the people I love in my life, and how wonderful the world is.

Over the top? 

Maybe just a little bit. But it's my party!

Treacle

Harrumph.

Sigh.

Really?

Oh right. 

It's just the same. Every day. Punxsutawney Phil and all that goes with him. 

But it's not the same, because actually each day the heart sinks a little bit lower, the brain slows down a little bit more, the shoulders slump closer to the ground. 

Eeyore would be in his element. 

Wading through treacle, as my wise colleague Gabrielle has said. Or a slurry pit, with equally risky consequences. 

The first time around we had adrenaline, claps, free chocolate bars, free live music streamed to our couches. We had warm evenings. Food delivery was a novelty. Zoom was like something out of Star Wars, for those of us who grew up in a house where the phone was locked with an actual key. We dressed up for pretend nights out. We camped in the garden for our holidays. Oh What Fun we had! It was like something out of Enid Blyton, without the weird colonial overtones and god-knows-what undertones. 

The "second lockdown" was a pathetically understated affair. My life changed not a single iota, except that we missed our chance to go to a fancy restaurant. Then came the great escape of the December opening up. What a bloody omnishambles that was. We went to the local (not fancy) restaurant and I hated every minute of it. All I could see was those goddamn spiky-ball virus particles swirling around our heads, swarming towards our mouths and noses. I ran out of there and scrubbed myself clean when we got home. Oh What Fun. 

And then the deluge of phonecalls at work. Cough. Sore throat. Headache. Sore body. Feel funny. Partner positive. Mother positive. Aunty positive. Granny positive. All 24 guests at my wedding positive. And the waiting staff. And the receptionist in the hotel. And the priest. And the lead mourner at the funeral the priest did the next day. And so on, and so on, and so on....

The covid calls began to calm down, just trickling in every other day or so. There were more of the "my heart is beating really fast in my chest and I don't know why" calls, and the "I have panic attacks on my way to work" calls, and the "my son with special needs is desperately in need of routine and support" calls.

And the homeschooling. Emergency education, someone called it, and that makes so much more sense. Teaching phonetics with dopey rhymes that I can't remember. Arguing about whether a semi-circle has corners. Having a mental awareness at all times of how lucky we are to have enough devices, enough broadband, enough heat and food in the house. Getting irritated at not being the kind of person who allows themselves to wallow in self-pity. 

And then there are the ups. Driving into my workplace with tears in my eyes because the sun is shining, there are helpful happy guards outside directing hopeful happy older people and their helpful happy relatives inside to get their first shot of the vaccine. The practice is full of chatter and laughter. The sun is streaming in. It is a beautiful day. 

They are almost no phonecalls about coughs or temperatures now. I am able to ask the person with the sore knee, or funny thing on their face, or a pain in their side, if they would like to come in to see me. They are relieved, and so am I.

Some things that I have been planning for a while are coming to fruition. Some things require fizzy bubbles to celebrate. There is hope. 

But it is still All. Quite. Hard. 

Still Working

I tell people I am getting chemo every two weeks, but that is not entirely true. 

I am often tempted by my innate tendency to divilment, to write things that are not fully veracious, just for the giggle. I could tell people I have been cured by angels, or that I take ivermectin every second day, or that tequila slammers have been the key to my recovery.

None of those things is true. And in the spirit of full disclosure, I am not actually getting chemo. I am getting cetuximab, which is a monoclonal antibody and therefore known as a targeted therapy, rather than a chemotherapy. 

Collectively, the various gunks that they administer to knobble cancer are called Systemic Anti-Cancer Treatment, or SACT. 

As in, your cancer gets sacked. Out on its ear. (Unless you have ear cancer, in which case out on its something else).

Redundified. Severanced. Forcibly quitted. 

Or, if you are of a more medieval mindset, pillaged. Ravaged. Destroyed.

That is the plan anyway. 

"Medieval" comes to mind when I feel the teeny but acutely painful paper cuts around my fingernail as they greet an unexpected drop of lemon juice or try to press on an unyielding remote control button. Persistent, consistent, insistent shoots of pain all day and night, from pathetic little scars that look so insignificant. 

This is the main side effect from the cetuximab. Other little joys include ridiculously long eyelashes which brush off the inside of my glasses, and a lovely pustular rash on my face, back and chest. I may have mentioned this before, but don't at me, as they say. 

It doesn't cause my immunity to drop or make me particularly tired. It takes about 4 hours to administer and I pop into the lovely "chemo" ward people every two weeks where they sort me out. (I think the chances of them changing the name to the SACT Ward are small). 

I had scans before Christmas which show a sustained improvement in my liver tumour and nothing new anywhere else, so all is good. 

I have come to accept the likelihood that I will need to stay on some maintenance treatment into the future; like, looonnnggg into the future. I was ferociously lucky to get away without it before. Nearly every other Stage 4 bowel cancer patient I know has needed some kind of ongoing therapy to keep them ticking over. I was special but now I am definitely not.

It's fine, like. 

It messes a bit with my thoughts about returning to active duty as a GP.  I will have to ponder that. 

For the moment, I am delighted to keep working with the wonderful people in the National Screening Service, while the wonderful people in the Mercy University Hospital are still working to keep me alive and well.