Thursday, 14 June 2018

Work

It's a thorny one. The work issue. 

I spend a lot of my own work talking to other people about their work. Either they want to and can't, or they don't want to but can, or they're not sure and they want me to decide for them.

It is possibly the one area where I have become less sympathetic rather than more so,  since I've had my own experience of ill-health.

We know doctors don't do sickness, and a big part of that is not doing absenteeism. We simply aren't into it. It is not a neutral subject for us. We are not like, "eh, whatevs" about whether we go to work or not on any given day. We are defined by, nourished by, enraged-but-captivated-by our work. It is not a meh kind of job. It is horrific, excoriating, exhausting, illuminating, inspiring, breath-taking. 

So we are not best placed to make a judgment call about whether taking a few duvet days is a reasonable thing to do if you've had a bit of a cold, or whether a few extra weeks tacked on to the end of a gallbladder op recovery period is just what anyone would do in the same boat. Our boat is nothing like other people's boats. Ours is leaky, and carrying a lot of sick people who are glaring at us saying "C'mere, where are you going, Captain? We need you!" (Some of this is the usual "doctors-thinking-they're-gods" hyperbole. Some of this).

By dint of our stubborn pig-headed inflated-ego-driven work ethic, we are a useful study group for anyone trying to figure out if work is good for you when you are faced with a life-altering illness. Because whether it's good for us or not, we will work through pretty much every adverse condition you can throw at us. 

Sometimes that's not very wise. I do recall sitting in a consulting room the size of a wardrobe with a patient whose TB was so active he was actually wearing the mask they give infectious people (but never really expect them to wear). My white cell count was diddly-squat (making me very prone to life-threatening infections) but I just held my breath and nodded at him for the five minutes it took me to fill in his social welfare cert. 

In season 2 of The Handmaid's Tale (which is about a fictional dystopian world, Gilead, where women are fierce oppressed altogether), two women work together in secret because the man is too sick to fulfil his duties and they need to cover for him. They were both professionals in their former lives, but that right had been taken away from them. They enlist the help of another woman, who was formerly a neonatologist (and who can now cure the apparently-moribund-but-healthiest-looking 10-month old I've ever seen). The handmaid (who is about as shat-on as it is possible to be) isn't even allowed to own a pencil, in case she would go around inciting subversion (or making lists of jobs for the man to do). When the two women get the opportunity to use their skills again, to activate their long-dormant knowledge and experience, they are elated and, almost unheard of in Gilead, actually smiling (cue lingering close-up...)

There is worth to work that exceeds financial reward. Yet there is almost a universal assumption that when you are sick or injured, that you should not work. Of course you shouldn't work if you simply can't - I don't think I would have been on the top of my doctoring game if I saw a few patients while I was off my trolley on fentanyl in ICU - but I am talking more about long-term absences, particularly related to cancer. 

When I first asked my oncologist if I could work, he said why not? He had spent many years in the US, where patients had to go to work because the welfare system is so shite, and they needed to earn money to pay for their treatment. That doesn't sound like the ideal scenario for rehab and recovery. But in Ireland, I think more cancer patients could be supported and encouraged to explore the possibility of returning to work, perhaps in a reduced capacity or in a different role. The organisation Working With Cancer is a UK-based enterprise which aims to support both employers and employees in dealing with return to work after cancer diagnosis and treatment. I have not come across anything equivalent in Ireland.

In the past three and a half years, the times that I have been most down, most despondent, have been related to feeling that I have not been pulling my weight at work. I have realised, though, that I cannot commit myself entirely to one job, or one kind of work, as it quickly wears me down and wears me out. Instead, I have found that working on projects about which I am truly passionate has lifted me out of any tendency to wallow or ruminate. Taking on new challenges, trying things I have never done before, walking into a room of strangers and saying "hello" - these are all things that I shied away from in the past. It seemed that life would be so much easier if you just ride along with it, keeping your head down, doing the same old same old, day in day out. Using cliches like those and not even realising it. But that is what crushes you, makes you flat, makes you two-dimensional. 

Do something that makes you think you're great. It's a good feeling.







Thursday, 24 May 2018

Other-End-Oscopy

(Thanks for the title, Doug)

I am horrified to realise that I have come all this way without ever sharing with you all (The Masses, I'll have to call ye) about the delight that is a colonoscopy. 

How could I have neglected this important part of your education about the life of a bowel cancer patient? 

Perhaps because the thought of it makes me gag. Because as soon as the last one is over I shut my eyes and cover my ears and mutter "la la la la" and hope it all goes away and never comes back (a bit like some No voters...)

But as long as I am alive (cue multiple reassuring sounds and uncomfortable shuffling of feet), I will need to have regular colonoscopies. 
No one knows quite how regular, because guidelines on how to appropriately manage Stage 4 cancer patients generally extend as far as "Try a few things, then book the hospice". 
There are more and more of us now though. "Survivors". Oh how we detest the word. 
"Living with and beyond cancer" is the trendier term. There's gazillions of us roaming around. Semi-riddled. Given the Half-Clear. Terminal in the Ryanair sense (a few miles away from the real thing). And we need to be monitored to see when/if we return to what's statistically expected of us, like good little no-hopers. 

That means scans every now and then, or then and now, or whenever we get an ache or a lump, or when our private vs public status allows.

It means scoping up and down and sideways (for ear cancer, like). It means PETs that aren't cuddly. It means ear-thundering MRIs, cold-gelled ultrasounds, tumour marker blood tests (they're hilarious; never before have I seen so many disclaimers at the bottom of a lab report. Useful only if they're so high that the cancer itself has walked to the hospital and slapped itself onto the lab counter).

I don't like to get into the My-Cancer-Is-Worse-Than-Yours game (Rubbish. I totally do. Cos I would WIN).
But no other cancer requires the regular ingestion of what can only be described as the Serum of Saruman mixed with Dib-Dab powder. There has got to be a better way. Two litres of the stuff has to be got through, allegedly over 3-4 hours but it takes me a whole day. I hold me nose, I drink through a straw, I add ice. I still have tears running down my face, and full-scale gagging noises coming from deep inside me.

And then there's the "outcome". The "output". The "desired effect". 

I've had proper dangerous tropical diarrhoea, requiring me to knock on the door of a Slightly-More-Than-A-Hut type dwelling at the side of the road in rural Kenya, begging to use their hole in the ground (it was in a separate hut - I knew the place was fancy). That was pretty bad. 

But hour after hour after hour of hearing what sounds like a full carwash bucket being sluiced down the toilet, knowing that it has come from the bit of you that doesn't usually make such waterfall-y noises, is quite an experience. 

We always learned that cholera causes severe, life-threatening watery diarrhoea. I don't think I fully understood what this meant until I saw litres of wee-coloured stuff coming from my butt.

I found this list of helpful advice:
















I mean, who doesn't love a bit of gelatin? Melted horse hooves - what's not to like?
Number 9 could result in Actual Bodily Harm.
Number 10 is a bit contingent, isn't it? You only get the reward if your colonoscopy is "successful". Define, please? Successful if it finds a huge tumour and you haven't wasted everyone's time?

My top tips are as follows

  1. Scald off your tastebuds a few days in advance with some boiling tea.
  2. Ban all eating, by anyone in your house, for the full fasting period.
  3. Don't do the weekly grocery shop when the next food to pass your lips is 24 hours away.
  4. This one isn't mine, but it seems wise: don't attempt to mow the lawn after taking the prep (thanks RK!)
  5. Grin and bear it. Your reward will be the deliciousness of drug-induced sleep, followed by the ambrosia of hospital tea and toast. 

Bottoms up!








Sunday, 22 April 2018

Never Better

In a couple of weeks I'll be going back to Dublin for some more of the fancy radiotherapy I had last year. 
(SABR is it's official title, I've learned, which means stereotactic ablative radiotherapy, but also has a pretty appropriate meaning in Arabic).

I have to go back because there are two small white bits on my CT scans in my right lung. They've been there a while, on three scans in a row. They're a little bit bigger now than they were four months ago. 5mm now instead of 4. Or something weenchy like that. 

They could be cancer. They could be snot. They could be little pieces of popcorn I inhaled while I snoozed on the couch. 

I have metastatic cancer, cancer that spreads. Once the cat is out of the bag, you can never get it back in again. Even if the cat is really good at hiding, you know it's out there somewhere. (Let's not even get Shrodinger-y about this; my brain might burst).

So when stuff pops up that "could be cancer", the wise money is on it, in fact, being cancer. Not snot. Or popcorn. 

I could takes my chances and stand firm on the snotcorn theory. I could have another few scans and see does it suddenly leap out of the picture hissing and spitting, saying "I AM cancer you dumbass, what did you think I was? A misplaced salty cinema snack??" 

But the Too-Lateness of that is a little bit offputting.

So I will set the GPS for Poshville again and go for a few sessions of very expensive snotcorn removal.