Monday 31 August 2015

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. 

Friday 21 August 2015

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.


Thursday 20 August 2015

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.