Thursday, 26 March 2015

A dead SIRT

So this week I am at the cutting edge of medicine in our fine city’s Centre of Excellence. 

When I was in college the swots and go-getters were determined to do their internship in this place. It was where you went if you wanted to Get Ahead. 
I didn’t. I purposefully avoided the place. I chose to work in the calmer cosier environs of the Voluntary Hospitals (anyway, who wants to work somewhere that’s Involuntary?)
The go-getters liked wearing shiny pointy shoes and clicking their way up and down the corridors, studiously not answering their bleeps and talking about their research into peptides or whatever. And that was just the porters. 

So I don’t have very warm feelings for the place. 

I did get a private room though, which is about five billion times better than being in a noisy ward. And a bathroom en suite. Not as clean as you’d like. I won’t elaborate.
There is a fridge and a little mini hi-fi in the room with me. Should have brought my half-empty (I mean half-full! half-full!) bottle of Prosecco from home and a Van Morrison CD. There’s a TV but no one can find the remote. There’s very variable wi-fi. The bed is comfy and the novelty of pressing the buttons to move it up and down still hasn’t worn off. 

In a further addition to the “I Didn’t Think That Through” Chronicles, I have to have a catheter inserted at 5:30am. (I would provide a warning about too much information but I think if you’ve got this far with me that’s a bit late.) No breakfast allowed. I can hear the trolley rattling up and down the corridor outside and can imagine the little steel pots with their scalding thick brown tea in them, and the purple plastic bowls of pale yellow catering cornflakes. Starving.

Eventually I get wheeled down the corridor in my bed, steered by Little and Large porters. I am truly mortified this time, ducking my head in case I see someone I recognise. Even though the bag of wee is hidden under the covers, there’s something about knowing that it’s there that gives you the feeling of standing in the street and realising you forgot to put your trousers on.


Then we reach the xray holding bay and the thought of a panic attack enters my head. Which is really almost as bad as a panic attack itself. I get flashbacks to fifteen years ago (helped by the fact that not a single thing has changed here in that time - I’d swear there’s the same lone Thank You card pinned to the notice board.) We used to have to accompany patients from the Voluntary Hospital to the Centre of Excellence for angiograms, as such technology hadn’t yet reached the southern suburbs, and the intern’s job was to press on the poor individual’s femoral artery after the angio was done to prevent him from bleeding to death. I never once felt in control during that process and spent eight sweaty hours every Tuesday for two months terrified that the fella would exsanguinate and it would be all my fault. It never crossed my mind to ask for help, or to suggest that the burly cardiologist with hands like spades might do a better and more efficient job than the little scrawny girly intern with matchstick fingers. 

I lie back in the same cubicle that we were in when a relatively young man did indeed start spurting arterial blood all over me, while I frantically tried to find the pulsing hole again under the ever-increasing pool of blood. He started to go a little pale, then a bit green, until at last I got the bleeding to stop. In reality it was probably only a 100ml or so that spurted out, but neither he nor I was the better for the experience. 

I really hope they don’t get the interns to do that any more. It is the only question I have when the slightly socially awkward radiologist (is there any other kind?) comes around. I sign a consent form for Mesenteric Angiography +/- embolisation +/- MRA. Yeah me neither.

It takes a while to get everything set up while I am on the hard narrow bed in the angio room. I had walked myself in there, eager to show off how alive I am, and how nonchalantly I can stroll around carrying my bag of wee in my gaping hospital gown. Should have accepted the trolley ride. I get to stand chatting with my two consultants while all three of us try to pretend there isn’t a plastic bag full of urine RIGHT THERE in my hand. 

They can’t find the right tube for the job. They phone a few other hospitals, no luck. They look behind the tube press. There it is, fallen down the back. We can proceed. 

I get the drugs and drift off a bit, but not as much as I hoped. My arm is cold, my back is in bits from lying flat. I politely ask for some more drugs about an hour later. Everyone is very calm and chatting away about things I can’t hear. The music is good. Eventually it is all done. It’s been three hours. I guess the drugs did work, it didn’t feel that long. I have to wiggle from the hard bed onto a softer trolley, then wiggle back on to a different hard bed in the Nuclear Medicine place. A ridiculously ordinary creamy metal box sits over me. No flashing lights, no lenses or apertures or screens, nothing at all to suggest any form of technology at all. Just a creamy box with chips and scratches on it. It moves slowly over me, left and right and down the sides of me. It is almost as unlikely as Reiki therapy to be actually doing anything useful. But, similarly, it seems it does. Gamma rays apparently. Who knew.

Finally I am wheeled back to the ward. I start the tug-of-war with the nurse about when can I eat, when can I get up, when can I have the catheter out. She is erring on the side of caution, I am erring on the side of I’M STARVING AND I WANT TO PEE LIKE A NORMAL HUMAN BEING.  
As has been proven so many times in the past, nurses always win. I did do the shnake and ask the consultant about the catheter while the nurse was in the room, so she was forced to hear his instruction to remove it about ten hours earlier than she wanted to. Hee hee.

I have the ever-wonderful post-fast tea and toast and feel fantastic.

She gets me a dinner later, way outside of normal hospital dining times (7pm? sure who’d be hungry at 7pm?). I horse into it (possibly an indelicate choice of verb, since it was a “beef” lasagne). My meat-free-ness will have to get over itself. I supplement it with a salad snuck down from the staff canteen by my trusty companion, and top it up with some fruit compote and a Mint Crisp. The meal of kings.

A good sleep this time, with no pre-dawn molestation. Have to start drinking contrast for the CT at 06:25 but that feels like a lie-in.  They have put about 300ml of orange cordial into the litre of contrast so my teeth are pinging from the sugar, but hey, it’s not Klean-Prep. 

With unprecedented efficiency the CT is done and all by 9:15. I walk back all by myself from xray, a little act of defiance that cheers me up no end. 

And then we wait. 

Mr Radiologist arrives in a very cheery red tie. He says the scan showed no change since the last one five weeks ago. No better, no worse. In the scheme of things, this is excellent news. So FOXFIRE is go. Or Selective Internal Radiation Therapy, to give it its much more prosaic post-marketing generic name. They are going to do one lobe at a time, so that I don’t get liver failure. How nice. So back in three weeks to have Yttrium-90 microbeads inserted into my hepatic artery, and six weeks after that to have another dose. I’ll be radioactive for a few days afterwards - they even use a Geiger counter to check when I’m safe to touch. Cool.
They have no idea if it will work or not, but hopefully the delightful smell of fried liver tumours will be wafting around me and all will be hunky dory by June. 

That’s grand so! Easy peasy.



P.S. I found the other passports. 


P.P.S The prayers, secular and otherwise, and the pennies in fountains, and punch-bags being punched, and the positive thoughts, and the notes being burned in temples, and all the other good will - it's all working chaps. Keep it up, if you don't mind. Ta.

Friday, 20 March 2015

The Hardest Thing in the World

The last few months have been difficult. I have been trying so hard to achieve my goal, and yet it seems that for every step forward there are two steps back. I never knew it would be this hard. 

To apply for two bleedin’ passports!

If I die in the next few weeks, my cause of death will be Extreme Frustration secondary to Acute Passport Application Syndrome. 

So I got the forms. Then I filled them in in blue pen. WRONG. Black pen.

Fine. New forms. Black pen.

I search my photos for one of the baby from when she used to sit still for longer than five seconds. And then find one with her eyes open, her mouth closed and looking at the camera. 
I try to get the four year old to pose with his eyes open and his mouth closed. I make the mistake of giving him these instructions. I end up with many many photos of him with his eyes closed and his mouth open.  
I use epassportphoto.com to get the photos in the official dimensions and send them off for printing. They come back 10 days later. They are not in the official dimensions. I send them off again. The photo service that usually takes 2 days is on an unprecedented go-slow. The revised photos return 18 days later. Still wrong. 
Four year old goes to chemist to get proper photo taken. Baby’s ones will have to do.

We all troop into the garda station after a day in town. I have failed to bring the birth cert and parents’ IDs. We get the boy’s one signed but will have to return with the baby. 

I get my friendly GP to fill the witness bit. Made an embarrassing and potentially Medical Council-inciting mistake with this bit before, so am very careful about it. 

I now have a special folder with all the necessary forms, photos and passports in it. I am on top of this.

Set off with baby to finally get this thing done. Turn back because I have forgotten the birth cert again. 
Go to different garda station. It’s closed. So this is what all the headlines are about. 
Go back to the first place. Carry baby and folder and bag. Sit patiently while a man finds out when his driving ban is due to finish. (Requiring a copper to count six months for you is a bad sign I would think). I am cool and calm because now I know I have everything I need. 

I don’t. The parents’ passports are not in the special folder. And two of the boy’s photos are missing. Nice female guard offers to hold baby while I go search the car. Baby freaks out. I lug baby back to the car. No sign of anything there.  Lug baby back to nice female guard. She signs the form and the photos and is warm and kind. Thank you nice female guard.

So where the f&^* are the other two passports? Has some terrorist nicked them and is going to use our identities to take over the world? 

I couldn’t care less. 

I just really really REALLY do not want to have to apply for two more passports.

Monday, 16 March 2015

Emmm

I think maybe I’ve run out of things to say. 
Or, at least, I cannot corral my thoughts into any kind of order. 

I am waiting for the next step - 
More chemo? 
Radiation? 
Surgery? 
Pretend like it never happened and go back to real life?

It is beyond odd to have so little control over what happens next. 
The novelty has well and truly worn off now.

Thursday, 5 March 2015

Homer as a Role Model - That Can’t Be Good

I’m beginning to think there’s something wrong with me.

I’m not sick enough to be this sick. 

I don’t look unwell. I don’t feel unwell, except when the chemo side effects kick in.

I’m not afraid of dying. I’m sad that I might, and I’m sad for those who would be left behind, but the thought of dying doesn’t keep me awake at night. In fact, last night’s dreams were mostly about a large cooked breakfast with all sorts of pig products glistening in a sizzling pan. Yum.

Either I am still in total denial, or I have progressed as quickly as Homer through Kubler Ross’s stages of grief. 

There really is something wrong with me. 

Monday, 2 March 2015

Hosp-it-hols*

I got a week off from chemo, and it feels like getting sent home from school because the boiler’s broken. 
I only have one or two chemos to go (this round) but it is becoming a real struggle. Most of last week I had pain in my mouth like nothing I’ve ever experienced before. Like I was swallowing hot lava every five minutes. Like I was using caustic soda as mouthwash. Mucositis they call it. Very bloody sore.
And yet, suddenly, it improved. I went from gingerly sipping squash soup to downing a tasty early bird menu followed by a lovely pint in the Mutton Lane.

It’s like when you have a cold, or manflu, and you think “will I ever feel well again?”. And then, next thing, you do. And it is so hard to remember how bad you felt. Until the next time you get sick, and then you think you feel so bad you’d rather be dead. 

Things change all the time.  They (nearly) always get better.


*Credit: AWF