Life's Not Fair

After my assiduous chronological documentation of what was going to happen after my last chemo, typically enough, none of what I had predicted actually occurred.

I didn’t get the “strong stuff” (irinotecan, not poitin) because my bloods were too low, so I didn’t have the same sequence of horrible side effects. 

Instead, this time I got a brand new batch from the Vectibix. 

I never knew how much I loved Epidermal Growth Factor until I started inhibiting it. 

Come back my little EGFs, all is forgiven!

My skin is disintegrating. I have pustules on my face, chest, legs, jacksy, and most tearingly itchingly painfully on my scalp. I spend most of my day picking scabs off my head. You know when your mother tells you to stop scratching, but you really just can’t? I try sitting on my hands but it's a bit tricky to examine patients or write notes while doing that. I can only imagine what patients are thinking when they see me with boils on my face, scratching my noggin like a particularly unhygienic chimpanzee. 

Oh well. 

My fingers are becoming useless again, can’t tie buttons or laces without wincing and griping. 

I found the world’s greatest plasters though - they survive OCD levels of handwashing and actually helped the cuts to heal - unheard of!

In the spirit of feeling sorry for myself, I decided to have a look at the lives of some other women born in the same year as me. As I have mentioned before, I am ferociously nosy. I have convinced myself that accessing the data available to me through our patient database is all in the name of research, but it is actually just satisfying my endless curiosity. 

So it turns out that there are 35 women on our books the same age as me. Surely none of them have it as hard I do? I've got to be the unluckiest nearly-40-year-old out of all of them.

This is a random list of the things these women are going through.

Well-educated immigrant, husband and herself unemployable here as qualifications not recognised. Child abuse, ongoing abusive relationships. Alcoholism. Cot death. Sarcoidosis. Depression. Emotional abuse. HIV. Anxiety. Bereavement. BMI 45. Son with autism. Kidney surgery. Pathological terror of intimacy, possible undisclosed childhood abuse. BMI 55. Infertility. Children left behind in home country. Headscarf attracting verbal abuse on a daily basis. Physical abuse. Incontinence. Bruises, post-traumatic stress. Job loss. Ex-husband jailed for white-collar crime. Painkiller addiction. Post-operative infection. Bipolar affective disorder. Diabetes. Ulcerative colitis. Domestic violence. Fibromyalgia. Panic disorder. 

Yeah. So my life is hard at the moment. 

But I don't think I'm the only one.

P.S. General practice at the Deep End is good for one's sense of perspective ;-)

Patterns

Chemo number 4 today. I think I have the routine figured out by now. 


Day 1:
Wake early, or else too late. Either way, end up rushing around at 7:50 trying to make lunches, pack bags, put on the washing machine, remember to bring the little pouch for my drug pump. 
Drive around the hospital looking for a parking space. Nearly always find the same one, yet I persist in looking elsewhere first. 
Take my ticket at the admissions counter. They call me in quickly, smile warmly, remember my name, ask about the kids. 
Sigh to myself as I walk up the stairs. 
Get assigned to a chair or a bed. Please please please let it be a bed. 
Nurse arrives with her little tray with my name band and the needle to go into my port. 
Bloods go off to the lab. All decisions rest on the results. I could get sent home (yay!) but they'd make me come back again anyway (boo!)
I sit and wait. (I'm not sure if angels contemplate my fate.)


The toxic stuff arrives down from the pharmacy in a locked industrial grey briefcase, carried by a lady in full Breaking Bad protective gear. 
Then they connect it to my bloodstream. 
You'd have to wonder really who came up with this stuff. "Hey Professor, I've found this really toxic chemical! I know, let's pour it into really sick people and see what happens!"

I sit and listen to the beeping, the vacuuming, the TV3, the intimate details of other people's lives and bowel habits. 

I get four different drugs. Folinic acid (a vitamin-type thing so it feels like it might actually be good for me), irinotecan (shocking awful stuff that banjaxes your guts any way it chooses for about ten days), fluorouracil (kind of a benign old thing really. Wikipedia calls it a suicide inhibitor! Maybe someone should tell the suicidologists) and panitumimab (the skin-assaulter).

It all takes about seven hours, give or take a lifetime spent waiting for doctors or xrays or swab results if you make the fatal error of telling them that there's anything wrong with you. 

I go home with a little plastic bottle of fluorouracil attached to my port. I stick it in the pocket of my hoodie. 
[I have a chemo uniform now - vneck top to access port without too much undressing, hoodie to carry the bottle, comfy trousers (though I refuse to wear a tracksuit), slippers, earphones. Smiley face.]

I am high on 8mg dexamethasone. Don't mind your crystal meth, dexa meth is your only man. I bombard social media, seeking validation and a fight. 
I don't sleep, because now I've decided I can't sleep, so I'm hardly going to. I can't lie on my left side, and the bottle is not nearly as pleasant a thing to share a bed with as a newborn baby, so there aren't really any upsides. 


Day 2:
I haven't slept, but I'm not tired. I take another 4mg dexameth. Whoop!
My face goes very red at about 11am. 
I potter about doing all the stuff I usually do, with a dry mouth and a headache that is very similar to a hangover but just a bit less fun. My thumbs go weird. 
I start to feel a bit weary and maybe a bit cranky (though I am quite sure that my mood stays perfectly stable throughout the whole cycle. Others may beg to differ.)
I sleep better. 

Day 3:
Another 4mg of dex. Off we go again, cleaning, washing, emptying cupboards, vacuuming walls. 
I try to concentrate on complicated work stuff. I convince myself I am a whizz with the numbers. I spend an hour on spreadsheets. It makes me feel good. 
I go back to the hospital, back to the smiling faces in admissions, back up the stairs and join the others waiting in the corridor. 
Generally I am whisked in pretty quickly, the nurse pulls out the needle and disposes of the empty bottle in a special Toxic Waste bucket. 
I go to work. The 4mg is still doing it's thing. I chat away to the patients, open worm cans, dig a bit deeper than usual. Superdoc is in the house. 

Day 4:
I've slept better without the bottle, but the brain is still racing a bit. 
No more dex. Downer. 
I am more able, but less able. I am unencumbered by a constant flow of lethal chemicals, but unboosted by the steroids. Perhaps, maybe, the mood slips a bit. I may shout, but only when necessary. "DO NOT LICK THE BOWL LIKE A CAT". That kind of thing. 

Day 5:
Okay. Things are slipping a bit now all right. Fighting the right words is a hit-and-miss procedure. My mouth is constantly dry, my brain is constantly foggy. I feel a bit like I did at 7am after a Med Ball. Not ideal for going to work. I'll have to stop doing that. 

Day 6:
I'm awake and I'm functioning, but I could sleep standing up. I could crawl upstairs and into bed until Tuesday. In a parallel universe like. 

Day 7:
A bit more awake, a bit more functioning. Would still bite your hand off for forty winks though. 

Day 8:
At last I see the light, and it's like the fog has lifted. But the stomach cramps kick in. They do tend to keep you quite awake. And sharpen your wits at work. 

Day 9:
Guts still as predictable as the weather, but the brain is able for complicated tasks like third class maths. 

Day 10:
Sure this chemo thing is easy peasy. Temperature going up a bit though, and white cells probably going down. Try to avoid eating the food off the plates of the snotty germ-factories. Try not to breathe in during consultations. 

Day 11:
Aches and pains, fatigue, short temper. Totally normal Mummy symptoms. Grand.

Day 12:
Skin beginning to heal. Spots less like Vesuvius, more like Sugar Loaf. 

Day 13:
Wholesome family activities, uniform washing, lunchbox preparations. Suppressing dread.

Day 14/Day 1:
And repeat.




Disclaimer: There are some sneaky hidden stolen phrases in there. I couldn't be bothered referencing them properly. Prize of a digestive biscuit for those who can spot them. And apologies to the copyright police if they're around. 

Thinking Ahead

Some of you aren't going to like this. 

I'm going to talk about death. Not dying, just death, so that might make it a bit easier. 
But really, if you are Irish, or maybe just human, you won't like this kind of talk. At All. 

Because we all know that if you talk about a bad thing you'll make it happen. So not talking about death guarantees that it will never happen to anyone, ever. 

That's been working out well for the 30,000 Irish people per year who pop their clogs. 

So let's just say, hypothetically like, that maybe we might die all right, but like not for ages and ages and ages. 

And let's just say, just speculating like, that we might have an opinion about what would happen when we did die. Would we have a funeral? I guess that's inevitable. Would we care what that was like? Should it be up to the people left behind? In fairness, the one person you can guarantee won't be at your funeral is yourself, so why should it matter to you what goes on? 

I used to avoid funerals. I was so uncomfortable about knowing what to say, whose hand to shake, when to stand up and kneel down and say Amen (Ay-men? Ah-men?).

The first funeral I remember is my grandfather's, on a lovely sunny day in late summer. Everyone was so warm and kind and friendly. 
My grandmother was buried four months later, on a miserable December day. My birthday. I could see the handles of previous coffins jutting into the hole they had dug for her. 
I didn't know that she was being lowered into the hallowed ground of the Republican plot, that her proximity to the great patriots was a measure of the esteem in which her family was held. I just saw a load of people in black, carrying umbrellas and sniffing. I played with my new Sindy doll in the car while various theatrical types hugged my mother. 

A young man died when I was at school, and his friends sang at his funeral. I have never seen or heard grief so emotionally raw, so honest, so uninhibited. I saw them turn from boys to men that day. 

I have been at funerals where people are afraid to speak up because of years and layers and depths of half-truths and cover-ups. There are so many elephants in so many Irish rooms you wonder how anybody else fits in there. 

Wouldn't it be nice to think that, on a pretty big day in your life - well, death obviously - that people could meet up, say nice things about you, eat nice food, hear good music, cry as much or as little as they want, stay as long as they like. Sounds like a top quality party. 

But we usually put a bit of effort into planning parties like that. We arrange the seats, count out the napkins, buy back-up beer, eat all the Doritos while waiting for everyone to arrive. We wouldn't just hope that, say, our spouse will suddenly know how to do all this, particularly when they've just been stricken down with a fairly acute case of grief.

So I am suggesting that maybe this is something we should talk about in advance. 
Again, just on the very remote chance that we may actually cack it someday. 

You could fill this in.

Or, you could talk to someone close to you about what to do when you're dead. 


I know. 
I'm a crazy witch-person who is going to make us all die right now this minute by even mentioning such heresy.
Sorry lads.





Addendum: Here's something to watch. It's about dying well. I just thought you might like a bit of a video.