Pardon the shades of AA. Sometimes I feel like I'm addicted to talking about it. Sometimes I feel like I must be boring you.
You'd think I'd be over it by now, wouldn't you?
It's hard for people who haven't been through it to understand. Chemo isn't one of those things that stops, and you instantly get over it. I know you're all keen for me to feel better. It must be hard sometimes for you to know what to say to me in this weird in-between period, when I'm through the worst of the treatment but not quite myself yet.
Let me help you out.
In answer to your questions:
No, my hair has not started to grow back yet. I've been as bald as a badger for weeks while people have asked me this. In this last week I've finally (FINALLY) started to develop what they call 'peach fuzz'- a soft layer of down all over my skull which is the first sign of the follicles recovering.
Surprisingly, the fuzz makes a noticeable difference in terms of insulation. My head gets less cold. I can sleep without a beanie.
But I won't need a brush or comb any time soon.
No, Ferdinand has not been flushed down the drain yet. My stomach still randomly rejects various foods, usually after the event (thanks, you smelly old fish).
The pepperoni pizza, for example, seemed like a good idea at the time, and hallelujah, I could taste everything on it! But half an hour later Ferdi was moaning and groaning about hot chilli and inconsiderate aquarium owners. Similarly, chocolate ginger looked attractive as a way to reintroduce my favourite folly into my diet, until I realised that it had ushered that ghastly metallic taste back into my mouth. (WTF is that about?)
So I am still going gently, gently with food and drink. I can enjoy a Tia Maria and milk, for example, because of the tummy-soothing milk, but I wouldn't dare pour a G & T into Ferdi's tank. I'm sure there would be an uprising.
(Try not to picture that.)
No, I still can't feel the ends of my fingers and the soles of my feet. Dr Google paints an unattractive picture of the waiting time to be rid of that inconvenience. I can expect to be free of my peripheral neuropathy in something between three months and never.
Is it getting better? Well, some days I think so. And other days- well, let's take yesterday, when I picked up the pot of boiling water that we use for immersing the turkeys before plucking them, and promptly spilled a big slosh of it down my leg. My hands just aren't reliable when I can't feel my fingertips.
(Thank heavens for aloe vera. I don't even have a mark on my leg today, let alone any pain.)
And then I was sewing up a tear in the Bear's shorts (don't ask), and I dropped the needle, and do you think I could pick it up? No way in hell.
So let's just say the frustrations are continuing on that front.
Yes, I still have chemo brain. If anything, I'm noticing it more.
Certain things seem particularly good at slipping out the sides of my memory. Several times now, I've been talking to a close friend and have realised I can't remember their name. (That's deeply disturbing.) Phone messages? No idea. Did someone call? Multi-tasking is a thing of the past, because I just forget I started the other job.
That's hard on someone who's always had a memory like the proverbial pachyderm.
Yes, I'm still painting my nails. And I'm bored to death with it, thank you, so no, I'm not doing it because I've realised how empty my life was before I spent an hour every weekend slapping colour on my fingertips in a totally amateur way and then worrying about how soon I'd crack it all off by actually doing something.
My kingdom for a tame manicurist. (MEGAN!!!! Come here!!!)
It takes up to 5 months for the whole nail to grow out from the bed, and so that's how long I have to go on painting the damned things. My bare nails are a total fright, so hiding them has some merits. They're still red at the tips from the taxotere, and they're flaking and breaking even with the polish on- but (thank heavens) they're not lifting from the bed, and that's the way I intend things to stay.
No, I am not yet up for a full-on social life. And it's not just because the Grand Pianos of Radiotherapy have finally descended onto my back (though they have). I never stopped being tired before the rads started, so I'm not quite sure which treatment to blame for this one. I have good days- occasionally- but, more often, I have day after day when I have trouble dragging myself off the mat.
This is what my day feels like, every day.
Wake up unable to open eyes.
Bear brings me a cup of green tea (no, I still can't do coffee- waaaah!). Still can't open eyes, let alone sit up. Let tea get half-cold.
Feel ungrateful. Finally drag myself to sitting position. Sip tea, slowly, attempting to prise eyelids open.
Put cup down. Think about lying down again and going back to sleep.
Time check. Where did that hour and a half go? Realise that if I don't get up Right Now, I'll run out of time to fit in everything I have to do before leaving for rads.
Drag self up. Turn on Wii Fit. Flog self to wakefulness for 40 minutes or so. Remember why I never owned a hula hoop. Crash virtual bike into sea. Remonstrate with Bear for laughing hysterically at me.
Force down light breakfast. Realise I'm bored with Burgen raisin toast but am too buggered to think of anything else. Place remainder of toast into black furry garbage disposal unit. Wipe slobber off knee.
Fall into shower. Wash randomly, trying to remember to use Moo Goo milk wash on the nuked bits. Stand under shower massaging swollen underarm in a trance whilst hoping that's not full-on lymphoedema starting. Rinse thoroughly for fear of retribution by rads staff.
Look for cortisone patches. (Therein lies a tale too long for this short history.)
Get dressed. Get made up. Put on beautiful wig that suits me, but which will feel like a steel band around my forehead within about two hours. Curse my big head. (Shut up.)
Fall into car to go to rads.
And so on. Are you seeing a theme? The theme is 'fatigue'; absence of spoons, if you liked that analogy. I Do Not Have The Energy to socialise. I'm flat out just doing the stuff I have to do.
If I'm foolish enough to tell you that I'll drop in or attend some event, don't believe me.
About those cortisone patches.
The radiotherapy is still treating my skin well, but last week I started to develop an itchy rash. (Just my skin cells complaining about torture by fire, apparently.)
|Pretty remarkable after four weeks of rads.|
The red bits are the rash.
The rads nurse had a look and gave me some stick-on patches, which can apply slow-release cortisone for up to a week, so that I wouldn't scratch and break the skin. (The last thing I need is a burns infection.)
Well, I don't know who thought this one up, but see if you can spot the obvious mistake here. Rule One of radiotherapy is moisturise, moisturise, moisturise. And cortisone patches refuse to stick to skin that's had anything at all applied to it. You have to wait till all lotions have been absorbed completely before you can use them.
So, given that I'm moisturising at least three times a day, there are long periods when those reusable sticky patches have to be placed, sticky side up, on a flat surface for some considerable time.
Our house gets very cold in winter. There's no insulation in the roof, so all the warm air from our combustion heater goes straight to god instead of circulating. Right now the only cosy spot to sleep is on a mattress on the lounge room floor, right in front of the heater, so that's where we are. And that's where I carefully laid out my two sticky patches while I put on my night-time lotions the other evening, on top of my discarded t-shirt.
Can you see where I'm heading.
An hour of tedious TV later, when I was convinced the moisturisers had all soaked in, I went to reapply the patches.
They were gone.
At first I blamed chemo brain. Obviously, I'd put them down somewhere else and forgotten. I searched every surface of the entire house, including the outside bathroom.
I turned the bedclothes upside down, trying not to disturb the sleeping Bear who'd given up on free-to-air TV (twenty four stations, nothing to watch) some half hour before, staggered over the mattress after stoking up the fire and crashed out beside me.
I woke the black furry toast-eater, who was curled up in his usual spot on the genuine leather lounge chair he regards as his 'throne' (poor deprived beast).
No, my patches were not stuck to his arse.
I gave up, mystified. Whacked on some cortisone ointment instead, which doesn't work anywhere near as well.
The fire was really quite hot that night. The Bear stirred, rolled over. Stuck his bare feet out from under the covers.
And there were my patches, stuck to the soles of his feet.
Never let it be said that radiotherapy has been without its moments of redeeming slapstick. I tried to control my giggles lest I woke the sleeping patch-thief, but several hysterical snorts issued forth regardless.
So... as I was saying...
...if you were holding your breath waiting for me to get over the chemotherapy, I'd advise you to stop it before you faint. It's not going to happen any time soon. The rads nurse says 12 months is a reasonable time to wait for some sort of normality to return after chemo.
(Excuse me while I punch something.)
Apparently, I look great. It's sort of reassuring to be told that, but at the same time it's fucking irritating. (Don't expect a chemo sufferer to be rational, either.) I mean, yes, I can look almost normal on the outside when I'm tarted up (if you don't count the fact that I'm suddenly a short-haired blonde), but it doesn't mean that I'm over it. I'm still not the picture of glowing health on the inside, and I won't be for ages.
That's not to say that everything's dreadful, of course. I can taste my food again, I can cook and eat and enjoy it as long as I stay within certain parameters, and that's wonderful. I don't spend whole days in bed moaning.
I've spent odd hours doing some things I used to do without thinking about being sick. Painting the wood of the treehouse, where this whole crazy story started. Bringing in firewood- two pieces at a time instead of an armful, but at least I'm helping.
So yes, I can see the light at the end of the tunnel more clearly. Mind you, I'm not quite sure what the scenery's like out there in Post-Treatment Land. And I still have the joys of Arimidex hormone therapy to traverse before I get there, remember. It ain't over till the fat lady in the throes of a second menopause sings.
But over it? No. I don't even know whether I'll ever be completely over it. And I certainly can't tell you, to answer yet another question asked by an innocent bystander, whether I'm cured.
I feel cured. I feel like the Freeloader has been ejected, and I'm just coping with the clean-up. But then, I never noticed he was there in the first place, so how the hell would I know?
And honestly, the cancer experience isn't something you ever get over, really. There's always that little voice in the back of your head, that little bit of paranoia about every lump and pain and wheeze.
Over it? No, I'm not over it. But I'm getting through it. And I'm a damn sight closer to the end of the tunnel than I was last October.