Chemotherapy

pollygoshchemo

In which I gingerly (ha) start to write my “Guide to Chemo”

So folks, with many a glitter cannon and a triumphant trumpet fanfare, I have tried to start to write (reasonable helpfully) about chemo.

Turns out I can only do it in small chunks, not sure how many it will turn in to, lets hope it’s more informative / fun to read than actual chemo.

ENJOY!

Chemo Disclaimer: If you are about to undertake Chemo perhaps have someone vet this blog post before you read it.

Actually, that’s Tip Number 1: Get yourself a buffer / learn to zone out!

Everyone has an opinion / war-wound / great Aunt Sue when it comes to Cancer and Chemo.

If one more person, who had never been through Chemo, told me “Ginger might help” I may have inflicted damage. Learn to tune people out, you are about to receive a lot of unsolicited advice. Most will not be helpful, some will be scary; the Kings and Queens of Yore had their food tasters, get yourself an advice taster. A trusted loved one to vet / veto information. Let them help you to decide if you need this particular titbit in your head right now. If a conversation has taken a turn towards scary-ville, don’t be afraid to cut people off (politely). I wish I’d been more brave about that in the beginning.

So perhaps don’t read this, at least not yet.

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Tip Number 2: Get yourself a sponsor.

We all need advice sometimes or the shoulder of someone who has been there. Sadly in this day and age you probably already know a few, a Chemo sponsor if you will; the right person is the one who, on receiving the news of your up coming treatment, will respond by giving you a hug and nothing more.

This is your guy, a warrior with all the scars and the world-weary eyes but someone who knows when to keep their mouth shut. They know you need to experience it yourself first, they know not to taint you with stories of their own battles. The amount of self control this individual will be exercising ought to be saluted, trust me.

Once you are through your first treatment and need to debrief with a comrade; this is the person you call, meet for tea or something stronger, strip off your shirts (metaphorically) and have at it with the battle-wound talk.

Tip Number 3: At some point along the path you or your body will not react in a ‘normal’ way. (This is what makes all the guidelines on Chemo so aggravatingly vague, like snowflakes, we are all unique. It’s the last thing you’ll feel like doing but try to relax and go with the very weird flow. If you are worried ring your Doctor, 9 times out of 10 they will tell you whatever it is is normal or “normal for you”.)

I’ve been trying to think if I’ve ever been more nervous/terrified than the morning of my first Chemo session. Having never jumped off a cliff, blinded folded – nope, nothing is coming to me. I think it officially the most twitchy I’ve ever been.

The day before I had to take steroids to prepare myself, I then spent the day in nervous anticipation of when I was going to start feeling all manic and jumpy, which is apparently what’s meant to happen, my Mum would clean the house at top speed while on steroids. Sadly for little flat and the ever neat A. this NEVER happened.

Turns out I’m part sloth so I was mostly just sleepy (which my Doctors found quite funny), my skin felt a bit buzzy too, if that makes sense. You know when you’re on a hot tube/subway/metro and then all of a sudden a blast of cool air hits you and whooshes round your skin? A bit like that crossed with ants running up and down your legs; which is my least favourite touch sensation. It was unsettling, is what it was.

Tip Number 4: Request a PICC Line.

I also had a line fitted the day before, I hated every moment with that darn thing in me. It was not a pleasant experience having it put in and it was a pain in the patoot in every possible way BUT I think it’s a necessary evil. I am grateful my Dad knew enough to request one for me. It makes things easier on Chemo days and protects your veins from a powerful chemical battering. Which is super important.

Perhaps have it put in a few days before the first Chemo so you can get used to it. I wanted to swim as much as I could prior to Chemo so the day before made sense but I did have to deal with an achey arm on top of everything else.

Top Number 5: Let yourself off the hook, you have enough going on.

After my first not very pleasant Chemo experience, I spent sometime beating myself up. Had I scared myself into a nasty experience by reading too much? Had I forgotten to be positive? Had I done or not done something, ANYTHING to make this whole thing harder on myself?

I’m going to tell you a secret that may keep you a little saner than me. Commit it to memory and when the dragons come try and remember to repeat it.

There are no winners or losers in Chemo. No matter what the books, experts or your neighbour Ned says; it is going to be what it is going to be and you know what? You are going to do your very best in a very crappy situation.

We can dance about this issue all we want but NOBODY has ever come out of Chemo saying “I quite enjoyed that, can I go again?”, this is no trip to the Spa. By submitting yourself to it you are already a Rock Star in my eyes.

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Hair Today……

I could have called this post a million other things but I had to go with a cliche because hair loss and Chemo seems to be the biggest cliche there is.

A few days ago, I went out for the night, mainly because I still have hair. I wanted to celebrate this fact and the fact that I was feeling like a human again. Going out because I still have hair, just another in a long list of things I never thought I’d be doing.

I wake up everyday and look at my pillow expecting the worst. It’s like the reverse of Christmas mornings of my childhood. I’m not really sure what I’m expecting. I think it may be like those cartoon characters, who when they run away, leave a slow waft of their hair behind them – is that Tom or the Coyote?

I remember Mum traumatising me, by calling me over and then pulling a chunk – and I do me chunk – of hair out of the back of her head. I’m not sure if she found it funny or was just fascinated, probably she was traumatised too. Perhaps it’s a mixture of all three.

I really am going to try hard to be all ‘bald is beautiful’ because there are so many role models out there. But here’s my new theory, you really need eyebrows to pull bald off. I think this is doubly so if you are dark of hair and brows.

Mind you my friends, the lovely and very yummy looking D-W sisters, are so blonde they don’t have brows. I’d never noticed until they brought it up. So hopefully I can take a leaf out of their books.

Here’s the rub, I think you can have no brows and lovely hair or no hair and lovely brows. Both at the same time? I think you may just look like you’re having Chemo.

Don’t get me started on eyelashes, what is a mascara lover meant to do with no lashes? Apparently brows and eyelashes may last a little longer than head hair. I rub coconut oil into them each night; in a bid to keep them happy and attached. i have no basis that this works, none at all. I’ve read nothing on any weird corner of The Net. I just think Coconut Oil cures all ills. I sometimes rub it into my hair as well.

What I wasn’t expecting is how odd my hair feels now, like it’s already a wig or it’s already separating from me. Actually, I’m not sure if this is me separating from it or it from me. It’s probably all in my head (boom boom).

Do you know what really disturbs me? The thought that all my hair will go, ALL my hair. Body, Head and Face. It makes me think of those crazy bald cats or when I used to wash my hamster (which sounds like a euphemism, but it’s not). Though on the plus side in these summer months I can skip about hair free, and I will not need to question why I feel the need to do so.

I have been rocking the Continental armpit look, you aren’t allowed to shave after lymph node removal and I didn’t want to be lope-sided. It certainly saves time and if it’s good enough for Julia Roberts and Madonna…..

I have started to collate an amazing collection of eBay wigs (I’ve gone for ones with big fringes – two birds, one stone) and vintage scarfs. Pa and A. are a little weary that I’ve got eBay wigs, especially the pink and blonde one. Just FYI, Dolly Parton told me (and about 500 others) just last night, that she always wears wigs. I love her a little be more now.

In fact as soon as I finish this I need to make a wig appointment at the hospital. This is life now.

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The Girl Who Lived Her Life in 2 Week Increments

I woke up happily at 5.30am today. Partly due to our lack of curtains (not as weird as it sounds, we live 6 floors up and aren’t overlooked, promise), and partly because A was getting up at 6.15am to commute for work. It feels churlish to laze in bed – though I totally did that yesterday.
I know others who do this daily but it’s new to me. I wrote a while back that I wasn’t sure how all  this was changing me. That I was discouraged by my lack of Earth Mother credentials. Well, I think mine is going to be a quiet revolution.

I have, without realising it become an advocate of ‘living in the moment’. This isn’t something I’ve actively sort out, it’s medical more than anything. I simply don’t know how I may feel after the next Chemo or even tomorrow, if we’re talking mentally – though tomorrow is Dolly Day so I guess I’m going to be JUST FINE!

I also crave outside. I used to be the girl who loved to be ‘In’, all my favoured activities were ‘In’. Frankly, I think I was a little on the lazy side. I preferred to read ‘In’, even on sunny days. Now it’s about ‘OUT’ – fresh air and sunshine because I can remember what being ‘stuck inside’ is like.

So why not make hay when the sunshines? It’s not that I rush from minute to minute always seeking out the next ’new experience’. It’s writing when I feel good, walking with Dad, seeing people I love, working on the allotment, even just knitting or cooking. It’s about enjoying what you’re doing, when you’re doing it; remembering you are lucky to be able to. Taking the time to just think “WOW, I feel good today.”

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Nora Ephron wrote an amazing article after her best friend died, about not saving things for best. I read that article, several similar articles, I’ve read books on the subject. I even lost my mother. I always thought “I should make the time to feel grateful, to enjoy this”. It’s just so darn easy to forget.

So forgive me if I become the voice in your head for the next few months, poking at you to stop and smell the Sweet Peas. To stop making mountains out of mole hills, to just fucking smile! For I am the women who wears mascara simply because she still has eyelashes!

So I am being a Pollyanna and people who sign and strop do frustrate me. I’m not going to apologise for that either. People are very lucky I don’t cup their face in my hands, kiss them beatifically on the forehead and whisper “Remember to Find the Time to Be Happy!” Though I guess I’d be finding the time behind prison bars; strangers don’t like to be touched.

I have been angry and you can read about it on little blog. I know from viewing figures that those are the posts people seem to like to read and that’s fine. Who really wants to listen to a privileged, non-working, youngish women wax lyrical about being Happy? What can I possibly know about your troubles?

Don’t worry, I’m sure we will all be back there at some point. Going bald will prove excellent fodder, I have no doubt. This disease is so changeable and the emotions that go with it are complex.

I have no idea if Chemo Round 2 will hit me the same. These ‘well days’ seem like a precious gift. I found out 4 months ago now, life changes in an instant. So live in the moment. Embrace the Pollyanna.

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This post is also for the future me, just as much as it is for you, the me when all this is over with (such a shiny far of beacon presently).  Just in case this feeling doesn’t stick around. I hope it does though. I hope I get to hang on to it because fuck me, if it doesn’t feel good.

The Flowers that punctuate this blog post are *some* of those giving to me in the past few months. Thank you to all those who brightened my darker days. xxx

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Marathons

I thought I’d better punctate this short post with calming photos. As I learnt recently in Chemo School  - no sadly I’m not joking (seriously, don’t ask, I am unable to be funny or even half way polite about it yet), visualisation is a handy technique, we were told to imagine a beach, So I’ve given you a beach. Enjoy.

Don’t get me wrong, I do think mindfulness is a useful tool. I would just reason, telling a roomful of soon-to-be Chemo patients to “imagine the wind in their hair” is not a terribly sensitive exercise. grumble grumble.

Anyway news over in these here woods is I start Chemo Round 1 on Wednesday – let the Marathon Commence! The hair is not going to stick around and due to the PICC line I need I will not be able to swim – it’s seriously a toss up as to which of the above statements receives most of my wrath at present.

I still can’t get my head around the whole – pump myself full of chemicals, feel shitty, when I feel perfectly OK now – thing.

Obviously, I do and I trust my Medical Team when they say that this is the best course of action. I’m just being petulant and teenager about it at the moment.

It’s just the unknown is scary and from what I understand of Chemo, Your Unknown is very different to someone else’s unknown. You just have to do the research, expect either nothing or everything (I’ve not figured it out yet) and do it.

So here’s another beautiful view to mediate on and here’s to the next 4 months.

Incidentally, if anyone watches Orange is the New Black – Season 1, Episode 1, pretty much how I’m feeling right now. Although, I’m pretty sure I’m innocent, though perhaps not Karmically speaking…..