It’s the last post of the year. Of this very difficult year….. I’m kinda feeling the pressure here to write a balanced, thoughtful and heartfelt piece.
I’ve been thinking about it, mostly in the shower. It’s proving tricky…..
I have no idea what to write about. The Earth Mother credentials that I’ve been patiently waiting for have still not materialised. Seriously, how long does a girl have to wait to receive some wisdom from this experience? I mean really!
So, do you know what I keep coming back to?
A year ago my life looked a little different. That’s what I’ve got. A year ago, my life was different. Not hugely profound, I’m afraid.
At the end of 2013, I was truly excited about the year ahead; comfortable (at last!) in my own skin, happy about how I’d conducted myself in trying times and pleased with my reflection. I felt (and please don’t laugh) grown up.
I’m not going to lie, I’ve had a few Christmas melt downs on the subject. I feel duped, the rug was well and truly pulled from beneath my, for once, firmly placed feet. So there has been a lot of sobbing and cursing and deciding life hasn’t been very fair this year.
A. points out; that no matter how I was feeling or looking a year ago, the truth is, I had cancer and I just didn’t know it yet.
So while, at the end of 2014, everything else maybe up in the air, at least I am cancer free. That is the barebones of it.
I can pat my legs and wiggle my toes (even though I can’t feel four of them) and thank goodness I caught it.
And I think that is where I am at. I am thankful I am cancer free, thankful that I am done with Chemo and Radiotherapy. I am anxious what hormone therapy and gene testing will bring. Anxious that it could all come back.
I hope 2015 is less dramatic. I hope it brings more hair, time to reflect and the wisdom I seek. I hope the same for all of you, unless you are happy with the amount of hair you have.
Perhaps all I learnt from this year, is not to put so much pressure on a clock ticking round.
Robert Frost wrote; how we should always choose the road less travelled, for it will make all the difference. I’m not so sure these days, if we get much say in exactly the path we get to tread. Whether 2015 finds us with solid concrete or shale underfoot; whether the pathway is well maintained and clearly signposted or we find ourselves on a detour of the bumpy variety -
I wish for us all a flash light, a knapsack of tasty supplies, some good hands to hold a long the way (preferably one who has GPS on their phone or a map), and the knowledge that in a year it will all be different.
I guess this popped into my head because of the time of year but you know how in the film Love Actually, Hugh Grant decrees that love actually, is all around?
Well, it seems to me that cancer actually, is all around.
I remember writing ages ago that 1 in 3 people would get cancer but even as I was writing it I wasn’t sure I believed it. I doubt a lot of people reading it believed it either.
When I was newly diagnosed and news spread, my dad reported that a family friend seemed particularly sad and annoyed that I had it too (they had been diagnosed not long before). I didn’t really understand why that might be, I think I do now.
Someone I know and like very much, has cancer. I’m pretty pissed about it. This is the first person I’ve known, since getting cancer, to be diagnosed with it too. I think I’m mostly pissed because I thought if I had to go through it, everyone in my life would somehow be protected. I guess 1 in 3 trumps silly dreams.
You know how Groucho Marx said he wouldn’t want to be part of a club that would have him as a member? Like the motherless ducking club, the C-club is the club you want to be the only member of. But 1 in 3 means I can’t close membership.
Cancer is on the rise, people are getting it younger and younger, no-one seems to know exactly what’s causing it. I could give you a list a mile long of things it might be. Most of them seem to stem from our “developed world” lifestyles. If you’re wondering, you do feel guilty about that.
This time of year; we drink a bit more, we eat a bit more, maybe we smoke a bit more. We are rushing about and perhaps neglecting any niggling health issues. I’m asking you, because I haven’t in a while, to check yourselves over. Go to the doctor if you’re worried and perhaps curb the holiday spirit(s) a little. Remind your friends and loved ones to do the same. I’m asking you to give yourself and those around you, the best chance of being the 2 and not the 1.
I’m asking you to do this because life is not like it is in the comic books. The radiation they are hitting me with at the moment, doesn’t change me into a superhero, turns out it only makes me tired and burnt. I can’t shield people or protect them from cancer. So all I can do is ask, because I know more than 2 other people, and you know more than 2 other people.
While I spent the summer complaining how uncomfortable and resentful I was, going through Chemo in the hotter months. I’m glad I am not just starting to lose my hair now, it sure is chilly on the ol’ noggin these days… Come to think of it, I’m pretty sure, whichever season I started chemo, I’d find reason to grumble about it. Chemo is just a very grumbly time.
So the leaves are falling, the fog is rolling and the temperature is plummeting and a mini renaissance has taken hold of my body. While it may not be as beautiful as the first crocuses of spring, the velvety fuzz covering my head is as welcome a sight. I wake up each day to new growth. It’s a very funny experience growing your hair from scratch, I will it longer as I brush my teeth each morning. Don’t tell anyone but I’ve started to shampoo and condition it, a bit of a conceit as it’s barely an a mm long. I want it to know it’s welcome and greet it with love. I shall never take it for granted again. I sport it as proudly as Rapunzel must have.
I’m finding it oddly ironic however, that in amongst this re-birth of Polly, I’m spending more time than ever at the hospital. Every weekday morning at a stupidly earlier hour, A. and I drag our weary bones to the Radiography / Oncology department where I am stripped, prodded and zapped with lasers. I imagine it is somewhat like an alien abduction feels like, just prior to the anal probe….. Bright lights, cold hands and strange crackling machines. It certainly feels alien at 8am on a weekday morning. Not that it would be ‘par for the course’ on a weekend, you understand.
What with all the stripping and all the strange hands on my breasts. It feels a bit like being newly diagnosed again and as I’m barely polite before 9am, it’s a job in itself not to slap these hands away. Being physically restrained helps, my arms are held in a position above my head by a device, I’m inaccurately going to describe as hand stirrups.
3 pinpoint tattoos are meant to guide the radiographers to the exact areas they need to zap, though I do seem to end up with a lot of red pen on me anyway. 15 minutes later I’m back on the streets, slightly bleary and destined to spend the rest of the day rubbing fridge cold Aloe Vera gel onto my skin in an effort to dissuade laser burn. A. rather evilly finds my cold gel dance unproportionately amusing.
We’re certainly living the dream at the moment.
People have been asking me since I began treatments last week if I’ve noticed the fatigue but I worked a 61 hour week last week. Between that and the early morning appointments, I can’t really tell. Roll on the 23rd of December I say, when I’ll be treatment free. Just in time for Christmas. Which is probably why I’m so ridiculously excited by the holiday season this year. Buying an advent calendar for the first to in years. There just seems so much to celebrate!
So should you see a fuzzy headed women, skipping about town, decking the halls, mulling some wine and indulging in a mince pie or two. Please don’t begrudge her the christmas album she’s playing on repeat. It could be me counting down the days until this disease and it’s treatment are behind me. Spare a thought for A. too who is charged with trying to reign me in!
In my life I’ve been referred to as “that girl whose mum has cancer”, “that girl whose mum has terminal cancer”, “that girl whose mum died of cancer”, “that girl who has cancer”. Not only is that enough cancer, enough labels, but it’s also nothing actually about me. I guess that’s the problem with labels.
I’ve been getting called Badass, superhero, or Wonder Woman a lot lately. I tell you this so everyone will get with the program.
Actually, I find it a little embarrassing – it’s nice don’t get me wrong and I’d be lying if I said I hated it. Come one, who doesn’t like being called a Badass?
I wish I could feel more deserving of the title. I should embrace it. At the moment all I have to do is turn up and people think it’s pretty cool. It will probably be the only time in my life (since babyhood, when everything you do is amazing – to your parents at least), I’ll do so little for such a lovely return.
I get awkward about it. I guess I still only see the things I can’t do. I want to be praised for being good at my job, who wouldn’t? But I don’t want to be praised for just being there. It feels a little like cheating.
Saying that, I’ll miss it when it stops. There have been points this year when I wished I got a parade a week.
The trouble I have, is what happens when you start believing the label? When the label is what defines you? Who am I without cancer? I write a blog about it, so maybe I define myself and should stop complaining.
It’s not that the labels are inaccurate, my mum did die and I did get cancer. I am also I badass. At times I’ve become concerned that these elements are the only things that make me an interesting person and that’s worrying. Perhaps it is the only thing. Perhaps I’ve not needed to work very hard to be interesting – these external things are out there, I’ve put it out there. Worse, perhaps it’s not interesting, perhaps it very, very dull.
At the moment, I worry I’ve become a cancer bore. I talk about it a lot, I was same after mum died. Partly, it’s hoping the next person you tell can make it better, will know the secret to stop it hurting. Partly, it’s because it feels so all-encompassing you can’t believe people don’t just see it on your face. Saying that they probably can at the moment, hello no hair, so then I feel I should bring it up first. Partly, it’s a bit like seeing a unicorn – it’s so immense, surprising and some what unbelievable, you have to talk about it. Although I think seeing a unicorn would be more fun and sparkly.
You know what other label I miss? I feel awful about missing it, I’ve tried hard to convince myself that it doesn’t matter but it’s human nature and I’d best admit to it. I miss being labeled pretty. Isn’t that crappy? It’s been a sharp learning curve, realising that I actually should have liked how I looked, instead of looking at the flaws and longing to change. It’s probably been good for me to live away from that label. It’s certainly one of the hardest parts of all this. I wonder if it’s the same for men with cancer? Everyone likes being attractive.
Does it balance out the above if I admit I’d like to be labelled smart and kind too? Should I be worrying about labels at all? Especially as I’d label my self a feminist too.
I guess I’ve got to work on my labelling or throw away the Dymo.
The other label I’ve been worrying about lately is the one with my expiry date but that’s another blog post.
So this should be a practical guide to Chemo therapy but life has gotten in the way.
It’s now been 4 weeks since my last Chemo. Instead of spending Friday packing bags, hyping myself up, cracking open the high strength anti-nausea tablets, crying in a parking lot and then being pumped full of chemicals; this Friday saw me completing my first week back at work!
It feels momentous and oh so normal all at the same time. Last year I’d have laughed if you’d told me about the sense of accomplishment I’d achieved just by working a 5 day week.
There were a few weeks over the summer when I wondered how sensible it would be to return to work 3 weeks post chemo but this particular job, with this particular group of people? To see anyone else do it would have broken my heart and I’ve given up too much this year, professionally and personally to let it slide.
So, I’m not going to say it’s been easy. This week has been work, eat, bath, sleep, repeat. I basically pass out by 10pm. A’s been amazing fixing all meals (including pack lunches), tidying, washing etc. I’ve not been fighting it (much), with out his help and support I probably wouldn’t be back at work so soon. Doesn’t mean I don’t feel like a total tool for not pulling my weight.
I’ve wanted to start on my Thank You cards, reply to the lovely people who’ve been so kind over past 6 months but that is yet again on hold, phone a friend or even write a blog post.
I get frustrated with my achey body, my clumsy hands and feet, my reliance on others – especially at work, how long it takes to shower and dress, how slow I walk. Then I’ll catch a look at my self and get frustrated again. It normally takes A. reminding me that “Rome wasn’t built in a day” to cut my self a break.
I just to feel myself. NOW! If not sooner.
So this just a little Sunday update. I hope as the weeks go on my stamina will come back and I’ll resume some sort of work / life balance. I’m just chuffed I’ve got a work / life balance that’s out of whack. Makes a change from the rest / rest balance of previous months.
Thank you everyone who has sent love and best wishes.
ps my feet have swollen up for no good reason! What’s that about? Seriously, anyone know? It’ weird and sore….
I thought it was about time I wrote about Chemo. I wrote that sentence and then nothing happened because how do you write about Chemo?
On a side note; it has come to my attention that people (and by people, I mean cancer people) debate whether cancer and chemo should be given capital letters. Unless it’s beginning a sentence, the grammar police would probably say no but this isn’t what the debate hinges on. No sir, it’s whether one gives ones power away when one gives these words a capital! I enjoy this debate. I personally don’t understand it, but I enjoy it, it tickles me. To whom does the power go for one thing? I can’t type either word now without thinking about the debate and the power….
I’ve been moving around all summer, from Dad’s house to the flat and back. I spent the last few days unpacking, sorting, and finally putting away. It feels good to be in the same spot for a while. Trying to unpack my mind, examine the contents of those boxes? Well, it’s slightly more daunting.
I’ve been having an internal monologue about how I was going to tackle this subject, pretty much since before my first round of treatment. I believe I’ve remained mostly silent on the ‘nitty gritty’, not counting my spectacular hissy fit in July – which you can relive here.
Reading that post back is painful and a little bit funny. I was really incensed by Facebook posts. I can’t lie, I still hold mini grudges against people who use that medium to do nothing but complain, especially about illness. Jeez, at least get yourself a Blog!
I’m hoping that this time round I can be more measured….. I’m going to aim for measured at any rate. I’ve spent some time wondering if I should write about my ‘summer project’. Is it useful to? For me or anyone? Will it just come across as either a martyred showing of my scars or a brazen humble brag? The best answer I’ve come up with is probably. Probably it will be all of the above.
In our family we have a short hand, When people seem to be doing a nice thing but are actually just tooting their own horn, someone will mutter “speech by Toad”. This comes from the end of Wind in the Willows; before his dressing down by Badger, Toad’s Thank You Party consists mostly of speeches, songs and poems about his daring deeds and heroic actions, mostly falsified.
In a bid to fence in my ‘toading’, I thought I’d at least try to separate my posts out – a practical guide and a more personal account. Future me and others can then choose for themselves.
As I seem to have successfully avoided writing much at all about Chemo, in my first Chemo Titled post. I shall leave you with 5 random facts on the subject. A warm up if you will.
1) The most painful place I have thus far had an injection is my bottom. I know, I couldn’t believe it! It’s a well padded specimen and I was under the false belief that this would ‘cushion’ the sensation.
2) I really should have bought shares in Watermelon, Chicken Stock, Elderflower Cordial, and Lemon Barley Water. Whether I will ever touch them again remains to be seen.
3) I really can be bribed with food. Dad would actually put a slice of cake at the bottom of the garden in a bid to coax me down. I felt like some feral creature scurrying out to retrieve it. I am 95% sure this was A’s idea because, in the nicest possible way, Dad is Good Cop and A is Bad Cop. When it comes to Chemo anyway.
4) The final eye lash count on my left eye is 16, 15 on the top and 1 on the bottom.
You know that feeling, at the start of a big new project? Or a tedious course you have to get through? or the beginning of a long separation?
Of course you do, everybody knows that feeling, everybody’s been there. You may have a person in your life, I had my mother, who always finishes discussions on such subjects with the words “in a year it will be different”. If this person is truly wise, as my mother was, they will not commit to better, just…. different.
I’m writing this from bed, I’ve switched off Radio 4 and I’ve just been staring out the window. You get to do that with Chemo, just stare off for hours if you like, no ones going to judge. I’ve been staring at the bluest sky, contrasting against the reddest apples in next doors garden. There’s a sunny golden cast to everything and the birds are going nuts. It’s so freaking autumnal, I could burst. Just to add to the sensory overload, Dad has moved (and I’m so excited to use this word) a bushel, indeed a bushel, of quinces in a basket into my room. They smell amazing. I kid you not, I am in full Martha Stewart Living meltdown.
I have been remembering, that this time last year, I had a month of these days. Perfect fall days. Perfect days for running on trails, for rowing, for walking with your Dad, for reading, knitting, quilting, for starting a script. For fixing yourself. For feeling happier than you feel you have a right to and being grateful for that. Grateful and happy and different. New.
I became obsessed with gold glitter, I couldn’t think of anything that signified happiness more. I had problems finding a cohesive way of incorporating gold glitter into my everyday world. I regret not trying harder. Anyway.
So, this year it’s been different. It’s been a week, almost to the minute, that my last lot of chemo drugs started drip, drip, dripping their way down my PICC and into my system. With every passing day I edge further from Chemo patient to my new “in a year”. It’s kinda freaking me out.
As I recoup from Chemo, this final time, my mind is most often drawn to my now (hopefully) incinerated PICC line. To say I was excited for that to be removed is to have no conception on the word excited. My PICC line, more than anything felt like a tether to the disease and to the whole process. You can’t hide it easily, it needs cleaning, it actually tugs on you, when move in a way it doesn’t approve of. Washing, which is already a bit of a chore when you’re not at your best, has this whole new dimension of tedium added.
I wanted it out. I thought I’d have to wait weeks but Mr Oncologist just added it to my notes and boom, as soon as the last drip of Chemo had gone in, out it could come.
Putting the darn thing in was a painful palaver. To lie, arms out outstretched, surrounded by wires and my vision obscured was eerily reminiscent of the final scenes of Dead Man Walking. As it took place the day before my first Chemo, to my melodramatic mind, it did feet like a death sentence.
Now, so many months later it was coming out, with no more fuss than if it was a magicians scarves being pulled from his sleeve. There I was, sitting in the chemo room, no ceremony, no certificate, there wasn’t even any blood.
And all I can think while I replay the memory is, you can’t put the toothpaste back in the tube. These monumental things happen in a blink of an eye and the only thing we can ever be sure of is; next year will be different, next year always is.
In the interest of full disclosure,I’ve been typing today with black leather gloves on. My hands have gone a little gnarled and I’m experimenting to see if this is comforting. I look like a very eccentric serial killer.
One more mountain, then a smooth path and no more climbing – for a while at least.
I can’t really believe it. Such a long time coming but not really anytime at all. One third of a year. If I was still at school, I’d have an interesting “what I did this summer” essay. I watched the weather change through windows, from my bed. Now, just as the season begins to change it will be over.
It feels unreal, it has always felt unreal. Half a year that will change you fundamentally. Actually, the change happens as soon as you find the lump, the next six months are treading water.
We’re not done yet. I get sometime off then there’s Radiotherapy and Hormone Therapy and possibly Genetic testing and more operations and, and, and. I’m beginning to realise I’ll never be able to put this in a box, that’s the thing about Cancer it will always be there, hovering.
That’s another post for another time. No more Chemo is worth celebrating. No more PICC line is worth celebrating too.
Is it an accomplishment? I don’t know. There has been a moment, *cough* several moments, after each blasting when I’ve sworn I’d not do it again. I was done. I was going to quit. I made my peace with being a quitter, I composed posts called ‘I’m a quitter and I don’t care’. Getting to the end? I guess it makes me feel unstoppable. I’m lucky, I know just how weak and how strong I am. That’s powerful information to hold. I’m one tough cookie.
But it’s not just me, Dad and A. have one last Chemo too. It has taken this triangle of love to get me through, sometimes kicking and screaming. These two wonderful humans have, will always have, my highest admiration and humble thanks. I do not think I have the words to do my heroes justice; I’ve never had to be strong when I’ve not wanted to be, my good days have been celebrated, I’ve been protected on my not so good days, tears have been wiped, hugs and kisses free flowing and all my food whims answered. They are the toughest of cookies. If I wasn’t so selfish, I’d suggest they should be cloned and given out on the NHS but they are MINE and I LOVE them deeply. How lucky am I?
There’s one last thing I’d like to say. A HUGE THANK YOU to my family and friends, near and far. I will never again mock the expression “it takes a village” – it really, really does. Every blog post you’ve read, every Facebook “like” or comment, every phone call, text, email, card, letter, gift and visit; has made me feel less isolated (and Cancer can feel very isolating), less of a sick freak. I may not of managed to see everyone, taken you up on your kind offers of help or company but just the fact you offered, touched my heart and made me feel less alone. I’ll pay it forward I promise you.
Next year, lets all meet up and have a massive party.