Things are changing in my world. Not in the ghastly – cancer’s going to mug you and take your year – kinda way. That way knocks the wind out of you, leaves you on your ass while it skates by shouting “loser”. So I’m very grateful it’s not that kind.
Life is yelling “Forwards” at me, rallying the troops and charging off in the most unexpected directions. I’m married for crying out loud! I mean, what!? The other big change is in my career.
For pretty much all my working life I have been a stage manager. I have worked odd hours, lived behind a curtain and fashioned a life in the dark, in the backwards hours of the day. I love, love, loved (almost) every minute of it. It is where I’ve met the majority of my most beloved humans, including A (who once kissed me behind a set door, when a smoke machine was going off, *sign*). My work, for the longest time, has been all rolled up in my personality, my identity. If I wasn’t Polly, Stage Manager, I wasn’t at all sure who I was. I stage managed a performance on the day of my mother’s funeral – I wrote her eulogy during a dress rehearsal, between cues. I’m the girl who went back to work 3 weeks after finishing Chemo. I stage manage, there for I am.
Then cancer happened; surgery, chemicals, radiation happened and I can’t be Polly, stage manager, all the time anymore. My body, be it temporarily or permanently (juries out), can’t keep up with back to back shows. The crazy hours, the stress, it’s not helping me recover. But it’s more than that, I’ve realised that evenings and weekends not spent at work means seeing more of the people I love; that siren call of regular hours, my allotment, evenings with my A. It’s having a life and work, not just a life at work.
I want some thing else. Not better, but different.
Has discovering this been painful? Is it scary trying to figure out just what the hell I’m meant to be doing now? Was turning down a show, with pretty much my favourite people involved, my work family, like taking a bullet? You betcha. I feel like a turtle without a shell, all soft and unprotected.
I wake in the night wondering – What if I lose contact with all those wonderful, colourful folk I’ve met? What if there is nothing else on this earth I can do?
Then A. gently reminds me that my health is more important, living a long life is important and I’ll figure out a way a filling it up.
So I am now Polly, part-time stage manager, student of holistic massage, sometime blogger and kicker of cancer’s ass.
Anyway, I thought it was about time that little blog reflected these shifts; looking backwards all the time means I’m bumping into a lot of lamp posts.
I guess I could just say goodbye to little blog, leave it as a testament to my year or so of cancer but I’d miss writing. Plus why just write about the bad bits? So yeah, the tag line to this blog should read PollyGosh: A little blog, not always about cancer.
Thank you for reading along thus far, I understand that not everyone will continue. Little blog has been a handy dandy way of keeping you posted when I was unwell. I very much hope it never has to be that tool again. Please check in every now and again.
Oh and if anyone has any bright ideas for a career for me – answers on a postcard (she half jokes).
We had a little celebration. Actually that’s underselling it as we had a lot to celebrate! It was overwhelming, in the best way, to be surrounded by all the people adore the most. We gave speeches, I’d not managed until the day to read mine without crying but I just about got through it. Dad and A gave lovely speeches, I definitely blubbed through them. It was a lovely, lovely day and not one I’ll forget. Below is the speech I gave, it’s just one big thank you, which is why I wanted the party in the first place! It’s a thank you now, to everyone who has ever read this little blog.
Well, these speeches seemed like a good idea at the beginning of this week, I was pretty smug, truth be told, I thought my love of writing, would make this easy. What I’ve been learning however, is that it’s actually very difficult to convey precisely what I want to, when faced with a room full of people I think the world of.
In many ways the message behind this speech is pretty simple, 10 seconds would suffice. It’s to say thank you. Thank you for coming today, thank you for helping us celebrate. But that’s too simple and I can’t let you all off the hook that easily….
This party started life as a bit of an idle daydream, enabled by Pinterest. I had to spend a great deal of time inside last summer, watching the world go by, not feeling as though I could participate. It became very important to throw a party so I could wear flowers in my hair (because I’d once again have hair) and so that I could see everyone I loved, in one room at one time. While I was ill, I was overwhelmed by just how many amazing people I had in my life – kind, generous and supportive people. It helped me count my considerable blessings to know I was so cared for. So this party became more than about flower crowns, it became about finding a way to tell all you lovely folk how grateful I have been for your support. So the first toast is to all of you and it is just a really big thank you. To everyone!
I’d also like to say a huge thank you to our families, for everything they do for us. Thank you for not freaking out when we rang you and told you we’d sneaked off and got married. It was to hardest secret for us to keep but because you have always been so supportive, we knew you’d be nothing but happy for us. I feel very lucky to have been born into the family I was and I feel very privilege to have joined the wonderful family I have.
I can’t let this moment pass without mentioning my mother. She was the one who taught me to count my blessings and what grace in the face of illness is all about. She told me not to marry until I was at least 30 and to marry a practical man. I didn’t always listened to my Mother but in this instance, I did. Hers is the face always missing from the party and the face I will always miss the most. Though I’m not too sure how cool she’d have been with an elopement…. but thank you Mama for marrying the best man you could, so I knew what to look for, for your fierce love and for all the advice, whether I listened or not.
There are two people in this room, who deserve so much more thanks than I would ever be able to extend here. And another of my blessings is they are now both legally obliged to LOVE ME, how lucky am I?! So I turn my attention to My father and to my A.
When you are in trouble there are no better hands to be holding yours, than those attached to these two humans.
The owner of the hand who has been holding mine the longest is an incredible human being. Words really do fail me when trying to express what I owe him and how grateful I am to have him. He is the kindest, calmest, smartest human I know and I really lucked out that I get to call him Pa. No matter what I have thrown at him, figuratively and (I’m sure as a teenager, literally) he has never dropped the ball. He has supported me, encouraged me and supplied me with a lot of cake. I have always known he was a super hero, but he really excelled himself last year, he was with me at every appointment, he listened to the anger and the fear, he took my grumpiness of the chin and made an impossible situation seem possible. When I was little he was the best guide a girl could have but I think I am most grateful that I get to know him as an adult, he’s the best friend a woman could have.
I always thought it would be impossible to find his equal, and here I have to count yet more blessings because I did.
While writing this speech, trying to come up with anecdotes, it became apparent that A and I are not conventionally romantic – one year we were only reminded that it was our anniversary when A’s mum, rang to ask if we were off somewhere nice for dinner – we were in Asda at the time, discussing cheese.
Neither one of us can remember the exact date we agreed to get married, suffice to say there was no big proposal. We decide together, one evening while Andy was chopping kale.
So far so not very Rom-Com.
No, our style of romance is a little different, it’s the work A puts into our allotment because it’s where we like to hang out together, it’s the fact that he’s my biggest cheerleader when I’m ready to throw in the towel, the thousands of nicknames he’s given me, the dances he does around the flat to make me smile, it’s the fact that he was the only one who could make me laugh during chemo, it was shaving my head and convincing me I was still lovely and it’s because he always remembered who I was and would be again, when all I could see was the sick, bald person in the mirror.
So no, we are not Rom-Com fans, we don’t fit that image. In truth, and here’s an another little known fact for you, A and I love incredibly bad blockbusters. The more implausible and poorly written the better. Which is why, so far this summer, we have watched people parched in a desert, shaken by earthquakes and chased by genetically modified dinosaurs. During one of these classic films, distracted from the razor sharp dialogue and nuanced plot, a question popped into my head – would I survive this situation? It was a question almost as quickly answered. Yes, because I’m a badass but also because the person who’d be standing next to me is awesome, he’s interested and interesting, he’s challenging, funny, gives the best hugs and most importantly in a blockbuster situation – he can do anything, he could even tame a velociraptor, I’m pretty sure. Together we are a fantastic team, he’s my best friend and when he is beside me, I am sure and I am certain, even when things go bump in the night
So Hollywood can keep it’s rom-coms and it’s blockbusters because Andy and I have faced our own monsters and natural disasters and we managed to make our own kind of romance out of that.
The thing that bugs me most about the movies, is that you get the happy ending but you never find out what happens next. So, I thought i’d finish with a verse from the poet and writer, who’s books lined my childhood walls;
There are no happy endings.
Endings are the saddest part,
So just give me a happy middle
And a very happy start.
A and I are home from an adventure jet-lagged and muzzy with lack of sleep but very, very Happy.
Last year I introduced little Blog on Facebook with the phrase “so this happened”, it felt important to announce this very happy news the same way. Put some demons to rest, so to speak.
A and I got married at the Office of The County Clerk, New York City, just over a week ago. We kept it a secret, had just one, very lovely witness and had just about the best day ever!
The bride wore Banana Republic, The Groom wore Levis.
After the ceremony we ate Lobster Rolls, Skate Salad and drank Prosecco. We had fun in a Photo Booth. We then moved on to Cocktails at the Mandarin Oriental, which has the best views and very welcome air-con!
The exclusive after party was held in Central Park where we ate Cupcakes.
We had a million photos taken.
It may not be conventional, but it was a perfect day, a perfect wedding for us.
I’m really scared. It’s not that easy to admit to, it seems absurd actually. I don’t mean to sound boastful but I can probably list the moments I was scared last year, there weren’t that many of them; telling dad and A, when the doctors thought I had a secondary tumour on my sternum, before my operation, and before each new treatment. I think I had a few “oh my god, life will never be the same again” worries but generally of the tsunami of emotions I had to make head space for, fear didn’t have a front row seat.
I guess that may be surprising but I had a purpose last year and a plan. When faced with a crisis, I find it easy to blur out the bigger picture and concentrate in the day-to-day; getting things done. So last year I got very practical, which is why I have a will, an end of life plan and detailed instructions for my funeral. I found it freeing to take control, organise the very worst case scenario. I don’t mean to toot my own horn but I think I dealt with last year’s crappy hand, as well as I could.
I keep thinking about trapped animals. How strangely calm they are as the net goes over or they spring the trap. It’s only a few seconds later they start to fight, to try to free themselves. Is it belated adrenaline? Is it a delayed reaction to unforeseen, incomprehensible danger? That fearful flapping, that’s where I am at the moment.
All my posts about life now, seem to be variations on a theme. I should group them all together under the banner headline “Trying to Get My Head Around Things”. It’s slow work.
After treatment ends you just want to remember what ‘normal’ felt like, so you work on that. You go to work and you can lose yourself in normal. If you are lucky over the weeks your body even starts to feel a bit more “you” again; you’re no longer reliant on pain killers to get you through, your hair starts growing back. You are happy and grateful and free from hospital appointments and needles. It’s a fine old time.
Then, if you are me, you get tired and a bit weepy. You think that actually perhaps you’d better rest, take stock, register the year that was. You ask experts, fellow cancer folks, friends and family; everyone thinks it’s an OK thing to do. So you stop but you feel weirdly guilty, like you’re slacking off.
You plan amazing things, fabulous trips and adventures. All the things you promised yourself you’d do when you were lying in bed last year and just watching the world spin without participating. You try to remember the letter you wrote to yourself, where you hoped you’d become a better human. You try to remember that this is a process, that despite what your inner puritan thinks, you need this time. You listen to the news and feel lucky and guilty that people all over the world are going through so much worse than you went through; that they are getting on with it, when you aren’t so much. You think you are a spoilt, developed-world brat; again you try to tell that inner puritan to be quiet.
Before you know what to make of it, you are on a magical island. The island of your happy childhood memories, an island so full of familiar and comforting smells, the island that healed you the last time you were broken; the place you wanted to be for the whole of last year. You are there, you made it and it’s overwhelming. Amid the quiet and the trees there’s nowhere to hide. You aren’t writing 12 hours a day and creating masterpieces, like you anticipated. You are staring at the most beautiful view, we are talking panoramic postcards in every direction, and you are scared.
You see, what this time off and my island is teaching me is that I’m a lot more scared than I would like to admit about this cancer coming back. I’m scared that I dodged the boomerang but it’s looping in a slow arch back. I’m scared because it happened to my mum. I scared because I don’t think I can be brave a second time around. It’s a paralysing fear.
I’m scared because every decision these days feels heavy, decisions echo down the years but what if you only have 2 years left or 5 or 10 and what if the decision you make is wrong. I’m scared that all that went down last year won’t matter, won’t change me. I’m scared I’ll waste what I could’ve learnt, fritter away the opportunity. It needs to mean something, I really need it to mean something.
It doesn’t seem to help, the old adage that ANYONE could be hit by a bus tomorrow, so we should all be living for the moment. It’s undoubtedly true but it doesn’t free me from my fear, it makes me scared of buses.
I want to live a full life, a life of interesting work, of friends and loved ones. I want to learn more, do more, be more. I want to be the very best version of me. It’s just I want it so badly I don’t want to mess it up.
So I’m scared and at the moment the only thing I feel I’ve learnt is that if I write about it, if I open those curtains and let the air in; it might not change anything, it might not dissolve the feelings but I can look at it more easily, face to face.
Disclaimer: If you are about to undertake Chemo perhaps have someone vet this blog post before you read it.
I think all these will carry the above disclaimer….
Chemo has a bad reputation. Sadly, unlike the girl you went to school with who just happened to develop quicker than everyone else, it’s deserved.
I’m finding it a little hard to gather my thoughts on the subject and be funny. So I’m writing some vignettes about my chemo time; just little stories to keep us all going, time has made them funnier but they might be strangely useful too.
I think I finally gave up around the point in the visualisation exercise where the whimsical, soft voiced woman asked me to “feel the wind in my hair”.
It was then that I decided I wanted to flunk out of Chemo School.
To be fair to both the Nurses running the class and myself, a series of unfortunate incidents meant I was caught entirely off guard when I found myself at the door of an airless and windowless room in the Oncology Department.
This for starters seemed strange to me; any building to do with Cancer, is always bright and airy. I’d go so far as to say that the bleaker the illness, the brighter and lighter, the space (in my limited experience). If windows are not forth coming, weirdly cheery wall stickers may be used but mostly cancer folks are guaranteed some windows.
I suspect it’s because no hospital or political party will ever get a kicking for spending resources on the Cancer Wing. I know this because if you read the UK Parties manifestos at the moment most, if not all, mention beating / leading / ruling or in some other way whooping Cancer’s Ass. Cancer and/or Dementia may win someone an election (or not).
So yes, Cancer is the Switzerland of diseases (except for Smoking induced Lung Cancer which causes much controversy – it is possibly the North Korea of cancers, but that’s another story).
The unfortunate incidents are boring really, serving only as a reminder, as to why you need to chase up appointments. It turned out, that someone thought I was a few appointments ahead of where I actually was, on the Chemo pathway. A bit like when that person told you what happened at the end of the nail-biting series you were two episodes shy of completing. Only possibly worse, though I don’t want to judge, people feel very strongly about Broadchurch.
It is understandable that occasionally these situations occur, especially when you consider the pressure everyone involved in our NHS is under. However, it is also not the funnest situation to be in. On my Cancer journey thus far, I’d give it a 4 – where 1 is finding out I had cancer and 10 is finishing treatment.
Anyway all of this is leading us very far away from Chemo School and meditation. Suffice to say, to my knowledge nobody puts Cancer in the Basement. I was slightly intrigued then, when I was ushered down the stairs, closely flanked by my beloved men. Though, I thought I was probably going to have another scan. Scans are kept in the basement.
The door swung open to reveal a room full of grey, shell-shocked types, instantly recognisable as the newly diagnosed. There were a few loved ones too but only one per person, my two was now making me feel, as close as I’ll ever come, to a famous type with an entourage.
We were late so we squished into the room still none the wiser as to why, exactly, we were there. It became apparent all too quickly, that this was Chemo School.
We would be ‘vaguely’ running over the ups and downs of Chemo; ‘vaguely’ because while I didn’t take a straw poll, I’m pretty sure my fellow students (both male and female) were not all Breast Cancer People.
Specifics were shied away from; too many Chemo types, too many possible side effects. The dreaded phrase “including but not limited to” was used. Be wary of this phrase. Used when there are SO many side effects. It is often quoted by a thoughtful looking medical professional, normally when you show them some bit of your anatomy that is dropping off / turning blue / not behaving like usual. “Hmm, yes that’s not unheard of” comes the response “we normally just give you the headlines but it’s not limited to those symptoms”.
As would become sadly usual in the coming months; bowel movements, vomit capacity and all number of bodily fluids were touched upon. The tone used to broach these subjects irked me. In much the same way as the phrase “spend a penny” or “had an accident” irks me (both of which were also used, if I recall correctly). It’s an apologetic tone; the chin goes down, the eyes lowered, awkward shuffling. These are medical people for crying out loud; if you can’t say shit or poo, can we at least use faeces? I’m pretty sure that, is at least, in medical dictionaries.
(side note: A friend once told me that a nurse told her, that medical professionals are now not allowed to use the phrase – when referring to injections – “a little prick coming” and that “a little scratch” has to be used instead, for fear of offending!)
It was at this point in proceedings the elderly gentleman next to me started shifting uncomfortably.
Poor chap, things were about to get worse; “libido” was up next. Nothing specific, same apologetic tone, same airbrushing over the details. It would have been frustrating, I’d imagine, for anyone seeking actual advice and here comes the kicker; At each stage of this interminable process we were told several times that “Questions were welcomed”.
This got me on a number of levels
1) The delicate and embarrassed handling of these slightly fruity topics did not make me feel I could pop up a hand and ask a question related to my bodily functions or sex. I was in a room full of strangers and embarrassment breeds embarrassment. Also MR 80, sitting next to me had cancer, he did not need to die of a heart attack.
2) I WAS FLANKED BY MY DAD AND MY BOYFRIEND.
Now, I’m a 35-year-old woman; old enough to have sat through a few risqué and unexpected movie sex-scenes, while sitting with a parental. I’m mature enough to handle it reasonably comfortably.
I’m also mature enough to admit there are times when (shush) I’ve wanted to be perceived as alluring and sexy. At this moment in time, I was just about coming to terms with the butchering of my body, the weight gain and the loss of hair that would follow but it hadn’t happened yet. I STILL wanted to be seen as sexy by my boyfriend. It was important to hang on to this for as long as possible.
So under no circumstances could anything have induced me to put up my hand and ask about ANY of these topics.
The nurses seemed disheartened that no one was asking questions. I am a people pleaser but still I couldn’t bring myself to ask anything. Imagine! I mean where do these people think we are? Some beautifully open Nordic Country, at ease with nudity? We’re British for crying out loud!
I feel I need to mention at this stage, that this is not an attack on the NHS, the Nurses or the standard of care I received. I still Heart the NHS, big cheer for the NHS.
I do have to question the validity of this particular aspect of the process. To be fair it was a pilot scheme that was clearly in its early stages.
Dad would also point out here that unfortunately, I did know an awful lot about cancer and its treatments before all this; those who don’t may find it useful. Though I’d say a look at the Macmillan website would be just as informative.
My argument with this pilot scheme can be summarised in the following bullet points:
*Warn people what the class is about, make it optional, suggest you don’t come with an entourage, so you can ask the unsexy questions you want to know the answer to.
*If you are going insist people come and pay the hugely inflated parking fees, make the classes useful and specific. Putting us in a mixed gender / mixed cancer groups is not going to encourage the type of free and frank dialogue wanted by those running the group.
* When dealing with a room full of awkward, sick people and forcing them to meditate. Do some research, listen to the CD you’re using and perhaps pick the one that doesn’t assume the listeners have hair. Especially if they lost it via treatment. It will piss them off and not aid relaxation.
*Offer them a biscuit and a cup of tea, it’s just polite.
Don’t worry the Oncology Department know how I feel. I (politely) wrote the above down on the feedback form. If they couldn’t make it out on that, they’d have had a second chance with the clipboard I was leaning on. I made quite the indentation.
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.
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.
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.
To spare my blushes, I’d like to think, that you haven’t really lived until you’ve found yourself bawling your eyes out in the Japanese Wing of the V&A. Goodness only knows what the other visitors thought. Perhaps that I was communing deeply with the pottery in front of me. Having strangers think that I am so wonderfully deep, that the sight of a beautiful pot can move me to tears is what soothes the humiliation of crying in public.
I love museums; love their dusky, musky smells, love the near silent revelry of those within. I find it amazing how quiet, a huge, booming building can be.
I love the V&A best of all. I love it especially on a week day. I love discovering some new wing or tiny artefact. The last time I visited (before the tears), I came across a carpet so precious that it could only be lit for 10 mins every hour! What was more remarkable, that there was people waiting to view it, a wait of 20 minutes.
I adore the V&A as a building, as a monument to love, ostensibly. I adore what it means to A. and I, the hours we’ve spent wandering its great halls. I like the gift shop, and the tea room and the amount of dust that dances its way across the beams of sunshine; from the windows that look out into the garden in the middle.
All of this and none of it was tickling my brain, that Tuesday, while I was idly contemplating the Japanese ceramics. I was feeling a deep joy to be back, when “blam!” the fear got me.
I didn’t see him sneaking in, he must have been tailing me all morning, following in the shadows, sniffing about where he’s not wanted. This particular fear is a peculiar one, he’s reasonably new to me.
You know that feeling when you are so happy you think your heart my burst or your head explode? This fear must be attracted to the pheromones that sort of joy creates and just at the point of bursting or explosion, he comes along with his big, icy hands and clamps them firmly upon you. All the time he’s whispering that you are so stupid to be happy or joyous and even though the sun is shining the storm clouds aren’t far behind; don’t you know something will happen soon to make it so you’ll never feel happy again? Not only will you never feel it again, you will be so robbed as to never even remember what happy felt like. Joy will be lost to you.
But remarkably what the fear was whispering, scary as it was, was not what I was crying about. What left me wailing in front of the pots (and tourists of many nationalities) that day was the sudden realisation that my reaction to feeling ‘dance a jig’ happy was to be scared of what was going to happen to ruin it. I wept that day because I was so sad, that my experiences, could leave me so, so fearful of joy. I cried so much I had to go and have a cup of tea in the William Morris tea room. Later, when I got to work, I cried all over again.
I’ve been absent from little blog for a while, not because I’ve spent the last few months weeping and wailing. I’ve been pretty tired, exhausted might be a better word. The concentration I’ve needed to expend at work has left me little energy for much else. The longer I was working the more difficult it was to do much more.
I had no real problem with this, I wanted to go back to work quickly after Chemo finished and since then spotty dogs and star-crossed lovers have occupied my brain. Strategically, I figured taking time of in the dreary winter months would be a waste. I doubted I could recover mentally or physically while getting blue in the February gloom. So I worked and worked and saved and saved, deciding to have a sabbatical in the spring/summer. Like the rest of creation, I would reawaken with the sunshine.
This plan worked for the most part. I was too busy to contemplate the enormity of the last year and my complex feelings towards it all. It was enough to try to kick-start my sluggish brain and more sluggish body. But glitches began to surface, you can ignore the wilderness between your ears, you can work until you are too tired to think too deeply but your mind will find a way. You might find yourself unable to stop crying because watching a ‘Juliet’ with a similar hair cut to you, trying to work up the courage stab herself, will remind you of you before each Chemo session. Or you may cry because you are sad for yourself, in the Japanese Wing of the V&A, on a Tuesday, when all you were feeling was happy. It could be any number of things I suppose, I find them almost daily at the moment.
Yet, I’m grateful for the tears. I didn’t cry that much after mum died. I’d get a strange pain and drying in my throat, then I’d clamp down and carry on in my peculiar numb way. This didn’t work out all that well for me. The more I thought of tears as a sign of weakness and controlling them as a sort of strength, the sicker and sicker I got. I am relieved at how easily the tears come these days, they don’t last that long if you just let them fall, then you can hunt out a hug and blow them a kiss goodbye for an hour or a day. Healing, they seem healing to me.
It would be helpful, mind you, if I could be suddenly multi-lingual, just so I can explain in any number of languages that I’m ok really and that perhaps those onlookers might like to see the carpet that is lit for only 10 minutes on the hour instead ….
I have been working on my practical chemo guide (for the zillionth time) – it should be hitting little blog by Christmas 2016…..
However, this week marks one year on from finding Burt (the not so benign), 11 February 2014 -fact fans. Yes, it did rather over-shadow Valentines Day, not that we’re massive celebrators (of commercial love day, anyway). This has left me puzzling about how to… Celebrate?….. I don’t know, but attention must be paid. It’s too huge not to.
Especially as I was signed off of the Oncology Rotation last Monday. A moment I practically started counting down to, since the day I got the diagnosis. When it actually happened, I freaked out instead, of course I did! I freaked out to such an extent, I was momentarily jealous of the people still going through treatment. I don’t mean to be flippant, it sounds stupid now I write it (of course I don’t want to do Chemo again) but while on treatment, you have a purpose and you’re in this little bubble. It’s a rubbish bubble but it’s got some structure and doctors; plus you’re probably bald and you look sick.
Oh the irony, when I was bald and looked sick, I complained. Now I’m complaining because while I look ‘normal’, I feel anything but. The scars on my brain feel like they are going to take a lot longer than my body to heal. I don’t want to look sick and bald again but I wish there was something, like the green ‘L’ plates that lets people know I still a bit shaky, all things considered.
So, it turns out, I’ve got a bad case of the “Now What’s?”. I’m like Cinderella after the slipper fits, Snow White after that pesky apple got dislodged or Sleeping Beauty after the Kiss. It’s called a Happy Ending, stupid.
I wish it was that simple. Here am I, cancer free, it should be all sunshine and lolly pops, shouldn’t it?
So why do I feel like I’m just back from an Alien abduction? Strip searched, hosed down and pushed back onto the streets clutching my clothes in my arms and blinking at the sun like I’ve not seen it in a year.
A lot of people asked me, as I was finishing treatment, if I was going to shut down little blog, “now that I had nothing more to write about”; which 1) means they don’t know me very well, I can riff about ANYTHING and 2) is indicative of this whole situation, just because treatments stop doesn’t mean the experience does.
My therapist asked me the other day if I felt if I was in distress; I had to unlock my jaw to answer. I’m like a coiled spring, I guess being in fight-mode for a year will do that to a person.
I sound like a whining, complaining dick, don’t I? Do I get points for knowing that I do? I’m cancer free. I know how lucky I am. I count my blessings everyday, I do. I’m aware I should be on top of the freakin’ world and I’m just not. I’m flummoxed.
There’s a billion things running through my head at all times, it’s a jungle in here, I tell you! A jungle will lots of sly, yellow eyes staring out at me through the massive jurassic-equse foliage.
Heck, I’m still waiting for this to make sense of any of this, and when will my earth mother, live and let live credentials finally be realised? Where’s my goddam wisdom?
I want to grab at people and ask; how long will I remain cancer free, how should I feel about the slim-to-none chance of children, what will the genetic testing be like, do you live like you’ve only got 5 more years, if so, how do I do that? how long before my mind and body feel like they did a year ago, HOW LONG WILL I REMAIN CANCER FREE?!? and on and on my mind whirls.
Do you know what the most common answer to all of these questions are? “Give it another year”. I’m serious that’s what I need, time. Apparently. Well, ironically enough, I think everyone who’s had a brush with cancer has an interesting relationship with time….
So, while I’m grappling with the above and trying to remember what it’s like to be a more normal human being, and whether that’s something I have an interest in. I thought I’d list it out.
The 5 Best Things that came out of having Cancer (if you squint a bit and add a hefty dose of positivity):
1) Writing, this Blog which leads on to –
2) Finding my voice, I’m more outspoken now. I just think; what’s the worse that could happen?
3) I am far less aware of how I look these days. Being bald and moon faced, was an important lesson in vanity… This doesn’t mean I’ve lost my love of lipstick….
It has been 5 years, 5 years! Time, it seems, flys even if you’re not always having fun. A lot has changed, life has moved us forward even when we’d prefer to stay rooted to the spot.
I got cancer, can you believe it? I couldn’t but I got it anyway. It’s a weird one Ma, I spent a summer feeling incredibly close yet incredibly far away from you. I wanted to ring you on so many occasions and say “Shit, I’m so sorry, I never knew quite how tough it was for you.”
It’s a bit like re-reading a favorite book only to flip to the last chapter and find a completely different ending than the one you are used to. An ending that reveals a completely different take on the story. I admired your strength when you were going through it all, I truly did but I didn’t understand it. I do now and that’s broken my heart on a few occasions. Thank you for keeping going with treatment for as long as you did. I understand now, what a huge gift of love that was too us all.
I can’t lie, a certain mother/daughter competion kicked in and I need to thank you for that as well. There were many times (*cough*, after every treatment) when I wanted to quit but I think it became a point of pride – You hadn’t quit, so I wouldn’t either. You win hands down in the stoic stakes though. I was entirely more grumbly and grumpy than you were.
Ma, obviously I miss you and I missed you greatly over the summer but I did have a lot else on my plate. It was strange too, it was this massive thing that I had to negotiate without you. I felt I had to let you go a bit, I hadn’t experienced anything comparative with you, so I had no idea what we’d have done. I guess I grieved for you, another grief in a summer of them. I grieved and I grew up too.
I think you may have gotten frustrated with me while the chemo was on going. I wouldn’t entirely have blamed you, I was frustrated with me at points. Now, though, now I miss your counsel.
I wonder how you lived inside your head after the first time around. My head is like living with a funfair between my ears, which sounds more entertaining than it actually is. It doesn’t settle. I want to yell “STOP”. Riding this Ferris wheel is fun but I can’t actually think for thinking, if you know what I mean. Was it like that for you? Like being overwhelmed with the responsibility of living?
Did you ever think “fuck it I’m going to move to Hawaii or Nashville or Paris and open a cafe?” Did you ever feel that butterfly feeling of having settled for too long on one flower, when there are so many beautiful flowers around? It almost feels there are too many possibilities, that my whirligig self is frightened to pick. Is that living with cancer? Or is that just what living is?
Did you feel all powerful? I have this massive “roar” inside me always on the cusp of escaping. A and Dad are going to hit the roof when they read this, but sometimes I scare myself when crossing the road these days. I stare down cars. It’s an odd reaction to death. It’s not courting it but it’s not all together scary anymore. There are bigger things that scare me.
I respect myself too (it doesn’t sound it with the whole car thing, I know) but it’s like I’m a separate entity. I’m looking at myself through a window and that me, that me that got through all of last year, she’s a total badass. I strut! I’ve never strutted in my life!
It’s not all been cancer, cancer cancer though. The M’s have added another mini M to their brood. They are great parents, far more patient than you or I. Oh, you would be proud.
You’d be so proud of Da too. He is an epic human, I can’t even explain but I guess you knew, you married him. He is the best.
A. and I moved. It was a while ago now, not long after you died. We stayed in the same building and I like the fact you’d still know where we are. We’ve had our moments Ma but we’re doing O.K. I don’t know any other people our age who’ve gone through what we have, we weren’t unscathed but we grew up. I’m kinda proud of us. I love him because even on the bad days he can make me laugh, plus as you always advised, the dude is practical and pretty handy.
I don’t want to stop writing Ma, because it feels like I’ve opened up a little portal between us again and it feels nice but it’s time to let you drift a bit further off.
I miss you, I miss your hands, your soft, soft skin and your weirdly deep clavicles. I miss ducking into bed next you of a morning and chatting. I miss singing musical numbers in the kitchen and how we’d laugh when you would say “probably” in a weird voice, that I don’t even remember why you did but was our joke. I miss you when I work on a show I think you’d love. I miss you when things go right and more when things go wrong.
5 years, I couldn’t imagine it at one time but time plods on and I did survive.
Growing your hair back from scratch is like carrying the cutest, rarest pet with you at all times. That lives on your head.
I think of this new growth as fur not hair at all. It has this minky colour, which is more blonde-y, grey-y , brown-y (it’s mink, that is the colour I just tried to describe-y) than I’m used it being. It’s short and thick and sooooooo soft, like a pelt of fur. I may be hunted and skinned at any moment.
I croon to my hair and rub my hands over and over, my now not bald scalp. Like my own personal talisman. A., so he tells me, gently runs his fingers over it while I’m sleeping. I don’t know how it feels to watch the person you love change from so many different extremes (I hope I never get to find out), but I’m sure I’d be pleased when they got their hair back too.
Some of my work colleges only met me for the first time as a bald, moon-faced creature. I didn’t have eyelashes at the time! I find it extraordinary that in 2 months I’ve grown approx. 1 cm of hair and more eyelashes than I have patience to count. The fact that I don’t feel I have the time to count my eyelashes, should tell you how drastically my life has changed again in the last few months.
People want to and like to touch my head, it looks so much like a velvet cap. I think it’s difficult not to want to stroke it. You see? Pet on my head. When I meet up with people after time a part, I automatically lean in so they can pat me. That’s weird right? I’m pretty sure I’ll stop this soon.
The touching of my head by others, often without permission, took no time for me to get used to. I was going to write that it feels weird and like a strange invasion of personal space but stroking my hair comforts and fascinates me, so I assume it does others too. It’s such a joyous time. I’m happy for people to share my joy.
I guess this may be how heavily pregnant women feel, though I read most women aren’t so into randoms touching their bellies. Are bellies more intimate than heads? Perhaps as you are growing a person not just hair….
As I’ve been told quite recently that conceiving a baby is not likely (we’ve got 2 chances and about a 20% success rate, each time); this is perhaps the only time people will feel able to randomly croon while patting a part of me, so feel I should embrace it.
See what I did there? I got all serious in a pithy piece about hair. I’m not sure how I feel about this information yet. It’s pretty fresh but obviously my subconscious it interested in discussing it.
So, so I went to see a specialist, who told me the news. I got pretty choked up, more from shock than anything. My first thought was; this would be so much worse if I’d always wanted children, if I couldn’t imagine my life without kids, I would be devastated right now but I’m not sure I do and I totally can, so just breath. Then I told A. and he took me in to work. I’ve not, we’ve not, had much time to unpack this whole thing yet.
I’m angry it’s another area of my life that I don’t get to control anymore. I’ve observed, even in the short amount of time since receiving the news, that people assume you want or are able to have children. I’m not surprised or feeling particularly outraged by that assumption but truth be told A. and I are some what ambivalent.
We also feel we are in the middle of a battle that hasn’t ended yet and finding this out is like losing a squadron. It’s not nothing but we have to concentrate on the whole battlefield at present. We can mourn later if that’s what we choose to do.
A. has been showing me pictures from magazines of older couples with lovely homes and wonderful bear sized dogs; he says that they look happy. They do look happy. We are very happy at the moment too and as we are ‘living in the moment’, I think I’m as fine as I can be.
Besides I get to carry around a pelt of fur, on my head, like a pet – not everyone gets to know what that feels like.