isn’t cancer fun?

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You can never not have had Cancer.

So I mark my “burtaversary” (long story you can read about here) most years, in so far as it has been 3 years, and I’ve marked it every time. Sometimes it’s from the time I found the lump, sometimes it’s from the time I lost the lump. This year it’s actually from when I was told Burt (aka the lump) was cancerous.

I found out I had cancer via text and a phone call. People are sometimes shocked by this, they think it’s cruel and unusual of my Doctor but actually I think it’s more humane.  Everyone knows that good news can just be told then and there, so asking to see me in person was a bit of a give away. Plus the way the news was delivered, it was not the worst thing that happened that day, so ya know, pick your battles. If the ‘how’ and not the ‘what’ is distressing you then count yourself lucky, I’m guessing you’ve not had cancer, our frame of reference is somewhat wider.

Before my own diagnosis I thought I was pretty cancer savvy, up on the lingo, the treatments, etc I didn’t really know ANYTHING and I wasn’t going to learn much on that first day, other than mammograms are surprisingly pinchy. Nothing really sinks in after the phrase “you have cancer”, you are all teflon and shock after that.

So unsurprisingly it took sometime for the “you can never not have had cancer” factor to really start to make sense, and boy do I remember being pissed off about it.

The YCNNHHC factor is not something you have to deal with at first, first it’s all about the removal, the meds, ‘the getting through’ but then slowly it begins to dawn on you. For me, my age and type of cancer meant that I would be on treatment for a LONG time, preventative measures.

The reason I’m writing all this now (and probably again) is that 2 weeks ago I came off  Tamoxifen again (I had a brief stint without it last year, here), hormonally speaking things are messy at present. I had decided to come off them probably 6 months ago, after it became clear that the lower dose was not any easier to live with, but I stayed on it, I managed 2 years in the end, which is sort of the bare minimum.

My doctors wanted the extra year on the stuff because well, it’s effective and they didn’t want the cancer to come back. That’s how they talk, I don’t think they mean to, or maybe they do because they do not want the cancer to come back but it’s hard to hear about the cancer coming back.

My rebellious nature means 2 days ago I was sent to see my Oncologist to talk over options. Due to a mix up, we’d been waiting to speak to the Doctor for over an hour:

You have to wait in oncology, where you’ve heard most of the distressing news of your past cancer self. You have to wait surrounded by people who are sick, who are fighting the good fight. You smell the familiar smells, see some familiar faces. You have to get weighed and measured again, which is pretty much a weekly thing while on chemo, but you can’t for the life of you figure out it’s relevance now; unless it’s to remind you that no matter what you do you are still A STONE heavier than before cancer and that is somehow pretty humiliating.

In short you get sad and anxious in ways that are also familiar. I don’t mean to toot my own horn here but it takes a certain kind of badass to sit in that waiting room and still want to shed the protective layer that Tamoxifen affords you – badass-ness, recklessness or maybe hormone therapy is actually incredibly crappy.

Eventually you are speaking to your oncologist, who you’ve not seen in 2 years. He is kind and sort of giddy to see you, in a way that reminds you that you are his success, and that you are more than likely a highlight of his day. However, you are his success and you are wilfully going off treatment, so you feel you are a disappointment.

Like I said, he’s kind but he’s doing his job, he’s surrounded by cancer, he knows that secondaries are no joke, he’d want you on Tamoxifen for ten years. The term quality of life gets banded around quite a bit, other treatment options are mentioned, none are appealing, all involve keeping a level of unnatural medication in your system for years at a stretch, or having your ovaries removed and plunging yourself into actual menopause. None of which in your 30′s sound like what you want to be doing with yourself. It’s the opposite of sexy, I’m pretty sure if you were to look up this conversation, it would be in the dictorionary under ‘The opposite of sexy’. Though, perhaps it would read:
           The opposite of sexy : 1a : The above conversation. 1b : Donald J Trump.

Nothing is decided but the choice you thought you’d made, sensitively, painstakingly, rationally isn’t so shiny anymore. You can’t feel as proud as you had, for taking what you think is a brave decision to live your life; to purposefully hold higher, quality over quantatity because in Oncology, it seems cancer will inevitably come back and you are playing russian roulette.

You can never not have had cancer, it’s the gift that keeps on giving, if by gift you mean thing that makes me feel incredibly sad and pretty tired.

So what now? Well, I want a year free of all medication, it used to be a lifetime, however long that was going to be but I was chastened by Oncology. Oncology would prefer this to be 3-6 months but I’m standing firm, I want to remember what it was like to feel entirely healthy, to give my system a full break not just a pause. I want to use the time to become strong and healthy in body and mind, away from the pills. And then I guess we will reassess.

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Pointing and Laughing at Chemo and thus at me VOL 1

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.

and

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.

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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.

++++++++++++
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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Year One

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….

4) Who my friends are and they are blooming ace.

5) Love, lots more love.

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(Re)Growth

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.

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10 things I sometimes contemplate may have given me cancer but probably didn’t….. VOL 1

Every now and again I have a moment. It could be passing a window, a mirror or any shiny object. It could be glancing down at my arm and seeing tubing. Sometimes it’s wrapping my arm up in plastic wrap to wash. Something every day normal  but extraordinary.

It makes my brain explode. It’s the biggest “what the fuck?”, it’s a panic in my stomach. It’s a “HOW THE HELL did we get here?” Moment.

Everyone must get them, at the moment mine seem to be on crack. I normally have to go find myself out a hug. They floor me, they really do. In all honesty, I try hard to avoid them. I’m not advocating the suppressing of emotions but contemplating the whys and wherefores, aren’t going to help me presently.

During Chemo Wk 1, I have plenty of time to ruminate – here’s my first list…..

  1. When I was small I once got caught eating raw bacon – Mum made me be sick.
  2. When I was small I once ate all the Red Sanatogen Children Multivitamins in the bottle (anyone remember those chalky balls?). Brother and I both liked the Red Ones. We didn’t like the Green Ones. I surmised if I ate all Red Ones in one go, I’d not have to share (devil child). I managed to climb up to the kitchen cabinet and figured out the child-proof lid. I got caught by Mum. Mum made me be sick
  3. When I was small I once sucked all of those ‘smelly pens’  to see if they tasted like the smelled. They didn’t. Caught by Teacher (multicoloured mouth/face gave me away). Laughed at by Doctor and Mum.
  4. The sheer volume of cake I’ve eaten in my life time.
  5. The fact that until recently I really didn’t like exercise, preferring to read, therefore I tried very hard not to do any. Ever.
  6. My worrying. I used to worry even if I had nothing to worry about, I’d worry that I’d forgotten to worry about something. Fun to live with, yes?
  7. That time I sunbathed topless and burnt my nipples…..
  8. When I was smaller (but actually not that small) we got our first family microwave. I used to sit on the kitchen table and watch it go round and round, cooking the food. I love washing machines too, especially when you dye fabric. I *may* have been a cat in a former life. I don’t own a microwave now.
  9. I used to really love those Apple Cider ice lollies from the Ice Cream Van. I loved the 2p Beer Bottle sweets too. Anything that tastes that chemically can’t be good.
  10. I sometimes use my laptop while lying down with it on my belly / chest. I’m going it now. I should probably stop……

 

To conclude I was a weird kid, it’s a miracle I survived. I also once stuffed a catkin up my nose. It (inevitably) got stuck and needed medical assistance to be removed. In fairness, I was only following my brother’s example.

For the record, cutting down on cake, exercising more and trying to worry less are going to help your health. As would; not eating crazy, inedible things and standing in front of the microwave…..

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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.

pollygosh_i-robot

I, Robot

We’ve been staying with my Dad (Sainted, Sainted, Chief of All Saints) for a while now. For matters of convenience and loveliness mostly, and the small fact that car journeys make me want to vomit, but mainly for reasons of loveliness.

 

I’m not sure if it’s because there are more mirrors here, or they are in places where one actually look in them (a mirror I wouldn’t look in!), or if it’s because our flat is smaller, so there, you can’t get so far away from them, for a more ‘overall’ look. At Dad’s they seem to be hung perfectly and I’ve discovered that from the waist up, my body looks like a battle field. More so now I have my PICC line in.

 

When I was little I remember Brother, painstakingly plotting, designing and executing vast battle grounds in our bedroom. Duvets, pillows, stuffed animals became landscapes for Lego, StarWars, Transformers and the odd Ninja Turtle to do battle over. Brother was quite advanced, I remember one such scene-scape actually having a soundtrack.

 

If it wasn’t so Avant Garde and frankly, creepy, I’d strip to the waist, lie on the floor and allow many a Lego battle to use this scarred and beaten ground to do there worst. I feel I’ve been doing that a lot lately, for any medical practitioner who wants.

 

There’s the red scars beetling their way across my armpit and left breast – thin, precise, skilled but angry looking and out of place, to me, having lived without them for 34 years.

 

There’s also the lack of symmetry, I find it far from pleasing. I’ve been giving it some thought and the only way to describe it is thus; imagine a marble bust, imagine a chisel aimed at 45 degrees at the bottom of the Busts bust. Now take that stroke. That is my left breast. Again perfectly rendered, skilfully done but not the body I’ve been used to for number of years now. Topped with an as yet still blue nipple – faded like a loved pair of jeans but blue enough to be Extra-Terrestrial.

 

I am feeling a certain kinship to the Mavel Comic Heroes. Iron Man or Captain America especially, thanks to the new PICC line. It’s a tube that leads from a vein in your arm to inside your chest cavity – about 2 feet of tube FYI. It’s clever and disturbing (let’s just say I’ve also been feeling for Wolverine of late) how they how they insert it. It helps preserve your veins from the rigours of Chemo but subtle it ain’t, unless you like the stares of small children, long sleeves are a must. Which is annoying because I have a lot of weddings to attended this summer.

 

So I say Yes to Battlefields, wars waged inside and out, I believe, according to someone in the 80’s Love is a Battlefield also. I can tell you, I think it takes a certain, strong kind of person to tell you, you are beautiful while one is dealing with all this (or even be prepared to lie about it). I’m frickin’ lucky with the Iron Men in my life, I’m too vain to do it without them.

 
 

Side Note – Chemo 1 is done. I don’t want to talk about it at the moment.

PollyGosh!-CA

Reality Check

I had a reality check yesterday, a very timely one. I’ve lost count of the number of obvious statements I’ve made on little blog but here comes a corker – I am not doing all of this for fun, my Doctors and the people I love are not just insisting I do this, so I have more fodder for the my writing. While I don’t want to over state it, this has to happen because if it comes back, I may not get so lucky and that’s important to remember, the serious, not to be messed with, point to all this.
I’ve been I bit complain-y the last few days, confronted by everything that’s going to change, feeling out of control. Basically feeling sorry for myself and forgetting the Bigger Picture because Doctors don’t like to dwell on the Bigger Picture and that sometimes makes me forget it.
Don’t get me wrong, you could slap me with a kipper and call me Tuesday, I’d still be more gobsmacked by just how far reaching a Cancer diagnoses is. I’ve also, as I mentioned to Dad yesterday, not been able to find one actual fun part of that diagnoses. To qualify that, I’ve made some most excellent memories lately, I’ve felt very loved, laughed a lot and (I know I bang on about this) am incredibly lucky but in terms of actual diagnoses and treatment – slim to none in the enjoyable department.
So, in the face of the next 4 months, it is easy to get and hard to shake a vicious case of the “Why ME’S?!”. There are times when trying to tackle that unanswerable (e.g don’t go down that rabbit hole) question, when I get what A. likes to call a ‘vacant worry face’ – basically I stare of in to the middle distance and my lower lip twitches, it is deeply, deeply attractive.
Anyway, yesterday I had a rare moment of clarity. For me, it’s that feeling you get when you’ve hiked up a massive hill, it’s been tough, it’s hot and dusty, you’ve forgotten why you’re doing it and you’ve drunk all your water. There’s sweat sticking your shirt to your back and you’ve probably banged up your knee and you’ve got a grazed palm from where you’ve slipped a bit – it’s throbbing.
But then you’re up there, you look behind and see just how far you’ve come. It’s shocking because you still don’t remember why you started it and it seems such a long way, for no real reason. That fresh blast of air hits you, raises those hairs on the back of your neck, soothes that throbbing hand and cools the sweat. You reach in your pocket and yes, there’s a Mars Bar (no longer recommended). You look out, munching – neither behind and or in front – but straight ahead, the view is incredible, it’s so silent and so still – it’s a tiny moment of peace with everything.
Of course, you know, if you turn your head, you going to see six more peaks to climb, with six more troughs to go with them. They’re ahead of you, in your way, no crafty short-cut but a moment of clarity is all it takes some days.
PollyGosh! desert 1

We are doing this, I am doing this, because I only want to do it once. I don’t want the white noise of being told the un-hearable, I could do without telling my loved ones again, without tests and needles and operations. I doing this so I can do this once. Then we move on. You hear me Universe? THEN WE MOVE, THE FUCK, ON.

pollygoshview

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…..