Clean Humour

13th March, 2014

Properly-Bald-Chick Problems, #14: Not knowing where to stop when cleansing your face.
I just kinda....keep going. I have the cleanest scalp EVER.

Chemo Day

18^th February 2014

Yesterday, Matt and I took our little guy out for a movie (Lego Movie For The Win!) and Japanese food, making a bit of a day of it because we knew that my chemotherapy would begin today. I feel a little like a lamb to the slaughter, honestly. L, my medical oncologist, has warned me that it'll be a rough few months, as the regimen I'll be on is known to have many and unpleasant side-effects.

Today, my friend K has taken Little Dude out for the day with her own son. They'll be having fun at a scavenger hunt and the beach, so that I don't have to worry and Matt can come with me to the ward for my first treatment. I feel nervous, so it helps that she's offered.

As I enter the ward, I'm hit by a scent of bleach, antiseptic and medicine. Chemotherapy patients often have suppressed immune systems, so everything needs to be kept absolutely pristine. In the toilet there's a poster, informing us that chemo patients should sit to urinate, close the toilet lid before flushing twice and so on, in order to reduce the danger we potentially pose to others. A booklet I'm given explains that if I vomit copiously, whatever I've contaminated needs to be double-bagged and removed by the Council's Environmental Services division. Yay! This sounds like a whole lot of fun!

In my more wicked moments, I wonder whether throwing up strategically – perhaps in the office of politicians I disagree with, for instance - could cause an evacuation of places I dislike. Then the moment passes, and I behave myself again.

After a short stay in the waiting area, we're taken into a private room where F, a curly-haired and smiley chemo nurse, takes us through what we can expect for the next few months. I'll be having treatment every three weeks, with a set of blood tests the day before each session to make sure my blood is healthy enough to withstand the onslaught. The first three treatments will be “FEC” - a combination of Flourouracil, Epirubicin and Cyclophosphamide – and will be given by “push”, where a nurse will use syringes to inject the drugs into my bloodstream via a cannula in my vein. After that, my final three treatments will be with a drug called docetaxel, which has a reputation for being less nauseating than FEC, but more damaging to the immune system. When I start docetaxel, I'll also begin treatment with trastuzumab (Herceptin, to give it its more common proprietary name), a monoclonal antibody, which I'll need every three weeks for a year as my particular cancer is HER2+ and the treatment is aimed at reducing the probability of it returning or spreading.

Mmm, tasty toxins!

F explains the side-effects that I can expect, which range from nausea and immunosuppression, to nerve and vein damage. I'm also going to go bald.  I twist locks of my long hair around my fingers as she talks, very aware that I'll soon be unable to do so. While I'm a little upset about the coming indignity, it doesn't seem very important in the greater scheme of things.

I sign a consent form and we finally go through to the ward itself. Reclining chairs and tables are placed around the room, along with water coolers, IV stands, magazine racks and the other trappings you'd expect to see in a hospital ward. Tired-looking patients sit in some of the chairs, many of them wearing headscarves or just displaying their bald heads to the world, and the nurses mill around them, checking IVs, blood pressures and temperatures as well as administering the medication.

Shortly after I arrive in the ward, a patient is removed on a trolley, hooked up to an oxygen tank. Apparently she's had a reaction to her chemotherapy. I feel for her, as well as being rather selfishly worried that the same thing will happen to me.

I get weighed and take a seat by the window, in the cool winter sunshine. After a few attempts, F manages to get a cannula into a vein in my left arm, and starts the saline drip, then disappears to the pharmacy to have my chemo meds made up. I look at Matt, nervously, and take a deep breath. I've already survived surgery, but I'm more nervous about this treatment. It seems somehow more intrusive to have my very bloodstream contaminated with these chemicals, but I know from my research that it's also one of the best treatments for my cancer, so I determine to grit my teeth and bear it. The benzodiazapene relaxant I'm given probably helps me to stay calm, and combined with the anti-emetics makes me a little sleepy.

Here goes nuthin'!

F returns with a tray of huge syringes, each marked with my name, patient number and the name of the drug it contains. The epirubicin is bright orange – the exact colour of Tizer, a viciously-bright drink I remember from my childhood. Later, I'll find that I can no longer look at anything of that colour without feeling nauseated. There are warnings all over the syringes – including one that says the medicine is a corrosive substance and must be kept out of contact with the skin.

Yay me! This sounds like fun...

As F inserts the first syringe into my cannula and starts to push the viscous substance into my vein, I grip Matt's hand and close my eyes. The whole process takes about thirty minutes and during that time, I experience some pretty wild sensations. When the cyclophosphamide push begins, I can taste it in my mouth – a strong, unpleasant chemical taste, hardly surprising since the stuff was developed from mustard gas. Shortly afterwards, my nose starts to run uncontrollably, as do my eyes. Each of the three drugs brings its own immediate effects.

Eventually, I'm done. F leaves me on the saline drip for a while afterwards, in order to ensure I'm not having any other immediate reactions, before removing my cannula and setting me free.

Matt and I decide to go to the Maggie's Centre in the hospital grounds, as it will be a while until G can arrive to drive us home. I have a dreadful headache so we make ourselves a cup of tea and sit quietly in the beautiful building. As I put the mug to my lips, I nearly spit out the tea.

“Matt, I think this cup's had something strange in it.”

“What do you mean?”

“Maybe it's not been washed properly. It tastes of cumin and coriander, really strongly.”

Matt empties out the cup, washes it, and makes me another tea. I thank him, raise the hot drink to my mouth, and take a sip.

It still tastes of cumin and coriander.

Matt just looks at me. Then he takes the mug, takes a swig of tea, and looks at me again, as if I'm completely crazy.

“The tea's fine. It's you.”

Honestly, it really, really tastes of cumin and coriander! I can't believe that he can't taste it, until I take a bite of the biscuit he brought me to eat with the drink.

The biscuit....tastes of cumin and coriander.

Oh. Great. He's right.  It's me.

This comes to be a bit of a theme between us. I find that random foods over the next few months taste of Indian spices, whereas other foods taste of nothing at all, or just have disgusting flavours to me. Chemotherapy seriously messes with your senses.

I give up on the tea, not in the mood for accidental chai. G arrives to drive us home, where I've arranged to have friends come over to take my mind off things, and take the hair off my head before the chemo does.

Intermittent Laziness...

Every now and then, I might not post here for a few days.  I'm still having immunotherapy treatment and frankly, it kicks my ass for a few days each cycle.  One of those days is today.

I feel hungover, which is completely unfair as I've had no wine!  Bring on the wine...

So...yes.  I'll post more CG stuff in a couple of days, when I'm able to think without feeling like my head's going to explode!  :D

Letter To My Right Breast

14th November, 2013

I post to my Facebook wall:

Dear Right Breast,

I'm very disappointed in you. I thought we were friends. Did I ever insult you? No, I think you'll find I was rather nice to you, and have appreciated you for most of my adult life. If you don't count those awkward teen years, at least, and honestly, I thought we were over that. You never looked the sort to hold a grudge, but obviously I misjudged you.

All of which begs the question: why are you trying to kill me?

You just wait, bee-atch. I'll show you who's boss.

Yours sincerely,

Gilly xx

I feel a little stronger today, but it's fragile.  I keep forgetting, for very short periods, that I have cancer.  I get on with the busyness of life - shopping, playing with my son - and then it hits me again, and every time it does, a profound exhaustion washes over me and I have to sleep.

I think my brain is shutting down, to avoid dealing with this.  I can't say I blame it.

Purple

November 14^th, 2013

One day after my diagnosis, my best friend M flies in from Ireland for a few days. I'm in shock from the news, sleeping much of the day and utterly, bone-achingly exhausted even when I'm awake. I feel a weird combination of overwhelmed, numb and on autopilot, with moments of disbelief and fear sometimes adding to the rather unpalatable cocktail.

Given the desperate nature of the situation, I decide to dye my hair dark purple. That'll obviously help.

At the very least, I know I'm going to be losing the lot in a few months, so I may as well find out what it looks like in my favourite colour. I like it, but unfortunately it doesn't actually cure the cancer.

Paralysis

November 2013

It's the first day I've been back at the hospital since my diagnosis, and I'm standing in front of a waiting room door.

I've been standing in front of the open door for several minutes now, but I'm no closer to walking through it. I'm frustrated with my procrastination, but every time I look at the sign on the door, I feel like there's an invisible barrier preventing me entering. After genuinely considering waiting for my appointment in the corridor, I finally make a monumental psychological effort and step over the threshold, encountering what I imagine are some rather sympathetic and understanding looks from the other patients.

The sign simply says: 

ONCOLOGY PATIENTS' WAITING ONLY

I had a similar reaction the first time I went into Maggie's Centre, a cancer support facility in the hospital grounds, last week. Then, at least, I had M with me and he'd understood implicitly how difficult it would be for me to walk through the door. While the logical part of my mind knows that I have cancer, and that walking into a support centre (or an oncology waiting room) doesn't alter that fact one iota, there's something hugely psychologically jarring about making that shift from “Gill Before” to “Gill With Cancer” and I find myself incredibly resistant to it.

It's much easier after the first time, in both cases. Good thing, really, as I'm going to be spending a lot of time here in future.

My Breasts Become a PSA

December 2013

My breasts seem to have become a Public Service Announcement, all on their own. Having spent my entire adult life a little body-shy and low in physical self-confidence, I find it quite strange that I'm now more than happy to let curious female friends poke, prod and otherwise examine my breasts. I hope that it will give them the confidence to examine their own on a regular basis, or failing that, at least scare them into doing so. I don't want any of them to have to go through this.

My right breast is still badly bruised from the biopsies – a marbled mess of black, blue and yellow –

A few weeks after biopsy - mostly healed but colourful

but doesn't hurt any more, at least. Some friends ask shyly what the cancer feels like, and I gently offer to let them feel it, on the outer quadrant of my right breast, if it will help. None of them turn me down. Others, the more brazen types, ask outright whether they can feel the tumour in order to have some idea how a cancer might feel. I take great pains to point out that everyone's body is different and that each woman needs to know what's normal (or not) for her, but otherwise sure, go ahead. So many others have, after all, even if you don't count my rapidly growing medical team.

I feel strangely detached from my breast. I'm glad that something positive can come of my willingness to have any and all curious female friends (wo)manhandle my chest, but I'm aware that I'm emotionally and psychologically distancing myself from it, perhaps in readiness for losing it altogether in January.

This Is No Orgasmatron!

November 2013

Today I'm having a breast MRI scan. One of the issues with having breast cancer at an earlier than average age is that the breast tissue can be too dense to be definitively scanned with conventional mammography, so while we know for sure that I have cancer in my right breast, my doctors can't say with absolute certainty that my left one is clear.

In case you've never had an MRI, you're placed on a bed which rolls into a tubular machine. It's a little claustrophobic, but not particularly invasive or unpleasant. The procedure for a breast MRI, though, is a little different than the scans I've had in the past.

I'm asked to lie on my front, with my chest on a scanning platform and my arms above my head. My breasts – and there's no way to describe this that makes it sound dignified – dangle below me into two holes in the platform, under which there are plastic cups. Large, cold plastic cups.

Not for the first time during an important medical test, I get a fit of the giggles. The radiographer pauses in her explanation of the test I'm about to have to ask if I'm feeling OK.

“Yes....just....” I gasp through my now slightly hysterical mouthfuls of laughter. “I feel like some sort of bizarre, medical Barbarella.”

The radiographer starts laughing, and then we're both gone for at least five minutes. Every time one of us stops, the other starts. We decide to name the procedure the Inverted Barbarella Scan. It somehow seems far easier to bear the possibility of bad results when the test itself, and our now-shared name for it, make me laugh. Once we're back under control, the woman puts large noise-cancelling headphones over my ears, switches on the CD – I came armed with Tori Amos – and rolls me into the giant magnetic contraption.

Thankfully, the scan later shows that my right breast is alone in its murderous intentions, acting entirely without the aid of an accomplice.

The Biopsy Blues. And Blacks. And Purples...

November 13th, 2013

I'm lying on a medical trolley, trying to breathe as a long needle delivers local anaesthetic deep into my breast. I only discovered that I have cancer about an hour ago, and everything just seems unreal – far away and disconnected. The pain brings me back to my situation, before my brain insists on closing everything down again, leaving me feeling as numb emotionally as the drugs make me physically.

Even in the midst of this, I find myself trying to lighten the situation. I tell the nurses that if they don't save my life I'll haunt them, loudly and repeatedly. They're very kind about my clumsy and inappropriate attempts at humour: I can only presume they've grown used it over many years of performing the procedure on shocked patients.

Once my breast is numb, feeling like a giant marshmallow randomly stuck to my chest, the biopsy begins. Biospies, really: plural. I have ten tiny pieces of flesh taken from inside my breast, using a contraption that makes a noise exactly like a staple gun. I feel the sudden pressure each time they extract a sample, but it doesn't really hurt. After they've finished the biopsies, they use a different type of needle to insert a few tiny titanium clips into the flesh around the tumours, to aid with identifying them in future. I want to scream that I don't want the cancer flagged. I want it out of me.

Halfway through the session, Matt arrives. He looks pale and shaky, and I comment that perhaps he should be the one lying on the trolley. One of the nurses brings him a chair, but points out that I'm the patient, so if he faints, they'll just leave him there and step over him.

I think he thinks they're serious. Perhaps they are.

Matt holds my hand, determinedly looking at my face rather than the breast being punctured, bruised and battered. I try to cry, feeling it's somehow the appropriate reaction, but the tears won't come.

Back at home, once the anaesthetic wears off, I'm pretty sore.  My little boy wants to snuggle up to me, and I have to restrict him to one side of my body because the other hurts too much.  Even weeks later, I'm black, blue, yellow and green, bruised into a mosaic of dreary colours by the biopsy damage.

On Inappropriate Film Choices

Late 2014

I get a call from my friend S, who wants to know if I'm free to join her for a trip to the cinema and our favourite frozen yoghurt haunt tonight. I jump at the chance as I spend too much time indoors right now, and she's fun, distracting company.

The film is gut-achingly funny – beautifully-scripted, well-acted and perfectly timed. Part way through, it's revealed that one of the main characters is dying of cancer. I cast a sidelong look at S, who is trying to shrink back into her seat, mortified. I'm fascinated by how a fully-grown adult woman can attempt to squeeze herself into such a tiny space, in an attempt to disappear in shame. Something about this strikes me as so funny that for the next ten minutes I'm laughing at her instead of the film. Part way through this, she catches my eye...and bursts out laughing. I think nearby audience members think we're doing drugs.

Later she posts to Facebook that only she could take a friend in cancer treatment to a film about someone dying of cancer. Poor S. It was a great night out though!

Some time later, S and I are discussing that evening, and she confesses that she has a history of similarly inappropriate choices. She once took a friend out on day-release from a mental health unit, only to discover that the film she'd chosen concerned nuns running a horrific mental asylum, scenes of systemic abuse and brutal treatment. Thankfully, her other friend found the whole situation (and, I presume, S's attempts to become one with the cinema seat) as amusing as I found ours.

I'm Just Glowing!

November 2013

I'm at the hospital for my “staging tests” - a fancy way of describing a whole batch of examinations and procedures designed to work out exactly how far cancer has progressed through the body, in order to help my medical team put together the most appropriate treatment.

Proving to the CPPs that I'm OK

I meet J, an efficient but pleasant nuclear medicine nurse, who is to set up a full-body bone scan for me. She explains in her rather posh voice that I'll be injected with an IV substance that will bind to my bones, allowing any “hot spots” indicating spreading cancer to show up in a scanner. This all sounds very space-agey to me, so I'm up for it. Hell, I wasn't doing anything else this afternoon, right? I feel like I'm watching a fascinating medical documentary, which would be great if not for the fact I'm starring in it.

When it's time for my injection, she puts on protective long gloves. She then gets out a syringe lined thickly in metal, with a radioactive warning sticker on the side.

“So, you're protecting yourself from that stuff, right?”  

Ever wanted that "glowing skin" look...?

“Yes, it's a radioisotope. It's radioactive.”

“And....you're putting it in my vein?”

“Yes.”

“Hokay, then...”

I find this strangely amusing, and can't stop chuckling. Two hours later, I've had some lunch and returned to the Nuclear Medicine Department for the scan. As I lay on the scanner bed in position, I remember that some tests I've had in the past require me to hold my breath at intervals, so I ask if I can breathe normally during the scan. J is completely deadpan.

“I'd suggest you breathe normally. The test takes twenty minutes. If you hold your breath for that long, you've got more to worry about than cancer and being dead would probably make the test pointless.”

I start laughing, and then can't stop. I'm lying in a huge nuclear medicine scanner, diagnosed with cancer, and I have an absolutely incapacitating fit of the giggles.  Thankfully, J is a patient sort of woman,  and waits until I'm calmer before beginning the scan, which eventually shows that I have no cancer in my bones.  So far, so good!

D-Day

November 13, 2013

A few months ago, I noticed a lump in my right breast. My mum has had completely benign lumps before, as have a number of friends, and I'm not the naturally panicky type about medical matters, but I Did The Done Thing and took myself off to the GP. The locum I saw that day examined the lump and said that he thought it was just “nodular breast tissue”, nothing to worry about, and to come back if I did get worried in the future.

I went home, and duly didn't worry.

The lump got bigger, to the point where I could no longer put it down to nodular breast tissue. It felt like a muscle had grown in the fat on the outside portion of my breast – thick tissue, harder than the soft flesh around it.

The GP I saw this time was clearly concerned, and arranged for me to attend the local Breast Unit, where she said they'd be able to run tests and (at best) reassure me that it was a cyst, or something else benign. I still didn't worry.

So on 13th November 2013, I'm running late for my appointment. I'll attend the Breast Unit on my own as the worst-case scenario I imagine is that I'll have a biopsy and be sent home to wait for results. I call a taxi, leave the flat to meet it....and duly walk full-tilt straight into the door frame of the car as I attempt to get into it. I hit my head so hard that I fall unceremoniously onto the pavement, hurting my neck and back and worrying the driver.

A less optimistic soul might decide that this is a bad omen, give up on the day and go back to bed.

Not one to take a hint, apparently, I continue with my day. I'm still relaxed (if sporting a rotten headache by this point) and arrive at the hospital armed with a good book, a phone with various Facebook chats in progress, and a shopping list for dinner forming in my mind.

The waiting room at the Breast Unit is a strange sort of place. The majority of women who present with breast lumps have benign conditions and will be absolutely fine, but of course that doesn't prevent every woman (and the statistically rarer man) at the clinic from thinking “what if?” and worrying about cancer. Looking around the waiting room, I see every age and condition of woman. There's the young woman in the corner with her mum, making light of the situation but obviously unsure what the result of her day's tests will be. On the opposite side of the fence, the older woman looking tired but rather elegant in her headscarf, talking about her upcoming surgery with her friend. While I'm there, an elderly lady talks quietly to a nurse, crying, because she's just found out her breast cancer has spread to her liver, and is no longer curable.

Despite this, it's a stubbornly cheerful place, with smiling nurses and a team of cancer survivors relentlessly pushing tea and biscuits. Tea and biscuits will become a motif in my life. At one point I will come to suspect that “tea and biscuit therapy” is a little-known but universally effective cancer treatment, such is its apparent popularity in cancer treatment centres and support organisations.

As the day goes on, I have a clinical examination (that's having your boobs prodded and poked, to you and me), then I'm sent for a mammogram. After that, I'm given a breast ultrasound – younger breast tissue can be difficult to diagnose via mammogram due to its density – and when I ask the radiographer for some indication of how things look, her only response is a frown as she tells me “Well, I'm not very happy.”

I'm asked to return to the waiting room until my doctor, Dr. M., can see me. In the meantime, I send a couple of messages to friends on my phone. Beautiful Lisette, who has been through all of this before me and is through the other side now, cries with worry as I tell her that things are looking more dire as the day progresses. She virtually holds my hand throughout the day, and that means a lot to me. A small group of friends I call my Crazy Painty Peeps or CPPs, a fabulously dysfunctional but ultimately loving bunch of creatives, work hard to keep my spirits up as I gradually start to feel less optimistic about the day.

When Dr. M. calls me into her office, I take one look at her serious expression and tell her I don't like the look of this. She tells me that we have to talk about what happens next...and at that point, I know I should have brought someone with me. It transpires that there are some cases – and mine is included – where cancer can be positively identified even before the standard biopsy. The conversation goes something like this:

“So....you're telling me you think I have cancer?”

“Yes.”

“But I've not had a biopsy. Are you just suspicious, or fairly sure?”

“You'll have the biopsy today, but we're sure.”

“How sure? A little sure? Or sure enough that I should be telling my family and friends?”

“Put it this way: if your biopsy came back clear, we'd presume that we missed the tumour and would repeat the test, rather than presuming you were clear. As a doctor, I would be absolutely stunned to discover this was anything but cancer, and in cases like yours I've never known it to be anything else.”

At this point, I realise my mouth and throat have gone completely, arid-desert-at-midday dry. I pick up the plastic cup of water in front of me, then realise that my hands are shaking so much that I can't lift it without showering both of us. I carefully place it back down, using both hands.

I look at Dr. M. and speak slowly and clearly, knowing that if I don't hear it simply, I might find a way to twist things, to remember it incorrectly.

“I have cancer?”

Dr. M. looks at me, compassion showing on her face. She must have done this so many times before that it's almost routine, but for me it's a one-off, a bomb dropped into my life. She nods her head. Yes, I have cancer.

I
have
cancer.

I just sit there, watching my hands shake, concentrating on breathing and wishing I'd had the sense to bring someone with me today. At the same time, I'm glad there's nobody who loves me to see me like this.

I have cancer. How the hell did that happen? I'm forty years old. There's no cancer in my family. I have a six year-old son I love more than anything in the world, and I can't bear the thought of leaving him to grow up without a mother. I feel like I've been dropped into someone else's life – an alien landscape that's had all the colour suddenly drained out of it. It's a bizarre and deeply unpleasant feeling.

Everything's very quick after that. I meet a very compassionate and professional surgeon, T, who draws on me with a black Sharpie and sends me for biopsies. Whilst waiting, I call my partner Matt, but it's a bad line and he gets cut off thinking I've told him I have terminal cancer, calling back in a panic before I can reassure him that, at least for now, I'm not considered to be dying.

I have the biopsies, more mammograms to check that the tiny titanium tumour tags (alliteration improves any situation, right?) they insert into my breast are in the right place, then meet F, who is to be my breast care nurse. She's a jaunty, straightforward Irish woman and I like her. I just wish we'd met in rather different circumstances.

And I can't believe I have cancer.

I call my mother, who swears. My mother never swears. That alone stuns me almost as much as the bombshell diagnosis.

Then I go home, and I hold my son, and I sleep, having decided that I really should have taken the hint when the taxi door frame tried to kill me.

Why?

A few weeks after I was diagnosed with breast cancer in November 2013, I felt like my entire life was becoming a non-stop series of hospital visits, medication side-effects and new therapies and symptoms to tolerate and adjust to. When I saw friends, the conversation would invitably meander around to the state of my boobs, the fact that I was going to lose my long, red hair, or just their understandable curiosity about my condition. I started to feel like I was being swallowed up by this life I'd never asked for, so I asked a breast cancer survivor friend, P, an important question:

“Is there any way to get through all of this without becoming Cancer Girl?”

P said no. There wasn't. She said (very kindly, I might add) that the same thing had happened to her and I'd just have to cope with this chaos taking over my life, at least until the main part of my treatment was over.

So that was it. Like it or not, I had to get used to the idea of being Cancer Girl for the next year and a bit. They say if life gives you lemons....so I decided to see what humour and interest I could extract from this apparently unavoidable situation. There was more of it than you might imagine.

I'm going to put some of it into this blog. Whether it makes you laugh, cry or feel some connection with your own circumstances - and if you're currently living with cancer, my heart goes out to you especially - I hope it does anything but bore you.

I'm not putting my experiences in chronological order, at least not at this point, but rather writing a series of vignettes - little things that fascinated, upset, amused or otherwise struck me during my Life After Diagnosis.  I hope you'll read my words, and find some distraction in them.  At the very least, I hope to illustrate how one person - me, the only person I can speak for - feels about her diagnosis and cancer treatment in general.