Wednesday, 19 March 2014

it's all fun and games, until someone loses a nipple

A couple of weeks ago, I watched the film ‘Dallas Buyers Club’. I went expecting to see a gritty portrayal of a rodeo star’s experience with HIV. I wasn’t expecting to spend most of the film scrunched down in my seat, crying fat, silent tears into my scarf. I cried when the doctor surprised the main character with the news he was a dead man walking, because I remember clearly the shock and denial I felt the moment my doctor issued my death sentence. I cried because I remember thinking - in the midst of the most horrific conversation of my life - “This is why they tell people to sit down for bad news.” If I hadn’t been sitting when he told me, I’d have surely found myself on the floor in a broken heap. 

But the scene that hit me like a sucker-punch to the back of the head was when the protagonist’s young friend, a transvestite, told his father he was HIV positive. When the young man broke the news to his father, he apologised. 

I cried, because when I told my parents, I apologised. 

I had brought the worst kind of fear and pain into their lives. I had betrayed their investment. I had failed them. 

When I was diagnosed with Stage II breast cancer just over two years ago, I told my immediate family first, and then updated my status on Facebook. I don’t know if that was an appropriate way of breaking the news to extended family, friends and acquaintances, but at the time it felt like a very democratic way. It also felt like a very efficient way. For the first few weeks, every time I had to tell someone in person, I cried. I could see my own fear and pain reflected in each pair of eyes I told face to face. Witnessing that distress underscored my own, and filled me with guilt - a guilt for which I often apologised. Sharing the news on Facebook greatly reduced the number of times I had to share my sinister tidings in person. For that, I was grateful. 

But there was another reason I decided to share my ordeal so publicly. 

There is so much talk about ‘raising awareness’. What does that mean? I used to hear that people were doing this or that to ‘raise awareness for cancer’ and think: Well, duh. I am aware of cancer. It’s this disease, right? That old people get. And people who eat rubbish. Or smoke. So what? What else is there to know? My grandma had cancer. She had a wig and spent her last moments of life on so much pain relief that she couldn’t respond to me when I put her hand on my swollen belly and told her about the baby growing inside. Cancer sucks. I know. We all know.

But see, the thing is, I didn’t know jack shit about cancer. I didn’t know healthy people who eat organic food and never smoked get it. I didn’t know that it takes months - years, even - to kick its ass. I didn’t know that it breaks up families and stops you from being able to cuddle your children or that there’s a metric fuck ton of women in the world who have sacrificed one or both of their nipples in their quest to stay alive, and then have new ones tattooed back on. I didn’t know that cancer survivors emerge from their battles crippled by post-traumatic stress disorder and hobbled by their acquiescence to a lifetime of daily pain.

And I figured there were lots of other people out there who were equally unaware.

So I decided to share my ordeal openly, without shame or fear of rejection. I posted updates and photos and test results. I exposed the ugliest parts of my psyche - terror, self-pity, anger - and hopefully, some of the humour and grace with which I tried to approach each challenge, in this blog. I decided to do my bit for raising awareness of cancer by taking people on the journey with me. And then, at some point, I guess I felt I had done as much as I could, because I stopped sharing so much. When, after the second attempt to surgically remove all the cancer, I received the news for a second time that the operation had failed and that my only recourse now was a completion mastectomy, my words and my courage failed me. I stopped sharing. I was given a several-month reprieve from thinking about it; no more surgery could be carried out until my body had had many months to heal from the course of radiotherapy I had after the second op. For a while, I dove headfirst into normality again. I took a break from raising awareness. And now, several months after the successful mastectomy and immediate reconstruction, I find I still don’t want to talk about cancer too much. But it’s there. All the time, it’s there.

This week, the every-so-often Facebook frenzy of 'raising cancer awareness' reared out of the murky pool of look-what-I’m-having-for-dinner and ‘like’-if-you-think-my-kid-should-have-to-clean-his-room posts. In the last couple of years, we’ve seen various ‘games’ that are supposed to ‘raise awareness’: the what-colour-is-your-underwear ‘game’, the where-is-your-handbag (but-when-you-play-it-looks-like-you’re-talking-about-where-you-like-to-have-sex) ‘game’, the put-nothing-but-a-heart-on-your-status ‘game’. This week it’s the turn of the makeup-free-selfie ‘game’. 

Game?

I have been poisoned, cut and burned whilst fighting for my life. I spent two years of my precious life in this fight. My body carries 51 inches of scars from four (soon to be five) operations. My children talk about chemo the way ‘normal’ children talk about Calpol. My five-year-old sometimes goes quiet in the midst of a game, sighs heavily and solemnly declares that “Breast cancer is really annoying, isn’t it?” When she heard her friend’s grandma had been diagnosed with liver cancer, she told me she was making her friend’s mummy a card, “because it’s really sad when your mum gets cancer.”

Each time these stunts have made the rounds, a nauseous anger has bubbled up from my stomach to my chest. I know they are well-intentioned. I know no one means any harm. But cancer isn’t a game if you’ve had it, or if you’ve watched someone you love fight it. Each of these ‘games’ trivialises the very cause they claim to be raising awareness of. Today I read a claim that the purpose of the ‘makeup-free selfie’ was to highlight the loss of confidence cancer patients have when their looks are ravaged by the disease or its treatment.

Uh-huh. Yeah.

Can you imagine checking your Facebook feed and finding it littered with: 

“Here’s a photo of my (unbruised) face to raise awareness of domestic violence! Go me! :-)"
Or “Here’s a photo of my genitals to raise awareness of homophobia! Take that, gay-bashers!” 
Or “Here’s a photo of my child in the bath to raise awareness of paedophilia! Are you brave enough to post a photo of YOUR naked child?”

There are lots of ways of raising awareness of cancers. Donate to research or get involved in fundraising, set up a support network for the family you know at your child’s school who is entrenched in a cancer battle, volunteer your skills at your local hospital’s cancer support centre, use your Facebook status to remind friends to do regular self-exams, check on the friend who fought and won a while back - see if they’re still coping now that their cancer ordeal is old news and they’re ‘cured’, educate your children on making healthy lifestyle choices. 

Just don’t ask me to play ‘games’. Unless it’s the Paralympics. As a breast-amputee.










Friday, 27 July 2012

in remembrance

broken-hearted
broken-winged
flightless and breathless
dizzied and panicked
the heart beats faster in the bloodless chest

the future waits

waits

in a cell

sacrificed
on a hard table
to a blind blade
to shapeless cottons
to bacterial junctions
to a vase of roses and carnations wilting in the summer heat

teeth shudder
in the worried mouth
where words betray their silenced tongue
resurrected follicles
punctuate scarred arms
conversely
perversely
the skin round the eyes grows smoother each day
paper thin skin twitches
in remembrance

granite feet support
leaden legs
lactic acid lingers
each muscular stretch
a delicious pain
a reminder
of the one-toothed bite

the nails in this walking coffin
yellowed
striated
well-hammered
like the man on the cross
who died for my sins

Friday, 20 July 2012

farewell, little lump. no hard feelings, eh?

When I first met with the oncologist, he said I was a good candidate for neo-adjuvant chemo. I asked why, thinking it was something to do with my age or fitness or tumour-type.
"Because you haven't once said you want the tumour out right now."

He was right. It hadn't even really occured to me that it would need to come out. I didn't see it as an invasion or as the enemy. It was just part of me. My cells.

But the day had come to evict the small bundle of cells which threatened to overrun my body, multiplying exponentially until they had colonised my liver, my lungs, my brain and my bones.

I was nervous - frightened, even - of surgery. Of the physical act of being induced into unconsciousness and sliced open. But by the time I had had my last dose of chemotherapy, I was more frightened of not being sliced open. I am sure I felt my tumour recede each cycle around days 7-15. Sometimes I could feel a reduction in its size overnight! But equally, towards the end of each cycle, I was sure I could feel it growing again. From the morning of my last dose of chemo, the clock was ticking. I knew I needed time to recover from the havoc the drugs wreaked on my blood, my immune system and my psyche, but I also knew there would be only a small window of time before the thing started coming back to life.

The morning arrived. I sneaked a little milk into my coffee, against the 'nil by mouth' orders. It was all I could do to resist sneaking a bite of one of the glistening glazed doughnuts my sister-in-law had brought down from London. Unable to completely avoid temptation, I packed two into a plastic pot for later. If ever there was a day for comfort food, this was it.

I kissed each of my girls, arms lingering in sleepy hugs. They were excited to have a day with their beloved auntie, and I was relieved they would be safe and loved in my absence.

The drive to hospital this time was calm and, at 7 a.m., without the usual snarls of traffic on which I could blame our inevitable lateness. It seemed a surreal pinnacle for the months of preparation and suffering we had already endured. A fizz of anticipation bubbled deep inside me, and would erupt in inappropriate laughter many times throughout the day.

The surgical waiting area was busy. The atmosphere reminded me of a locker room; players waited nervously for their coaches to come in and call them to the sterile field. Relatives sat nearby, cheerleading from behind the lines. Lorraine Kelly commentated from the big-screen on the wall.

I was called. Rob and I were led to a patient transport vehicle, which would take me to the other side of the hospital to the breast care unit. "The hospital isn't insured to cover you to walk outside the main building," the driver explained.  We buckled up.

I was the only lady in the breast care unit at half past eight in the morning. I noticed the radiologist, who happens to be married to my surgeon, enter the building, head down and mug in hand. I wondered if she had driven in with her husband this morning, and if so, whether he was similarily entering the surgical unit, mentally preparing for the day ahead.

The first of many chuckles on the day.

I was called through for the first procedure of the day. The nurse introduced me to the radiologist, but she remembered me. The last time I had seen her I was crying and refusing her mammogram. This time I was smiling. I assumed the position - on my left shoulder, right arm raised above my head - and she ran the ultrasound over the lump. My nerves made me forget that sometimes it's more prudent to keep one's thoughts inside one's head; it seemed now was the perfect time to tell her that since she and her husband had both felt me up, it was kind of like we'd had a threesome. Inappropriate, yes. But I preferred to laugh rather than cry. She explained the procedure while I shivered in the cold air (this is just another of the myriad ways they torture breast cancer patients: the machinery needs to be kept cool, but the patient needs to be half naked). I turned my head away and felt the bite of the first needle. Moments later, the tiny doctor seemed to rise up behind me before driving a spike of wire through my skin, through my breast, towards the now-tiny tumour. I was impaled. The six inch tail of wire hanging out of my body was crudely taped down and I was sent for a mammogram to check its position. This wire would guide my surgeon to the lump.

After being impaled like a shish kabob.

Next stop was Nuclear Medicine. The name sent a shiver through me, but the sign outside the unit made me laugh again.


I was taken into the room where I would be injected with radioactive material and nearly fainted when I saw the machine.

"No one told me about that!"

It was a gamma camera. The nurse reassured me that it posed no harm. (Maybe it does. I haven't googled, for once.) I donned a gown and climbed up on the slab. A yellow wristband warning that I would set off geiger counters for the next 48 hours was applied. The second needle of the morning spilled a radioactive fluid under my nipple. The local anaesthetic I'd already had dulled the pain. But I felt sad for my boob. It was never my favourite. It was the runt. The smaller one. The one none of my babies preferred. But it didn't seem to deserve the many offenses it had suffered these last several months. As I massaged my breast to encourage the fluid to move away from the nipple as I had been instructed, I hoped it knew I didn't bear a grudge.

So happy about massaging a breast with half a foot of wire hanging out of it.

The camera's eye slowly descended towards my face. A moment of claustrophobic panic siezed my gut before I was distracted by the expanding star on the computer screen nearby. The star was the radioactivity in my breast, captured in real time riding the waves of my lymphatic system. With any luck, the particles would wash up on my sentinel lymph node. Twenty minutes of not-very-sensuous breast massage later, the sentinel node lit up like a twinkly little satellite.

Back to surgical admissions, radioactive and bionic. We were called to meet with the anaesthetist. No, I'm not pregnant. No, I don't have any allergies. No, I've never had a problem with an anaesthetic before. I meant to ask...could the surgeon take off this little mole in my armpit while he's digging around in there? He might have, if you'd asked earlier. But he can't do it without consent...you might complain afterwards that you really loved that mole.

My impression of the guy who'd put me to sleep was pretty good. He had bad breath, but I could tell he was quietly confident and careful. And human.
Back to the waiting area for a few more minutes. Tummy rumbling now - hadn't eaten for 12 hours. I leafed disinterestedly through a fashion magazine. One ad caught my eye - chemo chic seems to be in this year.


Rob and I followed another nurse up the corridor (not before I went for one last wee - I didn't want to wet myself on the operating table). I could feel my blood pressure escalating. The walls closed in on my eardrums. The corridor lengthened and narrowed under my feet. We stopped in front of glass doors which slid open with a whoosh.

"Here's the end of the line."

I turned to Rob. We embraced - not some wimpy half-hearted hug, but the full body no daylight kind - and exchanged sincere I-love-yous. I walked through the doors and turned back as they drew closed to say it reminded me of saying goodbye at the airport. I don't know if he heard me.

"So how old are your girls?"

Not for the first time during this fiasco, telling someone my daughters' ages broke me open at the eyeballs. But for the first time on this day, tears spilled forth.

Just like what always happens at the airport, my departure gate was the one furthest from the sliding doors. A chair waited for me outside Theatre 10. The nurse and I sat for a few moments before they were ready for me to enter. I walked into the large operating theatre, wondering if it was the same  one in which my eldest daughter had been born. I climbed onto the narrow table. I noticed four or five begowned, bemasked nurses gliding gracefully around the room, readying instruments, writing my name and details of the operation on the board on the wall, scrubbing wrists and fingers in the sink in the corner. A very pretty, smiling nurse stuck ECG suckers to my chest and back and fastened a cuff around my upper arm. I was shocked to see my blood pressure - 127/83! My bp has never been anywhere near that high. My pulse was 126 bpm. I cracked a joke about it being as good as a workout.

The anaesthetist with bad breath appeared and took my left hand in his. He remarked on the still lurid bruise in the crook of my arm, the result of a health care assistant's clumsy attempt to draw blood ten days before. His needle deftly and painlessly entered a vein on the back of my hand.

"Lie back. You're going to feel a bit fuzzy in a moment." His drug whispered through my bloodstream, and I was asleep.

                                 ------------------------------------------------------------------

I choked on thick air and coughed. That wire in my boob hurt so much. My hand rose to my face and found soft plastic. I pulled the mask away and spluttered again and winced. I realised it was over. It was over and I had missed it. I had been left out. They hadn't let me watch and my surgeon had never turned up to take the lump out. I wondered who had done it. I shivered and asked for more blankets. I felt sad that I had missed it.

Someone spoke to me, but I can't remember what they said. I watched an old man, still sleeping, roll through the recovery room. There was a space for me on the ward, but I needed to move off the operating trolley onto a bed. Somehow, wanting to show how okay I was, I pushed myself up to a sitting position and transferred myself across the gap between my trolley and the bed. I was taken down to the ward. Rob was there. I ate one of the doughnuts I had packed that morning, posted a reassuring 'I'm alive' to Facebook and emailed my mother.

Later, I walked to the bathroom, lifted my gown and looked at my insulted breast. The bandage was smaller than I had expected. And my breast was a bright greeny-blue. The final needle of the day had injected dye beneath my nipple, a dye which travelled through the channels of the breast to stain the lymph node most likely to be cancerous, enabling the surgeon to identify it and cut it out.



I felt okay.




Tuesday, 17 July 2012

i survived chemo and saved my lymph nodes

Just over a month ago I had my third and final dose of the taxing Tax. Docetaxel was pretty hardcore stuff; the first dose landed me in hospital with uncontrollable pain. Doses two and three were reduced to 80%. I was again unhappy with the dose reductions, in case they reduced the drug's efficacy, but kind of relieved in a way, as hopefully my risk for further complications brought on by this intense poison will also be reduced. Even with the dose reductions, I suffered some unpleasant side effects - feet that felt burnt, then peeled in sheets for weeks; twitching eyelids; yellowed and blackened fingernails; hypersensitivity to noise and light; impaired cognitive function and short-term memory problems and muscles that still ache as though I've done a heavy workout in the gym. But overall, four weeks on, I'm surprised and amazed by how good I feel. The human body's capacity for healing itself is absolutely incredible.

Yesterday, I was admitted to hospital for my surgery. I can proudly say that I was the first person at my hospital to have this particular surgery.

In February, my lymph node was biopsied and tested positive for cancer. Traditionally, this would automatically mean all my lymph nodes were removed along with the offending lump. Up to 70% of women who undergo this procedure - axillary node clearance - will go on to suffer problems with lymphoedema, frozen shoulder, cording and/or loss of sensation and strength in the affected arm. As an active woman, as a mother of young children, this procedure scared me almost as much as the cancer. Women end up permanently disabled. I cook, sew, garden, hammer nails into walls, move heavy furniture around, have cats and still carry my children in my arms; how was I to 'protect' my right hand and arm for the rest of my life? Something as seemingly innocent as a hangnail could trigger the dreaded lymphoedema.

Thankfully, I came across an article about a study that was published only last year. This practice-changing study found that for about 20% of women diagnosed with breast cancer (who have a small lump, positive but non-palpable lymph nodes, and who are likely to have further treatment such as radiotherapy to the armpit, endocrine therapy or chemotherapy) it was just as safe to NOT remove all the lymph nodes. In fact, in this particular study, the women who only had a sentinel node biopsy actually had a very slightly better prognosis. I took this study to my surgeon. He acknowledged it, but made it clear that the standard of care was still to perform a full node clearance on any node-positive patient.

However.

After lengthy discussion, he offered me an alternative. I could do chemotherapy first and see if it 'cured' my enlarged node. If, by the end of my chemo treatments, the node looked normal on ultrasound scan, they might agree to perform a sentinel node biopsy rather than a full clearance.

The sentinel node biopsy seeks to identify the first lymph node the cancer cells might drain to, with the idea being that if that node is free of cancer, the other nodes also should be. The surgery is much less invasive and carries a far lower risk of morbidity.

I agreed to this deal. I thought if nothing else, having my chemo neo-adjuvantly (before surgery) would buy me a few more months with a healthy, non-compromised arm. It would give me time to finish the many DIY projects around the house, with the further benefit of being able to see if the chemo drugs were having any effect on my tumour. And it worked on both counts. I got to see my lump shrink by half, and after only two treatments my lymph nodes looked normal.

A week and a half ago I met again with the surgeon. I would be the first person at my hospital with a lymph node that tested positive to be offered the sentinel node biopsy.

It pays to be a stroppy patient.

Thursday, 7 June 2012

bad dreams

I'm a pretty good sleeper, on the whole. I haven't always been - for years I laid awake in bed each night, sometimes for hours, waiting for the curtain of somnolence to fall across my eyelids.

Whilst pregnant with my third daughter, I began listening to a relaxation CD at bedtime. Perhaps the strain of being pregnant for a third time in four years was the real cause, but I'm pretty sure those ten minutes I was guided by a soothing voice to "...three...two...one...relaaax..." helped me on my way to gentle rest.

Sleep problems are very common amongst people with cancer - stress and anxiety coupled with side effects of medications conspire to steal zzzzzzzzz's when they are most needed. Fortunately, I have rarely experienced disrupted sleep, for not long after I was diagnosed, I was given another relaxation CD by a friend's mother (I encourage you to check out her website), which has helped me to find sleep quickly and easily most nights.

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Last weekend we took the kids to a music festival, where we camped for three nights. Cold overnight temperatures, the throbbing cadence of techno music played until the wee hours, a 2 a.m. gig by the (excellent) band who were camping next to us, and the unfortunate placement of my sleeping bag over a tree root all contributed to a couple of restless nights for me. This in itself didn't bother me - one doesn't expect to get a good night's sleep when camping at a festival.

But there was a downside to all the waking up I did. My dreams stayed with me each time I awoke. And some of them were more like nightmares.

One was particularly disturbing, and I haven't been able to shake its images from my brain and heart.

In the dream, I was sleeping and I awoke. Near my body was a clutch of eggs I had laid. There were perhaps ten brown eggs, and some of them had cracked open. Nestled in the jagged shells, glistening and almost translucent, were tiny human babies. Their bird-like eyes were closed, and I knew they were dead.

--------------------------------------------------------------------------------------------------------------------

I knew right away what had prompted this sad dream.

Chemotherapy has stolen my fertility.

It has stolen a lot of my hair. It is threatening to take my fingernails and toenails. It plucks out my eyelashes and eyebrows when I'm not looking and meanly sprinkles them into my eyes. Chemo has hidden my waistline under a layer of fat, robbed me of muscle, pilfered my tastebuds and purloined the light from my eyes. My good humour, motivation and mental strength are slowly but surely being misappropriated.  It has embezzled months of my life.

But the loss I mourn most keenly is that of my fertility.

I knew from the outset that it would happen. A few weeks into treatment, my daughter told me her friend's mother - who is a friend of mine - was expecting a baby. News that would have normally filled me with joy saw me collapsing instead into a sobbing, grief-stricken heap.

We weren't planning to have any more babies. (Although, truth be told, I think many if not most women's wombs harbour a sly yearning for 'another baby' throughout and perhaps even beyond the childbearing years. And if I'm really honest, dancing quietly in the shadows of my determination that our family was complete was a flicker of hope that one day we would have more money, a bigger house, a bigger car and space for 'just one more'.)

But it's not the loss of potential children that troubles me so. It is the loss of what makes me vital, womanly, alive. Women are said to be at their peak in their 30s. Before finding the lump, I certainly felt that I was entering that stage. And now, thanks to chemo, it is as though someone pressed the fast forward button, hurling me into the beginnings of old age. The hormone that made me so fertile - three of my babies were conceived at first try - that gave me thick, glossy hair, smooth skin, strong bones, mental agility and a positive outlook is now my enemy.

I don't want people (women) to say to me: "But you're lucky! Periods are such a pain!" Yeah, sometimes they are. Snow can be a pain. But would you banish winter from the calendar?

I like being a woman. I liked having a menstrual cycle. I miss the seasons of my femininity as I would miss the trees shedding their leaves in the autumn if I moved to the tropics.

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The last few weeks have been hard. I have felt a shift in my mindset. I feel unsociable, sad and angry. What's prompted it? I'm not sure. It could be any of lots of things:
  • The extremely debilitating side effects I experienced during my first dose of Docetaxel.
  • The change in my appearance that has finally become apparent - especially the sad, worried look that now sits permanently on my face.
  • Fatigue.
  • The almost constant discomfort of one sort or another.
  • Maybe this is simply another side effect - reduction in oestrogen levels can cause depression.
  • I'm fed up with not being able to achieve anything or complete any task or be of use to anyone.
  • A growing realisation that this is actually happening to me. That this is my new forever.
  • The fact that when I consider spending money, I cost it out in terms of how many years I may have to enjoy whatever it is I'm buying. And I weigh up whether - if I live, say, for two years or four years - it represents value for money or if I should go without and leave that money for my family to use when I am gone.
  • Worry that the dose reductions I have had will increase my chances of recurrence. Worry that the seventh dose the oncologist threatened will become reality. Worry that if I refuse the seventh dose, and then suffer a recurrence, that I will be responsible for it. Worry that the time I bought with an intact, healthy arm by having chemo before surgery is running out. Worry that radiotherapy is carcinogenic. Worry that Tamoxifen is carcinogenic. And that it makes women gain weight, go off sex, become less intelligent, achy and stiff and sore and grumpy and sad.
Ugh. I can't even bring myself to finish this list. It's all too depressing and I've been working on this post for three hours now and I've had enough. It's not even very well-written.

I don't like feeling that the best is behind me.




Saturday, 21 April 2012

being careful

One of my most oft-uttered phrases as a mother is 'Be careful.'

I say it when they're climbing a fence, or climbing a tree. When they are mucking about on the floor with each other. When they get out of the car. When they run ahead of me up the path. When they climb up on a chair to fill a glass from the tap, and when they carry that full glass across the kitchen to the table.

Why do I say it? What does it mean?

I've noticed that mothers say it a lot more than fathers. Why? Do mothers worry more? Are they more protective, more concerned?

I have asked myself these questions many, many times over the years.

In recent times, I have come to think it is a useless, pointless thing to say. I wonder if they even hear me. I certainly don't think the words inspire a change in their behaviour; they do not hear me and thusly adjust their bodies' forward motion in avoidance of danger.

In fact, I have come to see the words as suggestive. As undermining. Harmful.

I used to believe that I say 'Be careful' to verbalise my own love and concern. I've realised that I actually weild these words as a talisman against danger, disappointment and loss. It's a mantra I sing to ward off any evil that may befall these small ones I love. It's a get-out-of-jail-free card. If my children do indeed get into trouble, I am absolved of guilt because I TOLD THEM TO BE CAREFUL! The trouble won't be a reflection on my failing as a parent, but rather on their failing to take heed.

Telling my children to be careful suggests their world is dangerous and that they are ill-equipped to deal with it. It suggests I don't believe in them. It sets them up to fail.

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

And yet.

I know they are important words.

And that they can co-exist with fearlessness.

I am not a fearful person. I don't class myself as a worrier. And yet I am careful. I anticipate danger and try to avoid it. I calculate risk, researching and analysing before committing.

I was careful.

I breastfed four children - mostly for their own benefit, but also in the knowledge I was protecting myself, too. I ate healthily. I didn't allow myself to grow fat and sedentary. I avoided chemicals when possible. I lived without a microwave, without fake tan, without breast implants, without red meat, without margarine, without bitterness over past disappointments and without the Pill.

And yet.

I find myself in danger.

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

The last three months have taught me the most important meaning and the value of the words 'Be careful.' It is not that the words are wrong. It is the circumstances under which we deliver them that are wrong. It is not in avoidance of danger that we should be being careful. It is with regards to each other.

Some will argue semantics here. Some will say my chemo-drug-addled brain is confusing usage and meandering beyond the realms of cogency.

If we take 'careful' as meaning 'full of care', then to be careful is to be full of care. Yes?

And that is what we should be.

In the last three months, I have been swaddled in the most awe-inspiring blanket of care imaginable. I have been loved and looked after in a way I have never before experienced. Rarely does a day pass without a card in the post, a gift, a cooked meal, an email, a shoulder rub, a phone call, an invitation...some evidence that someone is thinking of me and trying to ease some of the burden on my shoulders and in my heart. Women I have never met in person have sent gifts for my children. The mother of my first boyfriend - a woman I haven't seen or spoken to in fifteen years - sent a card last week. Men - one I've known half my life and one I've known for a year - have come to my home to help complete DIY projects and mend my broken car. A lady in the village who heard about my illness - a woman who fought this disease eight years ago herself - popped in to offer to drive me to a local complimentary therapies centre. Mothers from school whom I have never spoken to have sent beautiful home-cooked meals. Mothers from school with whom I have laughed and cried have welcomed my girls to their homes in the afternoons to save me doing the hour and a half school run. Our parents have sent gifts and money to help with the escalating costs of travel to hospital. I've opened the most thoughtful parcels containing pyjamas, eyebrow pencil, hand-tempered chocolate, hand-mixed healing oils and handmade healing jewelery.  People have emerged from my past to tell me they love me, that they are thinking of me, that they are praying for me. People who don't even really know me have done the same.

I am certain that it is this care that is carrying me through the storm right now. I will never be able to make people understand how very much every gesture means.

But I am left wondering: why does it take the spectre of death to engender this level of care for one another? We all need to be cared for, all of the time. Every person I know deserves this same outpouring of love.

How different the world would feel if everyone felt as cared for as I do now.

I am sure I will continue to utter the dreaded phrase 'Be careful' when my children dance in front of danger.

But I promise I will also whisper it when they gaze on other people's sad and lonely faces.

Be careful.

Go out into this world, and be full of care for every person you meet.




Wednesday, 21 March 2012

one-third of the way there

Chemo number two went without a hitch. I sneaked a peak at my blood test results and swelled with pride at the sturdiness of my little red and white soldiers. My liver is happy and my kidneys are coping well.

The bad news is they decided to reduce my dose.

My little holiday in Emergency Admissions suggested to my team that my chemo dose was too high, and my sore spleen finally convinced them to spare me the Neulasta injection this time (spleen rupture is one of the rare side effects). So they took a cautious approach and only prescribed me 80% of my previous dose of FEC 100.

I'm not happy about this.

Other than the neutropenia, I coped well with my first chemo dose. I was certain that most of my discomfort was down to the injection and the cold I was fighting rather than the chemo itself. This cycle - I'm currently on day 6 - has been embarrassingly easy. Some very minor digestive niggles (enough to notice but nothing that would interrupt normal service), a touch of mild heartburn, an 'off' taste in my mouth and tiredness have been the extent of my suffering this time. On day 2, I spent the day in Plymouth enjoying St. Patrick's Day; on day 4, I spent five hours working on my allotment - slowly, yes, but surely working the earth and drinking in the spring sunshine.

I don't want an easy time of this. I want it to work. That's it. If I have to suffer, so be it. I don't want to be back in these shoes in two years' time because my dose was lowered. Dosage seems to be a little haphazard, based mostly on your height and weight. I understand they can do nothing more than play with the numbers, hoping for the best possible outcome. But this study scares me a little: it references another study that found when dosage was dropped to 80% the 'cure' rate dropped by as much as 50%!

My plan is to stay healthy for the rest of this cycle, then ask for my dose to be upped again.

C'mon, neutrophils...don't let me down.