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.

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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.

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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.

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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.

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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.

Tuesday, 6 March 2012

neutropenic sepsis

I've just come home from a three-day stay in hospital.

The sore throat, cough, and general achy malaise caught up with me on Day 10.

I had been wrestling with a headache, too, from around Day 8. It was there when I woke up in the morning - something akin to a hangover headache - so I took a paracetamol. Just one. I was keen to get off all meds, to give my poor body a break, so I only took one. It seemed to work. But the headache was back that evening. And it was there on Day 9, morning an evening. Meanwhile, the sore throat was getting more unbearable and on Day 9, Friday, I noticed some tiny white patches on the back of my tongue - almost certainly the beginnings of oral thrush, a common chemo side effect. For that, I phoned my GP and requested a prescription for Nystatin oral anti-fungal drops and some anti-bacterial mouthwash. No problem. Picked it up on my way home from the school run.

Friday was another in a string of beautiful days, and when I arrived at school to pick up my eldest daughter I was feeling good. One of the parents from my daughter's class gifted me with a gorgeous bouquet of English cottage garden flowers and I collected our dinner - kindly made by another parent for us - from the Parents' Room. My heart was singing. I can do this. I can get through this. The sun is shining and people care about us and we will manage.

By the time I got home I was tired. That night I slept on the sofa, having taken another paracetamol at midnight to try to soothe my aching head and raging throat. I didn't sleep well.

In the morning I could hardly raise my head from the cushion, it hurt so much. Rob brought me another paracetamol and some water. A few minutes later I got up but soon returned to the sofa; I really wasn't feeling very good.

I Googled strep throat. Symptoms: sore throat, fever, headache.... I had all three. I asked Rob to phone the duty doctor so we could take advice. Today was Day 10 - right in the middle of my low-immunity period - and I was starting to feel concerned about how bad I was feeling. The doctor on call asked me to come in to the community hospital for assessment.

I had already packed and stashed an overnight bag in the boot of my car. I had read on a 'Surviving Chemo' tips page that you should pack a bag in advance in case of an emergency admission. The 20-minute journey to the doctor's wasn't pleasant. The three-year-old had a very rare meltdown and literally screamed the whole way. I cried in pain.

We waited over an hour. That didn't seem right. I had to lie down on the waiting area chairs. My whole body was hurting; my head felt as though it might crack open and spill its contents across the polished floor. Finally I was called.

The very sympathetic duty doctor carefully took my history and examined me. I had a raised temp, but it was only 37.2. I had an inflamed throat, but it didn't look infected. I had a cough that was wearing me out, but my lungs sounded clear. The glands in my throat were swollen, but only just. It didn't seem serious.

So why have I not got the energy to even sit upright?

She phoned the oncology unit, who asked me to come in via A&E. Just to be sure.

We made the 15-minute journey, things a bit calmer in the backseat. I felt awful. Really awful. My head. Hurt. So. Much.

We arrived at 1 p.m. Another 20-minute wait in A&E. My paranoia about my low immunity found me sitting in the children's play area - the only part of the waiting area with no sick people in it. I was called through. A youngish Indian lady - I don't know if she was a nurse or a junior doctor - led me to a side room and asked me to lay on a trolley. The plan was to start intraveneous antibiotics, even without a diagnosis. I was presenting with mild symptoms of neutropenic sepsis - infection with a low white blood cell count - on Day 10 of my chemotherapy cycle. Protocol - derived from the finding that mortality rates dropped from 60% to 25% when appropriate IV antibiotic therapy was started within 60 minutes - dictated that I was treated immediately.

I lay on the trolley, moaning and miserable. My three little girls watched, each with a varying level of interest. The seven-year-old knew this was serious and scary and watched with wide, shining eyes. The five-year-old never stopped smiling in her joyful way, and often interrupted her play to hold my hand and will me to feel better. The three-year-old cheerfully planted kisses on my fingers through the side-rails of the trolley. We have been honest with them from the start, and there had been no time to find someone else to look after them. This is our life now.

Once several vials of blood had been taken and the antibiotics were going in my cannulated right arm, more blood was drawn from the PICC line in my left arm. Blood from my body and blood from my PICC line both had to be tested to try to find the source of infection. Finally, I was given some IV pain relief for the intense headache and body aches.

I was being admitted. A bed in a private side room with en-suite facilities was found in the Emergency Admissions Unit...as I later overheard a nurse explain to her colleague, I "wasn't infectious...", I was "neutropenic". Basically, I had no immunity. I needed to be protected from germs.

It turns out my neutrophil (white cell) count was .3. I was told by the consultant that normal, healthy adults' neutrophil count is usually between 2.5 to 7.0. So yeah. This was serious.

I was on IV antibiotics and litres and litres of IV fluid for three days. I've been discharged with another 5 days' worth of oral ABs.

I was in good spirits during my stay in hospital. Since I got home I've been feeling low - I think it's hit me how serious this was. And that I'm no longer a healthy person.


Wednesday, 29 February 2012

side effects

Day 1. FEC treatment 1. Slight 'taste' during administration of F. Slight tingling in nose during administration of C. Ate frozen orange juice chips and half an egg sandwich during infusions. Felt slightly woozy/heady after treatment. Good appetite afterwards. At least two litres of water and other fluids taken. Took all meds on time and felt ok overall. Slept well.

Day 2. Took meds as prescribed. One or two fleeting moments of vague nausea, quickly averted by eating something. Appetite better than usual; ate very healthily throughout day. High fluid intake. Feeling good. Heart fluttering when laying on left side. Some palpitations/heart thumping through the day. Neulasta injection at 9pm. Slept well.

Day 3. Feeling a bit 'hung over' on waking. Slower to get moving. Decide to cancel plans to go out for a walk as not feeling much energy, but after eating change mind again and head out for river walk. Short walk and play in river with kids. Pub meal afterwards with friends. Hungry and good appetite, but tummyache is more pronounced now. Taste buds somewhat affected - some foods taste bland. By end of meal, feeling tired and a bit done in. PICC arm a bit sore. Glad to head home. Slept well.

Day 4. Meds as prescribed. Feeling pretty good. Tummyache/distended belly. Painted half my bedroom and hung a shelf. Heart still thumping occasionally. Skin on face dry and peeling. Ate and drank well throughout day. Slept well.

Day 5. Child-free day! Felt ok on waking. Baked banana bread, cleaned kitchen and did two loads of laundry. Two hours' of filming with B. Made potato and leek soup. Stroll to allotment (purple sprouting broccoli is doing well!). Late evening develop fluey aches all over body. Left upper abdomen very tender and sore. Go to bed but have trouble sleeping. After waking several times, get up at 2:30 a.m. and take two ibuprofen for pain. Manage to sleep till 7 a.m.

Day 6. Lay on sofa and watch dvd with three-year-old. Feeling very lacklustre. Collect five-year-old from school at 12:20 and go over to friend's house. Lay down on sofa with five-year-old, who is complaining of sore tummy. My own tummy is very, very sore and tender. Still have a good appetite, but totally lethargic. Lay on sofa for three hours, catnapping. Pain in PICC arm/chest. Feeling tearful and tired. Spleen area so tender. Call unit to ask about spleen pain. Told to take paracetamol and ring back in the morning if still bad. Slept ok.

Day 7. Slow to get going in the morning, but not feeling so bad. Lethargic and moderately fatigued. Sore throat. District nurse at 11:30 a.m. to flush PICC line and change dressing. Line working fine but crusted with dried blood and DN pulls it out by .8cm when cleaning it. Arm and chest quite sore before and after. Dry cough not helping. Site bleeds after new dressing applied and sore. Spleen still tender but not as bad as yesterday. Spent an hour in the park after school run...beautiful, warm day. Arm more sore after rescuing child from various mis-haps. Hot water bottle on arm/chest all afternoon/evening. Still have a good appetite and drinking plenty of water, peppermint tea and green tea and honey with lemon.

Saturday, 25 February 2012

Day 3

Day 3 and I'm not feeling too bad. In fact, I've felt so well that I wondered aloud last night if I'd been given a placebo. Two or three moments of feeling the tiniest hint of a delicate tummy - quickly staved off by eating something - has been about the worst of my side effects so far. This morning I woke up, after only about 5 hours' sleep, and tried to work out if I felt bad. Hard to tell, as I'm not a morning person anyway and never leap out of bed full of the joys of the new day.
Day 2 - modelling my Buff Headwear, kindly given to me by a friend.


Last night, Rob gave me my Neulasta injection. Not before I googled it, of course. Spleen rupture? Acute respiratory distress? Eeek. We phoned the chemo ward to check if I really needed to take it. The very understanding nurse reassured us that it was prescribed selectively only to patients who were felt would benefit. Neulasta works alongside chemo to rebuild red and white blood cell counts, with a view to reducing the chance of neutropenic sepsis (very serious infection that will put a patient in hospital on IV antibiotics). I believe I have been prescribed this because I have small children, and thus a higher risk of coming into contact with germs that could make me very ill when my immunity reaches its lowest point. Each injection costs in the region of £300 - £1,000 according to the internet. So I had to accept that the risks in this case would be outweighed by the benefits. So far, my spleen seems happy and I'm breathing normally. One of the most common side effects, affecting perhaps 30% of people who take Neulasta, is bone pain. So far, I have not experienced that either.

Why am I having such an easy time? I've been trying to figure it out. Perhaps because I really am a pretty healthy person. And I've been trying to eat even more healthily for the last few weeks in preparation - green smoothies, gallons of filtered water, nine portions of fruit and veg per day and lots of 'healing' foods. Maybe because I didn't expect to suffer too much. I have been more worried about the long-reaching effects of chemotherapy - the potential for heart damage, reduced cognitive function, liver damage - than of the short term ones. I'm getting a lot of support and that must make a difference to my stress levels. And I'm trying to keep positive and see the humour in the whole thing.

Well, it's only Day 3. Still a long way to go. But I'm enjoying each good day while it lasts.

Thursday, 23 February 2012

starting treatment

What a wild month. Days of feeling like this is the worst thing that could possibly happen to me. Days of thinking this is going to be the most amazing year of my life. Swimming in the depths of utter despair. The blackest of times. Understanding what it is like to not be able to get out of bed in the morning. The tears, how they have fallen. Hugs. Hugs like no other hugs I've received. I haven't been able to feel my own mother's arms around me, but the arms of many mothers have held me this month. I have sobbed into their necks, wetted their hair with my sadness. And though my dad is too far away to make it all better, I have felt the strength and protection in the arms of the fathers I know here.

When you stare Death in his beady little eyes, you have two choices: curl up and give up, or Live. I have chosen the latter.

Today marked the start of treatment. I have opted to have neo-adjuvant chemotherapy. Three cycles of FEC followed by three cycles of docetaxel. You can read about this regime here. This will be followed by surgery and then radiation and then five years of Tamoxifen. The reason I have opted to have chemo first is that there is a chance it could eradicate the cancer cells in my lymph nodes, reducing the chance that I will need to have all my axillary lymph nodes removed. This in turn will lower my chance of further life-long complications in the use of my dominant arm.

Today's visit to the hospital involved, firstly, the insertion of a PICC line. My nurse was very chatty but not dippy, which I appreciated. I respect intelligence and she came across as very capable indeed. Aside from having to hold my head in an odd position and wave my arm about up in the air, it went without a hitch, and a chest x-ray confirmed the end of the line was in the right place. Phew!

We made our way back up the chemo unit, where my cold cap was chilling like a good chablis. Well, the cap was hot pink, so maybe it was more like a cheap Pinot. Anyway, the nurse helped me put it on. I can tell you one thing: It is most definitely NOT the new black! I looked like the biggest dork on the English Riviera, but it was worth it just for the laughs. The first 20 minutes were pretty uncomfortable. More of an ache than outright cold. But the worst bit was the chin strap (the cap looks very similar to a riding hat, but must be very snug-fitting to work). This strap pulled my lower jaw out of its usual position and I spent the whole three hours trying to relieve the pressure by tugging on it with my right hand.

After I'd cooled for about 40 minutes, I was taken to my private treatment room. As soon as I entered this 'safe' space, my fears bubbled to the surface. My chin wobbled and my body shook uncontrollably under the fluffy blanket I'd brought from home. I was scared. Terrified. I felt like I was facing my own execution and needed to consider for one last moment whether this was the right choice. The nurse held one of my hands and Rob held the other, and I focused on all the love and support that have been coming my way for the last few weeks. I breathed, and I gathered myself, and said I was ready.

My particular chemo cocktail requires the nurse to push the syringes full of drugs manually into my PICC line, so I got one-on-one attention the whole time. First she flushed the line, then gave me an anti-sickness drug. Epirubicin, a dark red fluid was next on the menu. This is a very harsh drug. If it accidentally escapes from the vein it damages tissues. It has to be pushed in alongside saline to dilute it, so this infusion took the longest. Next came my fluorouracil. Finally, the cyclophosphamide. This one gave me a slight tingling feeling in my nose, like I'd eaten wasabi, so not entirely unpleasant.

I had to sit with the freezer on my head for another hour. The nurse took this time to explain all the pills and gear I was taking home. Lovely husband gets to give me an injection tomorrow. That one is meant to help my blood count recover faster. I've got two anti-sickness drugs and a steroid to take for three days. This is more drugs than I have put in my body for the whole of my life so far! I also have a bag of supplies the district nurse can use to flush my line out each week and to take bloods just before my next chemo in three weeks.

It was a relief to be finished. I dried the melting ice from my hair and gathered my things. We left. I felt slightly giddy, but not bad. My wee was indeed red! But I felt ok. We collected the girls and came home. I told my two bigger girls a bedtime story about an evil witch who cast a spell on a mummy because the witch was angry that the mummy was so happy. The spell caused bad cells to grow in the mummy's boob, so she had to go to hospital to have poisons put into her body to kill the bad cells. The poison also killed some of the good cells, so her hair fell out and she felt tired and sick and grumpy. But soon, the poison did its job and killed the bad cells, and after a little while, the mummy was better and could go back to being a happy mummy.

I think they understood.

Thursday, 26 January 2012

dear mom

How are you?

I had my appt today, but the biopsy I had last week was inconclusive. They found neither cancer cells nor lymph cells in what was meant to be my lymph node. Instead they found breast tissue, which must be odd as the doctor said he'd never had that result. He said it wasn't exactly worrying, but it was unusual enough to warrant further investigation. So I have to go back again on Friday for a larger "core biopsy" sample to be taken from the lymph node area and will get those results next Wednesday. So we do not yet know if it has spread beyond the small tumour yet and my cancer still has not been staged. I do have a date for surgery, which is Feb 10th. He said I should be staying overnight, then able to go home the next day. This could be brought forward to feb 3 or 6 if there is a cancellation in my surgeon's schedule. About 3 weeks after surgery I should start radiotherapy, which will last 6-7 weeks, every day except weekends. The main side effects of that seem to be extreme tiredness (which increases the further along in treatment you are) and skin burns like sunburn. They don't know at this stage whether they will advise chemo. I'm praying not, but I'm also wondering whether I should throw everything they've got at this. Luckily, because mine is hormone receptive, I can take Tamoxifen for 5 years to reduce risk of recurrence. Ladies whose breast cancer is not hormone receptive don't have that option. I will enter the menopause. I can't say that I'm happy about that, but our family is complete so I can accept it, and I doubt I would risk having any more children after this anyway.

I'm pretty upset about this, as obviously it means we're in limbo for another week. And I have to have another unpleasant procedure. But better to be sure, I guess. Rob is taking Friday morning off to go with me.

I want you to know that I am being very well supported here. I have a wonderful circle of friends who have jumped straight into action: making us meals, watching the kids so I can go to appts, letting me cry on their shoulders. I also have come to know several ladies who have been through this - a few from my hospital - so I have people to talk to who understand what I'm going through.

I will obviously keep you updated with every new bit of info I have.

The Valentine's package came today. I've put it away till the day.

I love you, and I thank you for your love and prayers. I am sorry that I am bringing this worry into your life at a time that you should be focused on getting yourself well. The prognosis for my stage is very good, though, and I'm strong and otherwise healthy and have so much support to get through it.

Love,

Carrie xo

Sunday, 22 January 2012

the good stuff

Fear and anger aren't really my style.

I don't really 'do' hopeless.

I woke up this morning, and before I had lifted my head from the pillow, before I had opened my eyes, I felt the tears sliding out of them. I must have made a noise, because Rob came and sat on the bed next to me.

It was the moment where you remember it wasn't all a nightmare, a terrible dream to be shuddered at then hopefully forgotten in the thin warmth of filtered sunlight.

I got up. Greeted my babies with a cheerful voice. Brushed my teeth. Padded downstairs. And then a second remembrance knocked the pitiful wind out of my sails.

People with cancer are desperate to find some aspect of the illness they can control. Didn't take me long to learn that. I think that's why we have so much interest in diet.

I've said it for years about feeding children: what children eat and how it comes out are about the only two things they can really control. Why do you think there are so many battles over broccoli?

Well, the same is true for people with cancer. What we eat is one of the only ways we can control what is going on with our bodies.

Anyway, I was on the stairs, wasn't I? I could smell the coffee Rob had brewed. And I remembered I had decided to cut coffee out immediately.

I've done it before. Caffeine is very bad when you're trying to conceive and in early pregnancy. I have many months - years even - of hot water with lemon under my belt.

But what a crappy thing to remember before I had even properly woken up. So hot water with lemon it was.

While I sipped the bitter start to my day, I tried to squeeze a little positivity out of myself. Began to compile a list of the good stuff.

The Good Stuff includes:

:: what love feels like - how many times in our lives are we told we are loved and cherished by virtually everyone we know, simultaneously? My friends' and loved ones' response to this has overwhelmed me, and I suspect has altered forever my own view of myself for the better.

:: a chance to evaluate - I've spent many hours this week looking hard at my own life choices. And I feel pretty satisfied. I've done some stupid, ill-advised things, but I do feel happy with my journey. I have lived! I've loved hard and followed my heart and I've chased dreams and overcome crazy challenges.

:: more empathy - for people who are suffering, who are frightened, who feel powerless, and especially for those who feel alone.

:: my schedule is free - my lump couldn't have timed its appearance better. The end of June to the middle of January is my busy period. One birthday after another. New classes to get to know at school. Halloween. Advent Fayre. Christmas. Another birthday. And what happy, care-free memories we made last year! There's space on my calender for surgery, radiotherapy and chemotherapy now. Cancer, you've got six whole months to bugger off.

:: a get out of jail free card - I'm one of those women who walk around with a little yoke of guilt mizzling round their necks: I haven't replied to that email, I haven't posted the thank-you cards, I haven't done puzzles with the baby today, I haven't finished painting the front hall.... Now I'm free! No one's going to expect me to do much of anything other than survive for a while. I intend to make the most of that.

:: a strengthening of bonds - so far, my husband and I have cleaved to one another. What an opportunity to see how much we really mean to each other. And how much we really need each other.

:: my beautiful body - I stood naked before a full-length mirror today and decided my body would still be beautiful in its disfigurement. How wonderful my healthy body is! It is strong and lovely and its flaws stand as testament to the challenges it has faced and conquered before.

There will be more good stuff. I'll add it when I think of it.

staying up late

::reading
::worrying
::researching
::obsessing
::imagining
::crying
::dreading
::planning
::searching
::breathing
::praying

Saturday, 21 January 2012

fearing the worst. or, how you react to the news you may be dying when you are a little OCD

To-do list:
  • get all those digital photos on my hard-drive printed off
  • fill up all the empty entries in the baby books
  • make a quilt for each of the girls out of the outgrown baby clothes
  • make sure there are no emails, texts, facebook messages, or old love letters that might upset anyone
  • find out if my life insurance includes critical illness cover
  • find out if my union offers any death benefits
  • cancel our hot air balloon flights
  • go through the list of unmarried women I know to find a suitable step-mother for my children
  • ask for a refund on my allotment rental
  • print off all the messages I've received this week so one day, the girls know their mother was liked and loved and cared for
  • write letters for each of my children to open on important days: their wedding day, the day they graduate from university, the day their first child is born
  • tell everyone, even the people who will be embarrassed by it and the ones who may not love me, that I love them
  • knit next winter's woolly hats
  • record myself reading books so they don't forget the sound of my voice
  • figure out how to not cry whilst making a video message for the kids
  • choose the poems and songs
  • write a will
  • donate my hair to a wig charity
  • get the kitchen finished
  • organise, at last, the mess of important papers
  • compile one central list of addresses and phone numbers for friends and families
  • get this year's Christmas cards written and addressed
  • decide if I should include my name on them
  • have a party
  • get a really good family photo
  • teach my husband how to do French plaits and how to use the nit comb
  • teach my husband about sanitary towels, tampons and training bras
  • make more lists

finding out you have breast cancer

What?
No. It's just a little lump.
No...never had any problems with them before.
Um, I think it moves around when I press on it.
Yes. It's smooth.
Hmmm. Well, I wouldn't say it hurts. It's a tiny bit uncomfortable when I poke it.
Nope. Never been on the pill.
Never smoked.
Yep. Breastfed all four. Over a year each. The baby till she was two and a half.
Well, I think I'm fairly fit.
Healthy.
Haven't eaten red meat for 20 years.
We do eat organically, locally and seasonally as much as we can. We even started growing a lot of our own fruit and veg last year.
I'm pretty sure there's no family history. I haven't told my family yet. I didn't want to worry them needlessly.


What?
Cancer?
No.
No.
No.
Please.
No.