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It’s all in the numbers…

13 Jul
Blood tests have become a very regular part of my monitoring/treatment regime.  The day before chemo every three weeks, they run a full blood count to look at my haemoglobin levels, platelets etc. to ensure they’re at safe enough levels to go ahead with treatment.
Whist my levels have been markedly lower than in a healthy person, I’ve been lucky enough not to have a single treatment postponed.
At Round 6, my haemoglobin levels had dropped to 99 g/L, and my Medical Oncologist said casually “although you’re feeling pretty horrible, I wouldn’t transfuse you at this point.'”  Whoa!  Lucky I’d known a bit about this potential situation not to be completely freaked out.  Still, not a nice prospect.
Sure enough, I’ve come through the last hit, but don’t feel well at all.
For a few days I questioned whether I was just sleeping on the portacath a little funny, or doing a bit too much.  But even the most simple of tasks like showering, are wiping me out.
The lowdown…
FEC!
Vitals…
How I’m doing…
Bloods
I feel a debilitating heaviness in my chest, am short of breath, dizzy when I stand up too quickly etc.  I’ve also had a temperature edging very close to 38 degrees every day since my last treatment, which in itself, is exhausting.
When I rang the hospital, Elke was very quick to organise another round of bloods.  Marked ‘URGENT’ I waited for the result, for the first time really considering I might have to rely on donated blood to keep well.  Ohh this little body has been through the wringer!
The result was that, yes – my levels had dropped since the last hit.  Haemoglobin to 92 and platelets to 45.
Elke said while my Medical Oncologist – who is away, might have said ‘have a couple of bags’, the specialist covering him was reluctant.  He said I’m “too young to go introducing blood products if we don’t absolutely have to, so try to handle things at home and hope I pick up in the next week or so.”
The orders are to lay low, avoid potential infection etc. not do anything strenuous, don’t get any cuts/wounds, keep an eye on bruises/blood noses etc.
Any dramas – straight to Accident and Emergency.

Slight delay, made my day!

10 Jul
I’m not one to procrastinate, I like to get things done – but here is one break I feel I really need.
After much consideration and consulting the main players in my care team – I’ve just asked for a fortnight delay to the start of my radiotherapy, to be met with a ‘yes’!!I know, I know – all the Doctors are saying it’d be best to ‘just keep going’ now I’m on the roller coaster…….
There are so many people involved, but to put it bluntly – I’m just another patient to slot into busy schedules.  It’s my body that has to back-up and do this and I’m just not ready.There’s no concrete reason to rush this (obviously if there was a strong argument I’d listen and consider), two weeks won’t make a huge difference in the grand scheme of things – but to me, right now?!Ultimately – it’s my call and I’ve made it.  A little win and I feel like I have regained a tiny bit of control.  Just making the decision, which I believe is in my best interests – has been remarkably empowering.

My body needs a rest and I need to catch my breath.I’m so relieved.
(Yep, my face – including lips and eyes are swollen and sore..mouth is full of ulcers which makes it painful to smile.  Still – I’m happy enough to give a thumbs up!!!)

REALLY – you want me to go there?

8 Jul
Okay – here they are, warts and all.
People keep asking what is the worst side effect?
Seriously – it depends on what time of day it is, what emotional state I’m in, whether I’m really hungry, cold, tired etc.
Here are some;
WEAKNESS
TEMPERATURES
HOT FLUSHES
CHILLS
MEDICAL MENOPAUSE
EMOTIONAL
MOOD SWINGS
EVERYTHING HURTS – BONES (so hard to describe an intense almost bone-crushing pain), MUSCLES, EYES, THROAT, BACK OF NECK
ULCERATED MOUTH, LIPS, NOSE – sometimes eyes…
WEIGHT OF MY CHEST WHEN I LIE DOWN
HEART RACING
SHORTNESS OF BREATH
BEING WIRED FROM STEROIDS & UNABLE TO SLEEP DESPITE EXTREME FATIGUE
NERVOUS TO SHOWER WITHOUT SOMEONE HERE TO PICK ME UP
METAL MOUTH
VOMITING
NAUSEA
CAN’T KEEP ANYTHING DOWN
SMELL OF FOOD MAKES ME WANT TO PUKE
CONSTIPATION (not like just being ‘clogged’ – not one bit of your digestive system wants to co-operate)
GREY SKIN
SUNKEN, BLACK EYES
BLOOD NOSE
TENDER SCALP
BALDNESS (+ other hair loss)
PAINFUL FINGERTIPS and TOES
FRUSTRATION
EXHAUSTION
LOOKING LIKE A GHOST
SICK OF LYING AROUND
SICK OF FEELING SICK
SICK OF DAYS PASSING
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No news is good news (unless you’re a journo!)

5 Jul
I kid you not – my lovely Medical Oncologist said to me today ‘I guess Kate, it’s a case of no news is good news’.
In a flash, I was reminded of how different my circumstances are right now, compared to just a few short years ago in the News Room.
(Not exactly ‘newsworthy’ – but a fun little yarn & photo opp. anyway!)
His comment came in a discussion about how I explain to others, my cancer status from here.
Basically;
  • The tumour is gone (thanks to Dr D’s surgeries),
  • My system’s been hammered to get rid of any other cancer cells (thanks to chemotherapy – fried from the inside, out),
  • And the area local to the tumour – which equates to about half my chest/torso, is about to be targeted with super-strong x-rays to zap any cancer cells which may like to spring up in the problem zone (Radiotherapy – fried from the outside, in!)
Years ago – the ‘C’ word used to mean cancer and many were scared to use it.  We often forget the other ‘C’ word which is used very carefully in any medical consultation.  Bless Dr D for his efforts to cure me this time and first time around.  I understand, as he said ‘shitty things happen to nice people’.  I’m not going to ask for any declarations of cure from anyone.  That is grossly unfair.
I hope you all understand too.

Independence Day…

4 Jul

It’s Independence Day – not just for the Americans.  Today – 04/07/2012 is #6 of 6 in my chemotherapy regime.

I should be excited – but I’m sick.

The last chemotherapy session should be cause for celebration, but I’m yet to ride out the effects of the last treatment as I brace for this final hit.  Still, I manage to smile (not quite as broadly as Paul though!)

KC & Paul

As thankful as I am to the wonderful team of nurses who’ve looked after me in that unit, I can’t seem to find the energy to say “YAY – it’s time to get out of here”.  You see, I’ve got some idea of what the next few weeks are going to be like.  The celebrations will come after I’m over the worst.

Before I could do a runner, I had a bit of a reaction again.  So scary.

Thankfully Elke and the team were onto it quickly and the oxygen helped me chill a bit (rude interruption while I was trying to fill out the patient satisfaction survey!).

A brilliant reflection…

2 Jul
How well this man has articulated some of what I (and I’m sure many other cancer patients) feel.
Seriously worth taking the time to read.

Urghh!

29 May
Anyone who knows me – knows I LOVE my food.
Good, fresh, healthy, hearty, wholesome, nutritious, nourishing etc.
Frequently during these past few months of chemotherapy – food has actually really upset me.
Whether it’s that I haven’t been able to tolerate it, I miss some of my favourites, prepare a dish only to feel violently ill at the smell of something delicious…..  It’s frustrating!
I got terribly excited a couple of days ago, when reading that some of my favourite things would combine later this year.  I let the thoughts of visiting Gwinganna and indulging in cooking classes with the wonderful Maggie Beer be entertained, for just a while.
Today – I looked at the dates.  I even went so far as to mark them in my calendar as a bit of a goal!  I let myself imagine – how fantastic it would be if, in just a few months time, I could enjoy such a treat.
Then I counted the weeks left of chemo, the radiotherapy treatments to come and realised it’s going to be a bit beyond my reach.
Major disappointment.  Tears even.  Over food, a beautiful location and a once in a lifetime experience.
I want to say ‘next time’, before giving myself a not-so-subtle reminder – this ultimately, is about being able to revel in such simple delights.

Sick, not dead.

8 May
Sorry to be so blunt – but it’s a fact.
I’m SICK, not DEAD!
Some people I thought were a big part of my life can’t seem to cope with my illness.
I apologise.
I also know everyone deals with things differently.
The harsh reality is I can not close my eyes and pretend this is not happening.
Others conveniently ignoring this, choosing not to say anything (because they ‘don’t know what to say’) etc. etc. is not good enough.  Frankly, I deserve more and they need to man-up and face the situation.
I’ve resorted to laying my cards on the table and giving people the choice to ‘opt in, or opt out’.  You see, I don’t have the energy to chase after people who will take the sympathy for my illness and tell all and sundry what a special friend I am and how sad the situation is…..blah, blah!
You can choose who is in your life – and to what degree.
So – it’s all in, or not.
Friendships are fractured or strengthened by something such as cancer.
So – again, I’m sick – not dead.
When I am dead, it’ll be too bloody late.

Things that make me feel good…

5 May
Dry body brushing.  It requires more energy than I have most days, but does actually give my sore body a feeling of being alive.  Perhaps it’s that it stimulates the lymphatic system just under the surface of my skin.
Music.  I’m drawn to a vast array of styles, but lately am listening to some pretty intense lyrics in work by David Gray and Missy Higgins, the unmistakable tone of Seal and Norah Jones and can escape completely in the sounds of Harii Bandhu.
The gentle warmth of the sun (although I’m very careful not to be in direct sunlight as it can damage my skin…)
Ginger ale, ginger tablets, ginger anything!! It goes some way towards easing the seemingly endless nausea.
Rinsing my ulcerated mouth with an appropriate mouthwash.  It tastes awful, but brings relief.
Not smelling food as it’s being cooked.  At least I’m not over the aroma by the time I dish up.  Good thing I’m a lover of raw food!
Old photos.  They just do (make me feel good).  Vivid reminders of when life was so much simpler.
Someone smiling when you make eye contact.  So nice to see a genuine smile, rather than be greeted with the stress and worry of that person’s challenges in life.
A bath.  The water manages to bring an instant calm.
Breath.  Long, slow, controlled, deliberate, nourishing, fulfilling, life sustaining.

Well put by John Mayer…

3 May
His song ‘War of my life’ accurately describes how I feel…..
Today has been, without exception, the scariest day of my 34 years.  My experience in the Oncology Unit, is the first time in my life, I’ve been scared for my life.
The third round of chemotherapy started as the previous two have.  Then the ‘cyclo’ (Cyclophosphamide) started feeding through the catheter in my chest.
One minute I was casually chatting to Paul….(maybe about the impressive view from where I lay…)
The next, I felt violently ill.
After lurching forward and spluttering that I needed a sick bag NOW, I watched Paul walk to the nurses station.  As he did, my vision became blurred and I could only make out his shape.  My heart was racing (courtesy of the cocktail of drugs – including steroids), I was burning up and breathing became difficult.I could hear footsteps, but not see anyone, as I tried to keep calm and control my breathing.  My breathing was shallow and painful, I was using every bit of strength I had to try and get some air in.
At that moment, I realised if I couldn’t take in some big breaths – that might be it.  In spite of my efforts – the drugs were in control.  A frightening realisation.

I closed my eyes tightly, willed my lungs to accept the air I needed and felt Elke’s hand gently push on my forehead forcing me to lie back on the pillow.  With the help of another nurse, she quickly and expertly got the oxygen mask on and as the situation settled, reassured us that I’d be okay.

And, when I snapped out of it – the look on Paul’s face expressed but a hint of the trauma we’d both experienced..
Elke explained I’d had a reaction to the combination of drugs.
Next time around, they’d slow that third one right down (so it dripped in), to avoid a repeat of this episode.
Although I asked questions, tried to understand what on earth had happened, all I really wanted was to get the hell out of there and deal with the next time, next time.

Three different days….

1 May
It’s the day before my third round of chemo.
An early start, for an early blood test to determine whether my blood count is safe enough to have treatment tomorrow.
I drove myself to the appointment – a big step.  I’ve only driven a couple of times since my surgery for endometriosis in mid-December and I certainly haven’t driven myself to any appointments.
It’s rather chilly in the mornings now – but I felt really alive!  Window down to take in the fresh, crisp air, and in I felt in control (ohh – and I was wearing a bold kaftan I’d made, some new knee length boots and a pretty cool black lace & velvet fedora!!)  So, I felt good.
Five of the six chemo nurses complimented me on how well I looked, that’s gotta make you feel good too (One exclaimed ‘you look SMASHING!’  Feel good factor – 10+!)  Despite how awful I feel for the first seven-ten days each cycle, I’m managing to pick up with some good food and as much activity as I can manage for the rest of the time in between treatments.
I know tomorrow will be entirely different as the drugs pump into my chest and through my veins.
Then they’ll take hold and it’s a very different ball game.  It’s all about not vomiting and just managing the essentials like eating, drinking, bathing…..
24 hours after chemo, I have the neulasta injection.
I commented to Paul over lunch today that these three days are so different and extreme.
Day before chemo – bloods and cramming in as much as we can!
Day of chemo – roller coaster ride of drugs taking control of body.
Day after chemo – loss of control continues but add in dread of neulasta injection.
Ohh – around 12 hours after that injection that feels like thick, wet, cement going in – the bone pain starts.
No wonder Paul doesn’t know what to expect!  I don’t either – although the drugs are the same, each hit on my body is different..

Chemo 2 (11/4/12)

11 Apr

Round Two.  I’m scoffing chocolate like everyone else.  It’s Easter!  Thanks Mel and Ryan for loading me up.

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I’ve lost a bit of weight these past three weeks and my hair has pretty much fallen out.  It’s like some old bugger’s had a shave and left his stubble in the basin.  I can’t imagine how hard it would be having long hair and it falling out as you brush it.  I think it’s easier this way.  I’m not really fazed.

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I make an effort to ‘put a face on’ and wear something nice (including heels).  I figure if you can try to look your best (at least on the way in), then you’ll hopefully feel your best.  It also makes the nursing staff and other patients smile.
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One thing that made me smile (actually no – I laughed out loud), was when I went to the bathroom during treatment. The nurse looking after me warned that the Epirubicin (or RED DEVIL as it’s known by most of the patients), comes out the same way it goes in.  Paul didn’t believe me, so yes, it’s gross, but I took a photo of what I’d left in the toilet bowl!IMG_0394
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Whilst my food intake is pretty low and the flavours bland (such as bread and baked beans) I did manage a meal out with good friends Tania and Clayton.  And on another outing, Mum captured little Harrison with more hair than me:-)

Loooong nights…

4 Apr
Not getting enough sleep is exhausting.
Body hurts, brain’s busy and the many usually sleep-inducing tricks I try,  just don’t seem to be working.
I’m getting cranky that it makes me so tired the following day, when I could be out enjoying myself.

A hell of a run….

28 Mar
This time a week ago I was lying there letting the first round of chemotherapy course through my veins..
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Just a week before that, I was in theatre having my ovaries removed and portacath inserted.
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To say my body is ‘feeling it’ is quite the understatement.
Seeing Dr Horwood today he commented that I’ve been on a “hell of a run”, but we “had to pull the trigger on chemo and get it started.”  Started – it has, feel it – I am, all in order to get rid of this horrid disease.

How much do Oncologists care?

27 Mar

An interesting little read…

http://blogs.webmd.com/cancer/2012/02/how-much-do-oncologists-care.html

Chemo 1 (21/3/12)

21 Mar

I truly do feel as though this disease is not about me.  Sure it’s happening to my body, but I imagine I’m sitting atop a mountain and just observing how it is affecting everyone around me.  Those close to me, those not.  Just seeing how people act and react is quite astounding.  There are many life lessons to be learned from these experiences.

Below are a few shots of my new Port-a-cath, through which the chemotherapy and other drugs will be administered (It’s still brand spanking new, so a bit sore.  My other surgical wounds are still taped).  I cover the Port with an anaesthetic patch about an hour before my treatment is due to start, so the ‘puncture’ of the special needle doesn’t hurt as much.

I have a special card for my wallet, so if there’s an emergency the appropriate action can be taken by those around me.

The nurses try to make you eat during treatment (’cause you’re apparently not so keen once the nausea kicks in).

My chemotherapy regime is FEC – detailed in my Medical Oncologists notes below.  He also lists potential short term and long term side-effects.  It’s an unusual predicament to be in you know, talking about some of the Pros and Cons.  Reality is, this treatment is designed to get rid of the Breast Cancer once and for all.  Here goes!

Two friends did amazing things for me today.  Robyn, who has also had hear own battles with Breast Cancer dropped off a bag full of potato chips and chocolate – as that’s all she could eat during her chemotherapy.  And Catherine, who had an acute Leukaemia, called before I began my first round.  She told me no words can quite explain the feeling of the drugs going through – but you just have to ‘suck it up sista!!’

Chemotherapy #1

21 Mar

I know everything’s about to change.  I’ve agreed to this treatment regime that is designed to ‘mop up’ any cancer cells.  The sense of dread I feel is so extreme.

Dr Horwood is gentle, but definite in his approach.  It’s time.  
We’ve been over and over my history and the prospects for my future….He, Dr de Viana and I.  This is not a demand or expectation of any one person, a decision made in consultation and agreement following careful consideration of pathology, expert opinion and my wishes.  Ultimately, it’s me that has to do this.  I do so with strong conviction.  I do not ever wan’t to end up in the same situation again.
Paul looks like a deer in the headlights.  Can’t look……
We walk across to the Oncology Unit.  I don’t introduce myself, but feel completely blank as I’m ushered into a room.  I’m absently, vacantly doing as I’m told.  I can’t even look at Paul.
All of a sudden, I start heaving and feel on the verge of breaking down.  Deni, the nurse, has seen this too many times before.  She shuts the door and leaves me to compose myself.  I actually CAN NOT BELIEVE I’M HERE.  After everything that’s already been done.
Five surgeries, destroying – then rebuilding my body to get rid of the cancer……  It’s come back, go another three times Dr D and now look where I am…..?!
I have an incredibly intense need to RUN as fast as I can as far as I can.  I can see the doors to the lift…………
Howling stifled, I just kick my shoes off, lay down and let the nurse get on with what she needs to.
I’ve had the anaesthetic patch on my chest/portacath for an hour.  I take a deep breath on command. The needle and pressure still hurts.  It punctures my tender skin still healing from surgery.  It STINKS – literally!!!  The smell is vomit-inducing.  Then the cold rush reminds me I’m alive.  I’m trying, but can’t begin to explain the feeling of………invasion.  I have no control here.  I am at the mercy of these drugs.  Good thing I have confidence and trust in my doctors.

Bald & Bubbly

3 Mar
Yep – the hair’s coming off….
This is what I looked like 8 years ago when I did the ‘Shave for a Cure’ for my friend Catherine, who was battling Acute Myeloid Leukemia…
Happy to report Catherine’s now going great guns!!!
Here’s what happened this afternoon….
My friend Di (former colleague at Cancer Council Queensland and P/T hairdresser), came to visit – with clippers in hand…
Some people have questioned the ‘need’ to do this now, as in before the hair loss effects of chemotherapy kick in.  Yes – there’s a need!
As you know – I’ve tried to be as prepared as possible for everything this disease throws at me.  Choosing to have my head shaved is part of that preparation.  It’s a mental preparation.  I can’t control that every other bit of hair on my body will disappear (including my eyelashes – with I’m kinda fond of….), but this I can take the upper hand on.
Also – many who’ve had chemo tell me that the hair follicles become very sensitive as the hair starts to fall out in clumps.  I’ll be buggered if I’m going to wait for that, then let someone run vibrating clippers over my sore head.  No thanks!
I understand for many women in particular, this is a seriously confronting time.  A nurse suggested to me that I was brave and that appearance, hair loss & body image with cancer are such difficult things to negotiate…I agree.  But – body image to me is not about my hair. It just isn’t.  I wake up in this cancer-affected body every day.

FEC’n hell…..

29 Feb
Swearing alright..
Googling ‘FEC’ doesn’t return any ‘light reading’.
Here’s the best way to explain the chemotherapy regimen I’ll be on. A simple hand-written piece, provided by my Medical Oncologist.Thank you Doctor.
FEC'n hell…..

+ another 3 = 8

29 Feb
No, I never thought I’d be writing about the 6th, 7th and 8th operation on my ‘breasts’ (& ovaries…).  Here I am.
Thankfully – it’s all happening very quickly this time around.
As I get ready to start six rounds of FEC chemotherapy and then six weeks of radiotherapy, here’s a re-cap of some of what’s happened since I saw Dr D, January 17th (just six weeks ago.)

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