Hot like radiation

1 Oct

I’ve got the song with the chorus line ‘hot like radiation’ by Gavin DeGraw on the iPod.  It’s not quite the same:-)

Submitting to this treatment everyday has challenged me (and those around me) in more ways than I can find the words to describe.

Dragging myself to the ‘radiation bunker/chamber’ every day is taking its toll.  I’ve managed to make myself physically ill every single day – despite counting down each day as a step closer to finishing this.

I’m so very tired.

I’ll spare you the detail of every day.  But here is the ‘mark up’ – tumour site, mid-line, ‘field’, the sexy gown I wear every day, some of the impact……

Psychologically – in some ways this is far more difficult than chemo.  There’s an algorithm to that.  This – ????

My mind is struggling.  My body is beyond exhaustion, my skin – so fragile – it’s burnt, blistering, itchy, hot, tender….red raw…..

The side effects?  Well, the main ones – the burn and fatigue has increased.

Fingers crossed things will settle soon…….

Farewell Bunker (thanks for the inappropriate tan!)

15 Sep
I am not going to miss heading to the radiation bunker everyday.
25 treatments with weekends off (& the odd long weekend when the engineers re-calibrate the machine) has been taxing.
The soundtrack to accompany my ‘alone time’ in the ‘Mediterranean Sea’ has included everything from Michael Buble, to Powderfinger, Etta James, Ella Fitzgerald and Kylie.
I’ve been a difficult patient.
My Radiation Therapists – amazing (Julie above & Bec below – Matt, Luke & others not there on the day I took the camera).
They’ve dealt with vomit, tears, burnt skin and moods – which at times have been not overly friendly.  We developed an understanding that, on those days where I couldn’t even bring myself to make small talk, we’d just say I ‘wasn’t feeling very sociable’.

Mediterranean Sea…

8 Aug
I’m off to the Mediterranean Sea, but there’s not a greek salad or limoncello in sight (worse luck!)
Instead, a radiation therapist presents me with a hospital gown and ushers me into a change cubicle.
This is really not the kind of sign I need right now.  I know they have to ask, but SERIOUSLY…..

From there, I enter a huge, cold room with a multi-million dollar linear accelerator sitting proudly in the centre.  I have to hop onto a narrow bed with head and leg supports, pull the gown down to my waist and let the therapists line me up.

My arms are back over my head like doing a backstroke kick drill in the pool, but instead of a board, I’m holding onto metal bars with protective plastic covers to keep things sterile.

 

As Matt and Bec work feverishly, measuring with pinpoint accuracy from the table to my new tatoos etc. – I’m silent.  In spite of much effort to stop tears, they flow freely from my eyes.  Their warmth sliding down my face and onto the hard surface surrounding my head.  As big, heaving breaths develop, I try desperately to suppress the fact I’m about to howl like a baby.  How I wished this was ending not beginning.  I have no idea how to get through this daily occurrence which will last the next five-to-six weeks.

Breathe deeply and take stock.
I’m still here.
This is helping to FIX ME.
It is quick and painless.
It’ll be over soon.
Tomorrow’s another day.  How lucky I am to have that:)

Get me out of here!!!!

‘Friendship’

19 Jul
It can take on so many different forms, huh?
I’ve written before that cancer brings out the best and worst in people.
The last six months, and in particular the last month or so has taught me a LOT about human nature.
So heart-warming it is to have some wonderful, life-long, true friends.  Being able to rely on these bonds is a lovely support.  Connecting with these people in times when I really could do with a friend, is like snuggling into a warm, comfy bed during a violent electrical storm.
I’ve also made some new friends since my first diagnosis – who I know will also be around for years to come.
The Big C, it’s obvious, is too much for others to deal with/cope with/handle etc.  Not personally – it’s me that has it, yet they can’t seem to find a way to maintain a relationship I perhaps ridiculously thought was rather important.
I’m unbelievably sad to be in this situation, with more than one person.
Devastated is not too strong a word.
I can’t make anyone care about me more than they actually do and just don’t have the energy to fight this front – I’m busy fighting cancer.

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!!’

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