Archive | May, 2012

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..