An Eeyore Day

Yesterday I had a bad day.  Well, maybe it was more like a bad half day….

Nothing dramatic happened to set it off…. I just woke up feeling particularly sorry for myself…

Looking in the mirror after my shower didn’t help: I was able to see the radiation effects even without the help of Spec savers! The reddened skin – I’ve been told it will continue to darken but eventually tone down – but which will always be darker, the texture always different and the boob always “more solid” than the left. The mid-line tattoo that looks more like a smudge than a large freckle due to the ink seeping into surrounding tissue. The scars: the left healing well but the right not so much…  the weight gain; the grey hair…  the arm exercises which are becoming increasingly more painful…. you know – one of those days where you just can’t seem to be grateful for all the things you KNOW you should be grateful for.

The rest of the morning didn’t get much better.  I arrived at the radiation bunker only to be told that the radiation-ray-gun machine wasn’t working – for the SECOND day in a row!

I felt particularly Eeyore like as I collected the letter for the Dent Doctor which would tell him my current radiation dose – well more accurately the dose I was on after my last treatment, two days ago! I mentally calculated that the additional 2 days would take me to almost another whole week of treatment 😦

I drove to the Cancer Centre, poured myself the traditional cup of hot chocolate (maybe another reason for the weight gain!) and sat down to wait.

Clearly I am not allowed to feel sorry for myself for very long. An elderly lady sitting in the chair next to me remarked on how much she admired the flower on my hat. I smiled politely and thanked her but as I wasn’t exactly in the mood for a chit chat, I went back to typing out a message on my phone (“…goodbye cruel world”…) 😉

However, her fierce need to share her story was always going to trump my desire to be left alone. She told me that she lives on the South Coast but that she was here supporting her daughter who had just been diagnosed with leukemia. Her eyes filled with tears as she kept on saying how she couldn’t believe this was happening to them, how she just knew something was wrong and how she rushed to PMB after hearing the diagnosis. How hard it was seeing someone she loved having to go through this and how helpless that made her feel…They would be traveling to Johannesburg this weekend to let her granddaughter know that her Mom was sick and how she worried how this news would be received as they were very close.

At the point where she was telling me that her daughter was single and how she was having to keep running her B &B business despite the fact that she was feeling so ill, Pete walked in. I was almost in tears with her – I really wasn’t expecting to see him there. Within a few minutes I notice Pete’s eyes looking distinctly wet especially after she told him that she could see he was a good man and wished her daughter had someone like him… (at that point I started to worry she was planning to knock me off!).

By the time I walked up the stairs to the Dent Doctor’s office clutching Pete’s hand rather tightly, my “I feel so sorry for myself” mood had totally dissolved in the light of that sad story and the reminder that I really DID need to be a little more grateful…..

It helped that the Dent Doc was happy with my progress. He was not worried about the reddened area under my arm or the fact that I had 2.5 boobs! He confirmed everything was looking good for this stage of treatment. We touched on some issues of life after radiation – (clearly I cannot just worry about one thing at a time) and he offered to send me some info to help me make some decisions.

It’s amazing how things start turning around when your attitude improves: I was called later in the afternoon to be told that the machine was up and running and could I pop by for my treatment – ummmm let me think about that..YES!  ANYTHING to minus another day!

9 more to go……

 

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“Our attitude towards others determines their attitude towards us”. Earl Nightingale

“The only person who can pull me down is myself, and I’m not going to let myself pull me down anymore.” C. JoyBell C.

 

“I’m sorry, but I don’t get it. If we’re supposed to ignore everything that’s wrong with our lives, then I can’t see how we’ll ever make things right.” A.S. King

 

“It’s about how you’re like a lighthouse, always searching far into the distance. But the thing you’re looking for is usually close to you and always has been. That’s why you have to look within yourself to find answers instead of searching beyond.” Susane Colasanti

 

“Seems like the light at the end of the tunnel may be you.” Steven Tyler

 

Half way with Arnold and Donald

So today marks my lucky 13th radiation treatment, and the fact that I’m officially just over the half way mark 🙂

I went to see Gillian yesterday just for a bit of a “tune up” session. She wasn’t able to work directly on the radiated area or touch the radiated skin, but it’s amazing all the tricks she has up her sleeve! She managed to loosen my tight armpit and tight pecs (believe me having rock hard boobs are not as fun as they sound!) by doing some weird stretching techniques around my shoulders and back! I left feeling like I always do, at least 5kgs of lymph lighter!!! The pool of fluid below my right boob and armpit is still there but a little less noticeable. I know in a day or two it will all do an Arnold and “be back” but for now I’m enjoying having only 2 boobs instead of 2 and a half!!!

The radiated area is now distinctly noticeable, the skin is rather pink and warm to the touch – just like having sunburn. Gillian noticed a tiny patch of red skin under the armpit which she said I must watch. The radiation therapist had a look this morning and said she wasn’t sure if it was a slight burn or an infected hair follicle. She mentioned that if it is an infection of some sort I may have to go onto an antibiotic. Radiated skin and a lack of lymph nodes do not make a good environment for healing ANY kind of infection So not quite sure what I would prefer – an innocuous sounding infected hair follicle requiring antibiotics or a radiation burn?!

I see the Dent Doctor on Wednesday so I will see what he says, but hopefully by then it would have done a Donald and “ducked”!!!

I have the weekend off and only 12 radiations to go!

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War Cries

I have a radiation mantra which I repeat over and over (to myself) daily while lying under the mercy of the radiation gun ray machine. A few words which keep me focused, a reminder on a loop of why I’m putting my body through this. It helps keep the anxiety at bay but mostly it just keeps my mind active and not fixated on my itchy nose, ear, cheek, chin, head, toe, spleen or any other conceivable body part….

It happens every time I am in my radiation-ready position: arms above my head, tattoos lined up, lazer lights on and just as the therapist has uttered the fateful words, “OK don’t move.”
And I mean EVERY TIME – without fail!!!

I now also have a radiation CD courtesy of Pete aptly named “Radiation Rock”! 🙂

So his morning as I drove to the bunker and started the usual search for parking, I had my music cranked up and I may or may not have been singing along with great gusto (and totally tunelessly)! But I found a fantastic parking spot! Coincidence??? I think not!

Every soldier needs a battle cry.
Anthems heralding their arrival on the battlefield.  How could a parking spot NOT open for me??? I confess,there may have been casualties – a startled car guard or two!

For me, songs are merely quotes set to music.

I love my CD of quotes, thanks Pete!

 

“Whoa, oh, oh, oh, oh, whoa, oh, oh, oh, I’m radioactive, radioactive”

Imagine Dragons (from Radioactive) 😉

 

“Everybody’s been there,
Everybody’s been stared down by the enemy
Fallen for the fear
And done some disappearing,
Bow down to the mighty
Don’t run, just stop holding your tongue

Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out, Honestly I wanna see you be brave”

Sara Bareilles (from Brave)***I LOVE LOVE this song

 

“Pretty, pretty please
Don’t you ever, ever feel
Like you’re less than
F***ing perfect
Pretty, pretty please
If you ever, ever feel
Like you’re nothing
You’re f**ing perfect to me”

Pink (from Perfect) ** the unedited version- the only version for singing loudly in a car but only when you are on your own!

 

“Now I’m floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me roar”

Katy Perry (from Roar) **I know you’re tapping your foot to this one!)

 

“Challenges do not define us
We are shaped by how we carry on
This is our opportunity
To decide the kind of women we want to become
And so, it is with great gratitude
And the strength of humility
We transform pain into victory
By digging our roots deep”

Jewel (from Flower) ***This is an amazing song – check it out

 

“I’ll hold my head high
I’ll never let this define
The light in my eyes
Love myself, give it hell
I’ll take on this world
Yes, I’ll stand and be strong
No I’ll never give up
I will conquer with love
And I’ll fight like a girl

Oh, with style and grace
Kick ass and take names”

Bomshel (from Fight Like A Girl) ***I love these words and a really catchy tune

 

“What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter
Doesn’t mean I’m over cause you’re gone”

Kelly Clarkson (from Stronger) ***Another song that needs to be sung VERY VERY loudly!

 

“Sometimes the system goes on the blink
And the whole thing it turns out wrong
You might not make it back and you know
That you could be well oh that strong
And I’m not wrong
Cause you had a bad day, you’re taking one down
You sing a sad song just to turn it around
You say you don’t know, you tell me don’t lie
You work on a smile and you go for a ride…”

Daniel Powter (from Bad Day) ***For the bad days….

 

“Better stand tall when they’re calling you out
Don’t bend, don’t break, baby, don’t back down

It’s my life
And it’s now or never
‘Cause I ain’t gonna live forever
I just want to live while I’m alive
(It’s my life)
My heart is like an open highway
Like Frankie said
I did it my way
I just want to live while I’m alive”

Bon Jovi (from It’s My Life) ***punching your fist in the air kind of song, gotta love Bon Jovi!

 

“But when the night is falling
You cannot find a friend, friend
You feel your tree is breaking
Just bend
You’ve got the music in you
Don’t let go
You’ve got the music in you
One dance left
This world is gonna pull through
Don’t give up
You’ve got a reason to live
Can’t forget
We only get what we give”

New Radicals (from You Get What You Give)*** I don’t know a more catchy tune – even if you don’t have a clue what the words are!

 

“But if you never try you’ll never know
Just what you’re worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I… “

ColdPlay (from Fix You) **** awwww

 

“Don’t say that later will be better
Now you’re stuck in a moment
And you can’t get out of it
And if the night runs over
And if the day won’t last
And if your way should falter
Along on this stony pass
It’s just a moment

This time will pass”

U2 (from Stuck In A Moment) ***I mean, it’s U2!!!

 

“Workin’ hard to get my fill
Everybody wants a thrill
Payin’ anything to roll the dice
Just one more time
Some will win
Some will lose
Some were born to sing the blues
Oh, the movie never ends
It goes on and on and on and on

Don’t stop believin’
Hold on to that feelin’
Streetlight people
Don’t stop believin’
Hold on
Streetlight people
Don’t stop believin’
Hold on to that feelin’
Streetlight people”

Glee Cast (From Don’t Stop Believing) ***Don’t pretend, I know you love this song!

 

“Do you ever feel like a plastic bag
Drifting through the wind, wanting to start again?
Do you ever feel, feel so paper thin
Like a house of cards, one blow from caving in?

Do you ever feel already buried deep six feet under?
Screams but no one seems to hear a thing
Do you know that there’s still a chance for you
‘Cause there’s a spark in you?

You just gotta ignite the light and let it shine”

Katy Perry (from Firework) ***Had to chuck another Katy Perry song in there cos I’m such a Pop Fan!

 

“Cause we are, we are shining stars
We are invincible, we are who we are
On our darkest days
When we’re miles away
Sun will come
We will find our way home

If you’re lost and alone
Or you’re sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on…”

FUN (from Carry On)  ***Cool CD huh?

Parking and Princesses…

So…5 days of radiation are done and dusted and I’m officially a ¼ way through!

I also have the first of my weekly visits with the Oncologist this morning….

What a week! After being told that I wouldn’t really feel any different or see any major changes in my body in the first 2 weeks or so…..typically or rather a-typically (of me) on the eve of DAY 1 I noticed that my radiated skin was already a bit red! By Day 3 and despite all my arm exercises, I could feel the tightening of the fascia in my armpit! I was also told I probably would start feeling rather tired half way through the treatment plan….*so sorry did you say something, I couldn’t hear you over my yawn!*

Eish!!!!

Being radiated lasts less than 10mins each weekday – I actually spend more time looking for parking!

The hospital and home of the local radiation-ray-gun-machine is undergoing an upgrade, so parking is a very rare commodity in both the allotted hospital parking lot and out in the street surrounding the hospital parking lot!

After being late for my second appointment due to the fact that I was driving like a harassed wild woman round and round and up and down the length, breadth and height of the entire parkade – desperately hunting for an open (and legal) parking spot. I eventually flew into the bunker red faced, red chested and completely mortified – I hate being late for appointments, especially when you have a specifically designated time slot….yes, I’m such a nerd 🙂

I vowed as soon as I got home I would place an “outraged” call to hospital management to complain about the lack of parking (and therefore the lack of compassion), for and on behalf of all the local radiation patients, especially considering it is the only machine in our area!

But as I was driving home rehearsing just the right wording for my protest (and mentally organising some civilized picketing for good measure) – I remembered someone telling me that when she was undergoing radiation 15 + years ago, her closest radiation-ray-gun machine was in Durban, a good 160km commute each day…. I then also recalled Gillian’s conversation with me a few weeks back, she mentioned that the “out-of-town radiatees” are housed in one of the city’s lodges where they reside from Monday to Friday while undergoing radiation – they go back to their respective homes on the weekends and then repeat the process each week for the duration of their treatment plan……

Imagine juggling work, children, pets and L I F E as a weekly boarder miles away from home?

So by the time I drove into my driveway, I felt less indignant and a little more grateful – walking the 500 or so meters to and from my car every day didn’t seem like such a huge ask…..and in the words of one very wise person…….” Suck it up Princess”……………19 to go!

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“The way humans hunt for parking and the way animals hunt for food are not as different as you might think.” Tom Vanderbilt

 

“The world is not a wish-granting factory, gotta learn to suck it up.” Unknown

 

“When Solomon said there was a time and a place for everything he had not encountered the problem of parking his automobile”. Bob Edwards

 

“Suck it up! A foolish grumble of advice. Why would I want to suck it up? Why draw it in to let it fester and rot internally until it cankers my insides?

I dare offer wiser words―spit it out! Weep, wail, and raise your voice to the heavens as fresh wounds bleed dry! And then cast it all to the wasteland of dead concerns to be consumed by vultures and maggots.” Richelle E. Goodrich

Beam Me Up Scotty!

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So today after another false start yesterday, I began radiation treatment…….

After all the delays I had pretty much taken things in my stride – even yesterday after receiving the phone call to cancel my appointment due to the machine still having some issues – just as I was heading out the door car keys in hand.

However this morning, despite all the positive self talk and the distractions of some shopping, I arrived at the radiation bunker feeling rather sick.

Some paperwork was given to me to complete and I even had my photo taken (apparently this is for the machine’s computer programme – a way of matching the right plan with the right person, just in case they have a patient with the same name – eish good to know!). Boy, if I had been given some warning I would have made more of an effort…. I am quite sure THAT photo was circulated around the office for some Tuesday comic relief!

I barely had a chance to settle down with a magazine before my name was called and I was sheparded into a rather cavernous room to meet the radiation-ray-gun machine….. (I come in peace)…….and to be given some further instructions and advice on post radiation care:

NO RUBBING of the radiated area
NO taking large amounts of Vitamin C or Anti oxidant supplements (adding these naturally in my diet is ok);
NO TIGHT CLOTHING (Darn, there goes my weekend plans);
I MUST keep up all my arm exercises to keep fibrosis issues in check, especially in my right armpit;
Only dribble water over the radiated area (apparently that meant in the shower and not from my mouth:) );
I CAN wear deodorant but nothing with metals (Pete and many, many people will be happy to hear that!)

I was instructed to remove my shirt and lie down on the moulded plastic bed with my arms resting in the holders above my head while two attendants lined things up and moved things around. The lights went off and the room was transformed into something resembling a sci-fi stage: Green laser beams on the ceiling and on my chest.

I had been told the first treatment would be a little longer than the norm as some x-rays would be taken, but that I was not to move a muscle.

The therapists left the room and there we were – just ‘lil old me and the scary radiation-gun-ray machine.

It started coming to life making some odd humming noises as the “arm” started to move. At that point I would really like to say I lay there watching everything with a calm, detached and curious demeanor but honestly I can’t really tell what happened as I closed my eyes tightly, found my safe place and started repeating my radiation mantra over and over again…

It was quick…. I mean really remarkably quick….

The therapist came back in the room, the lights went on and I was given the green light (no pun intended) to lower my arms and to get up and dressed. I then followed her into the office and was officially given my time slots for the remainder of the treatment plan.

I was sent off with a smile and a “see it wasn’t that bad, see you tomorrow” – clearly I had my “deer in the headlights” look when I arrived!

The best part..…validated parking AND only 24 treatments to go!

 

“Laugh, even when you feel too sick or too worn out or tired.
Smile, even when you’re trying not to cry and the tears are blurring your vision.
Sing, even when people stare at you and tell you your voice is crappy.
Trust, even when your heart begs you not to.
Twirl, even when your mind makes no sense of what you see.
Frolick, even when you are made fun of. Kiss, even when others are watching. Sleep, even when you’re afraid of what the dreams might bring.
Run, even when it feels like you can’t run any more.
And, always, remember, even when the memories pinch your heart. Because the pain of all your experience is what makes you the person you are now. And without your experience—you are an empty page, a blank notebook, a missing lyric. What makes you brave is your willingness to live through your terrible life and hold your head up high the next day. So don’t live life in fear. Because you are stronger now, after all the crap has happened, than you ever were back before it started.”  Alysha Speer

 

“When I was 41, I found a lump the size of a grape in my right breast. I ended up bald, sick and exhausted from surgeries, chemo and radiation treatments. Ah, but I got to live” Regina Brett

 

“Make the best use of what is in your power and take the rest as it happens.” -Epictetus