Blog # 6 of Hard to Swallow.
Title: Characters you meet and the music that they bring, sitting in a chemo chair.

Temperatures were rising quickly when I arrived at the Frankston Intergrated Care Centre to have my 3rd Infusion of chemo. I walked across the pathway's to the Centre with an umbrella up looking very important to protect me from the sun plus my 50+ sunscreen spread everywhere else that may be exposed. People might think whose is this bloke with his mate/assistant carrying a bag of books, earphones and stuff.

So yeah, the usual anxieties heightened but its the thread of life and I'm ready to go and in good shape, so you deal with it.

Weight down a bit at 75.9kg from 83kg over 5 weeks, however no sugar, no pizzas, no more the 'occasional' potato cakes, fried dim sims, chicken strips, donuts, sweet biscuits, ice creams (long for a choc top) no dairy (really like soya milk now) and small big 'm's all shelved.That's all due to swallowing difficulties with the cancer plus recommended delete's from the researched side effects of the chemo, it works, but hey I'm in good shape and still have much energy with yoga, walking, bike riding and garden time.

Into chair #4 this time with a different array of chemo recipients before me in chairs 1, 2 and 3 and what characters they were. 

First off was a gentleman named Laudio late 60's maybe, he left no doubt he was an experienced recipient, bringing his own esky with cereal and soya milk, home made muffins, nuts and fruit and of course a flask of expresso coffee. I was intrigued, curious and it was a 'lay down misere' I was going to speak to him, his cheeky smile was so welcoming.

But he was first, my hands were tapping on my book as I was listening with my blue tooth earphones to the brilliant drumming in the song 'Push' by the Cure, so Laudio sings out 'what you listening to young or younger than me old boy'. I said The Cure, 'good choice' he said 'I listening to Pavrotti, ah you are the only flower of my life' and is wife walked in, a moment to savour, reflect and understand the important things in life, your loved ones above all.

To my right a woman, in for the first time with her portal swinging into action with the chemo drip streaming along. She pulled her earphones off and asked what music we were talking about. Her name was Angie, early forties, this mongrel disease has no discretion.

She said the Stones but not Angie she thinks that song is to sad, so she said she was stuck for a song or saying about her. I said to her 'whats your favourite part of the day' she said 'the morning' I suggested you could consider 'Just call me ANGIE of the moning' we had a laugh and earrphones went back on. She left earlier than I and said I'm going to down load that song, smiled and left.

The last couple before me were Billy and Tilly, his first time in his early 70's his earphones carried the Doobie Bros, again this miserable low life disease catches the coolest people.Tilly had been listening to the converations on music and gigs she nudged a rather nervous Billy to respond with all the music he loved, we nodded approval to Jackson Brown, Peter Frampton and Eric Clapton so he happliy returned his earphones to his head. 

This trio of chairs with music heroes before me may never happen again, but be rest assured if one or more of them are in the same room as each other or I, we'll have no trouble mixing music yarns and gigs and merrily passing  the time as our life's threads decide our future.

Me, I'm ok the aftermath is the hardest in the first days post infusion, but I'm strong, positive in mind and body so once side effects come I'm a little better to deal with them.

Next infusion and the 4th is in 2020, January 8 once done we head to the scans as the first marker of progress, a fairly important juncture I suspect, but what will be is, I can't change that, power of positive thinking in play helps. Outcomes by January 15, then 4 more infusions to go, regardless..

Pies still lead Carlton by 15 points heading to half time(for you Wayne).

To you, thank you for your kind thoughts, they mean much to me and help drive me to my goal of remission. All the crap, exhausting as it may be (great choice of words by Dawn) that I go through is going to save my life...

Believe and Rise...

Have a great Christmas with family and friends and cracking start to the New Decade, does 2000 seem that long ago..?

See you in my chat room with the 7th Blog in 2020, be well and content, remember the morning is your friend embrace it, keep your neighbour in sights they might need You.

Boxing Day Cricket to come.
Stella short film festival
Trips to the country...

Dont stop planning things.

Oh and Daniel the The Go-Betweens Anthology Volume 2 is an outstanding masterpiece. The Rarities in particular. Thank you for organising this to be sent to me.

Love from me
Charles 2019 into 2020.. 
   

Hard to Swallow
Blog #5

Title: Endure, Rebound & Recover

Endure

Well I've just finished the second bout of chemotherapy, not sure about the therapy bit, certainly alert to the chemo part of the word.

Currently featuring a 'chemo' glow on my face, just like a cherub, just in time for Christmas, well at least I can run my fingers over my face and warm them and shake off some of the neurotherapy that's attacking me. 

So what has been happening since we last sat together. On 4 December I met my 9am appointment at the Intergrated Care Centre at Frankston Hospital for the infusion of two of the three drugs being pumped into me. The third drug is connected to my chest portal and drips into me through a bottle swung around my neck for the next 2 days. I go home. A little inconvenient you might say but hey it works. 

Friday just gone I returned to the hospital for the disconnect and flush and so the three day vigil has finished.

I must say the nurses that attend me are the most caring, attentive,informed and dedicated people I've ever met. Well I guess I feel this way with what is encompassing me just now. They put up with me playing my music through my bluetooth earphones throwing my arms around and sometimes bellowing out some words to the songs that embrace me. They smile and get me chicken soup and crackers with vegemite and peanut butter.

Now this being my second 'blast' I was waiting for the side effects to kick in that were experienced before and any others that may appear. Being aware is half the battle to overcome them however the impact can be unexpectedly greater as was the neuropathy this time. So to the oncologist this week to tweak the dose to try to calm the problem for the next infusion due 18 December.

The usual tiredness and fatigue kicks in, however I've learnt to deal with this better. When fatigued rest, short nap and slump the body onto a bed or a yoga mat, both just as soothing. Now the tiredness that's when you get up and go for a walk, near me, well 4 minutes away is the Seaford Tea Tree walk along the beach that lift's my spirits and my feet.

Then home to do some stretches and poses I can recall from Monica's morning yoga sessions with me.

Enduring is made easier with the support I have, it's humbling, friends and neighbours come to me with thoughts and deeds that lift spirits and add to my growing positive feelings with the chemo. To that end I received a message from a dear friend whom is dealing with the aftermath of an attack of this evil beast with the wise words that resonate with me, in particular as learning to endure the process I quote:

"Be strong, I did positive affirmations thinking of the chemo as a golden thread that was strengthening me - even when it exhausted me"

The swallowing has been a key concern which has limited my diet, though Monica and I have come up with some amazing dishes, however at times the soups, well there is only so many recipes you can attempt.

Our neighbours Jenny and Stefan have brought over Beef Broth and Fish Broth that have been added to a variety of dishes (eg Laksas, Rissotto's and the like) so ever grateful for their love and care.

My friend, Tom Tomac has created a journal on an excell spread sheet that I add to every day that highlights my physiological symptoms, food diary, psychological symptoms, activity and exercise. Tom is brilliant in the medical field, google him it will tell you a 'little' more about him.

You never know it might become a table book for those suffering from esophageal cancer as a primary.

So we are able to monitor any changes in my mind and body and identify with what places my moods and chemo side effects take me and how best to deal with them and what keeps me in good shape for the next bout. 

Of course I've wonderful support from my Rotary Club (The Rotary Club of Frankston), never taken for granted but always there. I'll be back. 

Rebound

Some news of improvement, I'll go easy on this cause I don't want to jinx it, with 2 chemo bouts done my swallowing has eased at an alarmingly amazing rate. So the diet can vary further and I can indulge in foods I really love as well as sticking to what is working for me.

Just had some toast and vegemite, the toast was fantastic and been sorely missed, had it with scrambled eggs (and bacon, woohoo) for breakfast yesterday I can't explain how good that was.

How long this improvement lasts I don't know, who knows what this beast is up to, but I do know to trust the chemo cause this would not have happened without it.   

Positive thoughts, it gives me hope for what may be happening in the rest of my body.

Still doing some bike riding, spurts through the wetlands maybe 14-15k , covered up from the sun, body in shape that is maintained through yoga stretches and poses with Monica.

Believe.

Recover:

I guess this is more about the body regrouping after the chemo blast, the chemo's work is to kill off everything in it's sights including my good cells. However once finished the jousting begins and the body recovers slowly and some of the side effects diminish, but that is no certainty. It's day by day.

I don't want to be included in the 'average' numbers with this beast though one day I may have little say in it. But I know within myself that positive affirmations spread wings on me that take me over and above what is laid down on the ground for me. 

So what else helps, easy for me I suspect, music is #1, listening to some music that is written and performed by close and longterm friends, one in particular who also has cancer and has be dealing with it a lot longer than myself is putting an album together. I'll let you know when it's released, he's from a time of 'Spirit of Place'. He was also a friend of my brother Bob, who this week has been gone for 20 years. Though he never really leaves me.

The tracks are stunning.

The top 3 favourites at the moment (# 1 for you Wayne, Mr President) are as follows:

1.  Song called 'Fear' by Blue October, a lyric sample follows 

'Cause fear in itself
Will reel you in and spit you out
Over and over again
Believe in yourself
And you will walk
Now, fear in itself
Will use you up and break you down
Like you were never enough
Yeah, I used to fall, now I get back up'

Great video, by the shore worth a look .

2. Peter Gabriel live with 'In your Eyes' 

3. Theartre Royal 'Incidental Friend'  

Oh the Go-Betweens are always in the mix.

Reading, walking, yoga add to the day, the only barrier may be from time to time is my secondary issue with the purpura (which has eased) where my platelets drop too low, we monitor this, so far no real hassles.

Ok so we are nearly at the '12 days' to Christmas phase I trust all your trees are up and families gathering amid plans for the annual celebrations, enjoy and we'll see you at Blog # 6 with further news of how this all going along.

It's great to have you around.....

Charles...xo