Blog #7 Hard/easier to Swallow)

Trepidation:

So the season of family get together's sharing Christmas cheer and presents plus the New Year intro into 2020 has come and gone and I've only busted 3 resolutions, how are you all going with yours..?

8 January 2020 marched up fairly quickly and my extra week off chemo was over and away we went (Tom my mentor and I ) to the Frankston Intergrated Cancer Care Unit to be infused.

One familiar face today a woman in her 50's with the 'uncle festa hair cut' was in for a short burst. She loves that I call her 'fess' if she didn't she's big enough to wallop me and I reckon I'd stay on the canvas. As she left she said I'm sorry I have to go before I watch you listen to your music, I hope to see her again, she was off to the movies to watch 'Cats'.

The Pharmacist was there today with the nurse and they looked a bit glum or worried about what they were going to tell me. They decided to continue with the chemo despite a higher toxicity level in my Liver.

However I've been on a course of antibiotics with a bug that rose my temperature to a nasty level but workman like over the next 24 hours reduced it back to normal. Plus a few wines and champagne to go with the season, that I may have to forgo for a while. So be it. We fathomed the Liver is awake and doing it's job so no fear there, the levels can change so quickly day to day.

What I can say is that my food intake is pretty much normal again as my throat tumour has lessened I suspect 'cause I couldn't eat much (apart from smoothies, soups, laksas, pearly noodles etc) before the chemo, winner. I still chew a bit more, never know when this beast strikes, for now the throat mongrel is on the canvas.

So the three hours odd travelled fairly quickly with the strange mix of 'new romantic music' which featured 'Echo and the Bunnymen' with songs called The Cutter and The Killing Moon to New Order  with Waiting for the Siren's Call even went to Kids in the Kitchen with Current Stand and Mi-Sex with People, sure a step back but they were great songs.

I was reading 'Tea and Scotch' by Roland Perry a fabulous insight into discovering the man behind the legend. Don Bradman, written so differently and searchingly which escapes the numbers of the great man and provides his inner thoughts at every challenge and there were plenty some weakened him and many more made him strong. A well credentialled author helped with interviews in his lounge and study.

Bradman's love of music to motivate, to calm after a day of centuries, doubles and the odd triple and to just chill is very evident in this book, he wrote his own compositiion 'Every Day is Rainbow Day for Me'. Fitting.

A cup of tea at 8.45 am and a scotch at 11.30, it put's me in the extra chair in the corner I return to it when I resume the book and I listen to them chatting, happy place.

So why is this blog titled Trepidation, well yes, it's the half way mark of 8 infusions which will tell the tale of progress or not, when the scan results from this Monday 13 January are revealed on Wednesday (15th) at my meeting with Dr Ben my oncologist.

Worrying is out, it doesn't help, do I go a bit dark on it, yes, that's where your light comes in so I push through that barrier and get on with my day, my sleep and my greeting to the morning, my friend.

With positive mind and will to mend, let's see how we are and if the 'Magpies' are in front at half time, no matter what we still have 4 infusions to go. The second half if you like.

I've been thinking about a song though that takes me to Monday and early this morning Mr Jimmy Buffet jumped into my head from where I don't know, but it did.

'Come Monday It'll be all right,
Come Monday I'll be holding you tight.
I spent four smokey days in the grey Seaford haze
And I just want you back by my side'

Hope 'Jimmy' doesn't mind a little lyric change.

Songs are jumping all around in my head just now and I can't stop them. 'Kiss My Name' by Antony and the Johnsons has come to my play list along with 'Cattle and Cane' by the Go-Betweens as the hackles and spark rise. The latter now featured in a French Film to come at the French Film Festival later this year, it's called 'Amanda' I'll see this and say you have your dream Grant (McLennan} you superstar and founding member of the Go-Betweens who left us in May 2006.    

I better stop here, we'll talk some more next week when some half way results are revealed.

Thank you for supporting my energy outlet with my story your support is amazing and I value it so much, I'm Ok your Ok.

Much Love
Charles...xxoo

NB; Congratulations Wayne & Sue on the arrival of your new Grandaughter so what's the song...?

Just now and this one goes back a bit, 'A little ray of Sunshine' by AXIOM (Glen Shorrock) loomed up quickly.

Enjoy.

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 









 

Realisation Hard to Swallow Part 4

                                                   Realisation

                                         Hard to Swallow Part 4 

I've looked at how animals and people carry drinks over the years and in some cultures a chain around the neck has been the way to go.

Those of a certain vintage would recall the 'King' Graham Kennedy (IMT days) starring in the now Australian classic film 'Don's Party'. If you check it out you'll see he has a chain around his neck with a beer stein attached.

Legend has it that St.Bernards carried wine and/or brandy in barrels around their necks to help warm victims of avalanches until help arrived, though that is more a myth.

In the maze of being in night clubs in past years I recall women having 'mardi gras' drink holders around their necks, very hard to get close to on a dance floor. Though the music that played where I was, was not cheek to cheek, that came after, they still might be available now. Anyway you get the picture.

So for two days every fortnight for a least the next 14 weeks I wear a bottle full of my cancer drugs that is connected to my chest portacath that pumps the 'cure' into my body. Great for going out shopping and day trips, I seem to always have space to move, people are so kind. Mine is for life.

Oh on the other day of the fortnightly ritual I sit in a very comfortable arm chair that lifts my feet and adjusts to my back at the touch of a button whilst my drug ordered regimen in a bag beside me pumps the first lot into me. Such glee. 

You're right. I'm cynical and I'm angry, the 'whiz' kids have told me 'oh Charles, this insideous disease has been in your body for months, many months maybe even for a year or more and your at Stage 4'.

How the hell do previous scans, xrays, pathology tests I've had over that time did not show any remnants or particles of the tumour that now riddle my liver that started in my oesophagus and likely elsewhere as we speak survive and prosper, though that is not confirmed or outruled for another six weeks when next PET Scans are done to see what the chemo has contained or shrunk.

Anyway it is what it is, Que Sera Sera.

So the fight is on in earnest now, cells jousting, side effects evident and likely to expand with further infusions. That's ok, I remain positive and I believe in the course I'm on will lead to a winning outcome of some sought. It's really early days with the chemo, body is in good shape and I've an army of support that in all honesty I'm staggered by and cherish..

Monica and I are working through a diet that allows me to swallow foods that are essential and some that I love that I can still handle in some form or another. You see I can't walk through a shopping centre and go wow I'm hungry I'll grab some sushi, some chinese, a pizza, a chicken whatever or a pita pocket salad roll because of the difficulty I have in swallowing. If I was to sit and try to eat any of those foods it would be a disaster.

So what is being positive about..? For starters it's about believing in yourself, trusting what your body can do and being a bit gentle on yourself, Planning things as you would normally do. December now is booked, Monica and I are taking Christmas to Christof at Colac we've got some great gifts for him and we'll take whatever it takes to ensure his comfort and joy (and ours).

My Collingwood membership arrived today with all the trimmings, so the fixture is on the fridge and games selected, all of them if I can. My mate Ross has Boxing Day tickets to the cricket ready for me and I really want to go, it's about how I'm traveling at the time, we'll find a way.

Music, well that's a constant, my son (Leon) and my friends share so much of what they play and have, it's never ending, aways exploring, ever tasting and challenging the boundaries where you find it.

One of my music loves is following the site Right Here:The Go Betweens Appreciation Society, such wonderful people on line that makes you believe there is hope in the world after all. Robert Forster is traveling the States, Great Britain and Europe just now gaining all the accolades he and the band have deserved and earned over now 40 years.

We are coming up to the weekend when 20 years ago my brother (Bob) past away, 1999, still fairly clear to me the occurrences of that weekend, I wrote a blog about him in March 2018, it's called  Bob Coy Lorne Artist 'Motion in the Ocean , Breeze in the Trees', you can find it easily at acoyview.blogspot.com worth a peek.

Yesterday my oncologist was happy with my demeanour, noted my positive outlook, we go to the next infusion 4 December so we get the body in shape and be ready for whatever side effects want to come at me.

Keep safe, enjoy the season, one of my brother's mates whom I'm lucky still to have in my life, who himself is a brilliant singer songwriter and guitarist/musician said these little prophecies to me the other day, they read:
'Keep your sense of Humour'
'Have no restrictions'
'Drop off the baggage'
'Drop Guilt'
'Don't be intimidated' and 'Do what you do and do it well'...

See you at Part 5 ...

Much Love
Charles...

Part 3 Hard to Swallow

                                                  My Current Health Part 3 

14 November 2019: Ok so Dr Benjamin Markman was not the 'white knight' I was hoping for, however on quizzing my son Leon on what a third or fourth in line to a white knight would look like, he said he seems like he is a Knight Errant.

There are a number of definitions you can place on a Knight Errant's head, I like the ones that liken him to a traveller, roaming the land doing brave things and helping people who are in trouble. Searching evil to slay, skillfull and adventureous.

In essence the story of the cancer and it's impact has not changed much, though this time it was mapped out when the chemo would start and how it was likely to be administered. The elephant in the room was time, Dr Benjamin responded with "Charles, I can tell you about averages and I can put you in that space, however right now we don't know what the long term effect of the treatment (chemo) is going to have on you, you create your own number".

I liked that, I said keep on searching Dr for your record and history shows you are up for reviewing clinical trials and seeing how they can be administered, so here I am, he smiled, maybe smirked, I continued my quizzing look.

Monica and I left the clinic with a wad of information about the side effects of the chemo that range in major and less major symptoms that in essence are too many to mention here.

Next Tuesday I have the 'portacath' fitted ready for the flow of fight again on Wednesday 20 November and Friday 22 November.

Yoga, Podcasts, Music, our Garden (Monica's really) and my army of family and friends push my spirits higher and provide strength to go at 'Carlton' with a positive mindset.

I love my food, but swallowing is difficult right now..

We are managing by building a diet that firstly, allows me to swallow with less difficulty, that carry all the nutrients and protiens I need with some variety.

I've moments where I forget to chew a piece of food 50 times or so and swallow and the oesophagus tail end jams up. You get a bit disorientated become anxious, stressed and sometimes panic a bit. So I bang my foot on the floor, swear a bit, try to swallow water or a little milk and finally once breathing is right the digest is completed. I'm keeping positive that the chemo blasts will reduce the tumour and clear the way for easier swallowing.

I'll work through the side effects and stand up and deal with those that linger, choice, I have none.

The weekend just gone Monica and I headed off to Seymour for the annual Rotary Club of Frankston getaway, it was fantastic to be among the friends/members enjoying fellowship, mateship and good fun.

Our cabin by the Goulburn River was cosy and warm as was every aspect of the weekend. Monica won the Backgammon in the cabin comp, led Yoga classes for the two mornings we were there with other yogies looking to have a great kick start to their day. It worked.

Our cat Shine, took a break staying with our neighbors eating poached chicken and occasionally crossing the road and sleeping at home. Thanks Jenny and Stefan.

This week the program commenced at Frankston Hospital in the Intergrated Care Centre, a three and a half hour session, briefing, testing, blood tests/counts and injections. The nurses are superb, knowledgable, experienced, caring and when necessary brutal. All grounds covered nothing left to chance.

The walk through the rooms saw people of all ages and sizes dealing with this insideous disease, they seem to take it on the chin, friendly, but with hidden anxiety knowing there are a million places they'd rather be. I wanted to be in the UK, Amsterdam or even back at the MCG or in a theatre somewhere or just home getting ready for a swim.

So next week looms huge with the treatment stepping up, in the meantime I've a years reading in all the booklets, printouts and instructions that are going to command my life for a while. So its study time, though this time its to study how to succeed through all this, remaining positive and valuing every moment added.

I question why and how did all this happen, there is no answer it just did, so I'll just fight it in every way I can.

Part 4 will reveal progress, I look forward to relating that and also having you join in on this journey so I can share the experience and off load in this forum, it helps so much.

I'm currently taken by lyrics to a song I've found through my favourite site (Right Here:The Go-Betweens Appreciation Society) one of our members noted a band called 'Theartre Royal' and a song called 'Incidental Friend'. The verse that got me follows:

'Ive stared in the eyes of the Beast
I've sailed round the edge of the world
I laid on my back on my bed
and dreamt of the places we'd go'

We'll talk some more soon.

Charles.










 

Hard to Swallow Part 2

                                   

                                         My Current Health Story Part 2.

31 October - Its been a tough couple of days as we get ready for my meeting with the surgeon today  to discuss next steps in what we need to do to rid of this cancer that's unwelcome and life threatening. It's strange really in the garden yesterday sweeping, watering and generally cleaning up my sweat smelt like the 'shit' thats in my body.

4 November - The meeting was at 3pm (31 October), the location was Mt Waverley, Monica was leaving work at 1.30pm and I was driving to Syndal Station from Seaford to meet her just after 2pm. 

Syndal Station, wow, 3 storey car park, parking surrounds filled, heavy traffic, heavily populated and preferred suburbs and surrounds for many. That's fine but for me I need to be near the beach, I'm a cancerian, how bizarre. I'm there at 2pm found a parking spot to wait for Monica. I'm a little upbeat knowing yes this is cancer and it's real but I'm sure the surgeon can dig some if not all of it out.

Monica arrives 3-4 minutes later and we have a coffee, a chat of expectation and head down to the clinic.

Into the waiting room, more forms and after a wait of 15 minutes or so the call comes, Charles Coy, yep that's me again, so down a short corridor we go into a very clinical surgeon's room.

I pull out my brief and page of 24 questions and are asked some preliminary information of when I first experienced the difficulty of swallowing. So I chatted on like scared parrot, babbling to the point where I could see this surgeon staring out the window and had other people to see and wanted to tell me my fate as he saw it.

He doesn't barrack for Collingwood and probably thinks the MCG is another clinic somewhere in Melbourne and really needed to move to his next appointment where the waiting room was overflowing with those clinging onto hope from his call on their situation for now and in the future.

So I asked the question what Stage are we at?  Stage 4 without any hesitation came the damning response, Monica said she physically saw my heart drop to the floor and not bounce back. His script read the Primary source (oesophageal cancer) had sent tumors to my liver that are too many spread far and wide for surgery to be effective. He did say that the cancer had been evident for many months and had been deceptive and hid at times from previous scans and xrays I'd had for pneumonia and purpura. That was a little hard to take.

At least and I say with some hope not despair that it's progressing slowly, but really who knows.

He had no futher answers, there was to be no surgery, he referred me to my new oncologist, identifying PET Scans and Chemo as the next steps. Thanks, the questions I had were not for him, unlikely he could answer them anyway, sure he showed me a video of the CT Scan and markings on my liver to confirm what he delivered to me, really that's all he had, so we left.

We hit the Monash 4pm traffic, what a mess that is, though it didn't really matter,the shock was till in the air, in my head and in my body and now in our car.

We were home at around 5pm and without much hestation strolled to the beach, sat on the bench,  maybe not stunned, but silent, aware though of what we had been told.

It was a difficult night, we didn't sleep we just lay there and came up with words to try and express how we felt. Some, likely most you can imagine, so there is no real need to repeat them here.

Friday arrived and I wanted to get on the front foot, the unsurity this thing completely obliterating me is the true heartache, the despair at night and all the little things that happen in your body you are just so aware of, like never before. Every moment counts to when the treatment starts.

I rang the office of my new oncologist and they had not yet received my file, however saw my name on a list and were able to book me in for Wednesday 6 November. They were receptive and so helpful and understanding, my anxiety was peaking, putting normal clear thinking at a distance they told me Dr Benjamin Markman was my appointed, I googled him. He seems the perfect fit, he has a history of being aware of new trials, new procedures and I believe has recently returned from Sweden being informed of the latest methods in dealing with the cancer I have.

Over to you Ben, see you on Wednesday, help me extend and do the things I love doing, mainly living.

The weekend just past held no new revelations, just further realisation of what we are dealing with, accepting (though I never will) what is ahead of us, learning to deal with my anxiety and getting on with life as we normally do.

I'm so lucky Monica is a Yoga teacher, we've done a series of sessions that have helped me deal with my emotions, loosen up a stiff neck and keep my body agile. Along the way in particular with the well-being aspect we discussed getting to know this person called cancer that's disrupting and threatening me. So we needed to find a name, we initially had the 'Colonel' but for some reason Ive settled on calling it 'Carlton'.

A nemisis in football terms to my side, but because of that respect comes into play, competition is healthy. I'm competing against it so I need to understand it, talk to it so maybe we can come to an agreemeny,in my favour. I know this seems odd, perhaps ridiculous to some, but this is so fresh, so damning, breeding despair I'll look for and consider anyway to deal with this better.

Today I called the Cancer Council, spoke with a cancer nurse, so understanding, so helpful, gave me information including a link to a booklet on my cancer diagnosis.

They also advised me of links to some worthwhile podcasts, Monica had already suggested this last evening so it was high on our to do list, just learning of the experiences of others and the support mechanisms they used, so all information helps. I guess I just needed some calm voices to understand how they dealt with the intial shock of discovering cancer in your body.

So I got out my Bluetooth Headset (thank you Astrid) charged it up and away I went, the podcasts were really helpful. Just people who were as shocked and anxietous as I am, how they dealt with it and outside of family and friends identified support groups that are out there that are really so close and willing to offer any assistance to ease the moment and calm the mind for what's next.

Whilst writing this blog today, I received a call and email advising met on Friday morning at 7.30am my PET Scans begin, they are done over some 3 hours, so I would think I would of been explored enough by then to establish how much chemo I'm going to have.

This week is filled with hope, the unexpected and on some days high anxiety where I need to train my mind better to have control over what may feed 'Carlton' to power more damage. 

Part 3 will tell us more about where we are at, looking forward to seeing Dr Ben go to work.

I'm a bit calmer today, nights are tough, don't know what happens when I eventually go to sleep. I'll get better at that, I need to.

'Out in the summer rain we will begin again...'

Charles











       

 



   

Hard to Swallow

   
                                       My Current Health Story -Part 1

Dateline- From early September 2019

29 October 2019 : Let's go back 6-7 weeks ago when I found any food I was eating was going down ok until it reached the gateway into my stomach. It seemed to digest very slowly, mounting up, not choking me, however being really uncomfortable to bear. I was not alarmed, thinking reflux or a temporary symptom of acid build up that would soon disappear.

It (the food) would eventually complete it's mission and collapse into my stomach, encouraged by water or any fluid within reach. I'd mentioned it to my Hematologist, I'm dealing with an Immune sytem matter called Immune Purpura, so it was a side issue that still did not seem important or a serious health risk at that time. We thought it might of been a result of the tablets/steroids I was taking to boost and maintain my platelet levels.

So we moved on, however the symptoms would not dissipate so I went to my family Doctor here in Seaford and told him about my swallowing food difficulties.He didn't hold back and immediately organised a referral for a Gastroscopy at Direct Endoscopy (D.E) in Frankston.

However my platelets were not quite at the number to ensure that there would be no internal bleed with the camera down my throat and the depths of my oesophagus. So a fortnight went by now back on the steroids until they (the platelets) reached an acceptable level agreed to by my Hematologist.

So I was ready and last Wednesday 23 October I went to D.E in Frankston. The time for the procedure was mid afternoon I'd done my fasting and I was thirsty but ok, just a bit apprehensive. I checked in and sat in the waiting room among people of all ages all sizes all with differing ailments. It was a darkish room where there was always people moving about doctors and anaesthetists, receptionists taking an extraordinary amount of calls and a front desk checking in patients to fill out forms that tell their story, I was now one of those.

A doctor entered the waiting room and said "Charles' so as no-one else moved I knew it was my time. I was ushered into a room met the Camera Doctor and the anaesthetists and walked into the 'procedure' room and rolled onto the hospital bed and told to lay on my left side and bring my knees to my chest.

The nurse stuck a rubber cylinder into my mouth and the anesthetist and I started talking football, nerves I guess.

He is a Western Bulldogs supporter and did not want to tell the doctor I followed Collingwood, wonder why?.. He was talking about the value of getting Bruce from StKilda I said Schache was going to be a great asset after another preseason and that 3 tall's are a crowd up forward we disagreed... I woke up 24 minutes later.

Glass of water, cup of tea and 2 biscuits later my stay in the procedure room was over. I was asked to wait in the Doctors room for the Gastroscopy results.

The diagnosis was described as an 'irregular' growth at the base of the oesophagus at the point of entry into the stomach. I was booked immediately for a CT Scan the next day Thursday 24 October.

The procedure included several biopsy's that would take a week to determine just what the growth represented.

Being a numbers man I asked the doctor was it a 70% chance of a cancer he agreed but upped it by 10%.  Upon leaving I was given two letters one for a Surgeon in Mt Waverley whom I booked to see Thursday 31 October.

I was also perscibed a tablet that may help my digestion, it gave me some hope. For the record I can eat a lot more normally since taking it. However it's another tablet I take to start my day, hate them.

I was a bit shaky after that and thought about all the years I'd been bullet proof, no more. I will say that antibiotics and there continual use weaken your immune system quite significantly, I link to a degree to what has happened with my Purpura and now 'irregular' growth at the base of my oesophagus to being hit with two bouts of pneumonia over a six month period that broke down my barriers in July 2018 and January 2019.

Thursday 24 October, time for the CT Scan, up to Frankston Private I go. Bit more light in this waiting room, some sad faces and some on their phones, no kids running about.

More forms and sign to accept any reactions good or bad for the liquid they'll pump into me I accept as normal and there is no shared responsibility for any dehabilitating aftermath. .

So I'm quickly called up and down the corridor I go and into the room where the uninviting donut shaped machine with a short tunnel in the centre sits.

Without the machine in use you can feel the x-ray tube power and x-ray detectors buzzing, infiltrating around you.

I'm told to drop my pants to my knees lay on the narrow table that slides in and out and under the tunnel, Oh they placed a white towel around the top of my quads.

I accept what is ahead and give the operator the all clear. She plugs me with a liquid that will show up any defects in my system, honing in on any acute and/or chronic changes in my system, next to crutch.

She says it will give you a warm feeling in your head and your body, did it ever, you could have cooked bacon on my head and boiled an egg with my spittal ( I know that sounds disgusting, but hey it's real).

Take a deep breath a recorded voice yells from above me and I gulp and comply, now breathe comes the next instruction, you bet I will. I'm honestly unsure how many slides in and out I had but I do recall doing as I'm told by the deep voice beaming at me at least 3-4 times.

It stopped, Relieved I got my senses back and stood up and re dressed myself, thanked everyone and left. Upon paying and leaving reception the receptionist said the CT Scan results will be sent to all the Doctors I'd noted.

I left, I was driven home by my Rotarian friend and Welfare Director Marie, I was again shaky, this time bilious and filled with anxiety but got home and fell on my bed, feeling relieved, headachy and all over weakened. Just not used to this I guess.

The days and weekend that followed brought moments of uncertainty, apprehension, unbalance and some concerns about the future. Never in my life had this feeling ever been on my what's next list.

Monica and I did housework on the cold, wet and windy Saturday, well I did some, and got up about as best I could on Sunday with ride around the new track that stems from the new Hybrid Sky rail in Seaford and followed it back into Frankston, got back as the rains came.

We come to today, the first day of this blog and the results that came my way.

My Hematologist is at Peninsula Private every Tuesday, I knew I had to inform her about the Gastroscopy and CT Scans. I called and spoke to reception (Lana or Jo, doesnt matter whom they both know me now) with Dr Kay in they would pass on the message and obtain the results of the Biopsy (rememember I'm not due to be told until Thursday 31 October) but they obviously need to know, Reason being the information of my current immune attack needs to be passed onto the surgeon I'm with on Thursday.

About an hour later I got the call, the biopsy shows I have oesophageal cancer-adenocarcinoma.

The surgeon on Thursday will have many questions from me as we prepare to do whatever it takes pending what stage I'm at for what lays ahead.

Part 2 will reveal some more, me, I've had my emotions explode today, my armour is weakened but not my will.

Out in the summer rain, we will meet again....

Charles...