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