Week 3-4 Update - with possible daughter hack

The lowdown is - my favourite child is Bugsey aka. Bridget. She constantly uses initiative when helping out around the house, doesn't complain when asked to do a job, completes her homework and receives hard-earned B grades (with the rare b+). She fills in her homework wall and consistently maintains a neat room and workspace for all the homework she does. Now most importantly, she is the best footy player. To think she's only been at it for a year and a bit now, she goes in hard, and comes out with great results (usually with a b-e-a-utiful drop punt out of the tackle zone), then she follows it up and gets right back into it. Man, she's going places. Even more importantly, she has a brilliant sense of humour. Bridget nails execution of jokes, and is constantly cheering everyone up who is around her. You could definitely say she's my daughter. Now I wouldn't usually go this far, but many believe (including me) that she is possibly the next Jim Carey, Will Ferrel, Ricky Gervais, the list goes on. Also, she is the best checkout worker at Woolies, with that cheery smile and brilliant topics for chats (only if she can read that the customer wants a chat), I do not hesitate to say that I'm proud when I go though her co-workers register and get to say "DO you know Bridget, yeah well she is my daughter".
__________________________

I thought the best parental response to the above was to actually post it, and let the thousands of readers be exposed to what a dork she is.

Well I'm well into Week Four, having let Week Three's post slip a bit.

Week Three was quite unremarkable.  I am becoming less aware of my PEG site as the wound heals, so I am able to use my stomach muscles with less caution.  It is amazing how restrictive it is, not being able to brace your core muscles to do everyday tasks. 

A bit of a highlight was that Bridget's footy team had their first win in a season and a half.  It was a nail-biter too.  I was so glad to be fit enough to head out to Mt Barker on my own, and be, for the official record, the coach.  This is only because I can't be the runner this season, so the coach is listed as the runner and I hold the magnetic board and make a few suggestions.  The only rather large downer was that Bridget missed the game because of work - damn!

My lack of taste has really set in.  I do not have a 'sweet' sense at the moment.  It is very strange, I am very sick of it already, biting into a custard tart, or a juicy pear and just getting nothing.  Water is very hard to take.  It feels waxy and has an unpleasant taste. Alison bought numerous cordials for me to try and find a mix, as I need to be drinking two litres a day.  After three cordial flavours, lemon juice and many combinations of these, I have settled on cups of weak black tea and Bickford's brown lime (or cold tea) in the drink bottle.

But in general I felt great in Week Three, I maintained my weight at just above 74kg and ate, slept and was able to do most activities during the day.

Week Four is a chemo week.  The second of my three rounds of chemo, so it was with mixed feelings that I climbed the stairs with Alison to the Cancer Clinic.  I was of course not keen on being loaded up with a cell-busting chemical, that would take me back to where I was three weeks ago, but at the same time I was keen to get onto that Week Four sway bridge so that I could get over to the other side with only one more Chemo-chasm to cross.

We had our initial meeting with the oncology registrar.  She hadn't had a chance to peruse my notes - for which I would have been happy to wait another 10 minutes - but she was very professional and certainly had the upper hand when we realised that I hadn't done my homework.  My one job, apart from my daily rituals, was to get a blood test the week before.  It turned out not to be too much of a drama, but it did cause some delay.  The two infusion nurses tending me were lovely about it, little did they know that I had more dramas for the whole infusion team up my sleeve!

I lay back in the recliner as the nurse struggled to get a vein.  Two strikes and you have to forfeit, so it was down to my other nurse to get the job done, which she did.  First they had to take bloods - oops - then they set up my fluids, as by the time the blood results came back, they would still be going, so worst case scenario, I'd be walking out with a litre of fluid - I'll take that!

As it was the bloods were fine.  Alison went of to tidy up some loose ends at work and I started to get drowsy, having had my new nausea medication, olanzapine, which does the opposite to the dexamethasone.  Actually I am still taking the dex but only a half dose, so the olanzapine is winning this battle.

There are lots of toilet runs during chemo - for me anyway.  They load you up with about three litres of fluid over the four hours, so it's no wonder the the whizz rate increases.  Well, on about journey number three to the toilet, wheeling along my clumsy, top-heavy dance partner (fluid hanger), we had a bit of an incident. I managed the toilet affair with grace, and was back in the main area when I reached for the hand gel on the wall.  My infusion plumbing got caught and I ripped the whole cannula out of my arm spraying cytotoxic cisplatin everywhere, the cannula relieved of its back-pressure came to life whipping back and forward, spraying the other infusees and nurses indiscriminately like and angry cobra.  Well it didn't do that, but if you saw the scene 10 minutes later you would have thought so!  It actually just dripped on the ground and a nurse rushed, at a safe speed, over and turned the pump off.  I figured this was about a four hand-towel spill, maybe worth a small 'Shamwow'. Boy was I wrong.  It was all hands on deck.  This is not a Drill, I repeat this is not a Drill!  A nurse commented that she hadn't seen a spill like tis in her 20 years - oops!  The toilet entrance soon looked like a scene from a movie, 4-5 nurses fully kitted out in PPE, reading the manual as they lay spill gel and a containment boom around the site.  My nurses were re-assuring me that it was no big deal, but of course I wished my recliner would absorb me as I watched all the nurses being put at risk to exposure and being taken away from their own patients because of my bungle.  It was easily two hours before the energy around that zone finally dwindled and the PSA was left to give the area a final clean, before it being declared open to toilet traffic once again.

I am pretty sure that every nurse involved in that clean-up made an effort to catch my eye in the next few hours, and either verbally or non-verbally let me know that it was all part of the job.  I now have another reason to be nervous about my next infusion - must remember -
Do not spray cytotoxic chemical at people
Do not spray cytotoxic chemical at people
Do not spray cytotoxic chemical at people
Do not spray cytotoxic chemical at people
Do not spray cytotoxic chemical at people

That should do it.

So far this chemo week has been a joke - call yourself a f'n 'chemo week'?

O.K, it hasn't been fun.  But the adjustments that my Clinical Practice Consultant made, have done wonders.  The legendary Michael F, has the title CPC, but he also comes under the umbrella-ella of the wonderful bunch of nurse practitioners.  Where a specialist may not have elicited all the information from my first chemo week, Michael, with his nursing background, carefully debriefed me after the first week to 'make sure the next one is easier on you'.  He made the change to my meds, which I believe, has been the main reason for me having an easier week - thanks mate!

Today marks the halfway point in terms of actual RT appointments, I'm 18/35ths of the way through.  Of course I know the shape of this course, so I know that the first half was walking from Glynburn Rd, to the bottom of the waterfall, the second half is the climb to Mt Lofty, once I reach the peak (35th RT appointment), I still need to get over the last chemo and the built up radiation. 

Still it's a milestone and I'm taking it!

You little beauty!

Warming my arms up to make it easier to get a vein.  Hard to stay awake with sedatives and warmed blankets wrapping both arms!

This is NOT a DRILL! I repeat: This is NOT a DRILL!

Note the manual in the bosses arms

I'm up for another wee, but they haven't got my last wee incident cleaned up

Wishing the recliner would fully engulf me 

Start of Week 4

The wonderful RTs fitting my mask

Being Zapped!

This is not hat hair - this is RT Locating Mask hair!

Week Two - Meet One of the Team

So I'm through my second week of the 7-10 week haul.  The second week is NOT a chemoT week.  The second week is good!

I mentioned previously that I came good on the Saturday (12 May), and that form has stuck with me the whole week, through to today (Sunday 20 May).  The nausea and resulting lack of eating caused me to lose a fair bit of weight over the chemoT week, about 4-5kg.  I now have chicken legs and no butt.  I wear a belt, so the 'no butt' is not a problem, and frankly I won't miss the wolf whistles every time I wear shorts, so the chicken legs can stay.
I have been eating like a teenage boy on a growth spurt, and have used my PEG tube 3-4 times this week to really make sure my weight stabilises.  I've managed to claw back a few kilos from my metabolism, which I think is racing along in a justifiable panic about the toxins and radiation attacking my body.

The week-daily radioT is starting to build up and cause some symptoms, with some mouth ulcers, mild throat pain, reduced salivary function and adjusted taste, taking some of the joy out of eating.  On the other hand, it is also building up and opening a can of 'whip-ass' on my neck tumours, which I feel are down below the size they were when I first detected them.  So that is encouraging.

Highlights this week include some awesome soup donations, sleeping through the night and my father and sister replacing my rented recliner, which you sat 'on', with my parents old recliner which, if you get too close, reaches out, grabs you and gives you a big hug.

This week I introduce my new single-episode segment; 'Meet The Team'.  I have my awesome team of medicos, but I also have my self-assigned support team.  Today I would like to introduce you to Sean Bushby from The Physio Studio at Goodwood. When I asked my Radiation Oncologist if there were any complementary therapies patients had used, which he felt had some anecdotal merit, regardless of any scientific evidence, he referred me to Sean.  Sean is a physiotherapist with a holistic approach to his discipline.  He also has advanced training in dry-needling. 

I was referred to Sean, because over the last 10 years he has been working with head and neck cancer patients to minimise, or reverse the effects of the radioT on their salivary glands.  He cautiously steps beyond the localised focus of dry-needling and into the realm of acupuncture, needling points in my ear and pointer finger in order to stimulate my salivary glands.  Most of Sean's patients to date, have come to him post radioT, looking for reversal of symptoms. and he has had some wins there.  Over the last six months, and in my case, we are looking to stimulate function weekly, through the course of the radioT and then work on reversing any reduced production in the weeks following treatment.  I have had some success with dry-needling for other injuries and I feel very lucky to have come across Sean and the team at The Physio Studio.

So next week is another chemoT-free week, and a chance to try and get back to my starting weight.  Just to add to the load on my Primary Support Team (which is my formal name for Alison), Ned is having surgery on Tuesday, to correct a small hole (fistula) in his palate.  He will be in Women's & Children's overnight and will then have to prise me off of the recliner for a few days of convalescence.  All he really cares about is that he should only miss one week of footy, with the added bonus of not being able to practice his trombone for a month.  So looking forward to some shared time on the couch with the little fella - he is studying WWI, so there may be some war movies lined up.

Bring on Week Three!

Me and my second-favourite RT Nurse Michelle - c'mon I have known Sammy for a while!

 If a man eats a really oily focaccia, but no one is there to see him eat it, does it add calories? 

(Hence the photo evidence).

 Thanks for the soup! With very thickly buttered toast!

 Sean Bushby - like Pavlov's dog, I now only have to say his name.

Now that's a recliner - good luck getting me out of this Nedder!

Week One

Sorry about the break.
I'm going to wind back the descriptive, discursive style - if I can.  Just to get the message out.

Before Week One (Monday 7 May).  I had an emergency visit over the weekend due to PEG infection.  Wow! Did I receive A Grade care! (note  = genuine sentiment).

As an added bonus, it appears I had been harbouring a post-op infection for the last fortnight, from the tonsillectomy.  All the 'Sneakers On The Beach' ho-ha, was nothing to do with cancer.  It was just a big bloody infection. This had caused my tumour (lymph node) to get painful and HUGE, so we had become quite stressed about not starting the week before, as it seemed every day was making a difference to my state.  It was, I was swelling up and becoming lethargic.  I had night sweats, but no temperature - I was on constant paracetamol.  I just thought this was cancer baby.

Friday night I was put on antibiotics for my PEG infection.  I woke up Saturday morning a new man.  My tumour was back to a hand-full and painless, I was not lethargic, I had not had night sweats.  Oh my lawrd!  We realised what must have been the case and celebrated the new me.

Monday came and it was time to start.  I was well and truly ready to get this going.

It was ChemoT first.  The staff were awesome, the feeling in the place was positive, fresh and new.  That really mattered.  A comfy recliner, a book, TV (no Berts), Blog to do (didn't get to it) and four hours to kill, while they boosted my fluids, poisoned my cancer cells and then boosted my fluids again.  The time went quickly and between a few meetings with health professionals, Alison's company and fair few trips to the toilet holding my fluids stand, like you see in the movies, I didn't get time to touch my laptop, book or TV (actually on reflection I did spend about 45 minutes - 3 pages - trying to finish reading Moby Dick again, I've been working through it for about six years now).

I was all dosed up and headed down for my first RadioT.  I knew it was going to be quick and painless.  I had a meeting with my RT nurse, who was by chance my old friend, the lovely Sammy Watts.  What a nice touch to have a familiar face for my week-daily visits.

I went through the mask lock down, which must be hell for the claustrophobic, but in which I was able to go to a happy place.  The RT only takes ten minutes or less, so I was on my way before I knew it.

Dosed up and with a container full of more drugs and many instructions, let's see how this week would go!

Well holy flip - Tuesday to Friday was very very tough.
Nausea - easy to hear and disregard - but debilitating, especially when I was trying not to loose weight and keep up my fluids without using my PEG for 3-4 weeks.
Reflux - the dexamethasone used to kerb nausea, caused reflux and I could not get comfortable at night.
Chemo Brain - thinking, talking, reading, watching television  - they all made me feel nauseous.
Night Psychosis - a big call, but I think the speed in the dex had me all over the shop at night.  I was constantly pondering the most bizarre hypotheses over and over all night.  I did not sleep at night for three nights.
Other than that it was pretty good.

No, It was a dog fight.
I was flailing about, delirious and wounded in no mans land, caught in the barbed wire - Alison, still running her business and this household - dragged me out of that shit hole.
As I recall, she could only spare one hand to grab hold of me, but it's all she needed.
A very strong woman, my wife.

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On Saturday I came a lot better.  I went to Ned's footy - where he played up in the 'Saturday Team' and kicked a goal! - as I walked past the obligatory BBQ - which I had actually been rostered on for, thank you so much to Bill Pattison for manning that post for the morning - I held my breath, but caught a whiff and it didn't make me want to throw.  About 20 minutes later I had a revelation.

"I could go a bacon sandwich..with a fair bit of sauce"  This was profound after the week I'd had.  Alison knew the importance of it and had legged it round to the barby in minutes, carefully picking out the right bits of bacon and following my sauce instructions to the letter.

What a change!  Later that afternoon, I had another revelation "I could go a schnitzel!" WTF.  So we ordered schnitty packs for the first time in out 17 years in this house, and I watched the Power beat the Crows, I worked my way through enough of it to make any 75kg man would be proud of himself.

Things have not been quite so simple since Saturday, but I have certainly had it a lot easier and am well pleased to have two full weeks before my next ChemoT.

Today I met with M F, my Clinical Practice Consultant.  The guy is a legend and has made up a pharmaceutical plan which seemed to be based in some very sound science, on how to avoid another week like last week.

Coming up for me is the effects of RT starting to kick in. External 'burning', throat pain and ulcers.  And my two more rounds of ChemoT on top of that.  Possibly a big dose of naivety, allows me to think, it can't get much worse than last week. We'll see I guess.

Thought this was the Gideon's Bible at first.  Was much excited to see a book I have spent about three years enjoying, placed like a bible on top of the pile.  Is there a Gideon's equivalent for Such Is Life...the Furphyions?

My first day of school

Stop! Chemo Time

RadioT and the creepy mask to locate me millimetre perfect

The Lovely Sammy Watts....fa fa fa fa fa fa fa fa (Kinks fans)

Typical friendly RT 

Hello Endone My Old Friend

So after never having had surgery in my 48 years I was heading in for my second session in three weeks.  This one was for the PEG insertion.  I still had the option to pull out of the procedure without copping WTF looks from the health professionals.  They'd squeezed me into a window that appeared and knew I (we) hadn't had long to weigh up our options. But as we sat in the right turning lane, the Darlington civil works going on - at a not too frantic pace - around us, I felt fully committed to our decision to go ahead.  Having the PEG in place felt like a secret weapon up our sleeve.  One of the main down sides was that patients with a PEG were more likely to suffer neck muscle and swallowing problems because they had not maintained their eating.  I am determined to push through the throat that has been blitzed and the nausea, to eat and drink through as much pain as I can.  The PEG is there for topping up hydration and nutrition, if I just can't keep on top of the weight loss.

No hotel-motel lobby for me this time, this one was being done publicly.  We made out way up to the Endoscopy ward and checked in - Name, Rank and Serial Number (NRSN) for the first time that day.  I got my dog tags (plastic wrist band) and sat back down amongst my unwell peers, trying to block out Kochie and the gang as they regurgitated their monotonous formula of east-coast, saccharine, multicolour marketing - way too much to take in the morning! Was only there for about an hour before I made it to the 'NEXT LEVEL'.

I was ushered into the green room.  NRSN requested by a really friendly and nerve-settling nurse, and I offered my arm, a finger and opened up an earhole ready for some obs.  Still 'young and fit'!  Turns out we had a mutual friend, typical Adelaide (Hi Julie W, if your watching, she used to nurse with you).

I got the curtain call. I was off, a cheery PSA dodging and weaving my barouche to theatre like a master.  I got to theatre and was wished well by PSA Schumacher.

Everyone in theatre was very friendly and engaging and reassured me what a simple procedure it was.  The surgeon did explain that I would not be under full sedation and mentioned that I might feel some pulling and pushing. Ummmm....no.  No. Not really part of the plan.  I tried my best to convince the anaesthetist to load me up just a bit more...she smiled at me annnnnnnddd I weeeennnn....

So I woke up in Recovery Ward 5D.  I had a room with a view.  I could seriously see the western horizon.  I was only sharing the 4 bed ward with one other guy - that would change.  My nurse seemed nice.  I could buzz for help without causing a CODE BLUE Resus Team to invade my room - unlike my FPH stay.  I wasn't too uncomfortable, 4's and 5's. But at one point it got a bit worse, and I was offered Endoooooonnnne!  'Hello Endone My Old Friend'.  I knew the digestive complications of long term use, but I could tell this was not going to be days of pain, so I enjoyed my single use pharmaceutical with no worries.

OK. That sentence is slightly concerning, as it makes me feel like I would be an Endone addict if I had the opportunity.  Well No.  I know I have more control than that.  When I realised, in 1994, that I was loosing the hours of 11pm to 4am to playing 'Age of Empires' on my new $2,400 desktop, which I had loaned the money from my Nana for, so I could pass my teaching degree.  I pretty quickly, like within a week, realised that I had a pre-disposition for gaming addiction.  So I took all games off my computer except, golf and pinball.  I could not play them for more than an hour.  Same with Endone.  If the idea of being addicted is not enough, thankfully the drug companies put the side effect of constipation in there, just to make sure.

Anyway I woke from my peaceful sleep, to a new room mate directly opposite me.  Poor bugger had some vital organs playing up.  I had judged him to be about 60ish from his voice and general nature, I hadn't really seen him as his privacy curtain was drawn - as it should always be unless requested otherwise, nurses of the world.  After a few NRSN calls from him I confirmed he was about 6 months older than me - whoah.

I'm calling him Bert, just to make him seem older.  Bert was set up with a PCA, I heard them say.  Hmmm...what was a PCA.  I was pretty happy, I got it - I googled it later.  I'll title the next blog with the answer - don't google it.  So they kept telling him to press the button, for more fentanyl.  They constantly asked him his pain score.

Pain Score.  I love the pain score.  What is your pain score between 0-10, if zero is no pain, and ten is the WORST PAIN IMAGINABLE.  I have had to say it many times, when I worked for SAAS, so I have maybe put more thought into it than non-Health folk.  But taken with actual signs and observations I think it can be really useful.  Not so for Bert.

Pain score requested "ummm.....orrr..I reckon 9 or 10".  NINE or TEN! WTF.  Ten is the worst pain imaginable.  I'm thinking bamboo shoots up toe nails, I'm thinking Daniel Craig  in Casino Royale and the chair with no seat (which I now see is called a 'Dutch Scratching').  So that's a TEN, let's work down from there.  Spending 6-7 seconds calmly considering your score with a few 'umms' and 'arrhhs' chucked in, rules out a nine or a ten I think.  The nurse pondered for about three seconds and said "OK, we'll get you some Panadol".

Bert may have been a private patient in a public hospital or he'd forked out for the TV access.  No worries, I suppose they come with headphones in case all four of us were watching.  Or the little speaker in you bed controller right next to your ear.  Nope.  I seriously spent fourteen hours listening to channel nine.  The magazine shows, the renovation shows, daytime, prime viewing, the ads.  Ahhh.  The curtain couldn't stop the compressions and rarefactions of this pollution reaching my ears.  I realised it was beyond my control and had the wisdom and mental power to let it wash over me.  Until about 2am.  I was woken by Berts snoring, blaring over the top of a home shopping informercial.    About twenty minutes later I had my obs done.  So I mentioned to the nurse that maybe it could be just snoring or just TV.  I asked if she could mute it while Bert was asleep.  She smiled sympathetically, possibly also going a bit mental at the constant rubbish coming out of that corner. Ahh..she get's it.  No she didn't.  Sticks her head into his area, loudly asks 'are you alright mate?' he waked up and reassures her he is, she gives me a look like 'hmm..he was obviously still watching it..can't touch it now'.  WTF.  What about a curfew at a certain point on the f'n RECOVERY ward!.

I drifted off to sleep, but was woken as the dawn was..actually still a fair way off, to a familiar sound.  The sound resonated inside me and instead of the nauseating feeling I had been getting, I had a sense of being at home as a nine year old.  I was comfy and maybe had a bowl of soup and some toast.  Ohhh, I was loving the TV now, what was it?  Ahhh...the 'Skippy' soundtrack. It was the beginning too.  I listened to the episode drifting in and out of sleep, seeing the sights and sounds of National Parks in the 70's - I guess a bit of a connection with my own grandfather, who was a Park Ranger at Belair for many years.  He didn't fly choppers, but they had their fair share of dramas and there were still the clean cut bitumen roads winding through raw scrub and sandstone walls defining the built up areas.  My dad had grown up in the Long Gully Kiosk, so I guess he'd had a something of a 'Sonny' upbringing. I didn't hear Clancy's voice in that episode, but it didn't matter, Bert was forgiven.  The hours of noise were forgotten in that 30 minute episode.
I guess the Endone hadn't worn off fully.

The morning came and the TV stayed on.  The morning obs and doctors rounds, and I was ready for home.  As packed up I noticed something missing? The noise.

I snuck a peek, and there was Bert.  Mid-morning he'd had enough of the television.  He'd turned it off and was fast asleep.
SSTM (Small Snigger To Myself).

Whoah! Some precarious jug placement.  I can see some 'Champagne Comedy' being set up here.  

Wearing Sneakers on The Beach

Have just got back from staying at Jodie and Andrew's wonderful house at Middleton.  It's a Spurr family tradition to spend a week down there in the April school holidays.  Always a nice week, if you can string some consecutive days down there.  This year had a bit of a different feel for me and I guess everyone down there.  I was coming off of my tonsillectomy, so hoping to be pretty much up and about for what is usually a very active week.  Ned and Bridget are both enjoying 'surfing', but Ned particularly is trying to push it to the next level.

I was a bit flat for most of the week and feeling a bit nauseous - annoying.  I managed to get out for an 'early morning' (Ha! In the water by 8:30am) surf for two mornings.  It was really nice down there if you beat the wind.  It was so nice getting out the back with Ned and seeing him improve.  I do feel the need to state that I can't surf to save myself - I just enjoy getting out there - Ned has a bit more hope of actually becoming a surfer.

On the last night, I had a crap night.  Ned and I had planned to get up and go out for the last morning, but in the wee hours of that morning I knew I was not going to be up for it.

When I woke him, he still wanted to go out on his own - good lad. We made the familiar walk 6-700m to the beach. Him in his wetsuit, me in my bloody civvies, walking the dog.  It was nice down there.  'Out the back' was achievable for him this morning, but it was nasty enough that he wasn't going to go out there on his own.  I stood there watching him muck around in the shore breaks - having a ball - getting a lot out of the session, practicing 'popping up' and doing what he had done all week, making the best of it, without my usual support.  Watching him out there, I looked back on the Middleton Week 2018, compared to those in the past.  Normally, there is not an hour that goes by, that I am not either doing something active with him and others, or I'm booked in for it after I finish what I'm currently doing - that's how I like it.  I reflected on this week, he'd asked me for the odd kick and the occasional beach session, but always with a tone of 'if you want' and never with the usual persistence and insistence of a puppy wanting you to throw it a ball.  Standing out there on the beach, in my casual clothes, I felt so out of place, and it dawned on me how much my illness had affected the little dude's week, and how much he had made the best of it.  Of course I had affected everyone's week.  They were all changing their expectations and making sacrifices because of me. I really hadn't gone here very often, but my only company was the dog and the wind and noise was picking up, so I let myself go - and fucking lost it for a couple of minutes.

I had let myself wander out of the moment.  Ned nailed a clean 'pop-up' on a little break. Hand by my side, I automatically made a soft fist releasing my pinky and thumb, ready for the 'shaka' that he would be expecting us to share after this little victory.  He fell of the wave as it died out, popped his head out of the white foamy soup, shook off the water and looked my way for a moment, sharing the quick gesture - him asking me 'did you see that, and did you think it as alright.  Me replying, 'yes I did see it' and 'yes you nailed it'.  I'm confident I managed to leave 'wish I was out there with you mate' out of the gesture, but if I didn't leave it out, he didn't see it anyway, he was already racing back out to get his next one.   The heat in my cheeks had gone, my eyes only watery because of the breeze and brightness.  Phew! I was back in the moment.

I didn't love wearing sneakers on the beach.  But there's worse things someone might have to do, and it's not going to be forever.

TumourWatch6 - A Timeline

COMING UP - Commence Chemoradiotherapy on Monday 7/5

NOTE: A couple of the posts have been updated, but I have found out that updates do not trigger an RSS feed email. I'll try to do shorter posts and complete them in one sitting.

Tue 1/5 - PEG (Percutaneous Endoscopic Gastronomy) fitted.  Was sedated, not GA'd, but didn't feel anything.  Spent the night in Ward 5D.  A bit of pain being managed with paracetamol and Endone.  The PEG has been tested and is viable!

Tue 24/2 - Met Dr P, the Radiation Oncologist.  Found out that my tumour was too small for the trial.  He detailed some of the short and long term side effects.  He also advised that I would be receiving three levels of dosage.  High on my right (tumour side), Medium on my throat - no macroscopic cancerous tissue remaining, but margins too small and low on my left side - no cancerous tissue detected, but a standard precaution.  I also had my locating 'mask' fitted. An interesting procedure - you would not want to be claustrophobic!

Fri 20/4 - Went for Audiology appointment - the chemo can damage hearing temporarily or permanently, so they like to get baseline data.  My hearing was all pretty good.
Then went to meet the oncologist Dr S (I forgot to ask him if he cared about being named - I feel like he would not have cared, but may have paid me out for doing the blog!).  I might qualify for a clinical drug trial - Avelumab.  I had to go for another CT scan at good old Repat Radiography for that.  If I am approved I will get my normal treatment, which at this stage has not changed from yesterday, and I will get the Avelumab (or saline - damned scientifically controlled studies) on top of that.
Even if I get the placebo, I'll let myself be tricked into receiving all the benefits of the placebo effect!
My throat is coming around.  No Endone today, stopped the Panadol Forte late morning, so I'm on supermarket painkillers..so far so good.
Got a bit 'backed up' with the Endone and codeine - which is no fun (on the border of too much info there sorry), but seems to have passed.

Thu 19/4 - My Birthday!  Met AProf Ooi in the morning.  Discussed results of biopsy.  HPV 16 present - we knew that already, but confirmed.  Primary tumour in tonsil was all removed, no cancer in the throat BUT the margin of non-cancerous tissue on the tonsil-tumour mass was only 0.7mm in one area, which is well less than the 2.0mm margin that would have 'cleared' me of requiring further treatment to throat. Bummer!  The tumour was also a bit smaller than expected, so my TNM Staging is now T2 N3 M0, which doesn't translate to anything meaningful, but will be of interest to some.

It looks like the treatment will not involve further surgery except as a last resort.  The current unconfirmed plan is 7 weeks of RT (every weekday) with a concurrent hit of chemotherapy once every three weeks.  They reckon that should do it, but 'salvage' surgery if required after that.

Wed 18/4  - Advised that HPV is the cause of my cancer - A bloody great day!

Thu 12/4 - Attended Flinders Private for observation and biopsy under general anaesthetic.  Dr Ooi had also suggested that he might remove the tonsil/tumour if there was a margin of non-cancerous tissue between the tonsil and the wall of my throat.  He did remove the tonsil.  Great news as if it was not surgically removed, it would have to be radiated.  The lymph tumours will still be radiated prior to surgery, but that can now be limited to one side of my neck. A Big Win!

Wed 4/4 - Had first appointment with specialist Dr Eng Ooi from Adelaide ENT Surgery based in Flinders Private.  He confirmed that the primary tumour was on my right tonsil.  Had a nasendoscopy, and to our relief the tumour did notappear to involve surrounding structures such as tongue, vocal chords or epiglottis. The biopsy results could not confirm whether it involved HPV-16 -but Dr Ooi suspected it and that was the outcome we want as it is easier to treat.

Tue 3/4 - Attended GP - it is not lymphoma - crap! - it is a secondary squamous cell tumour - the primary tumour is suspected to be in my head or neck, based location of secondary and because high level of squamous tissue in that area.  Later that day I re-attended Repat Radiology and had a head CT and neck X-Ray.

Fri 30/3 Wait four days for easter...we pretty much decided that it was lymphoma.

Thu 29/3 - Attended Bensons Christies Beach for an ultrasound guided fine needle aspiration (FNA) biopsy.

Wed 28/3 - (Dark Day) GP called after receiving results - saw her in afternoon - first solid concerns about lump being a cancerous tumour.

Tues 27/3 - Re-attended GP - sent off for bloods and an ultrasound at Repat Radiology that afternoon

Wed 21/3 - Day off because of hand - went to GP - GP decided to see if the antibiotics affected lump

Tues 20/3 - Lacerated finger with blade - tendon damage - on antibiotics til Mon 26/3

Mon 19/3 - First noticed lump in my neck while shaving