Margins, PEGs, Modalities and Decisions

A bit of water under bridge since last post (not including the TumourWatch Updates).

I see I was complaining about my throat and looking forward to an appointment to get the results of my tonsillectomy biopsy.

As detailed in the TumourWatch, the news was a bit disappointing - that is we had already had the good news 'leaked' to us regarding the positive HPV16 association - but we were hit with the news about the 'margin' being too small. Margins hey! So I guess I would picture a cricket ball (my tonsil-tumour mass), the surgeon removes the whole mass, the inner core of the ball, the cork bit is the nasty little tumour and the leather outer is normal, non-cancerous tissue.  As long as that leather outer bit is thicker than 2mm, then they will consider that region as now cancer free and not requiring further treatment.  Most of my cricket ball had a nice thick outer layer, but in one area the outer layer got down to 0.7mm.  So because of that 1.3mm shortfall, I now have to have that area of my throat radiated - with a lower dose that if I had not had the tonsillectomy, but still a bit disappointing.

So now for another unexpected burden.  We were being asked to make a decision.  Whaaaaat! Some early advice from a mate who had come out the other side of lymphoma was to 'just do what I was told'.  I was ready for that.  Take this drug, rest, exercise, put on weight, eat the scratchy toast - I am your obedient patient awaiting your next command.  So please don't now ask me to make a decision.

Do you want to have surgery on your neck to remove the cancerous nodes - then have RadioT and ChemoT OR do you just want to have RadioT and ChemoT?  After a few moments of getting over the fact that the expert was asking me to make such a massive decision, my brain kicked into gear.

After some interrogation it was determined that there was a slight chance that after surgically removing the nodes they would find that the actual tumours were smaller that they had predicted based on UltraS and CT and they might be able to downgrade RadioT dosage a bit.  The more likely outcome was that I would undergo the pretty invasive neck dissection, only to have exactly the same dosage of RadioT and ChemoT anyway.  This was the response I was getting from a surgeon, who you would expect would have some bias toward surgery.  We were getting the idea that the non-surgical option was the go.

The next day (Friday 20/4) we met Dr S, the oncologist at FPH.  Tracey our nurse practitioner was there to hold our hands and help absorb, interpret and amalgamate the information and outcomes from all the different meetings.  What a fantastic service.  I am such a fan of nurse practitioners.  I had a mate who's wife was, as far as I could tell, involved with the phase-in of this awesome concept.  I also have a mate who is a NP.  It is just such a wondeful and rare example, of common sense bubbling up through the viscous 'gloop' of procedure, bureaucracy and politics that seems to smother health systems worldwide.  Anyway suffice to say that the funding for Tracey's role is much appreciated.  To have someone there as a liaison and an advocate across the different health professionals has been wonderful.  On top of all her expertise, availability and interpersonal skills, she can get you from point A to B anywhere in the FMC/FPH complex, so that alone is well worth it!

Dr S also presented us with the same choice.  He did not shed a whole lot of light on the decision, but he did refer to evidence that indicated three modalities were statistically no more effective than two modalities.  So he was basically suggesting that we don't have the surgery either.

We got the hint and declared that we had chosen the no surgery option, but there was a bit of 'well if that's what you want...hmmm'. Huh?

Time for the next decision.

Do we want to be part of a clinical trial?

The 'Javelin Trial' is a phase III trial of an immunotherapy drug called Avelumb, click here for more details.  Roxy Music wrote the theme song for the trial, click here for more details (It's actually Avelumab - but that doesn't really work for Roxy Music, so it is called Avelumb in Australia - you say Aluminum I say Aluminium, let's call the whole thing off!)

Once again, a decision to be made - it sounded pretty good to us.

We were well informed and more of a consensus, in the affirmative, was presented.

The only sticking point, was that my tumour might not be large enough.  So off to Repat Radiology we trotted for another CT Scan to see if it had got larger - I assured them it had!

Meetings were set up, paperwork was handed over, a one week delay in RT was set up - we we were assured was insignificant, but a few days later we were given the sad news, 'sorry sir, your tumour is too small'.  Once again it came down to millimetres.  It needed to be 60mm, it had grown, but only to 56mm. We were distraught! No, no we weren't. Tumour too small = happy.

Also, we were advised that based on the 8th Edition of HPV Head and Neck cancer staging - we would go from s Stage III to a Stage I cancer - 4mm hey! Due to the very recent nature of these changes, we will naturally be interchanging between the two, depending on whether I am telling my poor Mum (Stage I), or the general public (Stage III - ohhhrrr).

We were also advised that in a few years the RT protocols, for HPV positive cancers, will catch up and people probably won't be getting as fried as I am about to be - that is nice to know (I'm not being sarcastic - science in action!).

I am writing this retrospectively, and I went into the future just to follow that storyline.

Now back to the present - as per this blog - Friday 20 April.

Another decision to be made!

Do I have a percutaneous endoscopic gastrostomy (PEG) inserted before I start treatment, or do I try and hold off and maybe avoid it altogether? As the great philosopher Charlie Brown would say, "Good Grief!".

Righteo - roll out the pros and cons...

Pros:
1. I will probably have it anyway, as I am apparently a 'slight man'...hmmmm.  I guess I have to take the good with the bad.  I have been called 'young and fit' so many times in the last two weeks, I have to take the not so complimentary, and probably more accurate, observations as well.
2. I am better off having the procedure, which is under GA, whilst I am not on a course of ChemoT and RadioT.
3. It will avoid the more conspicuous naso-gastric tube, which would be used to get me through until I can have a PEG inserted if required later.
4. I can keep ahead of the nutrition curve and also keep up my hydration - which gets a bit awkward when your throat has been fried (about 4 weeks in).
Cons:
1. I might avoid the risks associated with the procedure.
2. It might become dependent on it and avoid using, and thus maintaining my swallowing and food processing muscles (this is highly unlikely when you live with one of the best speech pathologists in the Southern Hemisphere...if not the world!)

So the 'pros' have it.  What do the experts think?  All those who think I should do the PEG insertion say 'aye', those not in favour say 'neigh'.

Luckily my RadOnc - that's what the cool kids call a Radiation Oncologist - Dr P, had already done the survey for me, when we met him four days later (Tuesday 24 April).  The results.. Dr Ooi (ENT Surgeon) - neigh; Dr P (my RadOnc) - neigh; Tracey (ENT NP) - aye, Dr C (another RadOnc who had been dragged into it) - aye, Dr S (Oncologist) - slid down into his seat and did not respond.  Oh great 2-2 from the medical team.

Further research and conversations with the cancer team speech pathologist and dietitian and with an anaesthetist led us to go with the pre-emptive PEG.  Turns out they had sort of assumed that anyway and before we had a chance to let them know, I was advised of the procedure date.
Hmmmm...OK.
 To their credit, it was explained that they had seen a window and were quite happy for me to pull out at the last minute.

Some VERY Random Images of the Journey

TumourWatch5 - A Timeline

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

TumourWatch4 - A Timeline

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

TumourWatch3 - A Timeline

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

HPV HPV HPVeeeeee!

NOTE: If you have a son or daughter high school age or older - check that they have had Gardasil 9 - the HPV vaccine.  Once they get HPV (it is a very common STD), it is too late!  They will be sitting on this cancer causing virus for the rest of their life.  Girls have been getting immunised at 12-13 since 2007 but boys have only been getting immunised since about 2013, so there are many 19+ year old boys who are not immunised.
----------------------------------------------

HPV is responsible for:

• almost all cases of genital warts and cervical cancer
• 90% of anal cancers
• 65% of vaginal cancers
• 50% of vulvar cancers
• 35% of penile cancers
• 60% of oropharyngeal cancers (cancers of the back of the throat, including the base of the tongue and tonsils).

excerpt from from: https://www.cancer.org.au/about-cancer/types-of-cancer/hpv.html

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Day six of tonsillectomy recovery - not the most enjoyable exercise, but the pharmaceuticals are getting me through. I've got my paracetemol-ibuprofin concentration maximums nicely out of phase, so they tag in and out at just the right times.  Add some codeine and Endone to the background and we get the Phil Spectre 'Wall of Analgesic'.

My main mission for the last few days has been to get through it.  I don't normally advocate living this way, but in this case - I'm counting down the days!  There has been a fair bit of sleep.
Yesterday however, the throat started feeling a bit less sharp, so I had a day off the Endone.  This kept me up and about and I pottered around getting a few things done - gingerly.

Late in the afternoon, I got a call from Dr Ooi's rooms.  The results from my tonsil biopsy had comeback.  We are seeing him tomorrow, so we didn't get the full wrap, but we did get some bloody great news.  Human Papilloma Virus (HPV) is the cause of my cancer.  This had been suspected, but to hear it confirmed was such a relief.  As possibly stated previously, HPV related throat cancers are more likely to respond positively to treatment.  There was a huge collective sigh of relief exhaled from our household.

Further news we are waiting on is whether they can confirm that all of the throat tumour was removed.  He hope to find this out tomorrow when we meet with Dr Ooi.

After a few days of soup, custard and ice cream, some party pooper nurse practitioner associated with the oncology team, told Alison that I should be eating abrasive foods to slough / scrape the excess scab tissue.  A harsh application of counter-intuition backed by sound logic, but resulting in an uncomfortable change in diet.  She did bring a mildly effective numbing gel for me to use, so I can't complain.  I have eaten vegemite on crusty toast, a pie, meat and three veg and, after about seven years, a Kitchener bun - I might do the whole naturopath diet I reckon, but not just yet - my main focus is putting on kilos (I reckon I've lost a kilo at 74.5kg).

Tomorrow is my birthday - I am meeting Dr Ooi in the morning and then attending the Head and Neck clinic in the afternoon.  Hopefully for my birthday, I will get a mud map of my long and winding road ahead.

Well That Shut Me Up!

The first 36 hours after the tonsillectomy, I was still annoyingly upbeat.

I can still recall myself saying "I've had sore throats much worse than this".

Then it hit! I'm not sure if it's part of the healing process or if the general anaesthetic had still been giving me some relief, but holy shit - the pain kicked in.

I'd been getting by on a mix of Panadol and Panadol Forte.  I didn't need the Endone.

Forget that.  Saturday morning I loaded up on the Endone.  I slept most of the day, but was suffering big time at the end of my medication cycle.

Anyone who's talked to me since this diagnosis is probably aware that I needed to be brought down a notch or two.  Well I'm still positive - with good reason, but yes this recovery period has managed to shut me up for a while!

One Tumour Down!

So good news about the surgery - Dr Ooi removed the tonsil/tumour - what a legend.

The surgery all went pretty well from my end - of course being unconscious for all of it, I'm not the most reliable source.  But my experience of it was good.

Alison and I entered the 3.5 star motel foyer that is the reception area of Flinders Private Hospital.  We paid up for my day stay and didn't wait long before being ushered upstairs to the next level waiting room.  I had had a fair feed at about 10pm so the fasting wasn't causing me much grief.  After about an hour there, we were taken to my private room.

We had a great view down onto the shared vehicle and pedestrian entrance area.  Whoa! Talk about chaos.

I went through all the usual checks, reciting my name, rank and serial number numerous times, before finally saying goodbye to Alison and leaving my room for the theatre.  I wasn't feeling too nervous, I just wanted Dr Ooi to get this thing out of my throat.  I was wheeled into the green room of the operating theatre.  It was a small room, I was wrapped up in a pre-warmed blanked and there was a little stereo cranking out all the hits from the 80 and 90's.  I lay there undisturbed for about four songs, some Elton John, Fleetwood Mac, Michael Jackson and Alanis Morrisette.  Then Dr Ooi came to have a chat.  It was really good to talk to him.  He assured me that he was still keen to remove the tonsil if possible.  We had a bit of a chat about the issues with HPV, in particular the cohort of boys who have gone through without vaccination.  He wished me well and turned my tunes back up before leaving alone once more in my little change room.

A Beatles song came on (I can't recall which one), and I thought 'perfect, let me go in to surgery with this as entrance song'.  But that ended before I was driven in...no worries though, I was taken into theatre with Sting, Andy and Stewy cheering me on.  A good omen!

I had a bit of banter with the theatre staff, starting a pretty robust conversation about 'Bachelor in Paradise' - Dr Ooi was having no input...hmm?

I said goodbye to all and the anaesthetist dialled up the happy juice.

-------------

I was getting a bit sick of waiting go into the theatre.  People were coming and going asking me questions and fussing around me.  I'm as ready as I'm ever going to be, let's get this thing going.  The haziness and incomprehensible talk subsided, and a nurse asked me if my throat hurt.  Yes.  Yes it did as a matter of fact.
'Have I had the surgery?'
'Yes, you're in recovery'
The penny dropped.
I felt warm and loving.  The world was good, except for the picture on the window opposite me.  It was a significant way off of horizontal, a detail exacerbated by the venetian blinds backing the picture and screaming attention to the anomaly.

At first I tried to wave down a nurse or PSA to advise them of the problem. Then common sense kicked in and I decided it wasn't that urgent and could wait for the next nurse that attended me.  No nurse came.  My next visitor was Associate Professor Eng Ooi.  After explaining the details of the surgery, it was my turn, so I let him know about the picture being askew.  It didn't seem to be much of an issue to him.  Hmmm.

I got taken back to my room to find Alison and our friend Michelle.  I was pain free, warm all over and loving life.  It was a really nice couple of hours amidst a pretty rough couple of weeks.

TumourWatch2

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

On The Eve of Destruction (of my tumours!)

Well not really, but it feels like it all starts tomorrow.

In reality tomorrow's procedure is really just an information gathering exercise, a tonsil biopsy, so I am still not really starting the treatment campaign.

I have been advised that there is some chance that the tonsil with the tumour may be removed.  This would only occur if there is enough isolation and non-cancerous tissue to repair the site.  This would be a big win.  If it is not removed tomorrow, it will be treated by RT.

The results of the biopsy will then inform the fine details of the treatment plan.

So even though I haven't technically started my treatment - going under a GA in a hospital, sure feels like a start.  

The procedure will take place at Flinders Private.

It is a Day Surgery, with possible overnight stay.

I report there at 8:30am.

I will look forward to finding a tonsil in a jar on my bedside cabinet, but will report the result either way.

In the meantime enjoy some passionate protest singing, champagne choreography,  frank and beans and some very unsatisfying harmonica playing that never quite delivers on what it promises..

TumourWatch

Today I was about to head out to BHC, when I received a call from Adelaide Dental Hospital to see if I could come in at 11:30am after a cancellation.

Of course I said yes.  

The dentist advised that he was assessing my teeth to see if he would need to do any extractions prior to RT.  The dentist was really caring and I actually got a bit wobbly as he explained the process from here.

The look around went well - a big sigh of relief - and the X-Rays supported the visual inspection.  The dentist was very impressed with my dental status.

Later that day I heard from my specialist's rooms.  The PET/CT scans from Friday indicated that there were no other tumours - whooo hoooo!

Yoga tonight to keep the body and mind in tip top shape - thanks Lyn!

Now about to eat a big bowl of pasta - apparently I need to put on some weight.

A good day!

Rolling Hand Grenades Through Doorways

Alison and I made our way back through the Repat Labyrinth and locked in our plans to tell my parents.  We had organised to meet them after lunch at their house - we hadn't said that we had a special reason.

We arrived to find only my mum home.  Hmmm.

"Howdy Mum, where's Dad?"
"He's just gone to pick up JB and M"
"Oh cool"

NOT COOL!

Mum and Dad help out my sister and bro-in-law by collecting and hanging onto their beautiful kids after school some nights.  So we were about to be invaded by these little bundles of smiles and energy.  Unloading this news on my parents and expecting them to keep their shit together enough to look after the kids and not make them worried, was too much to ask.

Mum was making cups of tea, whilst Alison and I tried to communicate a plan B without seeming suspicious.  Sending each other texts across the table etc.

Then Mum told us that one of my other sisters, Jodie, was heading over to collect her dog George.

When Jodie arrived she chatted for a few minutes before Alison executed her unilateral plan.

"Any Jo, we have something to tell Maxine and Gerald, do you mind taking JB and M for a walk to the beach"

Jodie got a whiff of the situation and before we knew it we had an audience with my parents and a bit of time for them to get themselves sorted before the kids came back.

They took the news very well.  Asked lots of questions, shared positive cancer stories about friends and relatives and we sipped our teas.

It didn't stay that way.

Jodie came back and the kids were ushered into a the TV room.  We told Jodie.

As we drove away I lost it.  I had been really good at controlling my thoughts, but I couldn't help thinking about hearing that from one of my kids, and how I had just left that with them and driven away.

I could not get an image out of my head, an image of rolling a hand grenade into their doorway and walking away.  A few more victims on this cancer's list.

----------

Next step was to tell our own children.  We had done a fair bit of planning, particularly Alison, and we executed our plan well - we had a lot of reason to feel positive and we laid this out for the kids.

Then I headed off and  rolled a few more grenades that night as I told the rest of my immediate family.

It turned out that nearly the whole Spurr gang ended up back at our house, apart from one niece studying in Sydney and a couple of nieces who were otherwise engaged and and my brother in law who was with his young kids.  It was so nice to have my parents, all my Spurr brothers and sisters and nieces and nephews in the same place.  Noisy, banter, laughing, pizza and a few tears.  It felt like it was what everyone needed.  It was so nice to see Ned out with his adult male cousins having some sort of ball game related therapy.  He mentioned the next day how special that was to him.

We all had something else in common now - we were al victims of cancer.

It's not Lymphoma

Our research over easter had us pretty confident that I had lymphoma.  This was something we could sink our teeth into.  We came to terms with the news we were likely to hear at Tuesday's GP appointment.  We had also assumed that pathologists would have been working for at least one of the days of easter, just to get the really really important people's biopsies tested.

We were wrong.

The GP did not have the final results, but she had rung and received enough information to hit us for six again.  The tumours in my neck were did not contain lymph tissue, they contained squamous cells (surface cells found in skin or lining tissue such as the throat).  This indicated that these tumours are secondary tumours.  So where was the primary tumour?

Where the frig'n frig was the primary tumour?

The fact that they were squamous cells and had metastasised (moved) into my neck, led the pathologist and GP to believe that it would be found in my head or neck region.  My GP, made a few calls and got me a spot that afternoon - legend*.  I was sent for a CT scan of head, and X-Ray of neck.  So it was back to Repat Radiology - this time I had Alison with me - so I got through the maze a bit quicker.

Things were a bit dark now.  We'd got through easter, got our heads around our google diagnosis and now this.  Searching for another cancer.  Maybe it would not be found.  A lot of other maybes were going through both our heads as I dribbled on to Alison about the fascinating architecture and range of building materials used over the 80 odd years of what seemed to be ad-hoc development of this 'hospital'.

The waiting room was all pretty high level - I was probably at the lower end of things.  We had actually got there early and been for a fascinating walk, as described above.  I really recommend it.  So we didn't spend too long in the waiting room.  I was called in, but Alison was not allowed to follow.

I went into a foyer area with four recliners.  I was met by a very caring nurse, who was dissolving my gumption with every kind gesture.  She put a line in my left arm ready for the iodised contrast solution that would be needed for the CT scan.  I was advised that it would make me feel warm all over and that I would feel like I was going to pee myself - hmm.

The CT scan was followed up immediately by the neck X-Ray.  Both painless and simple processes.  The most painful part of my treatment was about to hit me - removing the hypafix (band-aid)securing the IV line.  I toughed it out, had a little cup of tea and was on my way. 

I didn't pee myself by the way.

Happy Easter! 

...It's the Wednesday before Easter.

So I met Alison at home and we got our heads around this as much as we could.

We went to see the GP, who advised me of the concerns confirmed by the ultrasound report and blood test results.  She booked me in for an...ultrasound guided fine needle aspiration (FNA) biopsy at the Bensons Radiology I had driven past in the bus that morning.  This was to take place the next day - Thursday.

We decided not to tell the kids until we knew some more information - a pretty simple decision.  To aid our cover up - I still had my stitches and a slight knee issue, to use as a cover for the day off.

There's sort of a class system in the radiologist waiting room.  This had only become apparent to me once I'd reached a certain level.  I'd only ever been in for sport or general injury events.  The lowest level of punter in the waiting room.  Now that I had reached the next level, I sort of resented the place.  I couldn't help feel the presence and energy from those in a much more serious place than me.  I was of course so grateful that I was here so soon after the GP appointment and that this place had the ability to give me some cherished clarity.

The procedure was fascinating.  The doctor inserted a needle into my neck tumour, guided by the  radiographer and his UltraSound technology.  Once he was happy he was inside the tumour, he jiggled it around for 4-5 seconds and pulled it out.  This was repeated a total of three times. I was fascinated by the simplicity of the cell collection process - a jiggle!

The procedure caused a fair bit of anxiety, but was not as painful a I had expected.  I was feeling for Alison, sitting in the corner, watching this procedure - which looked very painful - repeated three times.  I can honestly say that that procedure would have been harder for Alison than for me.  It really drove home a notion that had been brewing for a while.  This illness draws in a number of victims - I may be at the centre of it, but the people close to me, were going to be victims of this as well.  We were all going to need to support each other - it is a cliche, but valid just the same.

Unfortunately we were not going to get any answers for another four days.  It was Easter, and although we did not know it, there was no pathologists working on my biopsy over the break. This was a tough period.  We were quite sure it was cancer, but very little information about what type or where from here.  I was at work most of the weekend, but Alison had all that time to try and keep her head together - Happy Easter!

A Surreal Bus Trip

After my Repat experience I felt a darkness edge it's way into my thoughts, but I closed the door on it and was able to sleep well Tuesday night.  On Wednesday it was off to work as normal.  Heading back to work erased any hint of the gloom I had felt in the Daw Park labyrinth.

The students were enjoying 'Aquatics Week', meaning the Year 6 students would stay back with myself and a colleague (H) in the morning, whilst the Year 7 students would make the trip to the aquatics program at Port Noarlunga.  H and I would then take the Year 6 students to the beach later in the day.

At around 10am, I had a call coming in from my doctor.  Obviously I wouldn't normally take a call whilst I was teaching, but I was suddenly reminded of the potential significance of this phone call, and as I was 'team-teaching' I stepped out of the class for a moment and took the call.

Doctor: "......so can you come in this afternoon"
Me: "Ummm..no, sorry, I won't be able to get away from here today"
Doctor: "No, you need to come in this afternoon"

***BANG***<<PAUSE>>

Me: "OK...so are we talking about cancer?"
Doctor: "Yeah, let's talk about it this afternoon"

I made my way back into the classroom with quite a backlog of eager students wanting work proof-read or questions clarified.  I fired a small, but well understood, non-verbal gesture across the open double classroom to H, letting her know that I really appreciated her taking the whole group for the last 90 seconds and that I was fine, and that if I wasn't actually fine, I was at least fine to keep on as long as I had to.  She shot back an immediate reply over the top of a group of students vying for her attention.  She told me she knew I wouldn't just leave the classroom for a minute and a half to take a phone call unless it was something serious, so there was no thanks necessary, but she knew that I was not OK so we will talk later.

I told my first person, sort of.  I mumbled and gestured something about a lump in my neck.  I said enough to my deputy principal, and friend R, for him to get my afternoon release sorted.  I called back the doctor to confirm I would be there for the 1:30pm appointment, which she had kindly chiselled out her her full day schedule.

I raced back down to the coalface to assist H and the parent helpers to get the Year 6s ready for dispatch.  There had been a brief moment of questioning from H, but we were in the midst of the masses, so I kicked that can down the road.  I did try and call Alison, but as expected on a Wednesday, no answer. At 10:25am I followed up with a text message.

CANCER: What Do You Think of That and How Will it Change Your Life? - It was like a really good book - with really crappy subject matter - that you wanted to settle down in a quiet spot before you opened cover.  The book was brimming with thought provoking and unsettling ideas.  But I was not in a quiet spot.  I was sitting in the 14th row of a bus full of excited Year 6s, who I was responsible for as we headed to the beach. I decided to put that book back in my bag and covered it with a jumper.

H was at the front of the bus, non-verbal gestures were no use to us.  We exchanged texts.  My second person, a colleague, but also a good friend.  It was strange to watch the back of her head from 13 bus seats away as I knew she was reading the text. I recall going past Bensons Radiology on Dyson Rd and thinking I might be getting to know that place.  This was the foot in the door that a few more opportunistic thoughts used to get some airtime.  I got a bit dark from about Christies Beach Rd to just before the Port Noarlunga roundabout.

In that three minutes of darkness, I felt calm and powerful. I am writing this part of my journey retrospectively, and I have not had to face a terminal diagnosis, this was just a venture into the unknown for a few minutes.  I certainly can not claim to know how that must feel.

As we got off the bus I got ready to go surfing with the students - this is a DECD facility and duty of care is handled by the instructors.  I had brought a rubber glove and some tape to keep my fresh finger stitches dry.  Mucking around in the waves - which is what I call surfing - sounded like a great idea.  H however had a better, well not better, but more practical idea.  I could catch the Year 7 bus back to school and my colleague M could stay at the beach. A solid idea, as I was always going to be pushing it getting back from Pt Noarlunga in time for my 1:30pm appointment, and this also meant I could reverse my decision to decline the coffee she offered me earlier.  I did the trade with M, also a good friend, the third person I told.

By the time I got back, Alison had returned my text, and was leaving work to come to the appointment with me.

Re-Open The Repat!

On Tuesday 27th March, I attended Repat Radiology for an ultrasound of the suspicious lump.  As the name suggests, Repat Radiology is based at the site of the the Repatriation Hospital, Daw Park.  The hospital was closed down recently in a state government led, health system overhaul.  The decision caused a public outcry and the site had been a focus of the recently elected Liberal government's election campaign, them promising to re-open the much-loved hospital.  Repat Radiology is a last bastion of patient services hanging on in the otherwise deserted hospital.  Being located right in the heart of the complex, visitors are required to follow a series of signs through a maze of old run-down walkways, unkept gardens and empty hospital wards.  Getting to that end of that maze, I really felt an overwhelming sense of the gravity of this appointment.  I found a quiet place to sit, not a challenging task, and took in this new notion that had overcome me - 'maybe it is a tumour'.

The story so far.....(screen goes wavy)

I was shaving about three weeks ago when I felt quite a large, painless lump in my neck - right side.
I was feeling a bit tired and there was some illness in the family, so I let it go for a week or so.

Then, whilst opening a bag of chook pellets with a retractable blade, I lacerated my finger, damaging a tendon.  I was put in a back-slab, making it a bit difficult to work the next day.  I took this bonus day off to get myself a doctor's appointment.  The doctor was a bit concerned and sent me along for bloods and an ultrasound.  I'm not sure if it sub-conscious mental preservation, but I was still not even contemplating cancer as an option - 'It's NOT a Toomah!'