Is it Possible to be Pleasantly Surprised After a Meeting Like This?

Unbelievably yes, but I’m not talking about the content, only that I seemed to understand and remember what was said.  Thanks to Christine for coming along – she was indeed a help during this meeting.

I went in armed with a series of questions and happily, I came out with answers to them all.

Here we go – in no particular order:

When are we going to get things started?
As soon as possible.  It depends on whether or not there are any dental issues.

What do we need to do first?
See if there are any dental issues.  Because the radiotherapy is going to nuke my jaw, if in later years teeth need to be removed, there could well be some healing issues/complications.  So, they get rid of any doubtful teeth first.  Jumping around a bit, after the meeting with the gang, I’m taken down to dental where they take a cool 360^o x-ray of my teeth.  As result, find out I have an impacted lower wisdom tooth that definitely needs to come out and they decide might as well take all four.  The bad news is they’re talking about doing it under local as opposed to general anaesthetic and doing it next Monday.  Apart from that, they’re happy with the way Ashwin has been looking after my teeth.

What is issue re teeth?
Answered above

Will radiotherapy and chemotherapy be done concurrently or consecutively?
Radiotherapy is going to be daily for 7 weeks.  Chemotherapy will be weekly during the same time.

When will the Gastro Peg go in and what is it for?
During the radiotherapy, my throat is going to become really raw and there is a strong possibility I won’t be able to swallow.  If I can’t swallow, I can’t eat – Houston, we have a problem.  There are two alternatives.  One is a tube down my nostril into my stomach for feeding.  Given what will be going on with my throat, this might be unpleasant to achieve, if at all, as it also requires a scope down my throat to ensure the tube is in the right place.  Second option is the peg which will be inserted before we get too far into treatments (maybe even before we start).  Advantage is it is more discreet and because of size can deliver nutrients more easily.  Requires an overnight stay as they need to obviously cut me open to insert the peg into stomach.  Yippee

Mr. Morrissey mentioned I might not be able to swallow – how long for and will I be hospitalized during this?
To some degree this is answered above, but will give a little more clarification.  The radiotherapy is effectively going to nuke my throat.  As well as targeting the overactive (cancerous) cells, normal healthy cells that replenish themselves will also become collateral damage.  One set of such cells is my saliva glands and they will almost certainly never recover.  As a result, I’ll basically end up forever walking around with a sipper bottle of water.  At least I’ll still be walking around.  Next thing to go will be my taste buds.  Mr Hamilton recommends if I have a particularly nice bottle of malt or favourite wine – drink them now as it will be months before I can taste them again.  My taste buds will recover – to an uncertain degree – over time.  What’s this got to do with swallowing?  Well, as the radiotherapy runs its course, my throat will become very raw and different people react in different ways.  I might be one of those people who still manage to swallow, I might not be.  The peg will go in as a precaution for the worst case scenario.  As previously mentioned, it is a lot safer to do that before we start the fight back.

With regards to the hospitalisation part of this, seems there will be a day here and there as they manage it to settle things down.  I’m still presuming that if the peg comes into play, they’re going to want to administer/monitor the nutrition.  Can’t see them letting me drive to work with a drip bag hanging from the rear view mirror.  Could make an interesting you tube clip though.

What will be done where?
Treatment will all be done at Wellington Hospital.  Dental will be Hutt.

At what stage am I going to feel like Shite? / When will I be “incapacitated” vs treatment happening alongside my normal life?
I’ve combined these questions, because the same answers really apply.   It is most likely around the 4^th week of radiotherapy that things will really start to take their toll.  It will last probably up to two weeks after treatment finishes.  How bad it is going to be nobody can say right now as everybody responds differently and has different pain thresholds (this will be a good test of mine!).  I might be lucky in that it is just some discomfort related to the rawness of my throat, it might be more intense.  Guess we’ll need to watch this space to see which.

With regards the reaction to the chemo, seems we’ll know how I’m going to accept that after the first session.  From what I could gather, seems the chemo is a constant, whereas the radiotherapy is the one that will build up over time.

Some other interesting radiotherapy “factlets” while I’m here.  One side effect – not sure if positive or negative, depends on your point of view – is I’ll be unable to grow hair (beard) under my neck once this is over.  Might be able to achieve a goatee, but that would be it.  Upside – less shaving required.  Also, my skin around the throat and neck will progressively take on appearance as though I have been scolded.  That will recover I believe.

Under what circumstances will you need to consider operating? / How do we know we’re winning the battle?
Again, it’s easiest to combine these questions as the answers are linked.  After the treatment (7 weeks) they wait 6-8 weeks for things to settle down.  Tests will then tell us we have knocked the bugger off and we don’t need to operate.  If we do have some resilient little buggers left, then the operation becomes the means to kick them into touch.

Previously, I’ve talked about the magic 5 year period as measurement of success.  Seems that with tonsil cancer that period is actually closer to 2 years.  So I’ll be a victor/winner sooner than I thought I would be.

Some bring it all down to earth comments now.  This cancer is beatable.  It responds well to treatment and in fact Mr Hamilton had follow-up appointments with two other sufferers, with almost identical profiles to me, only this week and they have both won.  The unknown at the moment is whether or not the lymph system has decided to distribute some of these nasties through the rest of my system and they are hiding waiting to spring an unwelcome surprise at a later date.  Realistically, we don’t know that answer, but as the chemo is a full body hit, I’m confident any stragglers are about to meet their waterloo along with the main tumours.

So there we go.  By some weird coincidence, my raft of questions actually fitted in well with the information obtained today.  But wait, there’s more.  Mr Hamilton has only touched on parts of the process, etc.  There is a whole raft of information still to be passed on and that will occur over the coming weeks.  Sensible attitude of let’s do this in baby steps.  Among other things, I’m still to be told the potential side effects, etc of the chemo, and where the face mask will come into all of this.  We haven’t touched on where the dieticians fit either, but it seems the speech therapist will be showing me exercises to maintain my swallow reflex.

Tomorrow morning I’m going to have a reasonably substantial set of bloods taken( lab was closed after the dental x-ray was completed) and then am going to see if I can get my health insurance to pre-approve the teeth being taken out under a general anesthetic.  Wish me luck.