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.

Information Overload

Follow-up meeting with Mr Morrissey can only be described as information overload.  I’ve updated the “support team” with what transpired, so now time to update the blog.

Started with a look at my CT scans – rather cool – and confirmation the cancer is indeed restricted to tonsils/mouth.  Chest was clear.  One for my corner.

From there on, it was somewhat of a whirlwind information overload scenario.  On way out, was recording some voice memos on my phone so I didn’t forget stuff and when I got home, I just dumped everything down in a list.

Now, a little while later, am trying to sort it into some sort of logical order, so here goes.

Tonsil cancer is rated on scale of T1 (smallest) - T4 (biggest), based on size of tumour.  Mine falls into T2 .  The Lymph node scale is N1(smallest) - N3 (biggest) - I'm N2.

Mr Morrissey didn't take the tonsil out because it isn't normal tonsil tissue now and he said it would have meant he spent at least two hours fighting major haemorrhaging on a Friday afternoon.  Fair call.  I said today was the first day I felt UI could swallow normally and he said it normally takes 10 days, so I was right on target.  He took a look at his handiwork and was happy with recovery progress.

The meeting on Wednesday will be with: Mr Hamilton (oncologist), 2 x plastic surgeons, dentist, speech therapist and a dietician.  Mr Morrissey is also hoping he’ll be out of his clinic in time to attend.  Bloody hell, what is going to happen to me?  While I expected information on treatment plans, etc, was totally unprepared for such a diverse number of people to be attending.  Mr M suggest I bring someone along with me as this will be rather a daunting meeting.  Really?  Me vs 7?  Told him I’d talked to Christine about coming and he thought that was a good idea as she has lived the process.

Moving on, initial plan is not to operate to remove blemish, tonsil or lymph node.  The radiotherapy is designed to attack/kill the overactive cells (the cancerous ones), so providing that all works, no need to operate.  Should they decide to operate – sitting comfortably are we? – will involve a ½ face reconstruction.  You What?  Didn’t ask any more as that sounded like something for a later date.  No point stressing about something that isn’t going to happen.

The chemo is apparently more of a targeted approach and is designed to be more of a general attack to get any rogue cells as I see it.  Interestingly, seems it adds about 10% to success/survival rate.  Not sure if the radio & chemo are going to be done consecutively or concurrently (time to get a notebook to start writing down my questions for Wednesday).

At this time, I’ll slightly change course.  Seems a PMA is critical (Positive Mental Attitude) as those that have one seem to respond better and are more likely to win out.  Told Mr M I preferred “victor” over “survivor” and he said that was a fine example of PMA.  That said he wanted to make it quite clear that I shouldn’t underestimate how bad this is going to get.  While everybody responds differently to treatment, we’re talking some pretty intense stuff here.

I’ll be fitted with a gastro stent, or something like that, as there will be times I won’t be able to swallow anything.  Seems this will be inserted pretty early in the piece.  This tends to imply a period of hospitalisation.

Treatment will probably start in three weeks or so.  They need to build a special mask of & for my face to ensure my head is always in the same position for the radiotherapy.  (Talked to Christine about this and she says each session is approx 30 minutes from go to whoa).

Also, any suspect teeth have to come out.  Another question.

Mr Morrissey suggest I give Tatiana a bottle of wine because she found this when I didn’t even present with any symptoms and I got the impression that had we be having this discussion as little as three months later, things might be different.  To top it all off, seems it is pure bad luck I’ve got tonsil cancer.

Last couple of points.  Seems survival rate after 5 years is 75-80%, so once I hit that milestone I’m pretty well deemed a victor.

Saving best for last.  Treatment could be anywhere from 7 weeks to 4 months and until Wednesday I’m not going to know how much of that will be incapacitation as opposed to treatment alongside my normal days.

Looks like I’m about to get some serious repayment of my tax dollars.

I won’t lie and say I’m looking forward to all of this, but by the same token the old “no gain without pain” adage comes to mind.  If this is what it takes to beat this thing, then bring it on.

I’m wondering what else could possibly be thrown at me on Wednesday, but not long to wait to find out.

Sunday 8th

Had a good discussion with the clan after dinner last night (delicious roast lamb in case you’re at all interested) and think we’re all on the same page.  Might seem a little thing to some, but it has lifted what I perceived as some pressure off me.  Think I’ve got a great support team around me and am lucky in that regard.

While on the subject of discussions, had a good one on Friday night with my sister-in-law Christine and it was really good to talk about how chemo affected her and hear things from a “survivor’s” perspective.  (Doesn't "survivor" sound terrible?  Think "victor" sounds better)  Think I will take her up on her offer to talk some more once I know what they’re going to do to me.

Also seems that Mr Hamilton, the oncologist is very highly regarded, so seems I’ve got the A-Team in my medical corner.

Figure there is a high probability that the blemish on my palate and the remaining bits of the left tonsil are going to have to be dealt with before any chemo and/or radiotherapy starts, so I’m prepared for that.  Of course, this is all subject to what Mr Morrissey has to say at 2:30 tomorrow afternoon.

Wednesday to Friday

Things have settled back into a routine now.

With each passing day, the effects of the Tramadol are wearing off.  Nice to have those bodily functions back to normal believe me.  Rash still a tad annoying, but less so each day.

Got a call from Mr Morrissey on Wednesday morning to confirm diagnosis.  Told him I’d figured that out as the oncology appointment card had arrived – he apologised as he’d hoped to get to me first.

Had a lunch with the team on Thursday and they surprised me with a belated birthday present that,  as things have now turned out, will also end up being great for any hospital stays as well – an iPhone docking station/stereo.  It will not only charge my iPhone, but I’ll also be able to plug my headphones in so don’t disturb others.  I’m truly humbled by this gesture.

Still having some issues with eating/swallowing, but voice is getting stronger each day and think anaesthetic has almost done its dash.

Friday night now, week is over and as far as I’m concerned everyone that needs to know now does.  Hurricanes have beaten the Reds (another scary start, but saved at the end) and got dinner at Ruth’s tomorrow night to look forward to.

Have unpacked the IPhone station and it has pretty impressive sound.  God help the other patients if I forget to plug the headphones in.

Have made decision that will tell Ruth, Chris & Pat about my Wednesday appointment at dinner.  Not fair on me to be holding it back and at least we’ll all be there to support each other.

Tuesday

Have a meeting booked for after lunch to tell the team.  Again see full honesty as best approach.

Back from the meeting with the team and again the news was followed by a period of silence.  Getting used to that now.  Had meeting later in the day with some of the managers, same reaction.  Will tell rest tomorrow so they’re aware before any news spreads.

Got home tonight and the appointment card for my follow-up with Mr Morrissey was in the mail.  Along with a second one for an Oncology appointment on Wednesday afternoon.  Guess the 20% uncertainty is now removed.  Despite having known in back of my mind this would be outcome, still knocked me back a bit.

Texted Faye and we’ve agreed not to tell the others just yet – not sure they’re quite ready for it.

Moira is coming for tea tonight, so that will be another teary session.  She has arrived and I’ve just handed the appointment card to her.  Hugs all round.

Have decided to stop taking the Tramadol – googled the side effects and they match what I’m experiencing, so those pills are off my list going forward.

Monday

A strange start to the day.  Dropped the Vette off to get the alarm fitted, so have had time to clear my head while walking to work.

Still haven’t decided how I’m going to do this.  Oh well, see how it pans out.

Have an email from my MD asking how it went, so will now put my resolve to the test.  Give him a phone call and he asks how things go.  Tell him not that well and about the diagnosis.  Silence, then “tell us what we need to do to help you”.  I feel very lucky to have this sort of support from my employer.  It is also interesting to note that despite feeling like I had accepted all of this, actually having to tell people again is rather unsettling.  I can feel some tears starting to well up, but remain in control.  Didn’t think it was actually going to be this hard and there are lots more people to tell yet.

During the day I face up to more colleagues and they all greet the news with shock, but unfaltering support for me.

Tomorrow will tell my team before telling my fellow management team members.

Sunday Rolls Around

Routine settling down now.

Have decided that given I’m likely to be laid low at some stage of the treatment, going to buy a decent TV for the bedroom, so will go shopping later in the day.

Pat is making a bacon and egg pie for me, so that should go down reasonably easy – dinner is sorted.

Have this annoying itch, sort of like hives and certain body functions aren’t working normally.  Hmmm, will have to keep an eye on that.

Been and got the TV and decided better prepare for work tomorrow.  This week will be taking the Vette to work, so better make sure it starts – it doesn’t, battery gone flat.  Bugger.

Just after I’ve done the car shuffle and jump started the Vette, Pat & Chris arrive with the pie and we decide to venture out for a drink at the pub.  Good way to charge up the car battery as well.  Managed a pint, albeit rather slowly.

Back home and Ruth has called round.  She has decided she wants to come to specialist with me.  I’ve told her she isn’t.  It’s important I ask the questions I want and can listen to the specialist without any distractions.  A case of this is about me not anyone else as I see it.  Selfish maybe, but important for me.

Challenge tomorrow will be telling work.  I’ve sent them all an email saying as a result of my op, I’m not going to do much in way of talking for next couple of days.  They’ll probably enjoy the peace and quiet.

The Day After

Been and had my hair cut this morning.  Ruth took me there and back as I’m not allowed to drive for 24 hours after the op.  She’s now gone home and I’m just chilling out.

Had a reasonably good night’s sleep, but find trying to swallow first thing requires a lot of effort.  Bit of a problem when you’re trying to take some painkillers, but eventually get them down and they start to kick in.

Moira came around this afternoon and it was hard to see her reaction “in the flesh”.  It is a strange thing, but I know she genuinely cares, yet I seem more worried about her feelings than my situation.  Damn it, still putting others before myself.  I’d promised myself that I was going to put myself first and am already breaking my word.

Eating is still somewhat of a mission – ice cream certainly helps to soothe the throat, so good thing I stocked up earlier in the week.

Trying not to rely on painkillers too much.  Taking panadol a couple of times during the day and tramadol at night to ensure a good sleep.  Difflam spray is helping, but still hard to hit the spot as everything is so inflamed I can’t see a damn thing.

Jason has come around for a visit and I’ve told him news.  He is now sitting quietly on the couch.  Have had some dinner but still struggling with the swallowing thing.  We’re watching the Hurricanes play the Chiefs and that isn’t exactly lifting the mood.

Well, bugger me, the Canes won.  Jase has gone home and I’m having another early night.  Hope this drowsiness doesn’t last too much longer.

Breaking The News

It is quite interesting how we break news in different situations.  When we have happy news, we can’t wait to share it and think of unique ways to perhaps tease those we’re telling.  Telling loved ones that you have cancer is not something I’d wish on anyone.

My Mum died from secondary liver cancer – they didn’t look for the primary cause, there was no point.  I’ve seen friends have to deal with losing loved ones to cancer and some at such young ages that you start to question why the disease is so indiscriminate.  My sister-in-law has fought and recovered from breast cancer.  Now I’m facing the reality and having to drop the bombshell myself.

Strangely, I find myself more worried about how this will affect them than how it affects me.

I’ve texted my eldest sister Faye in Australia and told her and she is as supportive as ever, so now for the ones I have to tell face to face.

The ride home from the hospital is a quite one.  Not really wanting to hurt my throat and thinking about how I break the news.

We’re home now and just waiting for Ruth to arrive.  Ruth and Chris are now sitting on the couch, so time to tell them.  No point mincing words, so I just tell them what specialist said and how I see it all as a challenge and not going to be beaten by this.  There is what can only be described as stunned silence.  I think while, like me, they had an idea it was coming, when that glimmer of hope is snuffed out, you have to face a reality you don’t really want to.

Anyway, we’re talking about it and deep down I think we’re all still clinging to the faint hope the 20% uncertainty might yet come through.  From my perspective, I feel a great weight has been lifted and am now working on my recovery.

Have tried to drink a beer and after a mouthful decide it isn’t what my throat is looking for.  Strawberry milk instead – again, not what I envisaged for today.

Ruth has now gone out to get the drug prescription filled – I have a choice of 3 painkillers, so should be some fun to be had here.  While she is out, I’ve rung Moira and let her know.  Hearing her break down on the phone is hard, but she needed to be told.  Chris has disappeared outside for a smoke and he says he’s rung and told Pat.  Can tell he is feeling it as well.

Have sent texts updates to some mates as well as letting Moira’s parents know.

Am amazed at level of support being offered – quite humbling.

Ruth is back with the drugs and Pat, so we’re all here now.  Mood is somewhat subdued but that is to be expected.

An hour or so later and Chris & Pat have gone home, Ruth and I have been to get some tea and we’re settled in for the night.

Off to bed  at quite an early time – been falling asleep on the couch, so might as well sleep in comfort.

What a hell of a birthday this has turned out to be.

The Verdict is in

Mr Morrissey has arrived to tell me what he found and did, etc.  He doesn’t mince words and I’m actually pleased about that.  Seems he’s 80% certain we’re dealing with cancer of the tonsils.  First thought is never heard of that before.  Next thought is, OK how do we deal to this?  Seems it responds well to treatment with chemotherapy and radiotherapy.  Like most cancers, mark of success will be 5 years cancer free.  Seems he took a fair chunk of my left tonsil for biopsy and has sent samples to the pathologists at both Hutt and Wellington hospitals.

I’ll have a follow-up appointment with him Monday week (10^th) and once Rose is happy I can eat and drink without throwing up or haemorrhaging, I can go home.

One thing that crosses my mind is why didn’t he take out the whole tonsil while he was there if he is that strong on the problem.  Will obviously be one of many questions for the follow-up.

Egg sandwich duly arrives, followed ½ an hour or so later by the jelly & ice-cream.  Seems one sandwich was actually sufficient – not exactly easy to swallow (vindicates decision not to have corned beef).  By the time have taken numerous small bites and chewed as much as possible before trying to swallow, almost too tired from effort to eat anything else.  Effort is akin to eating full meal, not just one sandwich.

It is around now that I’ve decided that given Mr Morrissey’s level of certainty, it’s time to face the reality and hence forth I’m dealing with cancer.

With that in mind, I’m now faced with when to tell those nearest and dearest to me.  I’ve decided that not telling anyone until I’m home and they’ve gathered around is best course of action.  That way nobody finds out before anyone else, etc.