Monday, May 31, 2010

The weekend was marvellous

The weekend was marvellous.  I ended up just chilling most of the time and honestly feel better for it.
I'm almost fully recharged and ready for the next round.

To that end, I decided to ring the radiotherapy team today and find out when they were going to do the mask.  The conversation went something like this:
"Have you had your teeth done?"
"Yes on the 14th."
"Was that just the examination?"
"No, they took out the 4 wisdom teeth and 1 more for good measure."
"Is the swelling all settled down?"
"Yes and I've also had my follow-up with Mr Patel and he is happy with the result."
"What about the peg?"
"That went in on the 19th and is as good as gold."
"Have you seen the medical oncologist?"
"Yes, saw Catherine Barrow on Friday."
"Did she have anything else she needed?"
"Not that I'm aware of."
"So, what are you doing tomorrow?"

Well, now I'll be spending 3-4 hours at Wellington Hospital to get the mask sorted.  Appointment at noon will make the mask, then I disappear until just after 2pm.  At that stage they'll check the mask and start to do the marking up, etc for where the nuking has to go.

Seems because of the treatment area, I'll be getting a long neck mask.  I'm not sure if I get to bring the mask home, but I'll try and get a picture regardless for posting tomorrow night.

Yet again, I've opened my mouth and brought on "medical intervention", but this time I'm really happy as it will mean we can get some dates set for when the treatment proper will start.

In preparation of the all day chemo appointments, I've ordered an e-reader so I can read easily while I listen to the iPod and just chill.

Yep, I'm tinged with some degree of nervousness as we're now on a countdown to battle.  At the same time I want to get this started so it's over "quicker".  Strange comment I suppose.  It will be seven weeks of treatment regardless of when it starts, but I don't want TC having one minute more than necessary to go on a road trip around my body.  And I want my recovery well and truly on the way so as not to miss any good summer weather.

Saturday, May 29, 2010

Yippee! A Painkiller Free Weekend Awaits

It's quite interesting how 2 hours can make such a significant change to your life.

First appointment this morning was with the endoscopy unit to have a little check-up for Jake.  They were amazed that the district nurses hadn't been in contact (because if they had, they would have been my first port of call apparently), so looks like I'll have to make a gentle enquiry to them next week.

Anyway, they were very happy with Jake's progress after only a week and weren't bothered about the "seepage".  As a result, the odds of me having a medical-intervention free weekend have just shortened considerably.

Next up, Catherine Barrow, Medical Oncologist.  Having found my way to the relevant place, was amazed that my arrival was written down on a piece of paper and the receptionist scurried off to let them know I was here.  Seems the entire hospital servers were down and there was a degree of mayhem everywhere as treatment regimes, etc couldn't be verified, printed, etc.

While I waited, I saw a fellow patient come in who had the nasal feeding tube fitted,  It was taped to his nose, rested over one ear (where it was taped to his neck just in front of the ear) and hung over the other one with the feeding valve just hanging there.  Jake certainly seems a whole lot better solution to me.

Now time for the main event of the day.  I was shown into a consultation room, where I was joined by Catherine within a couple of minutes.  We duly go over why I'm here, what I've been through so far and what is going to happen next.  Catherine is happy with my general state of health, but hasn't seen the kidney test results.  I explained that Magda seemed happy and that was sufficient for Catherine.  My chemo routine will in fact be once every three weeks (Wendie was right), not weekly as indicated by Mr Hamilton and will utilise Cisplatin.  The cisplatin will be administered by an IV they'll put in each time - thus eliminating a potential other procedure for fitting a hickman line, so another victory.

Treatment should be administered on Mondays and I'll receive up to 3 treatments in all, depending on if any need to be rescheduled.  First one will be day 0, then 3 weeks after that and the final one 3 weeks after that - so just nicely fitting into a seven week radiotherapy schedule.  Now for the fun bit.  Seems the chemo will be an all day exercise on each occasion.  They'll start with pumping fluids into me for a few hours, then administer the cisplatin, then pump more fluids in after.  Obviously part of the desire to ensure the stuff gets diluted on its way out of my system.  Apparently, this will have a side effect of making me want to go to the loo a bit more.  Reckon?  I'd expect, in fact hope, it would have that effect if they're continually adding fluids for such a period of time.

Speaking of side effects, there are some potential doozies.  apart form the expected ones of vomiting and anuses and a stuffed immune system (38 degrees), seems I could get numbing, tingling or weakness in my arms or legs.  Could also suffer a degree of hearing loss and if I don't tell them about it if I do experience it, the loss could become permanent.  There is a big difference between selective deafness (we all suffer from that from time to time) and the real thing, so my full and open disclosure policy will come into play here as I don't want to suffer the real thing just because I didn't tell the medics.

Seems hair loss may not actually come into play, but remains as a potential side effect.  Another potential side effect was however totally unexpected.  Seems the treatment might cause my diabetes to flair up quite nastily, so I'll need to go and see Tatiana and discuss that.

We're agreed that the chemo will act as a scatter-gun and should pick up any errant lymph cells, but there is no guarantee.  I do however get the feeling that the three weekly cycle will deliver a dose that is sufficient to knock the bastard off.

My chemo booking has now been forwarded to that team and all they need is confirmation from radiotherapy as to when they want to start.  That means it is now most likely earliest start date will be the 14th of June.  As I should only have the mask to deal with between now and then, that should really give me a good amount of time to get the body batteries recharged ready for the main event.

So, the two hours spent medically today have indeed had a significant effect on my life.  I now know what the chemo is going to entail - one of the last pieces of the jigsaw - and there will be no medical procedures on me for the foreseeable future.  In fact, the next couple of weeks should be pretty disruption free.  To celebrate the boys and I are going out for a few drinks tonight and it will be my first "normal" weekend for quite some time.

As you'll no doubt have guessed by the timing of this post, I didn't get around to finishing it last night before I went out. 

Good night had by all and looking forward to doing some of that remaining unpacking today.  HRV system was installed yesterday and that represented the last of the medical related changes to the house that I needed to make, so there is starting to be lots of closure on things that will leave me free to concentrate on dealing with the upcoming fight.

Thursday, May 27, 2010

Tomorrow's Friday And....

I tempted fate.  Should have just kept my mouth shut and all would have been right with the world.

Yesterday was first day back at work for can't remember how long.  A late start with getting the stitches out, but Mr Patel was really happy with his handiwork and my recovery.

Was really good being busy and around people, but had to leave work early because I was plain knackered.  Each day I'm regaining my strength and aim is to be as close to 100% as I can get before treatment proper starts.

As they say, "take one day at a time" and I have a new appreciation for that now. Can't try to go charging back like nothing has happened - I've had 3 procedures in 3 weeks, so need to acknowledge the need to recuperate.

This morning I feel another step better, so looking forward to an even better day.

Anyway, back to tempting fate.  In the last post I closed with: "Tomorrow I have an 8:20 appointment to remove the stitches in my mouth and, believe it or not, that is the only medical appointment I have for the rest of this week.  I hope I haven't tempted fate".

Well, I did.  My appointment with the medical oncologist - Catherine Barrow - is now scheduled for 10am tomorrow.  Not sure what we'll be covering off, but will know by this time tomorrow.

I've also arranged to go and see the endoscopy unit at Hutt on the way through.  Seems Jake is dribbling around the stoma (the hole in my stomach).  It's not huge amounts, but better to get it checked before we get too far down the path.

So, yet again, Friday will take on a medical feel.  At least it isn't going to be as intrusive as others have been.

Tuesday, May 25, 2010

One More And The Rest Of The Week Is Mine

I made a conscious decision before going to bed on Sunday night - I'm not going to set the alarm to wake me up.  For me, this is out of character, because even if I feel off colour when I go to bed, I'll still set the alarm and make a decision based on how I feel then.

The weekend had been nothing short of horrific for me and while I looked to have finally overcome the majority of the pain and discomfort issues, I was totally exhausted.  Waking up at normal time wasn't going to be an option.  This time it would be let my body decide when it was time to wake up and then let's see how I feel.

As it turned out, the cats had somewhat of the final word on when I got up.  They hounded me out around 7:30 which equates to something like an extra hour and a half sleep for me.

Having feed the little darlings, it was quite clear that I was still in no fit state to take on the commute, so Monday would be a stay at home day.  Great, can finally get into that budget stuff I need to do.  Not so fast.  

Having logged in to work and started to deal to the way too many emails that greeted me, it quickly became evident that my concentration span was rather impeded by my low energy levels.  I just couldn't sit in front of the screen for more than a few minutes without  feeling the need to walk away.  Eyes would start to feel strained and had to re-read so much stuff.  OK, this was going to be another largely recovery day, with some work slipped in as and when I felt up to it.

As it turned out, it was exactly what I needed.  Kylie rang to see how I was and asked if I was up to visitors - she and David would be up in an hour. Now, I've said this before, bit I'm going to say it again.  My employer is being absolutely amazing about all of this.  David is the Managing Director and Kylie is his minder effectively.  For there guys to make the time to come and visit is something really special as I see it.

They arrived just before I was about to give Jake his breakfast and ended up staying for a couple of hours.  For me, it was like therapy.  We talked about work and all sorts of other weird and wonderful things and at the end of it, I felt normal again.  Of late, a lot of my conversations have tended to be pretty focused on what is going on with TC, so it was nice to have that to some extent pushed to the back.

Had a similar experience on Sunday with some of the visitors that came and went during the day.  Need to reset the topic(s) of conversation going forward me thinks.  One thing that Wendie said on Friday that I don't think I mentioned before, is that the biggest hindrance in the fight is often the social disconnection / isolation that occurs.  While I can understand people have a genuine interest to know what is going on and how I'm feeling, to let this dominate conversation is unhealthy for all.  This blog was meant to be the medium for people to know/understand and by doing that, people could be in my corner supporting me.  I think I've fallen back into somewhat of a bad place and if I don't rectify the imbalance, I run the risk of alienating myself from my support crew by only ever talking about the fight against TC.  The other side of the disconnection / isolation is obviously me withdrawing into myself, so I have to be very conscious of striking the right balance in all of this regardless.

Anyhow, by the end of Monday, I'm starting to feel a little more energised - and hungry.  At last my appetite seems to be coming back and I had a small pork roast meal for dinner. Yummm.  No after affects and body seems to be behaving quite normally.

Things seem to have settled down so much, that when I go to bed, it is back to normal pillow (as opposed to elevated sleeping position).  Alarm clock is set as Tuesday is Hospital day.

When the alarm went off this morning, I was ready for it to go off.  I felt like I'd had enough sleep and crawling out of bed wasn't a chore, although I was naughty and lied in for an extra 10 minutes.  Today was the test run for me giving Jake breakfast and it actually took a lot longer than I'd thought it would.  By the time the extra cleaning (Jake isn't totally house trained) in the shower is taken into account and the careful choice of clothing to ensure he isn't going to get tugged at etc is made, I'm regretting that extra 10 minutes under the blankets. And that's before I go through the flush/feed/flush routine.  All of a sudden, getting to Wellington Hospital by 8:45 on a nasty rainy day seemed like it was going to be a challenge.

Long story short, I got there about 8:47 (new parking facility is a joke) and Magda duly led me into the imaging room.  Today was all about testing how my kidneys deal with radioactive material.  In fact the information pamphlet even said I should avoid contact with pregnant women and young children for the rest of the day.

First stage of today involved then injecting the radioactive stuff into me and imaging how the kidneys handle it.  Was quite cool to watch, but as it took 30 odd minutes, decided to snooze through most of it.  Magda explained what the images meant - basically the kidneys start out looking like, well a kidney bean, and when they detect the foreign gunk, they absorb it (changing shape as they do) and then make little funnel type things where they squirt it down into the bladder.  Magda was quite happy with what she saw, so hopefully a full analysis/review doesn't change that.

The rest of the day revolved around hourly blood test that will enable them to confirm/calculate how quickly the toxin is moved out of the blood.  They put in a cannula for ease and every hour for four hours I would go to reception so the computer would know I was there, go through to the waiting room and then get two samples of blood taken.  They also flushed back in some saline and anti-blood thinner after each time.

I'd gone prepared to do some work during these hourly bits of downtime, but bugger me the broadband stick didn't work, so best laid plans and all that. This meant boredom was going to be an issue.  Fear not though, the cavalry is coming - Kylie and David are going to bring me lunch and keep me company for a while.  Lunch ends up being McDonalds- aah, the pleasure of plastic food again - and it was quite funny as we sat in the main entrance of the hospital eating junk food.

Sanity restored with some more really good discussions, the time eventually passed, but I was exhausted for having done nothing all day.

Tomorrow I have an 8:20 appointment to remove the stitches in my mouth and, believe it or not, that is the only medical appointment I have for the rest of this week.  I hope I haven't tempted fate

Sunday, May 23, 2010

Jake & Me

Today is Sunday, so Jake has been hanging out for a few days now.

His first day he stomped all over me and made me feel like shite.

Thursday he wasn't much friendlier - and given we're going to be together for 3-4 months, you'd think he'd start to make an effort.

Friday, he seemed to be running the show. I had no ability to make decisions and when I decided to test him, he delivered a telling blow.
Ruth and I were going to have steak & kidney casserole on Wednesday night - my first real feed since the teeth.  Events overtook that, with the hospital moving the procedure forward.  So, safe at home, we decided Friday night would be the goer.
Jake had his strawberry smoothie mid afternoon, and taking on board Wendie's comment not to underestimate how this would fill me up, having a normally timed dinner around 6:30 didn't seem unreasonable.

Breakout - seems the hospital got it wrong about my feeding regime.  When the time comes and I need to use Jake in earnest, I'll be supplied with a small drip stand, 1 litre bags of food and hook myself up when I go to bed.  Drip will be set to do its thing over a 8-10 hour time frame, so I'll get up in the morning, flush Jake and move on.

Back to it.  Thoroughly enjoyed the casserole and I swear at about the time I took my last mouthful, my whole stomach seemed to spasm.  Breathing became difficult, the shoulder pain kicked in for good measure and I suddenly felt 110% bloated.

OK, so given I hadn't been eating anything you'd even call borderline substantial for over a week, my stomach might have shrunk a bit, but still I didn't even have more than 1/2 - 3/4 of what size meal I normally would have.

I've now decided Jake has an evil streak.  Friday night (made getting anything resembling comfortable in bed rather painful to achieve) and all day Saturday all I wanted was a combination of good burps and farts to try and loosen up the bloated feeling.  I punished Jake by not giving him anything to eat at all on Saturday and early evening I had my only solids for the day - a cookietime cookie.

Mr Stein had rung during the day and I told him of my predicament and he said it normally takes a few days to settle down and to call him if it was still an issue on Monday.

Attempts to loosen the bloating came to nought - some normal coke did provide temporary relief - but at around 8pm last night, I woke up (on the couch) and suddenly felt a little less tension/pressure.  Was Jake conceding he'd been a tad mischievous?  Was he as hell.  Still couldn't loosen more and while it was marginally better, the whole bedtime thing was still a mission.

Sunday - the day of rest - yeah right.  Bloody bloating is really getting me down, I'm now totally exhausted and just going through the motions of normality.  Decided to change from the paracetamol/codeine mix painkillers to just paracetamol to see if that helps ease things.  Also, as the dietitians want me to weigh myself weekly, I bought some scales yesterday and when I weighed myself fully clothed seemed to have lost about 2 kg over the last couple of weeks.  When I repeated the exercise this morning, dressed just in my pyjamas, I got a tad concerned.  Overnight there had been a quite substantial loss of weight.  Sure the clothing vs pj's would have had some effect, but when I reweighed myself later in the day fully dressed, there was still a sizable drop, so it wasn't a false reading.

Normally, I'd jump for joy, but in this case, this said to me that my body was not getting anywhere enough nutrients and I need to make sure it does before I step into the ring with TC.

So, Jake had chocolate for breakfast, to hell with any other consequences.  By the time I took my 2nd round of painkillers, I was starting to feel a little better.  Ruth arrived with some de-gas pills while I was feeding Jake, so I popped a couple of them as well.

Progressively during the day I've started to feel better.  Still some pain in the shoulders, but am now burping regularly and feeling considerably less bloated.

Which of all these changes has brought about the relief, I don't know, I'm just glad I've finally got some.

I hate being idle, but over the last couple of days I've felt like a passenger along for the ride.  Concentration levels are well down, I've had absolutely no desire to do any work (and believe me I was keen to), but even if I did find the desire, discomfort levels would have screwed it up.  

Where to from here?  What I need is a really good pain-free night's sleep.  If I don't get it, I'm working from home tomorrow.  No way am I subjecting myself to the commute feeling like I do right now.  Washed out is a mild description of how I feel right now.

Food wise, think it will be softly softly for the next couple of days.  See what the system will tolerate and find out what portion sizes work.  Tonight will be a single slice of toast for me (Jake's already had his meal for the day) and depending how that sits after an hour or so, will try another one.

Jake has proven his point in two ways.  Firstly, the reason he is there has already been driven home - I need nutrients getting in one way or another.  Secondly, if I look after him,  I'm actually helping myself.

So, where is my relationship with Jake right now?  He doesn't eat much, is cheap to feed (state provides all his meals), eats whatever you want to give him, doesn't argue about what's on TV, doesn't drink my beer or use all the hot water and is clean and tidy.  You could call him a perfect housemate.

Maybe he won't be such a bad fellow to have around for a few months after all.

Claustrophobic Anyone?

Seems once I've had my kidney tests on Tuesday, there will only be two more hurdles to cross before treatment proper starts.

First, the appointment with the medical oncologist to go over the chemo treatment and the radiotherapy mask.

Back to the chemo for just a minute, seems as I'm having it weekly, the dosage will be lower than if I was only having it once every three weeks.  First dosage will be same day as the first radiotherapy - sounds like that will be a fun day, not.

Now, the mask should take a couple of hours to make and they're considering doing that during the downtime in my kidney tests.  Interesting off-the-cuff comment from Wendie was that whole actual radiotherapy process only takes literally a minute or so, but the majority of time is spent setting up the equipment and screwing the mask down.  Pardon me?  It's quite logical really - the mask has to be a perfect fit to my face, the head has to be in exactly the same place each time, so obviously restraining the mask will achieve that.  so if you're a bit unsettled, claustrophobic, etc, this could be a rather stressful process.

Then Wendie said my new favourite words: "don't worry, if it upsets you, we can medicate".

While I seem to be going on about medication quite a bit, I don't want to overlook the fact that the team is there to ensure I get through my treatment with as minimal upset as possible.  The only time they'll actually stop treatment is for clinical reasons, apart from that they're going to be in my corner doing whatever it takes to keep me on the straight and narrow.

Some Light Bedtime Reading/Viewing

Wendie has left  behind a plastic satchel full of books - as well as a DVD: "looking after yourself during chemotherapy".

There are all sorts of books from the cancer society and my own diary/planner to record the various appointments.  These guys are obviously pretty on to it and I'll slowly start working my way through them, especially the one on neck/head cancers.

Seems I really drew a short straw with TC coming to play.  Off all the cancers contracted, only approx 4% are neck/head ones.  So, not only was I unlucky to get it at all, I'm really unlucky to get such a rare one.

And to add salt to the wound so to speak, treatment for neck/head cancer is one of the most intensive.

Apparently not too long ago, primary treatment was operation to cut it out.  Now they see that long term benefits of treatment regime I'm about to start is superior, even though it obviously has a longer recuperation time.

Don't be a Hero - Medicate!

Wendie and I also discussed medication options and I told her how I'd consciously not taken painkillers after both the biopsy and teeth.  Also told her how Wendy (the Hutt Hospital nurse) had made me see the error of my ways in that it was better to manage the pain from the outset in a controlled fashion, than to have to come in and fight it once it got control and was making things unbearable.

There is now no doubt in my mind that these people know what they're talking about and there is nothing to be gained by me taking an heroic stance and trying to tough it out.

Hence forth, I'm totally behind Wendie's mantra: "there is no upper limit to the pain relief we can offer you".  Yippee - bring it on.

Allow me to assure you that Jake's arrival has seen me only too willing to make use of the prescribed drugs - no more heroics from this boy.

38 takes on a new meaning

When I decided to call this blog 38dollarlife, it was meant to link back to how my $38 doctors appointment had probably saved my life.

Now, thanks to Wendie, I have another 38 to consider and this one is a tad more sinister, not that TC isn't.

Once I start my chemo, my immune system gets knocked around rather nastily and I will therefore become prone to infections.  If there infections are not kept at bay, things could turn nasty.

My new 38 is body temperature.  If my temperature hits 38 degrees, I will need to call an ambulance and go straight to Wellington Emergency.  Why?  If I don't I could end up with full body sepsis.  This isn't negotiable either - if I feel under the weather and decide to sleep it off, odds are stacked that I might not wake up the following morning.  Newest addition to the armoury will therefore be a digital thermometer.

On the plus side, I now have a VIP card for Wellington Hospital that will see me attended to ahead of the normal drunken rabble.  Once they've got intravenous drugs going into me, they might put me in a corner and forget me, but I won't have to wait hours to be seen.

Another potential issue with the chemo is the post-treatment vomiting.  Apparently, if I vomit once, that's fine, but twice is another red flag that involves speedy medical intervention.  Because the chemo is so toxic, it is critical for me to get fluids consistently through my system to dilute the chemo and help the kidneys pass it as quickly as possible.  Vomiting means not retaining the fluids needed, means nuked kidneys.

I've already been given a medication chart that sets out what drugs I will take when after each chemo session.  Part of this regime involves me having some ampoules of one of the drugs on site, so the district nurses can administer it.

In summary - Chemo is nasty shite and Wendie has laid out the rules in very clear terms.  Given I'm in this to win, the rules will be followed to the letter - if in doubt, scream out.

Hi I'm Wendie

At noon on Friday Wendie arrived to see me.  Wendie is my community oncology support person (I got her name wrong in my Thursday night post).

By the time she arrived, I'd been up for a couple of hours after a considerably better night sleep than I had in the hospital the night before.  Not to say it wasn't without its challenges though - trying to get into bed would have made people laugh as I tried to figure out if lying on my back or side would work, how many pillows  / what angle made me the most comfortable, etc.  The fun stated all over again when it came time to get up.  Body was now used to lying down, so moving to a sitting position  was a good reason to send pain through the shoulders and stomach again.  Tried lying down to make pain go way, and it was a catch 22 - by then the body didn't want a bar of anything.

Eventually got to a stage where I could sit on the couch and providing I didn't breathe too heavily, the pain was manageable.  After a couple of hours, things seemed to settle down and I had more freedom of movement, providing I was prepared to put up with the shoulder pain.

So, that has got me back to Wendie arriving.  She is a lovely English lady and one of those people that possesses the ability to make you feel at ease.  Given some of the stuff she subsequently went on to tell me, I also got to see her more determined side.

By the time she left an hour and half later, I had a much better understanding of what is going to happen when and what to realistically expect.  Most important to me was I now understand the army of people working behind the scenes to help me win this fight.  All I have to do is be willing to accept their help, and I think I'm now ready to do that. My stubbornness and sense of independence would normally get in the way, but the light bulb has gone on - this ain't going to be easy and the more people who are lining up on my side the better.

Meet Jake

Is That Light I see?

This posting has been a couple of days in the making, literally.

I've tried on numerous occasions to sit down and get it finished, but each time the pain in my shoulders and stomach have meant that I've been able to spend minimum time in front of the laptop.

Even now, every minute or so, I'm getting twinges across my shoulders.

What I've decided is to scrap everything I'd partially done and start again.  Benefit is that my head is a little more sorted now and I might actually say something meaningful.

A lot has happened since the last post, so I'm going to break it all down into a series of mini-posts as much on a subject related basis as I can.  Sorry, means there is more than one post you'll need to read now, but hopefully because they're shorter it will be easier.

Thursday, May 20, 2010

Did Anyone See That Bus?

OK, all bullshit aside here, my chest feels like a bus has driven over it - and it's over 24 hours since the peg was inserted.

No apologies for the length of this post.  In accordance with my mission/goals here, I need to get this stuff out of my head.

Yesterday started reasonably well.  I arrived at the hospital early and low and behold they called me in 1/2 an hour early - apparently everything was going better than planned in the endoscopy unit.

First sign of the things to come was that as part of the informed consent process (normally where they tell you about risks, etc and you sign their piece of paper) they require me to watch a video of what they're going to do to me.  Sorry, but that just seems plain scare tactics.  If I wasn't so committed to hitting my old mate TC (tonsil cancer - figured by making it more animate, easier to focus on punching its lights out) out of the park, I'd have said no thanks and walked out.  Again, I was too honest for my own good.  They were a tad flustered and had me on the table ready to go and I (now) stupidly asked about my informed consent.  They obliged by showing me - and everyone else in the waiting room - the aforementioned video.

As an aside, you'll be pleased to know it isn't only us mere mortals that get annoyed with PCs. They had this video on a pc compatible file, but couldn't find it.  Then when they did find it, the sound clapped out.  Other files of other procedures worked fine, but this one didn't - another warning sign.

Anyhow, next piece of stress.  They will sedate me and I'll probably hear them talking to me during the procedure.  Beg your pardon?  Guys, you need to knock me out, my gag reflex is now legendary and it will make your mission impossible to achieve. (Like the movie link? although for my money the TV series was a lot better).  Mr Stein thinks they may have underestimated the amount of sedation required for a lad my size and promises to remedy it.  End result, I don't remember a thing.  One more victory for the not-so-little guy and an instant like for the guy.  I did ask if there was a choice to be had as to what side this thing was going to be fitted, surprisingly the choices were rather limited to 1 - central and about one hand width above my belly button.

A slight break here.  Even sitting here typing this masterpiece is bloody painful - you'll hopefully understand why when I come to the side effects bit shortly.

Have no idea what time I woke up, but there was a nice young nurse by the name of Summer waiting to escort me up to the medical ward.  Due to a shortage of porters at that time, my journey also involved a trainee nurse who was working in endoscopy.

At this time, my stomach is absolutely tight with pain.  Know that might sound strange, but is best way of describing it.  It felt really bloated and hard and the pain was something I'd never felt before - easily surpassing the tonsil biopsy and loss of 5 teeth.  Sure as hell not thinking about my jaw any more.  Even with this level of pain, what was worrying more was this sharp,burning pain across my shoulders.  Seems (here is the side-effect bit) that when they're making the hole in me, they deliberately (?) let air in and this air likes to settle around your shoulders and provide hitherto unimagined levels of pain for a couple of days or so.  That wasn't in the video and nobody mentioned it either.

For those who haven't taken the time to google gastric peg, here is the abridged version.  Process involves shoving a scope down your throat and into your stomach (they spray the back of your throat to numb it - tastes terrible, but does work).  This scope has a light on it, so they press on your stomach to see where the light is and use that as a guide for cutting through and inserting the peg.  Peg is held in place on the inside by a balloon and the visible/external "hardware" consists of a flange type arrangement (that you need to rotate 360 degrees daily), some tube, a clamp to stem the flow and a nice little Y joint that has one flange named "flush" and the other "feed" through which I'll get to do the business. Yep, I get to do it.

Practicality time here - no way will there be anything other than loose fitting shirts worn for the next little while.  There is no way you could possibly call this arrangement discreet.  I've also been giving some thought as to the issues wearing a seat belt will pose.  In the Vette, shouldn't be too bad as the belt goes left to right and above the peg.  The HSV will be another issue and may require a small pillow for "protection".

So, I'm now in the medical ward feeling like death warmed up.  I'm in a 4 bed room and it's me, two guys and a Maori lady.  At this point, I'm going to smash your illusions - my first night in a hospital was anything but enjoyable.  The staff were brilliant, don't get me wrong (two different nurses throughout the night - first one was a tad grumpy, but 2nd one was a little honey), but with being woken every 3-4 hours for blood pressure and blood sugar testing (meant I was eating ice cream at 1am to try and stabilise that), the lady deciding she couldn't sleep so turning on her TV at volumes that showed no concern for those of us trying to sleep and the coup de grace being that the tests for the other inmates were at different times to each other, so you had 4 regular interruptions just for the tests.  The lady also failed to grasp that she wouldn't disturb us as much if she spoke in hushed tones.  One thing you don't need to hear in the middle of the night in full voice is "I've messed myself".

The blood sugar tests were somewhat amusing.  The hospital has embraced my apparent type 2 diabetes status, yet everyone else is happy to just let it ride in light of everything else.  As you'll have read above, despite not actually eating any food - bar jelly and ice cream for dinner (kindly fed to me by Ruth because I couldn't even hold the spoon due to the shoulder pain) - my sugar levels did actually spike, so this the 1am feed.

At some stage yesterday afternoon/evening, the nurse flushed the peg, fed me through the peg and then flushed it again.  Ruth watched this, I tried to deal with the pain.

Diversion again - despite my efforts to minimise use of drugs to manage various pain, I'm now embracing everything they offer me.  I now accept that if they put in place a pain control regime, ultimately it is better for me than admitting I need some help after it has taken hold and it then taking 2-3 times as long to get some relief actually working.  Morphine elixir rocks!  Shame they didn't give me some to bring home.

One battle last night was finding a position that minimised the discomfort.  We finally found a reasonably acceptable spot, ruined by a need for me to go to the loo.  Now at this stage I'm feeling really bloated and hoping a good burp and/or fart or two will alleviate some of the pain.  Not prepared to risk any unplanned accidents, seems a trip to the loo is putting safety first.  I'll not go into details, but even that wasn't a simple process and once more highlighted how dependent I'm becoming on others.

Trying to stand after getting out of bed to go to the loo resulted in a bout of nausea, hot and cold sweats and that unbelievable pain in my shoulders.  For some reason, I was back in bed pretty quick with some drugs going in my cannula.  About 1/2 an hour later and with the aid of a walking frame, my loo trip resumed.

Having survived the night from hell, shift change sees Wendy come on as my nurse.  What a wonderful lady - credit to the profession.  During the course of the day she makes me do the flush/feed/flush myself and delivers an emergency kit for in case the peg falls out.  Seems the hole will close itself up in 2-3 hours and I'm meant to insert this temporary tube 10 cm into my stomach to prevent that.  Now, it seems to me it will take a whole lot less time than 2 hours to call an ambulance and get them to sort it - seems a totally more acceptable solution to me.  Anyway, seems I've now got to carry this kit with me like a safety blanket.

Also found out that  the stuff they're "feeding" me with is a supplement, not a meal replacement.  If/when the need arises to utilise the peg in earnest, I'll be attached to a drip stand that will have a fair dinkum bag of nutrients attached.  In the meantime, I need to flush/feed/flush once a day for the next week or so (and rotate the flange thingy daily).  I've come home with a stock of syringes (flush is 50ml, feed is 200ml, syringe is 50ml), "food" and all sorts of other stuff.  Ironically, the" food" is flavoured, but that is of course lost irrelevant as it is going through the peg.  The peg comes with it's own "user manual" and despite it being a rather daunting thickness, the English part is only about 6 pages long.

During the downtime, had a visit from Paul the dietitian who explained the peg deal some more and I made acquaintances with my fellow inmates - Ben and Jim and I had a fair old chat and exchanged war stories.

Some final instructions from Wendy and I'm clear to go home - yippee, the female inmate had messed herself twice more since breakfast, so wasn't keen on being there for the threepeat.

Now Ruth had been with me all day and our plan was for her to bring me home, but the high level of discomfort I was (and still am) feeling meant that getting in to her FTO wasn't really an option.  So, call to my main Taxi - Chris  - and that is a problem ticked off.

Another little bravado factlet.  While I was waiting, decided to take a walk around the ward.  Well, made it about 3 steps outside the room and harsh reality set in that this was a  pretty bloody painful exercise.  Had intended to stop at Harvey Normans on way home to get new cordless phone, but anything but a direct trip home was now off the agenda.

Fortunately, Wendy organised a porter to take me down to the car and I didn't care how "sad" it might have looked, I was thankful for it.

Chris duly delivered me home, Ruth went and got another prescription for painkillers filled and I settled in on the couch.  Found an acceptable position quite quickly and just as quickly, Mindy & Dexter decided to come and welcome me home.

Since getting home, I've overcome dropping my cell phone on the floor - in case you hadn't guessed, bending over/down is off the activity list currently.  You'd be proud of my ingenuity involving an umbrella to get it up off the floor.  Ruth has been and got me some tea  (ssshh KFC - it was gooood) and she has also fed the cats (another one of those off limits bending activities) and will come back in the morning to do that again.

I've also been ingenious again in getting hold of the stereo remote from a drawer in the rather low coffee table to turn off the alarm in the morning and have managed to get myself into my pyjamas and get down into the office to write this.  Every so often, I'll move suddenly or breathe funny and I'm aware the drugs taken 90 minutes or so ago have only taken the edge off things.

So, there it is, the final procedure required before the full blown treatment starts is now behind me, sort of.

What else is in my medical diary?  Well, Matthew has confirmed the kidney tests will be Tuesday at 9am, Helen from Community Oncology support is coming to see me at noon tomorrow and I have my follow-up with Mr Patel on Wednesday morning.  I can expect to hear from the community nurses in next few days as they'll come and check on Jake (jake-the-peg haha) on a routine basis.

Thanks to everyone who has helped me out and/or cheered me up (nice text Phil, still waiting for the hookers) over the last couple of days.

I really hope I feel better tomorrow.

Wednesday, May 19, 2010

It Had to Happen

Yesterday turned into somewhat of a circus with people seemingly fighting over my body.

I started the day all prepared to be spending today at Wellington Hospital having my kidney tests.  The day ended with me unsure whether these tests will now occur on Monday or Tuesday, but knowing that today I'm having my gastric peg inserted.

It all started with Anne ringing to ask if they could do the peg insertion on Thursday instead because they didn't want me in hospital over the weekend.  Seemed a reasonable request and apart from stuffing up my work plans, there was no reason not to accept.

Later in the day, the fun really began and it confirmed the left hand doesn't know what the right hand is doing in relation to my care.  Anne rings again, very apologetic, and asks if they can do the procedure on Wednesday instead as they won't have two doctors available on Thursday.

Now the fun really begins.  If I say no, then they want to do it on Monday instead.  Given how this week has been screwed up anyway, I was keen to keep next week as disruption free as possible, so what to do?  I told Anne about my current plans for Wednesday and desire not to push the peg to next week.  Perhaps it was a mistake, but I suggested I talk to Matthew about potentially moving the kidney tests to Friday.

Now, I think I should have left it to them to fight it out as to who got my attentions and body today, but my desire to have some control over this stuff meant I was now doing the negotiating.

Eventually talk to Matthew and he is working to a timetable requested by Mr Hamilton, but he (surprise, surprise) isn't aware of what else is happening to me.

End result, we agree that the peg is probably more important that the tests (radiotherapy is due to start ahead of chemo and there have been no discussions about what is starting when anyway), so Hutt can have me Wednesday and he'll confirm whether the tests are rescheduled to Monday (late morning start) or Tuesday (9am start).  One benefit is he'll talk to the radiotherapy guys and see if they can do something about the mask during the down time between my blood letting.

Decided to goggle "gastric pegs" and, as I did after googling "tonsil cancer", wish I hadn't done so.  The problem with the cancer search was there are so many different sites all saying different things.  As a result, I decided the only people I needed to listen too are my specialists - they are the ones dealing with my specific circumstances.  What happened to someone on the other side of the world isn't relevant as I see it, regardless of how similar things might be.

Reading about how they insert the peg/tube has made me feel somewhat squeamish, but fortunately I saw the word "sedation" so trust I'll be out for all of this.

Today will be my first ever night spent in hospital and while to some extent I'm seeing it as an adventure, I really would prefer to be coming home today.

I know very little about what is going to transpire today, but given they are actually inserting it direct into my stomach and can only assume they will also want to test the peg at some stage, staying in hospital overnight makes good sense.

Seems I only have to pack my toiletries and pyjamas, but as I hope to be up and around, a robe and slippers will also go in.  Considered taking the laptop with me to do some work, but figure in reality (hoping for early morning discharge on Thursday) it's not worth the effort for such a short time.

I am somewhat annoyed I am not allowed to eat or drink this morning as I'm due to finish my antibiotics today, so will take them with me and discuss with Doctors if I finish them or forget them.

Jaw still sore / tender today, but feels better with each day.

Tuesday, May 18, 2010

Fridays aren't Fun AnyMore

Yesterday was somewhat of a testing day, and to some extent I failed the test.

Three medical related calls in 1/2 an hour screwed with my head for the morning and struggled to get back into the right space until after taking a short lunch break.

First call confirmed my Wednesday appointment as already discussed.  Second call was from the blood/cancer unit at Wellington Hospital regarding an appointment with the medical oncologist.  Not sure how this differs from what Mr Hamilton does, but now have a cell phone number to call if I don't receive an appointment within two weeks.

Third call was literally as I hung up from the 2nd one.  This time endoscopy department at Hutt Hospital trying to organise an appointment for them to fit the gastro peg within the next 7 days.  I suggested this Friday and they went away to see if that could be done.

I know this timing is of my own doing, but figure Friday's at least give me the weekend to recover.  Anne came back just after 4pm to confirm Friday was confirmed.  Need to be there at 11am and will be admitted for the night.  My first overnight hospital stay - something new that I've never experienced before.

This will be the 3rd procedure done on a Friday - Tonsil biopsy on Apr 30th, Teeth extraction last week and now the peg this Friday.

I've had some time to think about what got me down about all of this yesterday and put it down to a number of things.  Firstly, until now I understood what was going on and why, but am now entering a phase where we have had only very brief discussions or no discussions at all about what is to happen.  Those that know me will know that I like to be in control of things and having things coming at me from left field  - especially medical ones - just doesn't sit well with me.  Understand the means to an end thing for the ultimate prize of beating this, but it is rather daunting.

Secondly, I'm a little vulnerable at moment.  With the dental stuff still so "fresh" and trying to recover from that, I actually felt sick of being poked and prodded by all these people I'd never met.  Again, understand they're only doing their jobs, but wonder if they know what the others are actually doing and when.  Could be interesting if I get two of them trying to do stuff at the same time.

This leads to the third thing.  This is all happening very fast.  It was only a week yesterday I had my follow-up with Mr Morrissey, it is a week tomorrow I saw Mr Hamilton for the first time, had my teeth extracted last Friday, have an all-dayer on Wednesday and this Friday will have the peg inserted.  Seems they're moving heaven and earth to get my treatments started, but I'm sort of caught in the eye of the storm.

Also experienced my first bout of what I'll call self-pity.  Realisation set in that despite those around me supporting me as much as I'll let them, I'm to an extent alone in dealing with this.  There have been times when just being able to turn to someone for a cuddle and words of support would have made me feel better and get me back on track, but that gap is part and parcel of being on my own right now.  Talking to Faye last night helped put some of that in perspective though.  If I wasn't "sick" right now, would be out doing things and not dwelling on the "loneliness" side of things - a fair call indeed.  Honestly, it is rather scary at times and admit for a time yesterday my PMA just didn't exist.

It's back now though, so bring it on guys and girls.

Back to the speed thing.  I'm beginning to think that those who complain about the speed of the health system aren't suffering potentially terminal diseases.  I don't believe I'm receiving special treatment, so can only assume if there is a wait it is because they can bump them back a bit so they can attend to those that can't wait.

Any way, enough of that, time to get to work and deal to some of the normal stuff today.

Monday, May 17, 2010

What's Up Doc

Well, It's Monday and things continue to settle down, sort of.

Yesterday, breakfast consisted of porridge, but by afternoon I was hanging out for something with texture / substance.  Mr Patel's cheat sheet said I should be able to start to return to normal diet, so time to push that idea.

Trip to the supermarket sees me come back with some soft bread rolls, tins of soup and some chocolate fish (surely marshmallow will be easy to digest).

Well, I discovered the new "skill" of chewing with my front teeth only and must have looked like a rabbit.  The chockie fish wasn't all that easy as it turned out, but I persevered.  Soup with bread rolls went down a treat for dinner.

Still struggling with the pill timing, so hopefully by trying to resume eating in earnest today, this will be back on track by end of the day.

Slept in normal position last night and awoke to what is becoming the norm of a stiff jaw.  Haven't taken any more painkillers and in reality jaw is now at stage of a "normal" toothache, so can save them for later.

Swelling actually not as bad today as I thought it would be and tenderness also starting to fade, although the right side of mouth is still worse than the left.

Have checked to see what Wednesday appointment is about and seems it is all about kidney function tests as precursor to the chemotherapy.  I'll have some "pictures" taken first thing, then a cannula will be inserted to allow for hourly blood sampling.  Seems a book might indeed be order of the day.

Saturday, May 15, 2010

Once More with Feeling

Yippee! I have control of my mouth back.

Found it very hard to actually get to sleep last night.  Couldn’t find right position (sleeping pretty much upright just wasn’t natural), was frustrated still couldn’t feel bottom lip and saliva seemed to be working overtime – or was it?  Don’t think my efforts were helped by the snoozes I’d had earlier in the day thanks to the anaesthetic, which meant I was more sore than tired.  My two minders – Mindy & Dexter (the cats) took up post on either side of me for the whole night.  They would normally come and go, but as far as I’m aware (being quite a light sleeper) they stood guard all night.

Speaking of the little darlings, I’ve found their company to be quite therapeutic throughout this thing to date.  Can’t really find the right words to explain that statement, but think it has something to do with the feeling that they know when something isn’t right and just come and cuddle up.  All they want in return is to be fed on time.

When I woke up at around 5:30, I had feeling back, but mouth and lips were really dry – what happened to that saliva?  Downside was the throbbing that replaced the lack of feeling.  Tried to get back to sleep, but dozed until I decided might as well lie in bed and catch up on TV that I’d been “saving” over the last couple of weeks for these sorts of moments.

I’m quite surprised at how tolerable the pain has been all day though.  Popped my antibiotic when I got up, but didn’t take any painkillers.  Mr Patel rang to check up on me (nice touch) and once we’d discussed how I was feeling, told me to start popping Nurofen for the inflammation (his prescriptions were originally for Voltaren, but that screws with my stomach) – yep, the swelling is a doozy today.  He also said that they really pump in the drugs the day of the op so that by the time they wear off, the after-pain has started to subside a bit anyway.  Good strategy and it seems to have worked.  Still haven’t felt the need to pop the pain pills.  Seems tomorrow will be the worst day for the swelling.  Really?  I feel like my face is slab-sided today i.e. no curve at the bottom for the jaw.  Would hope it doesn’t get any worse.

Have had some scrambled eggs for sustenance today and according to Mr Patel’s cheat sheet, I should be able to return to a more normal diet tomorrow.  As I’m finding it hard to remember to take pills I’m meant to take at mealtimes that I’m not actually having, this should help in a number of ways.

Some interesting factlets from the cheat sheet:
“Avoid sucking at the wound or interfering with it in any way”.  I have no desire to suck at it, but it is interfering with me – every so often my tongue hits what must be stitches that weren’t cut short enough.
“After all meals use a toothbrush and toothpaste and clean towards the back of the mouth as thoroughly as possible”.  So, in light of previous instruction, clean back until the toothbrush falls of your jaw which is where the wounds are.  Firstly, after every meal is a hassle, but I'll play the game.  Secondly, getting sufficient movement in the jaw to get the toothbrush in today is not exactly a pain-free pleasant activity.  And for some reason, the rest of the teeth are rather sensitive at the moment too.

Not only do I have to clean my teeth a minimum of three times daily (once I can actually eat that often), but after each meal I also need to rinse with Savacol mouthwash and for good measure do it one more time just before bed.  This routine is to last a week.  Great, more stuff to cart around with me.  By the way, the Savacol isn’t actually too bad a drop once you get used to it.

One thing off the agenda for a few days is shaving – not even going to try and put a razor next to a very sensitive jaw.

Friday, May 14, 2010

The Treatment Train Gathers Pace

Well, home now and must say today has been useful in a number of ways.

Firstly, I'm now minus five teeth - all sitting here in a jar.  That means we're past hurdle one towards starting the "real" treatment.  Trying to figure out if my crown will become a "trophy" of sorts - this is the price I paid to beat this thing.

Secondly, and quite importantly, I have had somewhat of a dummy run for how painful my jaw can/will feel.  To say it hurts like hell is an understatement.  One "side effect" is they also put in a whole heap of local and I quite honestly can't feel  my bottom lip or chin.  Drinking is via a straw - only way I can find the gap between my teeth!

They gave me an ice-block at the hospital, but had to cut it up so I could eat it with a spoon.

Thirdly, I've been having a saliva overload since I woke up and of course this has heightened my awareness that this natural mechanism won't be available to me in a few months.  Maybe need to carry some straws with me?

Jury is still out on my pain thresh-hold, but as it is currently nearly impossible to even contemplate taking either antibiotic or painkillers, will see how next couple of hours pan out.

Big ups to a number of people today.  Firstly, the guys at Tower moved heaven and earth to get the pre-approval through for today.  Secondly, thanks to Chris and Ruth for their efforts in transporting and minding me once I got home.

Biggest thanks go to the hitherto unsung heroes and I'm sure I'll praise them all again before I'm declared the winner of this bout.  To date I've experienced nothing but 110% professionalism, understanding and support from everyone at both Hutt and Bowen Hospitals.  While the speed of some of this is quite daunting, I'm being talked to, not at, and the whole process is going quite seamlessly.  People knock our health system, but from where I stand, facing the opponent I do, I don't think I could ask for better standards of care.  A massive thank you to you all.

On a final note (starting to get a tad weary again), I got home to a voicemail from the nuclear medicine team at Wellington Hospital letting me know I have an appointment on Wednesday at 9am for a GSR (?) workup.  By the way, this will take five hours (yep, 5), so consider your day written off.  Will ring them on Monday to confirm and ascertain what we're dong, but it is possible this is about the face mask as Chris said it was a long exercise when Val had to have her one done.

Already thinking about what I can do with the mask once this is all over.

So, next week is shaping up for an all-dayer on Wednesday and the following week is my follow-up with Mr Patel to make sure my teeth/gums/jaw are healing properly.

Another Friday, Another Procedure

Pre-approval to have wisdom teeth out today has come through (great effort from everybody concerned, thanks) so it's off to Bowen hospital shortly.  Another nice little sleep for me today.  Given the bill is somewhere around $4.5k, I'm hoping to make the most of facilities at Bowen.

Need to be there by 8:30 and expect to go in around 10:30.

Seems I might lose a 5th tooth - one that has a crown - so might have a $1,000 "trophy" after today.

Not sure how I'm going to feel after this, so may not update the blog until tomorrow.

This having things done on a Friday is becoming almost predicatable.  That said, would far rather it was done today so I've got the weekend to recover a bit.