Monday, July 26, 2010

And More Days Pass With No Blog Updates

When all this started, I had firm ideas what was going to be involved and how it would all affect me.
As you will have seen along the way, I've had to accept reality, park my bravado and to a large extent just come along for the ride.

The last couple of weeks have indeed been a real eye opener, and I don't think I have been successful in getting across just how distressing this time has been.

I said I'd take time to gather my thoughts, get my brain in order and have another go at getting my message across.  As you'll have noticed, this hasn't happened yet and I don't honestly know how long it is going to take me to get there.  With every passing day, many more things happen and I'm sure I'll eventually miss some stuff first time through, but I am determined to keep this as accurate a record as it can be.

As a heads up, the weekend had some scary moments and today I had to come face to face with one of my fellow combatants being told they will lose the fight - all within a paltry 7 days of the initial diagnosis.  That is very grounding and a reason to count your own blessings.  Also interesting to see how he is handling the news.  This guy was my room-mate for only one day and we developed an instant rapport - during our many middle of the night waking moments, we actually had some bloody good chats about our situations and I admired his attitude and outlook.

On the positive side, today's Chemo and RT marked the start of week 5 - so this week and two more to go - last treatment date of Friday 13th August is fast approaching.


Wednesday, July 21, 2010

Have a Snooze And Wake Up Five Days Later - Or That's How I Feel

My last posting was Friday and despite the title for this post, a lot has happened in that time.

But, by the same token, I concede the last series of posts were somewhat disjointed and "living proof" of what sort of stuff has been going through my head over the last week or so.

As I sit here now getting ready to bring the story up to date, I am having another wave of "vagueness" sweeping over me.  This is therefore not the right time to record some of the toughest times to date.

In fairness to all - me included - I'm going to "park" this exercise until I've been home for a day or so - that does mean you should have some weekend reading to deal with.

Bye for now - off for another nap.  Didn't know napping made you feel so tired.


Friday, July 16, 2010

Thickened Water is the Drink For Me

Sorry if part 2 seemed a bit disjointed.  I was literally struggling with nodding off mid-keystroke.
Thursday had started off quite well - seemed to have some of the old bounce back, but come early afternoon, it was like a switch had been turned off.

Anyway, can't sleep right now, so making best of the awake time.  Think we were up to being admitted to the ward on Tuesday.

Memory is a bit hazy, but know I had some blood tests, had a visit or two from Linda the dietitian as well a Ruth N and Kate (speech therapy).  Everyone is aiming/pushing to get me swallowing ASAP, and at the very least before I go home.

Up until now, the morphine, etc has been administered via Jake, but that has all changed.  Morphine is via a small infusion pump that will now go with me everywhere.  Cannula for that is placed between layers of skin, so virtually no pain having it inserted.  The paracetamol is administered via a cannula in my right arm -don't like this one as it hurts and they've had to move it once already.  Jake is there for the overnight feeding now - something else that will kick in when I'm sent home and yet another infusion pump to be lugged around.

The morphine pump will require new syringe to be inserted into pump each day by district nurses, so that means I need to be home each day at that specific time.  The feed and fortisip (feed once daily over 10 hour period, fortisip 4 times a day) are self administering and just require a script.  Paracetamol also self administering and will be by script as well.

So, to go to loo now requires unplugging 2 x infusion pumps (did I forget to tell you about the saline drip they've had running continuously?), plus untangle the morphine one, and we're ready to rock.  Negotiating the drip stand around the bed isn't always easy, but the anti-constipation drug they have me on doesn't like being ignored, so you learn how to do things in a hurry.

Where are we up to now?  That's pretty much got used up to date re treatment protocols, but there are a few peripherals not yet touched on.

Swallowing - still a real issue, as is lack of solid food intake.  Reality is knew the tube would come in to play for main meal substitutions, just didn't think it would be so soon, but these things happen.  That brings us back to swallow.  Tried some soft drinks over last few days, and they make it as far as an initial mouthful before I start chronic coughing.  Water honestly meets same reaction most of the time, so the coughing is making throat really sore for little relief.  You wouldn't believe the volume of phlegm I'm consistently coughing up.

One possibility is a barium type drinking x-ray whereby they can check for leakage.  It is possible that some of the fluid is leaking past my throat and into my lungs for example.  Appointment delays are up to a couple of weeks and I'd rather know what is going on before being released.  Kate came back with an alternative - thickened water.  Don't laugh, because this shite seems to work.  While the taste isn't pleasant, I've been sipping away on this since yesterday afternoon with no coughing after effects.  Have agreed to try it, but have also requested it be served cold.  Come in various degrees of thick - mine is the mildly thick one.

Release Date - the moving target it seems,  A couple of days now seems to encompass the whole weekend and given the raft of issues we're trying to get under control, this is still the right place to be I'm sure.  Would be nice to get a couple of things ticked off, but it all seems inter-related.

OK, exhaustion kicking in again.  Time for some sleep - would be nice to get more than 1 hour on the trot, but I'll take what I can get.

Sleep Well you all.

Thursday, July 15, 2010

Welcome to Emergency

The last bit of food I ate was on Saturday late morning and was ice-cream designed to soothe the throat.  It was now Monday morning and I'm sitting with Ruth S awaiting my RT session.

Our visit of the previous evening has hit the notes and Ruth N and Kate want to talk to me before the session.  At least this time I know I followed protocol.

I think it is fair to say that my sudden deterioration caught the hospital of guard, as it had done me, and they were rather concerned.

The next couple of hours was all about stabilising the pain control protocols and trying to get it to a stage where I could actually swallow liquids again.

End result of all of this was increased volume of morphine every 2 hours and we collectively decided I'd go home and see how it worked overnight.  The options were clear and simple - it either works, or we go back and get admitted during the night.

We were very thorough Monday night.  Ruth S stayed and we both got up at the 2 hourly intervals to assess progress and administer the next round, etc.  It became clear by the 11:45pm session, that it wasn't giving me the relief and we agreed in writing (I was not talking at all by this stage as it hurt too much) that if the 1:50 am session confirmed lack of relief, we'd pack up and get our butts into Wgtn A&E.  Bits of me wanted to just get admitted so we could get me relief, other bits of me wanted the relief to kick in and keep me out of the hospital.

So, after turning Jake into a drug dependent peg one more time, I start packing for a couple of days in the ward.  What will I need?  choices, choices.  Stick with the basics - including the laptop.

We arrived at just before 4am and after going through pretty much the same routines already gone through, we're shown through to our little cubicle to wait for a bed to be sorted on the ward.  Then it seems the handover can't be done until after the ward staff start at 8am, so we're "managed" until then.  Morphine is administered (using our stock), paracetemol likewise and I continue to try to drink water, but duly bring most of it straight back up via the coughing.

Transfer to the ward is smooth and painless, but then starts their battery of tests, etc.

Coming in Part 3 - Thickened Water is the Drink For Me

What Has Happened Since Last Thursday?

I normally try and follow the same routine on the weekends as far as the blog goes.
Update Thursday night, then update again Sunday night.  That way I'm all caught up before the new working week starts and any strange goings on get picked up along the way.

You'll also be aware if you follow this evolving masterpiece, that weekends tend to go a bit haywire for no apparent reason - or nothing apparent on Friday's anyway.

This last weekend started no differently than the others.  Throat had a bit of a niggle, but not really any worse than a normal head cold.  Two weeks of treatment down and had caught up with Tatiana on Friday to sort out some life insurance things.

As in the past, Saturday morning was to be the litmus test of sorts.  Woke up to the mother of all dry mouths. Tried drinking water, but that too was proving to be a challenge.  Ended up taking me a couple of hours just to get the throat working well enough to allow me to swallow some panadol.  Continued efforts to drink water had minimal success and by the time Sharon & Phil arrived to do the section, speaking was becoming somewhat of a challenge all to itself.

I read all the bits & pieces of literature I've received along the way, and nothing specifically dealt with this.  Sure, there is mention of the issues that normally arrive week 4-5, but this is only week 2, and things had been fine Friday.

Decided to see how things settle on Saturday and would go to hospital on Sunday if there was no marked improvement.

Cutting to the chase, there wasn't any improvement - in fact you'd probably argue it had gotten worse.  Late start (feeling like rubbish - broken sleep, etc) and Ruth  S and I are off on our hospital odyssey.

Arrived 3pm "ish", they had a quick look at me, rang the on-call oncologist and explained my situation, then sent me to the waiting room to...wait.
Seems there is only 1 oncology on-call at the weekend and the ward was full, so they'd come and see me when they could.  Ruth S and I pondered what would have happened if I was running a temp (no worry - had taken it before leaving) and we settled in for the wait.

I will at this time just drop in the little gem that this is being written from memory on Thursday.  Started around 9am, but have struggled to make real progress due to medical breaks and the fact I keep falling asleep. 

At some stage they called us in and took us round into ED proper - figured we might as well wait in some degree of comfort.  We worked it out later that we sat there for 2 hours before so much as a nurse came and talked to us.  Once Ruth S made this point, we got pretty good service, except for the ED doctor who seems to make an effort to avoid us.

End result - we left just after 11pm armed with scripts for morphine elixir and paracetemol elixir.  Seems can also give the difflam spray a go. Morphine to be taken every 2 hours, paracetemol every 4-6.  Don't see how this is going to help with already screwed sleep patterns.

We decided Ruth would drive me to the RT appointment on Monday and we'd stay home for the day to try and catch up on sleep, etc.

Best laid plans and all that.... to be continued 

Thursday, July 8, 2010

It Is The Little Things That Catch Me Out

Well, it is now Thursday and I'm adjusting to the lack of taste buds as best I can.
I still have some taste where cold foods are concerned and Ruth N has said if ice cream works for me, go for it.  Ironic really.  If my tonsils had been removed when I was younger, I'd also have been allowed to eat ice cream then.  Now, because of I've still got my tonsils, I have TC and the radiotherapy has nuked my taste buds, but I can still taste ice cream.

After Monday's treatment I tried to see Ruth N, but she was busy, so didn't get to have a conversation with her re recent developments until then.  Not really much to say about that discussion - everybody responds differently to the RT, I just lost my taste buds early.  Shit happens.  Some good tips though.  I'm now back on one of the anti-nausea pills "full time".  Taken 1/2 hour before food, it settles the stomach and reduces that "rejection" (which in reality is nausea) sensation.  Also, by eating little and often, one can almost trick the system.  Can attest that both work.

Had my baseline hearing test on Monday afternoon - seems my upper registers are screwed, but rest are good.  An age thing as opposed to result of chemo.  Advantage is I would be able to hear any really high pitched moaning :)

Monday night's dinner was potato & bacon soup.  Smelt great, think I now know what dirty dishwater tastes like though.  Real effort to try and get 1/2 of it down.

Had chinese for tea on Tuesday night and for the first time in many days, I ate what was almost a normal serving size.  If in doubt - medicate.  Now, chicken fried rice can of course be quite bland anyway - you never know how much taste the rice will have and the chicken is pretty inoffensive as well.  That said, despite the lack of taste sensations, my system didn't throw a hissy fit.  Victory for the little guys.

Wednesday, I took some filled rolls to work to munch on during the day - the roast beef and the pork one were fine, but the shredded chicken was so dry I just couldn't eat them.  So come tea time, I went for something light - b&e mini pies made for me by Ana.  About the size of a muffin, these are truly nice and convenient, but must say without taste buds they do lose a bit.  Again, no issues getting them down though.

It is probably about here I need to set the scene.  The Weather in Wellington this week has been a tad variable and I have struggled to get the balance right between being dressed for the rain as opposed to the cold.  Also, I think with getting tired around 4pm each day, my body temperature spikes a bit as well.  So, by Wednesday afternoon, I had a little sniffle back - nothing major, just annoying.

Last night turned out to be yet another night from hell.  I got night sweats, was up and down to the loo more than normal, restless sleep, and the dry mouth had me drinking water on numerous occasions as well - normally it doesn't unduly worry me overnight.

Woke up this morning and was feeling pretty stuffed.  Disturbed sleep is never a good thing and I just couldn't really work up the energy to get up.  Eventually, doing my best zombie impression, I got through the morning routine and went off to pick Moira up.  She was coming to hospital with me today to meet Hugo and see an RT session.  Still drinking lots of water to counter the dry mouth/throat.

The RT nurses asked how I was and in passing I mentioned the rough night sleep.  Well, I wasn't ready for what happened after I came out after the treatment.  Today was my day to meet Kate the speech therapist (thanks for the advanced warning guys, good thing I had the day off), but she was stuck in traffic, so we got to wait.  Then, it seems she had actually arrived, so back we went to one of the consultation rooms.  Ruth N came in with Kate, then I got taken to task.

"What's this about the night sweats?  Did you take your temperature?"  Shit, hadn't even given that any thought.  I quite simply didn't think the sweats could be fever related.  I had cocked up.  Seems at this time after chemo, immune system is most susceptible to infection. Oops, I'm now the naughty school boy being quite rightly chastised for misbehaving.  In the coming 1/2 hour I have my temperature taken - elevated at 37.4, some bloods taken and sent away for urgent results to see what the blood  cell levels look like and my blood pressure checked.  In between Ruth N doing all this, Kate is talking to me and having me do various facial exercises to set a baseline for future reference.  I also had to drink some water while she felt my neck to see if the swallow was working properly.  We're told we can go get some breakfast, but can't go home until the blood results come through.

Dutifully back in reception waiting, get my temp taken again - 37.1 this time and we wait. Tests eventually come back and they're not upset, but Ruth N still wants to have a chat with the Doctor.  Now I need to give a urine sample and sputum sample if possible.  Urine no issue - drunk enough water today,  but the sputum just wasn't a happening thing, so I've got a sample jar at home in case I deliver something that isn't clear coloured.  (Sorry for the level of specifics, but they need to be recorded).

So, got home around lunch time.  What a long morning and as I was still feeling run-down, blobbing in front of the TV seemed appropriate.  OK, so the morning's activities and screwed with the eating little and often, and I didn't take my anti-nausea pill before lunch, so it wasn't a particularly pleasant event.

Ruth S called on the phone in the afternoon, so filled her in and get feeling she's not happy with me either over this debacle.

Curry for dinner - forgot pill again, taste disaster and the nauseous stomach resulted.  Took a pill and eventually got something down and the stomach is now happy.  Mental note, trying to eat something as a second sitting that you've already had a reaction to isn't a good idea.

It Is The Little Things That Catch Me Out - and The Devil Is In The Detail.  I should have thought about the implications of last night and followed what I'd been told to do in such cases.  I should have been taking the pills as part of my daily routine and eating today wouldn't have been such an effort.  Today has really driven home that I'm now totally controlled by my health and can't afford to cut corners or just roll with the situation.  There is too much at stake and the consequences of being blase are potentially fatal.

No more cutting corners, no more "that can wait until tomorrow", I need to become a machine as far as all of this goes.

As reality checks go, today has been a goodie.

FYI, temp currently 36.9 and I've made decision not to go to work tomorrow as weather is going to be crap and don't see point in risking aggravating my health.

Thanks Moiz for your support & assistance today.

Sunday, July 4, 2010

Week One - What The Hell Was That?

OK, straight on to the doom and gloom.  I really need to get this out of my head - Week One has been a bastard of a week.  

While it is great to take the positive approach - 1 down, 6 to go - in reality this first week was not meant to deliver the trials and tribulations it has done.  That was meant to be weeks away.

On the plus side of things, the chemo didn't seem to knock me around too much, but that was more than countered by the effects of the anti-nausea drug cocktail.

And Thursday night delivered it's first definitive chemo side effect - the ringing in my ears has arrived.  It isn't a constant ringing, but man is it annoying.  At times it is just like a gentle wind in the distance on a nice summers day - you know, when you're walking along the road and a gentle breeze comes up and you can "feel" it in your ears.  At other times (like right now), it is a full on ringing in my ears.  Volume changes as well - sometimes it is like a low level electrical white noise, others, it is rather loud .  I'll try and think about what it sounds like at those times, but it it hard to describe.  End result, is my whole hearing is now out of whack.  It is like I'm wearing earmuffs all the time and the level of ringing is part of the filtering process.

Mentioned the ringing to nursie Ruth [I think for ease going forward, sister Ruth will be Ruth S and nursie Ruth will be Ruth N] on Friday and there is nothing they can do about it, but she'll make sure there is a note in my file so they take that into account for chemo cycle 2.  I'll also need to make doctor aware.  On the plus side, got a call Friday afternoon to have my hearing test on Monday afternoon.  At least we'll now have a benchmark to measure against before the next chemo cycle.

Friday, I withered and was glad to make it home, but getting home was just the start of what would be another weekend of TC related "fun".  As previously discussed, the drug cocktail had done a great job of screwing sleep patterns, etc and I just needed a lie down to try and recover.  I'd had some pizza (first in best part of 3 months) at work before coming home, so wasn't really into having anything substantial to eat Friday night, but that didn't stop my system having yet another hissy fit.

My whole body just felt drained - even lower energy levels than normal - and I ended up falling asleep on the couch within half an hour of getting home (as an aside, couch really comfortable, only problem was sharing it with the cats).  Awoke around 10:15 and didn't even have the energy to do my normal pre-bed medical routines (sorry Jake, I'll make it up to you).

So, the drug cocktail is starting to work it's way out of my system, but has being replaced with ringing in the ears - doesn't sound like a fair swap to me.

As could have been expected, the snooze on the couch meant I was awake early Saturday - 3:22 to be precise.  After a quick loo stop (damn fluid requirements), I also blew my nose and headed back to bed.  Decided to turn on TV this time, and just as was about to get into bed, felt my nose running.  Well, it turns out it was actually a full on blood nose that would occupy me for the next 30-40 minutes or so.  I very rarely suffer from bleeding noses, and automatically passed it off as another unwanted drug cocktail side effect (seems the dexamethasone makes you bleed easily - or is this just coincidence I had a bleeding nose this week?).

At this stage, also realised that the trips to the loo during the night saw me getting out of a warm bed, walking to the loo through a not-too-warm hallway, and then going back to a warm bed.  Not an ideal situation for avoiding coughs and colds - will buy an oil heater or two to keep chill off my room and the hallway.

Back to sleep and finally surfaced around 7:30am.  Still feeling washed out - not helped by the unwanted interruptions during the night - and my mouth was feeling like hell.  

Now, this was not your normal dry mouth type feeling, it just felt weird.  Despite a clean with my high fluoride toothpaste, it still didn't feel that flash.  Had to go and have my haircut and then pick up Bax & Pat from the airport, so decided to worry about it later - was probably just legacy from feeling run down, etc.

After the haircut, as I was heading into town, I decided to have a BK wrap for breakfast - it tasted awful - really bland - and I threw most of it away.  Breakfast take 2 - a bacon & egg mc'muffin - still tasted a bit off, but not as bad as the BK.

By this stage, some lights should have been coming on in my head, but they weren't.  A sausage at Mitre 10 that afternoon that tasted uncooked, followed by a roast pork dinner last night where I couldn't distinguish the tastes sealed it - my taste buds have already been nuked.  I was bloody sure this wasn't meant to happen in week 1 - week 4 was meant to be the nasty time of the treatment.  Bloody Hell!!

Today has been a verification exercise - and somewhat of a day of "shit, where to from here".

The dilemma - your eyes see what you're about to eat, your brain says "this should taste like that" and when it goes in your mouth, it might as well be cardboard.  An example.  KFC chips - always coated and have a unique, pleasant taste.  By comparison, fish & chip shop chips are rather "bland".  Imagine then, biting into some hot KFC chips, eyes and brain are on the same page, but your mouth says they are cold fish & chip shop chips.  Used Ruth S as a taste tester and her system confirmed that the tastes were indeed what they should have been.

So, now if I eat chicken, pork, potato, pumpkin, kumara, crumpets, potato chips, biscuits, chocolate, it all tastes the same. If I drink water, coke, mountain dew, it all tastes the same.  At least this means the terrible mouthwash won't be such an issue.

The big issue here is the way my body is processing all of this.  Eyes and brain are doing their thing based on a lifetime of previous experiences.  Mouth says that this isn't what it is meant to taste like and is telling firstly my stomach that it should be careful as it doesn't know what it is and secondly my brain that it might be a good idea not to eat any more of that.  This screws royally with my need to eat and provide my body with the sustenance it requires.  A KFC burger took over 15 minutes to force down - and believe me, it was a case of force as my system was fighting all the way.

Looks like another talk with Ruth N tomorrow, but I honestly don't know how the hell I'm going to fool my system for the next 6 weeks, let alone how much longer after the treatment finishes before some degree of taste buds return.

I have no desire to be fed primarily through Jake from such an early stage, so suppose am just going to have to keep working at it.

While we're on joyous subjects - would have expected the saliva glands to have taken a hit before the taste buds did, but didn't think there was any noticeable difference.  That said, and in light of all the crap above, it would explain why even now my throat is feeling dry. Suppose that is the problem when you don't know what things are meant to feel like, and you've had other issues masking what is going on.

For some positive news to end on - I am feeling a lot better today.  Have some energy back and am thinking with pretty much a clear head.  All back into the health routines and no issues with Jake.  Heaters in my bedroom and hallway worked a treat last night and the little sniffles I had seem to be going away.  And, no repeat blood noses.

5 down, 30 to go.

Thursday, July 1, 2010

A Big Win Today

Before I get to that, a recap of the last couple of days.

A side effect of one of the anti-nausea drugs is insomnia, so while I didn't feel sick Monday 
night, I was wide awake at 4:22 am.  Hmmm.
Overall, felt pretty good on Tuesday, went to work as normal, but still really tired.  Queue another side effect of the anti-nausea cocktail - feeling tired, dry mouth.  Great.  Thank goodness this is only for three days and I'm also happy I'm on three weekly chemo (instead of weekly) or else I'd be zonked for 7 weeks.

I had a call from the district nurses Monday night to see how I was (voice mail as they rang before I got home) and Wendie rang to see how I was on Tuesday.  She was really surprised I was at work and sounding so well.

Tuesday RT session went well, but I was pretty well knackered anyway, so was just along for the ride so to speak.  Despite them saying the amount of time in Hugo will be less once we start treatment, it hasn't reduced yet.

Tuesday night was a case of stay awake as long as possible, but sleep was still restless (50% victory/improvement I suppose).  But, and there had to be one, had somewhat of an unsettled stomach when I woke up.  so, I'm still tired, no nausea, but stomach feeling tad dodgy.  By time I got to work, I had what would best be described as a bad case of acid reflux that just wouldn't go away.  I persevered until it was time for the RT, but by then I was feeling decidedly dodgy/unwell.

Again, RT went well (support crew for the day was Nick & Kylie) and when I mentioned my stomach issue, they had me wait to see the registrar.  Seems the anti-nausea steroid (there is 4 pills in total I take daily) unsettles the stomach  - akin to taking voltaren.  Great, so now I've got losec to take to settle the reflux.  Had to go home early from work, just couldn't cope (thanks to Moira for being chauffeur) and as the losec take some time to kick in, bought some milanta pills to kick start it all.

When I got home, quickly found that sitting up was worse than lying down, but either way, didn't really get any substantive relief before going to bed.

Another restless night, but only small residual acid reflux this morning.  Last day of the anti-nausea cocktail today - yippee, so everything will hopefully settle down over the weekend.

In preparation for the next round of chemo, me thinks I'll pop losec for a day or 2 in advance to give the stomach a chance to prepare.

It is now Thursday and back to the big win - I had my RT at 8:30 this morning WITHOUT the aid of the chill pill! Yippee, yahoo (imagine cartwheel being performed here).

I'd set myself the goal of trying to ween off the chill pills by the end of this week, but wasn't given still feeling a tad drained, thought would give it a go today and had no problem.  Ruth (nurse one) had "coached" me with some breathing exercises on Monday and I've kept that up.  Also, they will play you music during the treatment and that helps to not only pass the time, but also give you some time references (each track is approx 3 mins, so after 4 songs should be about done).

This is a big step for me.  While I was on the chill pills, it meant I always needed to have a driver to & from the hospital.  now, I can take myself and given the appointments are all at 8:30am (except for chemo days), this makes my day a lot easier to manage and gives me back independence.

Might have to have a celebratory beer tonight.

Have also decided the countdown should start at 35 - the number of treatments, so we're now officially at 31 to go.