Wednesday, November 30, 2011

The Good, The Bad and The Not So Ugly

The Good - OK, I'll concede/accept that the Thyroxine is indeed doing everything expected of it.

I'm enjoying my new-found "normal" body temperature (although most of my summer shirts are too big for me now - damn!), my weight is stable, energy levels doing fine and my water intake has stabilised somewhat.

With regards the energy levels, I finally got around to dusting off my push bike and going for a ride.  The outbound trip was hampered by lower than ideal tyre pressures, whereas the inbound leg showed how correctly inflated tyres dramatically reduce resistance.  I'd forgotten how much different the workout you get from riding a bike is to walking.  I was absolutely knackered after a 20 minute spin, whereas I'm more than comfortable walking for 90 minutes or longer.

I'll now take up the challenge (weather gods willing) to get out cycling more to build up that level of fitness.  Damn it, I really like these sorts of challenges now.

The Bad - I'm getting this vibration in my ears.  It happens with and without my hearing aids, and only in my left ear, so I'm pretty sure they aren't to blame.  I'll be just going about my day and then this vibration kicks in.  It's quite weird and lasts for a few seconds, then goes away.  There is no structure to when it happens, so will bring it up at next hearing appointment.  

Another issue is, by mistake, I used some moisturiser over the weekend that contained SPF, and I'm allergic to pretty much all sunscreens.  Net effect - I've got an annoying rash around my neck and have had to resort to Telfast to try and control the itch.  That will teach me for not reading the label properly first.

The Not So Ugly - I've had my hearing aids for nearly a week now and I think I'm adjusting to them fine.  I'm actually amazed that I don't feel self-conscious about them at all.  That is no doubt helped by how discreet they are, but thinking back I was never really bothered about Jake or the morphine pump either.  They were/are all part of the hand I've been dealt, so there is no point trying to hide them.

I have a follow-up appointment next week where the audiologist will tweak the aids.  At the moment they are on a "learner" setting, so next time they'll be adjusted to "normal" operating status.  At the moment, I think there is indeed some improvement in noisy environments, but not sufficient as yet to say it is worth all the money.  I've tried to compare sounds with them in, then quickly take them out to see if there is any change, and in quiet situations the difference isn't really noticeable, but as I said before, in loud situations there does seem to be benefit.  With them on, I can hold a conversation with someone close to me and not get lost with the background noise, but it is pretty much dependent on how soft the other person is speaking.

I am tempted to try and bring the appointment forward, but another week of getting used to them probably won't hurt

Tuesday, November 15, 2011

Music To My Ears

Well sort of.  Today was my appointment with the private hearing clinic and as a result I'm two weeks away from a pair of hearing aids and hopefully a degree of "restored" hearing.

This hearing test was slightly different to the others I've had in that after the "normal" bits (which produced results that were remarkably in line with the test done by Mr Morrissey), I was given a couple of dialogue recognition tests.

The problem with my hearing is at the high frequency (2kHz and above) and this causes issues where there is background noise that simply gets in the way of me being able to hear properly.   The first test was very interesting.  A male voice speaks a series of words and the volume changes along the way (getting softer).  I have to repeat back what I hear and, if need be, I'm to guess.  As the volume drops, so does my ability to hear/guess the words correctly.

It seems that my hearing loss means I have trouble with consonants and only hear parts of some words.  Hmmm.    On to test 2.  In this one a woman speaks sentences and I have to repeat what I hear.  The twist is each time there is more background noise - in the form of people talking.  After a couple of sentences, it is all just noise and I have no idea what "my" lady is saying.

The audiologist then moves on to what type of hearing aids he thinks will best help me.  There are low, mid and high ranges as far as prices goes and a surprising number of different types.  Given my hearing is only affected in the upper range, the full in ear type is discounted (this would effectively suppress my existing hearing and place all the work on the aids.  The behind the ear type (technically open-fit  canal receiver technology) is apparently most suitable, so based on my needs a model (and colour) have been selected.

I will have them for a 2-8 week trial period and at the end of it, assuming they do the job, I'll need to stump up the $6,000 odd for my hi-tech aids.
They are actually quite a technological marvel, and tiny.  They use wireless technology and effectively talk to each other.  You can program one to increase the volume and the other to decrease the volume, and it will then adjust both aids.  They also have blue-tooth technology, so if I was to buy the right accessories, they could be paired to my phone.  This would mean I could play my music directly via the hearing aids and they would also provide the speakers for answering the phone.  Me thinks one step at a time though - get used to them before trying to do all the extra stuff.

I'm actually looking forward to getting them and ticking off what is effectively the last of the major side effects of my treatment.

Wednesday, November 9, 2011

At Last - A Sting In The Tail

Throughout my experiences over the last 18 or so months, the system has worked bloody well for me without a doubt.

All the medical systems, etc have been spot on, I've been blessed with the support crew I've had around me and I'm now a better person for my journey.

Let's admit it, for all those dark times and experiences, the end result is I'm still alive and for me that is the best outcome.  Sure there are some residual side effects that can be a tad annoying, but in the overall scheme of things, when balanced against the alternative they are minor.

The pessimist in me was always waiting for something to deliver a "gotcha" moment, but it never happened.  Was I just lucky, or is this the norm?  There are sadly too many stories of the unlucky ones for me to even remotely consider buying into the argument it is the norm, so I was happy to accept it as my good fortune.

Today, however, the gotcha was delivered.

I've just got home from my follow-up appointment with Mr Morrissey as he tries to address my hearing issues.  I had another hearing test first, and the results are pretty much in line with the last one, which means things haven't gotten any worse.  Good start.  Then the fun begins.

Seems he still hasn't managed to get a copy of the tests done by Wellington Hospital, but did manage to find a note in my file that said the test was normal.  I told him the baseline test wasn't taken until after treatment had actually started, and the effects had already appeared by the time the test was done.  "We might have a problem then"  was not what I really wanted to hear.  Firstly, my hearing loss is not what he would expect in someone of my age, and it is highly likely that I would indeed benefit from hearing aids.  The issue is who will end up paying for them.

With the hospital having been tardy with doing the baseline test, there is no proof that my hearing was actually OK before the treatment started.  Couple that with a change in ACC policy and it seems the system has found a way to give me a not too gentle nudge.

ACC used to fund treatment related side effects, but it seems it was costing them buckets of money, so they changed the rules so that they now only pay for rare and abnormal post-treatment "ailments" (terminology might not be right, but you get the idea).  Suffering hearing loss from Cisplatin treatment is neither rare or abnormal, so I'm out on a limb now.  Without a pre-treatment test, we can't prove it is treatment related.

Sure, I have the option of just grinning and bearing it, but honestly, it does irritate me at times when I can't hear properly in certain situations/environments, and as such it holds me back, so if there is something that can overcome that, then bring it on.

Mr Morrissey has given me a referral to a hearing clinic and I'll now see where that takes me, but it seems if the decision is that hearing aids will benefit me, I could be facing 100% of the approx $6,000 bill.  Merry Christmas.  On the plus side, there will be a trial period where I can actually assess if they are beneficial, so it isn't as if the money gets spent and I might not get any benefit.

At this point, in my "previous life", I'd be pretty annoyed (note the careful restraint) that the system had screwed me over like this.  I've paid my taxes, etc, etc.  But quite honestly, I'm sitting here with a more philosophical outlook on it (and those that have known me for many years may will struggle to believe it).  

Given I'm still breathing, in reality this is a pretty small price to pay for the life I've now got and plan to enjoy for many years to come. If the hearing aids last say 5 years, that is only $100 per month and that is one hell of a small price to pay to still be breathing.  

Life is too precious to me to worry about the cost of something like this if it improves my quality of life.  I'll worry about the money when the time comes, just means the weekly lotto ticket takes on added meaning.

Monday, November 7, 2011

The Jury Is Still Out

It's now just over a week that I've been taking the thyroxine and I have indeed noticed some changes.  I'm just not sure they can all be attributed to the pills.

One thing that has been somewhat of an annoyance over a prolonged period of time has been the inability to regulate my body temperature properly.  I've felt the cold when those around me have resorted to t-shirts and my dependence on thermals to keep my body temp up has well and truly lost its appeal.  Sure, I understand my body has been through a lot and is still settling down, but enough already.  So, the fact that I have been thermal-free for a week now is indeed cause for celebration.

This is where the conflict starts you see, because I started the thyroxine at basically the same time that the spring temperatures also finally decided to step up a gear.

I am however going to give the kudos to the drugs.  When we've had warm spells before, it hasn't come close to enabling me to put the thermals away in the drawer.  This time is different.  Even with the slightly cooler days (like today where the wind knocked a few degrees off) I'm still comfortable sans-thermals.

Moving on to my metabolism / hunger.  Well, things seem to be changing there as well.  I do seem to have stopped snacking as much and after my meals, I'm not still feeling hungry and craving more food.  In fact, I'm now making the conscious effort to break that snacking cycle - it has become somewhat of a normality that I need to break the cycle of.

And rounding out the picture, my weight is also staying static - no weight losses / gains from the drugs.

That really only leaves the lack of stamina / energy to discuss.  Well, that might have just started to pick up as well.  I went for a quite demanding walk over the weekend - it was over an hour and 1/4 all up and at dusk as well (just to test the body temp thing out).  I came back feeling pretty good and ended up feeling warmer than when I left (what I'd consider a normal reaction) whereas in the past I'd have been rugged up like it was the middle of winter, and come back basically the same as when I'd left.  This was of course a lot longer walk than normal as well.

So, it would seem that the score is 4-0 to the pills over the low thyroid symptoms.  But, I'm still not prepared to totally buy into it yet.  It is still early days and I'm picking the weather changes due over the next couple of days will test my ability to continue with my new found "nakedness".

One thing I have noticed is I'm drinking more water  and the throat is definitely feeling drier more often.  This could be a weather related change, or it could be a side-effect of the pills.  Time will tell.  My vision issues as mentioned in the last post as a potential thyroid related condition have not corrected themselves yet either and that will remain under review.  And, my sleep patterns are a bit screwed up as well.  I'm waking up 20 minutes earlier than normal.  Going to bed later doesn't overcome the problem, so just something else to watch.

Don't get me wrong.  If things settle down nicely and the cost of that is taking a pill everyday for the rest of my life, I think that is a bloody good deal and fully subscribe to it. It's just that I don't want to raise my hopes on the strength of only one week.  The gang of seven said it would probably take a full 3 months dosage to turn things around, so as I'm only a week in, I'm happy to sit back and enjoy the ride.