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.

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.

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.

The Return Of Drugs To My Life

One would have to say this has been an interesting week.


My head cold finally seems to be getting under control, thanks to Otrivin nasal spray.  Things started to clear yesterday, but this morning has dawned with even more improvement.  Some residual sniffle will curtail weekend activities (keeping warm remains priority), but at least we're moving forward again.


Wednesday was Gang of Seven day and was to end up being a strange old day.  The Gang of 7 was the Gang of 4 to start with - a new oncology registrar I'd seen only once before, Paul the dietician, Shirley the speech therapist and one of the Dental team (who's name I keep forgetting, but he is a really nice guy).  Things were plodding along nicely, then another couple of people joined in and I have no idea who they were.  One was obviously a senior oncology guy - he took over - but doesn't exactly possess a good chair-side manner.


Anyhow, after the usual touchy feely thing with my neck, he decides he wants to put the scope down my nose to have a look at my throat/tonsil.  With the head cold, we agree the right nostril is the least congested, so they numb that up and run the scope down.  Despite having this procedure on a number of occasions so far, it doesn't make it any more pleasant.


The results were mixed - his view was screwed up by the build-up of gunk in my throat, so he ended up not that much ahead.  It was however interesting that he described that gunk as saliva - given the ongoing issues, maybe there is indeed some degree of recovery that I'm not really noticing or just taking for granted now.


So, the discussion moves on to the blood tests and thyroid results specifically.  Seems the last two tests have shown slightly low TSH levels and they want another set of bloods to see how it is now.  If results are still on the low side, they'll call me directly and I'll need to go onto thyroxine to try and stabilise it.


Here comes the technical bits.  The thyroid gland regulates the body's metabolism in conjunction with the pituitary gland.  Every cell in our body needs thyroid hormones to function correctly, so if the thyroid levels are out, things go wonky.  TSH = Thyroid Stimulating Hormone, and its job is to balance out the T3 (Triiodothyronine) and T4 (Thyroxine) levels in the blood stream.  With my TSH level being low, it means it can't produce enough to keep T3 & T4 in balance, thus by boosting the thyroxine, it can return to doing its normal level of duties.


Side effects of the low TSH level go a long way to explaining some of my recent symptoms (I know I've mentioned them before, but it seems appropriate to restate them here) - increased appetite, weight loss, fatigue, weakness, increased anxiety, sleeping difficulties, temperature regulation problems and eye/vision issues.  This last one has actually crept up on me over the last week or so and I had no idea why, but this does sort of fill in the picture now.


Before I move on, end result of Gang of 7 was another clean bill of health.  My weight has stabilised as far as they're concerned and they'll see my again in 3 months.


Thursday morning I got a phone call confirming the the TSH level is indeed still low and they'll mail out as prescription for Thyroxine directly to me - it arrived yesterday and I'm off to get it filled shortly.


So, it seems my pantry will once more contain drugs that I'll need to take on an ongoing basis.  Fortunately it is only one small tablet and I've already set up a daily reminder in my phone to ensure I take the thing each day.


I will also resume weighing myself every couple of days to make sure I don't start gaining weight as a result - not an outcome I'm prepared to go unchecked.


Next medical interlude is the hearing update on the 9th of November.

No Doubt Who Is In Charge

And it isn't me.  Despite all the progress over the last year, my body still likes to exert its authority from time to time.

Yes, I should know better, but as I've started to feel more "normal", the usual warning sniffles seemed to be less of an inconvenience, and more modest in impact.  Damn it, the body was obviously lulling me into a false sense of security.

Maybe I was getting a little cocky, but the weekend was actually quite full on and I was feeling pretty good.  Out for dinner on Friday night, trip to the butcher on Saturday, some gardening and housework to round out the day.  Good day, but that night there was an inkling of sniffles coming. On Sunday, the weather was pretty good, so I spent my first day without wearing my thermals and was pretty comfortable temperature wise - well, I thought I was.  The day was filled with cruising, shopping and some more gardening.  That night it was off to the club to watch the rugby final and I made sure I was warm all night (thermals back in the picture now, I'm not that stupid as to overlook the obvious temperature drop at the end of the day), even on the trip home .  But, come yesterday morning, the sniffles were really starting to take hold and despite a good night's sleep, I was starting to feel decidedly flat.  The day was pretty low key, no risks taken re body temperature, but still the sniffles marched on.

This morning, it's fair to say that the sniffles have become a minor head cold.  My nose is running, throat is a little hoarse and I'm certainly not on top of my game energy level wise.

So, it would seem I've pushed the envelope a tad with regards what my body can tolerate and I can't abandon my thermals just yet.  I certainly hope that time will come when the warmer weather finally takes over, but in the meantime, it looks like I'm going to have to be more conservative in my approach and take a bit more care.

It certainly hammers home that I'm still "special" in that my body still requires me to do things differently and the fact it is warm isn't a signal for me to follow others and dispense with the extra layer of warmth that my body obviously still needs.

Oh well, Gang of Seven tomorrow, so that should provide a distraction from feeling sorry for myself.

Acupuncture Might Just Work

In the past I've related my change of attitude towards needles.  From a healthy dislike, to "just get on with it", to weaning off the seemingly daily occurrence and back to a healthy dislike.

It is from this position that I started going into the initial acupuncture session on Wednesday afternoon.  After some initial chatting, it was top off and lie down on my stomach on the "table".  I must admit I didn't feel most of the needles going in and it was only when the therapist pressed on certain ones to ensure he had the right spot - and I could indeed feel them - that I really knew they were there.

The needles were inserted along my neck, shoulders, the tops of my feet and between the thumb and forefinger on each hand.

After 20 minutes or so, the needles came out and the therapist massaged my neck and shoulders quite rigorously.

At the start of the session, he had managed to find a very tender spot on my left shoulder, yet working the same area after the needles did not induce the same severe reaction.

I also thought the movement in my neck was a tad easier.  This acupuncture thing might just work.

It seems the therapist has had pretty good success with this type of treatment with other cancer survivors and it seems also with people suffering from stress.  He says it will take 3-4 sessions for things to really start to show long term improvements, so I'm happy to give it a go.

I'm not sure I fully grasped what he told me, but it goes something like this.  The body normally gets rid of toxins by converting them to CO2 and water - we therefore expel them by breathing and peeing.  In my case, because of the "events", my body hasn't managed to get rid of the toxins and they have been turned into lactic acid.  What we're now trying to do is break things down to let the body resume it's normal duties.

I saw Melissa for osteo on Thursday, and she felt there was some degree of increased movement.  Coupled with my own perception, that was indeed positive news.

So, in summary, it seems we might be on to a bit of a winner with the acupuncture and as I have another appointment this week, will have a better idea after that.

Good Old Fashioned Service

Sometimes thing happen that restore your faith in society.  We've all moaned about a decline in community standards, moral values, dedication to service et al that we've seen over the last few years and personally one of my gripes has been the way that doctors now only give you a 15 minute appointment and just seem to process you as a number, not a person.

In all fairness, that started to change when I got this little challenge handed to me last year.  I've said it before and only too happy to say it again - the service I received from the public health system has been second to none.  Apart from praising my GP, Tatiana, I've never really acknowledged how my appointments with her are almost a trip down memory lane.  There is no pressure on me to be in and out within 15 minutes and I feel I'm actually talking a my personal GP,as opposed to just another patient that they don't really know the history of.

This change was driven home even more on Sunday.  While at home and happily watching the Great Race that is Bathurst on the TV, the phone rang.  It was Tatiana with my blood test results.  When was the last time your doctor actually made that sort of effort on the weekend to contact you?  I've actually had to ring and chase test results in the past myself, so was really quite impressed when I got the call.

The results were all good.  As previously noted, I had tests for diabetes, cholesterol, prostate - these all came back clear - as well as my haemochromatosis and thyroid function.  It was these two that Tatiana wanted to talk about.

The previous haemo tests had my level pushing the 1,000 mark, which was getting very close to requiring intervention (I'd already greatly reduced my iron intake to try and keep it at bay).  The level now is down to 600, so no longer such a potential time bomb, even though it will still need to be monitored from time to time.

The thyroid function came back as being slightly elevated, but not to a stage that necessitates medical intervention right now.  They'll keep an eye on it though.  The slightly high level would apparently explain my body heat retention issues, so that's nice to know.

So there you are, a tale of good old fashioned service that just continues to add to my new found faith in the medical system.

Tomorrow sees a new direction in my efforts to overcome the muscle scarring around my neck.  Melissa (my osteo) has referred me for some acupuncture to see if that won't accelerate the blood flow and help to loosen things up.  Will let you know the outcome later in the week.

Peace Of Mind - At A Price

And when you look at it, the price wasn't too bad.

As I mentioned last time, I've had a few niggling concerns over the last few weeks with regards some changes I've noticed.  On Wednesday I got to see my GP, Tatiana, to discuss them all, and here is the results of that appointment.

I went in armed with a list of my concerns (didn't want to forget any) and after telling each one to Tatiana, the first comment she made was "the cancer is gone and your body is still adjusting to everything it has been through".  To be fair, that set the tone for what was to come, and it was great to hear her say the cancer was gone.

Weight Loss:
So, we know my body is still adjusting to things and unless it continues to drop, it's nothing to get too concerned about.

Increased Appetite:
Obviously my metabolism has also taken somewhat of a hit and has adjusted as well.  Again, nothing to worry about, in fact it's really a good sign as it means my body is seeking more nutrition and is therefore returning to a new normality.

Combined, these two are quite interesting - I'm eating more, but still losing weight.  We also discussed what my ideal weight should be, and while Tatiana says she would be happy if I was carrying an extra 5 kg, she accepted my current weight was perfectly OK as well.

Unable to retain body heat:
Reality is because of all the weight lost, along the way I've also lost fat lipids, so no longer have the previous "mass" to retain body heat like I used to.  Looks like my thermals and me will continue being buddies for a while yet.

Energy Levels:
Again, give the body time to recover.  Don't do any more exercise than I'm comfortable with and just build it up over time.

Itchy Skin:
Seems just as my throat now gets dry, my skin in certain parts of my body (forearms & legs) have also been affected.  There doesn't appear to be any medical reasons other than this for the itchy skin.  Solution is to moisturise every day instead on just in response to the itchiness.  Great, another addition to my daily morning routine.

Immune System Recovery:
Normal for this to take 1-2 years, so I'm effectively half way there.

Thyroid Levels:
An interesting one this.  While it is indeed possible the weight, appetite and itchy skin issues are a result of a change in thyroid function, Tatiana feels it isn't the cause.  Interestingly enough, the Gang of Seven haven't been passing on the results of my blood tests to Tatiana, so I went and had a comprehensive set of blood tests for thyroid, diabetes, cholesterol  prostate (why not seeing as I'm there), hemochromatosis (as haven't looked at that since this journey began) to give Tatiana some updated base levels.  We'll see what comes back in due course.


So there you are.  My increased awareness of changes in my body had raised some issue, and thankfully all of them fall into the "normal" basket fortunately.


The price of this peace of mind? - a modest $41.


And one closing piece of news.  As part of Tatiana's consultation she weighed me - and my total weight loss now comes in as 29kg. While beating the cancer is obviously the single greatest positive to come out of my journey, this weight loss has to rate as #2. It is indeed part of the 2nd chance I've been given and I have no desire to return to all those bad habits.

What Gives

Normally when I sit down to write a post, I look back at the last one to see if there is anything to update.  It is quite interesting to just see how things have changed between posts.  This time, I'm just going to wing it.

Over recent weeks I've noticed a potentially alarming change in my eating habits.  For many months now I've been eating my 3 meals a day and have felt satisfied after each one.  Of late, I'm still feeling hungry after my meals and looking for snacks. So, why the change? I'm not doing any additional exercise that would justify the increased appetite, so why am I still hungry?

Hot on the heels of this increase in appetite, I've noticed my jeans seem a little looser than normal.  So after a quick trip to the bathroom scales, it seems my weight has dropped another 1-2 kg.  I've mentioned before the variations in weight that can occur depending on the time of day you chose to weigh yourself, but this current loss is based on weighing myself at the same time of day.

Eighteen months ago I'd have been happy to have this dilemma - eating more and losing weight.  But that was pre-cancer, and now I'm mindful of any and all changes in my body.

At the April clinic appointment Mr Hamilton raised the issue of thyroid changes as a result of the treatments, so now I'm wondering if this explains the current situation.

After both the April and July clinics, I had blood tests to monitor the thyroid levels (April was the base level and July was the comparison) and have heard nothing from the medics to indicate there is anything wrong, but does that just mean the change has only recently kicked in?  Or is there something else at play?

I don't want to jump to conclusions or speculate, so logic says it would be prudent to talk to somebody about this.  There arises the next little issue.

My next clinic appointment isn't until late October, and Tatiana is on leave until the end of this month, so getting her input is a couple of weeks away.  Yes, I could go and see another doctor, but that would mean talking to somebody who isn't across all the history, so I'd rather wait for Tatiana to return than deal with all of that.

Between now and then, I'll just continue to keep an eye on things.

Oh, and did you notice there is now an email notification option on this blog?  If you sign up for this, you should get an email whenever I add a new post.

Right is Might

One thing that I keep forgetting to mention when I talk about the changes I've undergone, and the adjustments I've had to make, relates to my eating habits.

I'm not talking about what I eat, but more how I eat.  Yes, the limited jaw movement alters how I tackle food, yes the saliva issues affect what I can eat, yes the lack of wisdom teeth means I tend to eat more "centrally" to avoid the gaps left behind, but the biggest change is my dependence/preference to eat with the right hand side of my mouth.

The radiotherapy concentrated on the left hand side of my head, after all it was the left tonsil that was causing trouble, so it is therefore logically the side that has suffered the most "collateral damage".

While I have previously commented on the partial "recovery" (that might be too strong a word, but I'll take every little improvement I can) of the saliva, in reality all the activity appears to be on the right hand side.  The left side is undoubtedly still the poor cousin and it is  very much an effort to eat on that side, in comparison to the right.

I've been quite happily ignoring this favouritism for some time, but over recent days, the reality finally hit me.  Since the "revelation" I've been making a conscious effort to try and use the left side of my mouth more, but honestly, it is a real effort and will take quite some time and perseverance to see if I can make it a viable option.

Being left handed (making the right side of my brain dominant apparently) I therefore find it somewhat ironic that I'm now relying so heavily on the right side of my body for something quite important.

Just goes to prove what a truly wonderful machine the human body is.  In my case, it has sort of rewired things to overcome a fault, and while it isn't a perfect solution from a "user interface" perspective, you just can't deny it is pretty damn effective.