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.

The Pendulum Swings

Friday was Daffodil Day - The annual fundraiser for the Cancer Society - and it ended up being a pretty good day.


The weather was good and my work had organised a fund-raiser (including auction) for the end of the day.  All up, we raised close to $1,000 from the proceedings and it was humbling to see everybody dipping into their pockets for a cause that is obviously close to my heart.


I've decided it is time to take another little look at how things are progressing for me and I must say that I think the pendulum is actually swinging more in my favour now.


Firstly, while I struggle to retain body temperature these days, with the help of thermals and a decent jacket, I can cope.  The big challenge has been trying to keep my fingers/hands warm, but after a couple of false starts, I've finally found some effective gloves (a perfect case of you get what you pay for - they were by no means cheap, but at times like this, money couldn't be allowed to rule the outcome).


Secondly, the saliva situation seems to have settled back down.  While there is definitely no return to pre-treatment levels, I'm pretty sure that there has been some recovery and certain foods are slightly more manageable.  Sure, some things are still too much of an effort to even bother with, but by the same token, with a little bit of care and patience, some other things can at least be tackled in small quantities so as to at least give a glimmer of normality.  The biggest "nuisance" is now probably the restricted jaw movement.  While a normal person can open their mouth to fit in 3 fingers, I can only manage two.  That means you have to take smaller portions and coupled with the saliva issues, adds to a slow but steady approach to eating.


I say the jaw is a nuisance, but in reality it is merely one of those side-affects that I have yet to find a workaround for.  While other side-effects are relatively easy to compensate for (I know what the limitations are and adjust accordingly), for some reason this little issue still catches me out from time to time.  It doesn't impede anything really - I've made allowances for it - it is just annoying.  Other things have "improved", but this bugger is just plain stubborn.


Speaking of stubborn, the one thing that doesn't seem to be enjoying any movement from the pendulum is my hearing.  I'm still waiting for the experts to get back to me, so in the meantime just have to ask people to repeat themselves and/or move closer to them to hear.  Noisy environments just exasperate things, but again it is perseverance to the fore.


Where does that leave things?  Well, sleeping is good, energy is steadily improving, weight is holding it's own (maybe a kg or so down), eating has settled, I've adjusted to the saliva status and the winter blast hasn't claimed me as a victim health wise.  My diet is still pretty much on the healthy side (the system throws a number of obstacles at me with regards the "goodies" I used to love and in all honesty I don't miss them), the osteo sessions seem to be making good headway and apart from a seasonal financial reporting glitch I'm still managing my time at work well.  The report card is therefore looking pretty good.


Long may it continue.

Happy Rebirthday

Yesterday was the one year anniversary of my last radiotherapy treatment and is now officially my rebirthday.  It seems to me that as it is the day that marked the new beginning, it deserved to be recognised on an ongoing basis.  It was something I decided on doing a year ago and still seems appropriate now.


I had great intentions of filing this post yesterday (doing the big yippee!! type thing) and even had an idea as to what the content would be, but it just didn't seem right.  So, with the extra day, a celebratory beer in hand and a slightly clearer head, here goes.


My treatment was due to finish on Friday the 13th of August 2010 and that seemed sort of poetic in some warped way.  However, through the 7 weeks of treatment we missed one day (the fact it was only one was pretty bloody good all things considered), so Monday 16th August became the magic day.  To say the last year has gone by really fast is the obvious cliche, but in reality that is exactly what has happened.


While it was meant to be the start of a new chapter of healing, in reality it was a new chapter in pain as my body continued to process the treatments.  


When I look back at this time last year, my blog paints a very different picture than the one of today (check this out for proof - so what next) and it is times like this that I'm absolutely gob-smacked about how matter of fact I was being about what I was going through.  It was probably drug induced stupor to some degree, but I think throughout this lengthy process I've downplayed the sheer brutality of it to myself.  Sure, those on the front line with me were very much aware of the challenges, but I seem to have gone with the flow pretty much and that is why looking back at these old postings still unnerves me a bit.


While I have nothing but good things to look forward to, I have no desire to actually forget what I've been through, or how lucky I've been. 


So, over the next few weeks I think I'll actually take the time to reminisce by reading some of those old postings and maybe then I'll finally be able to get things aligned in my own mind.


To all those people who were on the front line for me - another big thanks and this celebration is as much about your love, personal sacrifices and perseverance as is it about me actually beating the odds.

Whew!

The gang of 7 clinic appointment this afternoon went very well.  It went the way of others before it - everybody was happy with where I'm at.

Mr Hamilton got another good look at the offending tonsil and it seems I'll be "excused" the quarterly nitrous induced trip to the dentist now as a result of this new found ability.

I had another blood test to check the thyroid level.  At the last clinic in April, Mr Hamilton decided they should keep an eye on my thyroid levels as it seems they can get screwed around with the cisplatin / radiotherapy (another side effect to consider - great).  Given my energy levels still aren't back to a level we'd all be happy with, he thinks maybe the thyroid level is a bit wonky, so the test today will be compared to the "base line" one they took last time.

The gang of 7 was actually the gang of 8 today with quite a few new faces.  Four of them had a poke and prod around my neck/throat and there were a few anxious moments when one of them thought there was something of potential concern.  The majority decision however was it was merely the result of the tissue damage from the treatment (the scarring, etc that the osteo is trying to loosen up).  Whew!

My weight has indeed stabilized and Paul the dietitian was happy with my progress / variety with regards my eating.  As an aside, peanut slabs have returned to my menu, sort of.  The standard 50gm slab is still too much to handle, but the new snack size ones are a three bite luxury.  While even that presents some issues, they are worth it, yum.

So, another tick in the box thanks to the experts, and almost instantly all that apprehension I had been feeling over the last few days disappeared.  The only reason I can think of why this visit made me so anxious is that it is effectively the anniversary clinic.  August 16th is the anniversary of my last treatment, and by my logic that makes it the day I beat this thing.  Maybe, just maybe, I'll be more relaxed / accepting  come the time of the next clinic.  Here's hoping.

In the meantime, it is onwards and upwards and I'll just keep on pushing myself to find my new limits.

The Jitters Are Back

It's now only a couple of days until my next gang of seven clinic and, as has become the norm, the jitters are back.


It doesn't matter how many positive outcomes I get, come the time for these clinics, I always hunker down into a state of "fear" and doubt.  By now I should be accepting of good news - I've certainly had enough of it over the last year - but I just can't overcome that latent concern that as some stage things won't be as rosy at one of these visits.


I shouldn't be worried really.  After all, my last appointment with Mr Gillingham delivered a clean bill as far as he was concerned, and Mr Morrisey gave me a good poke & prod while he was doing the hearing test a month ago - he was also happy (and given he was the one who confirmed the diagnosis, that does speak volumes).  My weight seems to be staying pretty static (clothes may maketh the man, but they also screw around with the result if you don't remember to wear the same clothes each time you step on the scales - and you've got to also remember to weigh yourself at the same time of day ), my eating has settled down and levels of energy continue to creep upwards.  Sure the immune system is still a tad dodgy, but you can't expect miracles, especially at this time of year with all the winter weather challenges.


So why do I still feel apprehensive about Wednesday afternoon?  I honestly don't know.  At this time in the cycle, I end up kicking the PMA into overdrive to compensate for this "negativity" and each time I think I've got this under control.  Three months later and inevitably I'm going through it all again.  With each passing cycle, the odds of bad news surfacing lessen, but my concerns don't.


I'm putting it down to it just being a perfectly normal reaction that any survivor of a potentially terminal disease will feel.  Maybe it has something to do with not accepting you've beaten the odds.  Oh well, it's only for another couple of days.

Life Is Full of Ups and Downs

I know, it's somewhat of an overused saying, and I almost used another one - Life is like a roller coaster, but managed to resist (for now anyway).


Wow, it's been a couple of weeks now since this head flu knocked me around and quite honestly, I'm still not 100% over it.


The Codral Cold & Flu pills I was taking had some effect on drying up my nose, but they also had a downside - they really dried my mouth out overnight.  It took me a day or two to realise why my throat was so dry, so I stopped taking them and low and behold, the dryness abated after a couple of days.


By that stage, fortunately I was feeling well enough to "risk" going drug free and by and large, I have coped well.  As I said earlier, I'm still trying to shake the remnants - a goal not helped by the current cold snap that seems hell bent on keeping me sniffling for weeks to come.  Fortunately I've still got my nasal spray, but there is another down associated with that.


You see, I've started getting blood noses again.  Today was a pearler - I blew my nose when I got up and spent the next 10 minutes trying to stem the flow of blood.  All day I've had to resist giving my nose a good blow, and when I've succumbed, it has largely been blood as opposed to "nasal congestion".  It normally settles down after a day or two, so just another fun thing to deal with.  Fortunately, the bleeding nose is not too frequent an occurrence, but inevitably, the timing is inconvenient.  Taking nasal sprays during these times just doesn't really work.


Another up and down.  Melissa, my osteo, is making good progress with getting my upper left quadrant loosened up and working again.  The range of movement is certainly improving and my posture is returning to a more normal upright stance.  Great, but thanks to my cold, I've gone backwards over the last couple of weeks.  Seems when the system gets blocked up, the muscles, etc in the upper torso contract.  Hmmm.  And to add salt to the wound, I've also been getting headaches caused by all of this.  I initially blamed my new pillow, but after being beaten up by Melissa, my sleep pattern has now returned to normal.  Well almost.


Just before the cold took hold, I'd started to basically sleep through the night again. Wow, was that great.  It took a couple of nights to actually accept it, but it was one of those changes I was happy to embrace.  The damn cold soon fixed that.  My liquid intake has increased again during the time I've had the cold, so I'm up during the nights again.  I try to convince myself this extra flushing is good for me, but I'd quite honestly rather have the sleep.


So, as you can see, things are a bit up and down at the moment.  I think the ups are starting to overtake the downs (muted yippee) and given it is now only a month before the anniversary of my treatment ending, I'm not going to let these "annoyances" hold me back from moving forward.


Despite all of this, there is one overriding positive - it is life itself.  This time last year I was still engaged in an all out war with cancer and the fact I've come out of it the victor sure as hell trumps anything else being thrown at me - see, the PMA lives on.

Score: Winter-1; Immune System-0

Last night bought back all sorts of memories and not many of them good.


In a short space of time after getting home last night, my nose started to run and my head started to hurt.  Damn it, I've got a head cold! 
Last year, everyone stayed clear of me, so I avoided any colds & flus.  This year, I don't even know where I got it from, but I'm feeling all sorry for myself as a result.


So, last night was spent running around after my nose (fortunately I had a stock of tissues to call on) , then when I went to bed, the routine started to resemble the heady times of last year - up to the loo almost hourly, struggling to get comfortable, blowing my nose seemingly endlessly and eventually having to sleep on my back in an elevated position.


On the plus side, at least I know this is going to pass in the next couple of days, whereas last year, the routine seemed to be without end.


The one obvious lesson - take your immune system boosting pills Russell.  They are sitting on the table, but I just kept forgetting to take them.  Won't do that again.


And the obvious observation - my immune system is still a tad "delicate", so I'll need to continue being careful.  I will admit I thought it would probably be almost back to normal by now, but I was obviously wrong.  


I'm actually at home now trying to shake off the cold - in the past, I'd have just continued going to work (and share it around).  This time however, and as much a precaution for myself as anything, I left work at lunchtime and don't intend going back until I'm feeling better.

Hearing Test Outcome

I had my hearing test on Monday morning at Hutt Hospital and it was interesting to see the differences between Hutt & Wellington.

I've had 2 hearing tests at Wellington now and I must admit the equipment, etc looked pretty old.  Don't think that altered the result, but it seemed to somehow fit with the fact they are situated in the oldest part of the hospital.

Hutt, by comparison was a bells & whistles environment.  The gear looked newer and I was actually in a separate sound proof room for this test.  Some of the tests were also different in that they added additional noises to "confuse" my ability to hear the beeps and tones they had me listening out for.  And the results were printed out on a proper printout, not just handwritten!

End result - my hearing in the upper registers is definitely not what it should be, and that confirms what the second Wgtn test had shown.  Mr Morrisey didn't have the results of the Wgtn tests, so he couldn't confirm the loss was indeed treatment related, but I'm pretty sure the Wgtn before and after tests did show a significant drop from one to the other.

Now it's another waiting game for him to get the Wgtn records and then make a decision (possibly another 3 months before I see him again).  He was talking about getting Mr Hamilton to start the ball rolling with lodging a medical related ACC claim.  I may have to stump up for part of the cost for hearing aids (if they are deemed necessary) as good old ACC will play the age/degeneration card.  As in so many other aspects of this journey, a small price to pay for still being alive.

Oh, and Mr Morrisey suctioned my left ear to remove some debris and wax - a strange experience, but meant he could confirm both ear drums are A OK.

Body Tweaks

As I've discussed before, my body is still making adjustments post-treatment. While I've come to terms with or made allowances for most of these, some still catch me by surprise.


In my last post, I mentioned that something was afoot and since then, to be honest, something else has also surfaced.


Newest first.  As a result of the radiotherapy, the hair follicles along my jawline (ears to chin) and under both sides of my jaw got nuked.  This meant that as far as growing facial hair went, I was limited to effectively a goatee style.  I have no desire to grow one by the way, but one other side effect was it meant there was less to shave each morning.  Seems those days are coming to an end.


Over the last week or so, the jawline hair - both sides - has made somewhat of a comeback and now requires daily attention.  While I can cope with the additional effort required, it has caught me somewhat off guard as I was led to believe the hair follicles were nuked for good. This then raises the question of what else will/might come back?  I've already mentioned the changes in my hearing over the last few weeks, coupled with this I'm now wondering what else is going to burst back into life.


Which leads me nicely to the original comments about something being afoot.  While it is early days yet, it seems that I may possibly be recovering some of the saliva glands as well.  I'm playing down this possibility / significance as there may be other factors at work that are behind this, but regardless, it is indeed an interesting development.  


What I've found recently is I have a slightly lower reliance on my water bottle (is it a seasonal thing due to the colder weather?) and have even ventured out on short trips without it!  I can also now eat 2 pieces of garlic bread - might not seem a biggie to you, but given the problems bread has caused up until now, this is actually quite an achievement.  My mouth also seems to be "retaining" moisture better - I don't have to rely on the water as much to stop it being dry.  Given most of my time is spent in an office, the change of outdoor temperature can safely be ruled out as an influence here.  I also seem to be very slightly more tolerant of meat that is "turning" from being moist to slightly dry.


All little things sure, but I'm also having less middle of the night bladder issues - this means I'm getting close to six hours of uninterrupted sleep at night.  Is that weather related? Is my lower water intake the reason, or is something else also starting to return to normal?  My diet has changed slightly over the last couple of weeks as well, so is that having some perverse impact?  


I don't honestly know, but needless to say I'll be monitoring things with interest over the next week or two.

An Unexpected Side Effect

You'd think by now I would be pretty much aware of all of the lasting side effects of the last year, I know I thought I was.


Well, I got a wee surprise today.  I went to buy a new pair of shoes and it seems that along with my waistline, my feet have also gone on a diet and I now take shoes a 1/2 size smaller than before.  Bugger me, wasn't expecting that.  Also, in some cases I needed a wide fit, whereas now I'm a standard fit.


This hasn't really come to light before now because I was quite happily wearing shoes I already had and they seemed to fit just fine.  I'll potentially disappoint the females out there - I do not see this as a reason to rush out and buy heaps of new shoes just because of that.  I'll happily continue with replacing them on an "as required" basis.  I will however check all my existing shoes to make sure I don't wear anything that has become too loose and therefore uncomfortable.


While I'm at it, I have been somewhat remiss in not updating the blog for a couple of weeks now.  In all honesty, things have been ticking along quite nicely of late.  My weight is staying stable, I'm feeling a bit stronger physically and my stamina seems to hold up to longer, more frequent exercise as well.


I'm still aware I'm not 100% in some areas, but the list seems to be either slowly diminishing, or I'm adjusting somehow so some things don't hinder me as much and I move on.  Life is all about adjustments now, and as I've said before, I have to admit many of them are good ones despite the "background".


Oh, and the 27th of May was rather an "auspicious" day.  In fact one could say it was one of 3 x 27th's that day.  Confused?  In the mail on the 27th, came the details of my next clinic appointment - 27th July, and joy of joys, my hearing appointment - the 27th of June.


The hearing has been a bit "strange" of late.  I was watching TV yesterday and in an instant, the whole sound level just changed.  I'm used to the ringing, etc in my ears now, but imagine if you can,  listening to something with a lot of treble notes (making it sound a bit "rough"), then in an instant it becomes bass note intensive and strangely quite clear.  Sorry, best I could come up with as an example of the extent of the change.  It was rather short-lived though and the ringing, etc is back "to normal".  
There are times when I struggle with the fact that although my hearing has been affected, loud noises still "insult" my ears.  Weird.  Never mind, only a couple of weeks to go and hopefully I'll have a better picture of the way forward.


There is also something afoot in another area that is quite interesting, but I'll keep that under wraps for another time to see if it is an apparition or something more.