At this time last year, I did a year in review piece (see here) and it is therefore only right and proper that 2011 gets the same acknowledgement.
Wow, have things changed this year. It would be very easy to gloss over the many events of the year, because when push comes to shove, surely it is the end result that is important isn't it?
That is where I struggle a bit. My "new normal" effectively dictates that I don't take life for granted any more and that means I end up both analysing and in most cases appreciating things that have had an influence on my life. So with this 'ethos" in place, here goes.
The year started with a return to work full-time and while I did struggle with energy levels, etc initially, I'm now back to doing full days without any noticeable side effects. I did start off by being very diligent with my hours and concede I've fallen somewhat back into longer hours, but 2012 is a new year, so will tweak things back a bit. Important thing here is I acknowledge I've "fallen off the wagon" and need to adjust for the long term gain. Given the events of 2010, it has been really good for me mentally being fully immersed into work again.
During the year, the Gang of Seven continued to play their part and as I sit here now, I feel the last of my concerns have finally been addressed. With the aid of the thyroxine (late October) I finally got control back over regulating my body temperature and I've been able to enjoy the recent lovely hot weather. And in late November the hearing aids finally provided some relief with regards my ongoing hearing issues. The subsequent tweaking of the volume has only enhanced the experience, and I'm sure the next/final tweak in early January will complete the process.
The one thing I struggled with for most of the year was my inability to accept that I had beaten the cancer, with each pending clinic appointment bringing on a bout of anxiety. I think I've finally beaten that as well. I'm looking forward to moving on without that fear as I know it has held me back a little.
It has been a good year as well as far as the other "potential" health issues go. The annual diabetes check has me back to normal levels, and the hemochromatosis is now also back down to levels that are within the desired range.
Sure, the good old saliva issues are still there, but like so many of the other "minor" inconveniences, I have found ways around it. My eating is pretty much back to normal (albeit that mealtimes still require more time than they used to as I compensate for restricted jaw movement, etc) and I'm even eating a bit more bread "comfortably". I still have to be careful with anything spicy (having even found the need to experiment with things like tomato sauce to find one with low/no spice content), but I consider these adjustments are now just part of life. And I must be doing something right as the weight is remaining nice and stable.
There are still some things from my past that I still can't eat, but I've moved on and no longer really miss them. In most cases they have been substituted for something else - and it is normally something that is better for me. I will say though, that I'm pleased to be able to eat a bit more chocolate now than I could at the start of 2011, although the quantity is way down on what I used to be able to consume. The same applies to alcohol- while I can at least drink a couple of beers now, I certainly can't handle the quantities I used to. I'm pretty much in designated driver territory now. Wine is still pretty much 100% off the "menu" though. What I've tried to date is just too dry on my throat and I can't be bothered even trying now.
My general energy & stamina levels are also continuing to improve in leaps and bounds. I'm now regularly walking for a solid 60-90 minutes without any problem, and currently alternating the walking with biking for 40 minutes minimum. The workout from the bike rides is so much better/satisfying that I'm actually leaning more towards the cycling whenever practicable. It is more challenging and I can really feel I'm pushing myself, whereas walking doesn't deliver that same buzz any more. Hills still present a challenge, but I'll get there with time.
Ongoing issues being taken forward into 2012 are actually pretty minimal. I'm still receiving treatment for my tight neck muscles and everyone concerned (osteo & acupuncturist) are happy with progress to date. Hopefully we'll have a major breakthrough early in the year and will be able to tick that off as well. Worst case is we'll hit a plateau where there is no further improvement, and that will be my new normal as far as that is concerned.
While I'll never forget what I've been through (and nor do I want to), I must say I'm no longer "haunted" by the experience and am really just moving forward with my new life now.
I said some time ago that I'd continue this blog until such time as I received the final all clear from the Oncologist. I've still to get that, but I'm also in the mindset now that it is almost a matter of process now. I think once they're happy with the results of the thyroxine (next appointment is late March) they'll stretch the appointments out and that will signal the start of the final stages. See PMA still working.
The Russell going forward into 2012 is, I believe, a considerably stronger person both physically and mentally than the one that started 2011, so watch out everybody. I hope you are all looking forward to the new year as much as I am.
Saturday, December 31, 2011
Tuesday, December 20, 2011
The Most Important Lesson?
The last week has seen a couple of reasonably high profile local deaths as a result of cancer.
Last Thursday, Kiwi racing driver Jason Richards succumbed after a very brave 14 month fight and just yesterday Natalie Murphy, the young Auckland mum whose plight captured the hearts of many, also passed away.
Both these victims were young being in their mid-30s, and both put up a bloody good fight, living every day to its potential and delivering what I consider to be an important message.
I appreciate this posting might come across a bit "heavy" and quite honestly I probably wouldn't be so passionate about it if I hadn't been through a battle with cancer myself, but I did and now I feel I have to do what I can to get people to appreciate how precious life is. So, I'll make no apologies.
I'll never really understand how I came to be lucky enough to be one of those chosen to be a survivor, but I'm just bloody grateful I was. I've said on many occasions how I'm now living my second chance and treat every day as something precious. Life is for living, not for moaning about what-ifs.
So, why do so many people not embrace the privilege that is good health? You never know when your number is going to come up, so surely you owe it to yourself, and all those that you love and who love you, to make the most of every day and be the best person you can.
To just go through the motions and moan about "everything" is existing not living. Sure, some people have been dealt a cruel hand, but by-in-large they are also the fighters who don't wallow in self-pity. Why do people expect good things to happen to them or for others to support them because they have a "woe-is-me" outlook?
I have a very close friend who has been dealt the double blow of redundancy and pretty serious health scares this year, but they aren't just curled up in a ball waiting for somebody else to fix it for them. No, they are getting on with life and making the best of what cards they've been dealt. Sure, things are bloody hard for them, but they know others are worse off.
I said early this year that I now have a "new normal" and my tolerance for negative people was now pretty non-existent. Not surprisingly, I continue to observe people who do nothing to better their situation/outlook by carrying on about how tough things are for them, while doing nothing to try and change it. I don't think I actively seek them out, but I can't avoid them either.
I dare these people to front up to the families of Jason Richards, Natalie Murphy (or even my family for that matter) and try to extract sympathy from them. These people have lost loved ones who epitomised the most important lesson of life - life itself is a gift, not a right, and as such is worth fighting for with everything you have.
Terminal illness will always win on the sympathy stakes (and so it should) and never more so than when the patient is doing everything they can do to fight for every last minute with their loved ones.
While this is the season of goodwill, I must admit to finding it a bit harder than normal to show tolerance for the moaners of society.
Please, all I ask of you is to stop and take a look at your life. Think about how lucky you are to be alive and start to make some changes (if you need to) so that you become one of those positive people who enjoy the gift that way too many people are currently taking for granted.
Positive Results Keep Coming
Last Thursday I had my annual diabetes check-up. Prior to my cancer challenges, I was diagnosed as borderline type 2 diabetic. Before we could do much about it, the cancer made itself known and all efforts went on fighting that.
At my check-up last year, things were looking pretty good, but again as I was still in full recovery mode, they were more than happy to leave that as the priority.
This year I'm obviously "fighting fit", so it was going to be interesting as to what the results were. I had to fast for 12 hours before blood tests on the Saturday (a bit of a bugger as that was the night of the work Christmas party), but I duly obeyed and "donated" 3 vials of blood.
Come Thursday, the moment of truth arrived - and it was all good news. My results put my levels fair and square in the "ideal" range, they were happy with my weight and my feet (I presume there is a reason they check them) passed muster as well.
All good for another year.
At my check-up last year, things were looking pretty good, but again as I was still in full recovery mode, they were more than happy to leave that as the priority.
This year I'm obviously "fighting fit", so it was going to be interesting as to what the results were. I had to fast for 12 hours before blood tests on the Saturday (a bit of a bugger as that was the night of the work Christmas party), but I duly obeyed and "donated" 3 vials of blood.
Come Thursday, the moment of truth arrived - and it was all good news. My results put my levels fair and square in the "ideal" range, they were happy with my weight and my feet (I presume there is a reason they check them) passed muster as well.
All good for another year.
Wednesday, December 14, 2011
Pump Up The Volume
Sixteen months or so ago, that term would have referred to my need for more morphine. Today, it refers to tweaking my hearing aids.
Back to the hearing aids. Nicholas has tweaked the volume and what a difference it makes. While there is a slight distortion to the sounds now, I think that will settle down as my brain adjusts. Even typing this, the noise of the keys is really loud and knocking my watch strap against the desk is also really noticeable now. They still aren't set to maximum level, but that will be reviewed at my next appointment in early Jan.
The level of the various notification beeps (like low battery) has also been raised, so hopefully I'll hear them in the future. Speaking of which, the batteries had to be changed again yesterday. That means the first ones lasted 8 days, while the second set only lasted six. Obviously I'll need to be aware of the varying battery life and make sure I've got spares readily to hand. It will be interesting to see if the increased volume impacts on the battery life.
It's quite amazing how far things have come in that time, and while the comparison may seem weird, in reality it is a perfect snapshot of how different things are now versus the same time in 2010. I am really looking forward to a "normal" Christmas this year - and many more to come.
The level of the various notification beeps (like low battery) has also been raised, so hopefully I'll hear them in the future. Speaking of which, the batteries had to be changed again yesterday. That means the first ones lasted 8 days, while the second set only lasted six. Obviously I'll need to be aware of the varying battery life and make sure I've got spares readily to hand. It will be interesting to see if the increased volume impacts on the battery life.
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
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.
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.
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.
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.
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.
Saturday, October 29, 2011
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.
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.
Tuesday, October 25, 2011
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.
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