Sunday, November 30, 2014

Return Of An Unwanted Consequence

This post was started just under two months ago, upon our return from a holiday in the Cook Islands.  At the time, it was going to be a reasonably small post dealing with the effects of the climate in the Cooks on my post-treatment system.  However, every time I sat down to complete it, something else sprang up health-wise and that took priority.

This then, is a completely clean-sheet post in which I'll bring you all up-to-date.

Towards the end of August, my throat started playing up again.  It became really raspy and I was having difficulty swallowing.  A visit to Tatiana saw some words uttered that had last been heard in Sept 2010 - Oral Thrush.  The condition is a direct result of the lack of saliva allowing the bacteria to grow, but nature had kept it at bay for 4 years, so why now?  Tatiana has no answer for that and "bad luck" springs to mind.

Anyhow, I'm given some Nilstat to take for a week and told to come back if it is still a problem.  In fairness, it did start to settle down quite well, so I just continued the Nilstat for an extra week for safety.

By then it was about time to board the big bird and spend a week in what is now my favourite Pacific Island destination  (If somebody wants to shout me a trip to Hawaii, I'm prepared to reconsider that viewpoint).

The trip to Rarotonga and Aitutaki was the first off-shore excursion since the end of my treatment, so to some degree it was stepping into the unknown.  Sure, I'd been told I needed to be more careful regarding sunburn around my neck as the radiotherapy had an impact on the tolerance levels, but apart from that I'd been given no special list of dos and don'ts.  The 2012 Christmas Day heatwave hadn't presented much in the way of issues, so I was pretty relaxed about it all.

And, to be honest, apart from the need for a slightly increased water intake, the holiday went without a hitch.  It seems that the heat even benefited my ankle as I had absolutely no issues with it, despite doing a fair bit of walking. 

So, relaxing on the flight back home, it seemed my body was quite happy to visit the islands again whenever the desire took me.  You know there is a "but" coming now don't you. 

But, everything was not as it seemed.  We stayed overnight in Auckland on the Thursday night, prior to catching a red-eye flight to Wellington the following morning.  Without word of a lie, within 4 hours of landing in Auckland, my throat was flaring up.

Come the Saturday, it was so bad I went to the after hours Doctor for an 11:45am appointment.  I got home again after 10pm that night, eventually spending all afternoon and evening at the Hospital.  At this point, I should probably mention I developed a rash on day 4 in the Cooks that was very reminiscent of my previous sun tan lotion allergy (although the brand of lotion I'm using now has been trouble free for a good 7-8 years), and the antihistamine wasn't doing much to relieve it. So, I presented with the sore throat and rash.

To be fair, the symptoms made the Hospital ponder somewhat and after some blood tests they came to the conclusion the oral thrush had come back with a vengeance and the rash could be viral, related to the thrush. Goodie.

I came away with more Nilstat and some analgesia to help ease the sore throat and was referred to the Acute clinic for follow-up the following week.  That follow-up ended up being the week after (Oct 13th), and by the time they saw me, things had settled right down.  Throat was more than 95% OK, no visible signs of the thrush and the rash had fully gone.

Come Friday Oct 17th, I was back at the Doctor's as the throat had flared up again!  This was really starting to get annoying. I saw the duty Doctor and he prescribed some antibiotics and more Nilstat along with instructions to see my regular GP the following week if things don't settle down.

Friday 24th, I'm back seeing Tatiana, and low and behold (as women will know) antibiotics actually induce thrush.  Tatiana wants a two week course of Nilstat (apparently one week isn't really enough) and if that doesn't work she would look at some pretty potent oral medication.

No prize for guessing where I was on the 13th of November.  I walked out with a prescription for more Nilstat (including repeats) and Fluconazole tablets.  The fluconazole is apparently an anti-fungal and prescribed to people who have had radiotherapy - and I'm wondering why wait so long to offer this solution to me then.

Instructions were to take the tablets for one week in conjunction with Nilstat.  Apparently there isn't an exact science to this, so I was told to mix and match to find something that worked.  Oh, and I can't take more than a week at a time - there needs to be a week gap between course of the tablets.

At the end of week one, things were going pretty damn well, in fact almost back to normal.  However, that was short lived as the sore throat returned within 3 days of stopping the pills.  That meant I had to wait until yesterday before I could start the 2nd course, and although today is only day 2, there has already been improvement.

All this isn't helped by the current travel I'm doing out of town as that requires a fair bit of talking ,which aggravates the throat even more.

The relief from the Nilstat has also become a lot shorter in that it only offers 1-2 hours relief now whereas it used to provide 4-5 hours. On top of that, the effort required to swallow as painlessly as possible takes a fair bit of energy and I'm knackered at the end of each day.  This weekend has been really low key as I just don't have the energy to do much.

Needless to say, it seems there'll be another visit to Tatiana in the coming days and maybe even a sit down with Mr Morrissey before long to see what he can offer.

In the meantime, this coming week should be pretty good and it will be the following one that will be a downer.  "Life is a roller-coaster" as the song says,

At this late stage of my journey, at least in my mind, I'm not meant to be having these sorts of issues.  Something has changed and until I know what it is, I'm suffering an automatic escalation on the "dread level" scale.  PMA is doing well to keep it to a minimum as I'm currently convincing myself it is only a short term anomaly, but the longer it goes on, the harder it gets not to worry about it being something a tad more sinister.

Saturday, August 16, 2014

Four Again

Today is re-birthday #4.  August 16th 2010 was my last day of treatment and using the old adage "the first day of the rest of my life".

I've been thinking about doing a new blog post for a while now, but decided to wait and do so today to mark the occasion.

Last year I said these anniversaries weren't the big thing they were originally, but for some reason I'm excited about this one.  Maybe last year being 3 and the "middle one", I got a little non plussed about it, but with today being #4 and only 1 to go, it is pretty hard to overlook the significance.  That's my excuse anyway. 

It seems strange that in 12 months time it will mark the end of the five year period that supposedly signals I'm "cured" - or is just an all clear?  Of course nobody will actually ever say I'm cured, what they'll say is the likelihood of the cancer coming back is extremely low and I'll be in a holding remission state for years to come.  But that's next year's discussion.  As long as  I get a crack at celebrating my 90th birthday as my Aunty Mary did recently, I'll be happy.

Regular readers will have noticed that recent posts talk less and less about the ongoing side-effects of my treatment, and that is largely due to the fact that they are just part of my daily life now and I don't think about them that much.  This is probably a good time to have a catch-up on these issues though.

The dry throat as we know is a result of the radiotherapy nuking my saliva glands. 
On a daily basis, I have a number of tools in my toolkit to deal with it (
mixture of water and biotene spray seems to work most of the time), none of which is a silver bullet.  The dryness still catches me out sometimes after I've been talking for a while, and even when I'm eating too.  I'm still drinking around 750ml of water with every evening meal, lunch varies depending on what is on the menu (anywhere from 400ml to a full 750ml, and at least another two 750ml bottles being consumed during the day.  That's a fair volume of water and yes, the visits to the loo are frequent.  As has happened in previous years, the cold weather seems to produce a deeper sleep and I seem to be able to survive on maybe one interruption to my sleep as opposed to the 3-4 that occur during summer.  Given I drink similar amounts all year round, the only thing I can put it down to is in summer I'm not in such a deep sleep and let the "urge" rule me more than I should.  Will need to work on that - possibly a little bit of mind over matter.

The loss of my higher frequency hearing as a result of the chemo affects the lower sound register.  My frustrations with the hearing aids are now well documented, and they have unfortunately resurfaced.  Returning to work also meant returning to daily use of the hearing aids and what I again found was it made not a jot of difference if I was wearing them or not.  Bugger.  Back to the audiologist and this time I saw someone new who decided to go back to square one.  The aids were sent away to make sure there wasn't an issue (there wasn't), so next step was to check what the ears were actually hearing from the aids.  For the first time I was hooked up to a machine that has a small tube placed a fair way into each ear, then the aids are put on and sounds played.  The machine records what the ear is actually hearing and that highlighted that the aids had been set up to compensate for the wrong frequency losses.  Hallelujah moment.  Duly adjusted, the aids are now delivering a consistent benefit. Now I'm used to them, I'll probably get the volume tweaked a tad, but at least I can hear softly spoken people now, or most of the time anyway.

In reality, these are the only two ongoing issues I have to deal with daily, and I'm fine with that.  Every day above ground is a good day, and I'm thankful the side affects of my treatment are so relatively minor. 

My teeth have thankfully all settled down again, and that leads nicely to the status of the left side of my mouth.  I've mentioned before that things were showing a degree of improvement and to be fair there probably has been, but not to such a level as to be called significant.  Sure I can chew food a little more occasionally on that side now, but it just doesn't feel comfortable to use regularly or for long periods of time.  I'm not sure how much of that is my natural resistance (given I've relied on the right side almost exclusively for so long now) versus a medically induced limitation.  The real test will be if I have an ongoing issue with the right side of my mouth that means I have no other alternative than to push the left to its and my limit.

And FYI, my ankle is still a work in progress - damn it all.  There has been some good progress with strengthening it up a bit, but the exercises also cause it to flare up, so it's almost a classic chicken and egg scenario.  Next Friday they're going to put it in a moon boot to try and reduce the compression that occurs with downward pressure, so that should be interesting (can't bring myself to call it fun).  They're hoping the moon boot will allow everything to settle, thus avoiding surgical intervention.

So, there we go.  The countdown to Year Five officially starts now.  Here's hoping there are no bumps along the way.


Monday, April 7, 2014

An Overdue Update

Yep, without a doubt I've been remiss of late in regards to this blog, so time to make amends.

When water doesn't cut it any more.
A while back I talked about how this summer was causing me more issues than normal with regards my dry throat.  I can report than the cocktail of remedies are still struggling to deliver a silver bullet with regards to relief.  It seems to be a twist that I'm just going to have to adjust to.

Dental Dilemmas
Over the last six months or so, I've been troubled by some dental issues.  On one occasion I broke part of one of my front teeth (bad luck coupled with very old filling), and on two other occasions I've had rather severe toothache, with the latest incident still in play.
Prior to my cancer, my teeth caused little trouble, but now it seems the oral healing challenges brought about by the radiotherapy are coming into play a bit more and quite frankly it concerns me a little.
The current toothache took hold Friday night and affected the right side of my mouth which is the side I've come to rely on for eating since my treatment, so presented an additional problem. Despite popping Nurofen to try and stem the pain, it wasn't working and come last night it was so debilitating we had to contact our dentist to try and seek relief.  A sprint to the pharmacy and a telephoned prescription to them saw me walking out with antibiotics and voltaren.  Today I feel a lot better, no doubt helped by the first decent nights sleep in 3 days and the 2nd dose of the drugs.  I have an appointment with the dentist this afternoon to try and find out what the underlying issue is, but I'm starting to think we may have to put some sort of contingency plan into effect.

Is The Left Side of my Mouth Coming Back
Since my treatment finished, it has been nigh on impossible to eat using the left side of my mouth because the saliva production is virtually non-existent on that side.  In the past I've mentioned a possible slight return of the saliva, but it has never been comfortable to eat on that side as it has always been too dry.
Well, with the aforementioned toothache over the weekend, I was forced to recall the left side to service so to speak and while it was by no means ideal, it at least performed at a rudimentary level sufficient to enable me to eat.  I must admit I was limited to soft foods anyway, so the real test will be with normal food.  And I'm going to give it a go to see what happens.  Will let you know the outcome.

A Treatment Perspective
I injured my ankle in November last year and since then my physical activity has been substantially curtailed.  I've had x-rays, physio and recently an MRI on it to try and find  a solution, but it seems that may still be some time off.
What it does however bring to light is this interesting tidbit:
     -It has been 5 months since I injured my ankle, and it is still awaiting resolution.
-     It took just 4 months from diagnosis to end of treatment to deal to my cancer.Go figure.

Clinic Appointment
Today was my clinic appointment and I'm happy to report I got another tick on my report card.
They gave me a hearing test and the results were unchanged from the previous one, so there has been no subsequent loss.  They also tested my ears for nerve health, etc and it seems they are also normal.
So, we're now at the 4 years since diagnosis mark, and the next clinic visit will be in nine months time.  The 5 year anniversary of the completion of treatment (August 2015) is the next big milestone as that effectively represents the medical definition of my being cured.  Can't wait.

Tuesday, February 4, 2014


There are few words in the English language that seem to have the power to evoke reactions as does "Cancer".  Once the Big-C is uttered, people may recall those they have lost to it, those they know how are fighting it and/or those who have beaten it as well as the apparent randomness of it. 

Inevitably the word Cancer conjures up the thought of a merciless indiscriminate killer, and to be fair it does deserve it's bad reputation.  Too often young people with their lives ahead of them are cut down, and despite our desires that the outcome be different, the lucky ones that pull through unfortunately do not represent the majority of sufferers.

Why the morbid start to the first post for 2014?  Well, as one of the lucky ones, I am thankful everyday for the medical advancements (in both knowledge and treatment) that underpinned my recovery.  I'm even doubly blessed in that the ongoing side effects don't really interfere with my daily life.  Sure I've had to make adjustments, but nothing that stops me living the "full and fruitful" lives we all strive for.

And there is the kicker, the reason for this post.  Despite the infamy associated with the Big-C, many people out there suffer daily with medical conditions that turn their lives upside down and unlike me, they will never get their previous lives back.  While these conditions may not have the mortality rates of cancer, they never the less cause immense strain on the wider families of the sufferers, and that suffering is ongoing.

Two of my close friends live daily with medical conditions that have drastically changed their "standard of living".  There are no magic cures for either, so they have had to literally change their whole lives to compensate. 

And you know what, they do so without any self-pity.  Instead liberal doses of PMA abound and a "things could be worse, just got to make the most of it" mindset rules the roost.  They'll never get back the lives they used to have,  but it isn't stopping them making the most of the lives they have now.  And they are surrounded by people who care.

One thing that gets right up my nose though is when people make the inane "I know how you feel" or "I know what you're going through" comments.  Unless you've been through exactly what I have, no you bloody don't.  The reality is I would never say that to a fellow cancer sufferer because I know types and treatments can be so different.  Likewise, I don't profess to know exactly what my friends are going through at the moment, all I can do is offer them whatever support I can to help them through.  I have gained a bit of an understanding of what they face, but that is not the same as living it.

Where am I going with this?  Unfortunately it seems to take someone close to us to become afflicted before we take stock of our own lives and what is important.  We all face our own trials and tribulations daily in this fast-paced world, but we need to look at the bigger picture.  Ask anybody who has been through a long-term medical issue, and they'll shout from the rooftops about how invaluable the support of their loved ones (family & friends) has been in their ability to deal with it.  So, why do we not support each other more of the time? We need to find within ourselves the ability to take stock of what matters to us.  People can sometimes struggle with asking for help, wouldn't it be nice if the help was offered without being asked?

Let's make 2014 the year where we don't sweat the small stuff, stop taking our health for granted, and embrace what we have to the full.  Let's also find a way to spend more time with our loved ones so they know should the need arise, we've got their back. That's the new perspective on life we need to find.

Promise next post won't be so "deep".