Sunday, August 16, 2015

I Made It!!

Five.  Today is five years since I finished treatment, so it's my fifth re-birthday.  To be honest, it's a mixed feelings sort of day though.

I'm really happy to have got here and when I'm finally discharged by ENT in a couple of months, it will justifiably become another milestone day.  I'm just not feeling as ecstatic about this particular day as I have in previous years and I'm not sure why.  Originally I was going to have a party to celebrate getting here, but I just haven't been able to get excited about it recently.

It is possible my enthusiasm is being tempered by the ongoing issues with my throat.  It's now been a year since it flared up again, and the experts seem no closer to finding a solution that works long-term.  To say this is annoying is an understatement and I seem to be spending way too much time trying to manage the throat issues.

I've managed the last two weeks without taking any fluconazole, and things have been bearable - just. There seems to be no signs of the oral thrush anywhere, and there is no news regarding having a scope put down my throat to check things out   So it seems to just be a case of continue to experiment with ways to try and keep the discomfort at bay as much as possible.

What I have found is that by resuming taking omeprazole daily the symptoms don't seem as bad as they were when I was taking it every other day, so that's a small victory.

At my last infectious diseases clinic (this week), they said they don't see any harm in me taking fluconazole weekly to see if that also helps, so I'll resume that from tomorrow and find out if it does anything.

I've always held today up as a momentous day in this process, but while this is meant to be the day that signifies I've effectively won the fight, I feel slightly cheated that the cancer can still flex it's muscles like this after so long.

Sunday, June 7, 2015

The Mental Balancing Act

Every so often I take a look at some of my previous posts.  At one stage I even started at the beginning and was honestly shocked by not only some of the things I went through, but also the things I'd forgotten.  I certainly don't mind the memories of the pain being pushed into the background.

There is no doubt my life has changed as the journey has progressed and some of those changes have definitely been mental as opposed to physical.  It's those mental changes I want to talk about here.

By the time treatment was over in mid August 2010, my outlook on life had changed, and when I returned to work in January 2011 there was no doubt I had also made changes in my attitudes and approach to work.

It would be easy to say I had bought into the infamous work/life balance, but looking back now I don't think that is actually true.  I certainly curtailed the long hours, my tolerance for dealing with the "whoa is me" merchants became almost non-existent, and I was making a conscious effort to ensure I put myself first.

So, four years later what has changed? Well, I'm back to working longer hours, thankfully still can't tolerate the naysayers, but most alarmingly, I now have doubts as to whether or not I'm the one in control.

2011 was a year of learning in reality.  Establishing what my body could and would handle, rebuilding my physical strength and seeing how much I could  actually do.  There were the ongoing medical visits, etc so it was very easy to make sure I was looking after myself.

The subsequent years have seen a new normality establish itself, the clinic visits are now few and far between and the big question I'm now asking myself is just how different my 2015 life is from my pre-cancer one.  The next logical question is then whether or not I'm happy with my lot today.

I'd be foolish not to acknowledge the bleeding obvious - if I hadn't had my 2010 experience I almost certainly wouldn't be here today.  Timing is everything.

But, and it's a big but, I was given a chance at a new life and I have to wonder if I've made the best of it.

Don't get me wrong, I personally believe I'm a better person now than I was then, but I go through phases where I question whether or not the fading memories have softened my attitudes and I'm no longer striving to be the best person I can be, or indeed making the most of the opportunity presented to me.

I remember my parents wanting me to push myself and to be the best person I could be, and I tended to interpret that mainly from an academic viewpoint.  Now I'm looking at the big picture and wondering if I'm settling for something less because it is easy and/or convenient.

Somewhere in the memory banks is something about life being too short to not make the most of everything that comes your way everyday. Am I really doing that, or am I just doing enough to placate my conscience?  I suppose I should also be asking does it matter?

Is doing enough of what doesn't necessarily make you happy in order to allow you to do what does really the extent of our goals from life?  Thus, working is a necessary evil (unless you win big on the lottery).  Should we actually be pushing ourselves to be the best person we can be?  Or does it really matter because to do so could actually only be satisfying somebody else's wishes/expectations, when ultimately happiness/gratification is very much a personal thing?

I don't have the answers, and as you can see I'm not even really sure of the question.  All I know is that the effects of 2010 continue to make me ask questions of myself that I'm not always happy with the answers to.

Monday, April 6, 2015

A New Clinic to visit

When I looked and saw the last post way back in November, I was rather shocked.  I knew I'd been slack, but didn't realise how badly, so I apologise.

Despite we're into a new year, I'd have to say it is pretty much just a continuation of 2014, with the elephant in the room still being my ongoing throat issues.

Last time I said it would probably require a visit to the Doctors, and it did with the outcome being more fluconazole tablets and a referral to the infectious diseases clinic.  Two things - at least it allayed my fears re the return of the cancer, and what gives with infectious diseases?

Anyhow, as I waited for the infectious diseases (ID) appointment, it was the normal cycle of alternating weeks for the tablets coupled with the Nilstatin.

February 4th had me at the Infectious Diseases clinic not knowing what to expect.  Doctor was nice and again put any residual fears re cancer to rest (Moira said she could see the relief on my face instantly).  He agreed it was a little unusual to be having these issues so late in the piece, but the body is a complex instrument after all, so you never know when something like this was going to appear.  That said, he was a little surprised the fluconazole hadn't knocked the bugger off, so a new regime was put in place.  Forget the nilstatin as there was no evidence of thrush actually in my mouth and it wasn't offering any substantive relief anyway.  Stop taking the 50mg fluconazole and take a course of 200mg instead to really try and deal to the problem.  And for good measure, let's take some bloods to check all sorts of things to see if something was out of whack with my system.  He also floated the possibility the thrush had actually got into my oesophagus and that the previous dosages, etc weren't actually getting to it to get rid of it once and for all.  I've got a follow-up appointment in May to see how things have progressed.

By the end of the larger dose pills, I was feeling pretty good, but it wasn't too long before the now usual and expected flare-up occurred.  By now I've developed a small tool-kit of trick to help me through.  Water on its own no longer cuts it - milkshakes and soft drinks seem to provide a degree of coating that soothes things a bit, and ice-cream provides a wonderful relief, as does jelly lollies such as jetplanes.  The secret is to keep drinking regularly - if you wait too long it is bloody uncomfortable for the first couple of swallows.  I was also fortunate to have a couple of cycles of 50mg pills as emergency backup.

At the end of February we went to Melbourne for a week's holiday which started with going to the Eagles live (absolutely awesome 3 hr show of just them on stage), then the rest of the week was the holiday/tourist thing. The weather was outstanding with temps hitting early 30s on occasion and that just meant I had to use my last dose of the 50mg tabs to keep things at bay.  Another interesting discovery - Schweppes Sparkling Raspberry soothe the throat a real treat and I now keep some on the fridge at home as my go to drink.

March 4th was my ENT clinic appointment with Mr Morrissey and things there went well.  Weight is stable (pleasing as I was sure it would have gone up recently) and from the cancer perspective, I'm having one last appointment with him Sept-Oct and then he says he doesn't want to see me any more.  Yippee!

Throat wise, I gave him a copy of the ID clinic notes and he said there was nothing extra he would have done, except possibly putting a scope down my throat to actually see what is going on down there.  He has suggested that I tell ID in May that he is more than happy to take a look via scope if they don't want to, so we'll see what happens there.

So, really the saga continues and it is fair to say this is the one side effect of everything along the way that has proved to be the hardest to deal with.  Sure the saliva thing is a permanent issue, but by in large it is manageable and now doesn't interfere too much with daily life.  The oral thrush thing is however ever present and there is no doubt I suffer if I drop my guard at all.

Which leads to yet another change to the drug regime.  When we got back from Melbourne, I was faced with what the hell I do now I didn't have any more pills.  I rang the Health Centre and asked for a nurse to call me so I could talk through the problem - I didn't want to make an appointment to see Tatiana unnecessarily, and I wasn't sure if I should still be asking for a repeat prescription for fluconazole.  Well, bugger me, Tatiana rang herself and once we'd talked it through I'm now back on the pills, but instead of week on - week off I'm now taking them every 2nd day to maintain a steady dosage in my system.  

So far, that seems to be working reasonably well.  Sure, I still have awkward days, but they are way more easy to deal with than having to wait a week before I can take any pills.

I'm sorry this has been a marathon post, but it all needed to be said.  This blog still remains an important tool for me to record what has happened on my journey (despite my patchy post timing).  I've had reason to revisit posts a number of times and I'm always amazed at how things have progressed.  It is as a direct result of such a revisit that I already know what the subject of the next post will be.  Promise it won't be a 4 month wait.