Tuesday, August 16, 2016

Now's The Time To Say Goodbye

Today is my sixth re-birthday, so it seems like the perfect day to bring the blog to a close.

As you'll see, I haven't done any posts since this time last year, and while I could make excuses, the reality is everyday life has unfortunately taken hold.  That isn't to say that there haven't been events / happenings worth sharing, just I never seemed to find the time, and when I did it didn't seem relevant if you know what I mean.

23 May 2016 is another milestone day to enter into the records (see what I mean about how time runs away) - I got my final clearance from Mr Morrissey and am deemed to be cancer free.  He said he doesn't want to see me again and I hope I never need to.

It was somewhat of an anti-climax to be honest.  I sort of knew that's what he'd say, and even the fact the clinic appointment was so long after when I expected it (Oct 2015) it didn't really matter.  I knew I was doing OK, so there wasn't even any trepidation going in.  No big party, no celebratory cake, just another day above ground.

Don't get me wrong, I know I'm very lucky to still be here, but as time has rolled on in the last six years, I have subconsciously put away the 2010 challenges and got back to normal.  How much of the new normal still exists?  Having forced myself to stop and reminisce, I'd say there is most definitely more of the new one around than the pre-cancer normality.  To me, that is a bloody good thing as it means deep down I'm staying true to myself and the promises I made when I started coming out of the treatment regime.  I'm not even going to try and guess how much I'm the new Russell vs the original one as the most important thing is I'm comfortable being the person I am today.

I've sat down and looked at the last few posts, and compared then with some of the original ones and it is clear that the ongoing issues I'm dealing with today are nowhere near as consuming as the heady days of 2010-2011, but what I find interesting (and repeating myself no doubt) is that each and every one of those issues serves as a reminder of what I've been through and you know what, I'm really glad there are still daily challenges.  In their own way, they provide a humbling effect that stops me being too cocky and help keep me grounded.

Of course, my journey to today wouldn't have been possible without both the dedicated efforts of all the talented and skilled medical personnel, and the endless love and support from family and friends.

Bar a timing issue with my baseline hearing test, there were no glitches in any of the medical treatment.  We're truly lucky to have such a good public health system in this country.  I know it isn't perfect, but in my case I can't praise it enough.

A very special thanks to my two primary caregivers - the two women in my life, my sister Ruth and my darling wife Moira.  

Ruth effectively gave up her life for six months to care for me and still work and keep her own family functioning.  Now she is dealing with her own health issues, that unlike mine, cannot be fixed and will ultimately rob us of this wonderful person.  While they've struggled to get medications and support right, with the introduction of the palliative care team and Te Omanga Hospice, things have stabilised and Ruth has been home now for over two months, which is where she wants to be, and more importantly, she continues to put up a fight.  Me thinks my family are fighters.

Moira has obviously shouldered the burden of support during the challenges of the post-treatment era and the one thing she has confirmed for me is shopping can be therapeutic - in moderation of course, it provided the perfect distraction from my worries and substituted them for how to keep her under control :-).  All joking aside she has been my rock and kept me balanced when things were starting to get me down.

I'll finish with a brief update on the remaining daily issues that make life interesting:
Saliva - not too much of an issue now as have adjusted to it and it's just a fact of life
Sore Throat - manage with the fluconazole and food/drinks that seem to soothe it, but still flares up
Sore Jaw - not something I've shared with you all (apparently another delayed side effect of the radiotherapy), but have finally found some treatment to reduce the pain and starting to get it under control.
Ankle - might finally be an end in sight there as well thanks to a podiatrist and orthotics

So there you go folks, the time has come to say goodbye, and thanks for your interest in my journey.

Take care of yourselves - and remember PMA is your friend.


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.

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".

Friday, December 13, 2013

Jake Takes A Bow

For me, my brain seems to become over-active regularly twice each day.  Firstly when I'm in the shower, secondly as I try to get to sleep.

Why these times I don't know, and believe me I wish I could understand where some of the subject matter comes from.  I struggle to see what the urgency/importance is in rehashing some plot line from a TV program I watched 3 days ago, but for some reason I need to address this instead of just gently falling off to sleep.  And I'm sure what part of the section is next for attention could wait until the morning as well - the shower seems more appropriate for that.

One subject that has however crossed both periods of extra brain activity over recent days has been Jake.  When I went to the Doctor's a week or so ago, she pointed at the scar and for a brief moment she forgot what it was there for.  I've paid scant regard to the scar myself of late as it is largely just a war wound, so had a minor chuckle over Tatiana's lapse of memory.

Why then has my brain decided that I need to think about Jake now?  I have no idea.  I could probably construct one or two wild theories, but the only thing that seems to make any sort of sense is season related.  As you can see, I've indeed been devoting some "normal" brain activity to the subject.

Anyway, with Christmas approaching, I can only assume that at some level there is a recognition that 3 years ago I was just relearning to eat and that Christmas was somewhat of an effort food wise.  It took me absolute ages to eat the basics and the diet was somewhat limited.  Now things are virtually back to normal, with the normal caveats regarding limited jaw opening and saliva issues.  Sure, it still takes more time to eat, but the menu is pretty much restored.

Jake obviously was my source of sustenance during treatment and recovery and over time it is easy to gloss over that contribution.  Obviously the Doctor's visit and sub-conscious brain prompting coupled with coming across my old medication plan (which included the Fortisip "feedings") have all transpired to make me acknowledge Jake's part in all of this.

So, here goes,

Jake arrives 19th May 2010

19th Jan 2011 Jake Comes out
No anaesthetic, just deep breaths

Not even any stitches -
will close over naturally within 24 hours they say

The battle scar today

Jake in all his glory

I have Jake at home as a momento, as I do Hugo, and every so often they come out for show-and-tell.

As we head into the Christmas season, I suppose it is only appropriate to be thankful for what we have, and Jake has certainly played his part in keeping me here, for which I will always be grateful. 

One final thought.  The Brain is part of the wondrous machine that is the human body.  What this little exercise has shown me is sometimes it pays not to 2nd guess but just go along for the ride.

Tuesday, November 26, 2013

Saliva Issue Shows Itself in New Ways

For almost too long to remember I've gone on about how the treatment related saliva "sacrifice" has what can only be called an ongoing presence as it impacts to varying degrees on my day to day life.

By and large I've adjusted well to the changes, but every so often I find myself being caught out by something that either I've taken for granted previously or something new.

Summer is a wonderful time of year and one thing I've had to be extra careful of now is ensuring my face & neck are always well protected.  The treatments have meant I can't handle direct sun like I used to, so extra care is taken regarding sunblocks.  But the new realisation is with regards to how the summer heat is triggering my dry throat.
I've been  doing a fair bit of work outside of late, and with the unusually hot weather over the last week or so I've been finding that merely drinking copious quantities of water isn't sufficient to deal with the dryness in my throat.
Last summer was really hot (at least for a week or two) and I can't remember this issue being of concern back then.  Yet in 2013, and we're not really into full-summer heat mode yet, this turn of events has had me thinking about how I'll deal with it over the coming months.

Couple this with another event of the last few days, and my limitations have been well and truly been brought home.  On Saturday we went to a concert and having got caught up in the moment, decided (in my tone-deaf way) to sing-along a bit.  As we left the venue, the dry throat kicked in with a vengeance.  Sure it was rather warm on Saturday night,  but I hadn't had similar issues during the preceding days which were equally tropical.

Now, not being able to vocally participate at a concert is probably a good thing for those around me, but given it is now 3 years down the line, I'm surprised to be experiencing such "fluctuations" with my throat.

I've got some biotene spray that seems to provide some degree of relief, but I'm also resorting to an array of other "remedies" that seem to help and some of those aren't good long term for my waistline, so I think it is going to be a case of keeping an eye on what I'm eating, how much talking I'm doing, etc to see if there is some tweaking that I can do to bring this issue back under control.

You may also have noticed I've updated the template for the blog.  I decided it was time for a change and the chequered flag image is somewhat symbolic of winning the 2010 fight and moving on.