Friday, December 31, 2010

The New Normal

Being New Year's Eve, it seems appropriate to have a year in review piece.  Get yourself comfortable, this could be a long one.

OK, so 2010 is the year that has, to put not too finer point on it, changed my life.  It is really easy to just brush aside the first four months, but to some extent, they set the foundation for what 2010 could have been, and will hopefully form the foundation for what 2011 will be.  With the marriage break-up, I moved into my own home late March and started adjusting to my newly single life.  Was making good inroads I thought and was looking forward to things like walking and bike riding to keep me sane and obviously help with losing weight.

By late April, things were taking a turn for the worse.  Initial doctor's appointment, specialist appointment and pending procedures were setting the tone for what was to become two months of preparations/waiting, followed by two full-on months of medical hell, then four months of recovery.

Along the way, there were lots of changes, lessons, revelations, complications, diversions, frustrations and ultimately successes.  Overall, and this might sound strange, a wonderful learning experience, just a shame about the circumstances.

This blog has endeavoured to chronicle the journey, and while there are some gaps during the times I was hospitalised, I'm not going to revisit it again now.  What I do want to do is address what the "new" normal is for me.

While I entered this challenge with the positive mental attitude I believed was required to see me through it, I didn't really appreciate how my life was going to change. In reality I've come out the other side with a new attitude to life.  Yes, we all take our health for granted and yes, it really does sometimes take a major life-death event like this to make you take that required action to do something about it, but what would my situation have been had the cancer not surfaced?  I'd have been significantly overweight, probably a confirmed type 2 diabetes sufferer, but still convincing myself I was happy and OK with it all.  The diabetes would have forced some changes, but I know I'd have been doing the bare minimum to keep it under control.

Instead, I'm 24kg lighter, no longer at risk of diabetes and have learnt that just doing the minimum doesn't cut it.  I also learnt that when given a second chance, you don't waste it, you grab it with both hands and treasure it.  

While the dieticians want me to put on another 1/2 to 1kg before they remove Jake, rest assured I have no intention of retaining that extra.  Once they agree to remove the peg, I'll increase my exercise levels and cut down on some of the sweeter dietary items to get back to where I currently am.  After the best part of six months with only a liquid diet, my stomach has shrunk (I certainly get full on smaller size meals now) and have no desire to return to the large meals of old.  I didn't need them, it was just habit.

I've also got a different attitude towards people and problems.  I have never suffered fools easily and given what I've been through, my tolerance for people who portray a 'whoa-is-me" attitude over trivialities is now almost non-existent.  That said, where in the past I might discount someone/something quite arbitrarily, I now actually listen more and think through situations more before making a judgement/decision. 

What else has changed? I certainly have no desire for my work to totally dominate my life like it did before all of this.  I love my job and will always put in more than is required (it is a work ethic thing with me), but I also now appreciate the importance of getting some down time so your body gets a chance to recover and you get a chance to de-stress / unwind.

The importance of others really hit home this year as well.  The bravado going in about how I could look after myself was quickly dispelled and I became dependent on my now hopefully famous team.  It took a lot for me to accept I wasn't some super-hero that could do this on his own, but once I did, my outlook changed forever.  No more taking  people for granted, but instead understanding their importance and appreciating them (keeping in mind the bit about suffering fools above).  

My whole outlook going into 2011 is so different from how this year started and I do indeed now have a new normal. I'm healthy once again and with my new attitude/outlook hopefully a better, more balanced, person to be around.  Being given a chance to put the lessons learnt this year into action is indeed something I'm not taking for granted.  I'm one of the lucky ones to survive and think I owe it to everyone to make the most of the incredibly fortunate second chance I have been given. 

My New Year's Resolution?  Quite honestly, I don't have one.  I'm more than satisfied with "just" being alive and well.

So, in closing, a final 2010 thanks to everyone who has helped get me through all of this.  While some of them have been mentioned before on numerous occasions (family, friends, specialists, doctors, nurses, district nurses, my work family at all levels, cancer unit team, radiotherapy unit team, ambulance staff), some have largely operated under the radar, like Matt and his pharmacy team.  The volume of drugs that have come through these doors this year has been not only staggering, but also daunting and Matt and his team have quietly gone about their business ensuring I got what was needed on time, which in some cases was no mean feat.  

Here's looking forward to a 2011 we can all enjoy.

Thursday, December 30, 2010

Menu Update

As the year draws to a close, thought I'd give you a little update on my attempts to expand the diet choices.
  • Curry: (norm is mild butter chicken).  Having tried a couple over the last week or so, can report that the meat isn't an issue, but the rice is.  Can't cope with large quantities of rice and naan bread is off the menu.  Also, if they aren't honest about it being mild, the extra heat of the sauce makes it untenable.
  • Kebabs: As previously advised, can manage half of one.  Problem is really dealing with the 'bread". If concentrate on the meat and salad, get through more.  Have to be careful though that the meat they put in isn't too dry.
  • Salads: Being summer, seems appropriate to be having sliced ham, salad, etc.  Well, it seems thinly sliced meat isn't much fun.  Give me thick cut slices and things seem OK, but the thin ones, as is normal for supermarket delis, present unforeseen problems.  Some potential issues with the acidity of tomatoes, but will keep a watch on that.  Potato salad, cucumber, lettuce all seem fine.
  • Beer: Having broken the drought, am now enjoying the occasional beer.  Can only handle one stubbie at the moment and even that makes me tired and in need of a sleep.
  • Snack Foods:  Still finding my way around what I can consume.  The really small 18g packets of potato chips take some work but have become manageable. Pineapple lumps - one at a time only - are back on the menu, as are of course the M&Ms.  Jelly lollies still present some issues, but can be managed with perseverance.  Nuts are now back on the menu as well.  In the good old days, it was grab a handful, toss them in your mouth and chew/swallow.  Now the handful has become a "pinchful" of maybe 6 peanuts that take some considerable work and ultimately needs to be washed down.  I've now got a packet of scorched almonds in the cupboard to treat myself to, hopefully one day soon.
  • Pies: Tried my first pie the other day since all of this began.  Had to cut away a fair bit of the pastry, but managed it well.
  • General:  Really still just trying things to expand the diet.  Dinners still comprise meat and vege, but experimenting with different ways of cooking the meat to ensure it stays moist.
One other thing, the saliva substitute is an interesting product.  Seems to work - sometimes better than others - and is quite a strange sensation when you spray it on your tongue.  The success of the other stuff to try and promote the existing glands is harder to gauge, and hasn't been helped by me forgetting to take it 3 times daily.  Strange really, I've been so regimented with taking the maze of drugs for months, yet now I only have one to take, I forget it.  

Wednesday, December 22, 2010

Merry Christmas From the Gang of Seven

Firstly, the gang of seven is remaining alarmingly static.  I'd hoped to see a couple of them fall by the wayside by now, but with the exception of the oncology registrar, Bernard, they all still keep on coming along.

Anyhow, seems things are still good.  Everybody was very happy and it seems the scarring from the radiotherapy in my throat is either healing well, or has in fact healed already.  It was a bit hard to hear which as there were a couple of conversations going on at the time.  Either way, I'll take it.

Neck and jaw was feeling really good to the 3 who decided to have a feel - another tick in the box.

So, everything considered, another great result.  Next follow-up will be three months away, so they are starting to stretch these further apart as well.

There was some concern about the gastric bug induced weight loss and it seems that once they actually see me regain some of that weight, they'll approve having Jake taken out.  So my holiday target is to oblige.  I weighed myself before I went down today and it would appear I've managed to regain about half the weight I've lost over the last month.  If I keep pushing myself, getting the other half, plus a little more, back as well is quite achievable.

Now some exciting news and it is in the believe it or not category.  It seems there is no end to what they don't have a substitute for.

As part of the consultation, I asked if there was something to give me back my saliva glands.  After some further discussions, it seems there is something that mimics the saliva and I now have a prescription for it.  It may work, it may not, but worth a crack anyway.

But wait, there's more.  I also have a prescription for some spray/liquid (not sure what) that may (or not) stimulate the remaining saliva glands into working harder and/or possibly kick start some of the dormant ones.

Exciting times to be had over the next couple of weeks as I find out if the treatments have any impact.

And, we may have found the cause of the cursed gastric bug.  Seems the antibiotics they gave me for the pump infection issues can upset the stomach lining and cause diarrhoea.  The irony of it all.

One final good news item.  My dietary restrictions are now all off.  I am allowed whatever I want and can manage, so more experimenting to come.  Looks like butter chicken could be a starter in next day or two.  I managed 1/2 a kebab yesterday, so things are happening.

Honestly, I couldn't have asked for anything better in my Christmas stocking (well not anything I'd tell you lot about anyway).  Has been a really good day.

Tuesday, December 21, 2010

Au Naturale

Before you start getting excited, I'm referring here to the act of sleeping.

I'd decided to try sleeping on Friday night without the aid of any sleeping pills.  It worked just fine, as has each night since.

So, while I'm now free of drugs that stood in my way of having my first beer in oh so many months. it must be said that I don't actually feel like having one - what a quandary!  Free to sample, but no urge to.

I'm sure I'll overcome my "resistance"soon as it doesn't seem natural not to have a drink or two over the holidays.  Will have to watch the intake though as I'm sure my tolerance to alcohol will be considerably lower now.

Check-up with the gang of seven tomorrow - hopefully they'll agree to take Jake out.

Thursday, December 16, 2010

Some Observations

With the recover well and truly underway, here are some random observations/rants.

While the area under my neck is indeed largely a no-need-to-shave zone, the hair on my chin and my face seems to have decided to grow faster than it used to.  Or is it just because I've forgotten how fast it used to grow?  Either way, the daily shave is back on the agenda.

Wet shave is still my preferred option, but admit to being lazy and just using the electric shaver on most occasions as haven't regained the wet shave routine yet.

The Lump on My Neck:
Still there and likely to be there forever.  Gives me sort of a double chin ,that seems contrary to the "leaner" me as a result of the weight loss.

A small price to pay for successful treatment.

Despite eating seemingly all day, my weight has dropped another Kg.  Not sure the dietician is going to be happy with that,  but given I'm actually doing physical exertion type things now (as opposed to just blobbing around the house), I would expect to lose a bit of weight.  Am I clutching at straws, or right to take this stance?  Time (and dietician) will tell.

Good news is it has held stable for the last week though.

What a challenge to find out what the body will tolerate and can process.

While I'm now eating normal cuts of meat as opposed to just minced, still some issues with ensuring the meat is moist.  Have found 'dry' meat cause issues.  So what starts out hot and moist, can become a problem as it starts to cool and dry out.  Pork cuts seems worse for this than do their beef equivalent.

Chicken is a real challenge.  The texture (quite stringy effectively) is weird and I struggle with it.  Even nuggets are somewhat of a mission.  Popcorn chicken works (see I've managed to reintroduce KFC), but is a lot of work and only in small quantities that represent a snack, not a meal.

Breakfast now normally consists of weet-bix, which has replaced the previous norm of porridge.  Weet-bix is a lot quicker and I've found just as satisfying/filling.  Porridge now a weekend "treat".

Instant noodles used to be my lunch mainstay, but they have started to cause the throat some processing issues as well.  Interestingly, the beef ones are worse than the chicken ones, yet only difference should be the flavour sachet.  Weird but true.  To the absolute shock of those that know me, lunches now consist of macaroni cheese (true), other single serve pasta meals, omelettes or scrambled eggs.

Dinner now consists of an attempted "meat and 3 vege" each night.  Some nights becomes a bit of a mission, especially if I'm feeling a bit tired, but I understand the need and in all fairness, seldom come away not feeling full, so must be doing something right.

Local Roasts have proven a good "easy fix" as the food remains moist to the last, so is easy for my system to handle.

Dessert favourites now are Aunt Betty's Steamed Puddings.  They come in a number of different varieties, but didn't enjoy the after dinner mint one.  35 seconds in the microwave and some ice-cream = bloody marvellous.

Can now eat potato chips in small quantities (they gunk up in my mouth as no saliva to help ease them down) and despite my diet being meant to exclude breads, can manage single pieces of sour dough bread - providing it is toasted and I'm prepared to spend the 10-15 minutes worth of effort to help ease it down.  I kid you not, it is a real commitment to eat bread.

Another side effect of this eating lark - the dishwasher needs to be turned on every 3 days or so to deal to the dishes.  It had been through a period of some 4-5 months where it was turned on maybe once every 2-3 weeks, now it is earning its way.

One thing I'm meant to be having is fortisip straight out of the bottle, or as part of a milkshake.  All I can say is thank goodness I didn't have to rely on drinking this stuff during my recovery, it tastes terrible straight out of the bottle and the milkshake version was equally unpalatable.  In fairness, haven't tried all the flavours yet, but not holding out much hope that they will have made one particular flavour nice.

Suppose if my taste-buds hadn't recovered I'd be none the wiser, but they have thankfully and once again I can be picky.

Thanks Jake for taking the hit on all those fortisips over the months for me. 

Seems to be less of an issue now.  Have found some pills from the health shop that work and I'm pleased to be off the potentially addictive ones given to me by Tatiana.

Sleep is still somewhat "disturbed", but I don't wake up feeling tired, so I'm obviously getting enough combined sleep to satisfy the body.

Intend to try a pill free sleep tomorrow night - if it fails, have weekend to recover with the aid of pills.

One potential "benefit" of the non-prescribed pills is I can now technically drink alcohol.  Figure given the weight loss, etc, my threshold will be considerably lower and intend to try my first beer from the safety of my own home.  Might be part of the celebration of my first night's sleep without any pills? 

Early Mornings:
When I wake up, my throat is really dry, despite my sipping water during the night.  I used to be sipping almost non-stop (2 x 750ml of water a night, plus the resultant toilet stops to interrupt sleep), whereas now I seem to stop sipping around midnight and only consume around 500ml a night.

So while I get more sleep, I have to deal with a dry throat in the morning.  Water is the  preferred initial "treatment", but the other side effect seems to be a fair bit of phlegm builds up overnight now, so that also has to be moved and invariably it becomes a vicious cycle. Drink to ease the throat, which loosens the phlegm, that by shifting in turn aggravates the throat again.  Gotta love it.

Solution seems to be drink water for a while, then switch to soft drink for a while.  However, after maybe 2 glasses of soft drink, have to revert to water.  Why?  Well, without the saliva, the sweet syrupy taste of the soft drink remains and means I'm trying to get rid of that, making the lips and throat work overtime, and the cycle starts again.  Reverting to water seems to provide some sort of balance.

Does it ever go away?  No, it just settles to a tolerable/manageable level.

Previous Blog Posts:
I sat down and started reading the posts from scratch the other day. Got as far through as posting #26.

Was really interesting (I'd forgotten some stuff) and quite an emotional exercise as I once again faced the early stages of my battle.  At some stage I will pick up where I left off, but think it is going to be one of those things I do when I'm in the right head space.

Seems to be a non-event now.  Last appointment has everything at acceptable levels and apparently my cholesterol level is now really good.

Given my diet consists of so much high fat and sugary stuff (only doing what I'm told), that was quite amazing, but I'll take it thanks.

In it's own strange way, the cancer has had benefits - my weight loss has helped take me out of the type 2 diabetes danger zone.  Not the preferred method of achieving this though obviously.

Time to go and sort out some lunch now.

Wednesday, December 8, 2010

A Week Can Seem Like A Lifetime

It is one of those things you can never quite fathom.  Where has the last week gone?  We put up the normal responses and these days the common one seems to be that the pace of life is such that we don't have time to ourselves to stop and think.

To some degree, I agree with that, but since my illness, I tend to look at things slightly differently - every day is now actually rather precious and a bonus.  So, I'm working from home at the moment and therefore somewhat masked from this cursed pace of life argument, yet I still struggle to account for the last two or three days, let alone the last seven of them.

Is there a solution to this, or does it really matter?  I think it does as we owe it to ourselves to ensure we have a series of checks and balances in our lives that help to ensure our sanity, happiness and longevity (something else I no longer take for granted).  I'm sure if I had a pre-packaged solution, I'd be very rich about now, although not necessarily happy.

So why raise this if I don't have an answer.  As we enter the festive season, it gives us an opportunity to thank and/or acknowledge those around us for simply being there.  I believe that our extended circle of family and friends are instrumental in helping us keep our balance in life.  Bouncing things off them and sharing in their problems helps us to find outlets for some of our own issues.  Equally, their support makes some of our own serious issues seem manageable.  We're all living day by day and as the recent tragedy at Pike River once again showed, you never know when today will be your last.

To a large extent, I've faced many demons this year, and I know that thanks to my "circle of influence", I've been one of the lucky ones to come out the other side.  Without this unquestioning support, my battle would have been an awful lot more daunting.  Without their humour, it would have been easy to feel very sorry for myself and surrender, as opposed to maintaining the all important PMA. We've all watched how a country got behind the Pike River families, but do we ever stop to think how lucky we are ourselves with our own support networks?

All I ask is we take a moment to think about those nearest and dearest to us.  I've learned a number of things this year and the one thing that sticks most in my mind is the way people just rise to a challenge and offer their help and support without question.  I don't think I'm alone here.  None of us could survive without our support crews, so let's make sure we take the time to acknowledge it to both ourselves and them.  As I've learnt, you never know when you're going to need it.

One thing I do know that has happened this week, is my diet has changed.  While minced meat was the previous preferred option, I now find that it sticks in my throat easily because it is effectively such small pieces.  so, I now cook/eat normal "cuts" of meat and cut it up and chew it normally.  This doesn't seem to stick in my throat as much, but it still takes a long time to finish a meal.

I've also found a cure to my chocolate cravings - M&M's.  They're small enough that a quick bite is sufficient to make them manageable and after 4 or so, I'm feeling satisfied and the small quantity means they don't gum up in my mouth.

Wednesday, December 1, 2010

Worth A Crack

I've been taking the sleeping pills for just over a week now and decided I'd try to sleep last night without taking one.

The result could be best described as a failure - I got 3 hours sleep from 4am and a little broken sleep before that.  So, today I'll be taking things quietly and trying to have a nap at some stage.  That in itself should prove exciting as I've been unsuccessful in previous attempts to grab a nap during the day.

Back to the pills tonight.  Because they have worked so well, I'd almost forgotten what it felt like to try and function on so little sleep.

On another note, my sister Faye came for a visit over the weekend.  She lives in Brisbane, so has been somewhat of an "interested observer" with regards to my trials and successes over the months.  It was great to catch up with her and she has now seen first hand that I'm on the mend.  The weekend was busy (she arrived early Friday morning and flew out again early Monday morning) and quite tiring, but worth it.  Wellington showcased itself well with such great weather and it was an ideal opportunity for a Sunday cruise in the Vette with the roofs off.  Thanks to Ruth S for taking on the early morning airport runs.

Man, I'm tired.  Today is going to be tough.