Tilting the Scales

This last four days since the last Chemo treatment has been rather interesting.  After treatment on Tuesday I felt awesome and was really pleased that several major milestones had passed.  The week saw me hit 4 out of 7 Chemo treatments - over half way there.  I was also looking forward to hitting 15 out of 35 RT treatments and therefore being over 40% of the way through.

I thought it was going to be a good week.  Not sure I got that right!.  Now, don't for one minute think I am unhappy and/or depressed but there have been a few shitty things that have tilted the scales slightly in terms of crappiness.

I may have contributed slightly to the slight downturn.  On Wednesday, we had a big day at School.  As the CFO and Company Secretary I take a great responsibility for the conduct of School Board meetings.  What that usually means is a 12+ hour day each day there is a Board Meeting.   This one was no different.  After arriving at 8:30 am, I work for the day until 3:30pm and then head over for treatment.  After treatment I head back to school arriving just before 6:00pm, happy to have arrived in sufficient time to prepare for the meeting.

It is here that things start to slide.  As has been happening over the past three weeks, it appears that the minute I "rest" after treatment, the body takes over and says "That is it big fella - time to stop for the day".   So I really start to go down hill in terms of fatigue relatively quickly.

Here is the biggest mistake I have made so far in this treatment journey - I dug in hard, pushed through and stubbornly insisted to all for the next 2 1/2 hours that I was fine and was coping trying to record minutes and act normal, when my body and head was telling me - GO TO FRICKIN SLEEP.

Stubbornness? Grit? Stupidity?  I have the benefit of hindsight to tell you now that it was a combination of all three.



Arriving home after a half hour drive, after 11 1/2 hours of work left me totally buggered, but I thought a great night sleep would help.  So when I jumped out of bed at 6:30am the next morning I thought I would be fine.  WRONG, WRONG, WRONG.

The aches came at 10:30am,  All my joints from my shoulders to the back of my knees were screaming at me by 10:30am.  It was a strain to walk the 30+ metres to the Print Room, to retrieve printing.   The headache intensified every minute I pushed through the aches.  My head was pounding, my eyes were burning, I was finding it very hard to concentrate.

I was easily agitated and finally gave it all away at 1:00pm.  Enough was enough.  I headed home and just hit the lounge.   Now I did not sleep at all during the afternoon.  I was not mentally tired, just physically drained and I realised that I had acted rather stupidly in thinking that I was still capable of working at full capacity each day.   I should have learnt from the past three weeks that I was going to be effected. Every Thursday (2 days after treatment) is the worst.

I met with the School Principal on Friday, and I am so grateful that the School and the Board are so supportive that, as a safeguard to me own health, I am now able to work from home, so that, I can rest when needed and yet still contribute to a place that up until very recently (see later comments) has been a great place to work as well as a sensational source of personal motivation.

But today is Sunday - start of another week.  Wednesday 27th April is the tipping point.  Half way through and boy how fast is the journey going.  It really is like a roller coaster.  You are so engrossed in what is going on that you don't realise how quickly things are passing by.

This week and the weekend has provided me with the following -

1. The biggest rash outbreak to date.  I am literally covered in rashy spots that whilst not itchy, feel like little bee stings to touch.  This is easy to overcome.  The steroid cream takes that immediate pain and it is very easy to choose not to touch them.

2. The taste buds are departing slowly.  It is amazing what I can no longer taste.  Water tastes awful. Imagine a glass of water with two teaspoons of salt in it.  All water tastes salty.  Add cordial, salty cordial, add coffee, salty coffee.  The only relief is chocolate milk.  Now go figure that!  I can't taste chocolate at all yet chocolate milk tastes great.   Eggs taste fantastic, I can actually taste the egg white.  There is wonder to be found in tasting things to find out - hmmnn no taste OR hmmmn Yummy, I can taste that.  It is a bit like a mouth lottery each time.  Hopefully I am gonna get a win every now and then.

3. The blistering/ulceration in my mouth is now causing about 10-15% discomfort. Sensitive to hot/cold, aggravated by acids and searingly painful if stretched by yawning.  I am thankful, as you can see, that at this point my saliva glands are still working very well as I am not really looking forward to having dry mouth and only having salty tasting water to moisten my mouth.  I might not get dry mouth, which will be a bonus, but I am assuming that these little bugger ulcers are gonna spread and make this a bit more challenging.

4. The fatigue is now ever present.  I was up at 7:00am today feeling fantastic and headed upstairs to collect some things that my folks are taking back to Brissie.  Trip one was fine, trip two was okay, trip three was like OMG this is not good and trip four was like WTF!!!  Totes okay to walk on flat ground but holy crap the minute you place any exertion on the thigh muscles they just think bugger your jack.  I listened to my body and just sat down for a while and was fine.   Then Lisa and I went for a walk - 8:30am.  Flat out doing 1.5ks (750m each way).

5. The most significant outcome for the week is a sincere and truthful reflection on what I think needs to happen next in my life.  We all read that these types of "wake up" calls can have an effect on us, and I think that this has been the biggest challenge for the week.   I am very much driven by what is the right thing to do.  For me it is always about making sure that what you do is right for all those around.  It is always easy to do what is right for your loved ones, but it is sometimes more challenging to what is right for others.

I received some really troubling news (the resignation from the School Board of a valued colleague) which really slapped me in the face in terms of reality.  The decision for this person to leave had not come easily to her, however her evaluation of all the pertinent facts enabled her to identify the correct course of action.   Discussing this with her has triggered a similar thought process in my head.  So I have spent the past days reflecting most deeply on what next for me? what next for my family? and to whom do I "owe" anything?  Is there any unfinished business?  What do I/we want post treatment? We had already started planning our around Australia trip but now the questions start to rise in my head - when should we go? should we go?.  I do not have any answers as yet, but the time to reflect has been extremely valuable.  We must each do what best motivates us in life, and I find myself questioning what motivators will drive me post treatment.  I do know, and can feel that there is a change occurring.  I now find myself identifying that there is potentially a change in motivations.  I do not think that it is unreasonable to experience a "change" when faced with a challenge of this nature.

Lots of conversation will be had in coming days/weeks as we, as a family, consider our options and piece together what we want for our collective future.

But hey, I have to enjoy the next 26 days as best as I can.  ANZAC Day tomorrow, up at 5:00am, so that I can really go an pay my respect to all those who gave so much for the freedom and lifestyle we enjoy today.....