Tuesday 25 December 2012

Busy Getting On With Living - Some Final Thoughts

Christmas day 2012.  At the start of this blog it seemed so far away, but here I am, sitting here on Christmas night, feeling slightly uncomfortable having eaten and drunk just a little too much, but still falling to the temptation of jamming a Favourite's Flake in my mouth with a handful of nuts.  We just got a call from Dr Gowda from India just to check again how Karen is going.  Still blows me away to think just how much he cares even on holidays.  I certainly don't leave work with that level of passion.

I have decided this will be my final blog about our cancer journey.  It really has been a runaway roller coaster which finally came to an end on Monday.  Karen had her last treatment that afternoon.    It was a very emotional day, as we were so glad to be finished with the treatment, but by the very nature of going in to the RAH every day for the last 7 weeks, met some wonderful people whom we said goodbye to.  I can not speak highly enough about all of the staff we have encountered.  Right from the front desk to the nurses station, the radiotherapists and oncology doctors.  Their level of care and compassion is second to none.  We are so indebted to you lovely people.  Thank you.

We are now focused on recovery, which will be another long and arduous road I am sure.  We have been told that the side effects will continue and may even worsen over the next 2 to 3 weeks before starting to get better.  I still struggle with the notion that the thing that has caused Karen so much pain is the cure!  We are now only required at the RAH on a weekly basis for  the next 6 weeks or so.  Hopefully the feeding tube will be able to be removed in 2 to 3 weeks.  A CT scan is also scheduled for  the 6 week mark.  So that's our January pretty much taken care of.  I am back to work on the 7th, but will still be a bit all over the place attendance wise as we still try and juggle appointments and kids.  I suspect Karen will still be on morphine for most of January so that kind of dictates what we can do as well.  

So that's the practical side of it all.  On the emotional side of things, I am pretty much done.  Without doubt, last week was probably the hard week of all.  With the constant worry of Karen and what a poor state she was in, trying to avoid her being admitted and then Nate with his surgery and subsequent infection.  I really felt I got to that point where I just couldn't keep doing it any more, but i did.

Closing Thoughts. 
I hope this has worked.  I don't wont to go through this again.  I would not wish this upon anyone.
Cancer is lonely.  As much as we have been helped by so many people on so many fronts, it is a lonely journey.  Even with Karen home it is lonely.  She is not able to speak at the moment, she is constantly tired and the very nature and location of the side effects means I am hesitant to get to close in case I accidentally cause her pain.  I find I am doing a lot more of the kids running around and that is lonely.  It is like a snapshot of what it would be like without Karen and I hate it.  It upsets me that I even think it, but that very thought still lurks in the background.  

Thanks again in no particular order to all the staff involved at the RAH, Cedar College, Telstra, Klemzig Community Church, family and friends.  We could not have made it to this point without the help of so many.  We are still overwhelmed and a little embarrassed by the generosity of you all and the willingness to help.  So what now?  I plan on getting busy with living.  If nothing else, this experience has shown us the frailty of life.  It makes you stop and consider and prioritise what is important in life.
For me it is my family.  It always has been, but perhaps I never really stopped to truly appreciate them daily as I should.  My beautiful wife and my wonderful, funny, quirky three boys  are the loves of my life and are the reason I get up each day to take on what lays ahead.  I look forward to doing this for many years to come.


Saturday 22 December 2012

Light At The End Of The Tunnel

I have to stop saying dumb things like, "surely it can't get any worse."  Guess what?  It did.  On Thursday, Nate took a turn for the worse after his operation, getting an infection.  With a fever that night and the following day I ended up taking him to emergency at Woman's and Children's.  So now armed with antibiotics to add to our growing arsenal of medications, today it appears he is beginning to get back on the mend.  This on top of the worry of Karen just about did me in.  It says in the bible that God will never give us more than we can handle.  Sitting in Emergency last night with Nate, reflecting on all that has happened to our family, I was really having reservations about this, but here I am the next day, spirits buoyed by Nate's improvement overnight, telling you all about it.

So hopefully with Nate's little sub-plot dealt with, it is back to the business of Karen and her treatment.  We survived the rest of the week managing to keep Karen from becoming an in patient, due to her increasing side effects.  She has surprised a lot of staff at radiology who have commented that people with far less side effects than what she is dealing with have been admitted.  Having said all this we have had lots of discussion with her doctor here at RAH, a Professor and her consultant who is currently on holidays with family overseas.  He has been fantastic keeping in constant email contact with me getting updates about Karen, culminating in a phone call late on Wednesday night from India. So  after much communication between all parties it was decided that in the interest of Karen's long term health that they needed to cut short the therapy by 3 sessions.  This now has her having her last treatment on Christmas Eve.  It was agreed that there would not be any compromise in the out come of the cancer treatment by shortening the treatment.  The real concern however was that if they continued they would leave Karen with some long tern ongoing side effects which could further reduce the quality of life.  As it is, I think we are in for a longer than normal recovery period.  Even though the radiotherapy stops on Monday, the side effect will continue to manifest for a further 2 weeks before we will see any signs of improvement.  So just another example of how God has been carrying us on this journey and never leaving us or forsaking us.  Just when we really thought it beyond us to get through another week of treatment, the light at the end of the tunnel become closer, brighter, warmer and more tangible.

So looking forward now to just enjoying Christmas with family and just forgetting all the dramas for a few days.  It will be nice not to have to travel into the RAH everyday as we migrate to weekly visits and in months to come, monthly visits and then 3 monthly visits to 6 monthly visits to yearly visits, but that is a way yet.  


Tuesday 18 December 2012

Rock Bottom

Just looked back on the last post and it has been almost a week since my last entry.  I normally like to do a Monday post with the latest photo comparison but Monday afternoon and evening was a write off.  Tuesday was even worse and here we are Wednesday already and my first chance to sit and string a few words together.  So a quick recap.

Monday reads like a tail of two cities.  Around lunch time Karen and I headed into my work place to see staff and thank them for all the things they have done thus far.  We were so surprised to see that there were even more gifts for us.  We were presented with a beautiful gift basket of Christmas goodies and also some pre loaded visa cards.  The multiple call centres in my building for the month of December had been running fund raises for us and we were again totally overwhelmed with the generosity of our Telstra family.  I will not mention the amount raised as I am a little embarrassed by the amount, but I can say what ever amount you might be thinking, you are not even close.  THANK YOU Telstra family.

We then left work for the treatment at the RAH that afternoon.  By the time Karen and I got to Oncology Karen was not well at all.  She had the shakes, a temperature and extreme pain in the mouth and skin around the neck.  The on duty oncologist reviewed her and it was decided she was not well enough to have treatment that day.  We then spent the next hour there in the nurses station being cared for and cleaned up.  They gently and meticulously removed as much of damaged skin and cleaned the raw skin and applied the purple stuff to dry and protect the effected area.  We were boarder line being admitted as inpatients that night, but managed to plead our way out of it. Fortunately her temperature was back to normal by the morning.  Tuesday begins.

Tuesday was the worst day of this whole process by far.  To complicate our already complicated routine, Nate was booked in for day surgery to rectify mild Hypospadia that he was born with.  (I won't go into the details of the condition so feel free to google it).  So I was at the Memorial Hospital from 7.00am and Karen was doing her regular RAH shuffle with her Dad in tow that morning as well.  This time Karen's treatment did go ahead with the prospect of trying to get through to the end of this week with perhaps another rest day on Monday.  With Christmas and Boxing Day break, this would give her a 5 day break.  These days are not lost, but will be added onto what was the end date of 28th of December.  Poor Nate was in a bad way and was in consolable for  the most part.  So last night was a long sleepless one while we attended to him about every 2 hours.  He is asleep now and hopefully feeling a bit better than yesterday.  Absolutely heart breaking to see him in so much pain and not be able to do anything for him.  So lots of tears in our house yesterday.  We both really feel like we have hit rock bottom.  Surely things cant get any worse.

Mondays pictures are a little gross, but it is what it is.






Thursday 13 December 2012

Rest Day

Feels like a Friday today.  The last of the school graduation nights was last night and the kids broke up from school at 12.30 today.  It  is officially, the school holidays have started.  A very close family friend also offered to do the hospital run with Karen this morning.  As much as I didn't want to leave Karen and be there for her, I really appreciated the day off from the cancer routine.  After dropping the kids off at day care and school respectively, Mum and I headed up to La Vera cheese shop so she could buy some cheese to take back to Townsville on Saturday.  After lunch I had the rare luxury of having a sleep for a couple of hours.  So I am feeling suitably refreshed.

Karen got the okay to continue treatment today and is set to be assessed again tomorrow.  If we can get to the weekend, then come Monday, the area that they are treating will be reduced down to the site of the tumour for the next 10 session.  It is still a very much day by day proposition and is solely dependant on Karen's state of health.  The morphine dosage has been increased to stay atop of the pain and frequency of the pain spikes.  Her skin is really taking a beating now.  It is blazing red and starting to break up and weep.  She has managed the feeding tube and feeding with her normal tenacity.  What seemed such a mountain last week has quickly become part of the daily routine.

So where to from here?  Mum heads back to Townsville on Saturday.  She has been an absolute blessing.  She has held the fort while we have spent a good part of each day at hospital.  She has cared for Nate and been home for the boys at the end of day.  She has helped out immeasurable around the house, taking care of all the little time consuming things that need to be done.  She has really taken away many of the burdens of day to day"stuff".  Come Monday, Karen's parents will be staying up in Adelaide to take the baton so to speak.  With out their help it would be a nightmare I am sure.  I have also extended my time off work, which will enable me to continue to care for Karen and the boys through until the end of treatment, which is a huge relief.  The thought of not being there for Karen is just one I don't want to consider.  1 day and 2 weeks to go!!!!!  Then the recovery......

Sunday 9 December 2012

Week 5 - Feeding Tube




Well, things continue to be pretty messed up.  I am not going to say a whole lot.  The photos kind of speak for themselves.  The usual, week 1 on the left and week 5 on the right.  The burning on the outside is now very sore and itchy, but still pales to the damage  on the inside.  It had come to a point where Karen was no longer able to continue to drink with out major discomfort, so the decision was made to insert a feeding tube.  Although feeling uncomfortable, it means Karen is now able to take in all the nutrients and medicines she needs without the pain.

Friday 7 December 2012

Bad to Worse

Well today capped off another week that just finished bad to worse.  I am really looking forward to the week when I can say that it went from worse, back to bad. We are waiting for the plateau of pain, but each week finishes just a little worse off than the previous.  This last week has been a real juggling act with pain management, weight and ulceration.  With the prospect of a feeding tube just 3kgs away, Karen has managed to maintain her weight just with the 4 cans of Ensure Plus.  Sounds easy enough but it has been a real struggle to drink that quantity.  The process of swallowing and talking is getting more and more painful.  It is quite scary to see how quickly the situation can change.  Only this morning at the Doctor Review, Karen commented that her throat was starting to feel sorer.  By early evening this had deteriorated to the point we were weighing up our options to head into the RAH Emergency.  The pain has increased to a point where Karen can not talk without great discomfort.  She is now passing me notes to communicate.  It appears there may be further ulcers down her throat making it more uncomfortable to swallow and in particular to continue to drink the Ensure Plus to maintain her weight to keep the feeding tube away.  The other main concern now is if some of her ulcers join up to become one large ulceration, then they will have to stop therapy to allow that area of tissue to repair before resuming.  So like I said, a real juggling act with consequences of dropping any of the balls.  Someone once commented that, "the trick to juggling is determining which balls are made of rubber and which ones are made of glass."  At the moment it feels like we were only issued with glass ones!

So based on this evening, our challenge is to get through the weekend without having to present ourselves at Emergency.  Ideally we want to get through to Monday when we can see one of the Oncologists and be guided by them.  Best case scenario is that things settle over night and tomorrow brings with it some relief and we are able to continue on.  However we are bracing ourselves for the real possibility of a feeding tube and potentially pausing the therapy or reducing the area that they are treating to allow her mouth to repair.

Its funny reading the previous posts and what we thought were painful periods.  They really do pale in to insignificance compared to what Karen is dealing with now.  This week we are both really done with it all, hitting that point of being physically, mentally and emotionally spent.  Next week being week 5 of treatment, we pray may be full of good news to share.



Monday 3 December 2012

Week 4

Week four sees us almost to the half way point.  We were feeling pretty buoyed after the weekend as the swelling and pain seemed to have subsided just a bit, but like most things along this journey we seemed to have underestimated the situation.  After today's treatment, the pain in the mouth hit back a fresh with new raw spots, Karen's nose is bleeding more and the swelling is about the same.  The Doctor has also increased Karen's daytime dosage of morphine.  He said at this point it is all about managing and reducing her pain and to try and keep her as comfortable as possible.  He said the side effects would continue to escalate for approximately another week before plateauing out until the end of  treatment.  Like on the eve of a prize fight, Karen has her weigh in tomorrow with the dietitian.  We are desperately hoping she has maintained her weight and will be fighting fit!  The incentive of having a nasal tube to eat has been a real motivator to down all the cans of goodness provided.  As per the beginning of each week, I have included the week 1 compared to week 4 comparison.  As you can see, there is now a definite red burn in the treatment area.  A very neat line across her throat and up over her chin.  Of all the side effects, although the most visual, this the least painful at this stage.

Week 1                                                                                           Week 4







Friday 30 November 2012

Week's End

Just a quick note to round off the week.  It's Saturday morning and the boys have been up for a few hours.  Karen is still asleep thanks to her new friend morphine.  After yesterdays appointment, Dr Gowda has increased her night time dosage and hence the increased drowsiness.  Apart from significantly reducing the pain, it does appear the swelling around her lips has reduced a little bit.  The sun burn on the skin has increased though, with a very definite line of burn.

Eating continues to be the issue though.  She has not had anything solid since Monday.  So she has been surviving on sustagen infused smoothies and 4 tins a day of Ensure Plus, a complete liquid meal.

We were given the bottom line from the doctor yesterday as well.  If she loses any more than 3.5kgs he will insist on a nasal feeding tube for the duration of the therapy.  Reason being the body uses all the energy just trying to repair the radiotherapy site and it has been proven that weight loss at the same time reduces the effectiveness of the body to do this.  So we are praying specifically that Karen will be able to maintain her current weight.  It really is the "Bizarreo World", where the dietitian tells her to eat as much junk food as she can and don't worry about fruit and vegetables, the dentist said don't worry about brushing your teeth anymore and the doctor says don't lose any weight.





Wednesday 28 November 2012

If You Have Poo, Fling it Now

After an earlier than usual wake up and subsequent bottle feed for Nate, I find myself lying in bed wide awake with lots of thoughts whirling around in my head about the last couple of days.  So thought I would get up and get a few of those thoughts out there.  A quick recap of yesterdays RAH visit and treatment.  We saw our oncologist who was very concerned with the side effects Karen is experiencing already.  He said that in his 14 years experience, the symptoms Karen is displaying usually doesn't present until the end of next week. It appears she is one of the few people he has come across who has a sensitivity to radiotherapy. He was most concerned about the level of pain and swelling in and around the mouth and throat.  He has upped the pain killers to 2 types of morphine for Karen to take.  One is taken every 12 hours as a slow release pain killer while the other type is for pain spikes and to be used as often as we need at our discretion.  As bad as it is, he wants to continue the therapy if at all possible.  The other options if the level of discomfort increases, would be to stop the therapy for a period of time to allow Karen's body to recover to a point where they could continue on again.  He and we are not a big fan of this option as it reduces the effectiveness of the treatment.  We are very much of the mindset to keep on.  We are a third of the way through and do not want to travel this ground again if we don't have to.  The other option he said would be to admit Karen as an in-patient for the rest of the treatment to manage her pain.  That too is also not appealing to us.  So at this point we are all in agreement to continue on as we are, dosed up to the gills, with her face looking like she has french kissed a bee hive and try and make it through to the end.  So each day continues to throw something new at us.  Bit like the scene at Grand Central Station in Madagascar.  One monkey saying to the other, "if you have any poo, fling it now."  So with each new day we really don't know what to expect because things change so quickly.

A few things that have really struck me about Karen and the treatment are, and in no particular order, How little I know about cancer and radiotherapy.  I have mentioned before about having preconceived ideas about what the side effects for Karen would be like.  I thought there would be some burning on the skin with some discomfort like a bad sunburn, a sore dry throat and some mouth ulcers.  In hi insight, that would have to be the most naive expectation.  I wont list the current side effects here now as it exhausting just thinking about it.  To give it some perspective though, a line that I think most of us Fathers have heard at some point, "Pain!  You don't know what pain is until you have had a baby."  Well, Karen informed me yesterday that having a baby is a walk in the park compared to the pain and discomfort she is currently in.

The generosity of people continues to amaze us.  We truly are blessed to have so many wonderful people praying for us and encouraging us.  We have had so many offers of help in a real practical way, whether it be meals dropped off or kids dropped back home when therapy clashes with school pick up. We have been also helped financially with gift vouchers to cover our fortnightly grocery bills and also petrol.  Our heart felt thanks to you all.  Thank you seems so inadequate a response.

Finally this morning, about my wonderful wife.  She is a "one".  Special.  Rare.  She continues to wake up each new day, putting the previous days pain and disappointments behind her and attack the new day afresh.  She does this with a will and determination I don't think I could muster.  She does this with little complaint or if she does, its is with her usual feisty attitude and humour.  Throughout all this she continues to laugh, giggle and be silly.    I love my wife and she is truly amazing!!!!!

Sunday 25 November 2012

11 of 33

Today marks a third of the way through the radiotherapy treatment and the 28th of December can not come quick enough.  I hate writing this blog with just more doom and gloom and increasing pain and discomfort.  I wish I could say things have plateaued and settled and the pain management is working a treat, but I can't.  Unfortunately things are getting worse and will continue to get worse for some weeks yet.  The speed and ferocity at which the pain and discomfort has intensified is a little scary.  Just in a matter of days it has really escalated.  Karen has a purple patch for about 2 hours directly after taking pain killers and numbing mouth washes.  After that, things deteriorate dramatically to a point where she is not able to speak or swallow without intense pain.  She has quite bad swelling around the lips, in her mouth and tongue.  This further complicates the actual radiotherapy procedure.  Part of the mask she has to wear when strapped down to the table had to be altered around the mouth to accommodate the swelling so it still fitted without cutting into her face.  She also has to have a (for want of a better word), putty ball placed in her mouth about the size of a golf ball.  This is so her mouth, tongue and jaw are in the same position each time.  Given her swelling, it is getting increasingly more difficult to actually open her mouth to then bite down on this ball.  So another day of tears as every new day seems to bring with it a fresh set of challenges.  

As terrible as this whole process is, there are certainly moments where we have been overwhelmed by people.  Without going into detail, today Karen contacted her work to advise them she was not able to continue on as she thought she might and would not be returning until the new year.  In turn Cedar College has been very generous in offering further assistance above and beyond anything we could of imagined.  On the same day, my Centre Manager also contacted me to discuss an idea she had to also assist us greatly coming into the Christmas period.  Again we were both overwhelmed by both offers.  Anyone who knows a little about us know we don't often ask for help and try to manage things as best we can on our own.  So a big thank you to both work places.

Please continue to pray for us and particularly for pain management for Karen.  It really is much, much more than what we were expecting and as mentioned, only going to get worse for a period of time.
Again I have done a photo of week 3 as compared to week 1.  It may not look like much, but you can just start to see the shiny red glow around the chin and neck and also the swelling around the lips and jaw line.  Maybe I am looking to much into it, but I think a little bit of the sparkle in her eyes has gone too.  

Week 1                                                                                             Week 3

Friday 23 November 2012

Exceeding Expectations

Well as week 2 of radiotherapy draws to a close, our expectations of the side effects Karen is having  now and to come, have been met and exceeded and not in a good way.  We had been told at the end of last week that week 2 is where the rubber hits the road.  The Oncology and Radiology Staff certainly don't sugar coat things and do tell it just like it is.  We have joked about Karen's taste going haywire, but that is an understatement.  We were under the impression, (our own), that things would just taste different or weird or even have a metallic taste.   In reality though,  the scenario is not that positive.  On Tuesday night, Karen lost her taste completely.  No recognition of any flavours at all.  So although we joked around at the table having dinner, later Karen was quite distressed and upset that she has no taste.  Could you imagine having a mouthful of food and only being able to feel texture, but absolutely no taste.  Certainly takes the enjoyment out of eating.  Really no incentive to get in and have a meal.  She now has to modify her compliment to me.  Instead of "thank you for the meal it was delicious" it goes more like, "thank you for preparing the meal".  I still am struggling to get my head around this one,  especially when food is such a comfort thing for us.

The pain has also increased tenfold this week.  The area effected is from the bridge of the nose to the base of the neck.  Although there is some tenderness and dryness of the skin around the wound site, the majority of pain is internal.  She likens her throat feeling like she is in the middle of the worst cold.  Oncology staff said to expect it to get sorer and likened it to having severe sun burn, but on the inside.   It is excruciating when she sneezes and on occasions this draws blood.   The inside of her mouth now is ulcerated with her teeth and gums being very sore and painful to brush.  She has a magnitude of rinses to use every 2 hourly as part of keeping her mouth clean and managing the pain.  She takes a liquid mouth wash local anaesthetic 15 minutes before each meal so she is
able to eat as the pain is getting to a point it is too hard to chew and swallow.  She takes a soluble panadol every 4 hours and has been told that within the next week or so that be upgraded to morphine as the pain will increase.  We also had an appointment with a dietitian today who went through the eats and don't eats.  How's this.  The first time ever that she has been told to eat as much junk food as she can and not to worry about fruit and vegetables too much and increase fats, cream, ice-cream, cheese.  Basically anything to maintain her current weight.  In theory it sounds great to get the green light from a health professional to eat all the "no no foods", but the horrible irony of it is that Karen cant taste any of it anyway.  So all in all a pretty horrible and emotional day.  Not a whole lot to look forward to as things will get worse substantially.

Praise Points
Thank you to a wonderful couple who regularly come and visit with us, chat freely, laugh with us, make us feel normal and pray with us.  It means so much to us and we look forward to your visits.

Thank you to the wonderful staff at the RAH who continue to have a smile and a kind word on every visit and with whom nothing is to much trouble.

Thank you for my beautiful and wonderful strong wife who even with all this happening to her continues to laugh and make our family love and laugh.

Thank you to our church family at Klemzig Community Chapel.  We are so blessed that God has directed our paths to this wonderful congregation.  Thank you for the tangible and not so tangible help and encouragement and prayers you guys have given freely.

Thank you to Dad and Mum.  For Dad who is doing a solo effort back in QLD while Mum helps us out in all the day to day stuff.  

Monday 19 November 2012

This Is The Week

This is the week!  We have been told by nursing staff, Head of Oncology and the Oral surgeon that by the end of this week of treatment, everything will come to a head, escalate, become apparent or fall in a heap.  So we truck into week 2 with caution and trepidation.  By week's end Karen's taste buds will be well and truly fritzed out!  The mouth ulcers will come and it will be a case of just trying to manage them rather than trying to rid them.  The pain in the mouth and throat will escalate to a point of requiring pain killers and the list goes on.  As it turns out, (and I knew this already), I have a very special wife, in that she is already displaying many of these symptoms already.  Clever girl.  I have included in this blog a comparison photo of beginning week 1 to beginning week 2.  The redness in the neck from week 2 is more a case of Karen's skin reacting to the Sorbolene Cream and rashing up on the effected area.  I refer you back to my comment, I have a very special wife.  We will be speaking with staff this afternoon about the reaction and hopefully move to a different moisturiser.




















        Week 1                                                                                      Week 2

Outside of our daily trip into the RAH with times varying between 9.00am and 5.00pm our days roll on.  Life hasn't stopped and we are stilling dealing with the everyday demands as before as best we can.    Centrelink yesterday was a huge disappointment, having spent many hours on the phone with them, then collating all the required information, photo copying, GP appointment to fill in the medical report, assets test, then waiting in the office for 40 minutes to be seen.  Finally we sat down with a consultant only to be told within 5 minutes that we will not qualify for any assistance.  Could of told us this on the first call and saved us and them valuable time and energy.  

Not feeling quite as dark as last Friday, but still, (as we both are), finding it hard to get too happy over anything at the moment.  It sounds doom and gloom but being happy at the moment is just not the default setting.  That's not to say there are not moments of laughter and the usual silliness in the house, but they get quickly consumed by what we are dealing with.  Cancer certainly steals the joy!

Friday 16 November 2012

Black Hole Sun Won't You Come And Wash Away The Rain

Week 1 down and feeling pretty dark about the whole proceedings.  Really hate what is happening and what it is doing to our family.  A necessary evil?  I will be stronger for this challenge?  Really?  Not feeling it at the moment.  Was a lot more happy in my weakness.  Those previous sayings just sound like meaningless cliches.  It's right up there with people who say it's good luck if it rains on your wedding day.  Again, really.  Surely the only people who say and believe that are those who got rained on.  Still, it was a fine day when we got married and look where we are now...maybe there is something in it.

Up until this week it felt like Karen and I were doing this together.  Even though she has the cancer, we  were in it together.  However this week, I have felt us drifting apart.  This is a hard one to try and explain.  Not drifting in a loving relational sense, but more in a physical and emotional sense.  She and I are obviously going through different things.  In only 5 days, I have watched on helplessly as Karen's body starts to show the signs of radiotherapy.   The redness around her neck is now visible.  She has the start of sores around the bottom of her gums.  She is very tired and usually sleeps the trip home in the car and then some more when we get home.  We jokingly comment on facebook about the lack of saliva and her dry mouth and the use of an artificial lubricant, but the reality is this will be the case for the rest of her life.  It absolutely kills me to see this happening and not be able to say or do anything to ease the situation.  What do you say when someone comes out of radiotherapy session?  "How did that go?", "Was it as bad as yesterday?", "That was quick", "Are you ok?"  Sounds pathetic.  So although I am there, I have no idea what Karen is going through, I have no idea how she feels, I just feel so totally separated.  It is happening to her and I wish I could take her place.  It really sucks!

So on top of this, there is the Centrelink forms. Karen had a GP appointment this afternoon to have some medical forms filled out for Centrelink.  Nothing like seeing in black and white terms and words and phrases about Karens cancer like, terminal, outcome uncertain, high mortality rate.  So with these thoughts swirling around in my head we head into the weekend.  A 2 day break of rest and recreation, (hahaha) before we start the process all again, all the same, next week and the following week and the week after that and so on.  Looking forward to doing my laps at the Aquatic Centre tomorrow morning to try and wash some of this muck out of me through some exercise.

For those of you who may not be into the music thing, the title of this post is from Soundgarden's Black Hole Sun.  Cool band and song if not a little bleak, but does suite the occasion and the mood I am in.

Wednesday 14 November 2012

Ground Hog Day

I think you know where this one is going.  Day 3 and not too many surprises.  The treatment process is certainly a well oiled machine.  We generally leave 45 minutes before our scheduled therapy.  This gives us time to drive into town, find a park either in the Wilson Parking high rise or along the fence that borders the botanical gardens.  There are 16 parks that have been reserved for Oncology patients and so far we have had no problems getting a park.  We then check in with reception who confirms name and date of birth with Karen.  If I ever forget Karen's birthday after this there is a problem.  We get the following days appointment time confirmed as although we have a time schedule for the whole period, the day to day times will change at short notice.  Once this is done, we make our way down to the treatment room waiting area.  We exchange small chit chat with each other, check out the other competition for the day and politely nod to those we saw the previous day.  Karen is then called and taken out back to be blasted whilst I wait in the....wait for it.....waiting room.  I pray for Karen, then get out my Iphone and check Facebook.  Once that is done, I go to the app game, Road Trip 2 and do my thing for 15 minutes or so.  Karen comes out, we head back to reception, sign a form, head back to the car and  head for home.  I would have at a guess that day 4 through 33 will be much the same.  So it is a bit like Ground Hog Day, but just without the fun bit of messing with people.

Todays quote is not from the Bible, but instead the book of Bon Jovi.


Ohhh, if there's one thing I hang onto,
That gets me through the night.
I ain't gonna do what I don't want to,
I'm gonna live my life.
Shining like a diamond, rolling with the dice,
Standing on the ledge, I show the wind how to fly.
When the world gets in my face,
I say, Have A Nice Day.
Have A Nice Day.

Monday 12 November 2012

Day 1

Not really sure what to say about today.  We have been waiting for so long for this day, (not in a good way like Christmas or a birthday), but more a day you just want to get to because the quicker it comes the quicker it is dealt with.  So as much as we thought we were ready for it, having had to wait the almost 6 weeks and in our own minds preparing for it, how wrong we were.  Nothing like being bitch slapped by reality to bring you to your senses in the here and now.

With Nate being looked after by Mum, we drove into the RAH.  Parked in the Wilson's car park.  Yes we have free parking for the next 6 weeks.  Thank goodness, as based on today if we were to pay we calculated that we would be out of pocket by around $400 by the end of the treatment.  Everyone at the RAH was so friendly and helpful.  That would be a hard gig to do day in, day out given the patients I saw wondering around.  Potentially a morbid place, but that was not the case.  After the necessary initial paperwork and confirmation at reception we then had a one on one with a nurse who, again just went through the process and what we were to expect short term and long term.  This was then followed by the treatment.  This involved Karen getting into her face mould, which was then anchored to the table which she was lying on.  They then proceeded to take and confirm measurements to ensure she was positioned correctly.  Everyone then left the room while the dosage was administered.  This took all of about 10 minutes and we were all done.  This will be our routine until after Christmas.  We were advised today that the therapy had been extended by a further week to take us through until the 28th of December.  

I have included a number of photos.  One is a front on face shot of Karen, which we will take weekly so we can record any skin reactions or burns over the period.  The other 2 were of the mask and radiotherapy machine used.  I will say as a side note that I was not very comfortable taking the photos.  Karen wanted it to keep a record.  It felt quite macabre to be taking photos of Karen like this.

I pray that each day it might become a little easier as we progress through this time.  I pray that we might not burden Ryan, Matthew and Nate's hearts any more than we need to.  I pray that as the head of my house, I might be a comfort to Karen and the boys and God will give me the right words to say and prompt me to take the right actions in his perfect timing.  Ultimately, I pray that this treatment would be completely successful and rid this cancer from Karen.  Amen.
 



  

Saturday 10 November 2012

The Last Supper

Well here we are on the eve of destruction.  The destruction of wayward cells.  Radiotherapy starts tomorrow after what seems an excruciating wait.  Mum arrived on Friday and has already been busy helping around the house.  In fact I feel a little guilty here blogging away while she tackles the family ironing, but there was no convincing her otherwise.  We have been pretty quiet this weekend, contemplating next week and really not to sure what to expect.

We have been told there will be a whole range of side effects that Karen may get to varying degrees.  The nature of radiotherapy is the destruction of cells in the effected area.  It is non discriminate; that is, it will kill the cancer cells and also the healthy cells.  The healthy cells being those lining the mouth and tongue including the taste buds.  Fortunately this is not permanent, but we have been advised this can last several months after the treatment has finished.  So before Karen's taste goes weird, we needed to bring in the ultimate of comfort food.  Roast chicken with roast veg and gravy.  Can't beat it.  This was followed by a date and toffee pudding with ice cream. Yum!

So from tomorrow at 10am at the Royal Adelaide it all starts.  I guess as a positive if I cook a really crappy meal one night I can off load it to Karen and it wont make any difference.

Tuesday 6 November 2012

It's About To Get Real

So just over a month since we were told of the cancer and it is about to get very real.  I have finished up work until the first week of December.  This in part is because I was just not able to cope with the stresses of work and also what we are dealing with as a family.  So I made the decision to finish up a couple of days early so I could concentrate my energies on more mindless tasks around the house.  Although mindless, they are tasks that I feel are more helpful than being at work.  I think I need to feel that I am helping in some way even if it is just around the house.  The other reason is that I want to support Karen as much as possible with going to radiotherapy especially in the first weeks as we come to terms with the treatment and find our routine.

Up until now, at times it just hasn't seemed real.  In the last four weeks although we have talked about it and shared lots of tears, a lot of times, I still am thinking, "is this really us, is this really happening".  Still waiting to wake from the bad dream.  So as the wait has gone on, the tears have dried up and the numbness has set in.  Gone is the shock and unbelievable feelings and replaced with the numbness and fear of what is to come.  Sometimes I feel like a little part of us has died inside.  Maybe it is just in hibernation and come a new season will flourish once again.  I think the start on therapy will bring with it the realisation that this is real.  This is happening to us.   This our next step.  One that we willingly take as we want to see this season through and come to a new one.   



Saturday 3 November 2012

Waitng

I know Karen has made mention in her blog of the waiting, but thought I would just touch on it as well.  I know the wheels are in motion and the cancer therapy juggernaut and everything that goes with it will shortly have life  breathed into it.  To put it into perspective though, we were told on the 4th of October that Karen has cancer.  From our perspective nothing of any real consequence has happened since then.  Yes we have been to many doctor and specialist appointments in the interim, but in a real physical sense, nothing has changed since the 4th of October.  My inner voice is screaming to move things along.  Where is the sense of urgency!  In my mind this monster in Karen is intensifying in strength and gathering speed and spreading to who knows where.  My rational side tries to reason that this thing has been in Karen for probably quite some years, so whats another 6 weeks going to hurt.  The reason given that we haven't been able to start radiation therapy is that Karen's wound needs to heal a bit more before they obliterate anything in that region again.  So the 12th of November begins "D Day".

As most men are, we are the fixers.  What's the problem, what do I have to do to resolve and fix this for you right now.  We are not good at just listening and waiting.  It is the most helpless and desperate I think I have ever felt.  Seeing my wife and all her fears and anxiousness and not being able to do anything to make it better equates to a failure on my part.  I know there is nothing I can do but that's the feeling.  The waiting is a demon in its self.  It is very hard not to dwell and entertain best and worse case scenarios and everything in between.  So in short, I have been a bit of a mess over the last month.  I am particularly hard on myself because I think this is the time that Karen really needs me to be strong for her and our family.  An extra measure of guilt on top of everything else to deal with.  Karen has commented that she  has read that it is often more difficult for immediate family members than for the person who has it.  I think there is some merit in that too.  I am hoping that once the focus actually shifts to the daily radiation therapy, I will be the support Karen needs and she can lean on me.



Thursday 1 November 2012

An Advocate

There are a few words that when uttered, immediately bring up fear, loathing, horror and the list could go on.  Cancer is one and another is Telstra.  I think most of us would have a Telstra story to share.  I know because I am on the receiving end of approximately 30 stories a day and have been for the past 18 years.  Yes I work for Telstra.  I have been doing call centre work for them in various locations around the country doing various functions.  At the moment I take calls from people who are wanting to cancel their home phone, Bigpond or Foxtel or any combination of the 3.  So believe me when I say, I have heard them all.  As an employee over the years, I have had my fair share of grizzles and grumbles about what we have to do and the way we have to do it.  The work is mentally demanding and high consistent results are an expectation of the job.  So it goes without saying there is a degree of pressure and anxiety to achieve each month.  Having said all that and in our current situation I could not have asked for a better employer!

When I told my centre manager of Karen's cancer, her response was "what can we do.  What do you need of us."  They have accommodated days off that I need to accompany Karen to appointments.  They have reiterated that this is just a job, and of course we have financial commitments, but our family comes first.  So in the ensuing days where I have struggled to be present mentally they have been very accommodating and sympathetic.  A big thanks to my centre manager who checks on me daily, always with a smile on her face making sure I have everything I need while at work.  They have made leave available to me, so that I can take time off to be with Karen during radiotherapy.  So there isn't anything they have not done to help.  Thank You.

So in closing, next time you have to ring Telstra and possibly do battle over a bill or a service, just remember there are people just like me on the other end of the phone.   Telstra is an employer with compassion not only to their staff but to their customers. So next time you have the urge to ring and rip them a fresh one, just pause and think, "Hey, they looked after Karen and Steve".  Maybe they're not so bad.

Wednesday 31 October 2012

Mixed Emotions

Anger - a strong feeling of displeasure and belligerence aroused by a wrong.
A pretty strong emotion that if not kept in check causes all sorts of messed up thoughts.  At the moment this is my biggest hurdle in getting through a day.  It aims to detract from my faith journey and undermine the very basic day to day activities and interactions.

Anger I get.  Yes I am angry this has happened to Karen and our family.  Who wouldn't be.  The roll on or ripple effect of so many different scenarios and outcomes is huge for now and years to come.  I am not looking for the reason why.  The age old question that if God is a God of love then why does he allow bad things to happen to people?  I am not looking for an answer here.  I am confident that God has it all in control and that is not for me to worry about.  If he feels I need an answer, I am sure all will be revealed when I am with him.  However that doesn't mean I am not angry at God.  At the moment it is a battle to spend time with him, to come into his house, to read his word and sing his praises.  This doesn't mean I love him any less or I have lost my faith.  More a case that I just need to have some space and time before I allow him back.  In the simplest form, it is a bit like having a fight with a family member.  They may do and say some things that you disagree with and make you angry.  Your reaction might be one of just needing some space and time, to let the dust settle.  You don't  love them any less, but right at that moment you don't want to be with them.  I can say things are improving on this score.  After a couple of weeks hiatus at church I have been back with a better heart attitude.

As for people.....EGR.....Extra Grace Required.  Some people seem void of that social compass and continue to talk about things that are upsetting.  (If I hear one more cancer story I think I will scream).  To be blunt, I just don't care at the moment.  We are living our own little nightmare story real time.  When we say, " we don't feel like talking about it and can we change the subject", we mean it!   That means you, not somebody else, it does not give you licence to keep on until we are visibly upset.  If we want to talk about it and feel we can, then we will, but please don't think us rude if we shut it down either.  Are you beginning to sense today was not a good day for us?  Praying for more self control and patience tomorrow.

Monday 29 October 2012

Drama or Drama Queens - A Bit About ACC

It's funny that while you don't have to, you know so little about cancer.  However when it strikes your immediate family, it opens up a whole new world you never really knew much about.  If you are lucky enough, your experience with cancer may be somebody you know of, but that sort of thing is not meant to happen to you.  Since the "Zanker World" and the "Cancer World" collided on the 4th of October we now know a bit more of what we are dealing with.

Adenoid Cystic Carcinoma, or ACC, is a rare form of cancer generally found starting in the saliva glands, but  can also originate in 38 other organs, glands or other places in the body.  Of a study done in America over a  10 year period, there were (round figures), 500,000 reportable cases of cancer of which ACC made up just over a 1,000.  It's is described as being initially slow and gradual in its growth, however once growing is insidious, aggressive in nature and relentless.  It does not respond to chemotherapy and when it returns it generally will reappear in the lungs.  It does not use the lymphatic system, but rather travels through the nervous system.  There is no other way of saying the outcome of treatment and what the reality of this cancer will be.  As much as you want to be positive and put on the rose coloured glasses, the black and white of it is grim. We are optimistic that it will not return in 3 to 5 years.  Unfortunately as the years go on, studies have shown the chance of it returning is greater than 60%.  This not to say that some people have gone on to live to a ripe old age.  Our intention is to be "those people".

So Drama or Drama Queens?  All I know is there is a very real possibility that I will not have a wife at my side and our 3 boys may not have a mother.  I know that is the case potentially for everybody, but it just seems to me that it is more than an unequal playing field for us right now.  So when people ask, "how are you going", I lie.  It's easier for me and them too I think because the reality is I am not fine and it is taking every part of me just to be in present, to not entertain the 'what if" scenarios, which at the moment are all consuming.  I am praying this feeling will ease and pass, but at the moment as Karen describes it, we have a ticking time bomb and we just don't know when and if it will go off.


So what now while we wait.....Philippians 4:8

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy -think about such things."

We Are Not In Control

Have you ever sat in the passengers seat of a car and felt like you were in control.  I know I haven't.  In fact some of my most terrifying rides have been from the passengers seat.  Can you relate to just how helpless you feel as you hurtle down the road, trees and other cars a blur, wishing you could swap seats and take control of the situation, put the brakes on and come to a halt.  Bring things back to "your normal", safety and security that you desperately want.

  My wife Karen was diagnosed with a rare form of cancer in the throat 3 weeks ago and that is how I feel.  Our safe secure life that we have built up around us has been obliterated by one single word, CANCER.  I definitely feel like I am in the passengers seat.  Absolutely helpless to do anything.  In a world where we are constantly told by advertising and other that it's all about us, that we need to take control of our lives, that we have the power to change things, blah blah blah and all the other cliches about self this and self that, one word, cancer, certainly to me highlights that we are NOT in control.  Dont mis-interpret this for your outlook on the situation.  By all means be positive when you can, but that will not change the fact that you have cancer.  

When I became a Christian 9 years ago, Proverbs 3:5 quickly became a favourite and I still hold on to this daily.  Even more so now.  It reads,

"Trust in the Lord with all your heart, And lean not on your own understanding: 6 In all your ways acknowledge him, And he will direct your path."

Its hard to do.  Basically give up thinking you are in control and trust God.  There are things happening all around that just don't make sense.  Don't try and understand them because we are not privy to Gods bigger picture for our lives.  We just have to acknowledge this and he already has our path laid out.  He has had this path laid out before we were even born.  That's all I can do, Trust in the Lord.  He is in the driver seat and we are all just passengers.  We may find the journey still terrifying at times, but the destination is definitely worth the ride.

To my non Christian friends who know me, my intension is not to preach to you, but more a case of just explaining to you where I am at and what I believe.  I don't often put my faith out there in your face verbally as that is not the way I am.  Having said that though, you have visited my blog so put up with it.  I will just say that the idea of this blog is really just a form of passing on information about what is happening about the caner with Karen, the treatment and how we are coping.  So please come back to see what the Zanker's are up to.