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.

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!!!!!

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

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.  

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!

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.

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.

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.

 



  

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.

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.   

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.

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.