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.

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.  

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.

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......

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.

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.

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