Post Number 19 - Life Goes On

It's been over about six weeks since my last post and life is still quite a rollercoaster ride. Our 5 day get-away in Normanville was perfect.  Just being away from home (but not far from home) and near the fresh sea air was pure paradise.  It was hard work getting everything packed into the car, including a couple of bikes, but we made it.  Mark spent the first two days without much energy and not participating in many activities, choosing to stay back in the accommodation while Sebastian, Else and I headed for the beach.  But by day three, he started to feel better and we enjoyed some quality family time together while searching for crabs, enjoying nice cafés and a day at the beach.  We all came home refreshed and recharged and ready to move ahead with our lives.

Once home again, Mark started doing a little work for one of his clients.  At first it was mainly planning meetings, but that then turned into writing code.  Before long he found he could work for two hours a day which soon increased to two and a half and then three hours a day.  Things were going great; some income finally coming in, Sebastian’s behaviour still manageable and myself in a reasonably good place mentally and physically.  We started going out more, socialising a little more and doing more things as a family.  I finished a very old project which I had started in 2006.  A book I had written about carrying out Jury Service and how it had affected and changed my life.  The six weeks on a murder trial took me out of my day to day routine and through this experience, I reassessed my life and moved it into a direction that made me happy.  I completed the last set of edits, added pictures, reformatted, printed and bound the book.  It will never be published as it is very factual and includes all the names of the council and the accused as well as newspaper articles and the final sentencing from the judge.  This book is a legacy that I will leave to my son.  Something he can read when he is much older, or maybe when I pass to another world.  Something to remember me by if you will.

At Adelaide’s Festival Fringe time I decided some adult time together was in order and booked a couple of comedy shows to go to.  I know we don’t laugh enough, I guess we are just serious people?  The shows were great and getting to the events seemed to fall into place without too much stress. 

Thinking life was finally on the up and up, I was surprised one day when Mark told me he was really really tired and couldn’t face sitting at his computer.  After breakfast, I tidied up the kitchen and found him asleep on the couch.  He spent most of the day there.  The next day the same thing happened and this continued for days.  Admittedly, the weather was hot and we were experiencing a heat wave, but there seemed much more to it than that.  Day after day, he struggled to get out of bed and make breakfast before either lying on the couch or on the bed for hours at a time.  His appetite was also affected and although he would eat, each meal was a struggle for him.  It felt like the period just after he came home from hospital when all responsibilities were on my shoulders.  I was starting to run down again and also struggled to face each day, until day eight when things started to look a little better and Mark started to brighten again.  A visit from his father and brother also forced him off the couch and lifted his spirits.  Just having someone (in particular, a male) to talk to, seemed to help and each day he started to improve again.

Friday 22^nd March and it’s now been five months since the operation and time for his first MRI Scan since the tumour was discovered.  The scan was scheduled for 7.45am and we decided it would be best if he went with this father to the hospital while I took Sebastian to childcare in the city.  He seemed in good spirits, maybe a little anxious about getting there on time, but otherwise ok.  We had talked on several occasions about the scan and as it was just a routine process, there was nothing to worry about.  This scan is what they call the “baseline scan”.  It is the scan that will be used to compare future scans with.  As the tumour has been removed and the swelling has gone down, there should be nothing to see on the pictures but healthy tissue.

Since the scan however, Mark’s mood has been sombre.  He has been unusually quiet and distant.  It seems the scan has prompted thoughts of “what if?” and “how does it look?”.  With Neuro-surgeon and Neurologist appointments not even scheduled (not something I can do), it may be a very long time before we have any real details about what the scans show.  We do however have an appointment with the Radiologist Oncologist in two days and hopefully she can shed some light and give Mark the assurances he needs to bring him out of his dark place.  At least I hope so, as we are off to Sydney the next day for another five day holiday.  This was something that was booked around nine months ago with the German Dance Group which we no longer attend.  With flights and accommodation already booked and paid for, we decided we would still make the journey and treat ourselves to a little fun in the “big smoke”.  Here’s hoping anyway!

It’s still so difficult to plan anything in advance.  It seems we are still a way off from putting this entire trauma behind us and moving forward.  I have also been re-evaluating my life and what my next chapter will be.  With Sebastian starting Kindergarten at the end of the year, he will be in school before I know it and I wanted to have a plan or direction for what I might do when this time comes.  Working in IT is something that I gave up many years ago (around the time I wrote my book) but a work opportunity presented itself when Sebastian was still very young and it was a much needed chance to resume some type of position in a workplace.  When I first started it was all great and the company I worked for loved the work I did and always seemed to appreciate my efforts.  But as the years passed, one project I completed last year went sour.  Repeated requests from me to test the system went unheard, so I completed the entire project – untested.  They then went ahead and went live with it!  Not long after, it went pear shaped and management were furious at me for not delivering what they had expected.  I had nowhere to go, their requirements not possible with the current technology or software they had invested in.  No amount of discussion was going to change the situation and communications seemed to stop almost altogether.  I called a meeting to see if they wanted me to continue working there and all three managers assured me that they were all just really busy and didn’t have time for IT projects or plans.  

Thoughts of quitting flowed through my mind for months as I am the type of person who puts 100% into everything I do, and without job satisfaction, there is no point.  When everything happened with Mark, we discussed eliminating everything that caused us stress or did not give us satisfaction or joy.  This job did not tick any box and the final straw came when yet another one of their very old computers broke down.  While they did not come outright and say that they expected a replacement by the next day, I knew they would be furious if nothing was in place when staff came in to work the next day.  So, with young boy in toe, I purchased a new machine and went home to start configuring it.  But this new machine was the new version of Windows which brought with it a series of complexities.  Hours later, I ended up putting Sebastian in front of the TV so I could get some peace and quiet.  I then noticed Mark lying on the bed, feeling overwhelmed from the stress of getting data from the old computer onto the new.  We argued about what could be done and hours later I knew that this job had to go. 

I delivered the machine the following morning and came across a few more issues which I thankfully could resolve without Mark’s help.  I left the office, had lunch with my boys and immediately wrote my resignation, followed by a very detailed document outlining the configuration of their network and the quirks of their specialised business critical software which had caused us no end of stress over the years.  I was determined to do the right thing and ensure all my loose ends were tied off and I could walk away knowing I had done my best. 

Stomach churning, I had no clear idea of when I would sent the document and resignation and thought maybe I should just replace their last remaining old machine which was a business critical one before I walked away for good.  But as the phone rang that afternoon, I soon realised that I would not have to make any more decisions as the business owner had rung to tell me that she thought the relationship would no longer work.  I quickly told her of my documentation and letter and before long it was sent through and I was free of this job and all its’ stresses.

I still shake about this situation as I now have no means of contributing to the family income which was my only reason behind not resigning sooner.  But since shedding this baggage, I am starting to feel lighter and starting to see a new career path emerge, one that is a long way from IT and closer to my passion for good health and healthy cooking.

Post Number 18 - Flat as a Tack

It's been several weeks since my last post and life has continued much the same; take one day at a time, plan very little, expect not too much!  I must say life has certainly slowed down to a grinding halt and it just goes to show, busyness makes time fly away and in a blink of an eye your toddler became a child and is making decisions for himself, dressing himself and testing every inch of his parent's patience, love and stress levels.

Mark's recovery has been going well and he began the process of coming off the Dexamethazone.  It has needed to be a slow process as his body has become used to the drug and stopping too suddenly could see him having symptoms of headaches and possibly seizures.  But with the aid of sleeping tablets, he has been managing very well with only slight symptoms of tightness in the head.  He did however, go through a point of feeling like the tumour was coming back and had headaches, tiredness and even a slight numbness down his left side.  This we were told, is quite normal and not to panic too much as it is part of the healing process from the radiotherapy.

Sebastian however, has been more than a handful to manage and my stress levels had been rising daily and I was becoming more and more run down each day.  I was thankful that Mark had been feeling better and able to help me with Sebastian as I came to a point where just getting out of bed was a massive task.  I tried multi-vitamin tablets and forcing myself to do exercise but nothing worked.  People told me that it was just my body catching up after all the stress of the last three months and while this may have been true, I knew I could not continue this way, so I made a trip to the local GP and asked for a blood test.  The results showed that I had low iron stores and although my body had enough iron, I had very little in reserve.  Of course the doctor put it down to our "Plant Based" diet and suggested I take an Iron supplement.  I was convinced however, that vegetarians DO get enough iron in their diet, providing the diet is varied and contains lots of different vegetables, beans, nuts and grains, so I ignored his recommendations and "Googled" instead.

My suspicions confirmed, I began taking vitamin C tablets to help my body absorb iron better from the foods I was eating.  A trip to Mark's Naturopath also helped and I was given some more tablets to take.  We had also recently completed a "Hair Sample Test" which involved taking some hair from close to the scalp and sending it off to a laboratory for testing.  Apparently your hair can tell a real story about what is going on in your body, including levels of minerals, heavy metals and much more.  I was shocked to see Arsenic appear on Mark's results and Aluminium readings on my results as well as really high readings of Copper.  Although none of the levels were of a dangerous level, it was still a surprise to know what is floating around and stuck in the tissue of our body.  As if changing to a plant based diet is not enough, we now try to avoid aluminium based deodorants and non stick cookware and try to buy organic produce where possible.  We have also been given a range of tablets, powders and potions from the Naturopath to eliminate any toxins and bring all levels back to a normal and healthy range for optimum health.

Less than a week later and I am finally feeling well and strong again.  While I am not 100% yet, I feel alive, happy and able to get on with life.  This week has been particularly good with Sebastian's behaviour finally back to what we know and love.  His attitude had been so off the scale we were both at our wits end.  Nothing seemed to work; punishments, timeout, removal of toys, banned from Wii games, banned from iPad games, cancelling activities and I'm even ashamed to say, smacking!  Every day was a battle of wills and again, people told us this was quite normal for a three year old. 

Each week the situation got worse until one Friday (Childcare Day), it really hit the fan!  He refused to put on his shoes or get in the car as he was "NOT GOING"!  We talked, threatened, yelled and forced him into the car.  I'm sure the neighbourhood heard the commotion and eventually after 20 minutes of fighting in the carport, he was strapped in - TIGHTLY!  He screamed all the way to the city and we took him in.  He was transitioning into the Kindy Room and was not happy about it.  Knowing that he dislikes any kind of change, we knew that we just had to push him to give it a try, just like everything else he has been scared of trying or doing.  It was exhausting and after staying with him for 15 minutes, the teacher finally asked us to leave as it was disrupting the room.  As we walked out the building, we could hear him screaming out, but there was nothing more we could do for him.

When we picked him up that afternoon, he was the happiest boy on the planet and I swear he grew an inch!  He was so proud of himself and showed me all his work that he had done that day.  He was so happy, he didn't want to leave!  This is so typical for him, a whole lot of unnecessary drama. 

Just when we thought his behaviour couldn't get any worse, IT DID! Sunday saw us at a BBQ out the other side of town.  It was a long drive and Mark seemed up for this social event (one of the very few social activities he has done since everything happened).  It was a great day and all the circle of friends attended, first time for years that everyone was together.  The children all played and had a great time, but when it came time to leave, Sebastian was not keen (typical of his new style of behaviour) and we braced ourselves and carried him out, thankful that he did not make a spectacle of himself.  Amazingly, he did not fall asleep on the way home until we were just around the corner and 2 minutes from home.  I tried waking him but he was out.  Once home he woke and went about his usual play until the evening routine.  In bed, showered, teeth brushed and stories read, we relaxed thinking he will be out like a light, but to our surprise he bounced straight out of bed and refused to go back.  My blood boiled and no amount of anything would get that child back to bed.  All toys were taken away, as was TV for two days as well as all activities and then the clincher...HIS BLANKIE!  Taken away and put on the top shelf in his room.  He could see it, but not reach it or cuddle it.  Eventually, an hour and a half later, he cried himself to sleep with no blankie or bed toys. 

I was totalled.  My nerves shot, my hands and body trembled for 3 hours and a migraine started to rear it's ugly head.  Next morning, he awoke at 6am, typical of a late night.  With no TV to fall back to, he was forced to play with his toys (the few that he had left).  Expecting another tantrum, we were amazed when he just went off and started to play by himself while we tried to get a little more sleep.  Surprisingly, we managed the whole day without any electronic entertainment and a new child started to appear.  That night he was allowed his Blankie but no other toys were asked for or offered.  That night was blissfully quiet and it was 7am before we heard him running down the hallway for his morning cuddles.  Once in bed he said "Think I can have one of my toys back?".  It was spoken in such a sweet and kind tone, the way he used to be.  I hugged him some more and told him he could have two toys back, one for going to bed on time and one for staying in bed until 7am.  Considering he had lost around 20 toys, I was amazed that he thought this to be a great deal.  When he asked if he could watch some TV, I gently suggested he play with the toys that he chose to have back and he happily agreed. 

Day three and it was a really hot day and again when asked to watch TV, I suggested he might like to watch a movie later that day.  He was excited and the deal was done, after lunch, he could watch a movie.  Day four and he was able to play some Wii games but no other TV. And today is day five, Kindy Day, and although there was a few minor comments like "I don't want to go", when I reminded him of what a great day he had last week and the agreement we had. He happily attended, kissed me goodbye, collecting his workbook to start doing some drawing and colouring.

I am just amazed at how this beautiful butterfly has emerged.  Sebastian has never been allowed to watch huge amounts of TV, only an hour in the morning and the same in the evening.  The rest of the day the TV is switched off.  Console games and iPad games where only offered a few times a week, which I believed to be quite reasonable.  Was it the removal of Blankie or removal of the electronics, we may never know.  But what we do know is he has never been happier and his creativity has never been better.

Just when I thought I couldn't be happier, I received the phone call that we have been waiting 16 weeks to receive.  The Insurance has finally been approved and we will be receiving a cheque in the mail next week!  This was the lump sum payment that was supposed to get us through our life when we had no other income.  And tomorrow we head off for a short 5 day beach holiday in Normanville.  I have my son back, I have my husband back (dex free as of today), I have my energy back and we are all getting AWAY from it all (dog included), even if it is just for a short time, we can finally RELAX and be HAPPY!

Post Number 17 - The System

Today marks the anniversary of Mark's Surgery.  Three months ago today I was at the hospital at my husband's side, awaiting the arrival of the solicitor to bring all the paperwork to sign, in the event that Mark may not make it out of surgery!  That is very hard to think about or even write.  To think that I hugged and kissed my husband, not knowing if that was for the last time.

But here we are, three months on and I still have my husband and I still feel that greater force is looking out for us.  Even with this force and our faith that everything will work out fine, there are so many moments when you are tested, pushed beyond what you think you are capable of and left feeling like it's all too hard as you sit in your puddle of tears.

One would think with the surgery out of the way, and then the Radiotherapy finished (the longest 7 weeks of our lives), it would be much smoother sailing, and all you would need to do is heal, recover, relax, meditate, yoga.  What a lovely dream...until you are whacked hard with the 4x2 reality stick!  We thought we would be all ok financially because we had our mortgage protection insurance who would pay us a lump sum as well as pay our mortgage payments each month.  Again, the reality stick whacked us hard when we were told they would not pay out.  Another blow to the head came when Centrelink also rejected my Carers Allowance and then advised us that we had enough funds in our bank account so they wouldn't pay any Sickness Benefits until the end of January! 

So now we are Battered, Bruised and Broke and feel like we have been punished for being financially smart and careful with our money.  And if that isn't enough, the insurance company want us to fill in a four page form as well as another four page form for a doctor to fill in, every single month, before they will pay the next mortgage payment. 

These forms are so degrading and make you feel like you don't deserve to take any time to recover.  Mark only finished Radiotherapy last week and still they require us to go to a doctor to fill in these awful forms which question when he will return to work and what he is doing to prepare himself for work and why is he not preparing for work and what date will he return to work....it just went on and on and on.  This is now the third time we have done this form and next month we will have to do it all again.  And then Centrelink, who are yet to pay us any money at all, want the doctor to fill out the Sickness Benefit form again also.  Another six page form with all the same sort of questions. Why I hear you ask?  Because it has been 12 weeks since the operation, so I guess he must be good to go then!  Best make them fill in all the documentation again to be sure that he is not trying to cheat the system!

Radiotherapy finished last Friday and it was a time for celebrating.  Sebastian and I made cookies and “Thank You” cards and with those, plus some chocolates (to replace the chocolates he was given each morning while Dad was having his treatments) we set off for the hospital.  After the treatment, Sebastian proudly handed out his cards and treats to the Nurse (who has been very supportive and understanding) the Radiotherapists and the Receptionists, all of whom have been so nice and caring.  We never waited long periods and overall, it was a good experience or as good as this type of treatment can be.

As a new week emerged we felt strange as we had no appointments to go to and we started a new chapter in this healing process.  At first Mark had some anxiety as he did not know what would happen next.  Would he continue to be struck down with tiredness, would he be able to start looking at work, would we ever get our insurance money and would we be able to get away for some much needed family time away from home?

These and many more questions still remain questions and probably will for some time yet.  On Friday Mark begins reducing his Dexamethazone but only by half a milligram. Then five days later another reduction and then another five days another reduction and so on until he is completely free of this mind altering, mood changing monstrosity of a drug.  Thankfully (I think) his body has become more accustomed to the drug, so its effects are not as severe as they were many weeks ago, but even still, we all can't wait till he is free of this drug and his head is clearer.

We fill in the forms, and jump through every hoop we are asked to jump through, hoping for a breakthrough.  The thing that makes all these forms so difficult is the mind games they play.  When you have a diagnosis of a potentially fatal disease (there you go, I said it...Fatal), you spend all your time meditating, researching and changing your lifestyle to ensure that this does not happen.  I will not lose my husband and best friend just because the medical profession say that it is likely to happen.  Short of selling up and moving to the Tasmanian countryside, we are doing everything to ensure this tumour never returns.  We live a plant based diet and juice daily, meditate and practice yoga as much as we can and we are confident that we are ticking every box in the preventative measures questionnaire.  But these forms force you to look at things statistically, medically and if you don't use the correct words or tick the right boxes, you will be denied any financial support.  So you are again left in a puddle of self-doubt and self-worth.

But then this morning, a glimmer of light shone as my phone rang and it was Centrelink!  I was told that my second application for Carers Allowance had been approved and I would be receiving a payment within 48 hours AND I would receive back pay.  I hung up the phone and couldn't speak through my tears.  Sebastian asking if Mummy was sick and Dad explaining, "no darling, she is just really happy!'

Post Number 16 - From the Patient's Perspective

Thank you for coming back and reading my next post.  This time it will be from a different perspective and a different writer; my husband Mark. My best friend and the man I would walk off the end of the edge of the world for.  He has been through so much, and still soldiering on, but he has decided to write a few words so that you can read about how his brain tumour has affected him and how he looks into the future...This is his story...

Guest Post: From the Patient’s Perspective

Hi, it’s Mark here.  I thought it might be useful for people to have some insight into how I have been going through all of this, and while it would be impossible to describe everything that has happened in the last three months, I will try to cover some of the main events.

Surgery and Recovery (Part 1)

Looking back on it all, the surgery part was probably the easiest part of the whole process. Sure, I was nervous beforehand, and every thought imaginable goes through your head, from wondering if you will make it through surgery, will I still be ‘me’ when I wake up, how much pain will I be in afterwards, but thankfully this all went well and there were no complications from surgery and I woke up still feeling like I was myself, knew where I was, who I was and actually felt surprisingly normal – the pain medication probably helped a lot too!!

It was only several days after the operation that I began to notice subtle things that were different. Trying to do some mental arithmetic or spell a word backwards would start with a feeling of complete ‘blankness’, and required a considerable amount of concentration to come up with an answer. And when I looked back later at the answers I had written down, I could see that some of them were wrong. On the positive side though, repeating similar tasks for a second and subsequent times got easier, more accurate and faster which gave me lots of hope that any deficits that I was currently noticing could be re-learned and that I could ‘work around’ any problems that I might currently be experiencing – the brain really is an amazing thing.

When I was out of hospital only a few days after surgery I had to adjust to a new way of life, very different from the normal working week that I was accustomed to. I had the idea that I would be able to return to work soon and life could get back to the way it used to be… but that was completely ruled out when I started working on a couple of personal programming projects that I have had on the go for some time. When I started looking at some of the code, I could recognise it without difficulty, but writing new code took a lot longer than I was expecting and was not up to the standard that I would normally expect of myself. But again, it got easier with practice and I started to feel reassured that I could return to the job that I enjoyed so much, and would be able to get back to the point I was at before surgery.

In fact there were even signs of improvements in things I had found difficult in the past – like touch-typing, something I had only very recently committed to teaching myself. I now found it a lot easier to find the right keys on the keyboard and type with much greater accuracy – bonus!

I was noticing though that my mood was pretty terrible and I would myself being very snappy with Irene and Seb over the smallest things. As someone who is normally very patient and the one who tries to bring calm and reason to problems, this worried me a lot and I didn’t like the person I was becoming – it’s like being a passenger in your own body, you are aware of what you are doing but at the same time being almost powerless to stop it. Looking back on it, I think a lot of this was due to the Dexamethasone, which is a powerful steroid used to reduce swelling (but you probably already know that from previous blog posts). Once I was able to stop taking it, my sleep started improving, and my mood along with it. I also felt like I was getting some strength back in my body and finally started having some energy to start helping out with a few things around the house again.

Being on Dex is like being on a caffeine-high, 24 hours a day, which makes you feel anxious, on-edge, and never able to really relax. I can feel so tired before going to bed but as soon as my head hits the pillow, I feel wide awake again and cannot shut off my brain. As a consequence I have had no need for caffeine from any other sources and have been trying to avoid it where possible.

Radiotherapy

I am now in the final week of radiotherapy, and I can’t wait for it to be over.  The actual treatment itself only takes a few minutes, but when you factor in travel time to and from the hospital, parking, waiting in the waiting room, then all of the preparation work in lining everything up, the whole process takes over an hour each day, and that’s 5-6 times per week.

It’s a painless process and you’re not really aware of much happening aside from a few noises from the machine and the main part of the machine moving around to target different parts of the brain (this is to minimise the radiation exposure to the healthy cells while maximising the dosage to any areas that may still have traces of the tumour remaining). It’s only a few hours later that I start to notice the effects, which is usually just like a wave of tiredness – a good excuse for an afternoon lay down!

There is nothing comforting about the thought of having X-rays aimed at your brain, and I have often worried about what long-term effects this may have on me. I can’t help but read things online relating to everything I am going through, and while I try to be very careful about not taking everything at face-value, Radiotherapy can cause long-term issues with memory and cognitive function. This is supposed to only affect a very small percentage of patients though, so I just have to accept this as a possibility and move on.

It doesn’t help that while going through Radiotherapy, it actually creates more swelling in the brain while the body tries to heal the damage done by the X-rays, which if not managed can cause more problems – in my case, briefly losing the ability to speak  or read fluently for a couple of minutes at a time. That was one of the most frightening experiences for me so far, and it’s at times like this you are left wondering ‘is this normal’, ‘should I be worried about this’, and it always seems to happen on a weekend when there isn’t a doctor available to speak to.

Long story short though, this has been OK since going back on the Dexamethasone, but as a result I am not getting a restful night’s sleep again, have to take Temazepam to help me sleep (which has its own problems when used long-term), and am back to feeling tired most of the time and not having much energy to do much at all – in fact, writing this blog entry is probably the longest I have sat in front of a computer for a few weeks now.

It’s a constant balancing act of finding dosages of medications that are required to get through this stage of treatment, but trying to minimise the side-effects in the process. I have heard it before that often you are on medication just to counteract the side-effects of another drug, and this is definitely what I am experiencing at the moment. I am really looking forward to being able to finish Radiotherapy, get myself off the Dex (again), and off the sleeping tablets, and hopefully be able to get back into a normal sleeping rhythm again.

Life from Here –Recovery (Part 2)

I’ve been told to expect to continue to feel tired for anywhere from 2 weeks to 3 months after Radiotherapy finishes, so even though my brain won’t be getting blasted with radiation, I will still be feeling the effects of it for some time yet. I have also been warned that at about week 4, a lot of people feel like the tumour is coming back again but this is the body’s final stage of healing, so I have to remember not to panic if and when this occurs!

This time though, my body should have a chance to recover fully and I will again have the strength to start doing more, learning more and just generally enjoying life more. Can’t wait!

Conclusion

Well, if you made it this far, well done!  It has been a lot to take in all that has happened in the last three months, and there is still a long road ahead of us.  For me, I think it has put into perspective how much we can take for granted in our lives, and just how quickly things can change from what you consider to be a normal life to something completely different.

The thought had crossed my mind in the past of how do other people cope when things like this happen to them, and how hard it must be on them and their family. I won’t sugar-coat it – it’s the most difficult experience I have ever had to go through in my life, but the thing I’ve realised is when you are forced into a situation like this, it’s surprising how capable we can be of adapting to the situation and finding that inner strength to keep moving on and to fight another day.

Probably the best advice I have for anyone going through any turmoil in their life is to try and live in the “now”. You can’t change what has happened in the past, and there’s no point worrying about what may or may not happen in the future – they are both out of your control, the only thing we have any control over is what we do right now. Easier said than done I know, but it has helped me a lot to calm the doubts and fears that go through my mind at times.

It’s not easy, some days you feel like giving up and saying “it’s all too hard”, but that’s not what life is about – you don’t get to quit, just like you don’t get to quit being a parent when you are sick or have a child that is misbehaving. I’m not angry about the diagnosis and the chaos that it has brought into our lives – if anything it has given me a chance to stop and reflect on what’s important in life and give me the opportunity to address some of the imbalances that were there in the past. It’s all too easy to get swept up in day-to-day life and lose track of the things that are really important to us, so for me I think this has been a wake-up call and a reminder to think about what really matters in my life.

Post Number 15 - Counting down the Treatments

Happy New Year to all my readers. May all your dreams and resolutions come true!

Our Christmas was a quiet one as expected.  Sebastian received his "Yellow Car" and "Bike" from Father Christmas, so there was much relief when his prayers had been answered.  I decided this was going to be the lowest key, lowest fuss, lowest stress and lowest effort Christmas I could make it and I succeeded!  We broke away from our Christmas morning tradition of neighbourhood children filling our lounge room with excited shrills, ice cold eggnog, music and lots of laughs.  We also put aside our Vegan or Plant based diet and ordered BBQ Free Range Chickens and pre-made salads!!  Gasp!!

On Christmas morning we gathered up some things, packed our bathers and some of Seb's new toys, picked up our pre-ordered chickens and headed for Mum's new residence which is a 3 minute drive away!  She now lives in a retirement village which has many facilities including tennis courts, heated indoor swimming pool, games room with 2 pool tables, bowling green, dining rooms and beautiful landscaped gardens.  All these facilities are available for the residents and their families to use whenever they are available. 

With the village virtually empty, we had the place to ourselves as all the other residents were with their families for the day!  I thought we could have a swim, eat our lunch, then maybe have a game of pool or take Sebastian out onto the tennis courts to ride his new bike.  However things didn't quite go to plan as Mark did not want to get in the pool.  So while we splashed about in the cool water, he sat in a hot and humid environment which resulted in him needing to have a lie down.  After lunch he was still quite flat and did feel like any activity and simply laid down on the floor of the games room while I showed Sebastian the art and skill of a pool table for the first time.  Frustrated, I decided to pack everyone up and head home.  I did my best and Sebastian seemed to enjoy the day, so I guess that was the main thing.

The following day Mark's family (Brother, Sister and Father) arrived from Mount Gambier.  As this was the first time they had ever come to Adelaide for Christmas, I was excited and very thankful that they made the trip.  They stayed in a motel, so there was no stress or pressure on me and Sebastian was overjoyed to see them, play with them and receive more presents.  Else must of been a little upset that she was left out of the gift giving process, as she decided she would eat their Christmas Cards in retaliation.  While that would be a minor problem in general, the cards enclosed money and X-Lotto tickets, but thankfully these were salvaged before complete destruction had been accomplished!

That morning Sebastian and I had a little chat.  His behaviour leading up to Christmas had been appalling and I had been tempted to cancel everything due to the extremity  of the tantrums and nastiness.  Bed time had been particularly bad which was so very unusual for him as he has always been pretty good about going to bed.  So one morning, in a calmed state, we talked and I asked him if his bed was a problem.  He said it was and that it was "making him sick".  He had vomited in his bed around 10 days prior and even though I had cleaned everything, he seemed to have some association to that horrible night.  As we had been planning to purchase a new bed before our worlds turned upside down, I decided a little bed shopping was in order. 

We ended up at Ikea and Sebastian's dream bed was purchased as well as a few accessories.  Now all we needed was delivery and some help with assembly!

With Mark's family around, Mark seemed to pep up and he seemed more like himself.  Meals were easy (BBQ and pre-bought salads and BBQ Chicken and salads) so we could just relax, play with Sebastian and marvel at how quickly he mastered his new bike! 

One afternoon, once the lunch dishes were cleaned up, I decided to make a start on the new Ikea Bed.  Mark seemed a little weak so he had a rest in the lounge room, while I grabbed some tools and made a start on dismantling the old bed.  Soon I had a little help from my Sister-in-law and before long, it became a "girl-power" challenge to build this dream bed.  Things went relatively smoothly and we were on a roll and feeling quite proud of ourselves, until we got to the end of the project when we realised that one piece had been put on backwards! Half the bed needed to be unscrewed and changed around and this took nearly as long as the whole assembly had done.  By this stage we were getting quite tired, thirsty and hungry.  With the drinks fridge lacking in Beer and Sebastian nagging "is it finished yet?" while swinging from the framework, I sent the boys out on a beer run.  Never before had I wanted a Beer so badly (I am a wine drinker usually).  By seven thirty Sebastian was asking "Um Mum, are we going to have dinner today?" so I sent the boys out again for Fish & Chips so we could finish this masterpiece without further interruption.

At last it was done and we could stand back and be proud that "we did it" and Sebastian learned that woman are quite capable of driving a drill and building things.  And from that night on, there has not been a single protest when it comes to bedtime! 

With Mark's family leaving again, life was back to taking a day at a time and morning visits to the hospital for radiotherapy.  Mark seemed to slip backwards again, sleep quite difficult, moods and short temperedness a daily occurrence.  I find this particularly difficult as I seem to be unable to make him happy and I tip-toe around Sebastian so as to keep him happy and not have him scream or tantrum which then upsets Mark even more.  It was becoming so very draining and I was running out of fuel fast.  With New Year fast approaching I dared not ask Mark what he felt like doing until the last minute. 

We ended up at West Beach with Fish and Chips (yes again) and this simple plan seemed to be mis-communicated several times over.  But in the end, we got there and that's all that matters.  We settle down with our picnic and enjoy the peace and quiet until Sebastian needs to go to the toilet, and not the type you can just do on the beach!  So Seb and I made the trek back up the beach to the public toilet while Mark sat back and relaxed.  Locked!  OMG!  Walked around the corner to the Surf club and finally made it to a toilet, only for Sebastian to tell me that he no longer wanted to go! No amount of talking or persuading was going to make this little boy poop, so we trekked all the way back to the beach, steam billowing from my ears!

Ten minutes later...you guessed it...off we go again, up the beach, up the ramp, past the public toilets and around the corner into the surf club.  This time a bribe of chocolate would help.  Thank goodness I threw some in last minute.  Success at Sunset!  Back on the beach, rugged up, glow sticks on, sparklers sparkling, we watched the 9.30pm Glenelg fireworks and we could relax and enjoy being together at this special time.  For us, it was midnight and it was wonderful.

New Years day and another swim in "Oma's Pool" and this time Mark joined in and I think he might of even smiled a little!  Today, (two days later) I am starting to feel a little better as the end of radiotherapy draws near and we can see the light at the end of the tunnel.  Our chat with the Radiotherapy Doctor went well and again, more explanations were given to many questions.  Satisfied that we had some plans for the near future, we could start to feel happy and maybe we could even start to plan that holiday we had talked about.  A chance for us to be together as a family, relax and be happy and give Mark the chance to heal.  Until..the phone call...

As luck (or not luck) would have it, we reassessed all our finances in July of last year and then of course three months later, we make a claim. Hmmm, very suspicious it would sound or you could say, gee, a greater power was looking out for us.  The insurance company however, does not seem to believe in a higher power and seems to believe that Mark should never have been accepted for this policy due to his medical history!  Yes, a Medical History which includes going to the doctor once in 2009 and once in 2011 with lethargy, or just feeling rundown and tired.  Tests were done, all came back normal.  So...you tell me Mr Insurance Man (or woman) what part of that Medical History seems suspect to you? 

Furious, I rang the Bank Manager who had suggested we take out this insurance (his idea, not ours) and I told him that he might want to reconsider selling this insurance to future customers as it does not seem to be worth the paper it's printed on.  He was shocked and asked me to write him an email with the details so he could forward it on to the "powers to be".

So now we wait.  Wait for the official "in writing" rejection letter from the insurance company before we can take it any further, wait for Centrelink to process some kind of assistance payment and hope that we can make our savings last until some miracle happens!  To date we have received one mortgage payment and that's it!  Lucky we are careful with our money and had something to fall back on, otherwise we would be in a whole other world of pain!

Post Number 14 - Full Circle

It's been 13 days since my last post and I have so much emotion built up inside, people just have to say "Merry Christmas" and I burst into tears!  We were going along so well as we changed our Radiologist Doctor and our new doctor is so wonderful.  As a woman she is so compassionate and understanding and explained so many things to us, that our list of questions was answered without asking a single question!  Now that's the kind of people you want to have in your treatment circle.

The Dex was reduced and even stopped altogether, but that didn't last long.  But with a new script for 0.5mg tables vs 4mg, we were on our way to self-regulating a dose that would suit Mark's needs.  Things were ticking along ok, although each day I was getting more and more tired and lacking motivation.  The days are getting so monotonous, everyday the hospital, every day drive from here to there; doctors' appointments, Centrelink, Medicare, Drop off Seb here and then pick him up again, drive, drive, drive....I'm so sick of driving!

I don't feel like cooking, I don't feel like cleaning, I don't feel like gardening, I don't feel like juicing, I don't feel like watering, I don't feel...anything.  There is just numbness inside.  This is supposed to be the time to be planning the "big day of the year", gift giving, writing letters, baking etc etc.  Sure I have done some of these things, but my heart isn't in it.  I have done the bare minimum or my bare minimum.  This is not what I wanted for Sebastian.  I feel like I have failed him although I know deep down I haven't and he is fine.  I guess that's the problem with having such high expectations, they are very easily broken.

Just when I thought I couldn't feel any lower, while hanging out the washing, I hear Sebastian screaming and crying.  He was supposed to be having his afternoon rest and he had been protesting the house down.  Sebastian and I have been butting heads of late.  Nasty comments, tantrums and lots of "No" and "I don't want to".  Mark and I had also been butting heads as he was questioning my words and tone towards Sebastian and I was trying to defend myself.  In case you didn't already know, I once had a husband who blamed me for everything that went wrong and I guess I have never really recovered from those times and still believe that most things are somehow my fault.  Even if I try to defend myself, I really believe that I am to blame.

I leave the serenity of the washing only to find Mark in the hallway saying he was not feeling well.  I quickly get him to lie down on the bed while also consoling Sebastian who is sobbing and asking me to read his story.  With all of us on the bed (Else included) I get to the bottom of all this commotion.  Mark had been reading Sebastian a story before rest time and 2 pages in, he couldn't read the words!  Rather than look at the whole sentence and read it, he could only focus on one word at a time, then speak the word, before then looking at the next word.  I stayed with him briefly,  but could soon see that whatever had happened, had passed.  I finished reading the book for Sebastian and left him to have his afternoon sleep and then went back to Mark.  He was ok, only tired, so I left him to rest as well.  Convinced it was nothing to be too worried about, I went back to my long To Do List, including 2 weeks worth of ironing.

A few hours later and Mark emerged.  He seemed rather agitated, so we talked.  He was panicked that this was the start of something bigger and that these kinds of episodes would become more frequent and possibly even permanent. I reminded him of just how much his body is going through with Radiotherapy and that I was sure things would settle down.  Half hour later and Sebastian emerged and with company expected very soon, I decided a bit of TV would keep Sebastian settled while I put some things together in preparation for our guests.  But before I could say "Bob's ya Neighbour", Mark called out to me again saying that he was "feeling funny again".  "Sit down" I call out, so he sat right there on the bedroom floor! "I meant on the bed, but ok, if that works for you, I guess I can sit on the floor too!" I thought.

I tried ringing the Adelaide Radiotherapy office, but they were closed and their "oncall doctor" had a voice mailbox that was full and therefore not able to record any more messages.  I had no choice, I had to take him back to hospital and as our guests arrived via our back door, I quickly stopped them, turned them around and sent them home again over the back fence, only this time with Sebastian in tow.  It all happened in a manner of seconds, as you would hope it would in times of semi-urgency.

When we arrived at the hospital, I was relieved to see an almost empty waiting room and only one ambulance in the parking bay.  It took around 40 minutes to get in and while explaining to the male nurse about Mark's symptoms, he had another episode.  It was so subtle that most people wouldn't notice, but I noticed it straight away. His speech was slowed and you could almost see the strain in his face trying to get words out, but disguising it very well, albeit not meaning too. 

I stayed with him for a while, but had to walk outside to make phone calls as there was zero phone reception.  After explaining the situation to 3 different people, I had made my own diagnosis.  Dr Irene says; "The problem is not a permanent one, but one caused by too much inflammation on the brain, applying pressure to the area that controls speech and cognition.  You will need to increase your dose of Dexamethazone to as much as you can handle, the swelling will go down and your symptoms will go away.  A CT Scan however, will confirm this".  Maybe I was a doctor in a past life, or maybe it's just common sense when you relax and think about it calmly.

Christmas seems to be the worst time of  year to need emergency treatment.  When I left the hospital at 8.30pm, there were 6 ambulances in the parking bay and the waiting room was filling up.  It was now unlikely that he would see a CT Scanner before the light of day, so I went home to grab some things for Mark and to throw some things over the fence for Sebastian so that he could now have an unplanned sleepover!

That night, exhausted, I should have gone straight to bed, but instead I decided a box of chocolates and some wine would somehow fix all my problems and that I was entitled to indulge myself in such trying circumstances.  No wonder I am overweight!  Still working on that reflex action!

Although my diagnosis was 100% correct, a CT Scan did not show any inflammation, but maybe that was due to waiting 17 hours for the CT Scan to happen!! With the CT Scan done, it then took a further 5 hours for a doctor to visit him, tell him the same information as Dr Irene and then discharge him. 

Tomorrow is Christmas Eve, Happy Christmas everyone!  I wish you a healthy one and enjoy every moment you have with everyone you love as you just never know what's around the corner!

Post Number 13 - Breaking Point

Hello fellow readers!  I always know when I need to write a blog as I feel all the emotion build up inside and I spend all day trying to keep it together.  Talking to people does not help me as everyone seems to have their own advice to give me and advice is not what I need.  My blog allows me to express myself without judgement and without talking back to me.  I can pour out my thoughts and emotions and release them, then start fresh again in the morning.

It's been a tough week for us both, but mainly for Mark.  Going back onto the Dex brings with it the side effects, the main one being, inability to sleep!

We always knew that this drug was going to be tough.  Each day that he was on it, he achieved less and less sleep each night.  He tried everything including having half a tablet in the morning and half at lunch time, one full tablet in the morning and nothing for the rest of the day, yoga, meditation CDs, boring podcasts, sleeping back in his "man pad" you name it.  He even reduced the Dex to half a dose over the weekend, but still no relief came.  Each night the total amount of sleep reduced.  By Friday he was starting to show signs of depression again, so I suggested we go in to one of his old work places to "catch-up with the guys" so to speak.  He had also come up with the same idea as our son attends a child care centre just a block away.

The visit to work proved invaluable and shows just how important male company is in these difficult times.  Unfortunately he has not had many male visitors of late and his life tends to revolve around radiotherapy, doctor appointments, playing with Sebastian and afternoon rests.  I know he is getting sick of this and he needs something else to occupy his thoughts.  His tiredness prevents him from trying to write any code or even sit at his computer.  He has watched all his downloaded TV programs and playing playstation on his own is not much fun.  All that and no sleep... no wonder he is depressed.  I'm depressed just writing about it.

By now his total amount of sleep over a nightime period was zero and breaking point came Sunday night.  He was so exhausted and he knew that this put extra pressure on me.  I too was becoming exhausted and frustrated.  I was frustrated that he couldn't do the smallest of things like set the table for dinner and he was frustrated that he felt so helpless and good for nothing. 

That night after Sebastian had gone to bed, we talked, cried, talked and cried some more.  We came up with a plan to go early to radiotherapy and beg to see a doctor, any doctor as we could not wait until his next appointment on Thursday.  He needed some relief from this tiredness.  A sleeping tablet that would help him sleep but not make him feel drowsy, disoriented and feel like rubbish the next day as the tablet I had given him weeks ago had done.

After another sleepless night, we had our breakfast and headed in to the hospital.  I had explained to Sebastian that Daddy was feeling very unwell and that we needed to talk to a doctor as well as have our usual radiotherapy treatment.  I needed him to be extra good and extra quiet while we spoke to the people we needed to speak to.  Receptionists, radiotherapy nurse, radiologists and the doctor all saw this broken man's tears and all felt his pain and all did what they could, albeit very little.  Discussions with the doctor resulted in a script for a sleeping pill.  The discussions were a little weird, contradictory and just downright...... j?*%^$# frustrating?  I can't even explain it, but let's just say, we don't like this doctor very much and we later discussed our own plan for what Mark would do next.

So tonight we will do some yoga, even though I know Mark doesn't want too and he has muscle weakness in his legs and arms and he has a headache and he feels like sh*&$.  But I need him to try.  Just do some of the breathing and the basics.  He needs to sleep, please, please let him sleep.