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!