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!'