It’s been awhile
since you’ve heard from me – and that’s been deliberate on my part. My last
post wasn’t my finest work as I wrote about some of the negative aspects of my
cancer journey. Afterwards I gave myself a serious talking to and decided that
if I couldn’t put a positive spin on things that were happening, I wouldn’t
bother. ‘Cause describing the bad stuff seems to make me feel worse and keeps
me focusing on all the wrong things. But, in the interests of full disclosure,
I have been writing – I just haven’t posted anything ‘cause most of it’s crap.
To paraphrase Robert Burns… “The best laid plans of mice and men often…
”
So… This is going to be about some of the negatives that still seem to
be trying to rule my life. And I’m rationalizing my decision to write about
them by telling myself that someone who reads this might become forewarned, and
be able to avoid the situation I’m now in.
It’s just over twelve months since I was
diagnosed with cancer for the second time in six years. As I’ve wandered along
through scans, tests, clinics, consultations, surgery and radiation therapy,
I’ve met and interacted with a lot of very smart, dedicated and emphatic people
who work in both the Medical Profession and associated services. Everyone has
been fully focused on making sure the right decisions were made to ensure I
received the best care possible – in the moment. But, when those moments pass,
and there’s no one looking at you, asking “How can I help?” Who do you turn to
when you need help, guidance or support? Perhaps the Cancer Society.
I had a bit to say about this organisation in my last post, and I felt
a little guilty afterwards, so I sent a link to the post to a Manager at the
Cancer Society, asking for feedback on the post and for any comments they
wished to make. Here’s the response I received…
“Hi Chris,
I
just left a garbled message on your phone.
I have passed your email
and link to your blog to the Supportive Care team in Hawke’s Bay. I have asked
them to read your Blog (very good and identifies a number of areas we need to
work on), and get hold of you re any support we could help you with. Either
Angie or Pauline will give you a call at some stage.
I will follow up the team
on Monday to make sure you have had some contact.
Kind Regards”
I received this email on 12th. September. As I try to be an
eternal optimist, I’m still hoping someone will contact me.
Perhaps tomorrow…
perhaps not.
Anyway, my big issue at the moment – the one that keeps me awake most
nights – is to do with money. When plans for my treatment in Auckland were
being made, we were told that travel and accommodation costs would be covered
by the Hawkes Bay District Health Board. Not long after that I received a
letter from the National Travel Office, letting me know that my upcoming travel
and accommodation costs for treatment in Auckland had been approved for financial
assistance. So, with assurances from everybody involved – off we went.
Now here we are, three months after the end
of treatment and… to be quite blunt about it, the Hawkes Bay District Health Board
– and or – the National Travel office, still owes me a significant amount of
money. The silly thing is, they know they do and acknowledge that I need to be
paid, but, for some reason that no one wants to explain to me, it seems they’ve
both decided that it’s the other’s responsibility. The result of this standoff so
far…
No money for Chris.
No… I’m not saying anything more about the six weeks of living in a
motel room while going through radiation therapy. I just want to forget it ever
happened. But afterwards, I sent all the paperwork for the accommodation costs
to both the National Travel Office and the HBDHB. Then we went home - took money out of our savings to pay the
credit card bill – and started to focus on putting our lives back together.
Now, here we are, more than three months later, and the silence from both
the National Travel Office and the HBDHB has become deafening – to the point
where I don’t even know how to start to find out how to get some money back. Two
weeks ago, I rang the National Travel Office to ask about the status of our
claim, only to be told that it had been declined, and referred to the HBDHB.
When I spoke to a person at the DHB (the
only person I know that I thought might be able to help), I was told the claim
had been sent to the “Panel” for approval and that I should hear something from
the DHB in a couple of days. When I asked how to get in touch with the “Panel”,
I was answered with an alarming degree of waffle about systems and processes
that clearly indicated the person I was talking to either didn’t have a clue
who the “Panel” were, or were very disinclined to tell me how to contact them.
So here I am, writing this and thinking about “what ifs”…
What if… I had gone to Palmerston North
for therapy instead of Auckland?
I’d probably only have one eye and
be struggling to write this rubbish.
What if… The Cancer Society had been
able to give me accommodation at Domain Lodge in Auckland?
We’d
be thousands of dollars better off.
What if… The Cancer Society had
arranged alternative accommodation in Auckland?
We’d be thousands of dollars
better off.
What if… The National Travel Office had
been able to arrange accommodation in Auckland?
We’d
be thousands of dollars better off.
What if… The Hawkes Bay District Health
Board did what they said they would and paid us back?
We’d
be thousands of dollars better off.
What if… We didn’t have the savings to
be able to pay thousands of dollars for accommodation?
In hindsight, and knowing now what I didn’t know then, I would have
asked for the Radiation Therapy to be delayed until accommodation became
available at Domain Lodge. I know that everyone would tell me not to do that,
because there’s an optimum window that all the experts seem to agree on – being
within forty-two days after surgery.
In my case – I had surgery on 12th.
March and started Radiation Therapy on 11th. July. This is a period
of 120 days. Would an extra week or two have any real material effect on my
survival chances given I was already so far outside the recommended timeframe?
Anyway, it’s all hypothetical now and doesn’t really matter. I just
want them to give me some money back… as they said they would.
Now, here’s a question… Should I send this to Fair Go?
... too late!
