What next? I do need to breathe...

Sorry I am a bit late writing this but I have not been too well, it is all getting a bit much.
I am going slightly crazy waiting for things to come in the mail.
The new paperwork for a different doctor to fill in arrived complete with return addressed envelope; that's good put them aside for next trip to hospital for my husbands chemo, one thing I have been waiting for will be taken care of when we go to the hospital. 
We are still waiting for the health care cards to come in the mail. 
Wednesday arrives, that is chemo day.  I tell my husband make sure he has the paperwork for the doctor to fill out, but don't let them have the return envelope, I want to read what they said before it gets posted.  Yes, the paperwork is in his bag with other bits.  Good. 
When I picked my hubby up on Wednesday after his chemo he hands me back the form not filled out but the envelope is missing.  They lost it at the hospital but they did give me a replacement envelope not addressed but that's ok, they were too busy to do paperwork on Wednesday at the hospital. 
An appointment has been made at our local hospital for Friday two hours before my hubby gets his bottle taken off, good I thought it will all work out one problem sorted. 
It is just over a week since I was told I was getting the health care cards so I thought I would call and see where they were, but that would have to wait until the next day it may come in Thursdays mail and if not I will call then.  Thursday comes and no cards in the mail, so I call to ask two things: where are our cards, and what address do I send the completed form to?  I was bewildered to say the least I spoke to a lovely person (I can not tell you his name or he may hunt me down and kill me or something), he said that yes, our cards were processed on the 12th March the day I rang the first time to see where they were, but he could not understand or tell me why they were only posted on Wednesday, he suggested that I go into Centrelink and get interim cards because they would not get here until the following Tuesday or Wednesday. 
While on the phone I planned to go in on Monday and then I asked again what address do I post the form to?  I was told there were several possibilities, so just bring them in when I come in on Monday, and then he says that the cards were granted but not processed on 23rd February, so we can claim any medical expenses we had to pay which would of been covered by a health care card if we had one from that date.  Good, I had some. 
Friday comes and we go to the appointments at the hospital after the doctor fills in the form he says "tell your wife not to hold her breath waiting for a yes, it isn't likely you are not ill enough", my husband was shocked.  He is getting worse every treatment, the side effects could kill you if the cancer doesn't. 
We got up early on Monday to go and get things sorted at Centrelink, we walk in and join the line.  Yes! Our turn!  We tell the lady at the desk what we are there for, she says sit and wait for your name to be called, and that's what we do.  I get my puzzle book out and start doing the puzzles.  I almost finish a whole puzzle before they call us.  At that moment, my hubby says he needs a toilet, we look around cannot see one (remember he is being treated for bowel cancer).  I ask the lady she says there isn't one, but there is one at the town hall across the road, but if we leave we will have to line up and start over again.  My hubby says he will wait.  We sit get our two-week cards, which are pieces of paper, and hand in the doctor's report.  This all took about three minutes. 
I then go to medicare (they share the one building) to claim the medical expences money back.  The lady smiles and says, "can I help you?" I tell her what I want and she says, "I cannot do that for you today, you do not have the form."  I say "where do I get the form?" expecting her to say over there or some such thing, she says at the chemist where you got the scripts filled, I say ok, as we're going there this afternoon. 
While my hubby had his appointment with his GP, I go across the road to the chemist, simple get the form.  I ask for the form and get told "we do not have any" I tell them about the events of the morning, where I was told to go back to the chemist where I got the scripts, the lovely lady at the chemist was gobsmacked she said we got our original from them and just copied it, she calls medicare for me and they tell her to download the form for me which is what they do when asked for the form what the ! I now have a form going tomorrow to get my money back fingers crossed it all works out. 
One good thing happened today: our cards came in the mail.  Yes, we now have health care cards, three months after we first applied for them as a hardship case, goodness knows how long we would have to wait if our case was not urgent! 

Good news, bad news and more

In my last blog post I was after a pre-loved washing machine; the good news I found one, a bit smaller than I wanted but a good one at the right price, so yippee! I got one! 
So I am washing at home in my comfy clothes. 
The bad news is after weeks of jumping through hoops and answering questions on  reams of paper, Centrelink has rejected my husband's claim for a disability pension.  He is not sick enough.  He did not total twenty points or more.  How much under they did not say. 
My aplication for a carer's payment is under review and could be for up to another six weeks and then I might not get it. 
We have put in more paperwork to see if we can get a Health Care Card for people with a low income, to help with medical expences, and to get discounts on other things.  This would be very helpful to us.  My husbands sick pay runs out soon we are on aprox one third of the wage he was on when working full time. 
When we have no income of any type and have used every cent to our name then and only then will centrelink help my husband with a sickness allowance but me all they say is "why don't you work?"
 I am getting sick of hearing this.  The answer I give at the moment is my husband is ill I am looking after him, I am his carer even if you don't agree.
 I have my own health problems which are helped with medication, this is in their records. 
Each and every time we have contact with them different people ask the same questions, its like banging your head up against a wall.  Come to think of it, that may be less painful at this time. 
I can not sleep unless it is broken sleep; I am so stressed about paying bills, all the same bills, on one third of the money. 
At least we have a roof over our head, even though it leaks and we can't afford to fix it at the moment.  I am watching my husband get sicker and sicker with each chemo treatment he is getting more side effects with each treatmentat the moment he is a grumpy man trying to pick fights and when I don't react he gets upset with me.  Oh the joy, what to do. 
I am trying to get through one day at a time, that is all I can do, or I'll find myself being swept away with emotion.
Every day I find myself leaking tears for all sorts of reasons, I buy my tissues in bulk packs now, they work out cheaper that way.  Until next time I'll try not to get swept too far away.

The Journey So Far (OR: Why I'm Swept Away)

It all started around about August.  My husband said he was unwell.  But he had to go to work; no time for a doctor's appointment.  My husband works away from home three weeks at a time.  When he came back, it was just in time for our 35th Wedding Anniversary- he was home for our anniversary for once!  It was nice.
A few days later he got a doctor's appointment.  This started off a whole range of tests.  As a result, my husband was referred to a specialist.
The specialist said he would need a colonoscopy.  If done through the public system, there was a two year waiting list, but the private hospital had a special (woohoo!) we had to find $590 as soon as possible (oh.  Help!).  So I decided not to keep the money that I had put aside for council rates, and instead used that, along with a bit of juggling around to get it done as soon as possible.  I still haven't paid those rates, and the next lot is just about due!
My husband had his colonoscopy on October 23rd.  The doctor found a problem, and that same day, while he was still "starving" (husband language for "fasting") he had to have urgent scans.  The result was he was told he had a growth on his bowel and it could be cancerous.  More tests!  And the result was cancer.

A series of quick doctor's appointments occurred, to get him into the public system; we have no health insurance, due to reasons beyond our control.
While waiting for surgery my husband could not work because he works away from home, in the catering side of the oil rigs in the desert.
He went into hospital to have surgery on the 9th of November.  They cut the piece out, and joined his bowel successfully.
We thought that would be the end of it.
We were told that would be the end of it.
We were told six to eight weeks and he could go back to work.
 He was in hospital for four days after the surgery, and was sent home with staples still in, and a kit for his GP to remove them; the kit included instructions.  At this stage, his bowels still weren't working, but he was sent home all the same.

It was at the appointment with the GP that chemo was mentioned for the very first time.  His GP simply said, "When does your chemo start?" shocked and horrified, my husband said, "What chemo?"  the GP then said, "Your surgeon will refer you to an oncologist."  The doctor was surprised it hadn't been mentioned before this time.
At the follow up appointment, my husband mentioned chemo to his surgeon.  The surgeon said yes, it usually happens that way.  The surgeon seemed to think it was implied, but nobody at all had mentioned it to us before the surgery, or at the hospital.  Not happy!
Husband sees the oncologist before Christmas, and was told he'd be contacted with a starting date.  He is told he will need chemo every two weeks for six to eight months.  See the problem?  Husband works away from home for three weeks at a time!  He gets contacted just before Christmas for an oncology appointment, and told he will have to have a surgical procedure to have a contraption (I can't remember the word) put inside his chest for the chemo, and this will happen on the 3rd of January, with chemo to start on the 11th of January.
Husband is on sick leave from work, which equals only about one third of our usual income, but all our bills are the same.  God help us!  Where is the money coming from to pay the bills?  My answer was, "Let's see if Centrelink can help!"
On the 4th of January, I applied to Centrelink.  A few days later reams of paper arrived full of questions that Centrelink wanted answers for.  Quite literally hundreds of questions.
I burst into tears.
There were questions I had to answer, my husband had to answer, his doctor had to answer.  And they wanted all of this within two weeks, around the same time my husband was starting his chemo, not in our home town, but a slow 30km trip each way.  This happens every two weeks, in a car without airconditioning, because we cannot afford to get it fixed at this time.  So we drive with the windows down.  Reminds me of my childhood.  Not so nice when it's raining, though- we get a little bit wet...
Knowing I couldn't meet Centrelink's deadline, I rang and asked for an extension.  They did give me one.  But to get help with the paper work from the doctor, we needed two appointments, each costing $65 up front.  Centrelink have all our paperwork, but now want an interview with my husband, to see if we really qualify for sickness and/or disability payments.  That appointment is next week.

On the first day my husband had chemo, after sitting over four hours at the hospital, he came out with a cotton bag around his neck with a bottle of chemo in it, attached to his chest via a tube.  This was to remain on him for another 48 hours, which we then went to our local hospital to get removed.
We were not told this was going to happen.
I was in shock and started to cry.
I them find out that if something happens to the bottle and it breaks or spills, noone
On husband's second visit, he was given a pile of reading material containing all the things we needed to know before he started chemo.  Two weeks too late, the chemo journey had begun.

He has just had his third lot of chemo, and it's not his fault, but he is turning into a grumpy old man!
Husband is getting new symptoms each time he has chemo, and has to take his temperature daily to make sure he is OK, the first sign of any illness- a cough, sore throat, whatever- we are up at the local hospital.  Due to the fact he is on chemo, he has a "Get Out Of Waiting Room Free" card, as his immune system is weakened.
I have done so much sitting around in doctor's waiting rooms and hospital waiting rooms, that if it wasn't for the puzzle books I carry with me, I would surely go insane!  Find-a-word is my friend.

I have my good days and my bad days, and some days I wish I could be swept away in a bubble, on the gentle breeze, but I know I can't be; we just have to deal with what we have been dealt.

One lesson I have learnt from this is ask questions even if you think they are silly!