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!
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