Kiama, New South Wales
Barbara is 63 years old. I know her as a family friend – her daughter and my sister are school friends – but not intimately. She has always lived with Irritable Bowel Syndrome and had her gall bladder removed at age 37. In 2013 she was diagnosed with two primary cancers – one in her pancreas and another in her kidney. As a result of treatment, she is now a type 1 diabetic. Barb does not travel far from home, and so we meet at her coastal home in Kiama, New South Wales.
There was only three weeks between my diagnosis and the first operation. Worried by a test result from a CT scan, my GP called me at work and told me to leave immediately and have another CT scan. Two days later I found myself sitting in what would become an all too familiar oncology office. The outlook was grim. I had emergency surgery the next morning (a pancreaticoduodenectomy, otherwise known as Whipple's procedure), where they found a 5cm tumour on my pancreas and another in my left kidney.
My life as I knew it was over. I could not return to work. My husband Ken took three months off. Our life plans changed.
After the operation I just didn’t want to be here. I didn’t want my family to see me not being able.
The 13 August this year will be the two-year anniversary of my operation. But two years later, no doctor really has a hold on my conditions.
I have always had Irritable Bowel Syndrome (IBS), which among other things means an inflamed gut and stomach. And when I had my pancreas removed, I became a diabetic overnight. But now, without daily medication vomiting and diarrhoea are the norm. I have lost at least 30kg since the operation. I can’t eat much, and I watch my diet. I have to: there is no sugar, no processed foods. But I don’t take vitamins or supplements. I don’t want to mask the symptoms. And I tweak my own insulin.
Speaking of her insulin, Barb gets up from the table and opens the insulin kit stationed near the sink. Without fuss, she sticks a needle in her abdomen, right through her shirt. She does not wince, and and she does not appear to particularly care which area she targets. I ask her whether she feels any pain. She admits that her abdomen is numb, and that she has not been able to feel it since the operation.
I feel best between noon and 3pm each day. The nights are especially difficult, due to the pain. Sometimes my eyesight is a problem, as well as the circulation to my feet.
I take at least 13 pills per day – some to settle my digestive system, some to compensate for the lack of a pancreas, but the bulk of the pills for pain and sleep management. Creon, Lantis and Nova Rapid to compensate for my removed pancreas, Rabeprazol for my digestive system, Endep for pain and sleep, and of course Endone and Oxycontin for the pain. These are my daily regime. The side effects are often profound.
I know Barb is in pain as we speak. She shifts uncomfortably in her chair, first on a reclining couch and then at the dining table as we eat. I wonder how much speaking with me is draining her, and how much she will pay for it later.
I need the medications. But month to month it does become expensive, even though I have private health insurance and my medications are covered by the Australian PBS and the National Diabetic Services Scheme.
I have had to adapt. Before we installed railings, I went down the stairs on my butt.
Barb looks sheepish at this admission, but I laugh. I have done the very same thing many a time during a Multiple Sclerosis relapse. This breaks the ice as only sharing the quiet indignities of chronic illness can.
Daily life can be dangerous. I have passed out in the shower. And I once fell on the stairs at night and remained there for two hours until Ken woke and came to find me.
I can no longer travel overseas. Apart from the physical limitations imposed by my medication and my bowels, it would be financial ruin if I were to become sick abroad. The best we can do is to see the rest of Australia that we haven’t seen.
We are going away in October for three weeks. We will drive from home in Kiama to Townsville, Darwin and Katherine, and then back through the centre of Australia. I will have a car fridge for my medications, and we will take it as slow as we need to.
I take each day as it comes. I don’t class myself as disabled. I don’t have a Health Card, although I do have a care plan through the local clinic.
And I have my family. I have a wonderful husband and two beautiful children. My wonderful husband. Before adopting our girls, we went through everything, including IVF and infertility. When you have been through that, it makes or breaks you. Divorce or separation is not an issue. It is enough to be together. Since the operation my libido has gone. But it is enough to hold each other each night, to have that intimacy.
I have good days and bad days, and there are still more good days than not.
I don’t want to be a burden on my husband. Burden is a terrible word. He wouldn’t see it that way, but I would feel like it. I keep telling him ‘I am on my way out, and afterwards I don’t want you to be alone’.
I can hope now. But when it comes to the crunch, I know what I will do. I haven’t spoken about it to my husband, but he knows.
I have my pills. I won’t ask anyone to help me, I just ask that they accept my decision.
I ask Barb about her girls, Jade and Andrea. Many years ago, I coached Andrea’s school netball team, and I wonder how as a young adult she feels about her mother dying.
I have not spoken to my girls, but I have written them a letter. I hope they accept how I feel and what I have said, because no amount of words can change the end result.
But maybe a child out of wedlock would be a good idea given the way I am going.
My mother died of colon cancer in 2006 when she was 78. For her, there was only six weeks between diagnosis and her death. Two years on from my own diagnosis, I see an oncologist every three months. The doctors can find no reason for my cancers. They simply are.
But the last test revealed high calcium levels in my blood. I think the cancer has returned.
At first I assume Barb is in denial. I restrain myself from interrupting, from calling the doctor for emergency appointment. But she is calm, she is matter of fact. This might explain the current pain. It might not. Barb feels no rush to confirm whether the cancer has returned, or whether there is yet another chronic condition that will slowly destroy her body.
I want people to know that they can deal with whatever comes. Even cancer. Just don’t think too far ahead, for it won’t bring you any joy.