Helen’s breast cancer diagnosis in 2015 had a devastating financial impact. Before her diagnosis, she and her husband were both on a disability pension. Her husband did a small amount of casual work to help the household income. Her 21 year old daughter lived independently, and Helen and her husband rented their home. Their budget was tight, and they needed to plan to make sure they had enough money each fortnight.
The cancer diagnosis made their financial situation almost impossible to manage. Helen was very sick while having chemotherapy and needed her husband to help care for her. This meant he had to give up his casual job. While he received the carer’s payment from Centrelink to replace his lost income, it was not enough to replace the money he used to earn:
Having him here was pretty vital. We lost his income and he applied for the carer's payment. Where we lost his income we only got $120 a fortnight in exchange for that, where he was earning more than that.
Helen lives on the Central Coast of New South Wales and had to drive a long way for her daily radiotherapy treatment in Gosford. Traveling 40 minutes each way, five days a week for six weeks, was too much wear and tear on their car. The car broke down and was unable to be repaired:
We then had to go for a bank loan to buy a car to get me to treatments. We could not be without transport.
Helen was able to claim reimbursement for travel expenses, but she still had to pay fuel bills upfront, and wait for her claim to be processed before she received the reimbursement. The costs started to become too much for their budget, and she and her husband sought help from community organisations for food and bills:
Needing to pay transport costs up front first meant, well okay, we've now spent all our money on transport this week, or this fortnight, we now have nothing to pay our telephone bill or our food bill. We made a lot of visits to our local neighbourhood centre to get some help with food vouchers.
When the alternator on the car they had bought needed replacing and when they needed to pay their registration, Helen and her husband were able to get loans through the community centre. Now that she has finished her active treatment, Helen and her husband are in the process of paying back their loans, but the financial difficulty continues:
The last 12-18 months we've struggled harder than we've ever struggled. You know, some fortnights I've gone to bed crying when I sit down and look at what we've got and look at what we have to pay.
Helen has had many other out-of-pocket expenses related to her cancer diagnosis. The treatment put Helen into premature menopause and she needed to install air conditioning at home to cope with debilitating hot flushes. Medications to treat her cancer, and to manage the side effects, continue to be a big expense. Changes to medicines listed on the PBS and to bulk-billing services are a significant worry for Helen:
We rely on so much off the PBS. There was the talk of making us pay for doctors’ visits. To me, if I have two or three visits with the doctor in a month, we can't afford a $7 visit each time. So you're constantly watching the government and what they're doing and what they're trying to take away.
Having to pay for follow-up mammograms, now that she can no longer get them for free as part of the BreastScreen program, and follow-up appointments with her breast surgeon are other expenses that Helen has to budget for:
Once you have been diagnosed with breast cancer you cannot have a free mammogram. So that cost impacts on us as well because I'd go for a mammogram, an ultrasound and I have to pay the ultrasound, which is $55 out-of-pocket. It doesn't sound much, but then a week after you have that you then have to go back and see your breast specialist, which is another $100 that you are out-of-pocket. You get a little bit of that back, $30 or something, but you're still out-of-pocket $100 in that week, plus the petrol to get down there for the scans and then for the breast specialist.
Emotionally, the financial impact of breast cancer has affected Helen and her husband greatly. The two Christmases since her diagnosis have been difficult. They could not afford presents for the adults, and only small gifts for the children. Her daughter, a gifted athlete, pays for Helen to come and watch her compete, which is something she wishes she could pay for herself. Helen is aware that she can get counselling sessions subsidised through Medicare, but the six sessions she is eligible for are not enough to deal with ongoing impacts of cancer. Seeing a psychologist or counsellor privately is unaffordable on their budget:
I can't afford to see a psychologist privately, but six visits on Medicare is nothing, you're just building up a relationship with a counsellor in that period of time. If I needed to have counselling, I can't afford it, so it's a matter of, okay, just bite the bullet and continue on, and hope that I don't get too depressed.
Helen was grateful for the support she received while she was undergoing active treatment, but feels that more follow up care would have helped, particularly with worries about finances:
Once you've been diagnosed, everything happens so fast. Your head is in a spin. I wasn't even thinking of the financial side of it at that stage. You've got all the support, you've got your oncologist and your radiation oncologist you can talk to, you've got your specialists, you've got your GP, you've got your breast care nurse. After everything's over, there's nothing. And that’s when sometimes it starts to hit you. Everything's crashing in on you and the financial impact's really hitting home and you've got all that to worry about.
In spite of the struggles they face, Helen is grateful to be here and able to spend time with her husband and her daughter:
I know we struggle but what gets me through is just thinking, 12 months ago there was a fear I could have died, but I didn’t. Fight on. Every day, fight on. It's only money. I know it means stress but it is only money compared to your life.