When I first heard the words of the famous COVID-19 poem ‘We are not in the same boat‘, I thought that the text could so easily be adapted to the vast and stark uniqueness of one’s cancer experience. “I heard that we are in the same boat. But it’s not like that. We are in the same storm, but not in the same boat. Your ship can be shipwrecked and mine might not be. Or vice versa”. If you have had a personal experience with cancer, I know that this anecdote will ring true for you.
To say that financial strain is stressful would be stating the obvious. Financial strain, when combined with a life threatening illness, can be hugely debilitating. When you are in the depths of stress and strain, it is important that you seek some expert (and easy to process) advice. I have separated this blog article into two parts. In this first instalment, I am sharing my perspective and the fantastic advice from my cancer mumma community. In the second instalment, I will share advice from an expert who has put together some fantastic information to point you in the right direction for an easier financial journey. I hope this content provides you with at least one helpful piece of advice, guides you to a useful link, or even inspires you to commit to reviewing your insurance.
Financial strain is a side effect of the ‘cancer storm’ and everyone is in a different boat. Even those with the same cancer. We all enter our cancer journey with our individual financial status. Our age, years of employment, relationship status, income protection and insurance policies (if we have them), number and age of dependents, bank balance, assets, expenses, and ability to access personal and financial support will all contribute to our financial stress or security.
My first top tip is that an assumption about someone’s financial status is just that- an assumption. Occasionally those people that you least expect to need financial support, really do need the support. This is as an important reminder for those in health and human services.
Everyone has their own unique cancer experience, no two journeys are the same. Some adults of working age find that they are able to work throughout their treatment, others have a minimally invasive surgery and return to work within a few weeks, while others have lengthy treatment regimes that include surgery, chemotherapy, radiation and protracted hospital stays. Generally speaking, the longer and more complex the treatment, the greater the time off work and the heftier the financial strain. Typically the costs associated with cancer are not purely linked to a loss of income.
Where do the costs come from?
The costs associated with cancer can be sizeable. For many people there are out-of-pockets costs even in our generous Australian ‘bulk-billed’ medical system. Many people have a gap to pay for medications, scans, medical specialists, private hospital fees, counselling, psychology, relationship counselling, parking fees, travel, accommodation, physiotherapy, occupational therapy, speech therapy, dietitian, exercise physiology, wigs and other items such as breast prosthetics and compression garments, and even legal fees.
If you are exploring holistic medicine, hold on tight! Functional medical doctors, mora therapists, naturopaths, herbal medicine specialists, kinesiologists, bowen therapists, acupuncturists, chiropractors, osteopaths (and those are just the ones that I have used) all come at a cost. You may be thinking ‘well, that’s optional and a personal choice’. I’ll talk to this when I share my experience later in the article.
In Australia the cost of care also varies between states and specialists. For example, in some states certain scans are routinely bulk-billed, while not in others. In some states people are required to pay for ambulance cover whereas in other states it is free (incorporated into taxes). If you access private medical care the out-of-pocket fees will vary for medical specialists, even within the same practice. If you have a private surgeon, chances are that you will pay an out of pocket fee to the surgeon and also to the anaesthetist.
Another major cost is related to outsourcing of tasks, chores or responsibilities that you need help with. If you don’t have a village army ready in the wings you may need help at home with cleaning, preparing meals and snacks, mowing the lawn, shopping, walking the dog, transport to and from appointments, additional childcare or babysitting, and respite for your carer. While we are lucky to have a lot of health and community funding in Australia, the community care funding bucket is predominantly for the over 65’s and those with a permanent disability. While the reality is that the public purse can only stretch so far, it is a hard pill to swallow when you need the support.
The cost of my cancer
Relatively early into my cancer journey, I found myself needing to come to a place of acceptance, and acknowledge that cancer was an expensive experience. I had only been back at work for six months after my second maternity leave in two years. My husband had just recently started to work full-time after working part-time for five years to complete his PhD. As I mentioned early in this piece, everyone’s situation is unique.
My income dropped by 25% when I accessed my income protection. Next were the surgeon fees, anaesthetists fees, private hospital admission fees and additional day care at $100 a day (childcare funding has since improved thankfully).
With our family reserves and capacity at an all-time low, we had to embrace outsourcing. We were so lucky to have amazing friends and colleagues who delivered numerous meals and supplied us with beautiful meal vouchers. We purchased additional meals when we needed to, which was most weeks for at least 3 – 4 months. We were fortunate to have some cleaning sessions supplied by the amazing Mummy’s Wish and then we continued to fund intermittent professional cleaning when we needed. My incredible work colleagues pitched in and we were able to purchase much needed garden maintenance to reduce a huge load for my husband. We were immensely blessed by our community, and the acts of kindness that we experienced really did make many pretty rotten days – doable.
After I had used the sessions of my chronic disease management plan, my out-of-pocket allied health care fees were rapidly adding-up. I needed a dietician, osteopathy and physiotherapy. I also paid for acupuncture, naturopathy, kinesiologists, bowen therapists and a functional medical specialist. My medical expense pinnacle was paying $850 to see a functional medical doctor which included the one consult and supplements. Gulp!
I decided to stop counting at around the $30,000 mark. Did I really need all of the alternate therapies- the acupuncture, the naturopaths, the functional medical doctor… and, and, and? Well, most of the therapies helped me to reduce my symptoms somewhat- and some more than others (thank-you acupuncture). When I was laying in my bed with my world caving in, and feeling hopelessly devastated that I couldn’t look after my boys… I would have tried ANYTHING to be well again. So yes, to me- I needed it. Do I know if the therapies sped up my recovery and which ones worked- not exactly, but I do have a fair idea which ones worked. Can I be certain- no, but I did what I felt was right at the time. In hindsight, would I make any changes – yes I would have focussed more on acupuncture, outsourced more and reduced the number of appointments that I had.
If you have been following me for a while now, you will know that I like to share the wisdom of my cancer communities (they have all of the good stuff). I have collated a list below with some incredible advice. A huge thanks as always to my cancer communities.
What Cancer Mummas say
“Check your super income protection! I was lucky that I’d been with the same superfund for years and they waived the waiting period. They covered me from diagnosis date. It’s been a lifesaver for me. Ask for quotes and most clinics offer payment plans”.
“Check to see if you have any old superfund policies laying around. You may have access to income protection or trauma/disability cover that you didn’t even realise”.
“Speak with the social worker from your hospital of diagnosis rather quickly as they can help with so many things you don’t think about, aka funding for daycare and before and after school care so you can heal at home”.
“We found out that my husband’s policy covered me for trauma. We were so lucky and that lumpsum has covered a lot of my out-of-pocket costs”.
“All the incidental costs quickly add up – from scans to unexpected hospital visits, but on an ongoing basis for doctors appts and medications/injections. I’ve started using my ING savings acct to set aside funds for those incidentals over time. On another note, having a diagnosis really does kick you into gear on ensuring your family is going to be looked after if anything happens to you. My will is very clear around my expectations and what will happen with my finances/savings”.
“Asking for certain medication, my chemo Dr would give me a script for ondansetron, but under radiation I could receive it for free – so always ask what’s available. They also supplied things for my radiation burn”.
“Get your doctor to write ‘bulk bill’ on your scan requests. Then the scan company bulk bills and no out of pocket cost. Has to come from doctor on the form though (my oncologist writes it on all forms and I’ve not paid for a scan since seeing him despite using a private scan company)”.
“I have been in the public system my entire journey and have to say I’ve been really impressed by what’s been covered – we’ve been a bit out of pocket (maybe around $1,000ish) but haven’t felt too much financial strain thanks to the income protection”.
“Talk to your bank…ours let us put a temporary halt on our mortgage”.
“Take your prescriptions to chemist rather than getting filled at (private) hospital pharmacy. Difference in cost for my daily meds is about $15/month which quickly adds up when you are on them for months”.
“A small thing, and may depend upon your employer, but I work most days and just take off the actual hours that I’m in treatment or needing rest. Eg some days I’ve done 2 hours work then headed to Oncology, so I only put in sick leave for 5.5hrs. Or if I end up catching up on the work in my time, I don’t take any time off. All part of flexible working”.
“Didn’t think I’d ever need to claim on income protection through my Super. Found out there is a 90 day waiting period. There are options available where you can pay a premium that can reduce that waiting period”.
“My friends organised meals for our family through Mealtrain. It’s been amazing and have had sooo many kind people from our community cooking meals for us”.
“Having critical illness cover is a necessity. It costs a few hundred dollars a year but covers you for a huge amount”.
“I’m receiving income from my superfund which is paying 90% of my wage until I’m cleared to go back to work. Thankfully I have this as medical expenses are going through the roof.”
“Phone companies, electricity companies, banks, and loan companies have financial hardship schemes. Contact them to organise”.
“The Cancer Council offers some financial support depending on what state you are in”.
“My dentist has a cancer plan where they take 50% off for all cancer patients”.
“If you’ve got HECS debt and receiving income protection insurance be prepared for a tax bill (or ask your employer to take more tax out). I’d already mentally spent my tax return counting on getting a couple thousand back….instead I got a bill of the same amount”.
“There is an organisation called Dreams2Live4. If you are a cancer patient with metastatic disease they make your dream come true (wedding, photography, travel). You will need to be referred by your oncologist”.
“Young Pink Sisters for women under 50 diagnosed with breast cancer assist with reimbursing associated medical expenses”.
“Through Mummys wish I got an in home childcare Educator with the Centrelink subsidy ACCS”.
“In Brisbane we have received help from a new charity called Serving Our People. They have helped me with cooked meals the family”.
“I spent time with a financial advisor on my super insurances a few years before my diagnosis and wow am I glad that I did”.
In my next blog piece I will share Part 2- Financial advice from an expert in the industry. You wont want to miss it, so make sure that you are following me for your next instalment!
The Survivorship Diary– an amazing piece of work by Cassandra Bennett, a brain tumour survivor
Thanks for reading.