Handy Tips

  1. It pays to do research of your own. All the information I have provided in this blog is a share of my personal experience after feeling that I had to learn a lot of things the hard way! I hope that it will save someone else the headache of learning some things the hard way too, however everyone’s journey is different and you may not encounter any of the same issues. If you have your own experience to share it would be greatly appreciated – I feel there is a lot to learn from other patients who have been through similar experiences.
  2. Always keep a record of every meeting and phone call you have with anyone relevant to your cancer journey, e.g. medical professionals, Centrelink, financial providers etc. It may seem like you are being too cautious, but you never know when you are going to need that information. I kept the habit of carrying around with me a little A5 sized note book. It was easy to have on hand in my bag and it had important details listed, or conversation briefs re-written, in case I received a phone call whilst out and about.
  3. Always ensure both parties involved in every conversation 100% understands each other. Always relay back to someone you have spoken with/ had a consultation with what you have understood and either have them agree with you or have them explain again. If you are not 100% sure that both parties are on the same page, do not let it go! And keep a record of what was agreed at the end of each meeting.
  4. Always review forms that are filled out by others. Never assume that the doctor or consultant knows best! Do not leave their office until you are both 100% comfortable with all terminology and both of you have agreed to the contents of any signed documents. I certainly learned this the hard way when I had a doctor fill out a medical form that I needed to provide the RTA in order to be cleared to drive again… Upon arriving at the registry, the woman entering my drivers’ medical clearance pointed out to me that the medical form said I was epileptic! It was a simple mistake and I try to point out that the wrong box on the form had been accidentally ticked (“Brain cancer! Not epilepsy!”), however it had to be recorded and I had to return again with a letter from the doctor stating they had made a mistake.
  5. Don’t be shy to be vocal about your financial situation. Many people have a problem with how others perceive them and would rather act as though they have their situation sorted than ask for help. Don’t fall into this trap! People cannot guess that you are living under a tighter budget or that you could use their assistance with food, bills etc. At this stage, your health is priority number 1 – your pride should never get in the way of this. Let people know what is really going on for you and be willing to accept any help they may offer. If you are having trouble with this I strongly recommend seeking out help from a professional counsellor – it certainly helped me!

 

What NOT to do

  1. Do not sign up to a small loan such as Nimble, Wallet Wizard etc. The interest rate associated with these small loans is not worth the small amount of cash they ‘guarantee’ to you.
  2. Do not sign up for funeral insurance immediately out of concern that your family will not be able to pay your funeral costs. There are plenty of other ways to ensure they will be provided for without signing up for an insurance scheme. The less insurance fees you need to pay the better!
  3. Do not sell off an asset you may not need now but will in future, such as your car or a treadmill. These might provide you with a decent sum but you may regret it in the not too distant future if you haven’t considered all situations when you may need it. Think very carefully before selling anything you own!
  4. Do not take one person’s opinion as gospel. It’s your body and your choice – professionals should always respect this and should assist you with seeking alternatives to consider before locking down a decision.Do not forget that this experience is all about YOU! Don’t feel pressured to just accept advice. If there is anything you are unsure of, or even if you just feel a gut instinct against what you’ve been told, don’t be afraid to look into it and let whoever you are dealing with know that you are not 100% sure or confident in their suggestions. Anyone that tries to force an immediate response from you is pushing you too hard – give yourself the time to consider what they have said, do your own research and feel confident in the decision you make.
  5. Do not assume forms that have been filled out by professionals are always correct. Always review every form you are given and ensure you agree with what the professional has included. Anything that doesn’t seem right or that you are a bit unsure of should be discussed before you leave their office!
  6. Do not favour phone calls over written correspondence. Although you may be diligent with recording the key points agreed, don’t assume that your phone call is always being recorded and can be used as a reference later. It is always better to have a paper trail to demonstrate what you agreed or planned etc.

Desperate times call for a little creativity…

If you are looking for some ideas to generate a little extra cash in a hurry, the following is a list of my attempts. Some were successful, others not so much – the key for me at the time was that I wanted to ensure that I really had exhausted absolutely every option I had available. At the time, I had a bit of trouble accepting help from others (luckily my therapy sessions helped me through this), so these were some ways I tried to ‘squeeze every penny’ when I was having a moment of financial panic:

  1. Rent out your spare room (if you have the option) or Air BnB your place whilst you with family or friends for a while
  2. Cash in your assets – I had some jewellery that I knew I could cash in if I ever got really strapped for cash, however most items I couldn’t part with as I knew I would never be able to sell them quickly for a price anywhere near their actual value. I contemplated putting them up for auction online, however the fluctuations of price I saw on eBay gave me cold feet. There was, however, one plain gold chain I was willing to part with, so I decided to shop around a few ‘cash for gold’ outlets around the CBD until I found one that gave the best price – and it was a decent price too! It was a pretty straight-forward and stress-free event.

I also had a few clothes that I had stashed at the back of my wardrobe that I would never wear again in my life but that I never donated because they were unique designer pieces. To this day they are still in my wardrobe, however I was tempted to put these up on eBay after seeing the prices that such items could attain.

  1. Find odd jobs for quick cash – (Airtasker – I had trouble with this due to lack of reviews, Fiver – generally need to have technical skills for this one, Gumtree – I had no luck finding my dream job of cat-sitting – you also need to be aware of being around animals when you’re sick so volunteering was a no go at the local cattery. Be careful when playing with other peoples’ pets). Remember that taking up a second job has tax implications so I would recommend trying to take on small tasks that are viewed more as ‘favours’ than a job.
  2. Try to skimp on spending – (“health-soup” recipe for desperate times, take people up on offers to cook for you/ go over to their homes rather than go out, cancel your gym membership sooner rather than later – when you’re in treatment you’ll need to avoid getting sweaty in a public place, so you’ll be out of action for several months anyway. Don’t let this deter you from exercise! Start planning ways in which you can work out from home or around a local park rather than inside a gym)

Falling behind on your mortgage repayments (and other everyday expense issues)

The year of my diagnosis was also the year my partner and I took out a mortgage for our first home. Needless to say, the timing was not ideal! Although our repayments were not excessive to begin with in comparison to many other young couples taking out their first major loan, in terms of monthly expenses it was certainly our largest. It was therefore our primary concern following medical expenses and added to our financial stress. After having an upfront and honest conversation with our creditors, we were able to negotiate a delay on our repayments – a very lucky break for us for which we were extremely grateful.

If you have a home loan/ personal loan/ other loan repayments, I would recommend speaking with your financial provider in person to discuss repayment flexibility options – it never hurts to ask what they can do to help and their response might just surprise you!

Our repayment delay was an enormous weight off my mind and allowed me to focus on myself and getting through my treatment. I have heard that services such as ‘My Budget’ can deal with your creditors directly for you if you are not in a position to do this yourself – this is not something I did personally, however I would recommend avoiding the enlistment of such services if you can (to avoid unnecessary on-costs).

How your employer can help

One of the most stressful elements of falling ill is wondering what is going to happen to your career plans or your job security. Coming from a self-titled control freak, I understand completely how debilitating it feels to worry about your job (see my piece on “Career vs Illness”). However, keeping your employer in the loop is extremely important to ensure you can work together to find solutions to your concerns as quickly and efficiently as possible. In the end, my relationship with my employer was crucial for my overall wellbeing on my path to recovery, so I implore others out there to remember these three key points:

  • Know your rights
  • Ensure you keep your employer well informed of your situation as soon as possible
  • It pays to be considerate

 

I had been employed with the same company in various different roles for 6 years when I was initially diagnosed. The team I was with at the time I had been part of for 4 of those years, so I was well acquainted with everyone and felt completely comfortable speaking very candidly with the senior staff members. It should be no surprise then that as soon as my initial MRI showed a tumour in my brain, I called my boss right after I called my mother! I understand that others may not have such a close relationship at their workplace, and the news of being diagnosed with cancer is something they would avoid becoming public knowledge at work as late as possible. Some may be concerned about the uncertainty of the implications having cancer has, such as the implication that you may need to take a significant amount of time off work. Will your boss approve of this absence? Will your colleagues be empathetic when they have to take on your load? If you return to work, will your performance be affected by the trauma you have just endured?

Rest assured, no matter what your relationship at work is like, your employer is required per the Fair Work Act to take reasonable steps to assist you during treatment. They cannot dismiss you if your absence is less than 3 months in one year and you have provided medical certificates outlining your situation. This 3-month period will generally exhaust your sick leave entitlements, annual leave entitlements and any other leave entitlements that will be outlined in your employment contract, as well as include a period of unpaid sick leave. Even if you need have exhausted all your leave entitlements and require more than 3 months of leave, your employer may still not be able to lawfully dismiss you.

Anyone who feels their job security is at risk, or feels pressured by their employer to be cut-off, you are perfectly within your right to present your case by submitting an unfair dismissal application or general protections claim if you are dismissed on the grounds of your disability. I strongly encourage anyone who is unsure of where they stand from a legal perspective with their employer to contact the Fair Work Commission on 1300 799 675 to have a discussion about your rights. Remember if you wish to dispute an unfair dismissal, you will need to do so within 21 days of being dismissed, so I strongly encourage that you get in contact with the Fair Work Commission well in advance to avoid unnecessary stress.

~

As I was very lucky to feel secure in my job and I had a close relationship with my team, I was also blessed with additional perks. The moment my team knew about my situation, not only did they send me flowers and cards, but they also offered to pay for a cleaner to maintain my apartment each week. It was a very kind gesture and although my apartment was very small and easy to maintain myself, it was one less thing to worry about (and it did feel great to have a spotless home environment all the time!).

My partner’s mother, who was in the process of battling aggressive breast cancer, referred me to her naturopath who in turn supplied me with many different daily vitamins and supplements, as well as a ‘FODMAP’ diet plan to abide by to ensure I would recover as quickly as possible from my upcoming treatment (see my piece on “Healthy Living” for full disclosure). The diet required me to be creative with meal choices and to boost the variety of the food I was eating, as well as purchase organic foods only. As I started to find new recipes to fulfil the diet brief, I realised that the cost of the ingredients were starting to add up and I wasn’t sure whether it would be feasible to get the variety I was advised I needed on my current budget. When I voiced these concerns to one of my managers and two of the head partners of my team, I wasn’t sure how they would react. I knew I needed more money, but they were already providing me with a cleaner. When they told me they would pay for my groceries as well as a cleaner, I was overwhelmed by their generosity and thought I had certainly reached their threshold (after all, my team is not the highest power in the firm and they had policies in place as to what sort of hand-outs they could provide to staff during separate times).

It was when I started accumulating debt following my dental surgery and all the other additional activities I was under-taking to ensure my health was at its peak (to the best of its ability) that I had to turn once again to my employer. I was feeling very discouraged after being rejected by Centrelink, I couldn’t get any odd-jobs and I had already become poor enough to have to sell some of my jewellery, so I asked my employers whether there was anything further they could do for me. They knew I had been diagnosed during the worst possible time – I had just entered the property market and therefore had a mortgage to pay, but I also had one last set of exams to pass before I could be promoted, which were due to be sat whilst I was undergoing surgery to remove my tumour (so those exams had to be delayed until I was through treatment). The salary continuance scheme they had in place was based on the salary I was earning at the time I was diagnosed, and although they tried to negotiate changing the salary base to what I expected to earn at the time, unfortunately the insurer could not make this happen. I was desperate and they were very concerned about my wellbeing at this point – they knew I was struggling and I was exhausting all possible options available to me. In the end, they worked together to devise a solution – I would have my salary continuance cancelled and be paid at the rate of my previous job title held with them (which worked out to be $20k more before tax), thereby providing me with enough money to not have to choose which additional treatments I couldn’t afford to continue.

Again, I am very aware that my situation with my employer is unique and I do not expect many others will be as lucky I was to be part of a team that had the ability to be so flexible in accommodating my needs. However, they key take-away is that it pays to be completely open and honest with your employer. The sooner they become aware of what is going on for you, the sooner they can make arrangements to work around it. I like to think most employers will be very sympathetic towards your situation, however if you are unsure about how such news will be received, remember that you are protected against discriminatory behaviour by Australian law and have every right to dispute any unfair treatment.

Fundraising

The kindness of strangers will always surprise you. My best friend was the first to offer establishing a ‘GoFundMe’ campaign when she heard of the struggles I was having with Centrelink. As a naturally shy person, at first I wasn’t too keen on the idea. I knew most of my closest friends did not have much disposable cash (if any) and I didn’t know to what extent distant acquaintances or even complete strangers would be willing to part with a portion of their hard-earned salary. Did complete strangers really fund these campaigns? As I started reading through some other campaigns that were already established for the many, many other people out there who were suffering from conditions worse than mine, I felt it wasn’t my place to try to compete with them when I was already feeling so guilty for not being able to donate to them myself. I couldn’t shake the idea that if I couldn’t help all the other people out there, then I could at the very least not take potential funding away from them by having my own campaign launched.

A couple of weeks later I had coffee with some colleagues of mine who pitched the same idea. I relayed to them my concerns and they then asked whether I would be comfortable with such a campaign being circulated around our office only. I began to consider this proposal, however I also knew that in the time I had been away from work, a lot of my closest colleagues had either left the company or had taken up an overseas secondment. Upon looking at our most current employee listing, I realised nearly half of the staff members had joined after I left and therefore would have no idea who I was. It felt very much like asking complete strangers for underserved help, despite my colleagues trying to reassure me that I was in all of their mind every day.

In the end, the most senior members of my team banded together to pitch in enough money for me to completely clear the debt I had accumulated from the treatments I received. It was an extremely humbling moment as it came at a time when I was losing hope and feeling overwhelmed by financial stress. To have that weight taken off my shoulders gave me the strength to centre myself once again and stay focused on my goal of beating cancer. It also was the reminder I needed that my worries of becoming obsolete were completely invalid and that my team were still there, waiting patiently for me to take as much time as I needed to regain my health and return to work in full form. It was a truly touching gesture that reignited my pride in my work and the ultimate demonstration of how generous people can be.

Everyone needs help at some stage in their life so there is no shame in admitting when it happens to you. No matter how proud, shy or alone you feel, don’t shut others out thinking you’re doing them a favour. Establishing your own fundraiser can feel very daunting or even slightly narcissistic (you’d be surprised how hard it can be to talk about yourself on a public forum) so if you can get a friend to write your story up for you I would highly recommend it. The funding I received out of the charity of others was the only thing that stopped me from becoming completely financially screwed, so don’t forget that when you’re diagnosed with a serious illness you should be embracing every opportunity you have to seek help from others in order to get yourself back on track.

Receiving my diagnosis

My partner is a film director so I feel I have watched more movies than the average person. Which means I have watched an on-screen, dramatic reveal of a patient’s cancer diagnosis many times. The doctors always tend to look solemn as they draw a curtain around the patient’s bed, clutching a clipboard tight with both hands as they deliver the predictable “this is so hard for us to tell you, but…”. A scene that I’ve watched so many times that I became completely desensitised to the gravity of the whole situation. So when my diagnosis was delivered to me in the exact same fashion – curtain drawn, clipboards clutched, exact opening line – it didn’t really hit me at all. Despite my partner, who up until this point had been holding himself together rather well, being reduced to tears almost instantly, I still didn’t really grasp how serious the situation was. The doctors explained a malignant tumour with a diameter of 5cm could be seen from the MRI they took. In my mind I interpreted that as something the size of a 10 cent coin and thought that was good news. They told me it was closer to being ¼ the size of my left hemisphere. “Oh… that sounds pretty big” – I said it still not really understanding its size.

Fast-forwarding to today when I am undergoing chemotherapy treatment, it is difficult to reflect back and say when the gravity of my situation actually sunk in. I’d like to say it was when I was called into my neurosurgeon’s office just prior to my craniotomy two weeks later to see the images taken from that initial MRI. Physically seeing this gigantic mass in the front of my head that had squished the rest of my brain to the point where all the crevasses you would expect to see had been pushed into one rounded ball made me wonder how the hell I was still alive or functioning. I knew I felt 100% and had experienced no symptoms prior (emergency-room inducing seizure aside), but seeing that cancer mass in the flesh (literally) definitely sunk in that it was real. Its existence confirmed that everything was actually happening, unlike the dream-like haze I’d been wafting through up to that point. The tumour was certainly big, but even that wasn’t enough for me to understand that it was life-threatening at that point.

Truthfully there was no one point during the whole process of my cancer journey that I can say was that ‘Hollywood’ moment, where all the stars aligned and I finally understood what it felt like to know the weight of my own mortality. This is because, for me, it didn’t happen in one single moment – it happened on several occasions grouped together in what I can describe only as a roller-coaster of emotional impediments that made me question every choice I had ever made in life to end up where I was in those moments. I can narrow them down into four simple stages:

  1. When I understood that my career goals were going to be set back (or never achieved)
  2. Struggling financially and the stress of wondering what would happen to my partner if I wasn’t there for him anymore
  3. Facing the reality that I may die before I get to have children of my own and raise a family, or be there to experience other milestones of my friends and family
  4. When I contemplated taking the ‘bucket-list’ approach to my life and ending it on my own terms (after following many stories covering Brittany Maynard’s chosen path)

Each of the above is listed not only in the order that they occurred for me, but also in order of severity in terms of how much harder I was hit by the looming cloud of my ‘inevitable’ death. By the time I had considered a bucket-list I knew I wasn’t coping as well as I had made out to everyone else around me. From the outside no one could know what was going on for me when I was constantly smiling and keeping a positive attitude up. Little did they know that there is a fine line between maintaining a positive attitude and living in flat-out denial of your situation. I think at most times I had even convinced myself that everything was fine, yet from the inside I knew I was beginning to crack not only from the challenges I was facing, but the feeling of doing it alone, as though I had to bear the burden myself in order not to worry anyone else or cause reason for panic from my family and friends.

In the end I was blessed with a therapist that not only enabled me to acknowledge everything I was feeling at the time, but to learn where my feelings came from and to not be ashamed of them or try to suppress them in any way. I began to learn a lot about co-dependency very quickly; a subject that now fascinates me and has helped me to understand so much about my behaviour and my relationships with others. It soon became easy for me to recognise how much I had grown in terms of personal development with each therapy session I had, and I consider myself very lucky to have such support in place during such a difficult time. I was especially lucky to also have my partner attend sessions with me – a practice that certainly helped us strengthen our bond, even though I thought at the time it couldn’t be stronger! I highly recommend couples’ therapy to anyone who is going through such a rough patch, it certainly proved to me that there is always room for improvement in every relationship no matter how close you may be.

I had nearly given up on everything; I was telling myself I had no reason to be sorry for myself because my fate was inevitable, unavoidable and I should therefore just spend the rest of my ‘very limited’ days left ensuring I would leave this world with no loose ends. I had my will officiated, I pushed to clear all debts I had outstanding so that no one would inherit a financial burden, I ensured my life insurance would be distributed as I wished. I started writing letters to each of my family members and friends just in case my death came unexpectedly. I did everything to ensure my death would be as efficient as possible as I felt there was no escaping it anymore. Death was inevitable.

During that time, I felt I was just doing what any responsible adult would do having received news they had brain cancer. I didn’t think I was harming anyone in the process; how could I be when all I was doing was ensuring everyone I knew would be taken care of to the best of my ability after my death? However, one day I explained this to my therapist and she pointed out that, from her perspective, I was already deciding whether I deserved to live and that, from the actions I was taking, it appeared I didn’t.

This was the trigger I needed – I realised in that moment I was still in control of my own choices and I was choosing to put the needs of others above my own needs. It’s a habit I’ve always had, but I never realised the impact it had on my mental state. It was time to put myself forward and ensure I was meeting my own needs first, starting with the decision that I deserved everything I was afraid of losing – my partner, my career, the children I may never have – and that I was not going to give up on it without a fight.

So whilst I am definitely living my life with a bit more excitement in it these days, and I am taking out more time to enjoy the things I tended to push back on (usually due to work commitments), my ‘bucket-list’ does not have an expiration date anymore. I may live to tick everything or nearly nothing off that list. Who knows? Either way, as long as I am happy I don’t really mind what happens next – no one will ever achieve everything they want in life, and the things I have done to date I couldn’t be prouder of. So despite no ‘Hollywood’ epiphany, at least I can ensure I’ll always have a happy ending.

Cancer Council

During a consultation with a social worker who was assigned to help me with my financial situation at the Chris O’Brien Lifehouse, I was informed about a small fund offered by the Cancer Council NSW. This was an emergency fund to assist with paying utility bills up to $250 for those who are struggling financially. It is a relatively straight-forward process by which you submit the invoice you have on hand to the Cancer Council and they will pay it on your behalf.

There is also a $1,000 loan they can offer, however there are strict conditions attached with this and it is only provided in extremely dire circumstances.

I decided to check what other financial assistance the Cancer Council could provide and noted there is a program called CAN Assist (Cancer Assistance Network) for rural patients, however unfortunately I was unable to find anything beyond these three payment options.

Understandably, as the Cancer Council is funded by public donations, they provide assistance by paying for bills provided by cancer patients – they don’t offer cash payments to patients directly to pay for these themselves. So if you have an invoice on hand that needs to be paid, I recommend contacting the Cancer Council to seek their assistance.

TPD Payments and Superannuation

I was diagnosed with cancer when I was 25 years old. At the time, I did not have health insurance. However, I knew that I had a life insurance policy in place through my superannuation provider, MLC, as I ensured I nominated my partner as my beneficiary before I had surgery to remove my brain tumour. After visiting Centrelink for the first time (and realising I was in for a long wait before I would receive any funding) I thought I should research whether I could get access to any compensation from my superannuation provider.

I started looking into a TPD payment under the advice of a friend, however I was a bit uncertain about applying from the description of ‘Total and Permanent Disability’ outlined on the website of my provider. My concerns were validated when I called them directly – in order to be eligible for a TPD payment, you need to be totally and permanently disabled from your illness, which did not apply for me as I was receiving treatment under the assumption that I would eventually be completely capable of returning to work without impairment, therefore I was not expected to be ‘totally and permanently’ disabled.

There was the option to apply for early access to my superannuation on compassionate grounds through the Department of Human Services. I was already in the process of applying for the DSP through Centrelink so I was awaiting their response before applying for early access to my super balance which, to be honest, wasn’t exactly a fortune considering I opened my superannuation account only 6 years prior and I had not earned a lot during that time.

Also, given that my employer had a salary continuance scheme in place for me already, I couldn’t claim any income protection policies in place. So although I was not receiving enough money each month from the salary continuance scheme in place to sustain a basic standard of living, there were no additional payments I could gain access to from my super provider.

Unfortunately, I feel claiming compensation through your superannuation provider as a young person can be rather fruitless given you may be too young to have accumulated much of a nest egg, in a junior position in your career and therefore not earning a whole lot, or were unprepared for any medical emergencies to occur this early on in your life and therefore do not have insurance policies in place to protect yourself. However, there is absolutely no harm in inquiring as policies do tend to vary depending on who your providers are. It pays to have confirmation of what you are entitled to so I certainly recommend inquiring with your superannuation provider or other insurance policy providers you are involved with – even if you are not eligible for any payments, at least you have ensured you have checked all possible options.

Centrelink

Centrelink was the first place I was referred to when it came to seeking financial assistance to help pay for my upcoming medical bills. Since leaving the emergency room all the way back in early August 2015 when it was first discovered I had a brain tumour, my partner had been instructed to take care of me “24-7”. Although he was freelancing from our home office, his work was badly impacted from the stress of our situation, so we went to our local Centrelink office together with the intention of applying for the ‘Disability Support Pension’ and ‘Carer Payment’.

Prior to our first visit, I used Centrelink’s online ‘payment finder’ in order to deduce what options were available for a young couple with no health insurance and a low combined income such as ourselves. On entering my information, 11 different types of pensions or supplements were suggested (all the way from breast prostheses reimbursements to continence aids), from which I listed 6 that would apply to my circumstance. My partner had 14 options, so I was feeling rather confident that I had just saved our Centrelink consultant a lot of time by narrowing down what was applicable to our specific circumstance.

How wrong I was. From my list of 6 options I thought would apply to me, the following was relayed to us:

  1. Disability Support Pension – Not applicable. A warning for any patients that are hoping to apply for this pension – we were advised by a Centrelink consultant that it is almost impossible to attain. When inquiring about this pension, we were shocked to be faced with the question “how long have you got left?”. I had with me a booklet that was provided by my neurosurgeon that outlined information about my specific type of brain cancer, as well as grim statistics concerning the prognosis, but I did not actually have any written confirmation of exactly ‘how long I had left’. Unfortunately, without a letter from my neurosurgeon stating that I was ‘terminally ill’, I did not qualify for the pension. When I asked “what exact length of time denotes a terminal illness?”, I couldn’t get a straight answer. 1 year? 2 years? Less than 1 year? As long as the letter stated “terminal”, it should be enough (“hopefully”). Never mind the complete loss of hope I would be tormented with each night at the thought of a medical professional declaring me “terminally ill”, thus convincing myself that I should just give up now. The thought of even having to ask my surgeon whether she would even consider writing such a letter terrified me, because if she didn’t have a problem with it, did it mean that I really did have only months left to live? It was a question I didn’t want to raise because I didn’t want the outcome of the answer to impact my goals of beating cancer. So I refused to ask my surgeon and therefore could not get the Disability Support Pension. My advice to other patients that will be faced with the same question if they apply of this funding – make sure you are prepared to be asked this question as you may find it more confronting that you expect. Also its good to note that if you are deemed terminal by your doctor, Form SA473 outlines this as a period of 6 months or less, however this is still unconfirmed by Centrelink.The other blockade I faced in relation to the DSP was the fact that you can only apply for it once your medical condition has been ‘fully treated and stabilised’. I had many discussions about the meaning of “fully treated and stabilised” with several Centrelink consultants and my doctors, however in the end it was decided that I was not eligible for the pension until I had finished the course of radiotherapy and chemotherapy that was planned for me – despite the fact that I was in their office seeking financial assistance in order to pay for said treatment.
  2. Sickness Allowance – Not applicable. This is due to the fact that my employer had a salary continuance scheme in place in which they would pay me $1,011 per fortnight, which was over the maximum fortnightly threshold of $934.17 for a partnered couple under the Sickness Allowance scheme. As a single applicant, the threshold would have been $1,021. There was some discrepancy amongst the consultants about the conditions surrounding my eligibility; some of the consultants thought that ‘income’ did not comprise of money paid from an insurance policy in place and therefore I should be eligible for this as I had exhausted my sick leave and annual leave payable by my employer, whilst others noted that the money was physically paid to my employer first who then would forward it to me in the form of an out-of-cycle salary payment, therefore it was technically still income from my employer. In the end, after several follow up consultations about this, my application was rejected.
  3. Mobility Allowance – Not applicable. This is because this allowance is only applicable for travel to and from home and your place of work or study. If you need to take public transport to get to your doctor’s practice or to a hospital and you cannot because of your disability, tough luck – there isn’t a pension for that.
  4. Low Income Health Care Card – Provided to my partner when he was granted Carer Allowance/ Payment. What does this card entitle you to? Discounted medication (helpful for Temozolomide but not for any supplements as advised by a naturopath which are not considered medications, for example Astragalus Complex or Withania etc). It can also be used for certain concessions such as electricity or water bills so I would definitely recommend applying for this.
  5. Energy Supplement – Only applicable for my partner. As the Energy Supplement is applied in conjunction with another payment or allowance, I wasn’t eligible for this as I wasn’t eligible for the DSP or Sickness Allowance. However, my partner received this along with his Carer Allowance at a rate of $21.20 per fortnight.
  6. Low Income Supplement – We were already claiming this through our tax returns at year end.

My partner seemed to have more luck and was advised that he could be eligible for Carer Allowance (a flat-rate $123.50 fortnightly payment for being my full-time carer. Note that this payment is NOT back-paid to the date that you commenced caring for someone – it is a payment you receive from the date you first inquired and subsequently applied for it), a Health Care card (which came with the eligibility of the Carer Allowance), Carer Supplement (a flat-rate, once-off $600 payment), and Carer Payment (which is back-dated to the date you became a carer).

Our consultant from our initial consultation advised that I should apply for the DSP even without a letter from my neurosurgeon and provided us with all the forms we needed to complete and return. Within our pile of forms was a medical assessment for the carer, which my GP needed to complete in order to determine the level of care I needed. I had with me a letter from the hospital stating what level of care I needed (it literally stated I needed someone with me 24-7 in case of another seizure occurring), however this letter was completely dismissed as, as you will learn, Centrelink can only accept the forms they provide and create a profile of your circumstance based on the boxes you’ve ticked. So when this form was completed with all honesty, that being, that I was dependent on somewhere being with me only when I showered (since my initial seizure occurred when I was alone in the shower), I was instantly rejected. When I returned to ask what I am supposed to do next, the consultant I saw advised I should return to my doctor and have her fill out the form again “with your worst possible condition in mind”. It was not about what care I currently needed, but thinking about what care I could need should the worst happen (i.e. I was advised to imagine I was completely incapacitated from the effects of radiotherapy/ chemotherapy and think about how much assistance I would need at that point).

When inquiring about Carer payment, it’s important to note that eligibility is assessed based on combined income. This policy frustrated me as I thought my friend received this payment when she was caring for her mother and therefore could not have had her income assessed as combined with her mother’s (this was my mistake – she later corrected that she only ever received the Carer Allowance of $123.50 per fortnight). But it still raised the question for me – what if my partner was instead a distant relative? Or a neighbour? Someone who could not possibly be assessed as ‘combined’ with me… when my partner’s payment was significantly impacted from our combined income calculation, I started to realise there are probably many people that figured this out before applying for their ‘completely un-related disabled person of interest’.

The reason my partner’s payment was significantly impacted was because, although I was not working at the time, my employers were in the process of negotiating my ‘salary continuance’ payments through an insurance scheme they had in place for instances exactly like mine. This meant that I would still receive a monthly salary at a discounted rate (as is common with most salary continuance schemes). So instead of being assessed as an individual earning $0 each fortnight, my partner was assessed as a member of a couple earning $1,011 each fortnight, which was very close to the cut-off rate of $1,198.20.

To make matters worse, an outstanding admin issue with the IRD in New Zealand was picked up by the ATO, which in turn caused my partner’s payments to reduce even further. This was despite the fact that we explained, with all documentation necessary, that there was no outstanding debt existing in New Zealand and it was a mistake that we were in the process of clearing up with the IRD which had nothing to do with the ATO. Unfortunately, when dealing with two different government tax collection departments, you quickly discover that no communication exists across borders and all your correspondence gets lost amongst god-knows-what sub-departments.

Our journey through the red-taped abyss of Centrelink’s system was an exhausting process considering it takes several days or even weeks to get responses for the forms you submit. My DSP application was (expectedly) rejected. I then was advised to apply for Sickness Allowance which was also (expectedly) rejected. I then inquired about the Medicare ‘Safety-net’ which was also not applicable (as a lot of the expenses I had accrued existed due to emergency dental work that had to be performed before I could start radiotherapy, which is not covered). I then had to endure several consultations with doctors and nurses to assess whether I was actually disabled/ in need of care. Then we were called in for a ‘random review’ process straight after our carer payment came through, which seemed awfully suspicious despite the auditor’s reassurance that it was completely random (albeit “extremely unusual” for us to be considered for review purposes so early on).

In the end, not only were the payments we would receive from Centrelink not going to be enough to keep us afloat, we started receiving weekly invoices for foreign debt that didn’t exist. So began the tireless efforts of responding over and over to different heads of different departments with letters explaining why we should not be receiving these invoices, which were then followed with harassing phone calls. To this day we are still in the process of trying to clear this mess up.

I expected the staff to be equipped with some level of apathy with their customers, as their job is based solely on box-ticking (I can’t blame them for this, I certainly would not be able to turn away a scared and confused cancer patient, so they must need to protect themselves from being too invested in peoples’ stories) but the process was getting beyond ridiculous.

After all the months of filling out forms, waiting for responses, having to pay for multiple appointments with my GP just to fill out more forms (or forms she had already filled out that needed to be completed again as they don’t accept photocopies), and rejection after rejection, I marched in one day and pointed out how much time and money I seemed to be wasting on this endless process. I was upset and tired of having 2-3 hours of my day chewed up every time I had to visit the centre again or be held on the phone for an hour to speak with a consultant that would never give me a straight answer. I gathered three of the consultants I had dealt with in the past and brought them together – I was convinced that I could not be the first person with cancer to walk through their doors asking for help, so there had to be SOMETHING they could do. I spoke as bluntly as I could to them – “I do not earn enough to support my family and continue to pay for the medical treatment I need. I need financial assistance now as choosing between the two is not really an ultimatum. I cannot be the first person to point out how flawed this system is. There must be some form of assistance you can provide to someone in my circumstance… What can I do to get help from you?”.

After months of frustration building up to this point, try to imagine the feeling of disappointment you get when you hear the response of “there’s nothing we can do to help you.”

On reflection, there are things I could have done differently:

  1. March straight into Centrelink the day I found out I had cancer in order to start claiming ASAP and avoid losing money to the ‘no back-payment’ carer policies
  2. Ask my surgeon whether “24-7” care was really necessary and force my partner to take up a part-time job if no work was coming through (which was completely unfeasible as my condition worsened)
  3. Ensured I spoke with two consultants at the same time during the first visit – although I endeavoured to speak with the same consultant each visit, she went on leave and I was forced to go through the whole process again with another consultant who gave completely different responses to my queries, which demonstrated to me that there was a serious lack of understanding about Centrelink’s policies among the staff there
  4. Fill out each form provided under the assumption that I am describing myself in my worst possible condition or the condition I expected to be in once I got further into treatment, not the condition I was in at the time
  5. Visited a bulk-billing GP each time I needed a form filled out to save on the consultations I did need to pay for

Truthfully, the last option was viable, but my GP had on record absolutely everything relating to my medical health from the day I was born, and she is a genuinely lovely person who was more interested in my mental wellbeing than charging my every time I visited her, so I chose to see her for all GP-related matters.

Although this entire ordeal felt like a never-ending nightmare and I was convinced at times that Centrelink’s policies exist to make it as difficult as possible to receive support, remember that the staff have their hands tied despite their own genuine desire to help. I knew they felt just as frustrated as me and in their defence they were going through several transitionary issues thanks to the government’s shake-up occurring at the time. This meant that staff were feeling insecure in their jobs and were constantly being moved around to different locations, making it very difficult to deliver much of a customer-service experience.

My advice to anyone that needs to deal with the Department of Human Services due to an illness would be;

  1. Ensure you keep record of absolutely everything. The dates you spoke to consultants, what their name was, how long you waited in line or were put on hold, how long the consultation itself was, the outcome of the conversation you had and ESPECIALLY what was agreed in the end (i.e. relay back to the consultant what you have understood and ensure you are both on the same page. Any discrepancies, no matter how small, need to be resolved before you end that conversation). Feel free to use the template I’ve provided to keep you on track of each meeting/ conversation.
  2. Visit your local Centrelink office in person for your first consultation as opposed to calling their hotline. This gives you an opportunity to put a face to their name, for them to get to know you more personally, and to ensure when difficult questions that need to be resolved pop up that they cannot dismiss it or tell you that they will call you back with a response.
  3. Peruse the Department of Human Services website BEFORE you visit them in person and read through the questions that are contained in the forms. This is something I definitely wish I had done prior so that any questions I had concerning what I needed to include in the form could be answered straight away as opposed to calling the hotline later once I’d read through them all. You can easily access these forms online by searching for them on the Department of Human Services website. I have listed of all the forms and information sheets that were relevant for my circumstance at the bottom of this page.
  4. Do not be intimidated or feel pressured out the door if you are unsure about anything. The policies in place are complex and confusing by nature – you will be asked the same questions in many different types of forms and you will wonder why they need this information provided so many times. Do not assume that new staff members know the correct procedures as it is likely that they are confused too in some circumstances. Be sure to stand your ground and follow through with any queries you have (and remember to record everything!)
  5. Remember to have thick skin when it comes to discussing your condition. I certainly wasn’t expecting to be asked questions about my life-expectancy but it’s important to ensure you don’t take it personally and certainly do not let it linger in your mind. Your goal is to get better, so I highly recommend granting a loved one permission to discuss your circumstance with Centrelink on your behalf to avoid the stress of having to deal with them yourself (see Form AUS221).