Travelling Down the Road

Since my last blog post, I went on a road trip (Melbourne – Cobram – Forbes – Mudgee – Tamworth – Coffs Harbour – Gold Coast), had Christmas and New Year in Queensland and then returned (Gold Coast – Yamba – Port Macquarie – Newcastle – Wollongong – Albury – Melbourne). It was really relaxing and fun to be out on the road with a different destination each day.

On my return, I was able to see the Oncologist at Peter Mac who had originally found my cancer had spread. After discussing my next set of options, we decided to have my ovaries and fallopian tubes removed, along with the unknown mass (sitting on my right ovary) – which would allow us to test it and tailor treatment accordingly. I had keyhole surgery at the Women’s Hospital on 25 January 2017 which went very well and the unknown mass turned out to be a benign cyst.

With no cancer in my ovaries, fallopian tubes or uterus, there was no tissue for them to collect which ruled me out of clinical trials, instead I am now on standard hormone therapy (Tamoxifen tablet, daily) and continuing bone density injections (Denosumab, monthly).

Sounds nice and simple? Here’s the strange part – my recent PET and CT scans show my T12 is playing hide and seek (he’s not showing up on my scan), but the lymph nodes on my chest are (and they are symmetrical). So to work out what is going on there, I have had a bronchoscopy to get a sample of tissue. So far it looks like it isn’t cancer, but not sure what it may be.

Last but not least, a routine blood test has shown that I have an underachieve thyroid. Which means more medication (Thyroxine Sodium tablet, daily) and monitoring.

It’s been a busy start to the year. I’m looking forward to it settling down and for my life to take on a more structured routine.

Trials and Tribulations

How does one get kicked off a clinical trial? Apparently, you take one tumour that is 13mm diameter in size and over the period of 8 months you measure it every 8 weeks via a CT scan. That one little tumour grew to 16mm, then 17mm, then shrunk back to 16mm and now it’s 19mm. The difference between 13mm and 19mm is over 30% and that is all it takes to keep me from continuing on the trial.

My health is fine… the many side effects, I have managed well. I have continued to work 2 days a week. I see the psychologist, the physio and the exercise physiologist, every few weeks. Most days, I knit or learn to spin my own yarn. I try to walk every day or get on the exercise bike. I drink smoothies and turmeric lattes to boost my immune system. I’m doing a lot of the right things.

I do get tired… I do get moody… I do stress when I should relax. Each day is a work in progress, but I try to do something nourishing for myself.

Coming off the clinical trial has been a shock, but it doesn’t define who I am or where my health is currently. It just means that I can’t continue to take extra medication (or possibly a placebo). I will continue on the “standard treatment” of Letrozole (hormone inhibitor tablet, daily), Goserelin (hormone inhibitor injection, monthly) and Denosumab (bone strengthener injection, monthly).

In the new year, I will have a new oncologist and a new routine – visits to the hospital every 6 weeks and CT scans every 12 weeks. It will be nice to have less tests and a bit more freedom. I’m not sure what the next step in my treatment should be, but will consider all options (including swapping hospitals). Whatever happens, I have to learn not to get too comfortable with it…

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Time for Tea

What is it that makes tea so comforting and warm, like a big cuddle? Coffee can taste good and give you bursts of energy, but tea hits the spot with that “ahhhhh” sound. It can be relaxing and refreshing. It can give you 5 minutes away from your desk (or even at your desk) that clears your head and soothes your soul.

I drink tea all day long. I have a black tea after breakfast. Another mid-morning. Another after lunch. Then for my afternoon break, I swap to green tea (one cup a day is meant to have multiple health benefits). Then after dinner, I’ll have a flavoured tea (with black or green base). I love liquorice, ginger, chai, cinnamon. Anything warm and spicy.

How much of the fondness we have for tea is in the dried leaves and how much is in the ritual of it? Measuring the leaves (or grabbing a tea bag), waiting for the kettle to boil, pouring the water and then having to wait for it to brew and to cool down to drink. And we can only ever sip it.

In a world where everything is so fast, this tea making ritual is the 5 minutes that slows us down and makes us contemplate the world through a steamy lens. All the more reason to get that good teapot out and fill it up!

PS. I might just have to crochet a tea cosy. It could save me pouring so much cold tea down the sink!

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The Common Cold

You can determine when a common cold has got to you by the amount of knitting you are able to do.

The more knitting done shows the better you feel. Less knitting indicates low energy. Knitting with lots of mistakes indicates it’s time to take a nap and sleep it off.

Undoing your knitting for the fifth time indicates a state of delirium and you should not be making knitting decisions during this time.

So instead, I’ll watch some reality TV and drink endless cups of tea. If I’m lucky, I’ll fall asleep and dream that I’m knitting…

Stable

Stable is such an ordinary word and maybe that’s part of its beauty. My Oncologist has said that my tumours are “stable”.

I’m now 5 months deep into the trial. I’ve gotten the hang of my side effects – hot flushes, mood swings, slight fatigue, sore joints and feeling out of breath. Phew! It was very hard at the start not knowing what would come and how my body would react. Every pinch and pull becomes a potential side effect that gets recorded for future discussions with my Trial Co-ordinator and Oncologist.

I’ve also continued to see a Psychologist and a Physiologist (Lymphoedema Specialist). And added an Exercise Physiologist – to tailor an exercise programme to my specific needs. This has me walking every day and doing some resistance exercises (except for those freezing cold days when I refuse to leave the house).

I’m also now working 2-3 short days (4 hours) at the Wool Baa. It’s great to be back in “knitting land” and to be active on my feet and serving customers. This helps me remember that I’m a person first and a patient second.

Here’s to many more months of stability!!!

(Photo of interior of new Peter MacCullum Centre)

Clinical trial begins

Since the last post about my health, I’ve had a bit going on… mainly tests to see if I’m eligible for a clinical trial.

During the appointment with my Medical Oncologist at Peter Mac, where I was diagnosed with “secondary breast cancer”, it was mentioned that there was a trial taking place at the Austin Hospital and my oncologist thought I should go talk with them to see if it was something I’d like to join.

So that gave me a choice – stay at Peter Mac with the team that I was just starting to feel comfortable with or try my luck at the Austin Hospital.

The paperwork for the clinical trial was 25 pages of tests and side effects. My partner and I asked a few medical friends to look over it and point out anything we may overlook. This was a two week process of reading, researching and asking questions.

After meeting with the Clinical Trial Coordinator and the Medical Oncologist at the Austin, I decided to at least go through the screening process and see if I was eligible. How would I know if it was an option and how could I decide, if I didn’t have all the information?

The screening process took another 2 weeks. CT scan, bone scan, bone density scan, blood test, urine test, ECG and echocardiogram. This was a few hospital visits, but also just a tough time mentally. Feeling like I wasn’t yet a patient at the Austin and I was no longer a patient at Peter Mac. I was also no longer a person with curable cancer. Where did I belong in all of this? Where was I?

I did manage to find a physiotherapist (private) to help with my arm movement and cording from the lymph node removal. Yep, I still had issues from my surgery to deal with. I also started to see a psychologist (through Peter Mac). These two people kept me in check and helped me to deal with the physical and the emotional repercussions of cancer. They helped me to cope with this strange life transition that I was experiencing.

I also had some family visits (including my partner’s family) during this time and that was a great distraction and a great support. It helps put everything into perspective when you get to share such special moments with loved ones.

By now, I had decided that if I was eligible for the clinical trial, then I would participate. I’d already gone through the many tests, so it would get a little easier from this point. And so I was accepted and I began the trial on Tuesday 5 April.

Now I have an injection every 28 days (goserelin) and take some tablets daily (letrozole + trial drug). I visit the Austin Hospital every two weeks for progress tests. The medication is cutting off the oestrogen hormone in my body and so I will go through early menopause. I may also be receiving the trial drug which will hopefully stop the cancer from growing. Otherwise, I may be receiving a placebo drug which does nothing. Either way, my cancer’s growth should slow as it’s not getting the hormones that feed it.

It’s early days and apart from some mood swings, I’m feeling pretty good. I am starting to look ahead more than a day or a week. All in all, I’m feeling more positive and more like myself, not that I ever stopped, but I do think there has been a shift. Here’s to beautiful beginnings…

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Update to NiB Post

Since the last post, written by my partner Jen, we were approached to start a petition. This petition has given us a platform to tell our story and given people a chance to support us in a call for NiB to change their basic hospital policy. We have now reached over 4,000 signatures!

From this, my partner was approached by NiB’s customer resolutions team, as well as one of their senior group executives to discuss our concerns. Choice magazine issued a report which confirmed that NiB’s Basic Cover is a “junk” policy. This week, our story was also shared on The New Daily news website.

All of our concerns have now been put into a seven page letter to the federal Health Minister, the Hon. Sussan Ley and it will be interesting to see whether her office provides us with a response. Our story is particularly timely because the Department of Health has been investigating issues surrounding health insurance since last October.

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Why NiB’s Private Health Cover has to change

This is a guest post written by my partner, Jen Tsen.


On 25 January, I found out that my fiancé had breast cancer. There are all kinds of heartbreak a person experiences when they find out someone close to them has this disease. This goes double-fold when it is the person you love most in the world.

There are some ways that we have been blessed. Throughout the last two months we have had family and friends who have reached out to us; to comfort and reassure us. This was not the case with our Australian health insurer NiB.

At a time we needed health insurance the most, NiB not only refused to provide us coverage, but refused to provide financial options and even straightforward advice. In the few awkward instances NiB representatives made contact, they made things worse. NiB have made my fiancé’s cancer journey more difficult, and more dangerous.

The NiB cancer rollercoaster

So to start with, we signed up with NiB on 25 October 2014 under their Basic Hospital and Core and Wellbeing plan, paying over $2,600 per annum. At the time we joined, the NiB insurance advisor told us we would get hospital cover, but did not tell us that we would not be insured for any type of cancer.NiB also did not explain that our ‘Basic Hospital’ coverage did not include any treatment related to cancer surgery, including surgery that the public health system describes as urgent (Category 1).

The language in the contract (sent to me after we signed on) is a mess of confusion. While it lists what is covered and not covered, there is no place that specifically refers to cancer. When we called to ask NiB about hospital cover in January, we were told they could not cover us because this fell under ‘Other Services’. This was a blow. When else would we find out any service was not covered, except when we needed to ask because it was a treatment we would need?

Leading up to this point, our GP had recommended that my fiancé undertake tests at a well-known multidisciplinary breast clinic, and after diagnosis we decided that we would go with their private surgeon to get her into recovery as quickly as possible. The pathology had indicated that the cancer was fast growing and was on the point of tipping from early to secondary breast cancer. Our medical friends advised us that the biggest benefit of private insurance was at this exact point, to beat the waiting list and get the surgeon of our choice.

We understood that many of the long-term costs of treatment might not be covered by NiB, but we assumed that ‘basic hospital cover’ meant exactly that. We assumed that NiB would at least be able to compensate us for some of the surgery’s incidental costs, such as in relation to the use of the hospital theatre, or accommodation for the two nights, if not the surgeon’s bill.

Any assistance with these expenses would have helped us during this difficult period – we paid $7,131.20 for these three alone. However, not only was there no assistance from NiB, by increasing our cover to the ‘standard hospital’ plan NiB said we would have to wait another twelve months for future cancer cover to kick in. To top it off, NiB refused to even provide us a preconditions form to take to our doctors, and we were provided no incentive (like a shorter waiting period or a lower premium) to stay with them. We would have to pay all costs for 12 months before the extended cover could begin.

Why cancer surgery should be covered by all ‘Basic Hospital’ cover

So in my view there are a range of important reasons why NiB’s approach to cancer is wrong.

The first reason is obvious. The language in the contract itself is dishonest. Using a clause like ‘Other Services’ to hide the lack of cover for cancer is unethical. Expecting that customers will ask about specific treatments that may fall under ‘Other Services’ before they actually need them is unlikely to ever happen.

The second reason is that ‘Basic Hospital’ is surely meant to apply to hospital treatment that is urgent and necessary to save a person’s life. Is it sensible to make a difference between surgery to mend a broken arm or remove a tumor? My fiancé’s cancer surgery was a Category 1 in terms of urgency for elective surgery. ‘Elective’ does not mean that treatment is optional. Category 1 elective surgery actually means that if surgery is not done within four weeks, the medical condition will become an emergency.

The third reason is that the exclusion of some urgent hospital treatments and not others is arbitrary, confusing and different from other parts of the Australian health care system, such as the Medicare Safety Net Threshold where hospital and out-of-hospital services means exactly that. If you came from another insurance provider (like we did) you may not even expect that this difference in coverage might exist. In fact, other health insurers cover cancer surgery in their basic hospital plan, like the health insurer we are leaving NiB for.

Finally and most importantly, excluding specific references to cancer in the basic hospital cover indicates that NiB is denying the scope and incidence of this disease. Cancer Australia tell us that by the age of 85 years, 1 in 3 women will be diagnosed with cancer, and 1 in 2 men. Since the late 1980s the incidence of cancer has continued to climb. In 2015, 126,800 new cases of cancer were diagnosed in Australia.

We understand that NiB is more popular with younger Australians, and NiB’s marketing is intended to target us. But whatever your age, the reason anyone ultimately gets health insurance is for the insurer to come to our aid when something unpredictable happens. And with cancer, the chances of this happening, is unfortunately way too high.

A cancer diagnosis is not an add-on to the health risks everyday Australians face. How can our society recognise cancer as common, for instance, annually holding a national test cricket match to raise awareness about just one kind of cancer, or organise fun runs in every major city, but NiB is still able to leverage against other health insurers by not covering any component of the urgent surgery costs related to this endemic disease?

Who do you turn to when you find out your fiancé has cancer?

I’m sure it can’t be easy working for a health insurance company, especially when you have to be the bearer of bad news. But it is reasonable for members to be assured that NiB staff are well trained, and that when they need to get in contact about serious health issues, they can do so with sensitivity.

I’ve had three phone conversations with NiB. I had these conversations because I didn’t want to allow my fiancé to get upset. She wasn’t, but in the end I was. After the second conversation I was so angry and hurt that I cried.

The first call was when I asked about our plan and was told it did not cover hospital services relating to cancer surgery. NiB told me they would send me a precondition form. I was later advised by email that a supervisor decided not to send this. The second phone call informed me why I had not been sent a precondition form. During the call NiB declined to answer my questions around the contract and the representative actually told me we should go through the public system for cancer, like she had. On the third call NiB asked me why I had decided to leave. The person hadn’t read our file. The NiB representative wrongly informed me that my new provider would charge us an excess for every hospital trip we made. I also found out from my new provider afterwards that this person had cancelled our cover early, so that we would be left with over a month without any health plan. What if something happened to my fiancé or me during this time? We would have had to pay. This act also endangered our ability to get the same premium of health cover under our new provider. From NiB’s perspective, they would have profited a few hundred dollars because we had paid premium the year before.

A lot of the issues I am writing about are ones I wrote to NiB over a month ago. After the first phone call, I wrote back a long email asking to talk to an NiB representative about my concerns with the contract and NiB’s approach to cancer treatment. I have not heard from NiB on any of these matters by phone or email, and my only recourse is now to talk to Consumer Affairs.

On 1 March, after Amanda’s mastectomy and a positive recovery, I found out that her original prognosis had changed. They found a tiny metastised cancer in the T12 vertebrae of her spine. It is funny that such a small thing, a 9mm growth embedded in the middle of the bone, could mean so much, but it has turned our world upside down, for the second time. This was also exactly why the surgery she undertook was urgent.

I believe NiB should not be allowed to provide insurance that provides ‘Basic Hospital’ cover that excludes urgent cancer surgery. If I had a chance to talk to NiB’s spokesperson and brand ambassador, Paul ‘The Chief’ Harragon, I would ask him to end his association with NiB.

I know that my views come from a deeply personal place, but it is hard for me to see how he, as a State of Origin great and as a father and husband, could look at my experience and not think that things at NiB were fundamentally wrong. Especially as I know he is a champion for brain cancer treatment through the Mark Hughes Foundation.

It is a big call, but in so many ways, NiB has let us down. I just hope that this story is told so that others won’t be let down, too.

Jen Tsen.

Holding My Breath

Last week, it was confirmed that I have a small cancer in my T12 vertebrae.

This changes everything. My primary (or early) breast cancer is now classed as secondary (or advanced) and as such, it is no longer curable. Instead, the plan will be to slow down it’s growth and stop it from spreading.

These are just words and I don’t yet know what they will mean for my health – this year, next year or the ones after that. I have been told that instead of chemotherapy, the treatment is now hormonal therapy. This sounds much milder, but it may be ongoing. Until I start the treatment, the doctors can’t tell me what to expect from it. Everybody’s body is different.

For me the greatest challenge with this news is to accept that I no longer have any certainty of the future or of my health. I may not know how I will feel today, tomorrow or next week – emotionally or physically.

I will need support from my partner, my family and my friends. For someone who likes to do things for myself, this is really hard, but I am learning.

I know I will be in your thoughts and that lots of good vibes are coming my way. I might need to bottle them and save them up for another day.