Dealing With A Rare, Incurable Cancer – An Interview with Our Founder – Desiree

Read the interview below:

Con: Good morning, Adelaide. My name is Con, and I am a conversationalist. you’ve figured out by now that my drink of choice is my latte. We’re endorsed here in the Celebrity Studios at Clarence gardens, given, once again, that the weather doesn’t want to play friendly. This morning it’s – words are escaping me – which many of you who know me would think, well, that’s rather incredible. It’s an absolute pleasure and an honor to have this lady this morning. I’m going to let Desiree tell her story, but just for way of a very, very brief intro, I just want you to picture that you’re 38 years in the prime of your business and life, and you are dealt with what is potentially the cruelest blow that you could ever which, which changes the complete tragic trajectory of your life. Good morning, Desiree, how are you this morning?

Desiree: I am great, thank you.

Con: As I said, it’s an absolute pleasure to have you on our little program this morning. Thank you, Desiree, I’ve read your bio, and I’ve had a look on your website, and I’ve got a bit of background, but I’d like you to share with your views with our viewers. you’re 38 years old, you’ve got a financial planning business, which is going pretty well, you’re featuring on major news programs for expert opinions and advice. You’re writing in a major Sydney newspaper.

Desiree: Yeah. everything was exactly that. I honestly thought I was at the peak of my life, and everything I wanted and I’d strived for had happened. One night I happened to be doing my normal thing, which was making sure I had some workload finished for a client coming in the next day and putting the kids to bed. I sat down, sat typing away, and had a couple of glasses of red because I’m always way more imaginative on a couple of glasses of red. Before the night was through, I thought, oh my goodness, I haven’t actually eaten. I still had the proofreading to do. I went and grabbed some pistachio nuts and anyone who eats pistachio nuts has to know you put them in your mouth, you suck the salt off, and then you crack them open. It’s the only way you can eat them. There is a reason I’m telling you this.

The next morning I got up for my normal 6:00 AM five-kilometre run. Because, as I said, I was absolutely at the peak of health, and I got into work. My mouth had been really, really sore during the run and I kind of had a feel around in there, and then there was the lump. as I got in, I said to my office manager, “Is there like a lump or an ulcer up in the top of my palette?” She said, “yeah, there is. It’s quite round. It’s about two centimetres round. There are red dots in it.” And I was like, oh, okay. Well, there you go. That answers that question.

It was incredibly sore. We happen to live above some doctors. The next day it was still a little bit sore, but not as bad as the first day. I went down to the doctor’s and thought, maybe I should get someone else to look at this. Anyway, unfortunately, for that initial appointment, it was diagnosed as a puffier ulcer. For anyone in the medical profession who noticed that I’ve said that incorrectly, I’m sorry. They sent me on my way, said it was also stress-related. They said that they can last up to eight weeks, and you’ll be all good.

I thought to myself, well, I’m a single mum with three kids. I run my own practice – a very large financial planning practice. I’m starting up a second business. Yeah, I’ve been a little bit stressed. That’s probably right. About three, four days later, it wasn’t hurting anymore, but it was just there. Fast forward, eight weeks up, and it’s still there. I went back to the same doctor and said, hey, it’s still there. What should we do about it? He said, look, it’s not an exact science. Eight weeks is not exact. I said, yeah, come on. I’m kind of not happy with that. He appeased me by giving me some blood tests. Now, the blood test came back all clear. He was going to send me on my way again, for which I say – yeah, still not very happy with that.

So, how about we go see someone who could give us some second opinion? So, he sent me along to an oral surgeon, fast-forward waiting periods and everything else to get into the oral surgeon part. An oral surgeon has looked at it and said, you know what? It’s probably an infected saliva plant. How about we do a biopsy and, if it’s anything you’ve seen us do, we can take it out, and off you go. Well, actually it was arranged. Fast forward, finished biopsy, went home, got a phone call from the doctors two days later – we need to come you to come in quite urgently. I went, okay, it’s probably my mouth cancer.

I’ll get a bit of radiation, have a bit of chemo. I might get some time off work, which will be amazing. Oh, wait it back. I’ll get to work at everything we find. I walked in there knowing that would be cancer. As I walked down the hole, I noticed that the doctor had had a haircut. Strange things that I can tell you is, I thought, Oh, he wouldn’t go get a haircut to give someone bad news. That’s like just bad form. I don’t know why I thought that. But anyway, go into his room. He’s very, very nice and loving and very not clinical, and I thought, oh, this is not good. He came back in the room and said, I’m just waiting for a report to come back. Then he sat down and he said, well, you know that we played the up box.

He has to get such a cancer. What do we do now? Where’s the treatment? What’s the plan? And he said, it’s not as easy as that. Again, fast forward, hallway pretests, and the very next day, I’m rushed in to see a maxillofacial surgeon. Sat across from him for which he then told me that the treatment was going to be that they would remove a third of my upper jaw and half my palette. I would at best look like I had had a stroke. At worst, I’ll be physically deformed. Again, I thought to myself, it’s cool. You know what? All my friends who know me will still know me as me. I’ll probably find it hard to make friends cause I’ll look physically deformed. But you know what?

That’s okay. I’ll get through it. he got to the end of his blob. By then, I was having my own conversation in my own head about how I was going to get through it, and he turned around to me and said, well, if there’s nothing more, we’ll see you after Christmas. I said, no, no, no. There is one more question. He said, what’s that? I said, so I’m going to have all this done. I’ve got to have some radiation, I said, and then it’ll be fixed right. He said, no, you need to understand that your cancer is very rare. It only affects 80 people a year in Australia, and all we will have done is fixed you for now and given you some longevity.

I was absolutely blown away, as you can imagine, because I had already worked out in my head how I was going to fix it, how I was going to base it, and to then be told that there is no cure. It’s a rare cancer, so they are just really treating you to give you longevity. It just absolutely blew me away because that was not in my plan anywhere.

Con: Wow, yeah, that is unbelievable. I guess the first question that comes to mind, I mean, it’s interesting how you had this thought process going on where you had already told yourself what it was, how you were going to get around it, and you had it all mapped out and everything was going to be fine. So, when he told you that the prognosis was essentially not – how did you respond? Do you recall what your reaction to that was at that time?

Desiree: Yeah, I remember thinking, no, he’s wrong. Of course. I went home and did a lot of research myself – well, what little research there was for my particular cancer – and realized that he was probably right. I suppose the only time I really got angry about it was not for myself, but the fact that I was a single mum and my youngest was eight and whatever you believe in, the universe, God, whatever, whoever had done this, how dare they do that to my eight-year-old, how dare he not have a mum to grow up with? And that’s probably the only time I’ve been angry about that. I did make a very, very committed promise to myself that no matter what, I wouldn’t become angry about it, and that I would continue to do what I did, which was to find the purpose for why I got this – which sounds a bit weird.

Con: Well, it doesn’t sound weird at all. Look, I wrote an article not long ago on my blog which was born out of a comedian many, many years ago, and it was about “Never Challenge Worse.” People sometimes go – and it’s a common phrase – my God, things can’t be any worse. It just can’t get worse. But there’s always a level of worse. There’s always a level of worse

Desiree: And a rare cancer is, I thought, the worst. Subsequently, I’ve had 56 operations in the last 10 years. Plus, you know, many hyperbaric treatments and radiation-based treatments. You’re exactly right. Don’t ever say that it can’t get any worse, because it probably will.

Con: So, just tell me again, with regards to your rare cancer, and you’ve mentioned that only 80 people in Australia are diagnosed with that particular cancer – from what you’ve said, there’s no known cure as such – is there an – and I’m not trying to cast aspersions on the medical profession here – my question is, was there any suggestion or did it go through your mind that had they diagnosed this sooner and you hadn’t been sent off for eight weeks – because you waited for another few weeks and you didn’t push the issue – that it was potentially likely that the outcome may have been different, had it been diagnosed earlier.

Desiree: In my particular cancer – if anyone ever wants to do a bit of research on my cancer, it is called adenoid cystic carcinoma. So, basically, it causes trouble for the nervous system and comes out through any gland that excretes substances. In my case, it basically works in a situation where it’s very slow-growing. A lot of people would be living with it for years and won’t know that they have it. However, I can tell you names of organizations now, which have organized for people with my rare cancer to have a community to talk to each other. I’ve found that a number of them go misdiagnosed for years, and I mean, 10 years in one poor person’s case. She literally lost her whole – I stopped it. I will. Yeah. She was continuously told that it’s just a problem. Don’t fuss about it. So, it seems to be a very common threat that happens with rare cancers where people are misdiagnosed for a very long period of time.
The question has to be, in my case, I was potentially very lucky because I was the one who pushed and pushed and pushed to actually get someone to do something. I literally could have been misdiagnosed just like her for a number of years. I think, in my case, I was actually lucky because I pushed so fast that I haven’t had any recurrences – and I’m one of the very minor number of people who haven’t, because by now most of them have.

Con: Can you tell us what is your situation currently? Are you in remission or is it still there and because it’s slow-growing, it’s just prolonging. Where are you from a medical perspective at the moment?

Desiree: We don’t go into remission. Ironically, people who have rare cancers will generally refer to themselves as warriors because they fight this every day, rather than being survivors. We refer to ourselves as rare cancer warriors as a general. We get a no-findings presence. An NFD on our system. That’s kind of good cause it means that there’s nothing obvious, there are no tumors growing. But it also means that we don’t actually have the technology to find the cancer. So, in my case, as an example, my blood tests will still come back as perfect. I recently had an MRI. A lot of people don’t know that not all cancers show up in blood work. Mine doesn’t; I’ve just recently had an MRI. At the moment, there are no tumors present there. Because it goes through the nervous system, we just don’t have the technology to actually find it.

So, I have no findings present at the moment, and that’s it. No funniest presence. That’s how we refer to it. Yeah.

Con: Wow. Your situation is – is it safe to describe it as – as good as you could hope for, given the circumstances.

Desiree: Absolutely, absolutely. There are a lot of people who have not got 10 years like myself. There are other slight differences; it’s unlike normal cancers, where you’d normally get to five years, and you’re like, oh, that’s it. I’m done. No. In our case, you actually have a 90% chance of getting to five years with no reoccurrences. It is after the five years that the stats get worse, you know. As I’ve probably been through more surgeries and treatments than most people, and because I’ve had a lot of after-effects from the treatments, there are secondary issues. I have had osteonecrosis of the jaw from the radiation because of the treatment that was given to me. Compared to most people, I am actually really, really lucky.

Con: Certainly, I would suggest that – your perspective on this – because from the first time that we spoke – I thought, how is this woman so happy, given her circumstances? And it’s fair to say that our attitude to situations plays a fairly significant part in our overall health. How we do with things, and indeed the outcomes that I want to touch on.

Desiree: One thing that many people may not consider when they will meet somebody that they know is dealing with cancer, in general, but more so with a rare cancer is the financial aspect. Certainly, we live in a country that’s got one of the best healthcare systems in the world – we have Medicare, this private health. Anyone who has been on private health, we certainly grizzled and grumbled about that gap. It seems to be quite significant. You know, you go to the doctor, you’ve paid all this money for many, many years and you’ve still got to pay this filthy gap.

Con: I was reading the information on your website. What blew me away was not only the fact that you’re $45,000 out of pocket, but you’re $45,000 out of pocket not only having had private health but having had income protection as well, and you are still $45,000 out of pocket. Can you briefly explain how that happens?

Desiree: Yeah, because I had income protection, one of the benefits of that is obviously that my income only dropped by 75% but then I have to still pay tax on top of that. I had my private health insurance as well, and as you know, there’s always a gap there anyway, but what happens is just because you actually don’t qualify for a health care card because you have income protection, you still pay the full dollar for everything. On top of that, a lot of rare cancer treatments and medication are not on PBS for our rare cancer. That sounds weird, I know, but I’ll use the example that, in a lot of occasions, our particular cancer will end up in the lungs. That’s the good given 80, 90% of us; that’s how it gets us. There’s actually medication available for lung cancer, and PBS actually subsidizes that. But for my cancer, because there’s not enough research, given that there are so few people who have actually been diagnosed with it, that same medication would actually cost us full cross. Even though it’s trading the same thing, but there’s no research based to say that our cancer would benefit from that medication because there are so few of us to do the research on. So, for one group of cancer patients, it’s subsidized, and for your group, it’s not. We’ve got the same drug that is basically two sets of rules. Yeah.

Con: Just frightened me and frightened our viewers, what sort of cost is attached to this medication per treatment?

Desiree: Look, I mean obviously I’m not a pharmacist, but a lot of those drugs can be thousands of dollars, and they would cost that same person on a healthcare card, $685 or whatever it is at the moment that they get that medication for. For myself, we’re talking about $620 compared to potentially and literally thousands of dollars. The same drug. Yeah.

Con: The only reason is because there are not enough of you to do the testing to suggest that it has a specific benefits, is that correct? Am I getting that right?

Desiree: Yeah, that’s correct. There’s also a government scheme whereby if there’s not adequate treatment here, you can apply for Medicare and a special scheme to actually seek that treatment overseas. But it has to be consistent that that treatment actually has a good chance of curing you or treating the cancer. We will struggle to get that because we are still incurable. A lot of that treatment may give us longevity or further longevity, but it doesn’t actually cure us. We actually will struggle to get the government to subsidize us going overseas to seek treatment.

Con: As you said, there are approximately 80 people diagnosed within Australia over a year?

Desiree: Yeah, and I would shatter to think, and you may or may not know how many other rare cancers there are that would be in the same boat and the sufferings of the people with this affliction who are ultimately financially ruined. Ridiculous pricing for medication that is PBS for others.

Con: Do you know how many other rare cancers there are?

Desiree: Yeah, we say rare cancer or less common cancer because within a cancer group, breast cancer, which we all know about, if you use that as an example, then a male breast cancer is actually a rare form of breast cancer. Rare or less common cancers make up two in every five cancers that are diagnosed. As far as actual rare cancer is concerned, there is a list that’s available currently that’s got over 400 rare cancers on it that have been named, but you also need to know that then within that, there are further cancers within those subjects.
Like, even with my cancer, think about it, it can affect any part of the cube of the body that excretes. That’s – from memory – about 60 different areas within the body, and then those areas. It’s more common for it to be in the mouth like mine was, but it literally can be in the breast, but it’s not breast cancer. It’s these topics. It’s part of that confusion, but because we’re such a small group – and I don’t know how to explain this, anyway – then just be cold about it. The day that you realize is after you’ve been diagnosed with rare cancer, that you kind of get to accepting that. We all understand that there’s going to be more treatment for more common cancers.

So, as an example, the first year after diagnosis, I raised $70,000 for the Cancer Council. I did that with the hope that they would put that towards a support group for rare cancers. When I spoke to them about how they plan to use that money, they said, “you need to understand that that $70,000 can help so many more people than it can the few that would need our support for the rare cancers.” Now, that’s that. I know that sounds so cold, but it’s true. What you learn as a part of your rare cancer is that you learn to say to people, “you know what? We just hope that something is found in breast cancer or found in prostate cancers so that that then can be used for us.” Some sort of connection, some sort of links. Eventually, most of us get to that stage, so that we understand it. I mean, it’s sad, but it’s true. Better to help 10,000 people a year than one. Sure. Yeah.

Con: Certainly, the older we get, there’s a much, much higher probability that we are touched by cancer. Whether it be a family friend, loved one or whatever. Everybody knows somebody, and certainly, we’ve had our share within our family, and none of the two outcomes of my parents were good, but they were up old. And that’s not what I’m here to discuss. I guess the other thing that’s really, really important is that your story is just mind-blowing. If this doesn’t put some of our viewers lives in context and perspective, then I don’t know what will. But more importantly to raise awareness of rare cancers. Secondly, we need to be aware of the enormous financial hardship that generates even for somebody who was as prepared and in a, let’s say, positive financial position that you were, but also to raise awareness of your charity and your organization. Can you tell us a little bit about that please?

Desiree: Yeah. Go back to what I said about raising the money for the Cancer Council. The biggest thing that I found is that everything you know or think about cancer is completely different when it’s rare cancer. My cancer, as I said, travelled to the nervous system. When I rang the Cancer Council to be put into a support group, they rightfully put me in a support group for people with rare cancer, with cancers in the head and neck. But of course, all their treatment options were completely different from mine. All their survival levels were completely different from mine or their everything was completely different. I didn’t fit. If anything, I lost more hope because I knew I didn’t fit. After this all happened, I reached out through Facebook and Yahoo and I found other people with my rare cancer in other countries. That was great.

At last, I started finding a group and then I thought to myself, well, why don’t we have that in Australia? Well, it’s only going to help 80 people a year, and there’s usually only about 1,200 of us leaving with it at any one time. Therefore, how many people can we really help? While having something like that. I thought, well, hang on. Why stats? All the rare cancers in Australia would be going through similar things to us. Why not start something up whereby when someone gets diagnosed with a rare cancer, they can, at the very least, be put in contact with someone else who’s been diagnosed with rare cancer. And if we’re lucky and we build that community large enough, then maybe they even might find someone with their own rare cancer.

So, yes. I decided that if this wasn’t my purpose in life, then nothing would be. I reached out to a whole bunch of people that I’d known in my industry. They were devastated when they found out that I was diagnosed with cancer. What I normally do is, I threatened them, and I looked at the sympathy. I told them that I knew the sympathy would work. I said, I’ve got cancer and I really need you to help me start this charity and you know, it needs to be my legacy, and I might not be here to see it through. And if they cried, then I say, “excellent, you’ll be on the board.” If they didn’t cry, I threatened to haunt them after I died, so they came on board.

So, we started a charity, that is called “Without a Ribbon,” and the reason it’s called Without a Ribbon is because it’s where cancers that don’t get the diagnose or don’t get the awareness of a ribbon – like pink ribbon and blue ribbon – and we know what all those are. We have started a charity called Without a Ribbon, which is for anyone who’s diagnosed with a rare cancer. The point to the charity is that we are not large enough to get funding from governments. We’re not large enough to be sexy enough for corporate sponsorship.

We really just deal with – we raise our money through sponsorship and donations from the mum and dads of this world. And with that money, we use that to build a community so that when someone gets diagnosed with rare cancer, they become a part of our community. As I said, we can put them in contact with someone, with any person we pick, and hopefully, we pick someone with their own rare cancer. We also provide them with a portal that actually has a lot of information about their own cancer.

So, the problem with rare cancer is that there is so much information that’s incorrect, that is only relevant to different countries, all of those things. We try to build them a little portal that’s all about their cancer and options that would be available for treatment or doctors who might be dealing with it, others, charities that might be up to help them out financially, government organizations. So, they actually feel like someone cares and that someone’s there to support them.

Because the biggest thing that gets lost when you get diagnosed with rare cancer is the hope that everyone else gets when they have a more common cancer and their final rate. We use the money to subsidize them getting together once a year, and we have a Warriors United conference and we have it in different States. And we subsidize wherever we can, the way we can for them based on how much money we raised the previous year. The only way I can explain this to people is – imagine being told somewhere in the world, you have an identical, oh, in Australia, you have an identical twin. That’s all you know.

So, you don’t know their name, you don’t know anything. Then suddenly you find the stepbrother and stepsister of that twin, you know, at a meeting one day. Then a year later, the twin turns up at that meeting. That’s the only way I can explain emotionally what it’s like to meet someone who’s also going through a rare cancer journey, and then to meet someone who’s going through your rare cancer journey. That’s what we do. We bring them together and we give them a community that they wouldn’t otherwise have.

Con: Desiree, as we get close to winding this up, I know your wish list would be very, very long and understandably so, if there was one thing that you would really – if you were to achieve this whilst you’re still with us in our home – what is the one thing that you really wish you could achieve?

Desiree: That the community gives the same level of support to people with rare cancers as they do to people with more common cancers.

Con: Wow. That’s right. It’s been an absolute pleasure. I really commend you for the work that you do, and obviously trying to raise awareness for the people that do suffer from rare cancers. As you said, it’s definitely a different plan for you from your normal or run of the mill cancers, let’s say, to the rare ones that, unfortunately, you’ve come into contact with. We’ll have all the details of your website on all our social media links and posts. If there’s anybody out there that is in a position to help Desiree and Without a Ribbon organization, any corporates, anyone out there.

Unfortunately, the timing, given COVID-19, isn’t helpful. However, things like that aren’t always helpful. If there’s somebody out there that wants to get in touch with Desiree or wants more information, and if there’s somebody out there that unfortunately does have a loved one or is looking for some support around rare cancer, please get in touch with Desiree.

Again, Desiree, I wish you all the best, and we certainly will have another chat in the very near future. As I said, if you can support this charity, please do. It’s definitely very unique, and it creates an enormous benefit to the community of these people. Thank you very much. My name is Con. I am a conversationalist. Stay safe, stay positive, and most importantly, stay connected. Bye for now.