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When it comes to friends and family supporting you during cancer, it’s a tricky balance to maintain: on one hand, you don’t want to Impose or come off like you can’t handle it, but then again you want to let them in and help because they want to be there for you, but they don’t know how. Today I’m talking to Rachael who went through cancer herself and created a solution a mobile app that can break those barriers and make it easy for people in your life to help out and for you to get the support you want, on your terms. Here are some things we cover today:
- How diagnosis turns your world upside down
- The hidden struggles of living through cancer
- The biggest challenge behind asking for help
- How CanDo helps you get the support you want
- and much, much more!
Garvan Institute of Medical Research
Episode 023: Getting The Support You Need, On Your Terms
Joe: Hey, Rachael, I love your app. I must admit, I was thinking about this before, a way of getting people to support you on your terms. I think this is so fantastic.
Rachael: Yes, thank you. It’s been a labour of love to get to this point. There are lots of plans for the future, as well, so it’s been a big deal, a lot of work.
Joe: Yes, I can only imagine. Yes, I was talking to Ben Smith from the University of New South Wales, that’s when he told me about it. I was like, wow, that’s exactly what we need.
Rachael: Yes, well, I’ve been lucky enough to get a lot of support from most of the big main cancer organisations. They all recognised the need for it. I think a lot of them just either don’t have the money to do it or it’s not their culture to get those things done. Yes, there are lots of plans for the future to make it bigger and better and all that kind of stuff, but it’s been great for me, as well.
Joe: Fantastic. Rachael, I want to take a moment to go back in time in a time-machine to a time before cancer. What was life like before? What was life like then?
Rachael: I had a pretty senior job in an advertising agency. I have a 25-year background in advertising. I had just taken on a pretty big job. Had a brand-new mortgage on my first apartment, single, living in Sydney and having a lot of fun. It was a Saturday morning when I accidentally found quite a large lump in my right breast. You instantly feel the other side because you want to feel if it’s symmetrical, because you think if it’s symmetrical, maybe it’s something that’s supposed to be there.
It was on the underside then I thought it might be something attached to my ribs. It wasn’t symmetrical, so I was pretty quick to go to my GP. Maybe two or three days later. She had a look at it and the first thing she said, I remember every word, she said, “I don’t like it.” Then went into a week of scans and ultrasounds and biopsies and things like that from that point on. Just trucking along in life and everything is normal and doing normal things, then all of a sudden, literally, your world turns upside down in an instant.
Joe: Yes, it’s crazy, isn’t it? I remember when I found out, those words are kind of etched into your mind. What was it like for you? What were your first thoughts when you got your diagnosis?
Rachael: Well, the diagnosis was kind of a staggered process. When I went to have my mammogram and ultrasound, and it was the week before Christmas, so I remember the doctor, she was great. She called around to try and find somewhere that could actually take me the week before Christmas, because they’re usually really busy in that time because they’re about to close down for the couple of weeks. The radiologist had stopped talking to me, or the radiographer had stopped talking to me.
My sister had cancer, so my sister had a rare form of sarcoma called: Synovial Sarcoma. I’ve had that experience with her going on for years. She had said to me, when they stop talking to you when you’re having your scans, she said that’s when you know it’s bad news. I was chatting along with this radiographer and then she stopped chatting and I just went, oh no.
I’d already twigged that something was going on because they’d done the mammogram twice. Of course, that’s code for, there’s something we want to have a better look at. At that point, she called the doctor into the room, he came in and he said, “I want you to sit up.” She sat me up and said, “Look, I think we’re looking at a breast cancer, but we need to do a biopsy to be sure.” My doctor had already had the foresight to book me in for a biopsy for the following day. That was already going to happen.
Once the biopsy came back, it was a couple of weeks, I had to wait over Christmas until I think it was the day they reopened after Christmas that they confirmed that the cells they had biopsied were a Carcinoma. My GP was the person who told me that. She cried, actually. She called me in and she opened the envelop and she started to cry. I think that’s because she knew my history, she knew my family history, she knew that my sister was very sick. I think she was just thinking, what more can people take?
Then, of course, I had surgery and it wasn’t until surgery that they were able to give me the exact diagnosis of what kind of tumour it was and what the implications were as far as lymph nodes were concerned and the stage and grade and all of that kinds of things. Which, unless you’ve been through cancer, those things are all gobble-dee-gook, really, you don’t really understand what those things mean.
Yes, from start to finish, I knew I had some kind of cancer, probably pretty quickly, and then it was another month before they understood what it was and how to treat it and what happens next kind of thing.
Joe: Yes, absolutely. You just made me realise that when I was doing my test, when I was doing my ultrasound initially, that the girl who was doing it, she stopped talking, as well. Yes, I remember it now. I thought it was a bit rude.
Rachael: Yes, it’s a common thing. My sister had mentioned it to me in relation to her cancer. Then just recently, I had my mammogram and ultrasound and they had to redo the mammogram and then they stopped talking to me during the ultrasound. What happened was, they’d found some – I’ve had reconstructive surgery fairly recently – so it was new scars that they were looking at. That’s what they were trying to figure out. They were trying to work around the new scaring. It’s a really disconcerting moment when you’ve had that happen to you in the past.
Joe: Absolutely. Rachael, on the practical side of things, there is a lot going on when you find out you have cancer, you’ve got your treatment to go through, you’ve got your everyday things, your job, all of that to worry about, how did that work out for you?
Rachael: Not easily. I was very lucky in that I had a boss at the time who was incredibly understanding, and he wanted to make things work. Which is really important. Obviously, there are some people who instantly think, well, how is this going to affect my business? That’s natural. I actually don’t judge those people too harshly because they have a business to run. They’ve got to try and understand the implications on that. I get that part of it. I was really lucky that my boss at the time who valued my contribution and wanted to keep me involved as much as I possibly could. Ultimately, what happened was, I was so sick with treatment and I suffered really bad side-effects, that I couldn’t really work at all for quite a long time. I tried to keep my hand in a little bit, but for me, it wasn’t really possible.
Whereas, I know other people who work part-time during treatment or sometimes they work full-time during treatment. For me, that wasn’t possible. They kept my job open for quite a while. They were filling in with consultants and freelancers. I wasn’t getting paid, so I didn’t have paid leave for most of that. I did have access to income insurance. Which is a whole other story because that sounds fantastic but that came with its own set of problems, because claiming against those insurance policies is really complicated.
A lot of the stuff that’s going on at the moment in front of the banking world commission actually relates back to income insurance claims and how they’ve got it so wrong in the past. I did have access to some money through those channels, but it’s a massive lifestyle change, and I want single, it was only my income paying for the mortgage. Some people are surprised when I told them that you still have to pay your mortgage when you’re sick.
They have this idea that the bank says, “You’ve got cancer, don’t worry about it for a year or something.” That doesn’t happen. You still have to pay the bills. It’s hard work, you know? Also, I think psychologically going from being – I was busy in meetings, meeting C-level people and big companies to talk about their business plans and things like that. Going from that to being at home sick most of the time. It’s a huge psychological shift that is quite a challenge to overcome.
Joe: Yes, absolutely, Rachael. What about your family and your friends? Did they support you in the way that you wanted to be supported?
Rachael: Well, I think they tried. I think that is really how can-do came about, really, is the learning from that particular of the experience. A lot of people tried to help me, a lot of people offered help, and I did the typical polite thing of saying, “No, I’m fine. I don’t need any help. I’m fine.” Also, having been used to be a very capable independent person, you don’t want to give that up. You don’t want to be perceived all of a sudden as being this helpless person. It’s the natural thing to say, “No, I’m fine.
I don’t need any help.” Then, of course, the other people would walk away saying, “Well, I know she can’t do everything by herself, but now I don’t know how to re-ask the question or what does she really need. Like, if I do this thing, is that the right thing to do or is it the wrong thing to do? I don’t know if that’s actually helpful or not helpful?” It’s nine years later and I still have people coming to me and saying, “I wish you had let me do more. I wish you would have given me something to do.” Thinking about all of that really was the catalyst of can-do. Also, at the time, I had a pretty unique situation, in that my sister was going through treatment at the same time.
My family had actually, my mum and dad, had moved back to Sydney with the idea that they were going to help her get through her latest rounds of treatment. She had a couple of young kids. She had a very different lifestyle to mine. She was living in the burbs, a couple of kids. Had a lot of support from her kids’ school and people like that. In my case, I didn’t have those networks that tend to happen once you have kids. My relationships weren’t based on taking the kids to swimming.
My relationships were based on: when are we going to have a cocktail? It’s a very different kind of environment. It’s a big leap also to go from that to can you change my sheets, or can you help me with my insurance paperwork, or can you organise a gardener to come over? These are really awkward conversations to have. Off the back of all of that, not really having the access to the kind of help I needed and not being able to ask for the help I needed. I really thought, well, there has to be a better way.
I was hearing a lot from people who had the same sorts of problems. I thought, what is the solution and what is the way to solve this problem, so that people can start getting better care when they need it and the help that they get is actually more relevant to what they need? That was really the catalyst to thinking about can-do at that time.
Joe: Yes, Rachael, that makes so much sense. I love the name because it’s the can-do attitude. To me, it really is about dealing with problems and not about giving up.
Rachael: Yes, well, the can-do is the brand, the brand that I’ve developed during can-do, and remembering I have a 25-year experience in advertising. I think of that as a brand. The personality is always positive, so the glass half full about solutions. Rather than dwelling on problems. It’s about finding pathways to better outcomes. We want people using can-do at the end of it all. As you know, Joe, you come out of cancer treatment and you’re not the person you were. For some people, it might be a physical disability that they have for the rest of their lives. For a lot of people, the psychological stuff going on that stays with them for a really long time. Diet, fitness, all sorts of things tend to go by the wayside when you’re sick. We want people using can-do to come out of their experience in better shape than they might otherwise if they weren’t using a tool like can-do.
Joe: Yes, fantastic. With can-do, tell us how you would go about getting this app and getting new people involved to help you out?
Rachael: CanDo is available in both the App Store and Google Play. It’s free to download and free to use. That’s thanks to the sponsorship of the Garvan Institute of Medical Research. This year, we’re sponsored by them. They’ve been able to make it so that the app is free for users. We are looking for other partners and sponsors. I’ll just throw out that little sales pitch there for anybody who’s listening. You download the app. Once you’ve downloaded the app, you then invite your friends and family to join you. In our language, we typically talk about the person going through treatment as the person driving the app.
It can also equally be driven by a carer, so a spouse or an adult child or a really good friend. A really important piece that I talk about is the person I call the bossy friend. We’ve all got that one friend who gets stuff done and organises things. It might be that person. They invite people to join through Facebook or email address. Once you’ve got your team assembled, you can start allocating the tasks. We suggest a list of tasks or you can customise whatever tasks you need help with. Like I said, it can be as simple as domestic stuff, or it can be as complicated as legal stuff or financial stuff.
Then a lot of people also, you might not be physically able to help, but maybe over lunchtime you can make some phone calls for that person, make some inquiries about a handyman or a gardener or something like that. There are all sorts of things you can do to help somebody which just takes that pressure off having to maintain their day-to-day stuff, which we all have to do. Then there’s also an update section in the app. I put that in there especially because when I was sick, and I’d come home from chemo, I’d get 20 phone calls from friends. How’s chemo? What are the doctors saying?
How’s chemo? What are the doctors saying? By the fifth or sixth phone call, you’re just exhausted and you think, “There’s going to be another ten phone calls.” This way, with the update section, it allows you to reach out to this inner-circle of friends and give them information that you wouldn’t necessarily for example put on Facebook or something like that. Facebook, I tend to think of a very curated life. Everybody is having an amazing time on Facebook. It may be that you’re not having an amazing time, so our update section gives you a safe place to share that information with your inner circle.
Then there’s a content area. In that content area, we give people ideas of how to approach sticky situations. What do I say when my friend tells me that they have cancer? How do I approach this? What’s the latest news in cancer research that’s relevant to somebody going through cancer? There’s something in the app that hopefully services a whole bunch of different needs for people as they go through their treatment journey.
Joe: Yes, Rachael, I love this solution because it caters to both sides of the cancer story. The patient, the person going through it, because all of a sudden, you don’t have to be awkward, trying to find the right terms to tell people about what you need. At the same time, for the friends and family, they don’t have to try to guess what you want because they also don’t want to do the wrong thing or say the wrong thing. I wish that something like that was around when I was going through treatment.
Rachael: Yes. I had some crazy things said to me when I got sick. People would say, “Everybody gets breast cancer now, it’s like having the flu.” Somebody said that to me. Of course, the one that you hear a lot is, “Yes, my aunty had that cancer. She died.” You think, okay, well that’s not really helpful information right now.
Joe: Thanks for telling me that, yes.
Rachael: That felt really great. In terms of understanding what people want, the example I like to give is, when I was sick, people would say, “What can I bring you?” I would, of course, say, no, I don’t need anything. Then they’d inevitably show up with a cake or a pastry or something like that. I couldn’t eat those things. Those things just made me really sick. They would just go in the bin. What I really wanted was oranges and citrus. Of course, I never asked anybody to actually bring me a bag of oranges. If I said that to you and you’re a friend of mine, of course, you’d be happy to do that, but it’s not something you’re naturally going to think of without me giving you some kind of indication that that’s what I want.
CanDo allows you to put those things out there, so that people really know how they can help you in a really meaningful way. What you said is exactly right, it’s about the person going through treatment, but it’s also about solidifying the importance of the relationships around you. It’s really important that you maintain those as you go through treatment because social isolation is a really big problem for people with serious illness.
Joe: Yes, so true, Rachael. You know, like you mentioned, you really never come out the other end of cancer treatment the same as you were before. I know it gave me a completely different outlook on life. What’s it like for you? Did your long-term goals and how you see yourself and things you do every day, has that changed? What are you like now?
Rachael: Well, things have changed. I was never somebody who suffered fools. I’ve always been very opinionated and very strong-willed. I think now I am far less likely to say yes to things that I don’t want to do, for example. Maybe in the past, I was a bit more, “I don’t really want to do this thing, but I’ll do it anyway because that’s what’s expected of me or whatever.” Whether it’s a function of age or it’s because of the cancer and because of what happened with my sister, I feel very strongly that life’s too short to spend time being miserable or being around miserable people or doing things that you really just don’t want to do or don’t believe in. I’m much clearer about what I’ll participate in and what I won’t.
I don’t apologise for those things either. I don’t know, if it’s a woman thing, as well, but I can’t do that because sorry, sorry, sorry. These are all my excuses. Now, I just say no, sorry, I can’t do that. Things like that. You just think, life’s too short for me to try and makeup an excuse, so I’m just not going to bother. I’m really focused on that. I’m really focused on making CanDo successful.
There are lots of plans for the future to make it bigger and better and also service a lot more people beyond cancer, because when I talk about this in any kind of public form, I instantly get the feedback saying, “Have you thought about doing it for X or Y?” Of course, I have, but it’s just now a matter of time and money and energy to get the other opportunities addressed. That’s my focus. I’m laser-focused now in a way that I probably wasn’t before cancer.
Joe: Do you think that helps you, as well? Being focused on this new thing that you’ve got going on with CanDo, which is fantastic, so really good on you for doing that, because it’s really powerful and that’s something that’s going to help lots of people. Does that give you a new positive focus to shape your new life around?
Rachael: Yes, it does. I’ve actually quit my job, my paid job. 25 years in advertising and I’m now in a very different world, which I really enjoy. I get to talk to people who are literally curing cancer. Researchers and scientists and specialists, oncologists, and the big cancer organisations, who are trying to solve how people live with cancer in the future. One of the big challenges with cancer is also that as treatments become more effective, more and more people survive really long periods of time, often with cancer, as well.
The numbers that are projects of people living with cancer, as a chronic illness, rather than a terminal illness, is massive. I meet people who are actually trying to solve those kinds of problems. That’s going to have ta fundamental effect on our society, our economy, our health policy, all sorts of issues like that. For me, I get a real kick out of being in situations where I learn and I’m learning every day. I get really enthusiastic about the future.
Joe: Yes, that’s fantastic, Rachael. Good luck with your CanDo app.
Rachael: Thank you, thank you, Joe.