Episode 43: In conversation with Tania and Fiona: The challenges of living in a rural area following a breast cancer diagnosis
We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.
Let’s be Upfront about living in a rural area following a breast cancer diagnosis. For people living in rural areas there can be additional stress and challenges, which may include limited, or no, local cancer treatment centres, having to travel long distances for treatment and the resulting financial impact, and having to leave family at home while you are away for treatment.
Joining us for this In Conversation episode are Tania and Fiona.
Tania was diagnosed with breast cancer in 2005 when she was 32 and living in a rural community 100kms from Adelaide. After her diagnosis she had to travel to Adelaide for tests, surgery, chemotherapy and radiotherapy.
Fiona was diagnosed with breast cancer in 2021 and lives on a farm in southwest Victoria. She had a mastectomy, four and half months of chemotherapy, radiotherapy and has recently commenced hormone blocking medication.
During this candid conversation between Tania and Fiona we hear their stories, the challenges they faced, how they coped with the hardship of travelling for treatment and the financial impact, where they found support and the advice they have for those diagnosed with breast cancer living in a rural area.
This podcast was recorded in April 2022.
- Sign up to My Journey and for a range of resources on living in a rural or regional area with breast cancer including Breast cancer information for people in rural areas, Questions to ask if you live in a remote or rural area and Financial support for people with breast cancer in rural and remote areas
- Cancer Australia Women in rural areas
- Visit our Online Network to connect with people going through a similar experience
Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Sussan.
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Ad [00:00:00] BCNA’s Helpline provides a free, confidential phone and email service for people diagnosed with breast cancer. BCNA’s experienced team will help with your questions and concerns and provide relevant resources and services. Call 1800 500 258 or email contact at BCNA org dot au. Welcome to upfront about breast cancer.
Kellie [00:00:36] Let's be upfront about the additional challenges of a breast cancer diagnosis when living in a rural or remote area. When you live outside a major city, there is often limited or no local cancer treatment services and long distances to travel. Then there's the financial impact that can add additional stress and hardship to an already significantly emotional situation. Joining us for this In Conversation episode are Tania and Fiona. Tania was diagnosed with breast cancer in 2005 when she was 32 and living in a rural community 100 kilometres from Adelaide. Fiona was diagnosed with breast cancer in 2021. She's had a mastectomy four and a half months of chemotherapy, radiotherapy and has recently commenced hormone blocking medication. Fiona lives on a farm in southwest Victoria. This episode of Upfront About Breast Cancer is an unscripted conversation with our guests. The topics discussed are not intended to replace medical advice, not necessarily represent the full spectrum of experience or clinical option. So please exercise self-care when listening as the content may be triggering or upsetting for some. Over to Tania and Fiona.
Fiona [00:01:55] Hi Tania. It's great to meet you.
Tania [00:01:58] Hi, Fiona. How are you? Lovely to meet you.
Fiona [00:02:01] Tanya, could you tell me a little bit about your journey and what's happened to you?
Tania [00:02:05] Yes, it's been about 17 years since I was originally when I was diagnosed with breast cancer. So I was 32, living nearly 100kms out of Adelaide. We had a dairy farm at the time, so that was an interesting mix. I had three children, the two youngest was two, so it was an interesting time trying to work around cancer treatments, dairy farming, kids, school, just the travel online and trying to organise appointments on one day as opposed to two or three times a week with the costs of not just the medical appointments, the travel appointments for me meant driving to Adelaide every day or whenever it was required. So nearly 200 kms round trip. And because I was under the 100km CAPS scheme, I wasn't eligible for any help. Most of the time I did drive myself. It depended on what the tests were for. So my husband would try and drive me down when he could. Sometimes the medical appointment had to be done like first thing in the morning or later in the afternoon, because God forbid anybody could live outside of a city area and have to drive any more than 10 minutes to get there. So it meant I had to drive myself down. Your treatment and diagnosis is a lot more recent. What was your experience like Fiona?
Fiona [00:03:34] Yeah, probably quite different to yours. And so with where we live, we're about 60 kilometres from a reasonably large rural centre, a lot further from Melbourne, and we're fortunate enough to have cancer services in that. So for me it's, it's 60 kilometres to that centre and back again. So my experience was also coloured a lot by the COVID lockdown. So we got caught up in that little can of worms. So I started off visiting my GP after I'd found a lump and the testing started and I was in a bit of denial and so it took me a week to make the appointment and then they said, Oh, we need you back for something else and oh look, I'm too busy at work. I'll, I'll, I'll get to that in a week or two time. Eventually got there and had the testing done and they were good enough to try and squeeze testing on the one day for me. So I was there having the mammogram and they said, look, you're going to need a biopsy. And I said, Is there any chance of you doing it today? I don't really want another trip. And they were really obliging and very helpful. So I have to be grateful very much to the imaging people there. They did a wonderful job and that saved us a couple of trips. Over the course of the various tests that I had. Things moved really quickly for me though, back to my GP and then on to a surgeon and I got in on a cancellation within five days of seeing the surgeon. So I had a real rollercoaster from denial through to having the surgery done, and that was right in the middle of the lockdowns. There was no visitors, no nothing. Through that whole hospital stay. So that was that was a bit traumatic and quite difficult on my husband we because we 60 kilometres it's not far enough for him to have stayed where I had the surgery not that he could have visited anyway. So everything's sort of done in these, these day trips and that's okay, we manage that alright. And then it continued on into chemo and radiation. Chemo fortunately was also available there and that was just day trips and like you the nuclear medicine scan it was he come in, have the injection, will see you in 3 hours. Go have a cup of coffee. Well, in the middle of the COVID lockdown, there wasn't any coffee in there anyway. So I think we might have spent the whole time to sit in the car because it was too windy and cold to go anywhere else. So it was a very boring day. And yeah, then my journey carried on then to the radiation. I was fortunate to be accepted into the travel assistance scheme because that was daily radiation for five weeks. I did actually just make it over the line because it was every day. Technically I didn't meet the guidelines, but the ladies at the Radiation Centre were very helpful in providing all the documentation. They just said, give it a go. So I did and we did get some financial assistance for that, which we were very grateful for. So when I went to visit my GP and after the biopsy the diagnosis came back that I had a ductal carcinoma and the scans sort of seemed to show that it was around about four centimetres, but it didn't appear that there was any anything gone to the lymph nodes, which I was really grateful for. However, when the pathology came back from surgery, it was a little bit different to that. It had spread to the lymph nodes and it was also a mixed kind of tumour. I had elements of both ductal and lobular, which might have explained why it hadn't been picked up early, why I hadn't seen it. And so that meant that I fell into a moderate to high level category for risk of cancer recurring, and that meant that chemotherapy was required. I had three cycles of one particular drug cocktail, three weeks apart and then another three cycles of another drug also three weeks apart. And I guess because of my professional background, I'm a physio. I was really keen to stay active through that time and I managed that quite well during the first three cycles and I fell in a heap for the last three. That drug affected me in ways that I hadn't anticipated. And it's it's a tricky time in that you just pick yourself up and dust yourself off from the chemo after after that. And then they start hitting you with radiation. And the radiation, they were they were great, really helpful. And I think I fed fairly well in that. But you never know with the side effects what's causing what. And you pick yourself up and dust yourself off from that. And then they hit you with the hormone treatments, which is where I'm at at the moment. So it's been a bit of an interesting, interesting ride.
Tania [00:08:09] When you're talking about side effects, what sort of side effects, as I know mine varied from, you know, I had really good days to, you know, over the toilet for most of the day or, you know, I really tired. How did how how what sort of side effects how did how did you stay with that?
Fiona [00:08:28] Okay. So everything was different every time with the chemo. I couldn't put my hand up and say, right, I know what this is going to do to me. I can prepare for it and be right. So the first cycle of chemo gave me a five day migraine, which I really did not appreciate at all. And the nausea was horrific. But I don't know whether that was the migraine or whether it was the chemo. Tiredness, and I was just exhausted. I couldn't think straight. I'm sure I said some stupid things to my husband. He hasn't hasn't brought those back up at me, fortunately, but I'm sure my brain wasn't functioning. And then the middle week, I actually wasn't too bad. But again, because it was kind of at times I kept well and truly out of circulation in that time. And then I actually went back to work for a couple of days, the final week before the next round and the next month. They just affected me different ways every time. Nausea was high on the list, but I think what it did to me more was changed my thinking skills. So I wasn't remembering things. I couldn't express myself properly. My brain wouldn't work. There was brain fog, the second lot, the second medications. It affected me far more physically, so I ended up with a lot of foot pain. I couldn't walk and walking's my go to coping mechanism. That medication also made it very difficult for me to exercise, which was my other coping strategy. The radiation side effects were more about fatigue and skin irritation, and they didn't bother me anywhere near as much. And yes my hair fell out. And it hasn't grown back yet. But you know what? There was a hidden advantage to that. I was starting to get hot flushes already, so you lose heat a lot quicker when you could pull your cap off and there's nothing on your head to stop it.
Tania [00:10:09] Yeah, you definitely do. I know that feeling. For me, it's very similar to, you know, I didn't have the neuropathy and the pain in that. I was lucky enough that I didn't have those side effects. The nausea, the tiredness, all those normal chemo and radiotherapy side effects for me, being active on the farm and with the with three kids, one being a two-year-old, you know, working on the toilet training before I was diagnosed. And then that went south really fast with me going through all the treatment. The brain fog, the chemo brain that was probably for me, you know, I'd find a nappy in the cupboard, the pegs in the fridge, I'd forget to feed a calf up. And I'm not I'm not you've missed one or you've missed or you've forgotten something. So, you know, it was great that I had my husband and all the kids support that. You know, it made it interesting. It’s probably the best way to put it because you have all those feelings and you know, you go from your ups and downs and you know, because we are so because as you know, living on a farm, you are isolated. So the city people don't really get what you go through, the added headaches for lack of a better word, of just trying to arrange travel and making city appointments, medical staff aware that you need to have and so far you need to put them all into one day as much as possible as opposed to just hours, this one, this, this on the next day. And that added extra level of hardness that city people don't get.
Fiona [00:11:52] So, Tanya, I know that dairying is a twice a day pretty well 24/7 job and I can't imagine how you guys manage that. I mean, the cows have got to be milked every day. Did you call people in to help with the milking? Did you have some assistance there? Because that's it's a big deal trying to pull out the milk, things like that. It's just not an easy thing to do.
Tania [00:12:12] No, we couldn't because my husband is Italian. His parents are very traditional. They were part of the farms. It was a family run business. And I know it sounds really bad sort of in hindsight now I'm a bit more understanding of where they're coming from with their beliefs and the way they were brought up. So no, we weren't able to tell anybody, so I don't know how we did it. So. Our oldest was 15 at the time, so he helped out a lot on the farm. I continued working where I could and my in-laws looked after the two younger ones where they needed to that day. They do meals occasionally, but, you know, we had to be very self-sufficient just to keep the peace. And keep what help we were getting.
Fiona [00:13:01] Yeah. And I can understand that that self-sufficient thing. I think that's a really big, big theme, rurally. And I see that in my work a lot that, you know, people want to deal with things themselves. And even if you want to reach out, it's difficult to, because you don't know who knows what. And as soon as you do, it's all around the community anyway.
Tania [00:13:19] Yeah.
Fiona [00:13:22] And people might be being supportive, but you probably hadn't intended on them knowing exactly what was going on. So yeah, I can imagine that would have been really tough for you in those circumstances.
Tania [00:13:32] Yeah, it was. We got through it and I think, you know, we as hard as things are, you know, I don't know whether it's because we're farmers and we live rurally or, you know, we just I come from a long history of farming, farming family. So it's just you just put one foot in front of the other and you get up, you keep going. I think it's just one of those things. I think it was ingrained into, you know, the way I've been brought up.
Fiona [00:14:03] Absolutely. Same for me.
Tania [00:14:05] Early in my treatment, I was put in touch with a social worker in Adelaide through the Queen Elizabeth Hospital because that's where I had my chemo. And that was good. That was, that was someone to talk to. Being a metropolitan social worker had the best intentions, but no understanding of the added challenges. And back then it's like, you know, we're talking 2005 in a rural area, you know, internet that was dial up. And if you're really lucky, it would load. You know, I was only 32 with a young family. There was no information out there. I googled as much as I could. I looked in the library for books, any information I could get about it. And then it wasn't until I was in hospital after waking up from a surgery to remove the lump from all my lymph nodes that a lady who works in the hospital, she was not a nurse, but she's in the admin side. She came in and she actually lives in an adjoining rural community, sits from about eight kms down the road and she goes, ‘oh have you heard of Breast Cancer Network Australia? They’ve got all this information’, you know, from there I got the My Journey kit which had the booklet on breast cancer in young women as well. Thank you. At the time there was a breast cancer. So this was prior to the McGrath Foundation, worked a couple of days a week. She was amazing. She had all the information that I needed. It was go straight to her, you know, give her a call. And our kids went to the same school, too, so I could talk to her, like, outside of work. So with you, Fiona, where did you find your support? Hopefully you had more support than what I did.
Fiona [00:16:05] And my family were really amazing. I made a decision very early on not to try and hide my diagnosis, and that was largely around my work. So I was very busy with work in the local town and knocking back work left, right and centre because there are not enough health professionals out here. So I did that for a very selfish reason. I didn't want to be answering the phone left, right and centre and saying to people and know, I'm sorry, I can't see you. I'm not well. So I just let it out there and said, okay, this is what's happened, don't ring. And they didn’t. And so support wise because it was in the middle of the COVID lockdown, there was very little. I remember the first day after my surgery, I was pretty doped up and they wouldn't let me out of bed very much and I was desperate for a shower and they wouldn't let me and I was very cranky. But that's another story. The second day, they finally I finally convinced them that I was allowed to get out of bed and that I was going to have a shower. So I went into the shower and with the assistance of a pretty young nurse, I must say she was lovely. Nothing wrong. She's just very young. And he's a 50 year old woman, stood in front of the mirror, burst into tears in front of this poor young nurse. And she's just like ‘ohhh’. I don't think she knew what to do or say, and that was just a bit of shock. So I think that probably would have been a really good time for some support to have been arranged. But but nothing happened. And I had some SMS contact from the breast care nurse but didn't see her until the day before I started chemo. And I think that's partly due to the COVID restrictions and lockdowns. I actually haven't seen her since. I wasn't put in touch with any social worker or psychologist. I was advised at some point, I can't remember when, that that was available, but I ended up having chemo at a different location to where that was available. So I was remote from there anyway, so the support was fairly well-lacking. I had a good relationship with my GP who then packed up and left. So the support was tricky. I didn't actually know about BCNA until a throwaway line from the nurse that I saw. So a breast reconstruction nurse that I saw who was filling up the expander for me. And I didn't actually even think about that until a week or so later. And then I jumped online and some of the early diagnosis information was really helpful to me at that point. And a bit later on I joined that online network and I never posted anything, but it was actually really helpful for me to read what other people's experiences had been. I think the risk when you are not necessarily supported face to face or with a lot of people around you or in some kind of a group setting where you can discuss this with people, you start to wonder whether you're abnormal and experiencing things that nobody else does. You start to wonder if you're a bit weird. And I was starting to do that. So it was really helpful to actually read what some other people's experiences had been. I must say I did feel a little bit like I was peering in on other people's lives without licence, but I found that very, very helpful as well.
Tania [00:19:23] As I know internet in a rural area, Internet can be interesting at times. Because you found a lot of information online. You've found the BCNA’s great online network. How did how is your Internet? Did you have issues any issues there or are you are you in a black spot? Are you in a good area?
Fiona [00:19:47] No, we're in a terrible area. We're just short of needing satellite. Now, that's amazing because where we live is not it's not a low, lonely populated area. There's heaps of us there. Unfortunately. We just happen to live right in the middle of the end range of three separate towers for wireless broadband. And so a poor router, it spends most of its existence deciding which direction it's going to take a signal from rather than actually doing anything useful. So at that stage, we we actually we had Internet from three different companies. And when one fell out, we try the next. And when that fell out, we go to the third one. And when that fell out, we'd go back to the first one. So we'd spend more time switching between providers and actually online. And we were paying for something like 50 megabits per second and we were lucky to get two. And so, you know, we were having the, the usual experiences for our region anyway. Halfway through that time we switched NBN providers to another one that's been more active in our area and things became a load better after that. But if I was awake on a night, couldn't sleep, there was no point me going up and checking the internet because in order for anything to work, we had to have it on a timer where it would switch off between 11 and 4 a.m. to give the whole thing a big rest. And our router is out in the shed. It's not even in the house, so there's no way at midnight I was nicking out to turn that on just to get online. So no, I didn't do anything like that.
Tania [00:21:19] Which is something that people in city metropolitan areas really have, They take for granted. They just don't get that. You know, if you live in a city you get internet super fast, you just press a button. It's there, but it's an issue out of those metropolitan areas. It's ‘oh is it going to work today or how fast is it going to go, can we load a picture internet’? But yeah, everything's online now, you know, paying your bills, Internet, banking, it just. Doesn't always happen which people in the cities don't get.
Fiona [00:21:55] It can be very, very up and down. And I'm guessing you've probably got a similar experience in your area as well.
Tania [00:22:02] We did up until we've got we're lucky enough to have satellite now. So we get satellite broadband. It's not always the fastest. But it works. And when we were on, we were on dial up until probably about five, five years ago. It's so much better. So, yeah. So, moving on. How did you go with meals like did you were you cooking or did you have someone who came in to help?
Fiona [00:22:36] No, we came because it was COVID that there was it was the rules at the time when nobody in anybody else's houses and I know caregiving was an exception. But we didn't go down that track. My parents live next door, which next door is about half a kilometre away, but it's still next door. But they're in their mid-eighties, so that wasn't something I was about to ask them to do. But I pulled up fairly well from the surgery and I saw me doing basic meal preparation as part of my rehab. So I did continue to cook. After the surgery, my husband stepped in and helped where needed because I certainly wasn't able to cut a lot of things up. I'm very right handed and it was right breast that was removed. I had one offer from a friend to drop her and some food, which I declined because I felt like I needed to actually do that job. On the really task focussed person. So I've got a list of things to do on my on my job list that that keeps me going and it stops me from dwelling on things that I can't change. And I think that was actually a really important coping mechanism at that point in time. So we did that ourselves and, and, and that was okay. That suited us. But I'm sure it wouldn't suit everybody.
Tania [00:23:53] Yeah, I guess I remember, because I wasn't allowed to tell it. We weren't allowed to tell anybody. My in-laws are great. Don't get that wrong. You know, that were great. They did they did help out as much as like as much as they could, especially it was and it was really helpful when, you know, they'd take the youngest, you know, during the day so I could have a sleep or if I felt up to it, you know, I could go help on the farm, which was good. It kept me active, which helped, which helped with my recovery and helped with the side effects. So I'm glad that I had that because if I didn't have that, I wouldn't have might not have coped so well because as you know, keeping active during treatment is vital. I also got involved with we had a cancer support group locally and they and the lady who ran out was Charlotte. She was really great. And fortunately the issue was everyone. All the ladies involved were all in their seventies, eighties. I think there was one little old lady of the nineties. God bless. So, you know, while they did their best to support. They didn't, I suppose they couldn't understand where I was coming from. Yes, I knew the side effects and that. But, you know, I'm being a young mum, with some of them to come off the farm, said that was they understood the work side of it but just being a young woman with breast cancer and dealing with a young family, school, being put into menopause at the age of 32. It was it was an outlet, but it wasn't you know, it was support, but it wasn't like the support I really needed. Cancer Council were great. They put me through Cancer Connect, put me in touch with a lady who similar age but had as they called it back then pre-breast cancer. She rang and we'd have a chat every now and then when I just, just needed that outlet to talk to someone that was my own age and I understood. So, yeah, that was great. So. Yeah, it was interesting, you know. How did you go? Do you have any children? Did you have anyone that you need to look after?
Fiona [00:26:37] So, no, I don't have children. So my husband and I live in the house next door to my parents. So yes, we provide some care to my parents. I don't need very much. They're pretty self-sufficient themselves and they don't ask for help. Usually we have to anticipate it. But I'm the primary, not carer, about financial manager and plan manager for my sister who has an intellectual disability and lives in a nearby town and she's covered under the NDIS. So I think it was just before my diagnosis things had started to get difficult with her. She has a concurrent health issue that means she was burning through her support hours at an alarming rate and we knew there was a problem and I'd been at the NDIS for some months about this and it finally came to a head around her diagnosis and she ran out of funds. So yes, we needed some help there. The people supporting my system were fantastic. There were staff actually going in pro-bono to help her for no money, which was just amazing. But yeah, that was an added layer of stress that I really did not need at the time.
Ad [00:27:49] BCNA’s Online Network is an active peer to peer support community where people affected by breast cancer can find information and connect with others who understand what you're going through. Read posts, write your own, ask a question, start a discussion and support others. The online network is available for you at every stage of your breast cancer journey, as well as your family, partner and friends. For more information, visit BCNA dot org dot au forward slash online network.
Fiona [00:28:24] Tanya, did you get support from within your local community? I hear what you're saying, that the pressure was not to talk to other people about your diagnosis. So, did you manage to get much other support from the community where you work with? My my experience was so completely different, I'd let everybody know.
Tania [00:28:41] No, because no one was allowed to know. We were allowed to tell anybody. I told my immediate family. Realistically, I don't think we were meant to tell anybody. But, you know, we still told close friends that I knew. So if we were meant to go there one day and all of a sudden we bring up a say, look, we can’t make it they would understand. And you know, they were supportive, too. I mean, they live for me an hour and a half away. So support for day to day things wasn't like, you know, I couldn't just bring around a meal or what, you know, I would come do some cleaning or whatever, but it was more that emotional support that was really good. You're going to having breast reconstruction. How are you dealing with that?
Fiona [00:29:30] So this is this is another thing that I relied on that online network for quite a bit. So I joined in the breast reconstruction group and followed a few people's journeys there for a little while. It's going to be an expensive exercise. It's one that I'll follow through because I can't handle the sensation of the expander being there. It's it's really quite uncomfortable. And my job usually involves going to a hydrotherapy pool quite regularly, which is why I made the decision to go down and have a reconstruction, because all I could see in my mind's eye was a prosthesis coming out in the pool and me having to dog paddle after in front of all my patients. And that did not fill me with joy.
Tania [00:30:14] No.
Fiona [00:30:15] So and look, maybe the prostheses are better than that, but at the time when I had to make the decision about whether I was going to go down that path early, which to me makes a lot of sense medically, that was all I could think of. And I just said, No, I'll have a reconstruction. So yeah, I'm booked for a reconstruction at the start of June. That'll be three months after I finish the radiation. The plastic surgeon was very clear about that, that that amount of time needed to elapse. And I can't wait to get rid of the expander. I went to the pool as a trial last week. Things floated where they had an orderly floating. It was a very uncomfortable experience. It's not exactly socially appropriate to be holding a breast down. So I'm not going to get into the pool very much. And if I do, I'm going to have to have something else on than what I had because it just did not work for me.
Tania [00:31:13] Yeah, but yeah, it's really good. You know, as much as it's stressful when it's painful, we can laugh about it. I think that's what gets us through being able to look at the funny side enough.
Fiona [00:31:28] Yeah, absolutely. And well, the, the, my current funny side one is that the hair on my legs is growing back a lot faster than the hair on my head. And I think that's the ultimate insult and nobody can tell me why that happens. It's really annoying.
Tania [00:31:45] My hair grew back so thick, it was unbelievable. But for the rest of my body, shaving - what's that? Occasionally. Once, maybe once a month, if I need to. I play netball, so I wear a short dress. And, you know, I used to have to you know, I used to have to shave my legs to wear shorts or anything. I'll take my legs. A lot of this might be one hair. I'll pluck it out. So that's what this thing on it. As heart rending and as stressful as losing my hair was, coming out of it now, is like cool. It was like one of those as an added benefit. And not everybody gets it, but it's one of those great things that comes out the other side of it. How did you go for your expenses? Because I know with me I did private and public. I did a mix of the two because I suppose it's just the way it works. Some areas public works and other areas private way better than the public system could ever dream of. So my surgeon was private because my GP couldn't get me into the public system and he was great. I don't know whether, you know, he looked, he took pity on me, or his rates were not too bad. You know, Medicare covered a bit and that it was still an out of pocket that we had to pay, but it wasn't too bad. And at the time we had a health care card. So I think we were really lucky that we had that because it made thresholds lower for us. My chemo was public. And as great as the public system is, I don't know if it did come back, I don't know whether I would go down that path again. I suppose it is more because I live in a rural area. We had to get up early milk cows. It was a full day, come home and then it was milking. I mean, we're not milking anymore, but it's just the full day. It's really hard on yourself and all those trips backwards and forwards to Adelaide and I hate to be doing it now with the price of petrol now. And you're probably seeing that with your trips. So it's just hard. I don't know how people can get can do it because I know it was bad enough for us at the time, especially when I was doing radiotherapy. That was six weeks. I mean, not weekends, but every other day for six weeks. So we ran through a set of tyres with it. We went private with radiotherapy. It was either go privately for radiotherapy or stay down in Adelaide for six weeks at the Cancer Council Lodge, which for us it just wasn't going to work, not with young kids, not with the farm. So the first week was about $1,000, for the first radio, but the Medicare safety net kicked in. So after that, after the first week, Medicare paid for pretty much most of it. And by the time we got to the end of it, they were paying for all of it. How did she go with all of that?
Fiona [00:34:58] Yeah, like you, I did a mixture of public and private, so I was very fortunate. Our health funds been very good. So there was some out of pocket with a surgery. I think I wouldn't have chosen to go public with the surgery, given I got in five days privately. I think if I'd had to wait any longer, I'd have been a well, I would have been a wreck because I wasn't sleeping. And if that had lasted for a couple of weeks, I can't imagine what I'd be like. So that was private. That was out of pocket there. The chemo I ended up going private for as well. The primary reason for that was that they actually had exercise equipment in with the chemo suite. So I was actually able to exercise while I was having chemo and that's something that's a relatively new innovation, but they're showing that that can actually be helpful. That wasn't available public. So that's one of the reasons why I did that. The oncologist is through the public service, the radiation oncology and radiation was public and, sorry, it's private, but it was bulk billed and that was done that way because there's no choice. It was one provider and that's all. So yeah, a mixture. And I'll be going private for the reconstruction because I'm in a hurry to get the expander out and on the public list, especially with COVID, that could be a couple of years and that that's just not going to work for us. So we'll cop the out of pocket for that. Yeah. So it makes you like yourself.
Tania [00:36:28] Based on our joint experiences, mine was a little while ago, but still it's still very relevant for people that live, you know, regionally and rurally. I'm very more recent. What sort of tips would you give someone who was just getting, just been diagnosed?
Fiona [00:36:54] Yeah, look, I think rurally it's going to be really important to link in with whatever you can so the BCNA resources were really helpful. I'm sorry that nobody pointed me to those earlier. That would have been really helpful. I read the Cancer Council booklet and it was good, but I think the BCNA resources perhaps provided a little bit more of what I needed on more an emotional level and the online network. I think that was really helpful for me. So I'd encourage people, even if you're not comfortable posting yourself, join that network, even if it's just to see what other people's experiences are and to reassure yourself that, you know, this is okay, it's normal, you're going through something, it's unpleasant, and it's okay to not feel like you're coping. Because I think it's a really difficult time. And if you're not able to have face to face support, then that's probably your next best option. And for me, that was really important.
Tania [00:37:50] Yeah, I definitely agree because things have changed so much since I was diagnosed. It wasn't you know, there wasn't that online support, there wasn't that online community. I'm part of that online community now because, you know, I breast cancer, you know, we go through a treatment, but it just doesn't go away. You know, I was on hormone therapy and it came off about three or four years ago. And there's always the fear of recurrence and that and that's where I've found, you know, the the support that basically I have online through the online communities is amazing. So, yeah, I agree. I totally think, you know, anyone, anyone I've talked to that's just been diagnosed, that's one of the first places I get on and have a look there, join up, have you got the My Journey kit? You know, BCNA’s fabulous resources. I mean, you've got Cancer Council, too. That's got to be mine, you know, and then thinking it after that, you know, your planning of trips. And I think finding for me, finding someone who can help you advocate with the medical professionals if you've got to travel to a major centre or in my case, our state capital and hopefully, you know, there’s a breast care nurse, whether it's a McGrath breast cancer or I just once put on by the local hospital, get in touch. And if they haven't already made contact, make contact with them finding out what other resources are out there, you know, whether you qualify for PATS or is there a community transport network scheme that you can get in to help you with the travel and help you plan those appointments?
Fiona [00:39:31] Yeah, and I think that's a really good tip. I didn't know that I needed to contact the breast care nurse or to put my hand up for help. I somehow thought that a lot of those things would have just been offered, or there'd be some kind of a support group or network or something locally that I would have been able to tap into to find that that didn't happen. And it's interesting. The other thing that I think occurred is because I'm a health professional myself, I think the assumptions made that you just know all that stuff anyway. And if anybody else is in that situation, the breast cancer was not part of my world before diagnosis. And no, I don't know about that. I might be a health professional, but breast cancer was not what I did. So I think if, you know, there's anybody else out there really experiencing something similar, it's probably worth having somebody with you who can advocate for you because you do cop a lot of medical professionals assuming things that you may not actually be able to do. Like the oncologist who told me to go on YouTube how to insert my own implant, said, go to the YouTube and you'll be right. I don't do needles!
Tania [00:40:44] Oh, no he didn't!
Fiona [00:40:48] So I took the I took myself off to the practise nurse at my GP said and said look I've been told to you try this, I had to look at it, I can't face it. You're going to have to do it. And she's been great. And maybe one day I'll get around to doing it myself. But so please don't let people take you on that journey that says, Oh, you'll be right. Because I can imagine my dad used to put needles into cows and that's the next thing. Oh, you're a farmer, you can shove a needle in. It's just like doing it to a cow.
Tania [00:41:17] I don't think so!
Fiona [00:41:25] And sorry, that was a little bit of a diversion, but anyway.
Tania [00:41:29] But it's a very real thing that rural people get. It's, you know, like they wouldn't think of sight. You wouldn't even think of saying that as someone who lives in the city. It's unbelievable. Come and try it on my Internet connection first.
Fiona [00:41:51] Yes, I was a little taken aback myself. But anyway, I look, it's not I suppose it's not technically difficult, but the thought of doing it after what you've been through and they had lots of trouble finding veins in me. So I look at a needle now and my veins just die. They, they don't stay anywhere useful at all. So yeah, I'm sure I'm not the only person like that and maybe I'm not the only person who it's been suggested they can do it themselves. Then maybe that was one bridge too far for me.
Tania [00:42:19] How did you go with travelling? I know for me a espcially when I was doing radio, I made it my time, the hour trip each way. That was very much my time so I cracked the radio, chuck in my favourite tape. Not CD. But I think the car had a tape or the radio and that was my time where I just zoned for me. So that's how I managed to cope. How did you cope?
Fiona [00:42:54] That was the time that I was actually taking myself through the podcast series with Charlotte Trotman and it was my emotional time. So the box of tissues did get used a fair bit in the car in those journeys because it was a time where I felt that I could listen to and deal with that. And it wasn't another task that I could do because I was driving and I was well enough to do all the driving myself and it was about an hour and a half round trip, so I'd get through one or two podcasts and some of them I'd listen to multiple times, and that was really helpful. It's making me a bit emotional now as I'm talking about it, I think that was a time that I was able to to spend thinking about that side of things. And I think that's part of an ongoing journey that I'm still working through. But yeah, that's how I did it on the podcasts. That was a really good time for that. And at that point in time, we, we ran some pretty old cars. So I was plugging the mobile phone in and just cranking the volume up high and hoping to goodness reception didn't drop out while I was driving. And now I've got a modern car and I just tell it play podcast and it comes up very exciting.
Tania [00:44:07] Just comparing our two experiences. It's amazing how in some ways it's the support has just come so far. But then, you know, there's still things that we we've both dealt with that haven't changed at all that, you know, really do need to be changed. Yeah. Especially, you know, the support in areas is really great. But in other areas, just when it comes to the city versus rural, it hasn't changed. The city needs to do better.
Fiona [00:44:33] There is also the issue of some of the health professionals not being available. So social workers and psychologists are very thin on the ground and maybe COVID helped us out a little bit there because there's telehealth in my circumstances. I work right next door to a psychologist and she she'd be great and she'd be lovely. And there's times I’ve seriously considered phoning her up, but I just can't quite imagine myself walking out of my office and trundling in next door. And people in the cafe right next to were going, Oh, this feeling that, oh, she's going to say, whoever. So I think there's issues with an amenity, you know, and being able to do that in a like private or sensitive way, rural is quite, quite a bit more difficult perhaps, and it is where you might need to go to the next suburb. But for me to do that, I'm going to have to do another hundred and 20 kilometre round trip to do that. So yeah, yeah. And I'm sure again, I'm not the only person like that that's going to be a common rural experience because psychologists and social workers are very thin on the ground, as I'm sure you know as well in your area.
Tania [00:45:36] Yeah, exactly. They don't have those access to services in rural areas that people take for granted in the cities. And it comes down to distance and then comes back down to the dollar. You know.
Fiona [00:45:48] And I think there's also a reluctance for some health professionals to come rurally. I know we're very short of them in our area and I think that's common across rural areas for health professionals of all sorts, not just psychologists and social workers, but for everyone. Yeah. And it just makes access for all sorts of things difficult. So I mean, for people who may be needing ongoing help with lymphoedema or something else, again, we've just got that long journey to find somebody who specialises in that area. That can be a real barrier for people, I think.
Tania [00:46:16] Yeah, exactly. Well, it's been lovely to talk to you today, Fiona. Thank you.
Fiona [00:46:22] Thank you as well.
Kellie [00:46:25] Thanks to Fiona and Tania for sharing their stories. This podcast was brought to you with thanks to Sussan. BCNA My Journey has a range of resources for people affected by breast cancer living in rural and remote regions of Australia. You can sign up by visiting my journey dot org, dot au. And don't forget, as the ladies mentioned, the BCNA’s Online Network is an online peer to peer support community where you can connect with others going through a similar experience depending on your internet connection. To join Visit BCNA’s website. Don't forget to subscribe to Upfront about Breast Cancer to ensure you never miss an episode download so you always have one to listen to and leave a rating and review to tell us what you liked about the episode. If you can complete the survey, you'll find it in the show notes and this helps us to tailor and create content that's relevant to your breast cancer diagnosis. Thanks for joining us. I'm Kellie Curtain. It's good to be upfront with you.
Ad [00:47:28] Looking for practical information to help you make decisions about your diagnosis, whether DCIS early or metastatic breast cancer. BCNA’s My Journey features articles, webcasts, videos and podcasts about breast cancer during treatment and beyond to help you, your friends and family as you progress through your journey. It also features a symptom tracker to help you manage the changing symptoms you may encounter during your own breast cancer experience. My Journey - download the app or sign up online at my journey. Dot org dot you.