I was seventeen when I met Nick, I’d just finished year twelve and it was December after exams- I was enrolled in uni but hadn’t started yet. I saw him at the cricket and then he went away for a few months over Christmas. We met up again just before I turned 18 at a pub and took it very slow. We’ve been together 20 years now, we said we probably wanted kids but not for a while. In my mind, I was thinking thirties, and we didn’t even really want to get married until in our thirties either. We lived overseas for a bit and had lots of three-month holidays backpacking during university holidays, I’m 38 now.
We were kids when we met for sure we both changed a lot but I guess we changed a lot at the same time; we were on similar journeys and got engaged when I was 31. By the time I got to about 28/29 I was like come on you should know by now- we’d been together for over ten years but he wasn’t quite ready to settle down yet. I think I said I wanted to be engaged before thirty and a few months before I turned 31 we got engaged. We were living in America but came home for three weeks and got married during that time. We decided we wanted to move back to Australia so we went back to the states for nine months wrapped up our lives there and came back home, when we arrived here we had no money, no jobs, nothing so we were back at our parents; I’m a scientist and Nick works in IT.
So, three months in my parent’s house at 34 until we both found jobs and then we moved down to Ocean Grove. At that point we decided we want to have kids, a year and a half after moving down to Ocean Grove we fell pregnant with Jess. It took about six months to fall pregnant- it changes everything, doesn’t it? You question what you do sometimes, it’s amazing and it’s hard all at once. I think Nick hadn’t had much experience with babies or little kids so I wasn’t sure how he’d go but he took to it straight away and has been hands on the entire time. Everything changes, you can’t put yourself first anymore it’s your children first, it’s much harder to just get up and leave. It’s really hard to get back into work after being on maternity leave and there aren’t too many females in my position that have children and come back and be as successful as they were before. There’s a lot of pressure to keep going full time. I’m a part time postdoctoral researcher, after your PhD it’s the position you take before you become a professor, the in-between stage and its really hard to get a position full stop because its government funded. You rely on grants and they’re extremely competitive, it’s hard to be competitive when you’re not full time. I’ve been extremely lucky the head of my lab is a female who’s about 10 to 15 years older than me so she’s done the exact thing I have. Her kids are in high school now and she had a really understanding boss who let her go part time, so she’s carried the same on to me. I’m still not as competitive as my male counterparts at the same age but I’ve got to the point where I’m ok with that. Even if I was working full time, before I got sick, I was four days a week. If I was full time I still couldn’t devote as much time to get ahead, you have to put in extra hours- the same with a lot of professional jobs- more than just your 40 hours. I’ve been working on malaria for five years. Nick and I knew we wanted at least two children and close together. When I went in for a check-up with Billy (my youngest son) my obstetrician said to me you’re not geriatric yet that’s next year and I was like 38 really? In my head, I’d like to have had my kids by then and in the end our kids were two years and a few months apart. We started trying for Billie when Jess was about one and a half and it took about four to five months. Jess was nine months old when I went back to work, it’s pretty tough, your brains still all over the place and you feel horribly guilty leaving a nine-month-old in day-care. She was in there two days a week and eventually moved up to three days. I felt torn every morning, it’s hard to do everything. I tried to voice that concern to Nick and he did do more than what he was but it’s still nowhere near what’s expected of the woman. Half the time it just doesn’t occur to them and you get sick of always asking them to do things. He did as much as he could and at that point he was working from home down stairs so he could do things at lunch time and get things out for dinner, that was really good. It was just a huge juggling act and they’re sick so often their first year luckily Nick and I took turns in who could take time off work. I felt pressure but I’d put that on myself I didn’t feel it from my workplace. After Jess I knew I wanted to go back to work but when the date was looming I was dreading going back and it took me about a month of being back before I began to really enjoy it. In the beginning, I was just enjoying the social side of it to be honest, just having a coffee or lunch. It took a while for my brain to get back into working mode but then there was a switch and after a few months I just became more comfortable. I would drop Jess off at day-care and sometimes it was traumatic because she was quite clingy and would cry, then I would have the half hour drive to work where I went from mum to scientist. I could do my hours at work and come home, I was doing the bare minimum so I was basically just doing 9am-5pm. It was quiet a flexible work place so if I came in a little late that was ok and I could also do some work from home. I still found I wasn’t at my peak from before and it probably took a good six months before I got into it but then it wasn’t too long before I was pregnant again. I worked until three weeks before Billy was born, it gets tough towards the end.
I took another nine months off with Billy and I was really looking forward to going back to work, I wasn’t dreading it like I was with Jess just because I knew it was a release from being home with two kids. It’s intense, it drives you crazy sometimes I love being home with them but I also enjoyed ‘me’ time so I went back two days a week and then three days and eventually I worked up to four days a week; I was probably doing four days a week for about a year. That was perfect for work, that three days a week was much better for home life. I was having a bit of an internal struggle on whether to do three or four days, luckily Nick’s parents were coming one day a week so I could keep them in day-care three days. His parents watched them one day; four days was really tough on home life- cooking dinners and all of that stuff and we kept deciding we would get a house cleaner but never got around to doing it. At this point, Nick had changed jobs and was commuting to Melbourne so he was doing that four days a week and that was really tough because we only had one car in the beginning. He wasn’t getting home until 7.30-8pm at night and the kids were in bed it was getting pretty frantic and then Nick changed his work hours and left earlier. He was able to work on the train and that counted as his work day, we got into a groove where he would get home at 6.15-6.30pm I’d feed them dinner and he’d be around to put them to bed. Things were going along quiet well for a good six months I think and professionally I was going well. I just got a whole lot of research and had just gone to the USA. I got some funding to go to a conference that was near New York on work I’d done, I was invited to do an oral presentation which was a big deal. It was the first time I’d done it since moving back to Australia and working in malaria, Nick decided to come and we made it a kid free holiday. For two weeks, we enjoyed each other’s company and realised how fun it was just to hang out with each other and with friends and just be free again. We would just walk down the street and stop for a coffee or a glass of wine or go on a hike and not think about it, just do it. We were much like our old selves. We enjoyed just sleeping in, you forget what that’s like. I was tired when we got back; working and kids I thought. We got back from America in September and then about three weeks later we went to visit some friends in Bendigo, we visit them several times a year. There was a bike ride 20 to 30km for charity and my friend Kath and I decided we’d do it. Nick and my friends husband would mind the children, that was a Sunday, I was a little bit puffed on the bike ride but I hadn’t exercised in about a month and I was feeling fine. I got back to Ocean Grove Sunday night and woke up Monday not feeling 100 per cent so I stayed home from work- I had a bit of a cough and a temperature in my mind I just thought I had a flu. That night I had a bit of pain when I took a deep breath and I thought this feels a bit like something more, maybe pneumonia so I went to the GP the next day. He said you probably have pneumonia here’s some antibiotics but let’s take an x-ray just to be sure. I remember saying to him specifically are you sure that’s not over kill, he’s like let’s just do it so I went and got an x-ray. I didn’t think anything else of it and then I got a phone call from the doctor’s surgery to come in tomorrow morning, they said we’ve got your results. I know pneumonia is serious but not that serious I thought I’d have to take it easy for a while. I pushed it to the back of my head it was dinner time and I was getting the kids ready, my sister happened to be around the next day so the four of us went to the doctors, the two kids, Meg and I. We’d gone to the park Nick was working from home that day the kids were getting a bit cranky, I thought it’d be a quick doctor’s appointment so I said to Meg why don’t you just stay in the car because I didn’t want them terrorising the doctors. I went in and I thought it was a bit strange as soon as I walked in the receptionist said walk straight in.
And I thought oh ok and I sat down and he just looked at me and I could just tell, he had this look in his eyes and he said to me I’m just going to come out and say it. I said what? He said the results show that you could have cancer and I said what? It was another language. I said what do you mean I said I’ve got pneumonia and he said you do but there’s abnormal results. There’s a mass in your chest and he said, “here do you want to see it,” and I said sure and he just showed me the x-ray- it wasn’t making sense. I couldn’t process it at all and I thought he might’ve even had a tear in his eye, he was really upset he’s my regular doctor I see him all the time. The kids were in the car and I just thought I can’t face the children. I thought I’m going to die, that’s the first thing I thought I burst into tears and I said I need Nick and the doctor said is he at home and I said yes. I was trying to dial his number and I couldn’t luckily he had Nick’s number in my notes so he called him and I said you’ve got to come down and he didn’t even ask he just said ok and he came and got there five or ten minutes later. He walked in and I just collapsed in his arms. I don’t remember much of what happened after that because it wasn’t confirmed at that point. I had to go have further tests so I said to Nick I can’t face the children, I walked out of the doctor’s surgery and drove home the long way and he went to the car and said to my sister it’s not good news can you take the kids to Melbourne. She just came here and just randomly put things in bags and drove to Melbourne. Nick didn’t tell her that much he didn’t want to upset her I didn’t think anything at that point I wasn’t thinking and then I came home after they’d left. I told mum, I rung her up and I think she broke down at work then she drove straight here. She got here an hour and a half later, the rest of that night was a blur. I had to go and get a CT scan the next day and then they rushed the results through. At that point they said it could’ve been a lymphoma but they didn’t know, it could be anything and even with the CT they said we can’t rule out lung cancer or a secondary metastasised mass from a primary cancer. It’s a weird feeling after the CT results my GP told me those results as well, he’s very upfront with everything he said to me you actually want it to be a lymphoma. I said I don’t want it to be anything and he said yeah but it is something so you want it to be lymphoma, you don’t want lung cancer. In my head, I kind of started to accept it was a lymphoma and was starting to think a bit more logically about it. It took another two weeks before I knew for sure, I had to go see a lung specialist and he couldn’t get a biopsy so I had to go see a surgeon. I had surgery to get a biopsy, the surgeon came and saw me the next day he couldn’t tell me what it was until the pathology results came in- that was going to take another day- but he looked at me and he said everything went well. He said I got a good sample of some lymph nodes and the way he said that, to me, I knew that the mass was most likely a lymph mass so it was lymphoma. I was kind of happy with that news, it wasn’t an official diagnosis but if it was lymph tissue it means a lymphoma but if it’s an abnormal mass it’s another type of cancer.
At this point Nick is still thinking it could be something else it could be non-cancerous or any number of things. He wasn’t prepared to accept cancer and then three days later the results came in. For some reason, I didn’t want to go in and get the results I wanted to call up and get them over the phone, I remember my surgeon he was a very upfront guy as well he said I’ve got some good news for you and I said yeah what is it and he said you’ve got lymphoma. I said thanks, I was happy with that news I went and told Nick I said the results have just come through I’ve got lymphoma and he broke down. The day I found out we’d planned to go to see one of our favourite bands we’d seen fifteen years earlier. The concert was that night I was going with one of my aunts and three sisters. We’d all got tickets and we were all going together, Nick said we’re going. I said what do you mean and he said we’re going so we went off to Myer Music bowl. I’d told mum about an hour before and I told my sisters at the concert that I had lymphoma, it was such a weird night and I was still recovering from surgery. I was on some pretty strong pain killers and I remember Nick went and got a few beers and I said get me a beer, what’s it going to do, give me cancer? And everyone just cracked up laughing, I had a beer and I was off my face after one. I probably shouldn’t have had it but I was like whatever- it was a weird night. The next thing was trying to work out how far advanced it was, that took another two weeks. They don’t know but estimated six to twelve months, that two weeks was the worst two weeks of the entire time because my logical brain knowing I had lymphoma had stopped and my worrying brain had taken over. I didn’t google anything. I didn’t want to do that because with any type of cancer out there there’s survival rates but to me if I saw a survival rate that’s the percentage I’m going to see my kids go to school. I don’t want to know that number, I don’t want to know if I’ve got a fifty per cent chance of seeing my kids in grade two, I don’t want to know any numbers.
I got really down for two weeks before I found the staging out I just though I’m going to die my kids are going to grow up without me and I wasn’t working. I just couldn’t work I was home by myself most the time and I would just call Nick up in tears the smallest thing would set me off I’d look at a photo and I’d burst into tears. I know with lymphoma I wasn’t going to die in three months but I couldn’t think logically so I was a horrible mess.
I had a pet scan and then I found out it was early stage then I had an appointment with a haematologist, mum and Nick came with me in the meeting. He had a happy demeanour and said you’ve got Hodgkin’s lymphoma, you can cure Hodgkin’s, as soon as he said that I was like oh my God. He said you have early stage I’ve got a plan to treat it and were going to try and get rid of it from that point on I’ve been able to stay pretty positive. They came up with a treatment plan, it was mid-December by the time everything had happened, it took a while to get an appointment and then I said when should we start chemo and he said we can start now. I asked if there was any chance we could start after Christmas, he said it’s slow growing, nothing’s going to happen, go have a normal Christmas with your family; I started chemo on December 27. The first time I walked into Andrew Love it was like this other world I didn’t know existed you walk in and it’s pretty horrible, it’s not a nice place to be really. You look around and see everyone sick and you know you have to be there, it’s just not pleasant. After being there a few times and talking to people I felt really lucky because so many other people are worse off than me, so many cancers out there are not as treatable as mine- in the cancer world, I’m lucky. I had two cycles of really intense chemo where I’d spend three days in a row at Andrew Love getting infused with drugs and come home feeling absolutely terrible. For the first week because it was in December, the kids were in Melbourne with my mum, it was just Nick and I at home- I couldn’t really do anything. The kids came back and then I started to lose my hair, it was coming out in chunks and I thought what am I going to do? I went to my hairdresser and said just shave it off and two of my sisters saved their hair off and my other sister cut her hair short; all three of them came with me and we all got it done at the same time. I was worried about what the kids would say and Jessie said oh mummy you’ve cut your hair can I cut my hair too? She wanted to get it shaved. Jess knows something’s going on, we’ve told her that my blood is unwell. We chose those words because she knew all about blood, I told her about malaria a long time ago and she knows blood’s in your body. A good friend said choose a word that’s not sick because they know the word sick, I didn’t want them to associate what I have with being sick. So, mummy’s bloods unwell, she asks me every few days about it. She asks really hard questions like what if my bloods unwell? Why does this medicine make you so unwell? When are you going to get better?
I don’t throw up after chemo I just feel really horrible and I’m just in bed so they just see me in bed. Jess knows that I’m often tired and I have no energy and she’s just beginning to accept that as normal. It’s hard to accept I don’t have energy to do anything with them most of the time if they’re not in day care I can’t be at home a whole day with them. There’s only so much T.V I can you can give them and I can’t run around after them.
I snap at them sometimes and Jess will tell me to calm down she’s the adult sometimes. I’ve had a lot of help but you just feel so guilty, I don’t sit down on the floor and play with them anymore. Sometimes I can’t even drive, we’re stuck at home. The most I can really do is watch T.V with them or draw with them; some days I’m better but I’m still nowhere near where I was.
I have a calendar up next to the oven I’m crossing out the days I have left, I found out a couple of weeks ago that the cancer is now gone so I just have two more months of chemo to get rid of anything that’s residual to prevent relapse. It was really strange when I found that out, mum and Nick were in the appointment with me again- they had tears in their eyes. They were so happy but I wasn’t, I don’t know if I’m not accepting it until the end, maybe because I have two more months of crap to get through. I’m grateful, so grateful but to me it’s just something buried in the back of my mind that I don’t know.
All along I’ve never been sick from the cancer I’ve been sick from the chemo. Chemo is hell I’ve still got another two months to go but at least its only two months. I can see the positive side of it but I’m probably struggling the most mentally now I think because right now I don’t feel like I’m any part of the person I was a few months ago. I don’t have my work, I don’t have my health, I can’t even go for a walk.
I just feel like everything’s taken away and I’m just struggling with that I haven’t been angry just really down. I have an aim next year to go in a run, I use to run I just haven’t done it for a while. People still complain about normal things to me and sometimes I like to hear about it because its normal life, you get used to it. Not everyone can be aware of what I’m going through that’s fine. Most people say let me know if I can do anything but your bound in guilt so if they said how can I help or I’m going to drop this over or I’m going to pick up your kids and do this. Even things like people have sent me a book or magazines in the mail tiny things that have made such a big difference to my mental health. There’s still flowers around, it’s amazing. Nick’s been amazingly supportive but he doesn’t totally get it of course he’ll keep telling me to stay positive which is a normal thing for people to say but if people are telling you that every single day, sometimes I don’t want to be positive. I want to be able to tell someone that I feel like shit but I feel like I can’t tell people how I’m really feeling.
I guess if I could give people advice who have someone they love that’s sick, if they’re telling you how they feel just sympathise with that. Don’t try to tell them how to feel about it; people say be positive and be strong but maybe for one hour a day you don’t want to be strong. Someone said it’s going to take six months after treatment to get back to where you were. I’m planning on just returning to work very slowly, I won’t be going back four days a week. This has changed me I think it will be a different normal. I already do appreciate things more, I know it’s a bit cliché but I hold my kids a little tighter, I appreciate little things. We’re going to go on a holiday, I care less about the work side of things I want to go back to work I love it but I’m not going to work four days a week and sacrifice family things for that. Priorities do change and I think I’m never going to take my health for granted again that’s always going to be in the back of my head.