Impact of early menopause on work, study and finances

So the main symptoms that I experienced sort of immediately or almost immediately, that did impact me: I had a bit of the hot flashes, the hot flushes, which were mostly just annoying. They were manageable and not as intense as some people have complained about. But it was difficult, particularly at work when everyone’s freezing and you’re sort of boiling [laughing]. But even if it was for short periods of time. Just again, just uncomfortable and I thought, ‘Oh I’ll just sort of, you know, power through this and it would be all right,’ which was true. Just uncomfortable

It was a very small group, so there was only about three or four of us and the others were aware of what I had, you know, just done and we were quite a close group that worked together. So I would have no problems saying, “Oh my God, I am absolutely boiling!” But it was really because it was a huge building that we shared with many offices, so we had no control over windows, temperatures, anything like that.

So it was really just me saying, “Is everyone else boiling hot?” To which they would say, “No, it’s just you!” [laughing]. And I’d just take off every layer of clothing as I possibly could and still be decent in the office. So that was nice, at least to have that supportive environment, and you can make a joke about it or whatever.

But it did last into a new office as well, with a different group of people that weren’t aware of what I had done and why that was happening. So that was a little bit more challenging. Well, there wasn’t anything that could really be done, except for through the winter a couple of them were absolutely freezing and had little mini heaters. And so I would ask, “Oh, have you had that on long enough? Can we turn that off now because it’s uncomfortable for the rest of us?” That sort of thing. But I think that would happen to lots of people in lots of offices anywhere where people feel the temperatures differently. So I didn’t, you know, go any further than that really, and just being in basically a t-shirt in the middle of the winter while everybody else had gloves on.

That impact of memory stuff I think has definitely had an impact on my work in that I have to prepare for meetings in advance a lot more. I feel like I can’t wing stuff like I used to and maybe it’s more apparent to me than to other people, but I sense that, you know. I was doing a webinar last week, a webcast and whereas previously I could have just had, like, five dot points up there and spoken for half an hour, now I almost have to write out a script.

Whether I have to refer to it or not is another thing but I feel like if I don’t have it there I might forget something and I don’t feel confident. I’m very particular about choice of words in written materials and speaking and I feel a really strong sense that I might forget the exact words that I’d like to use. I’ve worked in government for years and choice of words is really important in some contexts and I just feel like I struggle to find words sometimes, you know, or you’ll use a word that you think ‘That’s not the one I wanted to use,’ you know. I’ve always been terrible with directions. That hasn’t improved [laughing] or gotten worse but – just general I think memory is the big thing. Yeah. That’s been a big change.

When I was first diagnosed, I was doing café work, which I still continued to work at that café every now and then for a while. And my boss there, who was my boss at the start, has become one of my best friends now and she was amazing for me. She would, if she didn’t think I looked well she would send me home. If I felt like I needed to work, she would tell me to come in and work.

In the way of work, I’ve had a lot of help and a lot of support. Probably not so much now because I look okay. People forget what I’ve been through and I feel like sometimes this is the hardest, been the hardest part for me because these hot flushes and sweating has been so bad that I just have to stop and I have to walk out and that’s really hard to do if you’re in a job. Yeah. So it’s definitely been a lot tougher in the last year when I look a lot more healthy and I’ve finished sort of the physical side of treatment. People just kind of forget what you’ve gone through and what you’re still going through to this day. But it’s just I don’t know if I could work full time. Most people hope that I would and, you know, I need to get the money coming back in but it’s just too hard.

And that’s because of all the side effects from early menopause.

Yep. It’s just the side effects. It’s just my body is sore, my knees are aching. I don’t sleep as much any more because I wake up absolutely drenched a few times a night and the hot flushes get so bad that I can’t concentrate. I can’t do anything. I kind of have to walk out of work and just wait until I cool down and then I can walk back in again, and I look like I’ve run a marathon, so it’s, yeah, [laughter] not fun.

When I had breast cancer and I had chemotherapy, given that I was having HERCEPTIN [trastuzumab] for another, you know, 12 months after that, I didn’t feel I’d be able to go back to work full time. And I worked as a manager within the health care, like, an NGO. And so I had a chat with my manager who said, “You can’t come back to your job part time so you either need to make a decision to come back full time or not come back at all.”

And so then, as I was finishing my chemotherapy treatment, so by that stage I think it’d had about, like, six months off, to then be told I couldn’t go back to my job unless I was prepared to work full time, which at that stage I didn’t have the capacity to, was horrible. It was a real kick in the teeth. And to work for a health care organisation who said that. So that’s when I decided to start my own business. So I’ve now had my own business for 10 years.

I work in the hospitality industry, and I worked in a particularly busy restaurant at that time, frantically busy, the possibility of taking breaks was simply not there, and financially I was not able to take any sort of time off work. And I did simply work through it. And of course everyone works through menopause. However my work was exceedingly physical, physically, not only exceedingly physical, but exceedingly physically stressful, just the physical output that I had to do every day. And it was enormously detrimental to my health.

And there were days that were just terrible. The only break I ever remember taking is, I was at work one day, and I was actually having a period, it was one of the last – it might have even been the last, I don’t actually remember, but it was certainly one of the last. And it was extremely heavy and painful. And I actually just had to go upstairs and kind of double over and lie down for half an hour. But I couldn’t take the shift off or go home or whatever, so that’s what I did, and it was hard.

And also no one really knew what, what was going on and you can’t say at work, you know, “Oh, I’m sort of in the middle of menopause.” It just wasn’t on [laughing]. So yeah, I just worked through it. But it was enormously detrimental to my health to do that, I wouldn’t advise it to anyone.

The best thing I ever did for my health going through menopause and beyond is to slow everything right down. I changed to a much less stressful job within the industry. I worked way fewer hours, and that’s had an enormous financial impact, but my health was more important. So that’s what I’ve done.

And even once I had shifted to the next job which was sort of much easier going, still physical but easier going [laughing], I went through a period of terrible hot flushing for quite some time. And I would just go and stand in the cool room, like, 20 times a day. And I was forever throwing clothes on and off, yeah. And I think also it’s, you know, women don’t really talk about the effects of menopause terribly much. Of course people say, “Oh yes, I’m hot flushing,” or, “Yes, I don’t sleep.” But constant hot flushing has a sort of terrible effect on the body, and it’s really exhausting. It’s just really wearing to raise temperature, drop temperature, raise temperature, drop temperature – at one point I must have been doing it 30 times a day, when it was really bad.

It’s definitely affected my work, and it’s also affected the ability to increase my work, my workload.

Fatigue?

Fatigue, yes, and because the hot flushes were so embarrassing I would just think ‘Well, at least I’m only here one day a week,’ or ‘At least I’ve only got another hour to go.’ Whereas if I had to do that all day, every day, I think it would be very emotionally draining, yeah, very hard.

And it was really embarrassing, really embarrassing. Because you feel it like in your stomach, like, “Oh, I’m getting hot!” Then it creeps all the way up, and into your face, and right up to the top of your head, and then I would start to sweat. So then it would all like just come out of me, and I’d be bright red, so embarrassing.

And because I work in retail, I would have customers, and I guess we have a large client base that are older women, and I just kept thinking when I was having these hot flushes, ‘If they knew what I was going through, these are women who would understand. Like they would get why I look like this, because no one else does, like not in my age group.’

Where you asked any questions at work about it, like about what was happening?

No, not asked, but I would get looks. Like I told my boss, and she was very comforting and it wasn’t awkward at all, where I thought it would be. Then the occasional customer would complain about their menopause, and I would say, “Oh, I know how you feel!” [laughing]

There are moments when I’m having a hot flush, especially in the past and especially in winter. And I have to admit, then I am self-conscious. For example, if I take off this cardigan, I am wearing what is essentially a summer blouse with relatively short sleeves, light cotton and if this is all that I’m comfortable in I feel self-conscious walking around a classroom.

And some students don’t just keep their cardigans on, they keep their outdoor jackets on – as if they’re going to make a break for it – and I walk around, or I don’t, and I force myself to stay in the cardigan just because I feel a little bit conspicuous, because it is a little bit weird like when you see people, it’s freezing cold and like they’re in short skirts with no leggings or something and you think, ‘Oooh, you must be cold!’

Do you still feel a bit awkward like that, like you will keep your jumper on?

I’d say that was about a classroom of students. If it were my friends or the lunch room or something like that, I wouldn’t feel self-conscious and if it even entered my mind I would think, ‘But my needs come first, I don’t care, I just don’t care.’ But I think with students I do. Maybe because we don’t know each other.

I’m lucky with work that it hasn’t. Because I know most people, if you’re just a normal employee then taking the amount of sick leave and whatever could make things difficult. But being a family business that has really been a lifesaver I think because not only has it kept, you know, I’ve got the financial security of knowing that I’m not going to lose my job. It also has kept me engaged in something other than what’s going on personally and I can…

I’m one of these people, too, that if I’ve had a surgery and the doctor says to take six weeks off work I’m like, ‘God, what am I going to do for six weeks? I’ll go stir crazy.’ It’s like, ’I can’t sit there and watch Netflix for six weeks. I’d just go mad.’ [laughing] So it’s been really good to be able to, you know, even go in. And there’s even [laughing] a little bed in the back of the [laughing] back of the office so I can go in and, you know, potter around a little bit and [laughing] do a little bit and then, “Oh, I’m tired. I’m going to have a lie down.” [laughing] And that’s – yeah, I couldn’t ask for a better situation to be in in terms of work.

So when you would change the combination and the dose and whatever, like how long would you have to try it until they would reassess?

Oh, often I would struggle to get to the three month mark. And we would try, I would try and do things so it was in uni breaks, because that would give me a good six weeks. But if sometime… like there was at least one time where things went pear shaped and I became quite unwell, and I did end up… I think I did go back to uni doing just one subject, which I’m so glad I did that and didn’t defer, because it was my way of just keeping my foot in the door. I didn’t throw in the rag. I just kept my foot in the door.

I was studying only part-time, but I treated it like… I made uni my hub, including campus ministry, all that. Made it my hub and so I might be there five days a week, but on one day I’d have campus ministry and gym, and study. Another day I might have classes and study. Another day I might have my part-time job that was on campus with one of the departments. So I might have a five hour shift with them and maybe a bit of study or a bit of gym. So I had to be structured but flexible, was my approach. And when you’re on a roll you just go with it [laughing].

And there were times my boss, not very understanding. [laughing] It was like, “Oh, you need a medical certificate. You need…” I’m like, “Yeah, I know that. Okay. I’m not faking it. It’s like, I’m going through.” And it’s hard. You’re not going to tell your boss, “I’m going through menopause.” Because it just, you don’t want to. It’s just embarrassing and it’s, like, what are you supposed to say? I spoke to some of the female, you know, members of staff at my work. But I didn’t want to tell my male boss I’m going through menopause. I’m 37 or 38, whatever I was at the time.

And I think there was a lot of issues there because I was in and out of hospital and going to see doctors and having a lot of sick days. My boss just wasn’t very understanding at all. And it caused a lot of tension. And I think, you know, he even suggested that I wasn’t really committed to the work and committed to the job. I’m, like, “Yes, I am. But I’m kind of going through something here.” I didn’t know how to say that’s what was happening.

I’m pretty sure one of, like, the – my, you know, he’s the secretary, the assistant secretary was a woman. I’d spoken to her about it and she was very understanding and I’m pretty sure she must have spoken to him because he was asking kind of pointed questions about, “Oh, so…” What did he say one day? Oh, he knew I’d had breast cancer and he said, “Oh, so you must have had chemotherapy then.” And I said, “No.” And I think because they’ve got a medical background they know that if you’ve had chemotherapy it’s a high chance that you go through premature menopause. But my premature menopause had nothing to do with my breast cancer because I never had chemotherapy. It was because of the ovarian issues, I think.

So how do you kind of bring that up in conversation with your boss? [laughing] But it occurred to me later that’s why he was asking me if I’d had chemo, obviously. It caused a lot of tension and I had to leave that job in the end because it was just, it was so awful. It was so awful. Having to deal with all of the, you know, menopause symptoms or perimenopause or whatever it was at the time. And dealing with my job, which was a really high pressure job too, and travelling all over the state, driving for hours and hours and having to listen to everyone else’s issues. [laughing] It takes it out of you after a while and I just had to leave that job. I didn’t have another job to go to and it was a really awful time.

I just study in the TAFE, study English, because you know if you want to study something you have to pass the Level 4, I’m just nearly finish Level 4.

Then you decided to stop when you found out that you were sick?

Yes, because I have to surgery and the chemo, I can’t go back to study. If you study you have a lot of pressure, you have reading and writing every day, lot of pressure. So I don’t want to have pressure. If I have pressure maybe I got sick again. [laughing]

Before you found out you had the cancer, what was your plan about work here?

I want to find a job about, like have some certificate, can use it, easy find some job. I like the job, I like go to work, I don’t want to stay at home. Yes, very disappointing because I like work. I like go to work every day like in China, I do it nearly 20 years. I like it, the feeling. So I still want to work.

For us personally it’s had a negative financial impact. My partner was working prior to my cancer diagnosis and during. But quite early on in the piece he’s actually had to leave work because he needed to become the main carer of our two children during the times that I was really sick. I guess the uncertainty of how long this is going to go on for and also whether this is going to be something we have to deal with again in the future has played a big part in our lives in terms of planning for the future. He hasn’t gone back to work since this whole thing began because he had to look after our kids. And so that’s obviously had a big impact on our finances.

I was initially, prior to my diagnosis, I was planning on going back into the workforce when my son started school. And then we had our daughter instead [laughing]. And again once she, we felt she was old enough I was going to go back to work, which hasn’t happened because of all this.

I know I’m not capable at the moment of going back to these physical jobs and so I don’t know what I’ll be looking for when I try to get back into the workforce. And I’m going to have to find someone understanding who realises that I’m going to have appointments always. [laughing] There’s always going to be that factored into it and I’ve got to work around that and so there’s a lot of uncertainty in that respect. And my partner has also experienced increased pain with the arthritis on his knees and that so that impacts on the way he can get back into the workforce and what he can look for and what is available to him.

So we’ve got a lot of obstacles we have to work around [laughing] but I guess it’s just what you have to do. We both want to be back in the workforce because we need the money [laughing] and I want that for a sense of normalcy as well. That’s always, every step of the way, I’ve been like, “I can’t wait just to go back to work and to try and get some normalcy back into my life.” Because the cancer diagnosis completely hijacked this. So I’m really looking forward to that but I just – I see a lot of obstacles and there’s a lot of uncertainty about how we’re going to make this work and how we’re going to go about that so.

But, yeah, financially it’s had a huge impact. [laughing] We both get Centrelink payments. He’s – I was – I was on the parenting payment when I had my daughter and my partner is now receiving that because he is listed as the main carer of the children now. And I’m just on Newstart I think it’s called. But, yeah, obviously it’s not an ideal situation. [laughing]

What about financial issues associated with, I guess, both of them, cancer and early menopause, was there anything that was really difficult or that you had to adjust?

Sometimes when I saw the doctor it was just faster to see him in his clinic in the rooms in [suburb] sort of thing, so we sometimes paid. The public hospital that he’s attached to is not nearby, it’s not one of the ones in town and I live closer to town. So, I have to take a train out far away and sometimes when it’s like 5 o’clock at the end of the day, and picking up our daughter or just getting home on time for dinner with her, if I had to take a cab I have elected to.

ZOLADEX [goserelin] has its own cost – well, prescription… I mean, to be fair the Australian government, it has paid tonnes and tonnes for my health but it has a prescription fee that you don’t claim back from somewhere. So I have that every month and then the doctor that I go to is not entirely bulk billed, so I get half back. But between that plus the AROMASIN [exemestane], that’s $105 a month. So, there’s that.

To be fair though, you would be disingenuous to say that that takes up a real dent in our income. Like, it just is what it is and that’s okay for us. One day when we’re not paying it, that’ll be lovely too. But I can see how this whole thing would have taken a massive draw for working class women or women who are not in the paid economy, one income households with a very average middle income, this would’ve been a real setback. But of all the ways that this was a setback, it financially wasn’t what it could have been.