Yen-Yi

[You said] the fertility preservation specialist, they didn’t really talk about it either because their focus was more on whether or not you wanted to have IVF?

Yeah, but she did I think a little, maybe a year after my having chemotherapy …. So I’m guessing probably it might have even been November 2014 when she then did a blood test for me to measure, I think something about follicle and so some other hormones apparently that they can test in my blood levels. So we did a blood test and then when I showed my oncologist and then she said yes, to a certain extent, sometimes that could be because of the chemo, but also she said, “You’re on tamoxifen, sometimes tamoxifen does also lower that set of hormones.” So she says it’s a little bit of both and no-one had a clear indication, what long-term changes or what happens if I came off tamoxifen. And then once when I started on the ovarian suppression and the exemestane, we knew that the periods won’t come back for a while because that was why they wanted to put on the ovarian suppression.

Has anyone spoken to you about the likelihood of whether or not your menstrual cycle will return?

I think – I haven’t really put it on top of my agenda to discuss it, but from discussions with the fertility specialist whom I still see once a year and the oncologist, I think it’s still an unknown … If I have this treatment for five years, so 10 years and at the five year mark, yeah, will I be closer to the natural menopausal age or not? We don’t know.

It seems that from what you’ve said that your health professionals have been relatively clear with you that this is more ovarian suppression rather than early menopause.

Yeah, I think everyone is thinking that that’s what it is, but I guess from what I can sense and feel it’s almost still a grey area in terms of no-one quite knows how my body is going to take to all this. But I guess, if everything aligns up to what they assume it to be, then this is a temporary situation.

My mum was very concerned. She said, “How come you still haven’t got your menstrual cycle back?” I say, “I’m okay. It’s not too bad, you know.” Because I used to have fairly bad menstrual cycles, like about a day or two, I would be in pain, and then I’d have to take painkillers, and then I have this whole wheat bag, and then I feel really lousy, and then I had these food cravings. So I don’t miss all of that; physically, I don’t miss any of that.

The only thing I was very conscious about, at one point I kept saying, “I don’t know, but I think I’m getting these side burns. I look like Wolverine!” and then one of the registrars said at the hospital - she was so cute - because she say, “We think you look great with short hair. Why don’t you keep short hair?” And I said, “I don’t know. I need the long hair,” and then she said, “Why?” and I said, “I need to hide these side burns,” and then she said – I’m not a very girly-girl but you know - “Oh,” she said, “Just go to the spa and they can wax that off.”

I was like, ‘Oh, is that what it is?’ That’s when I realised, ‘Oh lots of girls wax this.’ And so now if I have like an important, like friends’ weddings, then I just book myself an appointment and wax the side of the face, wax the upper lip, fix the eyebrows and then that’s it. Otherwise, all the other times I couldn’t really care. It’s just that when I have that close proximity, then I just feel very judged, and I was like, ‘Okay, you know, I just need to fix myself up,’ and then, I think in a way that is like my armour.

Probably I’m just overthinking it. Probably no one even notices, but that’s my armour and I think, okay, if I fix this one thing. I’m sure if you ask my best friends if they even care whether I started growing a moustache, they probably wouldn’t hold that against me, they wouldn’t judge me any different. They might get concerned if I didn’t notice that, or you know, but they’re not going to love me any less – and that’s why I always think, ‘Oh, why am I trying to spend all this time trying to not be marginalised because I am facing all these symptoms of menopause?’ But I say maybe if it makes my life that one little bit better at work then I’ll just do it.

And so that’s something that has followed the menopause? It wasn’t like that before?

Or I didn’t notice [ laughing]. No, no. I think it definitely has increased a little bit. And another friend did say too, and I said, “I think it’s that withholding of oestrogen, right?” and she said, “Probably.”

The only thing that really was an issue when it started happening were the hot flushes that happen during my sleep, which kind of either woke me up or at one point I wasn’t sure what was happening, but I was waking up almost quite regularly every hour or two hours. (…) – it just kept continuing for a few months. I can’t even remember when it was, but it was distressing because I kept saying, ‘What’s going on? I’m not getting a full night’s sleep, I’m not going to be able to function tomorrow,’ and, you know, it was just strange. And I just thought it is because I was linking so many things. I said, “okay, this like obviously it’s not going to help me with my memory.” It’s already, you know, I’m already so stretched at trying to function as normally as I can at work and I just feel that this was kind of depleting what was in my tank. [laughing].

But there was, I guess, there is no clear pattern in terms of what happens and that was really distressing. So it distressed me in that I was waking at all times of the night and I just couldn’t sleep back and then my memory, you know, some days seemed better, my multi-tasking kind of took a while to come back. And so, I was kind of in this loop where I just couldn’t tell what was the cause, what was the effect, what were the things that I could intervene or, you know, what changes could I make because it was just a very, you know – it was just a mess and I just couldn’t pull it apart and figure out which were the ways to attack it and things like that.

Yeah, so that was probably the biggest. And so because of that then I started spiraling to sort of feel really lousy and then I couldn’t figure out whether I was being lousy - I was feeling lousy because I couldn’t sleep? I couldn’t sleep well and, you know, I wasn’t functioning as well as I could or was it because physiologically my ovaries were just acting up? And then, every now and then I’ll go back, when I see my medical oncologist and then she said, “Well, it is really what we’re doing to you through the ovarian suppression.” I said, “Are you sure? You know, if you tell me that, that’s fine. You know I just don’t want to have an underlying mental health issue that I’m not addressing and, you know, and things like that.” She said, “No, it’s really that.”

And - but in the last six months, I think, we really started having more discussions about my mental health and whether I wanted to take another medication which is EFEXOR [venlafaxine] … just help stabilise things. And I was pushing it back because … I said, “Oh, another thing to take and another stigma,” and she looked at me and she said, “No mental health is not” – I said “I feel it.”

And I finally, I think in February this year, I really hit rock bottom and that’s when I said this is, you know, I just couldn’t get out of it every day waking up, it was just heaviness on me. The colours are grey and more grey, like even through the darkest days of cancer treatment, I know I could still find things to be cheerful about; I could still smile, I could still laugh. You know, I mean there were days when like I don’t look forward to it, but you know through the day you know there was – there will be something that could just kind of turn my focus and attention.

But yeah and the last like month, about two months I think from Feb to April this year, where it was just – it was just hard, it was just heavy and then and I said - then they say, you know, it’s really not worth struggling so much and then when I look at the signs of depression I was starting to tick all that and I said [laughing]. And so I said, “okay, you know, and ever since they gave me that is really literally changed my life around.” I say when I wake up I don’t have this heaviness. It’s not the first thing that I feel when I wake up and, yeah, I can function. I mean even though, you know, I still face a lot of stressful situations, but you know I can still smile, I can still laugh, you know, there’s a bit of black humour, there’s you know, I can be cynical, be anything except flat and grey.

I see a GP, but I don’t see her regularly. I kind of see her more often for like when I need referrals or to just have like a very, very serious chat, or someone to help me co-ordinate like, or help me think through things. But I don’t sort of book in to see her very regularly, but she has written for me to have the extended primary care program, so I then get referrals for exercise sessions at a sort of discounted rate. She also writes me an extended mental health care program, so that’s why I get to see my counsellor once a month.

Yeah, so probably those are my touch points, and then because I’m back at the hospital every six months to see either the surgeon or the medical oncologist, but I’m back every month to get my goserelin, and then along the way there will be corridor chats and things like that, and our nurses are really lovely. They’re all always only just an email away. So I am very well connected into that system, … and then there are also other organisations and then there’s the Cancer Council Hotline and things like that.

So, whilst I really, really value my GP and she’s really, really good to me, we had an understanding that she knows that I am part of the whole system and things like that and so, she knows that I’m well looked after in terms of this, and then for all other things I go back to her.

And did you go to a menopause clinic at all?

I did go for a session at BreaCan [now Counterpart] where someone came from [women’s health clinic] and she gave a talk on menopause and she did say, you know, for anyone here if you have continued and really bad menopausal symptoms, speak to your nurse co-ordinator and you can get a referral into this menopausal clinic. Because I was so up and down I was like, you know, I couldn’t figure out - and I think even that talk somehow it was tailored on menopause and all, but it was quite generic in that it was really tailored towards, how do you live, how do you survive and I think the big thing for me was, how do I work whilst having menopausal symptoms and that was largely not addressed in that talk.

And I think again, it’s because it’s not the natural life cycle and, you know, I can understand that you, you know, you do a talk and 80% of the crowd is wanting this, you know, that's what your talk is going to be tailored for. … And I mean, even if you look through like the BCNA, the stories that people tell, a lot of them, I mean, some are probably in their fifties onwards and they really have started to make those lifestyle changes and things like that. There are some younger women I can see. I’ve seen that. But I think, there’s not enough of us. It’s like what, one in eight, versus you know, one in two or three or something, or in the older age group. So there is not enough of us I think to tip it over to kind of say there is a lot of unmet needs at this, you know, for this age bracket.

A while ago I was part of a group that was reviewing a website on fertility preservation. … And that website was really all about fertility preservation, you know, what are the options if you wanted to have a baby before [cancer treatment], during, after and things like that. And then I said that, you know, how do we define fertility preservation? Like are we really talking about fertility only in terms of fertility in a context of having children? Because now that I’ve gone through what I’ve gone through, I see fertility also in the context of, ‘I don’t want children, but it doesn’t mean that I want to have the whole menopause.’ I want to know fertility preservation in the context of what can I do to not have you know. Because I see the two closely linked when, you know, you’re sort of past that fertility age is when menopause hits and so we were quite clear and then we just put in some bits [for if] you weren’t wanting to talk about having children, but you wanted to talk about fertility as a whole and what the implications of losing fertility. … So I guess I now view fertility preservation not just about child bearing capacity, but as in my normal ovarian function.

So shortly after I was diagnosed with breast cancer and the nurses sort of gave me a checklist of things, or people I needed to see, and included in there was a fertility specialist. And I said, having children wasn’t really something that I seriously considered and can we just skip that. I just wanted to move along.

My concern was just getting through the whole cancer treatment and they said, “Ah, no, this is part of protocol so you have to go.” I said, “Okay, reluctantly I will go,” and then when I went, but I thought, it was really just going to be this conversation centred about all that and the fertility specialist start talking to me about, yeah, the fertility options. And then she also kind of said, “Have they told you about chemotherapy and the impact that does to your ovaries and the whole menstrual cycle and things like?” I said yes, and we briefly talked about. And so she said, “Oh, happy to still see you after that if you have any other questions.” I said, “Okay, that’s a great thing.”

And so I walked away and then I emailed her back and told her, “I have decided that no, the fertility preservation’s not for me, but I’m still keen to take up your suggestion of coming back to see you after chemotherapy and talking about any other effects that, you know, that are bothering me.”

It’s quite funny, I was whingeing to [the psychologist] and then she said, “I know, but think about it, you can wear white again.” I said, “I don’t care about that. I just don’t want my life to feel like it’s ending.” She said, “What are you talking about?” and then she said, “Lots of people have menopause early on in their lives. Their lives don’t end just that way.” [laughing]. … and I was saying, “Okay.” Because I think as a society we just over-emphasise so much on the whole youth and vitality and, you know, your abilities … that the wider society sees you in contributing.

I found that I was really short-tempered with mum … Or, you know, I just feel that she doesn’t cut me any slack and because I think we’re always pushing each other’s buttons, so there’s a lot of screaming and shouting, a lot more than normal. I mean we’re very short-tempered, very short-fused, but it blows over quite quickly. But some of this just was very prolonged. And for a while I felt really resentful and then I just felt like there was this barrier and I just couldn’t reach her and I just couldn’t get her to understand what was going through my head. I just felt like, ‘You’ve gone through menopause, you haven’t gone through cancer, but you’ve gone through menopause, I thought you would understand me better’ And yeah, so and then my sister had to be the go-between a lot of times.

Reach out, and reach out, and reach out. I just think that it’s not perfect, but no matter what it is, we are so well-equipped [in Australia]… So I guess sometimes when people tell me, “Oh, you know, the system’s so broken, or this doesn’t work, or that doesn’t work,” and I was thinking, ‘We’re about 90% there, you know. Yes, the 10% in anything is always the hardest to attain and to reach, because you know, you’re attaining for the - the last 10% you know.’

But I’m thinking of the story this vicar was telling me when he say he used to do a lot of ministry work in [country name], and they were teaching the little kids and they were talking about vets, and then the kids said, “What? You have doctors for animals? We don’t even have doctors for us.” And then that’s when I realised that, you know, there’s so much to be grateful for where we are, so you know, I would just say – use the resources, reach out.