Alex

So that was a horrendous operation. I had everything removed in my pelvic region excluding my lymph nodes. I’m very lucky I got to keep them. Cancer was even on my bowel and scraped off my bowel so it was pretty horrendous. I have a huge scar. It is gigantic. It’s like an old-school hysterectomy, like, old school all the way down my stomach, all the way down to my pelvis and the recovery from that surgery was the most horrible thing I’ve endured until chemo. [laughs] It was so painful.

The stomach muscles just being – I was quite fit and healthy before that, like the night before my first surgery I was doing, you know, sit-ups and yoga in the lounge room, and then I just couldn’t move or walk. I stayed in hospital for five days until I was sent home and I was given one month to recover before chemo started which is very cruel because after a radical hysterectomy, you need at least six weeks before you start doing things. That’s what they call mine, a radical hysterectomy, because everything is taken out. I don’t have a cervix anymore either – that freaked me out when the doctor told me that. But I guess that’s good because it means the cancer, you know, is all gone. So the first time we talked about menopause was in the meetings leading up to this very rushed surgery and I didn’t care about menopause at all. It was the lowest concern on my list. But the surgeons and the oncologists were quite insistent about it being something I needed to think about. They wanted me to think about you know, what hormone replacement therapy I was going to do and the side effects I was going to experience straight after surgery.

You do have at our age, some silly people saying things like, “Well, at least you won’t get your period anymore” and that is heartbreaking because I would have my period every single day if I had a choice to still be fertile [laughing]. So that’s pretty mean. And weird things, like at our age, we’re not in our 50s, we’re not expecting menopause. So I had all these boxes of tampons and pads and stuff and I just looked at them, like, “What am I going to do?” I gave them away to my sister. You’re not prepared, and it’s very unnatural at our age to be feeling infertile.

I ended up finding a Canadian site called Stupid Cancer or Cancer is Stupid and that was the best because it was just a forum of young people. Things like, “How soon can you date after you have had cancer?” [laughing] It was a legitimate question I had. “How do you post on Facebook that you’ve died?” “What are your funeral wishes for social media?” These are actually things that we need to think about that 80-year-olds don’t. [ laughing]

What else did I want to know? I was interested in people’s stories about how they started families. So I’ve started following a lot of family sites about surrogacy, adoption and fostering. These things became interesting to me. Work, bills, because we’re all young, we’re building up our thing. Living with parents, it was nice to read some things about other people who had to move home. It’s very upsetting when you’re starting your life and you’ve got a great house in a great area you love and then you have to move back with your parents because you’re sick. I just wish I could have read more experiences about young girls with menopause because it’s embarrassing when you’re the only person in your group.

The fact that I wouldn’t be able to have children was up there with wanting to survive [cancer] and I thought, ‘If I don’t – If I can’t have kids, I don’t want to survive. I would actually rather have died from cancer than be alive now dealing with the fact that I’m a woman who feels I was born to have a child and can never have one.’ Now I have a counsel- a psychologist at the hospital and we’ve discussed that. I understand it might sound a bit harsh to people but for me that was my meaning for life and my purpose and goal that I was working towards to. So now we’re now we’re trying to make some different goals. For example, I’m looking at fostering and perhaps surrogacy down the line. (…) So, I had a relationship with a psychologist before this but I actually decided to choose to go and meet the one at the oncology department because she meets women like me. And she’s great because she’s able to tell me that I’m not the only one feeling these things and I leave feeling far less isolated and far less hard done by, you know, less sorry for myself. Not better, I don’t feel happier or better but just… I’m not the only one and she’s able to help me know that my feelings are common amongst other women.

So I am under the guidance of my oncologist and GP. She is guiding me through calcium supplements and Vitamin D supplements to prevent osteoporosis – oh, not prevent – they said it’s guaranteed I will get osteoporosis so I’m prolonging [sic] that by taking those supplements and also I’m on a pretty full-on exercise regime because – what’s it called? Impact exercise actually helps your bones, to again prolong [sic] that whatever, the weakness of your bones coming through. So I see an exercise physiologist who’s in oncology and I do walking every day and yoga all the time. I’m going to start netball when I’m a little bit better and boxing is going to be the plan then for some high-impact stuff to help my bones. … Apparently there’s really good research for the more exercise you do, the stronger your bones will be. …

And what about cardiovascular health? Did anyone talk about that?

Yeah, my naturopath and GP discussed with me that I have to be really careful with calcium supplements because on a long-term basis, apparently there’s a bit of research that says it can also affect your arteries and stuff. So it’s a bit of a balancing game and I’m just going to be quite monitored with my bone density. So I’ve done a bone density test now to see where I started. Obviously that’s fine because I’m 32. So we’ll be checking that and my overall fitness. They just kept saying fitness, like I have to keep exercising which I’m happy to do because it also helps emotionally as well, so that’s good.

The fact that I wouldn’t be able to have children was up there with wanting to survive and I thought, “If I don’t – If I can’t have kids, I don’t want to survive. I would actually rather have died from cancer than be alive now dealing with the fact that I’m a woman who feels I was born to have a child and can never have one.” Now I have a psychologist at the hospital and we’ve discussed that. I understand it might sound a bit harsh to people but for me that was my meaning for life and my purpose and goal that I was working towards to. So now we’re now we’re trying to make some different goals. For example, I’m looking at fostering and perhaps surrogacy down the line.

I can’t really tell you why, but just ever since I’ve been young I’ve been passionate about children. I’ve loved being around young children. I became an early childhood specialist so I just love spending time, being a nurturing, you know, nurturing mothering kind of person is my personality. And I was particularly interested in sort of the biology of seeing genetics worked out and, you know, similarities and things so that’s why adoption and things weren’t particularly interesting to me before. So I guess it was just a part of me for a very long time and everyone has things that they think are their goals and their meaning and for me, that was sort of my purpose.

So with cancer and early menopause, it’s a bit of an existential crisis, only because you’re like, “What am I here on earth to do if not to reproduce?” and I’m sure other women hate that sentence. But for me, yeah, to nurture a child and grow another person was pretty cool, a pretty cool plan. But I’m a teacher so I still get to do a lot of nurturing and teaching which is nice. I actually became a teacher when I found out I had polycystic ovarian syndrome very early on because I thought that if I actually couldn’t have kids one day, I’d like to still be in an environment where I get to show that nurturing side of myself. So sadly, that plan has actually worked out well. [laughs]

They said, “Well, we might save, you know, if we could save ovarian tissue…”, then I would have been able to have my children at some other stage in another woman’s body. But it was pretty cruel that just as I was beginning that process, I not only lost one ovary, I lost the entire reproductive system. So it was very cruel and I think I’ll probably still deal with the grief of that for the rest of my life I think, yeah. I have sort of said before that I’m comforted at times of my loss and grief that I was trying to achieve that goal and that does bring me comfort.

However, the IVF people are really cool. So if anyone is going through early menopause, go to an IVF clinic. They are unbelievable because they’re not scared of anything.

To me, it’s just like crazy what they can do with IVF and I’m shocked and I’m thinking, “How can you conceive children like this?” But they do it every day. So when I went in with my cancer information that I would have no remaining things, the IVF specialist was unbelievable and she was an oncologist one, so a cancer – it’s called a fertility preservation person that you see. And she just said, “Okay. What have we got? What have we got to work with? Have you got siblings? Have you got blah-blah-blah, sister, brother?” and I have a younger sister who is also carrying my genetic material and a brother who’s carrying my, you know, DNA as well. So she was like, “Right. We have so many options.” She was like, “You can…” because I’m bisexual as well so if I found a female partner, we could use my brother’s semen which would represent my genetics and carry on my family line with my partner. Or I could use a surrogate and get my sister’s eggs donated and then my friend, my male friend that I was already going to do it with and to me, my mind was blown. But this lovely woman was just like, “Yeah. Yeah. Do-able. Do-able. Do-able.” The options they have are so, so cool and she explained to me that just because I have a child with my eggs doesn’t mean that they’re going to be musical or sporty or whatever. She said that if you use your brother’s or sister’s, the chances are just so random with genetics that you’ll still see a lot of things that you want. So that’s pretty cool and she was rapt as well with options. They’re really good at giving you possibilities at those places, yeah.

I guess menopause happening was really hard to talk about with my friends because all my friends are having babies this year and I can’t judge them for that or begrudge them because I was planning to have a baby this year as well. So it’s a very tricky time because they are all just quite happy that I survived my first round of cancer and not too concerned with the fact that I won’t be able to have kids now, which for me is, is a pretty big issue.

And weird things, like at our age, you know, we’re not in our 50s, we’re not expecting menopause. So I had all these boxes of tampons and pads and stuff and I just looked at them, like, “What am I going to do?” I gave them away to my sister. You know, it’s just… You’re not prepared and it’s very unnatural at our age to be feeling unfertile. I just wish I could have read more experiences about young girls with menopause because it’s embarrassing when you’re the only person in your group. So my funniest story is I was out with some friends on a rare moment when I was well and I said, “Oh my gosh. Is it getting really hot in here?” and everyone just looked at me and went, “No.” It was my first like, ‘I’m doing what my mum does, you know, I’m an old person going through menopause’ and now I’m really careful. I don’t ever ask that question out loud, “Is it hot in here?” Because it’s embarrassing because I know it’s probably just me. [laughing]

So you said that you feel like you’ve got more in common with your mum and your aunties and older women but do you talk to them much about it?

I will joke around with my auntie and my mum and, you know, if they say something about a hot flush or staying up at night, I like that I can joke and join in. So I’ll say, “Oh yeah, you know, my last hot flush was blah-blah-blah…” [laughing] So I do find a bit of the humour in the fact that I can share common physical experiences with them. But I don’t talk seriously with them because they can’t understand, they’ve all had their kids and stuff so I don’t know if they would understand the loss. The problem is at this age, the loss is so great, the grief and the loss that come with early menopause is really big and it’s at the same time that all your friends are having families. So it’s a bit hard to process that grief and loss when it’s continually around and I don’t feel that talking to older people who have had children is really helpful for that because they can’t understand.