Pregnancy, ADHD, BRCA1 and a double mastectomy

So Jaimee! Where are you in your motherhood journey so far?

I am 23 and a half weeks pregnant at the moment, with my first baby!

Congratulations mumma! And how do you feel in general?

At the moment, the last few weeks I have been feeling really good and I think it has been since about 20 weeks. I feel a little more connected to the pregnancy; there’s been a lot more kicking and movement. I think my body is starting to look more pregnant, which is better than just feeling bloated and tired. I think I am at a really good point with it mentally and physically and I have a lot more energy too.

So first trimester then, was that a bit crap? or were you not feeling mentally okay?

The first trimester, I mean for me, compared to a lot of people I hear about, mine was incredible; I mean I didn’t have any morning sickness at all. I was exhausted, really exhausted. I would go to bed at about 3pm and cry at lunchtime most days because I was just shattered. So I was very, very tired and emotional. I would cry everyday, which definitely was not normal for me, but I didn’t have any weird food cravings or aversions, I just felt like I was on this rollercoaster, but I was completely and utterly exhausted. I thought this was all going to end after first trimester, but it just went on up until like 20 weeks.

Yeah! It’s like that and you hear people say “oh yeah just wait until the first trimester finishes and then you will great again” but you don’t and then you just get a bit hard on yourself, because you know you’re well and truly into your second trimester and you think “why am I still feeling so shit?” I am glad that you are feeling better though.

Yeah! Well I mean when I was officially in the second trimester, like you were saying, I Just kept thinking that everything was going to get better, so then I got thinking “oh okay, maybe there is something wrong here” and I started googling perinatal depression and stuff like that, because I was thinking clearly I am meant to be in the incredible second trimester, where you feel better than ever and everything is back to normal, except you’re still pregnant. So it definitely made me doubt that process. And now I am just dreading 4 weeks from now where I am in the third trimester and then it is all going to collapse again.

I think every pregnancy is SO different and there are so many people that are so quick to say “just you wait” and “don’t you worry, it get’s worse” or “it get’s better” and it is so easy to buy into the idea of perfection, because you have 10 women that you respect, telling you it’s all sunshine and rainbows from this point, but you have one friend that is like “well it actually wasn’t too crash hot for me either”. For now though, just enjoy it while it is good, because you never know, you could have a fantastic third trimester!

I mean hopefully, that would help with Uni!

So right now you are studying?

Yes I am in my uni holiday’s still, so when I found out I was pregnant; it was in the last few weeks of the semester and going into exams. I have been on holidays since November and I go back at the start of March in 2-3 weeks.

You are wonder woman, I have no idea how you can study and be in early pregnancy at the same time!

In some ways I think it is a lot easier. There is flexibility and I can stay at home in my pajamas and there are more flexible hours. The biggest thing for me with all of this is the thought of not being on my ADHD medication and studying and that is terrifying because I don’t want to fail going into my fourth year of study doing my honours year. It is part time though, so it will take me 2 years.

It could also be good for your career as a psychologist, having gone through the rough emotions through pregnancy; you can come from a better place of understanding in practice.

Well yeah, there is this quote and it is what smart people say and that is that any struggle or anything that is difficult is like 100% good for your life. That is obviously not a direct quote from a book actually that was quite terrible.

That’s fantastic; I’m putting it in the blog.

So how long have you known about your ADHD? Did you know there was something wrong for you to feel like you had ADHD?

I think I got diagnosed 2 years ago. I didn’t really know. ADHD is very rarely diagnosed in women and especially adult women. I’m a combination of inattentive and hyperactive. I didn’t think there was anything wrong because I think you only know the brain that you have and the only reason I found out was because one of my best friends got diagnosed and I related so much to what she was thinking and I also read a book about it and it all just made sense. So I started going through the process. I had just gone through a bunch of surgeries so I went to my GP and I had to them twice to be referred to a psychiatrist and clinical psychologist to finally be diagnosed. It is a very stigmatised diagnosis, so the process was tedious. So I had to take medication and see ADHD coaches and see my ADD clinical psychologist and psychiatrist and then I was medicated for a couple of years, so that with the therapy has just been incredible. I was able to live the way that I had always been trying to live, but just couldn’t figure it out and I didn’t know why. And now I am pregnant and no longer on my medication.

So how do you feel now not being on your medication?

Well it has been a horrible experience, because the pregnancy was unplanned, so there was no part of me that was putting in place structure and I didn’t have any plans to be like “oh I’m going to get pregnant and then get off my medication” and I have all these things in place. It was all a surprise and currently there is no evidence to show that the medication harms the baby, but it’s more of a risk versus reward scenario. Obviously in a best-case scenario, it is good to be off the medication. I think me coming off my medication has contributed to my rollercoaster of emotions, I was also moving house and things were all up in the air, so everything just felt really unstable. So I decided I should probably go back on my medication, because I think the risk is outweighing any sort of benefit I am getting from not being on my medication. I am all for happy mum, happy baby. I have had a total shit fight with my psychiatrist since trying to get back on my meds and now she is no longer treating me. Every one on my medical team is behind me, like my GP and clinical psych, but my psychiatrist is very conservative and will not prescribe it to me. So it has been a very long process of me trying to justify why I think I should be on my medication and trying to fight to look after myself in pregnancy, but there is so much pressure still. I was surprised, but also not surprised because it seems like she is taking on a very old school approach, especially from a mum herself. I think it is a good thing, because I know there are psychiatrists out there in Perth that put the mothers mental health first and understand that prescribing these medications have a benefit for the mother, but obviously if you can avoid giving it, then avoid it. So I can move on now from that relationship with her.

That’s so awful! Like you said, it is so old school to not put the mothers mental health first. I mean, if you don’t look after the mum when the baby is happily thriving inside her, how is she going to cope when the baby is outside of the womb and you need to 100% care for this being and keep it alive. I’m really sorry you had to go through all of that.

well it is all part of the experience I guess and she came at it from a point of me not wanting to feel guilty once the baby was born and she was more than happy to check me over after the baby was born to see if I had postnatal depression. It was just a very old school view of “you’ll be fine, deal with it and I’ll see you after when you have depression” basically. So I thought “okay cool, I will just put all the stress on my unborn baby and probably have issues that lead to the end of my relationship and be totally unstable, because that’s a great way to bring a baby into this world”

Now you said earlier about previous surgeries, did you want to touch base on that? What were your previous surgeries?

Yeah, so about 3 and a half years ago I found out that I carried the BRCA1 mutation gene, which is also known as the Angelina Jolie gene. The BRCA1 gene gives me a higher risk of breast cancer and ovarian cancer. So for me that meant I had a 70-80% risk of getting breast cancer and 45% risk of getting ovarian cancer and that varies from family to family depending on their history, depending on the age of people who have had the cancer. So that’s my personal risk that I found out. It is a 50/50 chance of the BRCA1 gene being hereditary.

And how does genetics look for you in terms of cancer?

So in my family, we don’t know much outside of our immediate family, but my aunty [mum’s sister] got diagnosed with breast cancer at 28 and died at 31. My mum got diagnosed with ovarian cancer at 52 and has gone on a lot of trial drugs and four years later is still going. There’s a lot of other cancer in my family, but we aren’t sure if that is because of the lifestyle and they weren’t able to get tested because it was so long ago. My Opa died of lung cancer at 56 and he was a heavy smoker and my uncle died of bowel or colon cancer at 56.

Considering you have the BRCA1 gene, what did that mean for you in terms of treatment?

So there’s a lot of different choices out there and there are a lot of different decisions that people make. So a lot of people decide not to even get the test in the first place. Basically with my situation they told me I had a 50/50 percent chance of having the gene and I could either monitor that and have mammograms or ultrasounds every 6 months, but basically monitoring at an earlier age than most woman would get scans to try and catch in early or the option was to have a risk reducing mastectomy, which is what I chose. So that’s where they remove all of your breast tissue and it doesn’t mean 100% that you won’t get breast cancer, but for me it was a thing I had to so I didn’t have to get a tonne of x-rays and ultrasounds and tests and the anxiety in the lead up to get scans every 6 months. I was 26 at the time, but considering my aunty was 28 when she first got diagnosed with breast cancer, it was within the recommended time period to undergo the surgery. For my ovaries, the advice is to have a double oophorectomy (ovary removal) after I turn 35, which is a much less extreme version of having a full hysterectomy.

Are you going to go ahead with that?

Ah yes? It’s definitely something I will have to consider closer to the time, but in general and there are no other options available that I would prefer. For me, the oophorectomy holds a much bigger weight than the mastectomy. The mastectomy side effects are basically physical, unless you get reconstructive surgery or get implants, which is what I did, but I am very numb and I am unable to breastfeed. With an oophorectomy, you go into early menopause at 35, so for me it has a much bigger impact on my overall body health. Its actually a far bigger decision I have to make, but at this stage, if there is no other option than to do it at 35, then that’s obviously the route I will take.

Well lucky you’re currently pregnant so you don’t need to worry about starting a family.

Yeah! It is actually good for that and starting a family is a really good way to extend the process. So the best guess currently as to when ovarian cancer develops, is based on your ovulation, so the less you ovulate, the less chance there is of developing ovarian cancer, so if you’re on the pill or pregnant, so I’m not actually ovulating for 9 months, so that actually is very good at extending the likelihood that I will get ovarian cancer.

So you have had the mastectomy, so like you said, you can’t breast feed. I know you have already probably heard people say things already, because there is a stigma around not breastfeeding and there is such an emphasis on “breast is best” when actually “fed is best”. How do you feel about not being able to breastfeed?

Its been really interesting because it was something a few years when I had my mastectomy that I was an outcome. I mean I was very sure in the fact that I wasn’t sure if I wanted kids and Id rather have this surgery and not breast feed than have kids and get breast cancer, you even hear of some people getting breast cancer while they’re pregnant. It wasn’t something I had really given much thought about at the time. Getting pregnant, it definitely, especially in the first few months, was something that affected me a lot more. Partly because I was worried about the connection and the bond I would have with the baby that you get from breastfeeding and partly because of nutrition. I definitely agree and I know science agrees 100% that breast milk is the most incredible thing that adapts and changes, like if your baby is sick, your breast milk changes, which is incredible and you could never manufacture anything as good as break milk, so in a perfect world, that would be incredible. I think that was just a process of wanting the option to do that. In my logical brain I am very aware that some people choose to not breast feed and a lot of people cant breastfeed even if they haven’t had a mastectomy and we live in a country that has very good regulations for making formula and it’s great and all the babies that drink formula are absolutely and completely fine and there’s no part of me that thinks that my baby is going to be malnourished and I know also that just because I’m not breast feeding, absolutely does not mean I wont be able to bond with my baby. You know I have also spoken to a lot of women who have started breastfeeding and didn’t like it and found themselves justifying themselves, just like I had to with y medication, on something that should just be a choice, so in a way I think, maybe I would have been one of those mums that didn’t like it or couldn’t breast feed and then I would be trying to justify myself. So for me I don’t think I am worried, because in a lot of ways, I am lucky and it could be easier for me and you know if someone does come up to me and ask why I’m not breastfeeding, I can just tell them I have had a double mastectomy. In reality though, I don’t need an excuse to not breastfeed my child. It’s absolutely no ones business. And in terms of connection, it’s absurd to think I won’t feel a bond, I mean the baby is literally growing in my belly.

Now how are you feeling towards birth?

I don’t know if this is my ADHD, but I am so excited for birth! We are using a birth suite, which is set up like a home birth and we took hypnobirthing classes last night, so I am very excited, even though I haven’t given birth before and don’t know what I am in for. It’s just all about setting up my environment and being as relaxed as we can and it is about the partner too.

Yes! Bring on birth! Which of course there are a lot of people out there that are anxious to give birth and think, “how the hell is this thing going to come out of me?”

I know, I just think about how amazing women are and how amazing their bodies are and I just can’t wait to be one of those women as well and I mean whatever happens in the meantime I can’t control but I am focusing on my mindset and relationship and going in with my partner.

Well I think you have this in the bag, you’re so strong and you have gone through so much, even in just the last 3 and half years so you have already proved how strong you can be and this just seems like a little blip in the grand scheme of things.

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