Ever heard of Choriocarcinoma? (Neither has spell check!)
Well, I wish that I could say that I had never heard of Choriocarcinoma, but I found out what this was when I was diagnosed with it - four months after giving birth to my second son, Finn.
I remember I was sitting in my car on the side of the road, after having been to numerous appointments with specialists trying to figure out what was going on, when I received the phone call from my gynaecologist who had the news.
“So, it’s good news and bad news”, I remember her saying.
At this stage, after a month of feeling very unwell (morning sickness, feeling lumps in my stomach, pain and an increasing stomach size to the point of looking 30 weeks pregnant again– which was physically not possible after just having had a 10 pound baby and not wanting my downstairs parts to be touched as yet), I was fearing the worst. I had already heard the words ‘oncologists’ being thrown around in appointments, but I was also thinking I couldn’t possibly have some type of cancer. I’d had recent scans throughout the pregnancy, surely their couldn’t be anything sinister inside me. Plus, I had 2 young boys to raise! I was ready to know what I was facing – The gynaecologist who I had only met for the first time 4 days prior, who had researched and phoned me almost daily to have me go to further appointments or testing, had figured out what was going on.
“You have what is called Choriocarcinoma”.
“I have what?” I thought.
Working in the health field, I didn’t really like the sound of anything with carcinoma on the end, but I had never heard of this before. The gynaecologist continued to inform me that it was a very rare tumour which develops in the placental tissue in the uterus, often resulting from a molar pregnancy (unsuccessful fertilisation of the egg resulting in abnormal cell growth). Usually these are non-viable pregnancies, but I was lucky that I managed to have a healthy baby boy before it started to develop. The good news was that it is highly treatable with chemotherapy, the bad news was that I had to go through a very aggressive chemotherapy regime to beat this thing.
I felt relief, I knew what I had and what I was facing, and I felt ready to take this on.
I rang my husband, Simon, straight away, and what probably sounded ridiculous to him at the time was how happy I was. Yeah, I had a tumour, but I just need some chemotherapy and it’d be all good. Perhaps I was a little naive of what was to come, but I am proud that I got through most of my treatment with this attitude. Sure there was some days where I was in tears, exhausted beyond your wildest imagination and still just barely existing, but on the whole I got through it with a positive attitude, and never thought that there would be any outcome but positive. I didn’t have the capacity in my life to think otherwise.
I remember getting off the phone to Simon and driving straight around to my parents, where mum was with my two boys and I was happy with the news. I informed her of the outcome and whilst she was also relieved because I was, I could see she was concerned about the chemotherapy. But, typical mum went straight into planning, “well I’ll just be taking 6 months off work to look after you and the boys”. God bless that woman!
Things happened pretty quickly after that, the gynaecologist had me booked into The Women’s in Melbourne in two days’ time to discuss the situation and start chemo on the day, if that was what we decided to do. I had to have MRI’s to check that it hadn’t spread to my brain or lungs, as it is very aggressive and often spreads quickly. My gynaecologist was beyond amazing throughout this entire time - constantly phoning me, going into radiology and looking up my scans as soon as they were done, to let me know it hadn’t spread so I didn’t have time to worry.
Then came the relentless trips to Melbourne each week. On my initial consultation they basically informed me what was going on, and that I had a decision to make – they could either remove my uterus, which would reduce the amount of chemotherapy I would need, or they could just treat it with chemotherapy and hope that it worked. Tough choice to make in one hour, when you’ve just had a baby and your not 100% sure if your done having children yet. Simon and I sat in the atrium discussing the options and, we figured if we were not 100% sure, maybe I should hold onto my uterus just in case.
They had me hooked up within an hour to start chemo – which was scary, but also probably for the best as I didn’t have time to worry about it. Unfortunately, I wasn’t able to have my chemotherapy in Bendigo at this stage, as they didn’t have the capacity to offer overnight chemotherapy. So, for the first 2 months, I had to travel the two hours to Melbourne each week for treatment. Every second week I would have to stay in overnight, which meant I got to the hospital around 10am on a Tuesday and didn’t get discharged until around 4pm on a Wednesday - sometimes later if I needed a blood transfusion (thank-you to everyone that donates blood, you saved me!). The following week, I would travel down and back in the day for a 3 hour chemo stint, and this two week cycle continued for 4 months. By about the two month mark, I was able to have the short stint chemo in Bendigo, which was great as it meant that I only had to travel to Melbourne once a fortnight.
So how was chemo?
I’ve worked with a lot of cancer patients who were undergoing treatments, so I was aware of what the main side effects would be but personally experiencing it was a different matter. The side effects are so different from person to person, one person’s body will cope with it differently to another, so predicting what you might experience is hard until you are actually having the treatment. And whilst I would consider myself very lucky in that I wasn’t nauseous or vomiting (which was my biggest concern), I just can’t even explain the type of exhaustion that I experienced. It probably hit me the worst at the very start, after the first week where I thought I was going along ok and kept trying to keep up my normal mum and social life until it hit me like a ton of bricks. I was in tears, I don’t know how I even put one foot in front of the other, and I remember rocking up to mum and dads house with the boys in tears, asking mum to have the boys for me for the night so I could sleep. I always felt like I needed to sleep for days, but I think even if I did I still wouldn’t have felt any better. The exhaustion was the worst side effect for me.
I lost my hair, which I wasn’t particularly worried about, the only thing that concerned me about this was that it would freak out my boys, particularly my 2 year old Angus. I imagined I’d rock home with no hair, and they would think that I was some strange teenage boy. The way I coped with this was to have one of my friends shave my hair off in front of my Angus, which he thought was great, playing with all of my hair on the floor and he couldn’t have cared less. It was exactly what I needed. Even Finn, my 4 month old, just gave me a big smile when I picked him up from his sleep minus my hair.
There are definite positives to losing your hair – firstly you’re too exhausted to be bothered with doing your hair anyway, so at least I didn’t have to worry about that. Secondly, a bald head is amazing in summer, it keeps you so much cooler. And the feeling, when you put your head in the fridge on a hot day to get something out? Yes, weird I know, but it’s amazing! Thirdly, it allowed me to rock a pastel pink bobbed wig and I loved it!!! I’d always wanted that colour hair, but wasn’t prepared for the upkeep, so what better way to deal with this shit than rock out some colourful wig.
Some other side effects were struggling to sleep even though I was ridiculously tired, decreased immunity so having to be careful where you go and what you do, becoming really pale due to reduced haemoglobin (basically either requiring a fake tan to hide it or blood transfusions) and losing a lot of muscle mass. Given my profession is an Exercise Physiologist, I should have coped with this last point a little better than I did. But, we’re often good at giving advice but not necessarily taking it, and I really didn’t do much in regards to exercise at all. I was that exhausted being a mum of 2 small boys, that I just didn’t have the energy. If I was to change anything that would be it, I would make time to exercise throughout, no matter how exhausted I felt. Just do it because in the end, you’re going to feel so much better (and from all the research coming out lately, it’s actually going to make your outcome and your response to chemo a lot better too).
One other effect which I didn’t really consider, is that sometimes you can have reactions to medications, and chemo is just the same. I had a nasty reaction to one of the chemo drugs after 3 cycles, which I found strange because I’d dealt with it fine the first two times. I just remember sitting in the chair and Mum was with me this visit (thank goodness as she is a nurse, and I didn’t freak her out too much). I remember sitting up and saying, “I don’t feel well, I think I’m going to be sick”, and that was it, I passed out. I vaguely remember the sound of the intercom calling a ‘Code Blue’ in the day oncology room, and I remember thinking, “bullshit, there’s no Code Blue happening here thank you very much”. When I opened my eyes with a big gasp of air, there were 50 million people sitting around me. One of my favourite nurses was right beside me, she’d hit me with some steroids and I recovered fine, just a bit of a scare at the time. They just had to slightly change my chemo drugs after this.
And one final, pretty disgusting thing that happened, which I’m still not even sure if I should include… But, it might help anyone else who might be about to go through the same thing, and no specialist ever told me this could happen, so I didn’t know what the hell was going on.
About 2-3 weeks into my chemo, the drugs were obviously having a good effect on killing the tumour, and I was about to realise just how good! I had just come out of a stint in hospital in Bendigo, I had a temp and my immune system was rock bottom, so they were feeding me with antibiotics for this. I think I’d been discharged home for all of 2 hours when I started to experience cramps, which continued and were really uncomfortable. I stated to time them and they were regularly 3 minutes apart, I thought ‘this is ridiculous, this like I’m in labour’. So, in we went again to emergency and Simon checked me in at the desk whilst I was pacing outside trying to breath through these cramps/contractions, when I just had to go to the toilet.
In the ED toilet, I delivered a horrendous 20cm tumour.
I had no idea what it was or what was going on, I hit the emergency button and when the nurse finally came in I remember saying to her, “is that my uterus? Did I just deliver my uterus?”. She said, “no dear, if that was your uterus, you’d be dead”. Ok, well I wasn’t dead, just in a bit of shock. Looking back, I realise that the chemo was working so well, a big part of the tumour had broken off and I suppose my body had to get rid of it somehow.
Probably the only reason that I managed to get through this as well as I did and as positively as I did, was because of my kids and my amazing support system. It’s challenges like this that make you realise how lucky you are to have family and friends like you do, that go above and beyond what I could have ever imagined. From the moment I started to tell people what was going on, I felt like I had this amazing support. I was getting messages left right and centre to offer any assistance and check in with how I was feeling. I am not a person to ask for help, I worry about people having their own busy lives to deal with and not wanting to put anyone out, but in this case I had friends that ignored that, knowing the person that I am and who just did things without asking.
I could always count on Simon too, who although was probably struggling with the situation himself, whilst still working full time to bring in an income. He would know when I needed a little pep talk to lift me up and keep me going.
I had a range of people cooking meals for me on various occasions, two amazing friends Jane and Marsha in particular, who did this on a weekly basis without fail. I can’t ever thank them enough, because it may seem like something simple, but come the end of the day the last thing I could be bothered worrying about was making tea.
My beautiful cousin Ryan in Melbourne who would come and sit with me at night, every fortnight when I was stuck in the hospital room without my kids. He would entertain me, bring me tea so I didn’t have to east hospital food and we would watch whatever trash TV we could find and just chat. He helped to keep my mind off being there, and this time would have been so ridiculously lonely without his support.
My in-laws, who checked in regularly, made amazing food for us and would offer assistance whenever I required it.
My beyond amazing parents. I know I would expect nothing less from them, but still their support was above and beyond. Taking time off work, they would take me to and from Melbourne, look after the boys for me when I had overnights stays, or on the 1 or 2 nights post chemo when I was struggling the most. They would go and buy me food so I didn’t have to eat hospital food and, basically, just love and care for me beyond my wildest imagination.
There was also a program that the Social Worker from the Women’s was able to get for me. I was able to access an in-home nanny for the boys, for a few days a week, so that I could still be home with them and around them. But, if I needed to go and have a sleep for a couple of hours here and there, or rest on the couch, she would play and interact with the boys. She would make their lunches, and basically give me a little break when I needed it. We were so blessed to have Paige come and help us out, not only was she amazing with the boys, caring for them like they were her own and building their already creative imaginations, but she was great for me to have around the house too, just for a chat. She certainly became part of our family over those four months, and the boys still talk about her regularly to this day.
Lastly, the nurses on the oncology wards at the Women’s and in Bendigo, were amazing. It is one place that you would feel like you would never want to be in, but they made it fun. They loved a chat and I never really felt that I didn’t want to go, because of the support they gave me throughout that time.
Whilst I wanted to limit the impact this situation would have on the kids, there is no doubt that it had some impact. I never had the boys come in to any chemotherapy treatments, I didn’t want them to see this side of it. While for some people, that might be what they prefer, it just wasn’t what I wanted in this case. I didn’t want them to see me as being ‘sick’, hooked up to machines and hospitalised.
At home, I felt like I was there in body for that four months of treatment, but I wasn’t mentally and physically there in the capacity that I would have liked to have been. Thanks again to Paige being there as their nanny for a few days a week, I was able to be with them a lot more of the time. The boys did became aware that I would be absent more than I would like to be, with overnight hospital stays and needing more rest than usual, but they handled this situation brilliantly. They were perhaps a little more clingy than usual, but overall they dealt with change like champs, and have built some beautiful bonds with their grandparents from being around them so often. Particularly my youngest Finn with my Dad, which is so beautiful to watch.
So even though I went all of this, which was crap, there’s no doubt I still do feel pretty lucky and this is why.
I’m here, healthy and happy.
I was extremely lucky to have choriocarcinoma, which is highly treatable compared to some difficult cancers with poor outcomes.
I was so thankful that I was the one that was unwell so I was able to control the situation. If I had to deal with one of my children being unwell, I don’t even know how I could cope with that.
It made me be more thankful and put life into perspective
It made me realise I have an amazing bunch of family and friends out there that would do anything for me, I’ve never felt more loved than I did in those six months.
That saying take time to smell the roses – it’s weird but now I marvel at nature. A blue sky filled with clouds has never looked so amazing, the trees stand taller and look greener.
I live in the moment a lot more, still not as much as I would like, but a lot more than I was.
It made me realise being skinny isn’t all it’s cracked up to be! I’d rather be a bit stockier and strong, than skinny and weak. I always thought it would be nice to lose a few kilos, but when I did and lost all my muscle, I felt useless. Weak as a kitten and I couldn’t function as I would like, I would prefer to have a few more kilos and feel strong any day of the week.
It gave me chance to rock out a pink wig.
It gave me a greater appreciation and love for what I enjoyed doing previously but took for granted, like playing with the kids, or playing a game of netball. I remember walking off the netball court after my first practice match back, with this ridiculous smile on my face that I just couldn’t stop. I was so proud of getting back to that point, but also just appreciated how much fun it is to be out there on the court with your teammates.
I actually felt like I was some sort of wonder woman after coming through this, I felt like I could take on the world. I feel stronger mentally and physically for it and I have total belief in myself and what I can do. I am proud of myself.
Choricarcinoma is extremely rare, affecting 1 in 50,000 pregnancies
Symptoms : bleeding, abdominal swelling, anaemia
There is over 90% cure rate for choriocarcinoma
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