Apologies in advance for the length of this one! This post is mainly to help anyone who is on the same (or similar) treatment plan I was on after being diagnosed with Choriocarcinoma. It’s all about the side effects I experienced and the details of my chemotherapy regime.
When I was first admitted, I had the sciatic pain down my right side, from the waist down. As the pain eased with painkillers, I think it showed the extent of the damage. The tumour on my sacrum (spine) had pressed against the sciatic nerve-causing this problem. So I have some numbness/pins and needles in the feet and down the left side of my bum and thigh. So I was put on some nerve related tablets. Then I had to take a concoction of other drugs to balance out the side effects of the chemotherapy (a lot less now though!). So considering I hate taking any tablets, this was a real difference for me. But they all helped and they all did something useful.
Choriocarcinoma is such a rare cancer, and it’s so aggressive. Someone said to us that the treatment is like heavy artillery. It well and truly charges in and destroys everything. Your body doesn’t feel like your body anymore. You’re a bit of a shell of a human for a little while. But it’s temporary, you just have to remember the bigger picture. This short time of hell gives you the rest of your life of happiness. It’s so hard to think like this when you’re in the centre of it though.
My treatment plan was called EP/EMA, plus I had 6 intrathecal treatments.
So one cycle went like this:-
Week 1
Day 1: Intrathecal
Day 2: EP (hooked up for 10 hours approx)
Week 2
Day 1: EMA (hooked up for 36 hours approx)
EP is a shorter treatment and consists of Etoposide and Cisplatin.
Although EP was the shorter treatment - I struggled with this one the most. There was a beautiful lady, Anna, in with me at the same time, she found this one better of the two. This just shows that everyone takes it differently.
Luke was with me one day I was on EP, he said he saw an instant change in me once the Cisplatin was hooked up. Sick bowls were required in everyone’s car after this one!
EMA is a longer treatment and consists of Etoposide, methotrexate and dactinomycin.
INTRATHECAL is an injection into the lower spine, injecting a small amount of methotrexate. This is like a lumbar puncture procedure. A small amount of fluid is drained off (for testing of the HCG level) before the methotrexate is injected.
The purpose of this is to target the cancer in the brain. The fluid they drain off is clear, it runs up the spine, around the brain and then back down the spine.
I had 7 cycles in total which was 14 weeks altogether. My HGC was normal at 8 weeks, then I did 6 weeks consolidation period to make sure all cancer cells had been killed. It’s usually 6-8 weeks consolidation period after your levels are down and remain down. The plan was for me to do 8 weeks, but I was too poorly by the end. I think the words “you’re a broken woman” were used, and the staff said I wasn’t my smiley self anymore. I hate that, it was my goal to be cheery till the end!
The main aim of the chemotherapy for Choriocarcinoma is to get the HCG hormone level back down to below 2, mine was 42,000 when I first was admitted into hospital. The specialists can never tell you how long your treatment will be until that HCG stays at 2 or below. Sometimes it sticks at slightly higher but it’s up to the doctors to determine whether you start your consolidation period.
There were so many side effects from all these different drugs, I can’t say I ever had a normal day during treatment, or even a minute for that matter! It becomes the new normal for a short time. But you just have to continue to be positive that you’re always one step closer to the finish line. It’s harder to think like that when you’re crawling across the bedroom floor to get to the bathroom though. I know now (at the better side of it) it’s easier for me to say, but trust me - it does finish. You’ll get your victory over this. And please don’t read this and feel sorry for me. Right now looking back, this was a chapter of my life that wasn’t planned but I learnt so much from it. Things I needed to learn.
If you’re currently undergoing treatment for Choriocarcinoma then please don’t be overwhelmed by the list of side effects I write, you may not get them like I did and I’m sure the other girls that had it at the same time as me would tell you they experienced it all differently too.
Every week I’d head back to Sheffield and have my bloods taken, then one of the specialists would come and assess me and check my blood pressure etc. They’d have a long list of questions about my health and the side effects I’d experienced the previous week since the last dose of chemo. I didn’t do too bad at the start, I wasn’t suffering with much other than the main ones, but come to the end I had a tiny bit of all the others! It was a bit frustrating but it could have been a lot worse.
I’m so thankful that my treatment was completed in 14 weeks. In beginning they said it could be up to 7 - 12 months! I think I’d have had to have been wheeled in by the end!
I know the specialists ask a lot of questions but it’s good to tell them everything, not only because they have access to the drugs! But because they can share tips and tricks other girls have shared with them. They’re there to help - and they’re so good at it! By the end of my treatment, if I hadn’t talked about my bowels within the first 10 minutes then something was wrong!
Tiredness
I have never experienced tiredness before like I have done in the past 6 months. It’s heartbreaking to hear the kids playing downstairs with Luke and I’m in bed about to go to sleep or too exhausted get up.
With EP, I struggled with this a lot more. Some times I didn’t leave the house all week. If I got dressed it was an achievement, Going out wasn’t even an option. I sat in the car once whilst Luke did a food shop, I thought I had it in me to unpack it and put it away but half way through I felt faint and weak. Then the tears came because I felt useless. Luke was doing everything, all my being wanted to relieve him from something but I couldn’t. At the beginning of my treatment, Averly’s last bottle was around midnight, but come 8pm I was unable to keep my eyes open! Getting up the stairs was a marathon, sometimes I’d crawl up, not even because of the pain but because I didn’t have any energy! All I wanted to do was to be able to stay awake to allow Luke to get an early night and I’d put Averly down! It happened on the odd occasion, then as she got earlier and earlier to bed, it wasn’t as much of a struggle.
Sickness
I could probably say I suffer with mild car sickness if I travelled long journeys or if I was too busy on my phone whilst in the car! But when I started on EP I got the worst sickness. It wasn’t that I was actually vomiting, it was just constantly feeling sick. All day, everyday ...
Everyone who drove me to Sheffield had to have sick bowls in the car just in case. Well I say I never actually vomited - there were a couple of occasions, one being in my friend’s car on the motorway. Thank God she was near a layby and had baby wipes and mints in the car! I have to say, that was near the end of treatment so my body had been pretty hammered at that point. Also my friend is pretty amazing not to freak that I vomited in her car (I’ll also add how I was amazed I got 99.9% of it in the bowl!).
I took constant anti-sickness tablets and if it got really bad I took an even stronger one but that created more problems with the bowels ... now I won’t get too in depth, but I will get onto that subject more in a bit.
Hair-loss
Nothing can ever prepare you for losing your hair. Especially as a woman. It’s a huge factor in your self confidence. I’ve never been massively high maintenance but I still liked doing my hair and make up as much as the next person! But being bald is a whole new thing. You also loose your eyebrows and eyelashes as well as being puffy faced from steroids, so you can’t even do your make up like you normally would. It’s as if chemotherapy wants everyone to know you’re battling cancer and try to make it as difficult as possible to remotely blend.
I think one of the biggest things I worried about was how the children would react. We made sure Wesley was there when we shaved the last bit off so it wasn’t a complete shock to him. I already felt he was a little distant from me, which who could blame him, when I brought a baby home one day then was in hospital not long after for 3 weeks abandoning him (well, not quite but that’s how I felt) and then every week I’d disappear again for a few days. The poor child must have been so confused. To be fair he didn’t mind it, he wanted to shave it for me! Then he just kept rubbing and patting it the rest of the day!
Averly must have been even more confused, one minute I’ve got long hair, then short, then none, and then an assortment of hats and wigs! No wonder she’s so relaxed with strangers, she lives with one!
At first I was so conscious, I wouldn’t let anyone see me without my hat on, thankfully at first it was cooler. But as the temperature increased, I’ve really had to try and relax. I saw a woman in the soft play area with her son who had hair like mine. She looked so beautiful - I wish I had the courage to tell her now as I look back. But why should I worry and sweat in a hat just to create the illusion I’m not bald.
My body has been through a lot. I’ve defeated cancer - that’s more important than worrying if people know that I’m bald or not.
It’s the initial look on people’s faces when they don’t know, or if they have spoken to me on the phone or messaged, then see me for the first time. I think because I tried my best to put on a brave face, they don’t expect to see me looking ‘sick’. Because let’s face it - you see a bald woman you automatically wonder if it’s because of cancer.
Oh also, you loose your nose hair too...I never thought this would be a bother but it made my nose run, constantly! I was a walking mess!
Tinnitus
I did so well to not get tinnitus the whole length of treatment until right at the end. I have a dull ringing in my ears constantly and every now and again it has a wave of a loud ringing. I understand why people struggle so much if they have it quite bad. I often find myself putting the radio or TV on so there’s some constant noise in the background as a distraction. Although it’s not like my house is ever quiet with two kids!
Vision
My vision didn’t alter too much during treatment, but as time went on I found myself struggling to read the TV guide on the screen, and if I ever wore my contact lenses I had quite blurred vision. I ended up wearing two right lenses instead of a right and a left ... which I wouldn’t advise!
Mouth and Throat ulcers
Possibly the most bizarre side effects I’d expect to come with chemotherapy. It happened every other week when I was on methatrexate ... and oh my ... you’d feel those ulcers pop up one by one as the first couple of days passed after that dose of treatment. Certain foods would sting it. And you could barely chew - or swallow! I’d have to keep a tissue in hand to wipe my mouth after every bite because of dribbles! How gross! And a bottle of water to constantly sip. Sometimes I’d just give up because it took too long to try and eat. The worst part was that chocolate stung the most! For some reason a fair few times it turned in to thrush and I had that coldsore feeling come at the corners of my mouth, with a white film coating all on my tongue and all on the insides of my cheeks. Christmas Day it took its toll most when I couldn’t eat my Christmas dinner (even if it was a hospital one!). I’d pray they went within two weeks so when I started that treatment again it was only fresh ulcers and not new ones on top of the old ones.
It was like performing alchemy with dozens of mouthwashes, every type of bonjela and ambersol. I had Blistize for my lips and a special type of toothpaste that wasn’t as minty to stop the stinging and to help with dry mouth. I dread the day of my next dental appointment because it was near impossible to brush your teeth properly! (If my friend is reading this who is a dental assistant she’ll be checking on me now to make sure I’m making up for it!). My advise is - liquid ambersol, Blistize, Vaseline, tissues and bottles of water constantly in your bag! A mini survival guide to mouth ulcers!
Appetite change
I’ve always been a huge foodie. Loved cooking food and eating it! But this really changed my appetite. I didn’t fancy anything other than really boring plain stuff. Things like toast and plain pasta with a tiny bit of cheese. I even went off roast dinners, I can’t actually say I’ve even fancied one since. I even went through a period of not eating much meat. I was living off pure carbs. They say you loose weight on chemo though, but no one told my body! I never even wanted to cook. People brought round home cooked meals and I tried my best to eat something decent when they did.
Hot and Cold Sweats
Because this type of cancer is hormone related, one of the side effects is that your body goes into some sort of post menopausal state ... it’s horrible and I will never under estimate women going through the menopause again. The hot and cold sweats are unreal. They’re a lot better now, and don’t happen as often when we’re out, but in that moment when you go from fine to roasting in a split second it’s horrible.
In the middle of the night I’d be fine temperature wise but wake up dripping in sweat, to the point I’ve had to change my jarmies! So frustrating in the winter when you want to be curled under your duvet but you can’t because your dripping wet!
Skin change
Before starting treatment I use to have quite oily skin. But since this it’s been so dry! My feet went really dry and cracked and I had lots of dry patches on my face and neck. I had to change the products I used to try and keep on top of it. Luke was so amazing (which I keep saying I know!) he use to pray every night whilst putting cream on my feet.
Stretch marks
I was expecting to loose weight when I was on chemo, the exact opposite happened! When I was in Sheffield for the first 3 weeks all I ate was cake and custard. And I’m so sorry to all that cooked and provided us with amazing meals whilst we’ve gone through this whirlwind, they have been so so amazing and we are so grateful, but I’m about to confess ... I hate custard. In fact any classic British dessert for that matter - cake and custard, jelly, rice pudding, and my worst food ever - trifle. I can’t even begin to explain how much custard grosses me out and yet when I was in Sheffield I lived off cake and custard and crumble and custard and anything else with custard for that matter. I don’t even know what made me eat it? Maybe out of politeness when it was handed to me! Or the fact I was in such a daze I didn’t even notice! I got such a huge amount of stretch marks AFTER my treatment?! How annoying.
Anyway, that added to the fact the steroids bloat you, and you are filled with fluid from chemotherapy, I am now the official owner of some pretty impressive stretch marks ....
Pins and needles
This is something that came quite late for me thankfully. I’d always had numbness/sensitivity in my feet, so added pins and needles didn’t matter too much. In my hands, it was when I clapped or patted something. For example when I winded Averly! Or trying to do up buttons or zips. Anything quite fiddly was a bit hard to do and uncomfortable.
Sometimes when I wake up in the morning it feels like my hands are retaining water and are sore if I clench my hands together and if I’ve been sat or laid down for a while my feet can hurt when I stand. But it fades after a few minutes thankfully. This, along with the tinnitus, got worse post treatment. I sometimes get painful pulses through my feet but it goes after a short while. All things that will eventually go though.
Bowels
Now anyone who knows me will know that taking about anything “personal” wasn’t something I did. When I had Wesley I began to be more open to talking about things because, well let’s face it, everyone’s dignity goes out the window after having kids. So what is wrong about talking about a bit of poo!
If I wasn’t open enough after Wesley, then after Averly just tipped me over the edge. I think people are going to be scared to mention anything about it anymore in case I go too graphic!
On that note, brace yourself. Dad if you’re reading this, then skip past to the next bit! And if your sensitive to toilet talk then you skip too!
I’ve never had trouble going to the loo before. I was fortunate enough to have regular bowels. But between the nerve damage and all the drugs I was taking, that was thrown completely out of the window. Because of the numbness from the nerve damage, I began to struggle peeing let alone anything else. I had a catheter for a brief time but then was adamant to get rid of that so forced myself to pee ‘unaided’. On a side note - during IV chemotherapy, you pee LOADS, I think it was because I was hooked up to it for hours at a time. But every time you pee, you have to measure the amount and record it on a chart, and on the methatrexate week it had to be tested each time for the pH level, it was so frustrating at 3am when you had to unplug the IV machine and wheel yourself off to the toilet with the jug and chart in hand!
Anyway - the medley of tablets mixed with the chemo needed to be balanced out with lots of laxido and other laxative tablets to make sure I could still go to the loo. I think I went just over a week before I even needed to go in the beginning. And after 2 kids - I can honestly say, THAT was more painful. I remember sitting there with tears in my eyes and one of the nurses shouting from the other side of the door, saying goodbye as she was off home from her shift! I’ve never been so quick to end a conversation in my life.
It was always a balancing act, chemo made you stop going, so I had a mix of things that started. Then I’d get the sickness from the chemo, so take anti sickness tablets but that would make me stop again ... then throw in the recovery from birth side of things (mums you know!) and you’ve got yourself a party!
Poor Luke, nothing is left to the imagination anymore. I’ve shared every detail with him - the fact he’s still here shows how amazing he is. He’s my golden trophy, priceless and one of my biggest achievements in life! I hope Wesley and Averly know how incredibly blessed they are to have the privileges of calling him dad. Well - I’ll make sure they do.
Insomnia
Prime example of this is that it is 00:59 and I’m still typing instead of snoring like the rest of the house - dog included! There’s no balance or pattern to any of the side effects, well there wasn’t for me. One day I’d be exhausted and crash once the kids were down - sometimes before! Other days it’s 00:59 and you’re still binge watching Friends and writing your blog. (Trying not to do too many spelling and grammar mistakes so your amazing editor won’t kill you! Thank you Michelle - you’re the best!)
Everyone tells you to rest, and you do, because you have to - but you feel so incredibly guilty. Guilty for not being able to play cars with Wesley. Or stay up to give Averly her last night feed. Guilty that you can’t even wash a dish because you can barely stand. But your body is screaming for rest and you have to listen to that. But it doesn’t help when you can’t sleep at night. It’s so frustrating when you long for a good sleep so you might be able to do something the next day. A sleep that isn’t interrupted by a cold sweat either!
Mental health
I never wanted anyone to see me sick. I hated anyone knowing I was being physically defeated at times. If anyone asked how I’m feeling I’d often say “I'm doing ok” because what else could I say? “Oh not great, I sweat like a pig at night and I haven’t been to the toilet for 3 days!” I think the church members would stop asking me! Realistically though, who wants anyone to know that they’re unwell. If anyone saw me looking so poorly I’d hate it. But had no energy to do anything about it. I could barely do my eyebrows at the best of times, let alone when I’ve got no hair to guide me! A part of me broke inside, not that I gave up caring but I just had to accept that I’m was going through a season where I didn’t look my best and being comfortable took priority.
Right now I’m 5 months post treatment (wow! that sounds strange) and everything has eased if not gone. The things that are still lingering are the tinnitus, pins and needles in my hands and feet, and insomnia now and again. I still get tired and weak but nowhere near as much as I did. I think because I was so restricted when I was so poorly I don’t want to stop now. I love that I can now do the little things I didn’t realise took up so much energy. Things like cooking tea and clearing up afterwards. I could barely do either. It’s nice to plan a whole day and actually go ahead with it!
I won’t ever underestimate the struggle anyone having chemotherapy is going through. The cancer isn’t what made me feel poorly (apart from the pain!). The chemotherapy crushes you! And it’s bitter sweet because you know it’s the only thing to make you better but you want it to end. I think that’s what’s the hardest to get your head round.
Every emotion is experienced all at once and you don’t know which one to express first. You cry for no reason, and somedays you may forget to smile, I had to remember that this wasn’t God’s plan for me, but he didn’t put this in my life and he doesn’t want me to dwell on it or wallow. It’s a learning experience and it’s time to get as much good out of it as you can. You’re a survivor and that’s pretty incredible. So I’ll take this chapter and add it to my testimony. And I’ll tell anyone who wants to know about it.
Like I said - everyone experiences these side effects differently. So if you’re reading this when you’re about to start this treatment, please don’t be upset or overwhelmed (stupid thing to say!). It gets better, you learn to manage them and then eventually they all end and life begins again. Also please don’t feel sorry for me that I had to endure this, it was a part of the battle and it’s finished now. My life is in a new season and it’s amazing,