This is a story about forgiveness. It is also a story about community.
This is the post that has stopped me writing so many others. It’s a part of my history which defines so much about who and what I am today. But it does not define me.
This is the story of Molar Pregnancy and me.
I forgive easily. I don’t hold grudges and I talk out pain at any given opportunity. But, in 2009, Molare Pregnancy happened. Then, it wasn’t quite so easy to forgive. Molar Pregnancy taught me many things. It showed me how ugly my own anger could be and how that anger could make it so much harder to forgive.
Molar Pregnancy taught me how to consciously forgive and that the hardest person to forgive can be ourselves.
Why human connection matters
I blog to build connections.
O ur journey through life is marked by the connections that we make by way of shared experience, outlook, interests and aspirations. Human connection is what makes the world go round. It is the connections that we make in life that can provide us with sanctuary, understanding and acceptance. In connection, we find community.
I have tried to connect with you without sharing this part. Not because it still hurts, but because I couldn’t see the connection between Molar Pregnancy and this blog. But Molar pregnancy clarified my perspective on life and that is the very reason that I blog.
How I found acceptance in a community
Shortly after Molar Pregnancy came into my life, I met an amazing group of women online who were walking in those same heavy boots. That was 9 years ago and I still keep in touch with them from time to time. We were each other’s tribe. Often the only people that truly understood. In that community, we could all share those thoughts and feelings about which we felt most ashamed judgment free. Those women were my lifeline.
We are each unique, but the experiences that we collect on our journey through life very rarely are. That means that in our super-connected world, finding the person/people that are perfectly placed to envelop us in acceptance is a is just a few clicks away. If you’re lucky, you might even find that one of them lives just around the corner.
Reach out for that someone that reaching out to you too.
And the reason that I finally decided to share this story is also based in community.
A few days ago, I met someone in my own Facebook Group who blogs too. And the very first post of hers that I read mentioned that she had had a molar pregnancy. Nine years on and someone just popped up in my Facebook group with a history similar to mine. She popped up two days after I’d had a discussion with my husband about whether, or not, this story belongs here. Coincidences? I call it the magic of community.
Why I didn’t think that this story belonged here.
I didn’t want to write this post because it feelt like a plea for sympathy.
I didn’t want to write this post because I still feel guilty that I had cancer that was treated without the need for hair-fally-outy drug regimes. It felt wrong to write about cancer from which I am so categorically considered cured that the term ‘remission’ doesn’t apply.
It’s all to do with guilt
I felt guilty because I was told, from the off, that I never really had to face the possibility that my chemo wouldn’t work.
I felt guilty because my critical illness policy paid out and I’m still alive and didn’t have to face the prospect of not being. I feel guilty because I am not one of the many women I know who had it worse than me.
In other words, I hadn’t been able to forgive myself for having an easier ride of it than most. I hadn’t been able to forgive myself for having a body that allowed Molar Pregnancy to happen. That was what stopped me from writing this post.
Then, I realised that writing this story isn’t about me. It’s about forgiveness and it’s about community.
Let the guilt go
I am writing this story to tell the women that come across it whilst on their own Molar Pregnancy Journey that there is so, so much hope. I want to make sure that you know that it’s ok not to be ok. It’s ok to feel all the feelings – and there will be lots. I also want you to hear that one day, it might even seem inconceivable that it happened to you.
I’m writing this post because it is estimated that 1 in 4 UK pregnancies end in loss and it still a taboo to talk about it. Women have come together in community to share their pain, together with their joy since the beginning of time and we need to put this topic back on the table. What’s more, it’s easier than ever to find your tribe – if it doesn’t already exist online, create it.
I found mine in a molar pregnancy forum. The girls that I met there are the amazing set of women that I told you about above. They are the human connection that made the hardest days durable.
What is Molar Pregnancy?
I’ll just pause here to say that I have researched some up to date facts and figures for this post but I have no medical training whatsoever and know what I know purely from personal experience.
Drug regimes may well have changed since I was treated in 2009/10 and your medical team know best about that. What most of them will not know about is what it feels like to actually live those days. That’s something that I am well qualified to talk about. It’s also where community comes in – finding someone/people who know what it feels like to live with the anger, pain, frustration and sadness that you’re feeling is a massive help. To find that someone that lets you breathe a sigh of relief and you realise that you are not alone. That community that allows you to start to forgive yourself
Whatever the cause of pregnancy loss, there is someone out there who is or has been exactly where you are. I would encourage you to reach out to them. If you’re dealing with molar pregnancy, I can’t express enough how great a place to start molarpregnancy.co.uk is. Please also feel free to message me if you feel it would help. I will reply as soon as I can.
The practical bits – for the non-medics amongst us
The NHS describes Molar Pregnancy as:
“Where a lump of abnormal cells form in the womb instead of a healthy foetus.”
To be clear. This is NOT womb cancer but the abnormal product of conception. Why this abnormality happens is unknown.
There are two types:
- A Partial Mole: where an abnormal foetus starts to form but it is not capable of ever becoming a healthy baby. As horrible as such a thing is to imagine, I find that the best way to explain this type of molar pregnancy as part foetus and part tumour. It is rare for a partial mole to go undiscovered past about 16 weeks gestation.
- A Complete Mole: the completely abnormal product of conception where no foetus is ever formed but, in its place, a mass of abnormal (tumorous) cells grow. Those cells look a bit like a bunch of grapes on a sonogram. It is highly unlikely that this will go undiscovered pas a 12 week scan. I had a Complete Mole and mine was discovered at 8 weeks after early bleeding.
Quick note here: Bleeding in early pregnancy is not, of itself, an indicator of molar pregnancy. I have friends who bled in the first trimester and went on to have completely healthy pregnancies and, sadly, a few who had ‘normal’ miscarriages. If you are reading this and have suffered any pregnancy bleeding please don’t give molar pregnancy a second thought. Trust your instincts and contact your GP or Midwife to get checked out. Molar Pregnancy is incredibly rare, so let that thought go.
I am not going to discuss the symptoms of a molar pregnancy because they vary from person to person and many can also be signs of a completely healthy pregnancy. This is a diagnosis best kept away from Google and diagnosed by the pros following sonogram, blood testing and, pathology.
An unplanned emotional rollercoaster ride
This was my first pregnancy and, like all first-timers, I really had no idea what to expect. When I experienced bleeding at about 7 weeks gestation, I Googled it (don’t do that). There were lots of possible causes, and I concluded that the cause was most likely to be entirely benign. After the best part of a week, it was still ongoing, so I decided that I had better visit my GP. I went expecting reassurance. Instead, an appointment was made for the next day at the Early Pregnancy Unit (‘EPU’).
I Googled some more (again, don’t do that) and discovered that, in rare cases, something called Molar Pregnancy could be the cause. I vividly remember thinking ‘well, it can’t be that’ and reading on. Feeling positive, I took on board all of the information that pointed to there being no problem and disregarded the rest.
I took that positivity with me to the EPU the following day, feeling that this was just going to be an early opportunity to see our tiny baby for the very first time.
“I’m sorry, I can’t find a heartbeat”
Hearing that is the verbal equivalent of being pummelled by machine gun fire at point blank range. I can almost feel myself recoiling right now.
Whatever follows, those words bring a dream crashing down. There is no cushioning in a stark, clinical hospital room. There’s no way to avoid the consequences of those words. However much I didn’t want to face our broken dreams (and I absolutely didn’t) I had no choice in the matter. No matter how much I didn’t want those words to be true, that pregnancy couldn’t stay inside me indefinitely. We had to discuss how it was going to come to an end. More bullets.
It is my understanding that most ‘normal’ miscarriages will take care of coming to an end of their own accord (but do, please, correct me if I am wrong). It turned out that this Molar Pregnancy was really quite intent on sticking around. Initially, I was given the option of waiting to see if nature would take its course or immediately being scheduled for an ‘ERPC’. ‘ERPC’ stand for this: Evacuation of the Retained Products of Conception.
Your dream of a baby, within minutes, becoming ‘retained products’ is such a horrible thing to hear. It still stings to hear it.
I chose to work with nature. But, within 24 hours, blood tests had shown that I had unusually high levels of the pregnancy hormone, HCG in my body. That high HCG meant two things: 1. This pregnancy was not going to come to an end naturally; and 2. It made it more likely that I had experienced a Molar Pregnancy. I no longer had a choice, an ERPC was scheduled for the following day.
Shock does strange things to us. Heartbreak does too. That’s completely OK by the way. Loss hurts, full stop. Let that pain touch you and you will find the beginning of the path that will walk you toward forgiveness on the other side of that pain. Through sharing with my Molar Sisters, I would later go on to discover that this pain affects different women in different ways. All of us there were feeling it. All were ashamed of it but, thanks to each other, we began to accept it.
Acknowledging that something really freaking hurts and giving your emotions space is OK. It’s more than OK, it’s a necessary precondition for eventually moving on.
On this occasion shock hit me something like this:
Too much white wine
Let’s hone in on denial there for a moment. We all do it.
On this occasion, denial showed up in the form of a woman so broken by the end of this pregnancy coming far too soon that she genuinely believed that if she hung on to the ‘retained products’ for a little longer, an actual miracle might just happen. A woman that believed that a later scan really could show that there had been a mistake. Either that or that her body was capable of miraculously bringing her baby back to life.
I’m a great believer in hope but, this time, there wasn’t any. Not until much later in the story, anyway.
At this point, I still had no idea what Molar Pregnancy was. The EPU midwife had told us very little about it other than not to Google it, and that it might result in us having to wait for at least 6 months (it turned out to be 18) to try for another baby. Wham another round of bullets.
For a long time, I was angry with that midwife for not giving us any details about molar pregnancy. I was angry a lot. Not angry in a shouty out loud kind of angry way, but inside I was coiled up with it day in, day out. Angry at Molar Pregnancy, angry at me and angry at the world. I’ve had to work hard to forgive myself for that.
Giving in to Doctor Google
One evening during the agonising 3 week wait between ERPC and receiving the results of pathology testing, I found myself home alone. I Googled Molar Pregnancy. Then, those machine guns did their worst.
Now, not only had a lost the dream of bringing a new life into the world but I had just learnt that I might have cancer.
I’m sorry, I wanted a baby, not cancer. Who even knew that cancer was a potential byproduct of an attempt to procreate?
Even tho I had read that only a handful of molar pregnancies (usually of the Complete Molar kind) need treating with chemo, I was beginning to panic.
Let me repeat again that this is a very rare occurrence (so rare that it’s hard to find reliable statistics) and, even if does affect you, the likelihood is that your body will do its thing and let the pregnancy tumour go without the need for chemo.
So now, I had lost a baby and might have cancer. And we all know what chemo means, don’t we?
Stop that train of thought right there
Not all chemo results in infertility. Yep, that’s right, not all chemo results in infertility.
I know this because I did go on to need chemo.
My Consultant advised me that the specific drug regimes used to treat Gestational Trophoblastic Disease ( or ‘GTD’ – the term used to describe a Molar Pregnancy that needs chemo) do not result in infertility. Whether that is by design or happy accident, I’m not sure. What I do know is that I have two little post-molar miracles as proof of that fact. I also know many women who have gone on to start and/or complete families since chemo, the majority without the need for IVF.
Searching for the positives
In amongst all of this fear, devastation, anger and pain there were two pieces of good news. The chances of GTD killing me were infinitesimally small and the treatment would not end our dreams of starting a family.
8 years on from finishing my treatment, those two things seem like tremendous positives – because they are. But, as us molar ladies know, when you’re on the hospital-chemo-blood test merry-go-round, finding the positives and hanging on to them is nearly impossible.
That my cancer was highly treatable was, without doubt, reassuring. My consultant had never treated a woman who had not fully recovered. Also very reassuring. However, to be sitting in that consultant’s office about to start chemo, I had defied the odds in the first place. There was a chance, no matter how tiny, that I might be his first loss.
I went on to need 5 months of chemo and, as did my ‘molar sisters, during that time I experienced some of the greatest challenges of my life.
It happened once, and only once, that time when I lost faith in myself and the drugs. I think, in truth, it was because it was during a moment that we have all seen in films and on tv and my imagination ran away with me, but it happened. My husband and I were snuggled up on a bench on the cliffs above our favourite beach looking out to sea as the sun began to set. As I watched the waves crash on the rocks below, I found myself thinking “I don’t think I am going to beat this”.
Thank goodness I was wrong and I didn’t even come close to staring death in the eyes. There goes the guilt again – my cancer wasn’t that bad, no IV drips, no hairloss, no ravaged body, what right have I to even call it cancer? It doesn’t compare to the stem-cell treatment that one lady I know had to have, or the life-sentence handed down to my father-in-law with prostate-cancer. What right did I have to even let the thought of not beating this thing enter my head?
Answer: I had the right to feel whatever I needed to feel. We all have that right. Always.
The hardest thing to forgive has been me
And that’s why I am writing this post – that experience shaped me, it tore me apart and, I think, made me a better person. Long after the physical healing was done, the emotional pain lingered inside me. A mixture of anger, guilt and deep sadness.
We are all, every one of us, fighting a battle at one time or another in our lives. We all have a story to tell. We are all a bundle of feelings desperate to be set free. How ‘bad’ in relative terms my cancer was should be completely irrelevant to the way that I dealt with it. Some of us are hit harder than others. Some lows, lower than others. That is the way of life. The challenges and the hard to deal with, feelings just as valid from one person to another.
The world can’t share your story if you keep it locked up inside
I’ve had people comment on the fact that this cancer was never going to kill me, and I have interpreted that as akin to them saying that it wasn’t really cancer. It probably wasn’t meant that way. My interpretation is probably more a reflection of my own guilt at getting away with it, comparatively, easily. That guilt made it difficult to share with real life friends – how could they possibly understand? I’m not sure I ever gave them the chance.
I let that hurt eat me up inside. But I wasn’t sharing those feelings. So nobody knew what I needed help with, let alone how to help to heal that pain. Share your story and the world around you becomes a more understanding place. Share your story and you release your internal pressure valve. You begin to let the pain go. And you begin to forgive yourself.
The long, long wait
This type of pregnancy loss is particularly cruel because, not only is it a two-parter but, it also comes with a hellish wait. The UK medical advice, at the time, was to not try to conceive again until 1 year after the end of treatment.
We made it to 11 months. 11 extremely long months. 11 months during which the world continued to spin on its access and 117 million babies were born. Just none of them mine. That wait was the hardest part of it all. And that’s a story for another time.
I was lost.
In the 18 months during which molar pregnancy ruled my life, I felt lost. Inhabiting a no-man’s land somewhere between pregnancy-loss, critically ill and infertility. I didn’t fall fully into any of those camps, but I had at least part of a limb in each. And I felt guilty that I didn’t full squarely into any of those camps. I don’t know where to start with trying to explain how that made me feel but I did know where to go for comfort and acceptance – my Molar Sisters.
Finding them and sharing within our community gave me a safe place where I felt accepted, awful feelings and all. Finding that community was what allowed me to start forgiving myself. I will never stop being grateful to each one of those girls for that.