Friday, 23 March 2012

Once prochoice, ALWAYS prochoice

Tonight I read something that has moved me to write this post. I am absolutely fuming and I'll explain why in a bit. First, some background.

I've had a molar pregnancy (read back or google to find out what that is). I had believed myself, and wanted to be pregnant, experienced all the symptoms of a "normal" pregnancy and was devastated to find that I was not growing a baby but a pre-cancerous tumour.

For a very brief while I was quite upset at the idea of other women being pregnant with real babies and then choosing to terminate these pregnancies.

Like I say, it was a short while. Because whatever shit thing has happened to me, it has NOTHING to do with anyone else's choices. Any other women keeping or not keeping a pregnancy has no bearing on whether the baby I had planned for would be here or not. Their bodies, their choices.

The backdrop of my own personal fertility problems is the ongoing international (or is it just the US and UK?) backlash against abortion rights. It feels like every single day I read some ridiculous piece of news coming from Nadine Dorries, Personhood laws in Virginia and transvaginal probes in whatever bloody state has decided women need to be humiliated because they are pregnant and do not want to be. Or cannot be...

Yes, women will find themselves pregnant after having unprotected sex. So what? Isn't it better that a cluster of cells can be removed instead of coming into the world unwanted or into difficult circumstances? I don't know the "reasons" why most abortions take place and I don't care. But this section from this article in the Guardian today has brought me nearly to tears.

Here it is:

...the female representative of SPUC said: "The link with breast cancer is because if a woman has an abortion, particularly in her first pregnancy, changes have to take place in her breasts.

"If during that pregnancy she has an abortion … then it can leave those cells in the breasts in a kind of half-changed state and statistically, that increases her risk of developing breast cancer later on in life."


Part of the problem with my pregnancy, and this was my first pregnancy, was that the tumour produces huge levels of the pregnancy hormone human chorionic gonadatrophin (HCG). This is the hormone that makes you feel sick, tired and...makes your breasts bigger. Mine got pretty bloody big, let me tell you. I had an operation to remove the tumour (more of which later) and one of the signs my health was improving was that my breasts went down. I find it more than offensive that SPUC suggests that this procedure could cause me to get breast cancer. It could have saved my life. (Should the tumour have been untreated I may have miscarried it normally but that may not have happened potentially leading to an infection and you can do the rest).

That's just my personal situation.

Let's think about the wider picture. Did you know that one in four of every pregnancies end in miscarriage?
Some of these miscarriages will be the embryo/foetus spontaneously leaving the mother's body. But for many women, the foetus' death will only be discovered at an ultrasound scan (this is what happened to me). Not only do you have the horror of learning that the baby you have believed yourself to be growing, talking to and planning for has died, you now have to do something about it. There are two routes: medical management or surgical evacuation. And whatever the situation, these women will have had pregnancy symptoms and hormones which SPUC are suggesting gives you breast cancer.

Then there are the women who will learn at some point during their pregnancy that there is something wrong with the foetus, that it would never live outside their body, or the many other reasons why women end up having terminations of pregnancy.

What would SPUC have us do?

Not every single pregnancy is viable just as not every single pregnancy is wanted. SPUC and their compatriots would do well to remember that they are talking about ALL women when they make up these lies. There are many many of us out there who have had these procedures from medical necessity AND through choice. All are equally valid and none of us will accept the blame should we develop breast cancer later on in life.

Thursday, 9 February 2012

Being equal to something

A little while ago, well, probably 15 years or something, I read a Barbara Vine book called "The House of Stairs". I was probably too young to really understand it properly but there was a character called Bell in it and she was a bit of a funny one. When someone asked her to do something she didn't want to do she'd say, "I don't think I'd be equal to that". Other characters muse on what a funny expression it is but I think it makes perfect sense.

This probably won't be a nice post to read, nor to write, but I want to. Last night, after visiting the hospital I was very tired and scared and got very very upset. I had decided last week that I didn't think I'd be equal to having chemotherapy* and last night I talked about that with my partner. Well, I say "talked", it was more like bawling and wailing so hard I couldn't breathe. It was not the happiest hour of our relationship.

I felt that I simply couldn't face it. I'd had enough already. I was sick of having blood taken, and simply knowing about it all. I didn't ask for any of this. I just wanted what everyone else seems to have easily (and I know it's never that simple, but that's how it feels). It's terrifying to have the various chemotherapy drugs explained to you, terrifying to be told that if you need to be admitted you go in the very day they decide you should be. It feels that there should be another way - is there nothing *I* can do to help myself? Nothing herbal, holistic, meditative? It feels there should be an alternative.

There's so little choice too. It's just taken for granted that of course you'd be willing to go into hospital and endure the treatment. Why wouldn't you? Why wouldn't you want to be well?

But it's not about that. It's about being equal to something. Being able to willingly submit yourself to the treatment regime. Willingly submit yourself to what someone else is telling you is good for you, when every part of you is screaming that it can't be. And again, the unfairness of it, that I just wanted what everyone else has comes back to taunt me.

So I decided I wouldn't. If they called me, I wouldn't go. I'd give it a week or two, more than is advised, then maybe I'd go in. Or I'd run away somewhere, to avoid the calls and letters, friends and family telling me, it's for your own good.

What about me? What about what I want? What about what I wanted? It's impossible not to keep coming back to this thing, to scream it, cry it out...All I wanted was a baby. Just one. I've never wanted three or four. Just one, to be my child, to raise, to love.

It was a hard night.

It was a night of processing all the information outside of myself, because to try to do it inside myself would be impossible. And I think, I hope, that perhaps now I might be equal to it. I am full of the most admiration for women that have gone through it. I can't imagine myself ever being so brave, so strong. And if I get that call, perhaps I will pack a bag and run away. I'm not saying I won't. But maybe it won't be the first thing I do.

*NB I am in the early stages of follow-up and so far the results do not suggest I will need to have further treatment. However, this is beyond my control and subject to the results of the fortnightly blood tests I will have until my HCG level reaches zero.

Sunday, 29 January 2012

Kind Internet Peepul

This post is very nice. It's heart-warming and cheering.

It's about me, and my boyfriend. Nice, eh?

And I'd just like to say how lovely everyone I know on the internet has been since I was diagnosed. The support has meant so much.

I particularly like how traditional methods of communication - the post - and totally contemporary ones - Twitter, Facebook and Livejournal combine in such a way that most of my (handful) of cards are from friends I've made on the internet. There's lovely, non?

I think I'll leave it there. Maybe come back later when I'm not thinking about the Phish Food in my freezer.

Saturday, 28 January 2012

Grief, loss, health and sadness

I'm not sure where this post is going to end up, but I want to write about what's in my head.

I am now two weeks post molar pregnancy diagnosis. This time two weeks ago, I think I was in bed, fully dressed under the covers, with my partner, crying my eyes out because I was terrified of having a general anaesthetic and an operation up my lady-bits.

Things have moved on since then and I've observed a few things about what has happened to me and the effect it has on other people.

When you lose something, when you are grieving, when you are ill people really *really* want you to be ok. To the extent that they don't really want what is happening, to be happening.

Those of you reading who have lost, been ill or been very sad will know that feeling when you realise "I have to experience Every. Single. Second. of this."

There's no running forward to the "nice bit" when you're "over it", or "better" or this is a "distant memory". This is happening to me, right now. It's difficult, painful, hard and there's no getting away from it. I wake up thinking about what happened, what is happening, and what may happen. That's a constant record playing in my head. I can't switch it off, sometimes I want to, sometimes I don't. Sometimes I can think "this has happened to me, I'm dealing with it, I'm ok." Other times I think, "THIS HAS HAPPENED TO ME! ME! Boring old me, who nothing of any consequence ever happens to! How did this happen? Why me?" And that goes on and on and on in my head for a long time.

No one can answer that question. No one can make it better, or take it away, or change it, or pull me through it so I don't notice it's happening. No one can do that. I just have to grind through every single second, of every single day until one day I wake up and can think about something else before I think about how I am going to get through the day dealing with the many things that are happening to me because I had a molar pregnancy.

But oh, people wish so hard they could make it better, take it away or change it. They wish so hard, and you have to be thankful that they're trying.

And yet, and yet. I don't want to be thankful. I don't want to be thankful to the GP telling me that this will be a distant memory in six months' time. Because she doesn't know, does she? She can't predict the future. No one can, and these circumstances are so awkward, so strange that no one knows what will happen. My levels may drop, drop, drop then plateau or even rise. And that means I will have to have chemotherapy. No one can give me a timescale, no one can tell me what will happen. No one can tell me what to do to make things go right. Because nothing can. I just have to sit it out and hope for the best. So trying to tell me that it's all going to be ok seems rather...ignorant. Unhelpful. Pointless. Insulting. Offensive.

Then there's the "it could be so much worse" camp. You know "At least you haven't lost a leg in a landmine!" "At least your partner doesn't beat you up!" "At least you have a house and a car and a job!" And you know what? I'm eternally grateful every single day of my life that I live where I live, that I'm from the cultural background I'm from, that I have the education I had, that my life is charmed, basically. I'm probably more grateful than most people because a large part of my life is dedicated to raising awareness of the people for whom struggle, abuse and brutality is daily business. But you know what? This is happening to me, right now. And I'm sorry that other people have harder lives, I am. But this is the hardest my life has ever been and I'm trying to deal with it, second by second. Making me feel guilty for finding it hard...doesn't help.

Finally, there's the "think positive" crowd. Don't think about the "bad" things that could happen. Focus on the good stuff! Keep smiling!
I don't much feel like smiling to order today. Strangely, I never did. And I really don't feel like smiling to make other people feel better about what is happening to me. It doesn't help, it just makes that shard of bitterness inside me get an inch bigger, every time.

Sometimes I don't feel like being brave, or strong. I don't feel either of those things right now. I wish this had never happened to me, and it has. I wish I could go away for a long time and come back and it was all over and my life was different and better. Or I wish I could swap with someone else for a day or two, then come back and get stuck in. But I can't, I just have to keep going.

I'll deal with this my way, and that's allowed. So if someone wants to tell me to "keep smiling" I'll have to point out, right now - I haven't got much I feel like smiling about. If I want to be scared about the possibilities of chemotherapy, or never being able to have children in the future, I'll be scared about that, thanks. And it's sad, but a fact, that nobody can do or say anything at all to make it go away.

Thursday, 26 January 2012

The to and the fro

After a molar pregnancy, you have to have your levels of HcG monitored to ensure that they fall to 0. If they don't fall to 0, this can mean there is tissue remaining in your body which is still producing the hormone and it shouldn't.

As this is such a rare condition there are only three centres in the country dealing with the monitoring. It's not done at your local hospital so the process is supposed to be that once your hospital thinks that's what you have, they check your histology/pathology, and then send the, er, samples, on to the centre for further checking, confirmation and follow up.

Charing Cross then take over your monitoring and post you out vials which you take to your GP who take your blood which you then post back to CX. They then analyse your blood for HCG and you can call and find out what you levels are. Your levels have to go down and if they don't, I believe you're then admitted to CX to start chemo.

Wednesday, 25 January 2012

Where I am today

Had follow-up with consultant/registrar today.

I'd called the office on Monday, as instructed when I left hospital last week to make sure I was in the system. The secretary was appallingly rude to me and made me cry A LOT. I was so distressed my partner (usually extremely mild-mannered) called her back to tell her off. She said that the consultant didn't deal with molar pregnancies and asked me where I got the number. I found this deeply offensive, as if I'd looked for gynaecologists in the Yellow Pages and decided to take a punt. She also took my phone number down wrong (only the first eight digits) and I had to force her to take it down properly. When she called me back she said, "Sorry we got off on the wrong foot" as if I'd started it, or been rude to her in any way. In reality, I just didn't want to be spoken to like I was a piece of shit on her shoe.

I don't like going to the doctor or having to deal with medical stuff at the best of time so I had a lot of concerns before the appointment. Waiting for an hour didn't help my nerves much either. In the event, I saw the registrar, who was actually very kind.

I've done a lot of research myself, so she didn't tell me much I didn't already know, although I did learn that my pre-op HCG levels were over 400,000 which is extremely high. No wonder I felt so incredibly ill all the time. I also told her that the secretary had been horrible to me and she apologised, and said it was my right to phone and ask questions.

Apparently, the referral to Charing Cross was made on the 19th, but CX hadn't heard of me on the 23rd so I've asked them if they've received the referral and hope to hear from them tomorrow. If not, it's back on the phone to Ms Stroppy-Pants. I hope the referral has arrived!

Am mainly hoping that my levels go down, down, down steadily as I obviously really don't want to end up having chemotherapy.

Yesterday was a pretty bad day. I went out for brunch with a friend which was lovely, but I felt so tired after. As I'd napped the day before, then slept badly at night, I didn't nap which meant I was so tired and feeling fragile. I was tired of it all, and just wanted to hide away somewhere until it went away. I still feel a bit like that, but I suppose it's not a realistic option. So just trying to stay calm and hoping so hard the levels go down quickly on their own. GP on Friday for the follow-up there as they're the ones that should be doing the blood tests. I've put together a "pack" of information for the GP, with a letter from me with the latest details, the discharge letter from the hospital and a leaflet from The Miscarriage Association about Molar Pregnancy as apparently lots of doctors have never heard of it. See? Tiring. Doing the thinking for everyone else.

Sunday, 22 January 2012

New Year

So far, 2012 has been pretty shit. I've felt so horribly ill with severe pregnancy symptoms (although not vomiting) and then we get to Saturday the 14th and the horrible news about having a molar pregnancy. And then going to hospital, starting a miscarriage, having the D&C operation, having tachycardia and a temperature after, staying in instead of going home. FINALLY getting home and all the things that have happened since then. This was a week ago.

Then there are the things I was expecting to happen in 2012. I was finally going to be a mummy, and have a little baby of my own to love and look after. At Christmas I hugged my secret to me and thought about having my baby to play with and entertain my family that time next year. Couldn't wait.
It didn't really matter that there was going to be huge upheaval at work, I wasn't going to be there for long and when I did come back, things would've settled down and hey, I was going to have a baby. That would be my main focus.

And tomorrow is Chinese New Year, and I think I'd like to start 2012 again. Well, not again, but necessarily with a completely different mindset. Lots of things aren't going to happen now, and lots of things are, which I will have to deal with properly.

What's on my mind today is that I will probably be going to hospital a lot and keeping my fingers tightly crossed that my levels of the pregnancy hormone drop through the floor. If they don't, I'll have to have chemotherapy. Which is really frightening, but I'll cross that bridge, if and when I come to it. I sincerely hope I fly down the motorway right past the chemotherapy bridge! But, if I have to do it, I'll have to do it. I've got to face it all and face it down.

It's the year of the dragon, which inspires me a lot. I'm glad it's not the year of the rooster which it was the year I was born!

I like dragons. I like them for lots of reasons. They breathe fire, they can spread their huge wings and fly away from danger and trouble. Or, they can fly towards it, knowing they have the tools to protect themselves and others. Strong women are often called dragons, for saying what they want, what they expect and for not being afraid to be their real, powerful selves.

It's not going to be an easy year, I have so much in front of me, but I'm going to do my best. And be a dragon.