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.

Friday, 20 January 2012

Recovery - Monday pm

I was aware of having vague dreams about people from work and then came too properly. It was 5.45 so I'd been under about half an hour, if that.

There was a nurse on either side of me and one was holding my hand. They were called Vicky and Amy. Now, I've never been to a spa, but I don't know why you'd pay lots of money for that when you can just have an operation and have a lovely time in recovery. It is AMAZING.

I think I said I'd been dreaming about work, and one of the nurses said something about having time off and I said "Too right, I'm going to sit on my fucking sofa" (when I told my mum this she told me off for swearing. But I was on drugs!!)

I probably dozed off for a bit as the anaesthetic man came and said hello and I said I was ok. Then the surgeon came and said it all went well and I said, "No holes or haemorrages?" and she said no. Wow, bad luck really does have a limit!

So I was just lying on my back, holding hands with the nurse with a blood pressure thing on my right arm going off every few minutes.

Then I said I was cold so they told me to put my hands inside the covers and I said, "But I won't be able to hold your hand then." and they said I'd be warmer, so I did.

My left hand was hurting with the canula so I was saying how much that was hurting, and probably because it was closer to my brain. I think I asked what painkillers I'd had and they said I'd had paracetamol, codeine, diclofenac and fentamil. Fentamil is synthetic morphine. I asked what morphine was made of and they said poppies which I did know. Duh.

I asked for more painkillers because I could feel my tummy and they put it in the back of my hand. I just chatted randomly with one of the nurses and complained about the canula and about being cold. I ended up with three blankets tucked up round my shoulder and I got them to rearrange the blood pressure cuff because it was pressing on the bruise from where I'd had the blood taken before. I also kept asking for water because I was bloody thirsty and knew I needed to wee before they'd let me go home. Always thinking ahead, me. ;)

So eventually, I went back to my bay.

Monday - continued

After the blood tests the midwife said we should go home for a couple of hours and return to the ward at half twelve. Unfortunately the hospital and our house are on completely the opposite sides of the city with a lot of traffic inbetween. Fortunately, my lovely brother and his family live close to the hospital. I texted my brother asking if we'd be able to come round and he jumped straight in the car. I have a wonderful family. :)

So he picked us up and took us back to his for an hour and a half. I was in a lot of pain, but the paracetamol kicked in and I just lay on their sofa and chatted while Rob played with our nephew. It really really helped us both feel a lot better to get out of the hospital, see people who know and care about us and see the baby. I feel a bit strange about babies at the moment but I just don't think about it too much and it's ok.

At 12.10 my brother took us back to the ward. It's a big, separate unit so we walked down to the day case section. It's a bit of a funny set up really as there's a waiting area in the ward where we waited for an hour, with women coming back from surgery, going and coming back from meetings with the anaesthetists and all sorts. I had the most stuff! Haha.

I had a quick meeting with a nurse where she gave me my identity bracelets - I had my own barcode! - and took my blood pressure, heart rate and temperature. The machines kept breaking down so it took longer than it should and we had to go to the canteeny bit as there were no private meeting rooms. I felt quite calm at this point and the nurse was brisk but kind.

Back to waiting waiting waiting. We spoke briefly with a couple of the other women who explained that it was really busy, and a woman who'd had her operation came to sit with us as she was being discharged and they needed the bed so badly she had to finish recovering in the waiting area! I was partly horrified, but partly glad that you *could* recover like this, if you see what I mean. It was all a bit hectic.

Then I heard my name mentioned, probably about 2pm or half two, so we'd been waiting at least and hour and a half. A brisk HCA (old auxiliary nurse?) came and took me to a two-bed bay, made up a bed and told me to put a gown on. Things were happening. Then a surgeon came in, who I'm sure said she was called Dr Fookay. Anyway, she went through what was going to happen very quickly so we had to ask her to repeat herself and she slowed down. With the problem I had there was more of a chance of a haemorrage, so I was more likely to need a blood transfusion, and more liking to have a perforation requiring a laparascopy and laparotomy which would involve going through my bellybutton to stitch it, or through my stomach. So I could wake up with holes in me and a transfusion going through. I was feeling pretty unlucky so I said I supposed that would happen. So then I had to sign saying I understood what was happening. I was a bit disappointed that Mr Smith (the consultant we met briefly on Saturday) wouldn't be doing the operation as I'd been added to the list but at that point I didn't really care enough to say anything.

The surgeon left and the HCA returned, realised that the bed wasn't suitable for surgery so I was moved to the other one. I put my dressing gown over the hospital gown and kept my tracksuit bottoms and socks on. So we returned to waiting...

All day I was texting, tweeting and playing scrabble with people which really helped.

I think at about 3pm the pain started up again, really bad. I was crying and groaning and Rob was amazing, rubbing my back and helping me through it. My bed bay was opposite the front doors to the ward so we had pulled the curtain round. Rob went to find a nurse to give me some painkillers and I got two paracetamol which let me sleep for an hour. When I woke up Rob was asleep so I let him sleep but then accidentally kicked him. Oops. Then the pain started up AGAIN, even worse so I started crying and groaning again. It felt so unfair that I was in hospital, not pregnant at all, about to have an operation AND in pain. It was too much. The nurses heard me this time and they kept asking "Why are you crying?" (nicely) but it was like - wouldn't you be crying? It was amazing that I had moments when I wasn't crying, really! So they offered me codeine. I was a bit reluctant to take it as the last time I'd had it I vomited and that really was the last thing I needed. I think this was about 4.15pm. They gave me one which really helped calm me down and took the pain away. Then at 5pm the HCA came and said I was going down to theatre. Wow!

I had a quick wee and took off my clothes. I said I wanted to go down on the bed because I couldn't really walk so I had to lie flat on the bed with the gown undone and not lying on it at all. The HCA told me to keep my hand under the covers to keep my veins wide for the canula. Good tip.

So she took me down with a porter called James. She said she was taking me because she had the same birthday as me. Coincidence! And she and James nattered about how long they'd worked in the hospital. We went down towards the day case ward and right into the theatre and through what looked like a server room into a little ante room. Barely bigger than the bed.

There was a male anaethetist called Dr Wil-something, a brown anaethestist who I want to call Lola and a theatre nurse called something Spicer. They introduced themselves. The male one said he had to make sure I was fit and healthy so asked about implants, metal and what not which I don't have. Then he said he'd forget it all so nurse Spicer asked again.

While they were talking to me the HCA had a grip on my left arm and Lola was wiping the back of my hand to put the canula in so I braced my head on the bed. I think my eyes probably welled up as they asked if I was OK but I was losing my voice because I was scared so I could say was "frightened". Then they put a mask on me and told me to breathe deeply and I could tell the man was putting syringes of stuff into the back of my hand. My face started prickling so I think I lifted my right hand to touch it and then they said it was normal.

Then I started waking up...