I'm tired

That's all I have to say about it all.

I'm so tired.

Had a lovely weekend, mostly made up of entertaining the children - swimming with baby girl and her brother, Santa's Grotto visits and Sunday lunch. X Factor final night... two drunken boys coming home late on Saturday night. A slight hiccup with my medication.

And I'm exhausted.

J has gone back to work today after his sabbatical from work. It's gone far too fast, and I miss him already. I'd got used to having him around and relying on him. It was very difficult seeing him go off this morning, and I might have cried a little bit, which probably made it even harder for him (sorry, dude).

It's going to be a long week if it continues like this.

Oh, and it's my birthday on Saturday.

All the others

Wow, what a weekend - we've been here, there and everywhere doing everything Christmassy... I've loved it! Though I'm paying the price a little for it now.

I've taken my doctor's advice and stopped pushing myself, so I'm feeling a lot better in terms of hip pain and tiredness. But now I'm noticing all the other things... it never stops!

On Saturday I was out with my friend G and in the wheelchair for most of the day. That night, though she didn't let on, I know G was suffering with sore arms from pushing me around all day. Yesterday I managed on my two crutches (called Mark and Owen!) but by the end of a busy day leaning on them, my hands and arms were agony!

I've lost track of what I'm taking my medication for - my cancer, the pain from the tumours, or the new aches and niggles!

Two steps forward, three steps back

Today isn't one of the good ones.

I'm fine, and my new freelance work is going great. I'm really enjoying it... it's only for two weeks, but there could be a possibility of me providing future cover if all goes to plan.

I'm struggling with my hip though. I'm not sure if sitting at the computer has triggered it - I've been at the kitchen table, working while dad supplies endless cups of tea and saucers of biscuits, but perhaps this sitting position has made me sore.

I was managing to walk unaided this past week or so. We went into London at the weekend and, although we took the wheelchair, I did a fair amount of walking on my own. It felt great. But now I'm having to use a crutch to get around the house and down the drive to J's car just to go out for lunch (which was yummy, by the way!). I feel like I've made such progress and now it's been overshadowed.

Positive thinking, I know that's what I need. It's mighty difficult when you're in such pain, though.

Oh, I do like to be beside the seaside

Our holiday to the Norfolk coast was more than I could have hoped for... baby girl and I had the nicest time. While we were away we had visits from numerous people - my dad and his partner, baby girl's daddy and his son and girlfriend, a few old friends came to spend days with us. The sea air did me the world of good... I'm currently able to walk unaided (if not for long) and to pick up Tinkerbell without any help. I'm beyond happy. Can't make you understand how good it feels to be a mummy again. Being able to bath my little angel and put her to bed myself... just the little things mean the world to me.

The best thing of all about our break away was being able to take Mini Me swimming. I haven't been able to since she was born because of post-labour issues, then operations, chemo, more operations... so having a bit of a bob in the water with my baby girl held up against me was incredible.

Now we're home, and I'm feeling so well. It's ironic, really, that I have this "death sentence" hanging over me but I'm feeling better than I have in about 12 months! Lots of things are happening, and all good things.

Starting next week, I'm doing two weeks freelancing for a magazine - it's working from home, just covering some holiday, but it's going to be good to dip my toe back into some work. Plus a bit of money in the run up to Christmas will be very welcome!

Also starting next week, baby girl and I are going to baby singing classes and a tumbling tots group. I want to get her out and about and meeting other little tots while I'm well enough to take her.

I have no idea when my next chemo will start, but my friends and I have plans for the next few weekends (santa's grotto visiting, Christmas markets etc etc), so hopefully the poison-givers will hold off until the new year to let me have a nice birthday and Christmas - can't be worse than last year's birthday when I was having a bit of lung chopped out, anyway!

Sabbatical: to take a rest from work

You can call me cynical, but I think some of my friends and family may be taking advantage of this "Emmy has cancer" thing. Here's why...

Firstly, when I was in hospital having an "episode" a few months ago, my dad's partner handed her notice in at work with immediate effect. Apparently it was so that she could be around to look after my dad and me, but I have my doubts.

Then, my dad has really cut back on his writing work. Apparently he has his hands full running me around for hospital visits and generally keeping an eye on me.

Even my step-son has been trying to blag days off from nursery to "seep wick mummy" (ie, sleep with mummy). He's already learning how to be a slacker!

And then, J - well, he's pushed the playing the cancer card to a whole new level! He's taking a two-month sabbatical from work. Talk about milking it!

I hope you know I'm joking... I appreciate all of the sacrifices my family are making for me more than I could ever express. I get a bit uncomfortable talking about it as they've all done so much for me and I could never repay them. I'm humbled by it, to be honest.

J's two-month sabbatical started last week, and I already don't know what I'm going to do when it's over and he has to go back to work. He's had to agree to work right through Christmas to be allowed this time off - I hope he understands how much this means to me.

We're already trying to make the most of it. Yesterday, he and I found a baby singing and music group and signed up for it (with baby girl, of course). And now I'm off my treatment (for the time being) we're going to take Mini Me swimming as soon as I'm feeling up to it! Swimming was one of the things I was most looking forward to doing with my daughter, and I haven't been able to do it yet, so I can't wait!

Plus, my dad has booked a cottage on the Norfolk Coast so we're off there for a holiday. My baby girl's first holiday!

We have two months to make the most of. I know it's going to fly by, and I'm dreading December... but I'm quite excited about all our plans.

But... I don't want any of my other friends thinking they can use my cancer card to gain a free holiday - it's my cancer and I'm using it for all its worth, but that doesn't mean that y'all can!

Poorly Princess

My little princess is a poorly girl today. She's had a cold threatening for a while, but today it's out in full force. Bless her heart, she's quite a drama queen, throwing herself on the floor and coughing like an old man.

I blame the parents.

Now, don't get me wrong, I don't want my baby girl to be poorly, not one bit. But when she is, it gives me the chance to concentrate on her. And everyone else to concentrate on her. My dad asks "how's monkey feeling?" rather than "how are you?".

That might sound selfish and diva-like, not wanting people to ask after me all the time. I know they care, but it can get a bit repetitive and it frustrates me. My little monkey needs a bit more care and attention than I need at the moment, and that's fine by me.

I've drizzled her in Calpol and put a little spray up her button nose to help her breathe, and now we're settling down under our blankets to watch Finding Nemo.

The photo of her, by the way, is from her birthday a couple of weeks ago. I don't remember it properly since I had a bit of an "episode" that evening, but she looked beautiful... always does!

We miss you

Shoes, shoes, wonderful shoes

I think almost everything concerning cancer is nasty, but there are some real horrors out there. Just been briefly discussing this one with a friend and it made me want to write a little note about it...

Shoes.

All girls like shoes. End of. All of us. Those that say "I'm not a typical girl, I don't like shoes..." They're lying. Fact.

Since getting the tumour on my pelvis, my movement has been fairly limited. I use crutches for getting around the house and short walks, but have to be pushed around in a wheelchair the rest of the time.

Apart from being quite restricted with speed (on the crutches) and feeling like a lazy bones (in the chair), oh and the constant pain, the most heartbreaking thing about all this is not being able to totter around in my heels!

I'm a shoe queen. Think Carrie Bradshaw, and you're about there. There were several boxes of heels, boots and wedges when I moved into my dad's house last year. I've had to put most into the loft (at my dad's request), but I still manage to wear most of the ones I saved. My friends laugh at me for wearing my nicest boots - knee-high, high heel - when I'm out in the chair, but I'm not wearing fluffy slippers all the time just because I'm sitting!

In fact, because I'm not walking I can wear shoes that would usually hurt my feet. We've all got them!

There's no place like home

It doesn't matter what or where your home is, sometimes there is just nowhere you would rather be. I used to think that it didn't matter where I was, as long as I was with my family and friends then I would feel like I was at home.

Recently, I've come to realise that that's simply not true.

During numerous hospital visits and stays, despite always having someone that I love around me I've never felt like I'm in my special place... my home.

This weekend I talked quite openly to my dad. No one knows for sure how long I have - they've guesstimated so far, but until I start treatment and they check to see how I've responded, they can't really take an educated guess. And, because of that, there were and are a few things I feel I need to talk to people about sooner rather than later.

My main concern through everything is my daughter. Her daddy, my dad and his partner, and my friends have always worked so hard together to make sure my little Tinkerbell is cared for, loved, looked after... even when her mummy can't do it. I've no doubt in my mind that after I'm gone she will be happy, healthy and safe.

One thing that has been on my mind for only the last couple of days, is how and where I'll be in my last days. At the moment, I feel like I want to be at home. I need to know that my dad is going to be by my side. He's looked after me my whole life, and I want him to see that I go safely... and he'll need to know that I'm peaceful and ok.

I don't know if it's the right thing for my baby girl to be around me at the end. I think possibly not. I know her daddy will want to be with me, but I'm not sure he could handle it. I love him to pieces and he's as strong as an ox when he wants to be, but he's so gentle and sensitive - seeing me go would either help him, or damage him for life.

There are other special people, and I'm still to give some thought to them... what they can handle, what is best for them, what they're capable of doing due to circumstances...

My dad has told me I am thinking of everyone else too much, but I need to do that to keep my mind from dwelling on my woes all the time.

Panda.

And I miss you

I feel terrible today. I'm very teary and emotional. I think reality is starting to dawn on me.

My friends are going to miss me, and there's nothing I can do about it.

Every day this week, J has come home from work and told me "I missed you today". It's because he was almost constantly by my bed while I was in hospital having a little fight with life the other week. It's because he's soppy. It's because he's a big girl!

But it's made me think - if you miss me for ten hours while you're at work, how's it going to be when I go? I hope that J lives on for many, many years after me... so is he going to miss me for all those years? All those decades? Are all my friends?

My baby girl is young enough that if I was to go now, she wouldn't remember me. Sometimes I try to push her towards her dad, make her be a daddy's girl. She and I are very close because we spend all day together. The few times I've been in hospital, she's cried for me at home. There's going to be a time when she cries for me, but her tears aren't going to bring me home.

My dad and I have been very close for the past six or seven years, and even more so since I moved back home when I became a mum. Now he's a full-time dad and grandpa, but he's going to notice me going ever more.

I don't know what I'm trying to say. Probably nothing.

I hate that I'm going to be hurting so many people because of something that I have no control over.

I wonder if I'll be missing them all afterward. I wonder if I'll know.

To my dear friends

I need you to understand a few things... and I'll start with the most important point:

What I find most heartbreaking about all of this, is how much it's hurting my family and friends. And my friends who *are* my family. You can't begin to imagine how guilty I feel for what you're going through. I want to say sorry, but I know none of you will have it. "It's not your fault," y'all say. I know that... but it's because of something that's happening to me that you're in this situation at all.

Having said that, I am so appreciative for what my closest friends are doing for me. I'm not going to start listing people because you know... I couldn't do this without you all. I'm so glad we're all so close - you'll have each other to lean on after I've gone. I know you'll all be there to look after my dad and my baby girl and her daddy. I know how much you all love each other, and you'll all be ok.

I don't want to wish that my friends could understand how I feel, because that would be like wishing them in my position. And I never, ever want that. I do need to try to explain my moods though...

My closest friends will be more than aware that I am like a yo-yo at the moment. A couple of days ago I shut off - I know that, I was awful. I literally didn't say a word to anyone. I just needed some thinking time. I don't know what I was thinking, but my brain and mind were tired and I couldn't find my voice. That's ok, it doesn't mean I'm thinking of falling off the face of the planet or anything... I just needed some quiet.

Then the other night, I wanted everyone around me. I know y'all don't "get" how I can swing between the two conflicting feelings so rapidly, and I haven't quite got the hang of it, but you just have to bear with me until I find a way to "be" with all this.

Just because I'm crying, it doesn't mean I want a cuddle. And just because I'm smiling, doesn't mean I don't need a hug. Please don't be afraid to communicate with me. Please don't treat me any different... I'm still Emmy. If you need to ask how to be around me on a particular day, then ask. I'll tell you. You know I'm not one to keep quiet and not say what I want.

Don't be scared that you're going to offend me... yes, I'm a bit delicate and sensitive at the moment, but if you say something that you deem to be stupid, I won't hold it against you. I might be upset for a while, but I'll get over it. I don't know what to say myself, so I don't expect that anyone else will.

One thing I keep saying to people - there is no guidebook about how to cope with terminal cancer (there, I said it)... there are no rights and no wrongs... we have to figure it out as we go along.

Don't let me offend you either. Feel free to put me in my place. I might shout back at you, but we'll be ok... just ask Josh, we've shouted at each other a bit this week, but I still love him, we're still friends, we just needed to get some frustration out. He's not tiptoeing around me, and neither should you... if you need to tell me you're hurting, or you're angry, or you're happy... tell me. Please. I'll let you know if it's the wrong time to talk to me...

I think I may have babbled enough for now. I guess what I'm trying to say is that we're in this together... you, me, everyone...

Hello...

I know a few people are reading this now, and I'm not sure yet how I feel about that.

I was going to start a blog months ago. Someone recommended that it might be a good thing for me to do so I can look back in years to come, even show it to my daughter when she's grown.

But now I don't have years to come, so I'm not doing it for that purpose. Though I suppose Mini Me could still see it.

I think my main purpose for this blog is to allow me to go "blah". Sometimes I want to be on my own, but I also want to talk or express things. I've heard that talking to yourself is a sign of insanity, and I'm trying to avoid looking more mental than I already do with my bald head and protruding tubes... so that's why the blog.

And now some of my friends are reading. So you're seeing inside my head. You're getting a snapshot of how I'm feeling at the particular time I was typing.

Don't assume that if I write a sad or angry post, that that's how I'll feel the next time you see me. But don't assume that if I sound upbeat I'll be feeling as chirpy later that same day.

I'm a ball of complications and contradictions at the moment. I'm sorry, to my friends. I can't even begin to explain.

I can see this leading to an open letter... "things to tell my friends". I think that could go some way to helping y'all understand me a bit better.

Yes, that's what I'll do.

Just one thing I wanted to say - G, I know you're reading... for goodness sake, we all know you and K are back together, you can stop hiding it! ;)

I got the news I didn't want.

I'm not going to see my baby girl start school. I'm going to miss her parents' evenings, her school plays, her sports days, her school reports.

All those holidays we'll never get to have together. All the trips to the park, the zoo, the shops... anywhere.

I'm not going to be there to offer advice when she gets her first boyfriend. She'll never share with me all her secret crushes. I won't be there for her to bring a boy home to "meet the parents".

I won't be able to miss her when she goes away to university. Instead, she'll be missing her mum before she knows what university is.

I won't be able to hear the news "I'm getting married!".

I'll never wear a wedding dress myself, let alone see my daughter in one.

At the moment, I can't put into words what's happening, or about to happen. I've run out of words.

And I've no idea how I'm feeling.

I can't think let alone articulate my feelings.

Happy (?) birthday

Wow - this time a year ago I was in labour with my beautiful baby girl.

In fact, I think it was about this time exactly a year ago that I was on my way to the hospital. So that makes it kinda ironic that I'll be on my way there again in a minute...

I'll never forget the day I gave birthday to my daughter. I was terrified. I know all expectant mums say that... but I truly was absolutely petrified.

Particular quotes that I remember from that day -
Me to baby girl's daddy: "I've had enough now, it's your turn."
Me to one of the nurses: "When can I go home?"
Me: "I just want to go now..."
Afterwards, when I was being stitched up: "Fuck off, you sadist bitch!" Feisty!

It was all worth it. More than worth it. We were blessed on this day a year ago with the most beautiful daughter. And I wouldn't change a thing about her.

We've had an early start today, opening pressies and having her favourite breakfast... pancakes courtesy of her grandpops!

Now I have to get dressed and ready for a hospital trip.

Chemo Day.

It ain't over til it's over

Here's what he tells me...

http://www.youtube.com/watch?v=TmENMZFUU_0&ob=av2e

I forgot about it...

Yesterday saw me taking my baby girl to the doctor's for some more of her baby boosters. Just being able to be the mum and look after her for a change, allowed me to forget about the cancer for a little while.

Obviously it's always there. Always, always there.

But yesterday I was needed for something else. My girl threw the biggest hissy fit in the doctor's surgery... so much so, that we had to sit in the waiting room until she calmed down and then try again!

I know it wasn't nice for her, but I was so glad to be able to be relied upon. Even if only for a few hours. When we got home, Shorty snuggled up and fell asleep in my arms. There's honestly no nicer feeling.

I'm so blessed in so many ways.

Waiting game

I think the phrase 'playing the waiting game' can be applied to many things.

We play that game when we're as young as 16, waiting for exam results. Then again at 18, and once more in our early twenties as we reach the end of university.

Then you might wait to find out if an offer has been accepted on a house. You might be waiting for your boyfriend or girlfriend to commit - whether it be with a marriage proposal or another plan for the future.

There's the nine-month waiting game as you look forward to the start of a new life that you've created. That was my favourite kind of waiting game (not that we made nine months!).

Then there's this Waiting Game. (I feel it deserves the capitalisation.)

At the moment, everything is so out of control that it is very much a case of "wait and see".

We waited to get through the lung cancer, and it turns out that I was able to overcome that one... well, two.

Now I wait to see how the Ewing's Sarcoma is going to play out.

It's not really playing fair at the moment. I don't know if it has more players than me, or it just got to pick its team first so got a stronger support, but at the moment it's beating me.

I'm attending chemo, I'm eating how the dietician told me to, I'm resting, avoiding infection (how do you do that when you can't see infection?)... I'm behaving and doing everything right. But this one's out to get me.

My last scan wasn't my best.

It was just a friendly little update scan. I was expecting to hear "yep, see you again in a few weeks". I wasn't expecting to be told that the tumour isn't responding to the chemo. I wasn't expecting to be told this in such a quiet and level voice... the same voice they use to tell people how long they have left.

It didn't quite get to that, but the practical part of my brain is telling me that it's only a matter of time.

Let's look at the hard, cold facts -

1. Lung cancer. Twice.
2. Pneumonia.
3. Ewing's sarcoma.
4. Pleural effusion.

Someone or something is out to get me. My own body is out to get me!

Now I'm waiting to see if I can be fixed. My current Waiting Game is to see if I can survive this.

They'll scan again when this round of chemotherapy is over. Then they'll decide whether or not they're able to get in there and take out the bads.

My future isn't in my hands at the moment.

I'm sorry, but I'm not very optimistic.

And... the reality

The reality of it is cancer's a bitch. It ruined my year... well, my life.

I had a baby girl almost a year ago. She'll be a whole year old in four days. I'll be having chemo in four days. I should be at home getting ready for my baby girl's first birthday party, but instead she'll be at home with her grandpa while I'm in the hospital getting poisoned.

I haven't been able to do the normal things that new mummies do with the baby girls. I did, for two and a half months. Then my whole world fell apart. It should have been over by now - the lung cancer "fight" should have been over by now.

I should be able to take my baby daughter swimming. I should be able to take my little girl on a bike ride.I should be able to walk better than my wobbly little toddler girl can.

Instead, I'm almost confined to a wheelchair now thanks to my lumpy pelvis. And I can't go swimming due to risk of infection.

I can't be left alone with her at the moment in case anything happens and I can't help her.

I can't even keep my own baby girl safe.

No one can even begin to imagine how that feels.

And aside from the reality of that, there's everyone else - my dad, whose life has been put on hold to look after me; my baby's daddy, who has given up his life for a year to look after me; my friends, who give up on normality to look after me... basically, all the things people do and don't do to look after me.

I shouldn't be being looked after! I'm 26 years old! I'm an adult, for goodness sake! Why is my dad looking after me!? Why, on certain days, do I have to be lifted in and out of the bath by my baby girl's daddy? Why do I struggle to walk to the toilet on my own on a bad day?

It's not fair.

That's not to mention the love I've missed out on.

The fight

Everyone calls it the "fight". Everyone who hasn't done it, that is.

I'd better say one thing - all these phrases and stereotypes that surround cancer, I despise them. So please, don't patronise me with them.

I'm a stright to the point, practical kinda gal. I look at the facts, I deal with the facts.

Everyone, from my best friend in the world to my dad, tells me "you can beat this", "you're stronger than it", "don't give up the fight"... it's not a fight, it's an illness that I am trying to recover from; I can't beat it, I can try to get over it but I don't really have any control. And I'm not strong... I'm doing my best, but I'm not this strong person who can "kick cancer's ass". I'm just doing my best.

So here's what's happened and what's going to happen -

I had an op to remove the first tumour from my lung. All good.
I had some chemo. Not good, but it did its thing.
I had another op to remove the second tumour from my lung, along with half a lung. All good.
I had some more chemo. Meh.
Then the Ewing's.

I'm on *another* round of chemo for this. Then, if this chemo kicks in, they'll operate... they'll whip out the tumour and, if they have to, my pelvis. I'll get a shiny new pelvis. Or at least half a pelvis. The right half. Or wrong, if you will.

That's that.

In a nutshell

Hi, I'm Emmy. I'm 26. I'm a mummy. And I have Cancer.

I guess that's it. In a nutshell.

It started about nine months ago. It started in my lung. Then it made an unwanted second appearance in my lung. Then, despite having outstayed its welcome, it's returned... in my pelvis. It's even got its own fancy name.

Ewing's Sarcoma.

It's persistent, I'll give it that.