Karl's Funeral Speech - scheduled post

This piece of paper has been blank for so many days. I don’t know how to sum up Emmy on a sheet of A4. It’s not possible. So I won’t try. I believe that everyone has their own memories of her so I’m not here to plant new ones. I just want to express what Emmy meant to us, and I think to everyone that knew her. As you all know, Miss Amelia Ashwell-Day – who would be shooting The Look at me now for calling her that! – was one of a kind. The sweetest, kindest, softest little lady. She was truly something else. I believe she was wise beyond her years. Easily the smartest and quickest person I know, she might have been little and timid at first glance, but my goodness could that girl stand her ground and fight her own corner! Some people would call her stubborn, Em would call herself determined. I say she was strong. Stronger than she ever realised. To have lost so much but offered her dad all the love and support in the world during some difficult years – that takes a strong person. And a fantastic daughter. To have cared for and nurtured a baby that was hers in every sense apart from biological, that takes a strong woman. Especially to continue showering that boy with all the love in the world even after she brought her own new life into the world… there was never any difference in the way she thought of and treat Ashley and Brooke, despite having the obvious extra bond with her B. She’ll have my eternal admiration and gratitude for that. To have stood for several hours at a Take That concert half-way through treatment for what turned out to be terminal cancer, that’s mad in my book… but that was Em! Mark Owen and Robbie Williams, I take my hat off to you both, you absolutely made our girl’s day that evening. And Em was funny. She was witty and smart and could always quip back at you with a better response than whatever you’d just thrown at her. Seeing her in a full-blown argument was great! Ashley is taking a leaf out of his mum’s book… always has to have the last word. That comes from Emmy, even if she whispered it so, so quietly, she would have the last word. But the amazing thing is, no matter the argument and no matter who with, she would forgive and move on. Not many people can say they do that. She wouldn’t forget though and could use something from years ago against you in any argument – she never, ever let me forget about the football I kicked into her head in the playground when we were still at school! That turned out to be a happy accident, as it brought our Em into my life. Anyone who has had Em in their life can only consider themselves blessed. She wasn’t here for long – she started saying recently that you’re here for the good time, not the long time. It would have been nice for her to be here longer than her 27 years, but what she did in her short life was perfect for her. The most perfect part being our daughter, Brooke. Emmy was so scared about becoming a mum, but I’ve never seen her take to something so naturally. I think most people think of Em and remember her writing. She was a writer. But being a mum was what she did best. First with Ashley and then with Brooke. It’s what she was meant to do. Anyone who wasn’t fortunate enough to see Em with her daughter, you just have to meet little B to see – she is a mini Emmy. Yes she looks like her mummy, but all her characteristics and how she moves and touches, it’s all Em. I was the proudest man alive when Em brought our beautiful Brooke into the world, and I’ll always be so proud of her for doing that. We have the most beautiful daughter together and Emmy doted on her, I know she’ll be watching her baby and guiding her through life. (turn to coffin) Thank you, Emmy, for giving me the most precious gift a woman can give. I’ll take excellent care of our girl and she’ll always remember you. I think we should all learn something from Emmy. None of the usual life’s too short cliché that gets thrown around, but how to love. Emmy did love, she loved so very much. She adored her children, showered them with love and affection. She treasured her dad and held him so dear, and I know how much she appreciated Christine being in their lives. She never stopped loving her mum and James, and we hope so sincerely that she has found them now. She had such a special place in her heart for Josh. I know that. (look at Josh) Mate, what you gave up for Emmy is so credible. She respected you, adored you. Your world has been turned upside down now but think of how blessed you have been. And finally her friends. We are all so proud to have been such a part of her life. So many people always asked after Emmy – Gemma and I had so many numbers to call ten days ago and each one was difficult, but comforting at the same time to know that our grief is shared. It is very touching and has been such a comfort to John, Christine and ourselves. (turn to coffin, talk to Em) It’s time for you to go and play in the clouds now, Emmy Day. Thank you, for doing me the honour of being my very best friend. Thank you, from your dad, for every happiness you brought him. Thank you, from Josh, for being perfectly you. Thank you, from Ashley, for showing him a mother's love. And thank you, from your baby girl Brookey, for making her perfect, just like you were.

On Emmy's behalf

We have a checklist of things to do, but no particular order in which to do them. Emmy has left notes all over the place, instructions for each of us to carry out over the next couple of weeks. Her very first note told us all to crack open a bottle of wine last night and have a drink for her - we didn't need telling twice. We did need more than one bottle, however. Her next instruction is this: "I'm handing over my blog now to Gemma, Karl and Josh - I know you'll know what to do with it. Just follow your hearts and write whatever feels right, if anything at all. It was never a big deal anyway, but I know certain people (R, for one) do read it. Tell him Panda! Sorry if that freaks anyone out, I'm not meant to be talking from here, am I? Over to you, guys and doll!" We don't really know where to go with this, we talked about it this morning. We don't want to dominate it with "us" and how we're feeling - it was Emmy's space. So we decided we would just start by linking the list of songs Emmy has picked out for her funeral - there might be more added or we might not be allowed this many, but this is what our girl asked for. Stereophonics - Dakota Bruce Springsteen - Secret Garden Bruno Mars - Just The Way You Are (kind of chosen by someone else) Noisettes - Never Forget You Robbie Williams - Baby Girl Window (for Brooke and Ashley) Take That - Rule The World (for her dad) That's all from us for now. Karl, Gemma, Josh

Writing on Emmy's behalf - part 1

Hi, I'm Emmy's friend Gemma. I'm sitting beside Emmy right now and she's going to dictate to me as I type...


I've asked Gemma to type for me as it's taking me quite a while to type at the moment, and I keep getting my words jumbled. My fingers aren't working with my brain and doing as they're told. In fact, nothing's working with my brain and doing as it's told. My brain's being overrun by the tumour at the moment. When I speak my words are jumbled, but Gemma's ironing them out for me and making it all make sense!

I've been in hospital for a week or so as I started having some fits. We think the doctors have the right medication to keep them under control for now, but it's been a scary few days. I don't know what's happening when I have a fit, and it makes me forget the previous few hours. After a fit it takes me a little while to regain my sight properly and just get back with it. But hopefully they're more under control now anyway.

I'm so pleased to be home. I didn't see much of my little girl while I was in hospital, so I've spent a lovely evening cuddling her and putting her to bed. It's also nice to be home so my dad can relax better knowing I'm under his watchful eye. A couple of times, when I fitted during the night, my dad was called because I asked for him, so I know he won't have been sleeping properly and I worry about him. That might sound mad, but if I can't worry about my own family then who can I worry about!?

We did have some plans this Easter weekend... J and I were going to take mini me to London for the day to show her the sights. I want to take her on the Eye as she loves being up high and pretending to fly. A lot of that now depends on how I'm feeling... and the weather! I hope it holds out so we can get out and about, even if it's just into Cambridge if I can't manage London.

I do have more that I want to say but I'm struggling to get my words out to Gem, I'm tired... and I think some of it I'd just like to try to write myself some day... if you can bear with me and my jumbled brain, that is. So I will be back - I don't plan on going back into hospital anytime soon!

Beginning of the end...?

I'll warn you now, this post won't be pretty. I'm angry and I'm raging and I'm all messed up inside this afternoon.

I woke up ok this morning. Well, ok compared to now. It's World Book Day and my little step-son has gone to nursery dressed up. He was so excited he cried when he left... he wanted to take his little sister into nursery with him and she wanted to go, which kinda broke my heart, but it's nice to know they like each other, I guess.

But the day's gone downhill from then. I'm still in bed - it's gone three o'clock in the afternoon and I haven't climbed out of my bed yet. Or, more accurately, been lifted out of my bed.

I've just spent a week in hospital struggling with coughing up blood and whatever else was in my stomach. I had a couple of different treatments but I don't think I feel much different.

My lung tumour is being a bastard. It won't respond to the radiotherapy. It won't play nice. I hate it. It's what's making me ill.

And the tumour in my head, it's making me do stupid stuff. I can't lift my right arm properly, so I can't lift my baby girl up. My right leg doesn't do what I try to tell it to do. I'm so fucked off with myself. I get so angry - I just want to be able to do what I know my brain is telling my body to do.

I don't remember things. I'm writing some things down so I don't forget I've done them or I don't forget to do them. I'm so frustrated.

I feel like I hate everyone. I envy them all - my family and extended family, walking around with ease and chatting away without stumbling over words and repeating themselves like some fucking old woman with dementia... I hate them for it. I don't want them to be ill, but I don't want to be ill either. I just want them all to fuck off and stop rubbing it in my face. I'm too angry and jealous. I know I'm being horrible - here and in real life - but I just want everyone to leave me alone, for their sakes. I think it's working with some people, and that's good. It's what I want.

It's not fair. It's just not fair anymore. I feel like I don't want to do this, I can't do this. I want it to happen quickly now to stop me feeling so pathetic and to make the pain go away.

I just can't fucking do it now.

Battle of the brains

I've started this post a million times and always run out of words. I've started it this way for at least the last half dozen times. Sometimes I've got to here and stopped under a flood of tears, while other times I've got almost to the end only to be interrupted by my crazy toddler princess or her whirlwind brother, and then I've just never got around to hitting 'publish post'.

But they're both tucked up in bed, the rest of the family are dispersed around the house, and I've found some quiet time to type. I'm all cried out, no more tears left - so there's no threat of a flood! So here goes.

I don't know how long I'm going to be able to keep typing on my blog. I'm not sure there are many people reading it anyway, but it's kinda nice for myself just to get things down. A little bit like a diary.

Sorry, I digress.

I have news. It's not good news. So I'll just hit y'all with it - it's in my brain now. My bone cancer has gone from bone, to lung, to lymph node, to brain. Not necessarily in that order, of course - but it's slowly but surely working its way through my body.

I've got the headaches, I've got the dizziness, I've had the nausea and the actual throwing up. I've lost a lot of feeling down my right-hand side and have currently given up on even trying to walk. I've started to get slight blurring of vision, which adds to the headaches. I'm good for nothing most mornings until the pain in my head has eased and, on some days, the sickness has passed. Last time I was throwing up in the mornings it was because I was pregnant!

I'm getting frustrated with myself now. I'm bored of not being able to respond to "how are you?" with "I'm great, thanks, how are you?". Well, I could - but I'd be lying. I'm boring myself to tears with all my ailments and aches and pains. My little step-son is so confused about why mummy can't sit on the carpet for too long and play cars with him. He cries when I have to be lifted back up to the sofa - he wants to play some more, and so does mummy! It's not fair that I can't.

But on the other hand, he loves playing doctor. He's so sweet and caring, rubbing my fuzzy head when I'm crying in pain and bringing me a blanket when I fall asleep in the evenings, as I often do. There have been numerous times now that I've woken up with a glo-worm teddy pushed up against my chest thanks to him. I'm so lucky to have such a caring little man.

My little lady is younger than her brother and doesn't understand the same, but she's caring in her own way. Her hugs with mummy always last that little bit longer, and not always because I'm clinging onto her! I'm terrified that each hug will be my last one with her. I so dearly want her to remember how my arms feel around her, but I'm not sure she will... not when the last doctor I saw was predicting I have only 4-6 months left with my family.

Since getting this news, I've been trying to spend some time writing for the children. But where do you start? "Mummy loves you" - yes, of course I've written that. "Mummy is so proud of you" - goes without saying, but it's been written. "Mummy didn't want to leave you" - I'm making sure that's written into almost every line. But how do you even begin to tell your children what they mean to you? How can you make your own flesh and blood (or not, in my step-son's case, but might as well be) understand the intense feelings you have for them, and have had since the day they were born? There's just no way. I've done what I've been able to though.

And, of course, I have started other letters. For my dad I could write a book, but I've started with a few notes. Baby girl's daddy - that's been a tough one to write. It's done though. His is the only one that's complete. There's one that's been fairly easy to begin, but I'm not sure how it's going to end. The reason it's been so easy to begin, is because the start of it isn't much different to things I tell this person every day. And I know how it should end, but it's not easy. I'll get that one finished though, it's important.

I have a few other writings to begin, one or two more "in the pipeline", and one that breaks my heart... when I imagine him reading it... it's just brought tears to my eyes just thinking about him. My family and closest friends have done more for me than I ever could have asked, but this one particular person... I can't even begin to explain all of the sacrifices he's made for me. It's quite amazing. I find it embarrassing and humbling, all at the same time. I'm so thankful... I don't think I can ever repay him. I hope he understands what he means to me.

Anyway, I think I'm rambling quite a bit. I meant to tell you about the next step with treatment and how they're going to try to extend the predicted 4-6 months, but I'm tired now and this has taken me long enough to write. I'll have to come back another time and fill you all in.

Heartbreaker

This weekend was meant to be a bit of father/daughter bonding time down in Norfolk for me and my pops. Bonding, it certainly was... I don't think we've ever been closer or more similar than these past couple of days.

Saturday morning, dad had a heart attack. He's fine, he's going to be ok. But it was scary. We were on our own, just back to the cottage we were staying in after having viewed one house (dad's looking at investing in a property on the Norfolk coast). And it just happened. Dad had been feeling a bit off-colour all morning, and said he'd had a restless night, but he put it down to the time of year, and maybe he was picking up a bit of my baby girl's bug that she had last week.

I think I did everything right when it happened. I was terrified, but I stayed as calm as possible, called for an ambulance and followed the 999 operator's directions for how to help pops. The ambulance arrived really quickly, in hindsight, but it felt like an eternity.

I really thought my dad was going to die right in front of my eyes. Scared isn't the word.

It turns out it was only a "mild" heart attack (what a drama queen!), so dad's doing great. He's still in hospital in King's Lynn, and his partner is with him now - I called her as soon as we'd got to the hospital. It was only then that I cried... well, sobbed. J brought her straight over and stayed with us Saturday night (thank god - I was all over the place by then, and exhausted!), and then J and I came home last night and dad's other half is staying in a bed and breakfast near the hospital as long as dad's being kept prisoner ;)

Yesterday dad got really upset and was apologising to me and anyone who would listen... just like I do when I'm in hospital. I appreciate how annoying that is now! And he's climbing the walls to get out... we're more similar than I ever gave credit for.

So that was my weekend. It didn't quite go to plan, and I'm sure pops has a little road to recovery ahead, but he's doing fine and he's going to be just great.

Oh, and my radiotherapy treatment starts today - wish me luck!

The norm

I think I've forgotten what it's like to be normal.

Most people's response to that statement will be something like "...whatever normal is...", or "...no such thing as normal...", and I guess they're right. My response to that is that "this" - everything that's going on in my life now - isn't how I remember normal life being. Though I suppose it's becoming my norm now.

What's prompted me to feel like this? Someone has talked to me recently like I'm "normal". Everyone tiptoes around me at the moment. They're careful not to upset me; they go out of their way to keep me calm, not provoke an argument so I don't get upset; and I'm pretty certain that their poor little toes must be hurting from all the eggshells they walk on!

But just recently, these past couple of days, someone pretty close has taken a different approach with something not related to the illness. They've given it to me straight, just talked to me as they would have done 14 months ago.

I think I appreciate it. But, to be honest, I've become so used to being talked to "nicely" that it's come as a bit of a shock and I'm not quite sure how to handle it!

When something that isn't your norm becomes your norm, how do you handle the abnormal... or how do you ask somebody to help you deal with it, because it's probably their norm!

I'm confusing matters now.

I'd gotten [sorry, R - that word!] used to the nicey-nice treatment and was shocked by the bluntness of this person. Shocked into silence, in fact. Which of course came across as being "A Silence". It wasn't meant like that. I'm just not used to people treating me like "any other person" anymore.

I can't decide if that's a good thing or a bad thing. I know it's probably my own doing, because sometimes even the most nicely asked question can result in me biting someone's head off.

I need to get out of the mindset that I can use Cancer as my excuse for being sharp-tongued.

Anyway, aside from all the abnormality, radiotherapy starts on Monday. I've attended all my pre-radio hospital appointments, so I'm ready to be zapped! I hope I respond well to some musical notes being played through me... I wonder if I get to choose which radio station they tune me in to? I am joking... I know radiotherapy isn't really anything to do with music, but please allow me that little imagination...

I'll report back on Monday to let you know how my first DJ session went ;)

A fond farewell

I realise it's been a while since I last wrote on here, but fear not - I'm still around!

What's been happening in the last month...? A few hospital visits; crippling chest pains; a blood transfusion; realising that I can no longer walk without aid, whether it be my crutches, my wheels or an arm; planning a radiotherapy schedule with my consultant; making the decision to take no more chemo and have my Hickman line removed.

Almost nine months I've had that line in for... so I feel a bit strange now it's gone. It only got removed today, so I'm a little sore at the moment. And I feel like something's missing. I think I'd got used to it being there. And it took me so long to get used to having it in the first place!

The removal itself was straightforward and pain-free. I could feel it being wiggled to free it, and could feel it being slid out, but it didn't hurt.

And now... well now I can take my baby girl swimming, and she can rest her head on me while we're having a cosy snuggle without me having to move her to one side.

It'll be strange not having to tap her hand away from tugging on it, too!

I think it's a bittersweet farewell - I'm thrilled that it's gone and I can start to look a bit normal again, but I can't help thinking that by refusing any further chemo this is going to be the start of the end.

Who really knows...