Tuesday 30 December 2014

New Year's Invitation

There is a sense in me that I should write something today. This is the time of year, is it not, to review that which the last twelve months has delivered us.

I am glad in a way of the timing of all this. I am glad I am able to close some parts of this story today, tonight, tomorrow. I intend to leave the remnants of his illness, the dying, behind me, and actually the more time that passes the easier it is to let those parts fade. I'll never forget it, I'll remember the pain, but I can see more clearly the man who was my husband before the cancer. I am grateful for this - I don't need to remember him dying. However it has meant the pain of his loss has intensified. I miss him, in every way, all the time. I miss him holding my hand, kissing my head, laughing, smiling, talking on the phone, sleeping, reading to his children. I miss talking about the news, the sport, our ideas, what to have for dinner, whether we need to buy more toilet rolls. I can't talk to him about our children, our precious children, about the pain they are suffering, the problems they are having, the things they are saying, feeling, thinking. It is a physical pain I feel and it is in every bone, muscle, sinew, nerve and vein. 

I write this from Sydney and it is clear to me now how much more I have lost than just my husband. Part of me, it is safe to say, died this year. Such melodrama! I don't care. It feels very real. There is a heaviness to me now that was never present, not even during his illness. A spark, a flame that has been extinguished. However: the space where the flame was has been filled with something else, something promising and different and surprising. There is a confidence and a maturity and a purpose. It is all about the health and happiness of me and my babies, the future, the promise of further adventure. Let me quote something he wrote in the wonderful book he left for his children:

One of the most remarkable things I've found is that since becoming ill, yes I have plummeted the depths and still do regularly and am finding the whole experience incredibly distressing, but I've also had some of the happiest times of my life, which sounds perverse. I've always thought that your ability to feel is like a symmetrical waveform and that to be able to feel intense highs you have to open yourself up emotionally, to make yourself capable of feeling those intense highs; but by opening yourself up emotionally to feel the highs you are also open to feeling terrible lows. Being sick has opened me up again to be able to feel, as well as the lowest possible points, also the highest possible points.

This is how the Bunker girls will approach 2015: turning the curves of our lows into highs, then we will hold hands as we hit the lows again. It promises to be as tough as it will be spectacular: but as Keith himself articulated so beautifully, you can't have one without the other.

So I suppose this is my invitation, from us to you, to be part of it. I would love to think that 2015 will be as much about harnessing your energy as much as it will ours. It won't be easy, it will be hard, but if it involves us Bunkers I can guarantee it will at least be interesting. Thanks so much for all your love, support, friendship and help this year. Who's in for the next?

Saturday 6 December 2014

How they are

Last night I dreamt I had cancer and merely weeks to live. The single feeling inside me was fear for my daughters, for their future, their wellbeing and their happiness, nothing else.

I am regularly asked how the girls are, how they are coping, feeling. They are suffering terribly. Both of them have separation anxiety, a need to know where I am all the time. They are sleeping badly, having bad dreams, dreams about me, about Daddy.

My five year old has regular bursts of real upset; she has surgically attached herself to the silver heart that contains Keith's ashes. She says, it's not fair that everyone at school has a dad and we don't. She says, I don't believe you, I think he is going to come back. She cries properly, real tears of sadness, and all she says is I want Daddy. I want him to come and give me a kiss before I go to sleep.

My six and a half year old is angry, very angry. At school and with others she is contained, controlled, comfortable. At home she takes it out on me. She is abusive, verbally and physically, hitting, screaming. I get her to hit pillows, rip up newspaper, shout. We read books about death and she soaks them up. I tell her it's alright, it won't last forever. She writes her feelings down and keeps the book under her pillow. She made worry dolls from plasticine and talks to them at night. Then she tells me, she says, I am worried about four things. I am worried I will get sick and die, that Daddy will never come back, that great-grandma will die, that we will never go home. She means Sydney, she is desperate to go 'home', to the place where we were last where everything was OK. 

I have to be careful to not attribute difficult behaviour solely to the loss of their father: they are for the most part normal five and six year old siblings, delightful and infuriating in equal measure. However I am furious that part of the innocence has already been chipped away. Isn't that the greatest sadness in the world? When children have hope and love and safety ripped from them. Mine are a bit broken at the moment, but with time they will be stitched back together, and as Bunkers, they will be stronger as a result.

People ask how to be with them; be normal. Treat them like kids. Try not to overcompensate with things like sugar and presents (don't tell them I said that) and don't worry, they'll be ok, in time, I'm sure. 

Tuesday 2 December 2014

Import

Last week I uploaded all the photos from my iPhone for the first time since I acquired it in August. As I sat and watched the contents flick through on my screen it occurred to me how accurately the photos illustrate much of the last four months. So I've stuck them together and here you have it, a snapshot of the Bunkers from 2nd August 2014 to 26th November; the time we returned to the UK up to my birthday last Wednesday. Keith died on 23rd October. Big love X


Sunday 23 November 2014

Drunk

I am a bit confused as to the new purpose of this blog. Prior to Keith's death it was about his illness and its effect on us, what am I to write about now? I don't want to write about our grief. Why would I do that? It seems pointless to me to go into detail about how awful things are. Not least because I am regularly told grief is a 'process' that I must 'go through'; great, none of this is special or different, I am merely ticking boxes of symptoms like everybody else. Google those then; that's how we are.

No part of me feels like an individual. No part of me feels special. I feel like one of millions exhibiting the same predictable behaviour as everyone else. Everybody has their own shit, and it doesn't make us individuals. There is no comfort in this. I don't want to know about other peoples experiences of losing people, it doesn't help one iota. In my world and my universe nothing can help, not any knowledge from anywhere, no experience of knowing 'it will pass'. No it won't, my husband died, nothing can help.

I'm special to my kids, I'm special to my mum but mostly I was special to my husband. Now he's gone, there is really nothing special left. I look at other families of strangers in the street, families of four and think, no, this is not fair. I imagine they look at me and they can tell and they breathe a sigh of relief to think it happened to someone else and not to them, and then the dads reach for their daughters' hands to cross the road, and I think this is not fair. I look other men and I think, my husband was a better father than you, he was a better man than you will ever be; this is not fair.

All this anger, all this pain it's 'normal', it 'will pass' and change into something 'different'. I don't care. I don't want to be normal if this is how it feels. 

I am not looking forward to the build up to Christmas. People rush around me buying presents for loved ones. The intimacy of being given presents by one's partner is on the long list of things ripped away from me. The superficiality of making it all about the kids feels plastic like the very presents they will receive. I imagine I will do much the same as I did last night: drink too much wine and send attention seeking messages from the phone that is permanently glued to my hand, my desperate connection to the outside world. They should add that to the list of grief symptoms: gets drunk and posts stupid pictures on Facebook. Then people will just think, oh it's ok, she's a grieving widow...nothing to see here. It's normal.

x

Thursday 13 November 2014

Three weeks on

It is only three weeks since Keith died. It feels like an eternity. People tell me time helps, time heals, but I can't believe that. The more time passes by the further away my husband becomes: I don't want him further away. Time can't heal, it can help deal with the sadness, help build the armour to get from day to day, time can mend, but it can't heal.

Darcey in her six year old mind said to me yesterday "It is going to be a really hard life for us." She means, the pain of missing Daddy is going to be always with us. She sees it.

His ashes came home this week and that did feel wonderful. The girls have their silver keepsake hearts with a sprinkling of ashes sealed inside. You shake it, you hear him. They hold them, kiss them, take them to bed. They talk to them, show them things. They took them to school to show their teachers. It's good, it helps, but it brought with it another layer of rawness, another layer of realisation of never as a reality; the never coming back.

"I want Daddy." 

"I wish he would come back."

I laughed when I carried the tube of ashes back into the house. It is so heavy! I never expected it to be so heavy. It has such weight, such presence, I was laughing to myself, it is so funny. So Keith, to be still so present. It makes me smile.

We drift along with our routine keeping us on the rails. Too much to think about, too much that distracts.  But still many rules broken: more dancing til 9pm, more pizza in front of the TV, more newspapers, coffee and music. I crave space and solitude and sleep, then people and exercise and air. I don't sleep, not really. It is too quiet.

The mind wanders to dangerous places...what would I do to have him back for just a day, an hour? Could this possibly be just a terrible dream? Dangerous places, dark, hard places. There is no hope in those places.

The good things keep coming, the silver linings. Friendships are strengthened, enhanced: more confident, real and honest. Still the words about Keith keep coming, all of them powerful. He was a man of integrity, he had great energy, he brought such substance. Strong words.

We're alright though, really; we're a team, we're Bunkers, we always will be. The now is terrible, but some of it will pass. We carry on because we have to and because we can and because we want to. We will always stand for love and integrity and very good parties. 

But we miss him, very, very, very much.

with love
XXXX



Sunday 26 October 2014

The final ABC interview

Keith died on Thursday 23rd October. Here is a radio interview I had with James O'Loghlin at ABC702 Sydney which ties up the series of conversations with Keith.

Big love xxxxx

https://soundcloud.com/bunkertron/abc702-sydney-26102014

Monday 20 October 2014

Where we are

When one of our many nurses visited us on Saturday she quietly gave me a gentle, but very salient reminder: every day is precious. This is where we are now. We are in Keith's final days.

It was not just the physical changes that made this clear, there was a subtle restructuring of the support around us, gently, quietly. A couple of nurses coming every day, regular phone calls, extra medication to have in "just in case". A nudge to me that I might need more help soon, can you have some extra help with the girls perhaps? 

The deterioration over the last week has been swift and destructive. No longer is Keith able to come downstairs, he is too weak. He has oxygen to help him breathe. He struggles to walk from room to room, we've started using a wheelchair. His weakness is intensified by the weight of his legs and abdomen, full of fluid and hard to move. I can encircle his upper arm with one hand now, the muscles almost seem to disintegrate beneath my fingers. He has fallen twice; he can't be left alone for fear he falls again.

Yet physical deterioration is relatively easy to deal with compared to watching him lose his mental capabilities.  This is the saddest part. He has become confused and unable to communicate properly. His thoughts are for the most part jumbled, surprising, remarkable. It makes him angry sometimes, scared sometimes, but for the most part it is OK if I tell him it is. It is quite fun sometimes, too, the randomness of the confused brain. He can still talk about football with complete clarity, as if that part of the brain is unaffected. His love of sport is quite clearly going to be with him until the end. Is it that at the very end of our days, we will all show our true colours in this way, when we are reduced to knowing only the things that matter most? I see Keith now stripped of the outer levels of his mind, reduced to his very core, and for him it is made of love, humour and football. He is immensely affectionate, still very funny, and still desperate to see Manchester United lose. 

The underlying thread to all this is not lost on him though. Take yesterday: he was telling me that if you want to survive riding into a Western town with cowboys you have to be the fourth rider because that one never gets shot. All well and good, I thought, I'll bear that in mind for next time. Then in a heartbeat, in the next breath, the cloud lifted for a moment and he said:

"Sometimes I think I see things, here. Sometimes I think I see my soul trying to leave the room." He started crying, he hasn't cried in a while, I had begun to think he was unaware of what is happening to him. But no. 

"I wonder if that's what it'll be like. I'd settle for that, my soul just leaving the room. That sounds nice."

He says he loves his Mum, his girls. He says he loves me.

I am sorry if this is hard to hear or if it is too much information. I have never experienced death before and so really I am just telling it how I see it, right now, at this moment. All I can be is here for him now, gently absorbing the confusion, giving the randomness of his self a safe place to be. We are doing it to the soundtrack of 5Live Sport, Match Of The Day and 6Music. We are doing it together, all the way, to the end. 

Thanks for listening, thanks for the comments, for being there: you're awesome. Kisses xxxxx





Monday 15 September 2014

What he says

This is how it goes.

I say, I think I've changed my mind, I think I want an indoor palm tree instead of a suit of armour. He says, get two. He says, this house, it feels good to be in this house. He says, I can move from room to room, be in each one so easily: there are high ceilings, big windows. I can be in this house, it's a good house, it's good we're in this house.

He reads messages, emails, from old friends, new friends, friends he hasn't seen for a long time. He cries when he reads them. He says, I always wanted to be that person, who changes a room when they walk into it. I never thought I was, I never believed I was that man. He says, I realise now I changed peoples lives. I see how much of an impact I had on some people, they tell me I made that impact, they tell me I changed them. He says, I feel really proud of that: that's what I achieved, that's what I did and I am really proud of myself. 

Outwardly he shows little self pity; inside he crumbles. He says, why me, why my lungs? He never smoked - never drugs, no cigarettes. His breathing is becoming more laboured, he struggles for breath. When he sleeps it is shallow, older. The cancer, it is talking hold of his lungs. Stairs are hard, walking a struggle. He doesn't go out, much. He stays in, he moves from room to room. It's too hard. 

He says, what happened to me, what happened to my body? His abdomen is distended, inflated, his legs and feet swollen, painful. His clothes don't fit, his beautiful shirts, all too small, too tight. His liver has been taken over by tumours, it is dying, it can't cope. He says, I wish I had taken more risk. He means physically, he means more than just driving too fast and riding horses in Patagonia. He means, when I had a good body, a functioning body, why didn't I take more risks? He says, I see people doing that in photos and on television and I envy them their ability to take that risk. He looks in a mirror and he is disgusted, distraught. His dying body.

We talk about his funeral. He says, make it for the girls. He says, make sure there is no black, don't scare the girls, absolutely no black. He tells me who he doesn't want to come. We joke about his funeral. He thinks about it, he is producing it, he cries. He cries a lot.

The girls say, is Daddy going to die today? When is Daddy going to die? What will happen when Daddy dies? Darcey asks, does Daddy have to die? Florence says, I don't want to talk about Daddy dying.


He says, when I'm gone you're going to have to be strong, and when you're not feeling strong, put on a suit of armour, and pretend to be strong. He says, you can do anything, you have so much opportunity. He says, you are amazing.

He says, when I am gone, you must teach the girls, you must show them there is so much good in the world. There is so much beauty, so much wonder. He says to me, don't be scared of being happy. Don't be afraid to be happy. Seek happiness. He says, celebrate the good. Strive to be happy. He says, it will be hard to be happy but there is so much to be happy for. He says you have so much of your life to live, so many wonderful people around you. Don't be scared of being happy. Be happy. He says, celebrate the good, you and the girls, seek happiness.

I say, I will, I will do that. I will celebrate the good. I will strive to be happy. We will do that. We will do it for us, and we will do it for you.

That is how it goes.

X




Monday 1 September 2014

Keith's latest radio interview

Keith's been giving regular interviews to ABC Sydney and here is his latest, in his own words.

https://soundcloud.com/bunkertron/keith-bunker-abc-31814

xxxxx

Thursday 21 August 2014

Some bad news

Hello friends. A difficult one, this. Keith's condition has begun to deteriorate quite rapidly and yesterday the oncologist told us he is looking at having only weeks left. Whilst not a surprise that we would reach to this point it was still very much a kick to the stomach. We're OK though sort of: desperate to move into our new house next week when our furniture arrives. 

We of course expected this would happen one day but I must admit I didn't think it would happen so soon. Still, the signs have been there over the last week and we both knew something had changed. Now I suppose we are very much operating day to day.

For your records our new address will be:

Moray Place
Edinburgh
EH3 6DS

Visitors are always welcome.

I would have preferred to impart this information to many of you in person; be assured I feel your love.

Peace out friends

xxxxx

Friday 15 August 2014

From the North

Hello friends and greetings from Edinburgh, capital of Scotland and now home to the Bunkers for an indefinite period of time. I'll start this with bullet points because I am very tired. In the last two weeks that we have been here...

1.....we have signed a lease for a property in Moray Place in the New Town area and we move in a couple of weeks. It has big windows and high ceilings and feels like a lovely place to just 'be' but more importantly

2.....I have worked out where to put a potential suit of armour, you think I'm joking, I am not even joking.

3.....Keith has established medical care through the rather conspicuously named Edinburgh Cancer Centre so he has someone to call and somewhere to go and it's ten minutes up the road.

4.....the girls have started at Stockbridge school (yes it's early but that's how it works here) and they seem sort of ok ish for now but then they're new kids and it's a small school, it will take a little time for them (and me) to settle in.

Points 1, 3 and 4 were all very, very, very hard and in particular point 4 almost broke us. BUT it is all sorted now and I won't dwell on it. One thing I will mention, however, is that in the depths of those moments when circumstances had driven me to question what the hell we were doing and wondering how the hell things were going to work out it was nice to know (as I now do, as I have learnt) that things change, stuff happens, and IT WILL PASS. Regular pain and stress remain but then we all have that sort of thing, that's called LIFE.

The kids have been tough to handle at times and I'm fairly sure I haven't been handling them properly at all. Darcey in particular has been quite angry but I don't blame her in the slightest. Their anger makes me very sad. Until we move into our new home in a couple of weeks I don't really feel we can establish a proper routine so I guess we'll have to sit it out until then. It will pass.

Keith has been and remains to be quite poorly at the moment. He sleeps a lot and finds doing things pretty hard. His new doctor has taken him off the drugs for his liver cancer which will hopefully make him feel less fatigued, but conversely he struggles mentally knowing that he is not having any direct treatment for the cancer. He is finding it all very hard and is feeling very low. He also seems to think I am joking about the suit of armour. That will cheer him up!

Don't worry: we are still having lots of fun. The girls and I practically tore up the Edinburgh Festival in the first week we were here (including Florence's first ever stand up performance in a packed Comedy Club, she went down LIKE A PALACE ON FIRE), the girls have developed a devotion to the art of puddle jumping and I have been to John Lewis three times already. I think the modern term for this is #OWNINGIT.

Standby for photos of my cupola. 

Kisses xxxxxxx

Monday 28 July 2014

Goodnight/Goodmorning

SO it has come to pass, the last night in Australia and we end it where it began, in the same hotel looking at the same view but pondering it from a very different perspective. 

The last month has been nothing short of complete hell. At the risk of sounding melodramatic I think it has been the hardest month of my life. Keith returned from Brazil happy that he went, but recently he has become more sick and more tired with new issues with his heart so that's all been quite hard and very horrible. Plus his hair is falling out as it did during the chemo and that sucks, but at least as he put it he'll "start looking ill again" (not looking ill can confuse people; looking ill saves a lot of explanatory time and effort).

I am quite honestly utterly terrified about what lies in store for us now. It is almost beyond comprehension, so I am going to avoid comprehending it at this moment, I've a 24 hour flight coming up in which I've more than enough free time to attempt to comprehend quite what the hell we're going to do. Feeling physically and mentally broken doesn't help (a Qantas gin and tonic might though).

Two things for you Sydney: 1) thank you for the fricking awesomeness - to a (wo)man you are extraordinary. 2) I am only a 24 hour flight away: if you are going to be throwing any good parties be sure to give me enough warning.

One thing for you Edinburgh: I hope you're ready for an adventure because goodness knows you are going to get one.

Here are some pictures from the last two years. See you from the northern hemisphere.






Peace out friends XXXXXX






Sunday 13 July 2014

small world

The world is a small place, seemingly, as Keith is currently in Rio ahead of the World Cup Final: the actual World Cup Final, IN RIO. I am so very glad he has gone; he was incredibly anxious about the whole thing. It was only ten days ago he had to be admitted to Emergency again but as there is always some sort of silver lining with these things he subsequently had tests on the condition of his heart and lungs and was given the full go ahead to travel. So there he is, in Rio, with one of his best friends, struggling of course but on the whole having a great time. AT THE WORLD CUP FINAL. I am so proud of him.

We Bunker girls remain here, in Clovelly in our big empty house. Our furniture was shipped last week to get a head start on the long journey back. We're OK, but you know, everything is quite hard. I have to be brutally honest and say that when Keith is not here, be it because he is in Brazil or in hospital, and it is just me and my two girls, I start to imagine I feel something of the loneliness and heartache for what it might be like when he is not here at all, and it is horrible. It's similar to what I think I wrote about a long time ago: how everything has so much extra meaning now. Nothing is light and easy, everything is serious and extreme. So when Florence says "I miss Daddy" it's as though something has sliced through me because she means it and it hurts her and oh, I don't want to think that far ahead. For the record Florence is also very annoyed she too didn't get to go to the World Cup Final but has been palmed off with the promise of watching Leeds at Elland Road and somehow, just somehow, she is content with that thought. 

Our flights are booked and we'll be back in the UK on the 30th July. We have absolutely no idea what we will be doing. We have no house, school or plan of any sort (other than to move to Edinburgh) and as much as I know everything will work out fine for us, I am running out of the energy to say that everything will work out fine. I am sick of saying "oh, you know, everything will work out fine" because even though I know it will, I also know there will be serious amounts of effort required to get to that hallowed fine stage and then in reality, everything's not really fine. But it could be worse of course, and we will have the priceless "help" that everyone keeps telling me will be "really helpful" and it will be great, I know it will, I don't want to sound as though I don't think it will, I do! But oh, the weight is just crushing. I worry about the kids of course, not in terms of the move but of everything else. They're staunch little things but have been being extra needy recently; perhaps its something to do with the fact I have shipped all their toys off to Scotland. That would probably piss me off if I were five.

There is definite sense of excitement as we set out on our next adventure, and it will be quite an adventure. I am still very sad to be leaving but I take a great deal of love, laughter, confidence and above all friendship back with me and that is really all I need to say about that.

When I have any idea of what on earth we're going to do next I'll let you know. Standby.

Lots of love in the meantime, and here's Keith with some Brazilian wall art.

xxxxxx


Thursday 26 June 2014

Update

I've been trying to write a proper blog post but I can't seem to get the words in the right order so you must contend with a sort of embellished Facebook status update. 

We're moving back to the UK at the end of July. It will be easier on numerous levels and I will be able to stop work for a while to look after him and the kids. We're going to move to Edinburgh because why the fuck not; we're not going to be working so may as well live somewhere different, interesting, brilliant and hilly. His care will be managed initially in London and our furniture ships next week.

Personally, selfishly, I am devastated to leave this place. Without wanting to offend anyone/thing/location I don't want to go.  I want to talk about how I feel but everything's too fucked up right now for me to find the right way of doing that. For the moment please accept I am quietly devastated to leave, but also I do see there is much to look forward to. I refuse to be that person who sits in the past, so I will look for and find the silver linings. But if you needed evidence of me being beaten by the cancer here it is.

Keith is ok, taking the new drugs to manage the tumours in the liver. Continuing to approach everything with remarkable grace and gratitude. Hopefully also going to the World Cup Final, yes you heard me correctly, because he can and why wouldn't he? Standby for those updates, they'll be the good ones.

Love always, peace out, stay with me. 
xxxxxxx





Saturday 7 June 2014

"The Fight"

Hello, friends. It has been a while since my last post: in truth, not much has really happened since 22nd April. Since returning from our Europe trip Keith has been managing a new programme of medication allowing him to be much more active day to day. This has been a breath of fresh air in lots of ways, with him more able to look after the kids while I am at work and have enough wherewithal about him to actually start feeling bored from time to time. It's probably the best he's felt in a year and indeed it is almost a year since he was initially diagnosed with the cancer. This is a milestone and a half - truthfully we didn't think he would make it this far. So he's living a more normal existence and that for us is really quite a great thing. I'm so proud of him for how he is managing himself through the pain and fatigue. And he also bought a really nice car, which is bringing the sort of happiness only expensive material goods can bring. It is a Bunkerly-overused word but he is an absolutely superstar. 

However.

Since the beginning of all this I have been very vocal about how much the term "fighting cancer" pisses me off. I never understood it, I took it quite literally as the fight against the tumours and the cells and the disease within the body. What nonsense I thought; how ridiculous to think that with the right attitude we can kill the multiple tumours my husband has devouring his liver. Complete bollocks! Don't use that word! Don't say that to me! Stop calling it a fight, it's making me angry!  

Recently though I have been thinking very long and very hard about it and I concede I was wrong. There is a fight. There is a fight against all the other shit. The mental, emotional, financial, familial shit. And I have to admit, sadly, I am losing that fight in many many ways. I am defeated. You've done it cancer, you've taken me down. Well done. You've ripped out pieces of me and I tried, I really tried to hang onto them, but they're all yours now and they always fucking will be. Oh I still have joy of course, joy and happiness and all those things you get from your children, work, lifestyle, etc: they're great and I will always love them, that, it, sure. But the fight? I am losing the fight. 

I don't want you to feel sorry for me: we all have our own shit that we battle daily, there's nothing special here. And I have so much! I live in Sydney! I have a nice house! Beautiful children! A loving and much loved husband! And I know that and I am grateful and happy for that. But the problem is that in losing the fight there's a new prism of thought and impatience that has showed itself to me, and I have started seeing holes in things. Like, I have all these incredible people desperately trying to help me and yet I think about the ones who are seemingly not giving a flying fuck. They're the ones who beat my soul down. They are few, they are unimportant really, but they are still the ones who bring me to tears. And in us living a 'normal' life at the moment I see so very very clearly all the things we used to have and do that I took very much for granted. The other day I said to Keith how I wish I could go back to when we first met, and do it all over again in exactly the same way. It was good then, it was better, it was living.

So anyway, consider this an update of some sort at least. To those who are trying to reach me, I'm sorry I'm not there right now. Hopefully I'll be back soon. Thank you, so so much for trying. I'll post a happy picture to finish with. Keith and his car. 

He's a superstar.

xxxx


Tuesday 22 April 2014

Streams

Two thirds into our trip to Europe and I find myself in the depths of London's Docklands furiously trying to coherently filter my thoughts so I can put down a record of how the hell everything is going. 

As you can tell from that sentence it is hard to explain how the hell everything is going, and nothing is very coherent. On the one hand we are in one of the world's greatest cities and it seems that its greatness is splendidly apparent to the kids. We've done some royal things, climbed up some stuff, been to the theatre and taken on a lot of tube journeys. They have enjoyed all of that, I think, if taken much of it in their carefree stride. If that sort of thing is the key to a happy holiday, then well, we've ticked all that and then some...and it has made us happy in the doing and the sharing. But on the other hand there is a huge, dark cloud of sadness as Keith sees some of his friends for the last time. Seriously, you could not make the horribleness of this shit up. It is awkward, exhausting and terrifying, but it is real, clear and present. And there seem to be so far never the right words to say or comfort to give. I have no idea how to deal with it all. I have no idea how Keith is dealing with it all. The doing stuff with the kids helps enormously, as it should, but then they go to bed and you just sit in a dazed fog of exhaustion, not quite knowing what to say or even if you did, how to find the energy to say it.

He's holding up physically but it is hard and he has been in a lot of pain.

It is glaringly obvious that there is not enough time to do everything we want to do. You could see it as a bit of a cruel reflection on our lives but I think even if we were here for twice the length of time we would still leave wanting more. Isn't that the right way to leave? Who the hell knows. 

I can tell you one thing though: one may have hits of pure joy embracing the occasionally divine architecture of this city, but the joy that can be felt from the love of people is unparalleled. Un-bloody-paralleled. It's like being at the centre of some sort of multi Ghostbuster-esque proton stream without the danger but all the unpredictability. Be it in person, through emails and messages, Facebook or massive piles of chocolate for my kids, it is the fuel source that keeps me going and gives us spikes of pure happiness. Know I hope I can give something back to each and every one of you. You are all fucking superstars. Oh emotion: how I love your swears.

Signing off for now with a badly composited but obviously overpriced picture of us up the Shard.

Lots of love xxxx



Wednesday 2 April 2014

Oh look! It's April.

Hello people. You join me on a beautiful autumnal Sydney day a mere five days before we head off to the UK for three and a half weeks and you will be not at all surprised to hear, dear readers, that I have done absolutely no preparation in any way whatsoever. Well, that's not entirely true: I have bought some new shoes, frankly what more do I need? Do not answer that question.

Preparation has been thwarted by two things: work (that's a good thing, work is good) and a rather sudden (or so it feels) change in Keith's condition. Following a scan last week we discovered the tumours in his body have started growing; this is the first time growth has been observed since we found out he has cancer and it came as something of a shock to both of us, and not a very nice one. I suppose we have become so accustomed to the different routines of life I didn't really expect anything to change. Well, I did, but I also didn't, does that make sense? Anyway, the medical professionals do not think the growth is related to the cessation of the chemo: the likelihood is it would have happened anyway. No one wants to tell us what this means, there is as of now no altered prognosis. However everyone seems to now be talking in a much more short term kind of way which is quite unnerving and they are asking questions that neither of us have thought about before, about things like having hospital beds in our house and what to do if Keith gets ill in London. It's important for you to understand that physically Keith this week feels no different to Keith last week, but when people are sitting in my living room (wonderful people, wonderful palliative care people) asking me directly if I have a plan of action for our trip away I am a little dumbstruck and it makes me feel weird and uncomfortable and all those sorts of things. He feels well enough to go and so for now, that's good enough for me.

Last week was not a very fun week, but as ever with our circumstances good things are emerging from the bad. Keith has almost finished his book of life and experiences and opinions that he will give to the girls. Palliative care offer the service and he now has Julie, his own rather wonderful biographer. Imagine if you can how much fun Keith has had talking about himself and then looking at pictures of himself and then talking about himself a bit more. I am very very happy he has done this. And that's a good thing. 

As a result of all this we are determined to take our trip back to the UK very easily indeed. Still the focus is on showing the girls some of the cool stuff we love about London, the place where they were both born. Also don't ask me about quite how excited I am about going to John Lewis (I am very excited). But this trip is also centrally about Keith. Without putting too finer point on it this is likely to be for him the last trip back to the UK. So therefore it is front and centre about seeing who he wants to see and doing what he wants to do (I keep telling him he really wants to go to John Lewis). But it is also about having FUN. Standby blog fans for how it goes, you can rest assured I will let you know.

I am off to avoid packing for a bit longer. Peace out friends xxxxxx

Monday 10 March 2014

Carpe Diem

So: we have arrived in March - autumn down here in the southern hemisphere, spring up there in the north. Today (11th) is Darcey's sixth birthday and she has merrily trotted off to school with a head full of birthday loveliness. These milestones are important in every family but for us they hold further weight as Keith sees them as goals, dates to make, to be alive for. Darcey's birthday was the first goal this year, then it will be his in May and then the World Cup in June. He has also said he wants to make sure he is around to see England regain The Ashes but I had to draw the line there and say with love darling that might be a bit of a push.

We are on the brink of Keith making the decision to stop chemotherapy. He's petrified about stopping, but in the same moment utterly aware that there is much more of worth to be achieved without the mental and physical debilitation chemo brings. It comes down to the good old mantra of embracing the moment, living in the now. For Keith to do that he has to accept the responsibilities for his decisions and actions. Unless he is told by a doctor to give up treatment (and this hasn't happened yet) it will be entirely his decision to do so, and making a decision like that requires strength that he has very little of right now. He is visualising it like this: to spend x amount of time living (potentially) a better quality of life or y amount of time continuing treatment when x is probably less than y, and never knowing what the difference is between them. He knows how I feel. I want him to give it up. I hate seeing what the chemo does to him and I don't want him to go through it any more. Yet I recognise so deeply how much it mentally supports him. There's no right decision.

On the plus side I have seen a subtle improvement in Keith's willingness to embrace time and the now. Given that it is likely he is stopping chemo we have started planning a trip back to the UK. We are going to take the girls to London and show them together all the places we know and help create some memories for them. We are going to take them to Disneyland Paris and watch them explode with joy meeting their favourite princesses (i.e. all of them). Keith has called this his "last trip" and whether it is or not is irrelevant, it's how we approach it that matters. We are accountable for this time we spend together, and health permitting we will squeeze every last bit of meaning from it. I don't think there's any such thing as wasted time but I do think it can be misused and if Keith is determined to have a go at living without treatment I'll be damned if I don't make the best use of our days together. Noone else is going to do this for me, we are going to have to do it ourselves. But you know me, I love a bit of a challenge, and if that means I get to take the kids to Buckingham Palace (we must get new dresses to meet the queen says Florence) then I think I might enjoy that.

Seeing as we've had some maths already in this blog I'm going to finish with some Latin to balance things out. Note excellent reference to wine: those Roman dudes totes knew how to party. Sending love from Sydney, peace out friends xxxx




Do not inquire (we are not allowed to know) what end the gods have assigned to you and what to me, Leuconoe, and do not meddle with Babylonian horoscopes. How much better to endure whatever it proves to be, whether Jupiter has granted us more winters, or this is the last that now wears out the Etruscan Sea against cliffs of pumice. Take my advice, strain the wine and cut back far-reaching hopes to within a small space. As we talk, grudging time will have run on. Seize the day, trusting as little as possible in tomorrow.

Horace Odes 1.11


Sunday 9 February 2014

Giving up

Hello. I can't write a funny blog today as I am too tired, you'll have to settle for facts instead (and therefore probably some half facts/conjecture too and why the hell not).

This weekend Keith has broken a little. He has been sleeping a lot and sleeping scares him: he finds it hard to tell if his body is slowing or if it is his mind that is pulling him down. It's been a while since the last chemo (it's only once every three weeks now) which means he worries more when he has pain/nausea/fatigue, and when Keith worries he really worries and makes himself feel even worse. I will hazard a guess that there's a bit of both going on (there's the conjecture for you) but it is wearing him down either way. When I have managed to drag him out he has struggled with being out...he is finding it increasingly hard to be surrounded by able bodied healthy people. There's no resentment there, none at all and this doesn't apply to our friends, it applies to the healthy runners/surfers/pub goers/dog walkers that surround us. It is so so very hard for him to see all these active bodies and know his is becoming less and less so. Mentally this has a huge impact. I see him at home as a shadow of his former self, and he knows it and it is breaking him. He has given up a little this weekend. Just ever so slightly, a minor degree shift has taken place, and we are in a tougher place as a result.

Kids are feeling it I think, but then that's inevitable. They are still astonishingly brilliant but I refuse to hide all the truth from them. We still talk regularly about dying and the things that surround it, like burial. Expressing this sort of thing in words they understand is a tricky yet worthwhile exercise. As I've said before, we don't talk about death enough in this society.

Gosh, that's all a bit heavy isn't it? On entirely the other side of the coin I am throwing an absolutely stonkingly brilliant party soon because as I have said previously I love parties and channeling emotional energy into balloon arrangements can provide remarkable results both for the balloons and my emotions. Keith continues to take great comfort and joy from the emails and messages he receives, whether he responds to them or not be assured he absorbs them. There have been some truly remarkable messages too - I fully intend to print them out and bind them together for the girls to read one day. So much love sent in words. Powerful stuff.

Yeah, not a great one this week folks. Below is a picture of Keith and Floz after I dragged him out on Saturday afternoon. The purple hat is pretty well known in this area and now famous on the internet, which is the whole world in fact, so I will now name this the #worldfamouspurplehat and I'm going to make it a thing. Love you the internet. Laters friends xxxxx




Thursday 23 January 2014

Lost

Warning: this blog may feel a little confrontational. Don't take it personally, it was bound to happen eventually.

I'll cut to the chase and inform you that the CT scan Keith had yesterday showed no change in the size of the tumours in his liver. I'm not going to speculate if this is good news or bad news, I don't want to hear analysis either way. He still has terminal cancer. What it does allow is some breathing space for the next month and that has made him feel a little better. 

How is he otherwise? Well, pretty shit. Lost. Lonely. Missing his friends. Desperately sad a lot of the time. New Year was very hard. Every day is very hard. I can't really dress this up this time...like I said: it's confrontational.

Our meeting with our Professor today made me think about how important language is throughout all of this. He has talked several times over the last seven months about odds; about how there is never a clear predictable outcome, we must just bet on the most favourable course of action and even then there is always the probability the odds may turn against us. It is fascinating listening to the words he uses and also recognising those he chooses not to. Interestingly it is only recently I have used the word 'cancer' in front of the kids, and even then that is only because my genius daughter read it out loud in hospital. In no way did I want them to hear negative connotations surrounding the word cancer (and this coming from a mother who regularly exclaims obscenities in direct earshot when they haven't put their shoes on after the seventh time of being told). But we have never used it. I won't go into the list of words and phrases around Keith's illness that make me angry because there is never any sense in getting angry at words. I'm not actually angry at the words anyway, I'm really only angry at the whole fucking cancer shit. NB swearing makes me feel better therefore is always fine. 

I have started using the word 'saved' a lot recently which is interesting. I find myself having moments where I feel I am saved by music/kids/work. Saved is the right word here rather than 'comforted' or 'consoled'. What is key is what I am being saved from, because really it is rarely anything scary or serious: it may be a moment of sadness, anger at a below average coffee or the intense desire to throw my Wacom pen at my computer screen - it's rarely anything really awful. I do feel it though, mostly with music. Meat Loaf saved me the other night, and I'm sure I'm not the first to say that.

So yeah, anyway, rant over. We continue to seek solace in each other and our kids and soft rock (that is mostly me) and we try to not lose our heads. It's really really really fucking hard. Thanks for reading, I feel better for saying it all. Sorry for swearing (well, half sorry). Peace out friends xxx