Buying Time

When I sat down to write this blog yesterday I was determined to compose a post with a more positive edge: Keith has had a couple of days recently where he felt well enough to do fun stuff like go to the cricket (arguably not that much fun given the state of England's batting) or Luna Park (roller coasters on chemo? What's a little extra nausea?) but that was sadly quashed yesterday after he had a consultation with his Prof at the hospital.

Now we have been coasting a little over the last few weeks, we've got into a pretty good routine of school, work and chemo and as a result I think we both lost perspective on the situation. Not a bad thing one could argue, as it's a lot easier to live when there's stuff to do, but the reality is we haven't really been thinking about what happens next. It actually hadn't occurred to me that there is only a finite amount of chemotherapy Keith's body can take before it gets overloaded with toxins. It hadn't occurred to me that there will come a point when he has to stop having it. But these are facts and they may make for an uncomfortable reality, and we were reminded of this yesterday.

Prof Goldstein has made the point to us before that this treatment is being given to "buy time" but I think we sort of lost sight of that a bit. We were joking a couple of nights ago about people saying "Yeah, you're terminal, but not THAT terminal, right?!?" and it's kind of funny because it's true.  Back in July when he was first diagnosed we weren't even sure he would make Christmas (Keith was disappointed to make my birthday in November as it meant he had to buy me a present) and look where we are now. But back in July we were also given an initial prognosis of Keith living for six to twelve months (we didn't talk about that to anyone and I am sorry if it comes as a shock) and I think we had managed to forget that bit. It is so very hard, living with this cancer and its treatment; every day can be a tumultuous struggle so it's not surprising really that some issues get lost as a result. I am glad we have had the reminder now: I wasn't so glad last night, but the truth is hard to take sometimes. He will have a CT scan in January to assess the course of action and whether the treatment has been in any way effective and/or worth continuing with. Before then we have Christmas, which will be hard enough in itself.

There are always more questions than answers in Beach Street, Clovelly these days and I will leave you with some to ponder. If you do not have to buy time, if you are privileged enough to own it, are you really getting your money's worth? Are you filling it with enough of what you need? I am still going to parties, because I like parties. I'm still working because it matters to me (and I am good at it). We can't, as the saying goes, "live every day as if it's our last" because that would just be silly; but can we do more so when that last day comes we feel incredibly proud of what we did on the way there? Did we, so to speak, have enough great parties?

I bid you a happy couple of pre-Christmas weeks: no doubt I'll post some pictures of the beach at some point (still weird).

Peace out friends xxxx

7th November 2013

Well. I'm highly aware it has been a while since my last update: the radio silence a result of too much and too little to tell you. 

It has been a tough few weeks, this new chemo regime Keith is on almost completely destroys him mentally and physically so it means that for two weeks out of three he is suffering. The physical debilitation I can take: the tiredness, sleepiness and nausea - none of these symptoms are new to us, the cancer was driving a lot of this sort of thing before diagnosis. What I struggle to take is the mental pressure it pushes on him, and the sapping of his very 'Keithness'. That bit drives me insane. He is still there and is still him, but it is so sad to see him effectively a shadow of his former self. I'm sorry to sound so bloody negative, but it's a truth. One thing that is helping him immensely is work. He's still doing some bits of writing for telly here, some bits of sheer brilliance, and when he does those he's himself again. He is the Keith I used to watch in the TV gallery, or in the radio studio, directing the talent and the content and making a thoroughly irreplaceable contribution. When I witness that it's fucking awesome. Hopefully he will be doing some writing over the Ashes this summer which will make him very happy and perhaps also provide me with some free tickets to go and swear at Australians, which, fundamentally, is the very reason I came here in the first place. 

Of course, the saving grace in all this is that the kids have not been phased at all by the changes in Keith's appearance or mood. They still very much think of him solely as Daddy, and that in itself recentres the Bunker family. Although Florence will tell you that she goes to school, Darcey goes to school, Mummy goes to work and Daddy goes to hospital, so you know, it's kind of normal now. But even so, to them he still is everything they want and need and that is good enough for me.

This is the first week we haven't had house guests for about two months. It has been wonderful having visitors. It has also been a huge distraction. This week has I think been much harder for not having anyone else around. It's certainly been harder for Keith, although he is definitely enjoying being able to watch NFL any time between 9 and 3. There is a rawness that comes from being alone that is a little hard to bear: much is heightened, less can be hidden. Perhaps that is not a bad thing, I don't know, it is what it is. Everything feels very raw sometimes and as much as I like the idea of feeling something rather than nothing I'm not sure I agree with the practice. 

So I suppose I conclude somewhere in limbo: Keith stays on a regular chemo regime of which we will not know the real impact for a few weeks. I know I have been utterly rubbish at replying to messages recently: make no mistake, I absorb every one. Thanks kids, speak soon xxxx

Things I sort of knew already but this week have been confirmed.

1. If chemotherapy were human it would be a London taxi driver (i.e. it gets you where you're going but makes your life HELL on the way.) 

Keith had his first bout of the new chemo this week, and guess what? It has made him feel like shit. Oh irony of ironies: that the treatment that might help fight the cancer makes him feel all kinds of awful. I won't go into details but it has such a detrimental effect physically and mentally. I took some photos anyway so you have a vague sense of what's going on.

First rule of chemo: coffee before chemo (actually first rule of Sydney is coffee before everything but doesn't alliterate: coffee before chemo much more catchy).

Second rule of chemo is always have at least one trolley

And the third rule of chemo is just sit back and take it.

And of course the best news is that he gets to have it all over again a week later (hint: sarcasm). It's really tough on him. It sucks more than a thirsty mosquito. However he does take it like a man and behaves on the ward much like classic Keith. The boy's a superstar, but then we knew that already.

2. Energy is everything. 

But of course it is you say! It's how we function! Movement! Joules and calories! But these last couple of days I've been thinking about the conservation of energy: that energy is neither created or destroyed, it is converted from one form to another. A lot of the sad energy I have I turn into happy energy, or at least I try to. It's bloody hard but can really pay off. If I leave the sad energy where it is it tends to convert itself to shouting which is a great release but usually results in someone crying. I've written before about harnessing the energy from the lovely messages and unfathomable support...on the ground I turn that sort of energy into even better things like parties. 

It's so tense and stressful though. Generally much too much negative energy milling around, being annoying and making general comments about how tired I look. Bollocks to you negative energy! I have lunch boxes to make and tv commercials to prettify! I've no time for you. This leads me on to the third thing I've reconfirmed this week:

3. Dancing makes lots of things much, much better

Really really really really. Music is a huge part of my life strategy right now but I'll bore you about that another time. I mean dancing! The expression of oneself through rhythmic movement! Works absolute wonders for the kids, really puts them in the moment, no matter what has gone before; and it just makes me feel bloody brilliant. 

It's also a really good reason to have more parties.

So in summary: more of the same, except more stressful and nauseated. Thanks again for the continuing support. You'll find me with the music.

KISSES xxx

Up and Down 

Harness the energy: that's how I signed off my last post and goodness knows I've been harnessing your energy ever since. Thank you so much for your wonderful wonderful messages. Please know that if you wrote, you helped. Sheer wonderfulness and a great deal of inspiration too. Thank you.

The week has been tough. Sadly there has been no chemo because Keith's bloods showed he was too at risk of infection and he was also hypercalcaemic. One of the side effects of Keith's cancer is that he has very high levels of calcium in his blood which can be incredibly dangerous if left untreated. Over the past few months he has been hospitalised several times because of this, and this week he was hit hard again. It had a negative effect on him mentally, he finds the high calcium sometimes very tough to deal with, and it makes him very sleepy. However our Prof at the hospital was overjoyed because it meant he was able to try out a new drug to bring the level down and keep it under control. (In the past our Prof has seriously suggested that Keith a) drink lots of very fine very expensive wine b) drive a souped up Porsche very, very fast through the Aussie outback and c) visit some of the more questionable establishments of Kalgoorlie WA to indulge in, well, 'extra pleasures'. There is a sadistic/hedonistic edge to our Prof: I adore him.) So we'll see how he goes and start the new chemo next week. In theory, at least (I've almost given up trying to predict what's going to happen. Almost. I'll still make wildly sweeping judgements about things like cricket and the weather but cancer planning? F*ck that.).

Many of you in your fabulous messages have commented on how strong I am. I take this as a compliment, thank you, but I challenge any of you not to behave the same given the situation. If there can be any silver linings with what we are experiencing right now then I can say I feel very 'in focus' at this moment: I don't mean focussed in the concentration sense of the word; I mean that the lens is very much focussed on this life, right now. In a way it's quite wonderful...I feel very aware of where I've come from and what I've learned and what I have within me to come through this for all our sakes. I also feel that a lot of our shit has been pushed out of focus because it really isn't important right now. Every moment is a 'moment' and as much as that means we are making the most of the time we all have together it is bloody exhausting. I will give kudos to the Aussie life for some of this though: they surely know how to make the most of their now, and the Aussie way of life has rubbed off on me for sure (its those Southern Cross tattoos that sway me. I'm a sucker for those stars).

I took my eldest Darcey for a walk through Waverley Cemetery yesterday. She has been desperate  to explore it for a long time and we had quite a lovely time meandering through the graves. It is clear that she as a five year old has no negative concepts about death or burial yet - she wasn't scared, disgusted, worried or perturbed by anything we saw - she was looking at the shapes, colours, words, flowers, symmetry, the view, all the lovely things about where we were in that moment. We were discussing why sort of graves we might have (I'd have a giant leopard print star: Darcey would have a big heart). Her acceptance of the nature of the place was highlighted by the grave of a two year old we found, one covered in hearts, stars, gnomes, fairies and colours. Although I couldn't tell her why the little boy had died, she seemed satisfied and comfortable that he had somewhere where he was 'loved' (as she put it). The philosophies of Darcey Bunker - very real and very in focus.

I will let you know how chemo goes next week. Also I will try and make KB let me take some pictures. I mean, why the hell would he not want you to see it*?

I saw Gravity today - let that be this post's physics reference. Don't let go. ETC!

Helen xxxx

* I can think of quite a few reasons, but YEAH WHATEVER sod those. xxxx

In Which It All Gets A Little More Serious

Hello there internet, welcome back to The Bunker Girls. It's been a while: I suppose we had the natural tailing off of things - waning enthusiasm, less of the new etc. However I am resurrecting the blog for rather different reasons now, and it's up to you whether you care or not. I know many of you really really do, so I'm going to jump in and see what happens, classic Bunk style. If you don't give a shit, don't bother reading any further; this is not for you.

Firstly an apology: many of you message me regularly for updates and I am sporadic at best in reply. Rest assured all of you that if I had the time, energy and wherewithal I would reply to each one of you individually. However I think we must accept this as the second best option, and the one which stands the most chance of happening regularly. Please please please don't stop messaging me, I thrive on your communication; also please feel free to leave comments on the blog or FB, I absolutely love getting any kind of message from you all, really truly. 

For the uninitiated the reason behind all this is that Keith my husband and the father of Darcey and Florence has been diagnosed with secondary liver and lung cancer (from a so-called unknown primary source). We have known since the end of June - it's been a fairly whirlwind existence since then. He's been having chemo for a few months now, but it's not been working as well as they (the powers at the Prince Of Wales hospital in Randwick, Sydney) would like so his chemo regime is changing as of next week. Not knowing the primary source makes it harder to target so there is an element of trial and error (albeit the most educated and probably the cleverest trial and error I have ever witnessed). However despite the fact Keith's cancer has not been staged (to us anyway) the chemo cannot be curative - it is terminal.

We're kind of OK ish in the broadest sense of the word. There is very very little point wailing and screaming and wondering "why him/why us" because quite frankly there is absolutely nothing we can do about it. I haven't the time to spare naval gazing and dwelling on it all: I've work/kids/house/life shit to deal with and if I spent the rest of the time feeling sorry for myself/us I wouldn't have any fun. It's not that I don't hate it, of course I do! But I won't let it take over any more than it already has. One of us has to attempt to remain sane through all this, and it's never likely to be Florence. Keith is, well, fairly crap. He feels really tired/sick/occasional awful pain and the chemo is pretty brutal and full of rubbish side effects and mostly just drains him completely. He will still work (very occasionally) but it's all quite a struggle to do anything. We have moved (which was fun - oh wait no it wasn't) but it means we have lots more space now for Keith to lounge around in the daytime, lots of lovely Sydney light and a view of Waverley cemetery, so that's been a good thing. Mostly though we operate within the bounds of the 'take each day as it comes' cliche because a) we have to and b) we have to.

The girls are completely awesome as always. They are very aware something is going on, something is different. There seems to be little point hiding anything from them, they are kids and will see straight through us if we do. Floz in particular enjoys a good old jaunt to the Oncology Day Centre (she is a big fan of the blood tests - she was named after Florence Nightingale in fairness). They know he has chemicals in him every so often and they know he is poorly so has to sleep lots (although he was already labelled Lazy Daddy so that's not much of a difference tbh). Sometimes it's the hardest thing in the world being with them and knowing how poorly Keith is, but then they will ask me to put Avicii on and want to draw rainbows and it's all fine again. They're kids, they ground us, and they are what will pull me through.

As it stands we're staying in Sydney. We have only been here a year, but it's where we want to be. Keith's treatment takes centre stage and at the heart we like it here. We're taking the laughter with the tears, and he is feeling SO MUCH LOVE right now. If you know Keith you know why: he's one of the best men you will ever have the privilege of meeting. He's certainly the best father my girls could ever want. There has been something of an outpouring from old/new/lost friends everywhere and it really makes him glow each time. It's wonderful from my perspective too, to see him moved by the emails and your communication. I will aim to update this regularly with all the news so you can dip in as you wish. Nag me for updates: if you ever want to talk message me and I will send you my mobile number. 

Time to sign off for now - I think this is as much as any of us needs on this occasion. I don't believe in fate or karma: I don't believe we live a predetermined existence, or that anyone or anything else has the power to define our lives. I believe you get out what you put in; I believe in hard work and the laws of physics. This is a thoroughly shocking state of affairs but there are as many highs in this as there are lows (and I don't just mean the morphine, although he is on that, and I am very jealous). It can't be changed but there are elements of this that can be embraced. Newton's Third Law: For every action there is an equal and opposite reaction. Harness the energy folks. Keep us smiling.

Signing off from No.1 Beach Street, Clovelly, Sydney.

Helen xxxx