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

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

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

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

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

Today we lost the Ashes 5-0 after a truly awful England performance. However I am so very glad I got to spend the last day of this Ashes series at the SCG with this boy, Mr Bunker.

The Ashes has been very much about the two of us since the year we were married (and named our tables after the Ashes winning team of 2005. (Oh glory days: England how I loved you then!)) and despite the fact we were completely spanked off the field in every test this series today was brilliant. 

Keith has been chemo free for three weeks now which has been great as he has felt much less ill. Very sleepy and generally knackered but well enough to sit in a box at the SCG which is something he couldn't have done a month ago. More chemo from Weds: feels like a bit of a prison sentence, but them's the rules, sadly. Following that possibly scans, we'll have to wait and see.

I took the above picture when we were waiting for the bus home at the very moment it occurred to me that Keith and I are unlikely to share an Ashes series again. That makes me feel very sad. Being with Keith at an occasion like this merely cements in my mind the nature of his person, and it is really a privilege to witness. As a fan he is passionate and knowledgeable; as an Englander he is critical yet gracious. A man respected by those in the field of sports journalism for his knowledge, nouse and enthusiasm, and I am still to this very day blown away by his sporting intelligence. I had one of those glimpses today of the man that is sadly mostly lost now, and although I am very sad writing this it was a wonderful thing to behold.

So anyway, thanks for NOTHING England, literally, you were an absolutely pile of shite. Five bloody nil! Awful. But real thanks the SCG (and those who got us there) for today. It was brilliant. X

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