A Choice

Lots of interesting comments and reaction to the whole subject of the language we use about cancer - thanks to everyone who's shared thoughts either in the blog comments or elsewhere.  Having now listened to the longer World Service programme that Andrew gave us the link for - http://www.bbc.co.uk/programmes/p01lf8vh - I don't think there's much I can add to the language debate at this stage.  If it has interested you, then that is the thing to have a listen to - fascinating stuff.

Here, wedding excitement is reaching fever pitch - my son's last day as a single man! The house is busy with arrivals, deliveries, people coming and going with errands and jobs to tick off lists. Dear friends are pouring extravagant love into ensuring that everything is as perfect as it can be; that anything I was down to do practically is  not simply covered, but more than covered, with amazing beauty and attention to detail. As the situation around my own health began to unfold - what is it now, 6 weeks ago? - my chief dread was that it would somehow spoil or upstage this precious wedding. But its effect seems to have been quite the reverse. I can't speak for Jono and Amy, or for the rest of the family; I shouldn't assume that it hasn't and isn't costing them an immense amount not to let my illness weigh negatively on things. But I can only say that it doesn't feel as if anything has been upstaged or spoiled. Quite the reverse. Whatever has come into our lives these last few weeks - though I'm certainly not pretending it's a visitor I or anyone in their right minds would choose- seems only to have made the wedding more precious, more joyful, more longed for, more celebratory.

I suppose this is perhaps another way in to the same question I was trying to tease out through asking questions about the language we often leap to when talking about cancer - and more, talking about the way in which cancer or any life threatening illness brings us up against the awareness of our own mortality.   Of course it's natural to react to such a visitor as a terrorist! Of course it's natural to want to have a gun in your hand to point at him, to send him scurrying back out of the door through which he so rudely burst in. Of course the sight of him, the thought of him, is enough to fill you with so much fear that eliminating him is the only thing you can think about. Of course  the first thing we want to do when he appears is fight him - or at the very least, escape from him.

However, for the first few weeks at least there are no guns available, and little choice but to sit down and wait in the terrain into which he has bewilderingly escorted you. But in the waiting, there is a choice. You can either sit paralysed with fear and anger, aware only of a monster threatening to take away everything you know and love. Or you can allow yourself to look at him.

And I have discovered that I want to look at him. I want to assert that this unexpected visitor might actually be something more than simply an aggressor. That this meeting even has gifts to offer, and I want to be open to them. I don't, actually, want to send him away without allowing myself to receive whatever his visit has to bring me. So far. . . in the midst of the shock and the horror and the wanting it all to go away .. . .there has been joy, depth, intensity of awareness, restoration of deep and precious friendships,  a heightened sense of being fully alive,  awe at the revelation of the connectedness that holds us in being, an overwhelming sense of the Love that I know as God. I wouldn't have wanted to miss those things.

After all, what's happening to me is far from unique. It's the one thing we know is universal. We all have to meet this visitor at some point - that's the one certainty we all share. My fragile hope that this is not his final visit to me is still burning, but whatever the outcome of that, he will pay me - and all of us - a final visit at some point. And when he does, the outcome can only go one way. If all I have done is fight against him, then my obituary will be a description of "losing my battle".

Believe me, I have no intentions of losing anything.

War - what is it good for?

As you've probably worked out by now, words are my thing. So I'm probably more than averagely analytical of the words we use to shape and make sense of our stories. And I've discovered that since the word 'cancer' has entered my story, there is a particular set of language that has come along with it more than any other. That is, of course, the language of fighting battles, waging war, and kicking the enemy.

I say 'I've discovered';  actually, I need to qualify that a little. Thanks to my old mate the lovely Andrew Graystone, I had my eyes opened to this phenomenon several years ago, when cancer was a living reality for him, but - as far as I'm aware, anyway -  not for me. He's written and broadcast his thoughts on the language we use about cancer and they're well worth a listen. I'd suggest getting yourself a drink and listening here before proceeding any further:

http://www.bbc.co.uk/programmes/b037v4gg

I clearly need to do a little thinking on this. Like Andrew, I'm basically a pacifist. War solves nothing, as far as I can see. I'm also committed to the way of loving enemies (even if I usually don't manage it), not "kicking their butts", as one of my least favourite Facebook memes of all time  urges us to do to cancer. I'm not sure I'm at all prepared for  the terrain I'm mapping out for this  journey to turn out to be a war zone. And yet . . . there is something there behind the language of fighting that is important. Holding on to fragile hope requires it. So I want to thank the friends who are cheering me on to battle, and who are battling for me and with me, because I understand - at least I think I understand - what they mean when they say it, and I need to be reminded that the journey is strenuous, and there will be conflict to face.

I wonder if I can find my way through the language to something more helpful, more true to what I'm actually experiencing? More to follow soon.

Sure Hope, Fragile Hope.

Life is rich with living parables at the moment.

As I was sitting last night contemplating the little lantern on my windowsill, this was happening beyond my curtained windows, just across the Bay in Cumbria:

http://www.bbc.co.uk/news/uk-31936513

Which expresses perfectly the dilemma I fell asleep wondering how to begin to try to articulate last night. I think I want to call it "Sure Hope, Fragile Hope."

I claim no credit for the fact that Sure Hope is such a felt certainty for me that - as yet - I haven't detected even a hairsbreadth's crack in its surface. It is a gift for which I am profoundly grateful. People might describe it as 'My Faith'. But that's a phrase that I think is fraught with potential misunderstanding, and  I'd like  to try to unpack it a bit. So I hope you'll bear with me for a minute.

My life has been shaped and motivated by two things. The first is an overwhelming love for and fascination with the story and person of Jesus of Nazareth, and the whole vast world of the Spirit which pursuing him and the life of what he called 'the Kingdom of God' has opened up before me. The second is a gruellingly love / hate relationship with the whole panoply of  'Christianity' and 'The Institutional Church,' which is the very imperfect vessel through which his story and his person have been communicated to us. And as soon as I hear that phrase "My Faith",  it immediately sets off alarm bells that somehow I'm being unquestioningly identified with that label, that Institution. I want to do what I can to silence those bells before they start ringing.

So here's what "My Faith" is not, for a start. It's not membership of an exclusive club that sets me apart from anyone else. It's not something that puts me in one camp and leaves my friends who do not share my allegiances, belief systems or opinions in another. It's not a security blanket which promises me  heavenly returns for backing a particular horse in some sort of stable of alternative Gods and Prophets. It's not an asset, a thing I can pop in my wallet along with my debit card and my driving license to help me deal with the real business of having a happy and successful life. And - please God this will not come as a surprise to anyone reading this - it does not oblige me to think I have the right to think or talk about any group of people as defined by their sexuality,their race, their gender, their religious affiliation or lack of religious affiliation, or anything else for that matter, as a 'them' about whom I should have 'views' or 'opinions'. Such things are anathema to the Jesus I know and love. Always have been. 

So if that's what "My Faith" is not, what is it? Well, let me try to unpack this phrase "Sure Hope" which has planted itself in my mind this morning. Sure Hope is the unassailable sense that I, and not just I but the entire universe, am in a safe place, a good place, in spite of a lot of bewildering evidence to the contrary. Sure Hope is a laugh of pure joy that always has the last word. Sure Hope is the amazing connectedness of things, constantly surprising me into realising there's so much more going on than we know. Sure Hope is being surprised by moments of revelation, when the sky suddenly rolls up and reveals the light that never goes out, holding our tiny little paltry lives in a vast tapestry, and immersing them in dignity and significance. (If you've never watched "Ashes to Ashes", they certainly got that bit right. There's a boxed set to invest in. Only if you can cope with seriously non - pc humour and language, though.) Sure Hope is what I see endlessly in Jesus, and is what keeps me in pursuit of him. But it is not the exclusive gift of Christians, far from it, Just as he is not the exclusive property of Christians. Sure Hope is the gift, I think, of Love - which He exemplifies, and the seeds of which are in every creature, every particle of existence.  

This Sure Hope - of which all of you who have loved or prayed or sent positive thoughts are a part - is carrying me, more than carrying me, as we embark on whatever this journey is going to be about, to wherever it's going to take us. I have no fear about it at all. 

And yet, last night, I realised - not for the first time but in a very particular way - that more is required of me than simply to be carried in my Sure Hope. Because my life, as well as being eternal, is also particular, and mortal, and fragile. And living its fragility, and facing the pain of its mortality, is a necessary part of being fully and properly human. Saying I'm not afraid of dying - which is, actually true, and I'm so grateful it is - is an enormous gift. But the real challenge is allowing myself to feel just how much I want to live. Just how much I want to keep on this side of death for every precious moment I can. Not just for me, but for the people who love me too.  

So - I rest in the Sure Hope. But I dare to ask for the Fragile Hope. And I accept the risk of disappointment. 

Mapping out the terrain

Waking up this morning in a place I could finally give a name to felt remarkably good. I know it's not a place I would choose to be, but it's where I am, and  now I can name it, I can begin to look around and explore the terrain.

And at the moment, I find myself to be in a room, which is considerably lighter than I'd imagined it might be.

Which is good - great - but also a little scary.

Mike and I often quote (well, I say quote - can't actually remember the line so it's more a paraphrase) a line from - I think - the John Cleese film Clockwise.  The essence of it is "It's not the despair that gets to me; despair I can live with. It's the hope . . . ".  That's certainly been proving true of the way I seem to have been handling things these past few weeks. It's been easier, for me, to block out everything except preparing for the worst case scenario - because then you can't have hope taken away from you. So I have cheerily been assuring myself that yesterday's news was almost certainly going to be of the 'there's nothing we can do' variety, knowing that left me in a place where disappointment could not strike.

Now, let's not get over excited. The news yesterday wasn't massively better than that. The hope that was there was tentative, and it was conditional. If tomorrow's PET scan reveals more tumours, then it's  a hope that will be very short lived. But it is, for now, hope. Hope that, if it survives the scan, and lives and grows, even holds the tiny seeds of the word 'eliminate'. A word I really hadn't allowed myself to contemplate.

So today's first challenge, as I survey the room I'm in, is to let myself look at this rather lovely but unexpected guest 'hope' which is sitting like a lantern, flickering away on the window ledge. And by hope, I mean very specifically, hope that I might actually survive this physically. I've got buckets of other kinds of hope, more of which later, all of the sort that, not being conditional on me surviving, can't disappoint me or anyone else. But this hope is risky. I want to take hold of the lantern, because let's be honest, I really, really want to live for as long as I can. I really, really don't want to leave a life which is brilliant and a family who are . . . well, I can't even begin to find words to say who they are to me . . . and friends who have stunned us these last few weeks with the depth of love they have poured on us. I want to grab that lantern and never let it go. But . . . I'm finding it surprisingly hard. And it helps me to say that.

Enough for tonight, I think. Bit more exploration tomorrow.

Let the blogging commence.

Having a diagnosis to identify what has been unfolding for us here over the past few weeks feels like a bit of a milestone - in a good way. It also feels like the right moment to rethink a little how to share things with our friends in a way that is open but not relentlessly in your faces, and allows you to 'buy in' to sharing this journey (sorry, hackneyed word, but it is a apt one) with us rather than having to unfriend me on Facebook if you want to avoid it.

 So - Mike has set me up with this blog, where I will indulge myself by writing and reflecting as and when I want to about what's going on, safe in the knowledge that if you're reading it's because you have freely chosen to. If you have, thank you. If you'd rather not, that is absolutely fine.

With that said, here is Mike's summary of what we learned today:

Today’s consultation has confirmed that Debbie has lung cancer and all the indications are that the tumour in her brain is a secondary from that. Secondaries are obviously serious, and further investigation will now take place to check it has not spread to any other location. Treatment options cannot be confirmed until after this is complete. However, if there are only two tumours, the recommendation would be for treatment by radiotherapy, which would reduce and possibly even eliminate the cancer.

We realise this may difficult news to receive, but for Debbie it is more hopeful that she was anticipating this morning. Another positive is that it is a slow-growing form of cancer, so it is realistic to think that Debbie will have time on her side. The doctor also assured us that there is every reason to believe that Debbie will be on good form for Jono’s wedding a week on Saturday and can even enjoy a glass of champagne on the day.

Later this afternoon, the appointment for the PET full body scan in Preston came through for this Wednesday, 18th March. So they're not hanging about. 

I think that's enough for tonight. I'll post on Facebook  when there are any new blog entries. Otherwise I'll keep Facebook for the other aspects of life. Thank you so much for being with us.