The world is still good

A fair bit of news to share since the last blog post. Thank you for all your positive encouragement through what has been a difficult phase. While I was to some extent prepared for the possible physical effects of the radiosurgery, I don't think I really had any inkling of what it was likely to do to my mind and emotions to have massive amounts of radiation fired into my brain. That's been something of a roller coaster, so thanks for staying with me through it..

When I last wrote, I was about to go to for a consultation with the surgeon who had agreed to look at operating on the primary tumour in my lung. While part of me was keen to do anything to get the primary cancer removed, I had a number of questions about this. Surgery isn't usually thought to be the best course of action for cancers that have developed secondaries like the ones in my brain; Chemotherapy and Radiotherapy are generally thought to be less invasive and risky, if not necessarily quite so ruthlessly effective. However, by the time I reached the consultation, there was new evidence to factor in to the equation. The biopsy on my lung tumour had been sent off for analysis, and had turned out to be a rare genetic mutation that would respond well to one of the new cancer drugs. This was now being proposed as a better first line of treatment for my lung. If any new secondaries were forming, it would also treat them, unlike the surgical option, and it was less harsh and more effective than chemo. So  - I began the first round of treatment  last week - one simple pill to take at home daily. Meantime, I have been coming off the steroids which have been used to treat the swelling in my brain. So for the last  week it has been the war of the side effects; not quite knowing what is being caused by the cancer drug, and what is being caused by the steroid cold turkey.

I know I'm very sleepy; that my right side is struggling again with numbness and my brain is struggling to find words when I try to write. I know my hair is coming out, and my skin is coming up in a rash. I know my swollen face aches as though it's full of dental anaesthetic that's wearing off.  But as yet, no nausea, throwing up or diarrhoea - so it could be a lot worse! And I have had some treats this week to be thankful for. I spent the weekend in the kitchen baking, which was hugely satisfying.  I joined in with an Iona Big Sing  on Sunday afternoon at church, which was socially pretty tiring but very enjoyable. I had my first 'Keep Fit for Old Gits' class taught by the fabulous Linda Page which felt brilliant. I'm managing to walk the dog most days.

And best of all, now I'm not waiting for surgery, we can begin to plan for the next few weeks and months. A couple of short trips away. The concert we'd booked for my birthday. Treats not just for me but for Mike too, who so deserves a break.

The inside of my brain may well have become a scary place, but the sunlight continues to break in. All in all, the world is still good

Getting Real

http://www.bbc.co.uk/programmes/b05tr05b

I wonder if anyone else watched the BBC drama “The C – Word” on Sunday evening? Mike and I both decided we wanted to in the end, and over the last 24 hours or so, I’ve found the honesty and rawness of it has been a huge help for me in unblocking what I most want to express after this last  week post - radiosurgery. So after a night of scribbling at the kitchen table, time for a new post, I think.

It’s been a week when I haven’t really wanted to communicate, or probably better, when the idea of trying to do so has just felt overwhelming. This shouldn’t be a big deal, for goodness sake; but I have felt is as such. After all, I’ve been begging everyone to communicate about what’s been happening to me since February. What right have I got suddenly to go silent and hidden on you now?

I think the first thing Lisa Lynch (aka Sheridan Smith) helped me to realise through “The C – Word” was just how difficult I have been finding it to deal with what’s happening to my body; how hard it’s becoming to be ‘seen’ at all over the last few weeks. For her, the nightmare was chemo hair loss; for me it has been the swelling, bright red steroid face; the dribbling when I eat or drink; the swollen feet and ankles; the distended, wind – filled stomach. The extra weight all over.  The fact I can’t stop ramming unnecessary food into myself. It shouldn’t matter but it does and I hate it. I hate looking at others looking at me, and wondering whether it’s OK for them, whether the changes in me are making them uncomfortable.

And I hate the effect this has on those closest to me who have to manage the space in which we live. Another thing “The C – Word” brought out so well was the devastating effect of what Lisa was going through on her husband, suddenly plunged in to the role of carer. I’m not going to write about Mike or Ellie or anyone else for that matter, it’s not for me to talk for them; but I’m deeply aware of the cost this places on them, and that adds to the sense of guilt I feel.

All that has been bubbling under the surface for weeks now, but what has been particular to this last week since the treatment? The easiest way to describe it has been an “inability to communicate”; which I suspect most people have understood as finding difficulty either framing words or typing them – and this of course is part of the truth. It’s a return to the original symptoms that alerted me to the brain tumours. But it’s actually something bigger and more fundamental that that. Put simply and bluntly? I CAN’T STAND BEING ASKED QUESTIONS.

Questions at the moment just feel too much to process. I feel responsible for giving answers I can’t work out. I feel like everything freezes up inside my head. And my emotions don’t do what I expect them to do. I feel constantly like crying.

It feels a bit like being in a tennis match – a tennis match I’ve freely chosen to play, I have to say – and then realising I can’t return anyone’s service. Everyone thinks communicating is about forming words with the mouth or with letters, but that’s the easy bit. I can just about hold my racquet; the problem is hitting anything with it. And then I feel furious with everyone’s questions, and guilt because that’s so unfair and unjustified. I’m sure it ties in with the thing about being looked at too. I’m used to being able to gently bat things back to the other person’s court. But when I can’t return the ball, it just sits at my feet, and all eyes stay on me. It starts to feel as though nothing is able to function without me. That’s clearly delusional, so it starts the cycle of guilt all over again. And those who are closest get the worst of the irritation and bad reaction when they deserve so much better.

At the root of the irritation, I know there’s a concern for everyone’s kindness and love, which is why I go on and on about it so much I guess. I feel a huge burden to be sending back constant messages of thanks and appreciation. That can get exhausting. And if I can’t do it, I feel I should be chasing Mike & co to do it. I’m always a bit paranoid like this – fed by years of ministry guilt trips too, of course – but it hits new heights when the stakes are this high; when the kindness of so many friends is so real and deep and sacrificial. I so much need you all to know that I know that, and that it’s not you, any of you, I’m really irritated with.  Just as I don’t believe you are really disappointed in me, which is what I project on to you…

Would I have been able to express anything this negative this without Sunday night’s drama? I doubt it. Thank you Lisa Lynch, and Sheridan Smith. And, of course, the BBC.

And as for how am I doing now? Good thanks. A few weeks till we know how effective brain treatment has been. A couple of days till we meet Lung specialist to talk about the primary.  Everything’s moving forward as fast as it can.

Questions? Just breathe deeply, take them slowly. Easy really.

A Giant Leap . . .

Well, here we are - time for one more blog post before what feels like a giant leap into the unknown tomorrow. All the preparations in Preston seem to have gone well, and on Tuesday it's Stereotactic Radiosurgery day - 45 minutes of carefully focussed high intensity beams of radiation on the tumours in my brain. Will they be obliterated, shrunk a bit, or not really helped much at all? Who knows. Will I feel sick and exhausted afterwards, or back to normal in no time? Who knows that either. So it's hard to plan for next week at all, or to know what lies beyond it. I know the last few days I've been progressively more tired, and just recently there's been a little recurrence of some of the original language muddling and right arm deadness . .  so the steroids which have served me so well for symptom relief (whilst turning me into an even more moon faced than usual Telly Tubby) are beginning to struggle to keep the tide at bay. So - here's to Tuesday; the finishing line - or the starting line - or both.

Just in case it proves to be a while before I can write again, I want to tell you something about what I've been working on for ..... well, for a couple of years, now; but in a focussed and more intensive way since last September. Some of you know I'm writing what I think I can best call a novel, although novel isn't quite the right term for it, really. It's something I've wanted to do ever since reading Wolf Hall and being totally captivated by it. If Hilary Mantel can make us live and breathe and care passionately about Thomas Cromwell, I figured, would it be possible to do the same for Jesus? To write his story in such a way that it's authentic the accounts we have, and yet fired and fleshed out by the imagination? Could such a book make Jesus accessible, capture the reader's heart and mind; make her see what I see in him, what has drawn me to shape the whole of my life around him? Various people have tried this before, of course, so it's not a new idea, but I haven't yet felt really grabbed by any attempts that I've read. They can so often feel a bit "men in tea-towels"; locked in a past world, not really letting the imagination go enough to lift the characters off the page.

This idea stayed no more than that, an idea, for a long time, and then I found myself doodling a prologue, and an introduction, and before long,  I couldn't stop.  And last September, it felt as if my week had found a perfect balance and ordering - 3 days working at the wonderful Susan's Pie Shop earning a bit of cash, and two days disciplined (well, disciplined-ish) days at the library with Yeshua.  By the end of January, I reckoned I was about a third of the way through what I think the final project is likely to be. 

All this, of course, has been on hold for the past couple of months. But my excitement for it was awakened again last week by an encounter with Professor Kate Cooper, historian and author of Band of Angels - "the surprising story of early Christianity from the woman's point of view."

It was an event organised by my dear friend Anjum Anwar, with whom Kate was in conversation; a Muslim woman and a Christian one sharing their excitement about the way in which women have always shaped and transmitted the stories that keep their faith traditions alive, and continue to do so now. I travelled home from Blackburn with my head buzzing. Realising afresh just how much I'd love the time to finish my telling of this story which has so captivated my life. 

Why does it matter to me so much? Because this story, apart from being the best story I know, is also about what is truth and what is love and what is the point of being human, and those things matter to me more than life itself - certainly more than biological life. Having life threatening cancer doesn't make me cry. But listening to a young girl on the radio yesterday morning saying that because she was a Christian, she would be voting for UKIP as the only party "standing up  for Christian values"? That made me cry. Having life threatening cancer doesn't make me angry. But hearing  people in middle class, self - protective church ghettos talking of themselves as "proper Christians" because their children still go to church? That makes me want to smash things. I'm not sure I can even handle the term 'Christian' any more - like it's a badge of merit, something that draws a ring of inclusion round the clever smug few and leaves the rest of humanity in a different place. Jesus would never have merited the label Christian. And I'd rather not have anyone think I merit it either. 

Because what I want is what he had; where I want to be is on the way he walked. For twenty years I tried to function as a priest, and then it dawned on me that he - the one true priest - was never a priest. Never an insider. Never recognised. So I resigned my license. Because I want to be where he is.

So this novel, if its a novel, is also profoundly theological, profoundly about the nature of truth and reality and what the word 'God' might mean if it didn't mean one little figure slugging it out in an absurd Divine Pantheon, trying to prove he's better than everyone else in there. Which is the caricature we so often seem to present of Jesus, and of the prophets of other ways and traditions too. 

One of my favourite writers, Richard Rohr, gets this so beautifully . . .if I could sum up in a nutshell the Jesus whose story I long to tell, it would be something like this, where he describes St Paul's encounter with truth though Jesus:

  Paul never uses the word "Almighty" for the Divine, despite its common usage to this day. His image of God was of someone crucified outside the city walls in the way a slave might be killed, and not of a God appearing on heavenly clouds. Christ was not the strong, powerful, military Messiah that the Jews had been waiting for throughout their history of being enslaved, oppressed, occupied, and colonized.. . . rather, God consistently chose the weak to confound the strong.

Paul's view of himself, of God, and of all others was turned on its head. He had to utterly redefine how divine power worked and how humans changed. All he knew for sure at the beginning was that it was not what anyone expected. 

It takes a long time to move from power to weakness, from glib certitude to vulnerability, from meritocracy to pure grace. In Paul's letters, he consistently idealizes not power but powerlessness, not strength but weakness. It's as if he's saying, "I glory when I fail and suffer because now I get to be like Jesus--the naked loser God."  

The revelation of the death and resurrection of Jesus forever redefines what success and winning mean--and it is not what any of us want or expect. On the cross, God is revealed as vulnerability itself (the Latin word vulnera means woundedness). We ourselves grow through vulnerability and not through any need to posture, pose, or present.  Now only the humble will ever find God.

Until you understand that truth on some level, even if it takes until the later years of your life, you can't fully understand the Gospel. And I don't think most people do, not even most Christians. The egoic or unconverted self reads everything in terms of its own ascent, various attempts at spiritual achievement, the attaining of merits and rewards, climbing upward, performing for God, concocting my own worthiness game, and then pretending I am succeeding at it. It is all so futile and so unnecessary. Despite the immense freedom and permission of the Gospel, most of Christian history has been trying to run up the escalator that Jesus (and Reality) has aimed downward. This has produced many frustrated people and frustrating clergy. Yet it is so natural and even easy to go down the downward escalator.

Adapted from Great Themes of Paul: Life as Participation, Richard Rohr. 

So much more I want to say - so much more I want to write. But even more I want to live, this side of dying and beyond.

And here I am, weeks after barely daring to ask that my little lantern of Fragile Hope might last the night, watching it burning away steadily. 

It's just before 6am. And it's a beautiful day. The Sure Hope of Dawn is flooding through the window. 

Joining the Dots

When something big happens in your life, do you ever have the experience of suddenly seeming to hear it mentioned endlessly from the most unexpected of sources? I find it happens to me a lot. Sometimes, of course, I'm sure it's simply that your ear becomes attuned to hearing what it would in other circumstances simply have screened out. Sometimes, however, it's hard not to have the sense of being communicated with directly. What were the chances, for instance, of my turning on the radio in the kitchen for a bit of background noise the other day, and finding myself listening to a programme that described in detail Stereotactic Radiosurgery, the very radical cutting edge treatment I'm due to be having to treat the tumours on my brain in less than a fortnight's time?

The programme was called "Is cancer money well spent? " and it's well worth a listen - though you might have to be quick as I don't know how long it'll be available on i-player. The link is

 http://www.bbc.co.uk/programmes/b05pnsr8

As well as learning more about the 'cyberknife' treatment as it's sometimes called, I learned, as a result of this programme, that I am far more privileged to be able to access it than I had previously realised. I wasn't aware that - while it could clearly be used to radically treat a number of types of cancer - its use is currently largely limited, in this country, to the treatment of lung and brain tumours (the very ones I have) due to the limitations of funding. I also learned that to be half an hour's drive from Preston puts me in the very  privileged position of being in a part of the country where it is easily accessible. I learned that consultants frequently put in requests to have this treatment funded in the full heartbreaking knowledge that those requests will be turned down. I listened to the account of a mother in her 40s who could have been helped by this treatment being unable to access it, leaving her widower now caring alone for their daughter with special needs. I learned how in France, people are routinely treated  for all sorts of cancers with Stereotactic Radiosurgery with a remarkable rate of success. And I was invited to share the dilemma that those who hold the NHS's purse strings have to live with daily; just how do you allocate limited resources in the fairest and most effective way? When to say 'yes' to one person's treatment is always going to mean saying 'no' to someone else's? When the cost of drugs which can extend someone's life by a few months has to be constantly weighed against the provision of treatment that could save life or even prevent illness in the first place?

Over the last couple of months, I'm aware that a number of friends and family have expressed concern at what seemed like a lack of speed in getting treatment actioned for me. I've been touched by and grateful for that concern - especially as there was, a few weeks ago, a sense that we'd had a few administrative blips that might have unnecessarily held things up, and that is definitely something to be assertively zero tolerance about! But I've also found myself wanting to challenge what so many of us fall into especially where the NHS is concerned - a sense of absolute entitlement; the sense that if anything happens to us or to a loved one, it's our unassailable British right to expect the very best treatment money can buy and expect it without delay. Here I am, just 2 months after diagnosis, preparing for the very best treatment that could possibly be offered to me in less than a fortnight from now. How can we be anything less than overwhelmingly grateful for that?

Every day the news bombards us with stories of the funding crisis in the NHS, but when something happens to us or our loved ones we find it near impossible to join the dots; to realise that a funding crisis might just mean what it says - not enough money to do everything we'd like to do for everyone on the schedule we'd like to do it. And nor are we joining the dots about what it means to be victim of our own success - a nation where the exponential growth in average life expectancy means we're all going to become much more expensive to maintain and care for through our old age. The money's running out, people! A week back in February on Lancaster 's Acute Medical Unit was an education I won't forget. Watching more elderly, distressed people, many with dementia, arriving to be assessed than there were staff available to assess them. Than there were staff to keep them safe from climbing out of bed, falling, hurting themselves. Than there were staff to feed them, let alone listen to and reassure them. And that was only the dementia crisis.

So to everyone who's tempted to frustration by what may look like a lack of urgency when it comes to the care of ourselves or our loved ones, I want to say "Join the dots". We're in a crisis. This is not the NHS's crisis, it's our crisis, and it's about what we decide as a society are our priorities, and what we decide as individuals our own share of responsibility for our national priorities are. In the run up to an election,if our decision about how to vote is motivated principally by self interest as to our own tax bills, then the NHS will not be there for us when we need it. And if we think casting our vote for one party or another is where our responsibility begins and ends, then we're deluding ourselves. There is no entitlement to the best of everything just when we need it any more. If we want an NHS, then we have to take responsibility; make ourselves informed; campaign; fund raise; protest unfair changes; support the rights of NHS staff; care. Because once we lose the NHS, we'll never get it back.

Once you start dot joining, of course, there's no end to the sobering places it can take you. The excellent care I am being offered comes at a price, and that funding will not be there for someone else. I'm not beating myself up about that, but it's important I'm aware of it, and that it deepens my gratitude and my determination not to waste a second of the precious life I have, however long or short it turns out to be. Or again, the compassion we feel for the victims of tragedy we relate to easily comes at a price of dehumanising others we deem less important. It's beautiful to read about the Memorial Service for the victims of the Alps plane crash today in Cologne Cathedral, with candles and wooden angels commemorating each precious victim by name. It's chilling to have to  search the BBC website for any references to the 400 - odd, many of them children,  who drowned in the Mediterranean earlier this week as they attempted to flee from lives whose horrors we can barely imagine. There names lie, forgotten, with their bodies, on the bed of the ocean.  Is any of them less precious?  Any less worthy of a candle or an angel?

It's time we all began to join the dots.

A picture

Woke this morning with a beautiful image of what Fragile Hope might look like in my mind, which thanks to the miracle of Google Images I can give you a flavour of:

Every one of you who is loving, supporting, encouraging, praying me through these days is spinning a thread into the web, and together I think we're weaving something beautiful, which is catching and reflecting the sunshine of the dawn. 

Of course it's fragile - that's the whole point. Of course it's not built to last for ever - Fragile Hope is about that which is, necessarily, passing and mortal. But whether this Fragile Hope lasts for a day, or whether - like a spider's web on my wing mirror a little while ago that survived weeks worth of rain, wind, and a couple of trips on the M6 - it is being put in place for a long season, is in one sense not the important thing. This morning, it is here. And it is beautiful. And you are part of it. And the Dawn it is reflecting . . .  that's where Sure Hope is to be found.

A week of ups and downs, but mostly ups

It's been a week of ups and downs for Fragile Hope. Last Monday, the news of a second tumour in my brain was very definitely a down - although the absence of any evidence of spread of the cancer to anywhere else in my body offered a little bounce back. The possibility of radical treatment for the brain was certainly looking less likely, though. Since then, it's been a week of waiting - not made easier by some evident  difficulties in communication between the 2 hospitals with which we're dealing - to hear what the team in Preston who are responsible for treating the brain felt they might be able to offer.

Braced for the worst as we drove to Preston yesterday morning, it was wonderful to find ourselves driving home 2 hours later with better news than we'd dared hoped for. We felt almost instantly we could trust both the competence and the kindness of the Oncologist and Radiographer who will be working with us. They are keen to press on with Stereotactic Radiotherapy for both tumours in the brain, confident that the chances are it will produce significant improvement. Incredibly, those fragile little seeds of the word 'eliminate' have not been completely destroyed by the news of the second tumour, though they are tiny and vulnerable. And the icing on the cake of the next few weeks - no more waiting  for phone calls or appointment dates to arrive. My card is filled out with where I have to be when over the next three weeks - by which time, the initial treatment for my brain will be complete. I have a DVD to watch all about exactly what this treatment involves. I am fascinated by it; humbled by the fact that because I live in a rich, developed nation I can access it as if by right. Are British lives really worth so much more than Sierra Leonean ones?  Ugandan ones? That question's not going to go away in a hurry . . . but today, today, I will just rest in relief and gratitude that for me, here and now, this offer of treatment is an extraordinary and wonderful gift, and I am hugely thankful.

And now, off to clinic in Lancaster, to check that we're on the case with actioning treatment for the tumour in my lung, so that it can begin as soon as possible after the brain treatment is complete. After which, perhaps, a little time to pause, and reflect . . . .

A Perfect Day.

When I was first told on Feb 13th  that a tumour had been detected in my brain, my immediate thought was of the implications for the wedding of our son Jono  and his fiancée Amy, due to take place just 6 weeks later on March 28th. The idea that whatever was happening to my health might in any way overshadow the wedding, spoil the preparations, or - selfishly - prevent me from being there was horrifying. We've all been so united in being thrilled  by this engagement, and excited as we've watched Amy and Jono's plans for the wedding coming together. So as the weeks have gone on, it soon became a focus, a goal to aim for - that everything should be right for the wedding.

And it was. Not just right, but radiant, joyful, amazing, remarkably relaxed and unstressful . If I have ever lived an almost perfect day, then this was it. I am still basking in it, still full up with gratitude for the many, many wonderful people who made it so.

It was Amy and Jono's day from the beginning - they planned it detail by detail to be a celebration that reflected who they are, what their priorities are and what they value, and to let so much of the nonsense that often surrounds weddings be completely unimportant. Everything they could, they made themselves, or had artistic and loving friends make for them, Everything had a simplicity but a style and elegance to it. Every part of the service and indeed the whole day had significance, lightness and joy. They are two amazing young people and we are unbelievably proud of them.

We feel as though we not only have a new daughter, we have a whole new family. It has been such a joy that not just Jono but Ellie, Mike and I have been taken into the Bland family's heart in the way that we have - especially over the last few challenging weeks, and we are so thankful to them for that.

One of the most powerful messages from Saturday, though, is that 'family' is a term far from limited to those who are related to each other by blood or by marriage. We were palpably aware of a massive family standing around us. Amy and Jono's friends standing around them, and our friends and indeed the whole community here standing around us all. There were tasks I'd undertaken to do as part of the preparations that I couldn't fulfil,  They were simply lifted from me. And not just that, but done with a dedication and elegance and style and attention to detail that took my breath away.

Emma, Linda, Ann and Paul, and many,many others too . . . thank you doesn't begin to cover it xxxxxxx

And now, today, it's Good Friday. This has been a challenging week, but we've walked it not only in the company of Jesus and the Story that - for me - expresses the heart of reality more clearly than any other, but in the company of that same extended family who shared our joy so completely last weekend. Bonds like this cannot be broken; love like this knows no limits. We press on towards the joy of Easter.