Parachute

Been a good few days. Dexamethasone, my wonder steroid, has got my symptoms under control again so I can speak and type not too badly (and I've got plenty of time to edit!) It is also responsible for waking me up around 3am each morning full of the joys and desperate to write! Mike says it's a bit like someone poking my creative right side brain with a sharp stick . . .

Much of what I'm writing is poetry that's either for particular people, or isn't quite right to share at this point. I thougt I'd like to share this one though. It is specifically about us, but I thought it might just have wider relevance too . . .

Radio therapy starts today. Anything could happen! We'll keep you posted. Much love everyone.

PARACHUTE

My wise friend tells me

It takes a whole family

To manage a grief.

You don’t come to the table because you want to,

But because you have no choice.

This is your table, and you are welcome.

Once you are here

Just stand where you find yourself,

And offer what you have to hold,

And look neither to the right nor to the left

And pause.

You can put your gift down now.

It’s very important not to rank it, compare it, hide it or

Waste time judging it.

Believe me, there is no time to waste.

What have you brought to the table today?

If you have brought Trust, put her down.

Don’t worry about Anger across the table.

She will take the space she craves.

Faith? We need her.

Someone else will bring the Fear we also need.

Confusion? Plenty of scope for her here.

Don’t let Clarity try to sweep her under the carpet, will you?

Pain demands to kick and scream.

Patience can wait for her for as long as it takes.

Denial is hard to let go of, but we will all

Be the poorer for pretending she’s not here.

Perhaps you won’t even know what you’ve brought, or how to name her.

Just lay it all down.

You and your gifts are all welcome.

Keep your eye trained on your gift

And the one for whom you offer it.

She sits in the midst of you

And she needs you as never before.

And when you’re ready

And you sense you’re all ready

You’ll find the cloth that covers the table is a parachute.

Bright and vibrant

A place for you held safe between the others.

Now grasp the silk.

Raise it high

And let your gifts pour

On the one who needs you as never before.

Let your strength lift her

So she will not catch her foot against a stone.

Bring her safe landing.

As you bear her up on wings like eagles.

And know her joy

As you watch her soar and fly.

5^th October 2015

A lot to absorb.

It's been a busy couple of weeks since the seizures a fortnight ago. Detailed scans followed by a long and helpful time with my consultant on Friday. 

The scans have revealed two things:

First, the stereotactic radiosurgery on the 2 adjacent brain tumours back in April has killed the central tissue. It has not, however, killed the tissue around the tumour edges. Therefore the swelling around the larger tumour, which causes the ‘stroke like’ symptoms on language, use of her right side, exhaustion, loss of balance etc, has become worse. More steroids needed to contain it.

Second, and most daunting, the detailed scans have revealed that in the last few weeks a number of new tumours have become detectable scattered in various parts of the brain. Our consultant showed us four that could be clearly seen, and there are likely to be more seeding. The important thing to absorb is that we can’t tackle this sort of spread in the same way. It's a bit like Splat the Rat. We have now moved into a phase where radical action on a single target area to contain or even cure is no longer possible.

Our consultant’s recommendation was that next week we begin some “whole brain” radiotherapy. This is lower dose than the huge shot they administered in the stereotactic radiosurgery, and targets the entire brain, not just the tumour. There are pluses and minuses to this. The plus is that it should slow everything down, and crucially ease the swelling in the brain which caused the seizures, which, if they recur, could be imminently life threatening. The minus is that whole brain radiotherapy can’t discriminate between healthy tissue and tumour tissue.  They can’t predict precisely what effect that may have, but increased exhaustion and loss of some memory are likely to be high on the list. If declining the radiotherapy could protect me against those, I’d have opted for a shorter term with higher functioning; but leaving the tumours would also have adverse consequences on brain function anyway. So this might buy us some time, and that seems an offer worth taking.

One thing it helped me enormously to know was that by exercising my brain and body within what instinct tells me are achievable limits, I will not make anything worse. This isn’t like the swelling on an external wound which can be aggravated by activity. So if I feel like doing something I can try it. However, it will be impossible to know what I will feel like doing until I'm in the moment.

This will make planning this next phase much more challenging, especially regarding response to everyone's kindness. Every visit is going to have to be conditional. We won’t be able to have anyone to stay for the immediate future. I might be manically typing away on the blog or on Facebook one day, then go into radio silence for a fortnight. And, as Mike and the kids have a daunting burden now to carry, they may also go unresponsive for a bit.  The important thing is you know that are we feeling well cared for medically, that we have a local team of friends and community who are loving and looking after us practically, and if we want anything we will be not be afraid to ask. We will love to receive any messages, so long as you understand that we may not be able to answer them. 

I know one or two people have asked questions about the detail of what is happening to my brain.  If you're interested, these'd be my top recommendations.

 For medical questions, I think the clearest website is the Roy Castle Lung Foundation one. Good fact sheets.What I have is lung cancer which has metastasised (spread) to the brain.  

As to what it actually feels like in my head at the moment, if you can cope with a challenging read, I recommend The Iceberg by Marion Coutts. Her partner, the art critic and writer Tom Lubbock, had a brain tumour exactly where my large one is - in the 'language centre' of the brain. Extract here  http://www.theguardian.com/books/2014/jun/15/marion-coutts-tom-lubbock-iceberg-extract. Tough read but it has helped me more than any other book I think.

Enough for now. Thank you for being with us. More soon hopefully.

A bit of health news

Mike writes:

Some news about Debbie. On Friday morning, Debs had a series of fits, and had to go to hospital overnight. Her medication has been changed, the fits have stopped and she is in good spirits. Her speech is somewhat affected, as is the use of her right hand. This obviously means that speaking and typing are going to be hard work for a while. By all means send messages to Debbie or to me. There may not be a quick response, but they will be read and appreciated. Thanks as always for your ongoing messages of support and encouragement.

A Good Week Part 3: A Therapeutic week or a Scrounger's Treat?

It's taken me longer than I planned to finish my reflections from our holiday in Stixwould - I knew there was more I wanted to say, but wasn't quite sure how to frame it.  However, one of the headline stories from this morning's Today programme on Radio 4 has left me ranting, and given me the shove I needed to get me started.
The story if you missed it, was this:

NHS personal health budgets spent on 'patient treats'

It's a complex issue that'll need a bit of teasing out, so bear with me. But whatever you conclude about what is or isn't appropriate use of the NHS budget, what for me is beyond doubt is that both the BMA and the BBC are behaving irresponsibly by commenting and publishing in a way that can only fuel prejudice against the most vulnerable.

Let me go back to our little holiday in Stixwould. I wanted this post to be largely about gratitude, because the truth is that without the generosity of others, we would almost certainly have decided that any sort of holiday was beyond our budget this year. There have been other spending priorities that have had to take precedence. I haven't been earning since I was diagnosed, and as the financial advisers from MacMillan confirmed, I hadn't a snowflake in hell's chance of qualifying as entitled to any benefits beyond free prescriptions. I would almost certainly be classed as fit to work down a coal mine in the current climate, after all. The fact that we have had our Manchester mini break and the Stixwould holiday, complete with theatre and cinema, meals out and lovely comfortable accommodation, is solely due to some generous financial gifts from friends and family, and charitable grants from trusts set up to support church workers.

 
Most of us don't find is easy to receive "charity". Most of us would rather pride ourselves on working to pay for our own treats. But what has made it much easier to accept the position we're in is the realisation that our friends have wanted to do something to help me feel better. And they have succeeded. They've made us all feel better; but they have also, very specifically, improved my health. By giving me the chance to enjoy real, restorative rest and good food. By giving me time away from the business of a clergy house. By giving me the mental and physical stimulus of a new environment to explore gently. By making me feel loved and cared for. These things are not, I would argue, some sort of hedonistic self indulgence; they are therapeutic tools, and they have contributed to my mental and physical well being as surely and concretely as the - much more expensive - drugs, medical procedures and hospital accommodation bill I have run up on the NHS budget this year.

Not everyone has friends and family, however; or charities for whose help they are eligible. For some people who are long term sick or disabled, managing their own NHS health budget involves some hard decisions about what is going to be the best investment for their own health and well being. And some have decided to use this money - to which the NHS has deemed their condition renders them entitled - on 'treats' such as holidays, riding or music lessons, a sat nav, massages, or - the extravagance of it! - £7 on hiring a pedalo.  If they had spent the same money on additional drugs, mobility appliances, etc, presumably no one would have batted an eye. But who is to say that their health has not been more improved and their quality of life more enhanced by the choices they have made? 

So - my first reason for exasperation with this story is the assumption that only drugs or medical equipment could possibly be of therapeutic value to a patient. The British Medical Association bewailed "the inappropriate use of scarce NHS money on non-evidence based therapies . . .While individuals may themselves value a massage or summer house, others will understandably start to question why they can't also have such things paid for by the state - and that will just fuel demand." Yet no one questions the huge amount of money spent on drugs for patients which may in some cases be less effective than an activity or item promoting physical or mental well being.  "Doctors have to follow the evidence, they have to make sure everything they do is effective. To see in other areas of the NHS money maybe being spent on things that doesn't have such evidence behind it, particularly at a time when the NHS is trying to save lots of money, is hard to swallow." But how can you produce 'evidence' of the health benefits of a holiday?
I understand the instinct that a "Health Service" ought to be about providing items that come with a prescription label. But the NHS' own charter talks as much about well being and patient centred care as it does about illness and treatment: it's a health service, not a medication service. And if someone's mental or physical health will be more helped by a holiday than anything else, and the NHS has deemed them deserving of a budget for their mental or physical health, then I for one can't see that it is a problem to spend it on a therapeutic holiday rather than therapeutic drugs.

My real problem, though, is with the way in which this story has been reported. The highlighting of 'horse riding' and 'holidays' and the use of the word 'treats' all seem subtly designed to  promote the idea of the long term sick and disabled as scroungers, misusing hard earned tax payers money for frivolous ends. But their decisions that this use of the funds to which the NHS had deemed them entitled were wise and justified were all approved and agreed by NHS representatives. They have done nothing wrong. And yet the article gives the impression that they are some sort of fraudsters. I think there's plenty of "evidence" to suggest that that will be quite the opposite of therapeutic for their mental health.

Meanwhile, I'm just grateful that I have people who love me to thank for my 'treats', rather than a Health Service which gives a benefit with one hand, and takes away the dignity of those who receive it with another. 

A Good Week Part 2: A Safe Haven

Where the trains used to run

Everyone should have a special place they can go back to, a place that offers stability and security in the midst of a world where so much is uncertain. For the last 21 years, Station House in Stixwould has been such a place for us. Back in the early '90s, Graham and Val Byers converted their beautiful home into a Guest / Retreat House, where they practise their special gift of hospitality. Our first visit there with a newborn Jono helped us to reorientate ourselves to the adventure of parenthood, and we've being going there ever since. I've been there pregnant, bereaved, joyful, depressed, feeling well and feeling exhausted. I've watched my children love it and its human and animal owners more and more each time they've visited. I've seen Mike relax and leave refreshed every time we go. So a week together there, with the newest Mrs Peatman too, just at this particular point, couldn't have been better.

For a couple of days, while everyone else went out and about, I did very little except sit at the window of our room (on the side of the main house in the picture) writing, dozing and thinking. And one of the things I found myself thinking about was the many people I've met over the years while I've known this view who have helped to prepare me for what this last few months has been all about. As a priest, you get to spend time with a lot of people who are having to get to grips with the reality of illness and the imminent possibility of death, so I'm in quite a privileged position. As I was thinking about those people, and thanking God for them, and remembering their warmth and depth and humour, the empty room was filled and flooded with life. Whatever I am on this journey, it's certainly not alone.

Of the many friends I found myself remembering, there are five women I feel particularly close to whose companionship at this point is crucial Though their deaths range from 2001 to 2015, they were all of a similar age to the age I am now when I knew them; they all died as a result of cancer - some after only months but others after long years of living with it; they all suffered the indignities it brings with strength and humour; they were all able to be bewildered and scared as well as heroic; they all cared far more about what the people who loved them and needed them were going through than about themselves. They all desperately wanted to live. But faith in the creative, loving power of Goodness - the Eternal One to whom Jesus draws us -  gave each of them a context in which to live where death is not the worst thing that can happen. Or the end of the story.

And here, at the window of a disused station house loved into a new and transformed life, they live on.

A Good Week Part 1: A Close Shave

Before and after

What a good week it's been! A sponsored haircut, a glorious little holiday and some random deep thoughts as a result. At least 3 blog posts worth I think. Let's start with the haircut . . . or in fact, let's start just before the haircut, on the morning of 13th August,  with Ellie picking up her AS results. 6 A grades - with everything else that's been going on, that's not just good, it's insane. Definitely worth a celebratory coffee

Off to Atkinson's . . .

 Then to Jo and Cass's salon, which had generously offered to shear the locks for free. They were also kind enough to supply bottles of champagne, and tolerate a whole crowd of us cluttering up the salon to cheer. The money's still coming in, but with on line and cash donations and gift aid the fund is well over £5,000 now. Amazing! And she looks fantastic into the bargain.

It's  probably not surprising that I don't relish the thought of being photographed at the moment. I've never much liked it, to be honest; and I'm not exactly looking my best these days - even the hat can't cover the effects of the steroids. But if my girl is brave enough to do this. how could I not be proud to pose with her in all my puffed up and balding glory?

This morning, as chance would have it, I had my first glimpse of a book that I'm looking forward to reading when it comes out next month. Accidental Saints by Nadia Bolz Weber  has on its cover an extraordinary woman known as Bertie, who looks rather like I feel just at the moment.

Thanks Nadia, for finding God in all the wrong people, and helping them feel beautiful when you do.

Keeping on keeping on

Well, the news from the other side of the assault course is looking pretty positive. The tumours in the brain have not grown in the 3 months since radio surgery. They haven't shrunk either, and it may be in due course that we'll give them another blatting when my system's had time to recover from the first one. But they are stable. There's still some swelling around the larger one, which means I have to be back on the steroids for a bit, but so be it. The really good news, though, is from the lung, where the tumour has shrunk by about 50 % . If there's anything else lurking around thinking of growing in other parts of my body, the Iressa (biological therapy) will be working on it too. So - encouragement to keep taking those tablets. We scan everything again in 3 months' time, and see how the picture's developing.

I guess the task for now will be continuing to establish a new pattern of what this next part of my life is for, and how best to spend the energy I have. It's highly unlikely that I'm ever going to have the strength to work again at anything very physically demanding, so I'm learning to let go of feeling guilty about that, and to work out when my body is telling me I need to stop (usually nausea is my best indicator.) I can still write though, even if it's a lot slower, and I'm trying to keep on with that most days, even if only for a few minutes.  Decoupaging in my impulsive and random way makes me happy, and I'll be attempting to make most of my presents for Christmas this year. Popping in to the children's activities I used to help to lead - like our Holiday Club which started this morning - keeps me feeling in touch without getting over exhausted. Quiet times during these holiday days, just being with the family and the dear friends who drop in so faithfully and make us know we are not alone, are precious.Walking the dog most days makes me feel I've achieved something and saved Mike a job! And the sea is fantastic therapy. I am so thankful to live in such a beautiful place.

Highlight of this coming week will be Thursday, when my brave daughter goes straight from picking up her AS results to have her head shaved for Macmillan's Brave the Shave campaign. watch out for the pictures soon!

So - a bit more keeping on keeping on. And a determination to remember that life is good.