Off-line, but hopefully not for long!

I can't thank you all enough for your encouragement to keep on blogging , , , it does me so much good to write down my thoughts and if they re useful to others too that's the icing on the cake. I've been a bit wobbly since Christmas ( which was wonderful,by the way) so probably won't be back on-line till 2016.This comes to you all, though, with love and gratitude and all the best things  2016 can bring xxxxx

It's beginning to look a lot like Christmas

For seven years now, it's marked the beginning of my own countdown to  Christmas - a church full of Christmas trees displayed by local businesses / charities / groups over the second weekend of Advent. In 2013 and 2014, I threw myself into the planning team and was part of helping to develop the tree display into a whole site event, with craft market, cafe and live entertainment - a development that now seems firmly fixed.  This year, I could do nothing to help but watch excited and grateful at a distance, while others cheerfully absorbed the work I'd have done as well as their own. And as if by magic, everything has fallen into place beautifully. In spite of defrosting freezers and lousy weather, we're off to a magical start. If you live within reach of Morecambe, don't miss it, for goodness sake!

As I sat in church on Thursday night listening to our choir singing Rudolph and Let It Snow, I had one of those timeless moments of sheer gratitude for being there, in that building, with those people, to whom for this little time in history it belongs. Elgar used to perform in Morecambe Parish Church once, but now he has been thoroughly upstaged by The Tootle Sisters (yes, those really are discarded can-can skirts) and the school choir. Their music fills the place now. And for this year, quite likely to be this last year for me, I can be part of it.

Who knows what 2016 will bring for any of us? or even what tomorrow will bring? But for today we have here, we have now, we have each other. And knowing they can't last for ever makes them infinitely more precious.

It's beginning to look a lot like Christmas . .  make the most of every second this year. 

What a month!

Over a month since I added anything to this blog – but not because I haven’t felt well enough to write, as I feared I might. It sounds crazy to say life’s been so full and busy I just haven’t  had time, but there you are. It’s been an extraordinary and brilliant few weeks. Can’t think how I fitted everything in when I was well and working!

First, it’s been a month of celebrations. Hard to believe that this year, since I was diagnosed, we’ve had Jono and Amy’s wedding, Jono’s 21^st Birthday, and then in October Ellie’s 18^th Birthday, and my mother’s 80^th Birthday. I think I’d be feeling very differently about everything – well, I know I would – if the kids were still small and dependant. It feels such a kindness to know that they are capable young adults, whom I can ‘hand over’ to the world safely. Of course the thought of leaving them is hideous, but there’s a great sense of completion about celebrating them coming of age.

It’s felt so important to mark the milestones in the best way we can. So this month we’ve had parties here for El (on 24^th Oct ) and for Mum (a surprise tea party on 28^th Oct).

We decided that the thing to do for El’s 18^th was to have an early buffet supper, with the few of our friends she has her own relationship with, and her  best mates from school whom she thought might just be able to cope with us. Made about 25 of us overall. The wonderful Liz Tilley came earlier in the week from Nailsea for a few days in Morecambe, bearing gifts, and casually cleaned our house (like you do.) Catering sorted by Katherine Bevington, an amazing lady whom we can recommend for any function in the Lancaster and Morecambe area. Cocktails by our very own bartender Nicholas; cakes by our wonderful Amy, and general helpfulness by everyone. Soon after 10pm the kids bowled off in to town and the oldies washed up and fell asleep J.  From my perspective, it worked incredibly well. Everyone seemed to mix and enjoy each other’s company, and nothing makes me happier than seeing people I love have a rapport with each other. I just loved it.

For Mum, we enlisted the help of her neighbours to keep it a surprise. So – all she thought was that Jono or Mike would pick her up mid - morning on her birthday and bring her to our house for the day.  What she didn’t know was that Richard (my brother) and Marc (my nephew) had driven down from Edinburgh the previous night, so it was they who appeared on her doorstep to pick her up instead. They took her off until 3pm, by which time her friends had almost gathered here – bad day to have traffic held up! She suspected nothing so hats off to the neighbours who didn’t breathe a word. And seems to have genuinely loved the day, so job done.

And suddenly it’s November, and the medical agenda has hotted up again. My slight anxiety about the effects of the week of radiotherapy in mid Oct proved unfounded. A few weeks later, feeling a bit ground down by a few physical niggles, but no nausea! No real pain! I can take a lot for those to be true. Having just begun a real recovery, my hair has fallen out spectacularly again though :( . Love my hats, wig or no wig? Not sure.  Since March I’ve gained a quarter of my normal body weight due to my steroid friends, and I definitely have the look of a puffer fish. A wig won’t hide that, and it bothers me more than the hair loss, to be honest. Friends who haven’t seen me for some time don’t tend to recognise me if I bump into them out and about, but I find that reassuring. It’s important to remember that I haven’t always looked like this! First week of November saw scan of lung and 3 consultations, one in Preston Infirmary, 2 in Royal Lancaster Infirmary. Bit of reshuffling of drugs, no dire consequences as yet.

And the support and the love goes on, constant and faithful. Moving from ‘curative’ to ‘palliative’ treatment intent has painful, but not a surprise if I’m honest. And not a failure, as far as I’m concerned, for everyone who’s been hoping and praying for my ‘fragile hope’. Who knows how long the palliative piece of string might be? Every day’s a bonus as far as I’m concerned. And it’s given a certain clarity now, and that’s really helpful. We’ve had one home visit, and are about to have a second, from one of the wonderful Hospice nurses – she has moved mountains for us already, and put a in referral in for some Day Centre  sessions. I was keen to start building a relationship with the Hospice while I was still well; the myth that they are only places for the last few days of life is a myth indeed! I’ve got to know our local centre CancerCare too, attending a support group organised by my specialist nurse which meets there. There is so much support and provision.

And last but not least, this month has been about treats and surprises. To celebrate the end of the week’s radiotherapy, what better could you do than go to the cinema to watch the live screening from the West End of Benedict Cumberbatch as Hamlet? Brilliant. Didn’t fall asleep for a second.

Durham Lumiere Festival

And then, just this weekend, the piece de resistance. Ellie decided her Christmas present to Mike and me was a night in a luxurious hotel for the 3 of us in Durham (where Mike and I met and got married) to see the Lumière Light Festival this past weekend. 26 light and sound installations around the city, projecting fabulous works of art onto the historic buildings. I have never seen anything quite so breath taking. Thanks to our Hospice nurse we borrowed a wheelchair – I don’t ‘need’ it yet, but it enabled us to get around much more than I would have managed without it, especially up Durham’s hills, and Ellie is a fearless driver!  (The hardest thing was being able to – and needing to - get out of it for one or two sections; bit startling for people, especially when they’d just parted the way for me. Felt a bit like Little Britain’s Andy. To whom I’m also developing a certain physical resemblance as previously mentioned!!) I would not have missed seeing the Lumière for the world, especially everything round the Cathedral and the Cathedral College (or Close) where I lodged for 2 years. And we had a ridiculous amount of fun in the hotel room. Is ordering late night room service beans on toast the most ridiculous thing I’ve ever done? Especially when described by the menu as “Haricot and cannellini beans in fresh tomato sauce” (they were Heinz) ?? But how good they tasted! And laughing so much at Mike and El once I got into bed that I couldn’t move, and the tears started rolling down my cheeks and splashing into my ears? What a 24 hours. 

Rounded off, after a sleep back home on Saturday afternoon, by another party I was amazed I had the energy to get to – our precious friend Linda’s 60s costume themed 60^th  birthday. Not everyone got Patrick McGoohan as their date J.

So now – a new week. And in what looks like a quieter spell, I have some work to get on with. I’ve mentioned on this blog before the book I’ve been trying to write, but the last few months it’s not been getting much attention. However, I’ve had a couple of real encouragements to get on with it from 2 good friends who want to see me get as much down as I possibly can while I still can. First is Andrew Graystone (whose writings about cancer and many other things I pointed you towards on this blog months ago) ; second is John Pritchard, retired Bishop of Oxford, our tutor and friend at theological college, who is a writer,  has always encouraged me to write, and understands the world of publishing in a wonderful way. So – given that the terrible weather has brought our landline and broadband down so I only have little bursts of internet access over the next few days – I’ll be largely offline, and wandering round 1^st century Palestine with a man called Yeshua and his friends.

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.