What a difference a wig makes!

Thank you all so much for your encouraging comments after my heart to heart on the last post here. Did me lots of good to share all that, and even more to know it had hit a nerve with one or two others too. Suffice it to say you're an excellent therapy group :) and now at last my wig referral's come through, and I LOVE IT!! so much better than my little hats. just don't stand too close to the oven door apparently, or you might melt.

In this post I also want to look at another feature that's brought big changes to my life over the last year, and that's the issue of communication.A year ago, what took me off to A&E was primarily that my speech was getting very muddled - so much so that I  thought I  might be having a stroke. I remember the last straw was an inability to say  "Mushhhhhhhhhhhy peas!"  I could hear what I wanted to say but was unable to form the word. I was also suffering numbness in my right arm and hand. They popped me in a scanner, and sadly the results were worse than we feared - 2 brain tumours, in the left side of my brain. The swelling round them was pressing on the relevant bits of my circuitry - especially on the 'speech and language centre' in the brain right side. Steroids reduced the swelling and within days my speech was back to normal. A year on, however, and it is now much worse than it ever was, both in terms of written and spoken speech. It varies hugely of course. At good times I'm not too bad at all.  But occasionally I cannot get  thoughts and sounds to coordinate at all. Especially if I've just woken up.

Yet again,it was a wonderful nurse from the Day Hospice who had the time to say 'I don't know if you mind thinking about this, in which case just ignore it, but it would  be useful for me to find out what helps and what doesn't if someone's having to work hard at communicating. Is is helpful, say, if we try and finished off your sentence?

Good to be made to think  about that. I seemed to conclude that really I didn't mind either way if my listener tried to help me finish (sounding a bit like a 2 Ronnies sketch!) or let me struggle to find things if I could. What I did mind, though, was pretending that they'd had heard and understood when they hadn't, or clearly pretending  not to hear, maybe because they were embarrassed to have to ask. And that one has been back to rebuke me, because I've done it to a friend. I'm afraid I couldn't face returning her phone calls, so I just didn't do it. One reason I won't attempt to speak on the phone now.

What frustrates me most about the state of my speech? I'd never have realised this, but it was obvious when it came to me. I can't tell a joke any more! To tell a joke you need speed and timing, neither of which I have now. Learning that I can just shut up, and not be the  centre humming along in every conversation, is hard. When a few of us are talking, too, learning that I can just sit back and listen rather than have to get my thoughts in is new. And I often have to make a conscious decision that my pearls of wisdom are not really necessary on everything.


I find myself thinking a great deal about Stephen Hawking these days. Apparently, his ability to use his voice is down to one muscle in his cheek which still responds to him. One muscle! So what happens when that one muscle finally goes? I can't see  him lasting the week to be honest. Because it seems to me that what has kept him going for so many year is his ability to communicate. That goes, what has he left? No reason at all to stay alive.

Compared to Stephen my ability to communicate seems so easy and fluid. My ability to type is still here, although it takes me a long time now. What happens is I get everything down pretty quickly, but when I look at what's on the page it's gobbledy gook. I can still decipher it but only just. So I go  back painstakingly through each paragraph and correct. Pride makes me cross when mistakes get through! On my newly gifted iMac though, its so much easier to see and to read, it gives me joy every single day. So long as I have a  way to communicate, that what gets me up and determined. And technology has made that possible. So - thank you Blogger; thank you Facebook; thank you beautiful new iMac. With a bit of well planned effort I can still speak, Or put another way, I speak, and therefore I am.

Worth far more than lilies . . .

Well, January has proved a very good month indeed. Things have stabilised on the medical front, so not much happening to report on there, which suits me well. It is the most boring bit of the whole thing, after all. Brain scan mid Feb though, and that will be important, and something of a pointer for how the next few weeks / months are likely to go. But it should be a month or so till I have to engage with that. As long as nothing unexpected happens, I can spend my mind power on much more exciting things.

A few things I'd like to tell you about.  I'll do them gradually one post at a time, though. Hope they're something others can relate to. A common thread for me is realising how this experience has taken me to unexpected places which, I now realise, are daily territory for some people. But I've sailed through life not realising that. Or perhaps realising at a surface level, but not feeling or actually engaging with it at all. If walking this path has opened up my ability to do so, then then has to be a good thing. I did hope it might help me be a 'different kind of priest', and a more empathetic one would be good.

Next post, I'll aim to concentrate on what the effects of losing my ability to speak clearly have made me realise.  This time, though, I'd like to concentrate on the more unexpectedly devastating one, which I've been on quite journey with. Which is the effect the changes in my physical appearance have had on me.

The reason this is so unexpected, frankly, is because (since being a normal insecure teenager at least) what I 'look like' is never something to which I've given a lot of thought. Particularly since getting together with Mike. Which is actually a huge compliment to him, and what a gift of security he's given me through my adult life. (Thanks, chuck xxx) I've loved enjoying the colour of clothes, the making of colourful cheap jewellery - I'm not saying getting dressed was anything but fun. But as to how I looked under the clothes, well - just so many more important things to worry about! I hadn't worn make up for at least 20 years. Never weighed myself. Often went out and realised I'd not looked in a mirror, so my hair was uncombed. I didn't think, if I ever thought about it, I had great looks! But I had - have - enough affirmation to believe that that just isn't hugely significant, to anyone who matters anyway.

But the last few months have seen a pretty devastating changes in my body. And suddenly, it became an ENORMOUS thing. I've  gained about 3 stones in weight over not many more months. That loss of control has felt alarming, uncomfortable (struggling to climb stairs, etc) but - the but I didn't expect - deeply, irrationally, shaming. I've wanted to hide my body from everyone. Even my nearest and dearest. Even myself. Tried to pretend I'm fine with it, but winced being photographed. And of course it's a whole package - bald as a coot, red bloated cheeks, puffed up neck, eyes becoming swollen over and faded . . I could go on. Most people wouldn't find that easy, I know. But I had no way of anticipating how drastically upsetting I've found it. Not been able to think through and be honest about it.  New territory indeed.

I suppose my means of coping - not consciously, but that's what it looks like - was to try and make it the subject of humour. "If I get in there first, they'll see that I realise how bad I look, but that I'm coping with it fine. . ."  And that's a good strategy in some ways, because there  are funny aspects to it. But not as a means of self protection.

Anyway, one of the features of walking this last month has been thankfulness for  the gift of unexpected help to look at this, and give it the honest attention that can begin to turn it into something honest and healing rather than just a source of pain.

It started a few sessions ago with one of the nurses at Day Hospice  having the skill and care to draw me out - as if she had all the time in the world - on my feelings about my body. I'd had one or few conversations before where friends had said very insightful things,, but because my guard was so up, it's only later I've been able to access those conversations and realise how helpful they were. Too much fighting to stay in control at the time. And having been listened to so well, the floodgates started to open inside. I started (in private, but that's a start!) to be able to cry.. I was able to indicate to significant people I was struggling. I threw a lot of projected anger at Mike, bless him, who took it all on the chin. And, amazingly, I started to feel stronger, less ashamed, less like a monster,more accepting.

I have to say there are a lot of articles around on how much damage people can do by saying the crass thing to people in our situation, and I've been extraordinarily blessed in the helpful reactions of people who have picked up at all on the sadness that was there behind the humour and been brave enough to comment on it. Only now I have I really been able to engage with a lot of them. From the positive engagement with the humour, to the simple and loving, to the insightful and inspiring, they been helpful without exception, and I'm grateful for them all. The most heartening thing, however, has been the reaction of the children here, who through weekly Junior Church and Messy church I used to see so often, but have had to withdraw from drastically over the past year. My fear was that the changes in my body would make them panic, turn away, not be able to look at me. How ungrounded those fears turned out to be. They run to sit on me like they always did. They look at me straight with curiosity but no fear. They ask honest questions like 'Why is your face so big? When are you coming back? Is your hair all gone?' without shame. They shout to me in the street. They pray for me and send me letters. A year on, one so small I can barely believe she still remembers who I am has inspired me with the desire to write our church children  a book, which I've now begun. Now, if I can walk through this bit of the journey without fear but in humility and honesty, who knows if it just mightn't prompt someone whose journey has been a long struggle these sort of issues, rather than a last minute initiation into them, to begin to be set free.

To be honest, I reckon it's really about grief. Walking this chapter I have begun to grieve for a body which I took for granted but felt at home in. Because, alas, like Yorrick's, it aint going to be there for much longer. I suppose what I want to reach out with is the realisation that struggle with these issues takes up a huge part of life  for many of us, and it ain't worth it. You are beautiful as a lily or sparrow, whatever you think or feel. But amazingly, you are also worth much more than that.

A quick appeal for help!

Brewing a couple more blog post soon - but this is just a quick appeal to see if anyone can help our - now delighted to be able to say - friend Katherine Bevington, whose catering I have recommended after our various celebrations this year. Katherine received a request to cater for a 90th birthday party and we're pretty sure the sender mentioned that he had seen her recommended via this blog. However, with all the effects of the flooding etc Katherine has lost emails, and she has now no way of getting back in touch with him. I have a few more details but won't reveal them unless noone reponds, just in case I spoil anyone's surprise! But if you are or know who this might be, it would be great to hear from you. Best plan would be email Katherine direct (you can google her at Bevington's Catering), or if you'd prefer to contact me instead, happy to pass on messages.

Thank you! More soon.

It's 2016! And guess what . . .

I'M STILL HERE !!!!

Or as the wonderful Tom Lubbock called his account of the last part of his life, Until Further Notice, I am Alive.

Which is amazingly good news, from my perspective. To be able to wish you all a Happy New Year was something I had no real hopes of ever doing again 11 months ago, and the fact that I can not only do so, but do so feeling I have quite a bit of life still left is - well, it's brilliant, to be honest. Thank you being there to listen. And thanks being so much of the reason I'm still going strong.

I'm not going to lie, though; the last few weeks have been fairly challenging, and while Christmas Day itself was just lovely, I'm very glad to have got through the week following and back to something like normal. After a brain scan result on 14th Dec that was much more positive than we all feared (palliative radiotherapy had slowed everything down, and no more new tumours seemed to have appeared since October)  Dr Kumar, the brain oncologist, suggested that we have another little go at reducing my steroids after the festive season. Sadly, it didn't go too well . Perhaps it's partly that I fear coming off them as much as I'd love to come off them. After all, it would be nice to see my own body and face again under all this blubber.

Perhaps I just need a nice placebo. But whatever the reason, after a day without them, I just couldn't get up, and felt desperately sick. And then I was desperately sick.  But hey, no hair to have to hold back, eh? Silver linings!!

Thank God for Ellie and Mike, and my lovely District Nurses who always make everything better! Under the stairs we now have a special emergency medication bag which they keep supplies in for such times . . . normal prescription boxes but in neatly wrapped packages bearing messages such as "For Pain", "For Nausea" , and - my personal favourite - "For Anxiety" . I expect to open them and see brightly coloured potion bottles, like something from Alice in Wonderland - "EAT ME!" "DRINK ME!". "INJECT ME!" Which is exactly what the nurses do so well. No time at all and I was able to keep the second lot of medication down where it should be, and then .... I fell asleep. And I stayed asleep. For hours. And hours. In fact, I haven't spent so much time asleep for, well, months. I might have to read the bedsores book which came in my handy pack, and only just escaped the recycling bin - not so proud now are you Mrs?!

Special visitors at Daytime Hospice the week before Christmas.

And today it's a week later, and I managed to get to my weekly treat - Daytime Hospice! Which I realise doesn't necessarily sound like most people's idea of a weekly treat, but that's probably because you haven't tried it.  My lovely MacMillan nurse Heather referred me, and today has been my 3rd visit. I've been pampered, done some art, done armchair exercise to Glenn Miller and Tai Chi to - oh, what was it? Something suitably classical, anyway -  been fed beautiful, digestible food, spent time at the service in the peaceful little chapel, and had lovely chats with staff, volunteers and other patients. What's not to like???   In fact I like it so much, that while I was sitting in chapel the thought popped into my head "Maybe I could come and volunteer here when I'm better?" Which made me laugh, not to mention the unseen crowd of Saints and Angels, who quickly pointed out that if I intended getting as well as that, then I was holding a place under false pretences!

But I can live with the laughter of Saints and Angels. Especially when I didn't really expect to be here at this point at all.

Time for a little kip now. More soon . . .

Happy 2016 everyone xxxxxxx

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.