How not to say the wrong thing? Comfort in, dump out!

I've being wanting to write commending this post since it appeared on my friend Janet's wall weeks ago. At first it seems really obivous, but there's much more to it than meets the eye, I think. Reflect on it it, the more true and helpful it is. For those who want to be a real help by their conversations with us, but who also want to be honest themselves, it's the most helpful of these articles I've read, but also one of the simplest.

I hope I've whetted your appetite to take a look at the article in full - it's not very long and the web reference is:

http://www.latimes.com/opinion/op-ed/la-oe-0407-silk-ring-theory-20130407-story.html

Silk Ring Theory - on how not to say the wrong thing.

if not, here's my little summary:

When someone is seriously ill, people are often wanting to help, but also to manage their own emotions honestly about what is going on. This can sometimes though end up being a burden rather a help to people closest to the action and emotion, and can become an intolerable strain on them. Reflecting on the metaphor of the rings of a tree can be a real help, however, and should help us all to be appropriate with their emotions, and to be properly supportive of those who most need it.

You need to begin with a decent sized piece of paper, an on it, draw an arial view of a sliced down ring sample of tree trunk. Each slice should be big enough to write a few names in.
     
Begin by writing the name of the person who is seriously ill in the middle ring of the tree. That person, apparently, has a golden ticket to say anything they want to anybody. It's your perk for being in the middle of the tree. I'd have thought that small children in your family might trump even your rights, but she makes no mention of that; perhaps they have to be set up early with an explanation that mummy / daddy might be very grumpy sometimes, and a guide of where they can go if they're upset. That's probably a better solution, there's nothing like the relief of knowing that you don't have to cope with  any 'dumping in' from anyone. Even if it's part of your nature. You can tell anyone to lay off you as a dumping ground, and if they can't cope, know it's their problem and feel free to put a block on them talking up your time.

To be fair, the majority of people do get that, though not all by any means. The next ring or maybe two, depending on where the people in your own fit, is the really important ring, and this is where people often don't get it at all. I have often in the past not got it, and this is where you really matter.

On the next ring, put the people you consider closest to the person who is seriously ill. If in any doubt, go with spouse and children before anyone else if they have them. They may not look closest, but chances are that they are, even if what they show on the outside doesn't make them seem it.

So in my own case, for example, if anyone feels they are closer to the pain of all this than Mike, Jono and Ellie, you are seriously deluded. Sorry folks but there it is. None of them are people who cry in public easily, but losing a wife or a mum is simply worse than losing a friend. And likely to have a much bigger toll on them.

If the person's nearest and dearest are much less obvious to them, why not ask them? It may not be appropriate, but it may be. If they don't have a particularly significant other or others, then the potential for mistreating each other is probably significantly reduced. Just general common sense should help.

Now that the immediate rings are done, it all becomes a bit more arbitrary. Who do you think is closer to the emotion in this than you are? Wouldn't it be interesting to see the person's own tree and see where you figure in that? The best rule I can think of is play modestly. If in doubt, assume you are a ring further out that you think you may be. Crucially, if you feel you're going to have to let go of your emotions, see if you can identify someone whom you can talk to to who is at least as far out as you are, and preferably further out than you. And now take a look at what the map looks like.

This you can call your "care in, dump out' emergency wall checker. Some people have even found it helpful to stick on the fridge when going though a serious trial; like waiting for a terminally ill patient to die.  There is only one golden rule to follow, apparently, and it's this. Apart from sideways traffic, e.g. between siblings, all traffic has to be one way traffic. When looking towards the centre of the tree, you offer ONLY SUPPORT AND CARE. If you need to dump your own feelings, then you ONLY CHOOSE TO DO SO OUTWARDS.

In order to enable you to do so, spend a little time what constitutes a 'feeling dump'.  It may, after all, be a simple request for information. If made in the right way, this can even be supportive. If not, however it can become highly exploitative and draining.

Consider, for example, one of my closest 3 being asked, in passing, "How's Debbie Today ?" Looks like a thoughtful question? Actually, it's probably a request for information from someone who's tired out, got other things to think about, and would prefer not to have to engage with it. They may not have thought about their mum all day, and been trying to have some headspace. But your question suddenly makes them feel they should be up the minute with news. It may be that they'd love to talk about it. But you can only find out by investing a lot more time in them, and if you don't have it to give, then don't ask them at all.

So, for instance, the way of investing care in would be to say "It's so good to see you. Do you feel like a coffee and a chat sometime? No worries of not - or if you're busy now but would like to just say when. My treat." You spend that time on letting them take control. "It's just good to see you. Trivia or deep stuff?!"  make it clear you're there for them. IT'S NOT THEIR JOB TO KEEP YOU INFORMED. If you want information that badly, then root for it on the inside, not the in.

It is a little complicated of course if one of your dearest few is part of a caring profession where the expectation is that they would your dumping ground on other matters. it is of course fine to expect them to be here in that way, though the really caring thing would be to find other dumping grounds for everything.The caring thing though is not to come near them with anything that bears any relationship to a dumping ground about the person they're caring for.

What a big difference those few things would make. And actually are making, as people become more sensible. Thank you for helping us all to cope in the best way we can x

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.