Saturday, 23 January 2016

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.

Thursday, 7 January 2016

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.

Tuesday, 5 January 2016

It's 2016! And guess what . . .


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