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.

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.