Monday, 16 November 2015

What a month!

Ellie's18th
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 21st Birthday, and then in October Ellie’s 18th Birthday, and my mother’s 80th 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 24th Oct ) and for Mum (a surprise tea party on 28th Oct).

We decided that the thing to do for El’s 18th 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 60th  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 1st century Palestine with a man called Yeshua and his friends.