Cycle 5, Day 2 …hanging on in here…

Chemo yesterday was ok once we got going, but they were so busy that we were more-oR-less ignored for 30 min till I got quite weepy – I’d forgotten to take my larazepam (I get more and more tense as the time for finding the vein draws nearer) and my initial request was met by ‘Well, we’ll have to get the doctor to write it up. We don’t just hand them out like that, you know’. ‘I know’. I knew, that’s what I was asking for. Part of the problem is they no longer have a ‘named nurse’ system, so I’ve seen different people every time. Sat back down in tears, upsetting my friend J who had driven me in. A nurse I’d had before came over, was very sympathetic and said ‘Of course I’ll get you the larazepam’, and also said how much they missed the ‘named nurse’ system. My nurse for the day finally arrived and was extremely attentive and kind – could see why I’d had to wait 45 minutes while she was with her previous patient! The tranquiliser had started to kick in and she only took 2 goes to get the canula in.
Earlier in the day I’d been told that I’ll have to have a blood transfusion because my HB count is borderline, and with the breathlessness and dizziness, they think my bone marrow is just not managing to generate enough blood. Didn’t even know this was on the cards. Melanie my oncologist says the Scots are very good at giving blood – apparently we export to England – all very well if we didn’t have practically the unhealthiest population in Europe! Of course it’s very carefully vetted… So, Tuesday I’ll get 2 litres over 4 hours. Back to the same chemo ward to do it. Have asked for a nrse I’ve had before, we’ll see.
Boys last day at school – and we’re covered in snow! Tom’s been snow boarding in our garden, Jamie’ off with a bunch of friends to Manse Wood in the pitch dark! I’ve been dozing all day, feeling on the edge of nausea. H on his way home thanks goodness ….

Preparing for Christmas and the next chemo

… but trying to keerp it on the periphery of my awareness. As usal, I’m dreading it, but also – another of my new habits – I’m very busy making the most of these few dyas of wellnes before I get slapped down again. Right now I’m stealing a few minutes while waiting for the nurse to arrive to take my bloods before H and I drive down to Peebles to collect the boys and go to the matinee of the Queen tribute ‘We will Rock You’!.
Henry has been on holiday for 3 days, since the weekend. We decidd it made more sense to have time together while I was well rather than next week when I probably won’t be up to much (though who knows? you always have to cultvate that litle quiet optimism that this time it won’t be so bad!).
Anyway, we’ve been packing it in. The early mornings hve been deliciously lazy, snuggling back into bed after the boys have set off into the 8 o’clock drear – it’s been pretty ghastly the last few days, none of the pale winter sun that we had on Sunday. But after that, and a jacuzzi bath, it’ up and off! Consequently we’re further ahead with our Christmas preparations than ever, as well as having done things like putting up the light fittings in our bedroom and getting the boys winter gloves etc, for the snow we hope to see soon.
I’ve been feeling OK, though I strained my left side 10 days ago trying to lift a roasting tin full of stock out of the oven, and it’s been playing up since. As I do everything with my left hand, even sitting doing this pulls a bit. And of course my right arm hurts more at this time of year, so I tend to be quite tense. But meditating helps.
Must just mention last Friday night when 5 of us went out to the Bakehouse for a lovely meal, and then decided to go on to the Gordon Arms. Well, it must be the first time in over a year that I’ve done that and I thoroughle enoyed myself!

Christmas begins

Well, I’ve just written a whole big bit about the Peebles High school Christmas Concert last night and then managed to delete the whole thing before posting. That’s a first. Not feeling quite so Christmassy any more! Suffice to say, it was great, the music department is very good indeed and we all enjoyed it very much.
My cold is much better and now I’m going to get ready to go out to the Bakehouse with some friends…

Out and about and suffering the consequences…

Been in bed with a lousy cold – just that, I think, though I always tend to worry that it’s something worse. Spent yesterday in bed, but rallied today to do the last of the overseas Christmas posting. The weather’s brighter today too – yesterday was dark grey and miserable so cosied up in bed with the stove on was not too bad a place to be. I’m reading ‘Remember Me’ by Melvyn Bragg which I took ages to get into and still find a bit long-winded, but the era (70’s) is an interesting one for me – takes me right back.
And we had a good weekend: my friend Isa came for supper and a catch up on Friday and then on Saturday, alerted by the Guardian, we took advantage of the B&Q free Christmas tree offer by buying the lamp shades for our bedroom and a few other bits and pieces we needed. In fact, we spent enough to ge two free Christmas trees so got one for the deck as well, which is probably a bit excessive. We’re not putting them up till this weekend, they’re standing in a bucket of water outside.
On Sunday we all went for an enjoyable walk at Penicuik House: we were lucky with the afternoon sun and the boys were in very good form singing intros to songs for us to guess aka Never Mind the Buzzcocks. I do like the walk – there’s a place where you come up from crossing the river and look across an old haha to a flat field with sheep and trees dotted about that I find very beautiful.
Right, now to those cards…..

I’ve added some poems and other writing…

.. hope you enjoy them. They’re from earlier this year, when I was doing the OU course. I’d like to get up the motivation to do some more.

Eventful weekend

Listened to an interesting Radio 4 programme about time yesterday – why it seems to speed up or slow down according to how you’re feeling and how old you are. Lots of different theories and no conclusions, but the bit I liked was about ageing and how when you’re a day old, a day is half your life, and as you get older everything is relatively shorter, and feels it.
Well, although these last few days have gone quite quickly, generally I feel quite content with the pace of my lfe which is telling: a few years ago I was always chasing my tail, and remember wishing frequently that I had an extra hour a day and an extra day a week. Now I feel almost complacently content with the amount of time I have on a day-to-day basis, if bit uncertain about my total alloted span!
Having said that, Friday afternoon dragged. Thomas, Jamie and H had their flu jags on Thursday night and on Friday morning, while he was in technical studies, Thomas fainted, scraping his face on a table as he fell. To cut a long story short, he and Jamie were taken to Sick Kids by ambulance where H met up with them. Thomas was still vomiting, so they kept him in overnight, H bringing Jamie back about 8pm and then returning to spend the night with T. Well, I knew with one part of my brain that he was most likely to be OK, but another bit of me was SO worried that time seemed to stand still. Fortunately one of my care assistants was here when the school phoned and she was great – offering to take me down to Peebles if I wanted etc. And later I phoned A, whose son is Thomas’ best friend, and she came over for tea and sympathy.The school said Jamie was a star, though, poor boy, he wasn’t feeling 100% himself and by the time he got home he was beside himself with exhaustion.
H and Thomas were back home by 11am on Saturday, T very pale still with a horrible graze down the side of his face, think he’s lost a bit of his eyebrow. We all pulled ourselves together to go into the Lyceum on Saturday afternoon for a Reward and Recognition event for Henry’s work, which was an invitation to the matinee of the Christmas show (Peter Pan). We thoroughly enjoyed it – all vey well done with Pick ‘n Mix for the kids beforehand, drinks and nibbles and then, most exciting, the cast came up to meet us afterwards. As Thomas said it was just the thing to cheer him up.
And on Sunday I even managed a wee shopping trip to Ikea. Our bedroom is now looking more fabby than ever – an armchair either side of the fire and the pictures hung. What a good week-end, and I slept well for once on Sunday night. This week I’ve been having that ‘low blood’ feeling – slight headache, a bit wobbly, but still managing to get out and about. Went up Deepsyke forest with M and the dogs yesterday, and today been down to Ocean Terminal for a wee bit of Christmas shopping. Couldn’t resist also buying myself a bright pink cap from Ness…

Getting better all the time

It’s wild and wet and windy here, sheets of rain swaying across the window of the study as I sit bathed in the warm glow of my halogen heater.
The nausea has ben easier this time, much easier, and I’ve recovered more quickly from the initial post-chemo phase. Got the CA125 results from the pre-chemo blood test last week: it’s fallen further, to 48, which means it is still going in the right direction, though slowed down a bit. The other blood results show that my blood hadn’t quite recovered from the previous chemo before I had this one, which is probably partly why I’m feeling a bit down. Bit thank goodness it’s nothing like the first two cycles….
The care assistants are coming in every day this week, the usual 2 hours on Tuesdays and Fridays, and then an hour a day on other days, just to tidy and clean, set the fire etc.
N came for the day on Monday. I was asleep and feeling grotty when she came, but dragged mysel up and into a bath. She made some sweet potato and butternut squash soup, we lit a fire and watched her DVD of Leonard Cohen’s 02 Concert last year. It was part of the same tour as the fabulous concert that H and Jamie and I went to at the Castle Esplanade in Edinburgh – interesting to compare the DVD and its close-ups to the memory of actually being at the performance. A good afternoon.
And yesterday M came over to keep me company while the builders came round, which turned something potentially stressful into another very pleasant afternoon. And then A brought round a yummy steak pie which I must say I ate with gusto!
The builders are back to deal with a few bits and pieces left over from the extension. I’d worried that we’d not go them back earlier, but it’s just as well we waited, because a few things have only come up in the last few weeks. They’re working on getting it all sorted – wasn’t expecting it to happen so suddenly (after waiting for months) but they came back again this morning while I was still in bed meditating. So I’ve been up and about all day – very different from at this stage in previous cycles. Might even stick my nose out of the door now that the rain has stopped…

Good news from the misery of postchemo ghastliness ..

….my CA125 had dropped to 59 (from 100) last month, might be lower now – nearing the bounds of normality. Been feeling marginally worse than last time, so back to bed for me with more ginger tea!

To Glasgow and back … twice!

Despite having the swine flu vaccination yesterday, I’m feeling really much better today – the best I’ve felt all month. No reaction from the jag yet apart from a very itchy arm, though because I’m immuno-suppressed I have to have another jag next month apparently. Need to find out more about that.
Our trip to Glasgow en famile was fun: shopping, the cinema, eating out, relaxing at the hotel, and a bit of culture. The highlight for me was a tour of the Glasgow School of Art. I’m used to seeing pictures of a Mackintosh window or a chair or single motif: to be surrounded by a whole library designed by him from the ceiling to tiny details on the bookcases was phenomenal. And the student guides were great – passionate and knowledgeable. They completely made up for the fact that the lift was broken; H gallantly carried the wheelchair up the stairs with me struggling behind and then collapsing breathless back into it! Another highlight was the Willow Tea rooms – we were fortunate enough to get served in the original bit – all glass and mirrors with lots of pink. Apparently the (male) powers-that-be at the School of Art refused to use the boardroom because they found it too feminine!
The boys set off to explore the shops on their own with a map of how to get back to the hotel, while H went to the Ducati place and I had a rest and a massage. I felt a bit like a lioness leaving her cubs a little way from the den so that they could learn to find their own way back…… though I bet they didn’t come back with a poster of Bunny Suicides!
We also went to see Up, the latest animation from Pixar, which is basically about the adventurers of an elderly widower coping with his wife dying. I thoroughly enjoyed it, wept buckets.
And, finally, on Saturday we had a lovely long lunch with some of H’s Brazilian cousins at their house in Paisley. It is great to see the family connection working between little Francisco, aged nearly 3, and our boys. After that H drove us home through the dark and the rain to collapse for the rest of the weekend. So good to have a Sunday here to relax before school and work.
I returned to Glasgow on Monday to the Homeopathic Hospital, expertly driven through Lanarkshire by my friend M. Dr TW said I was looking good and asked me what my ideal life would be right now if I hadn’t had cancer. I thought for a moment and had to say that it would be pretty much as it is – I do feel extraordinarily content with the way things are. Except having to get more chemo tomorrow though – I could SO do without that….

Winter’s come in all still and frosty

We had a lovely weekend – bright golden sun pouring into the house, dinner with friends on the village bonfire night, raking leaves, picking up windfalls to make quantities of stewed apple for the freezer, and roast pork for Sunday lunch ….. could life get any better than this?
I’ve also been taken to Biggar and Peebles for some gentle shopping: with M to Biggar on a dreich Friday afternoon, where there are some delicious new delis and a little gift shop where I bought myself a wonderful lined velvet coat! And then, in the same spirit of ‘Well, don’t get out very often and I HAVE been saving up’, I bought some leather boots with buckles when I was in Peebles with A for lunch yesterday! So all kitted out to go to a charity shop fashion show in Edinburgh tomorrow night, and then on to Glasgow on Thursday. We’ve booked the Dr Who exhibition and a tour of Mackintosh’s Glasgow School of Art, and on Saturday we’re having feijoada (black bean stew) with some of the Brazilian cousins. Doing too much? Never!
Tomorrow is our wedding anniversary. Mum has pointed out it’s actually our 11th, not 10th as I thought. Thank goodness someone knows what’s what, though it won’t detract from our celebrations. H has got the day off so we can have a lazy morning just the two of us – a very rare occurrence. H deserves it after going into Edinburgh at midnight last night to pick up the new Call of Duty PS3 game for the boys, actually way beyond ….. Jamie and Thomas were up at 6am this morning to make the most of it.
I’ve just finished reading JG Ballard’s autobiography ‘Miracles of Life’ which I’d recommend as a beautifully written, humble and compact account of an interesting man, well ahead of his time. I relate to his feeling of alienation on coming to Britain from Shanghai where he’s been born and interned during the war. I found his comments on post war Britain (and Cambridge where he studied for two years from 1949, especially poignant. As well as his writing, he was involved in experimental art at the same time as bringing up 3 young children on his own after his wife died at a young age. He dedicated the book, published in 2008, to his children – his ‘miracles of life’. When he started the book he had advanced prostate cancer and he died, at the age of 78, in April this year. RIP.