Friday, 31 July 2015
16-32-64 twenty-two
Monday, 27 July 2015
16-32-64 twenty-one
Sleeping patterns are an odd joke at the moment - I'm actually looking forward to the darker mornings because I seem to be rising with the sun regardless of what time I've gone to bed. No fun when you really need twelve hours a night - I've gotten into a horrible habit of getting up to take my steroid tablet and eat at silly-am, and then going back to bed for the rest of the morning after an hour of TV. Hunger and sickness aren't a nice combination to wake up to but that part I could get used to, if only I could sleep in a bit longer and not need the nap.
Anyway, for the giggles - here are photos of Garlic in her very own jumpsuit. It took less than three hours for her to work her way out and I've still no idea how she did it - poppers around the tail were still done up and it wasn't even inside-out when I found it. She seemed to be settling into it after lots of encouragement and walking up and down, so I left her to her own devices for an hour and she did a Houdini on me.
I've now got to decide whether to try again as it is; try again but cut the lower half off so it annoys her less and hopefully wouldn't try pulling it off. Seems ridiculous to need to cut a brand new piece of equipment like this a day on, but really not sure what else I can do at the moment...
Sunday, 26 July 2015
16-32-64 twenty
Thursday, 23 July 2015
16-32-64 nineteen
- falling down the stairs at my parents - despite the fact that seven people lived there over thirty years and the stairwell was to what was my bedroom for a good five years; I was the only one to ever fall. I blamed my dad - it was father's day and I was visiting; taking him a sausage sandwich and a coffee. I think I slipped; felt carpet against my knees and somehow over-righted myself. I can honestly remember thinking "ceiling, that's not good" and feeling the hot coffee splash on my hand. The sandwich survived - I put the plate down neatly on the top step apparently. I fell down about a dozen steps and landed CRACK with my head against a doorway at the bottom. I think it was only four stitches; but that one was an ambulance job and probably the most serious.
- falling near home last year - having chemotherapy means everything takes forever to heal; so when I twisted/slipped/tripped this time, tearing my face along gravel was a real problem. Two guys came running over but fortunately I was a minute from home so didn't take their help (hideous embarrassment coupled with total and utter Britishness of "tis a scratch"). When I got in I realised why they were so worried - it looked like I'd broken my nose. As I've said, my left arm only has about 50% reach these days and doesn't stretch out automatically in the way that it should; so I go face-first whenever I fall. My glasses tore into the bridge of my nose, the end of my nose was grazed and I sported a Charlie Chaplin moustache of grazed skin above my lip for weeks afterwards. One of my disability applications was due so the image is immortalised...
- breaking an outdoor wooden step on a newly built bungalow we were exploring near my sister's house; I tried stepping onto the unsupported end of the step and flipped the wood onto the walkway - grabbing at my niece as I fell. I was left with incredible bruises on my back as I fell onto steps on the way down. My niece came off just as badly - my grab sent her falling forward; her flip-flop fell off and she trod on a newly exposed nail that went straight into her foot. This was pre-cancer and I had no idea I also had vertebrae mets at the time; but the bruise was impressive enough on it's own and the only thing that soothed it was swimming. That was the week we visited Durdle Door fortunately, and I spent some very happy hours floating away.
- twisting an ankle near work and going down on both knees in the middle of the road HARD at lunchtime one day. The pain in my knee was hidden by that in the ankle - I remember being sure that if I had eaten already I would have been sick. I lasted a little longer at my desk and then my colleagues put me on the staff bus to our local Walk-in clinic, where they x-rayed and found I'd given myself Osteochondritis Dissecans which is floating bits of cartilage that have broken off and escaped. That was painful for some time afterwards!
- jumping off a wall which was a full ONE BRICK high; landing on a badly placed foot which twisted the ankle. I had to limp home because when I was twelve there were no mobile phones to call for help. The next day we left for a boating holiday on the Norfolk Broads which required being a lot more mobile than I was; what with crutches and a foot that honestly looked like I had a tennis ball shoved down the sock. Mum says as we left a week later I told her; "I am never getting on a boat again".
- twisting my ankle down a pot-hole when I was about eight; the doctor told me the next day that if I had twisted it the other way it would have broken every bone in my foot. I've never known how much truth there was to that; domino bones in the foot? But it's always stayed with me.
- falling on holiday in Devon this year. The family behind me; both sisters and a partner, plus mum (who later said I would kill her with a heart attack) and my niece, who is seventeen and endlessly more mature than I am. They're all saying I shouldn't even try walking across these massive, wobbly rocks down to the beach which is packed with people and children of all ages are using the time to explore. Children everywhere playing on the rocks.
I'm in a grump at being treated like a child and I went ahead anyway. Within moments I managed to fall and turn at the same time; I ended up with my head lower than my ass, which was lower than my feet on the rock-hill; and hearing mum shriek my name was enough to let me know I was never going to live this down. She has an incredible way of saying my name whenever she's witness to these events which sounds like I'm being told off - half way through a fall I'm often tempted to yell back "it's not my fault" but never quite manage it.
(the idea of 16-32-64 came to me on this holiday because I felt treated like a kid so much)
16-32-64 eighteen
16-32-64 seventeen
Sunday, 19 July 2015
16-32-64 sixteen
Saturday, 18 July 2015
16-32-64 fifteen
My dad's desk; from before I can remember anything else, has been huge, imposing and beautiful. Leather top, deep, dark wood that looked more expensive than anything else we owned - so masculine. He was given it as a parting gift from a job before I was born, and it's been synonymous with his working life for me. Many, many hard grafted hours spent. It's been to and from his workplaces and homes; quite a bit of mileage - and these few years later it's starting to look it. He recalls having it refurbished once in the past to tidy up the beautiful leather top; and now I've just organised to have it done again. And this time, once it's ready, it's coming to me.
The design is known as a "Partners desk" and he thinks it was a few thousand pounds new when he first sat at it 35 or so years ago. Skipping to twenty years ago (probably between being moved from office to home / the reverse) he paid about £500 to have it worked on. I've just agreed to £850, which I think is very fair considering the time passed and inflation! Probably a much less common job these days too; I was willing to spend up to £1,000 and am very pleased not to need to, and that collection and delivery are included.
Having retired in the past few months and deciding to recreate his home into something much less working-environment (he's been working from home for ten years now, and in his current place for eight), Pops decided it was time to retire the desk and get something that will fit in better with his into comfy space. There's a new huge couch on order and a small, discrete desk for his two monitors (some things he won't give up!) as well as other homely touches we're putting in with the change. It's going to look great, but the desk wasn't part of the new plan. I couldn't let it go - it's been around too long and boy, do I miss having a desk. I've had a variety of tables and chairs since I moved out of my parent's place ten years ago and underused them all; but it is having left work I realise what I want is a DESK. And this is a desk and a half.
A full metre deep, two metres wide. These are the 'before' photos we've sent the nice man at a local reproduction/antiques shop, who has organised all this for me. Thanks Stephen.
Update when she's ready to come to her new home; lets see what their magic can weave!
Wednesday, 15 July 2015
16-32-64 fourteen
Feel like a proper little old lady today - unable to lift what I want; unable to use a screwdriver with my dodgy elbow, unable to be trusted with my shoulder and nagged by mum every time I lifted something.
And now I'm frightened of my new telly, which having set up I'm only just realising all the things it's going to be able to do that I don't yet understand. I actually wish it was less complicated - how 'Nan' is that?
Exhausted by building a couple of bloody storage units - two evenings used up and we still haven't put together the drawers. Which by the way are only three in number, and somehow I'm left with fifteen bits of wood. Wait, what? It's just a couple of drawers. That will get done at the weekend. If I don't have a breakdown by then.
Off for a nice shower and an 'early' night. Yep, definitely 64 today.
Monday, 13 July 2015
16-32-64 thirteen
Lying in bed late last night pondering how tiredness, sleepiness and fatigue - three very separate things to me - are rarely compatible with good quality sleep.
Example being that since having Whole Brain Radiotherapy (known as WBRT), I get tinnitus when I'm tired.
Last night, it was too loud to sleep.
Sunday, 12 July 2015
16-32-64 twelve
The kind of comedy of errors that would only befall me in the middle of summer, organising a picnic for friends in a park. Today is not looking great.
Feeling 32 today and looks like I can't even organise a piss-up in a brewery these days - I miss the old me that found this not just a breeze, but stressless as well.
Last year my Pops and some of my colleagues bravely signed up to the Walk The Walk charity fundraising challenge of 10k walk starting-, finishing-in and looping the streets around Battersea Park. It was a fabulous day, and we ended with friends and family meeting at the finish line to celebrate and relax in the sun. The walkers were all exhausted having not realised how much care and emotional input they had dedicated to the cause until the end; but the pride in their faces was wonderful.
This year we tried to do the same, with less emphasis on the fundraising and more on an afternoon in the sun. It was agreed that those able would do a 5k walk this time, and meet the rest of us for a picnic. The first problem I've come up with is that a few weeks ago due to a low number of sign-ups, the walk has been cancelled.
Next is the timing; I get that this is a Sunday in July - height of Wedding and BBQ Seasons so the few early conformations I've had have become increasingly vague, and those who have are now so random I don't know if enough people will even know each other, having come from different areas of my working life.
So, the weather for the first time in weeks is showing daytime rain (which my garden desperately needs, but we do NOT) and it's cooler than you'd like for a day outside... I'm generally coming to the conclusion that we are going to be rained into the cafe in the park - at least I've directed to meet there!
Lastly, on my way to the station I left myself half hour for supplies from M&S - admittedly now no point since we aren't going to be able to eat our own food in a paid establishment - but it was just typical that my local M&S doesn't open until eleven on a Sunday. I practically broke my nose finding out in front of a surprisingly full bus stop of people.
So I've been at the station for half hour cataloging this day before it's even started - do let's try to be positive, I'm telling myself. Like I said, I miss the way I used to be able to do this kind of thing anxiety-free but I guess I'm out of practice. Let's hope this comes together in some way and we'll be covered by simply being "very British so we can fight the rain!" as my friend Toria had just reminded me!
Edit - of course it went down fine. Ten people turned up, some with food and some without expecting the same as I did. We were all very glad not to have to rely on the cafe for anything but drinks - an extremely old-looking pile of food was being set out under heaters for a BBQ with incredible prices like £7.50 per stuffed pepper!
Anyway, good to meet George the dog finally, plus see a few friendly faces - all in all a good afternoon for all.
Saturday, 4 July 2015
16-32-64 eleven
Feeling 32 today - mad shopping spree online that only _I_ could do; as my family would say.
John Lewis, with the help of my friend Holly - new TV:
Panasonic Viera TX-39AS600 39"
Two shelving units from this new range at Next:
Chiltern Tall and Small Shelves - the latter of which I intend to use as a TV stand.
And then some pretty bedding and a few other bits...
I've been stuck indoors with tiredness and the heat for a few days; napping at random and trying not to feel sorry for myself. Going out daytimes has been a no-no with temperatures hitting 35' in the centre of town one day. I had to go up for chemo on Wednesday but avoided all else - hopefully by the time I have my MRI on Monday it'll be cooler than it is today - another 26'.
Two people have died in my cancer world this week. One lady I met at group - L, who has been in hospice care or St Thomas' for most of the past few months. I don't know the details yet - I haven't been for two weeks because of sickness and the heat, but it will be hard to learn more. Knowing someone even only for four-six months is very intense in a support group situation, and I'm going to miss her a great deal.
Another lady from the online-only Facebook group I'm part of died extremely unexpectedly; experiencing a pulmonary embolism after an elective surgery to have her ovaries removed. She lived in Thailand and died the next day, out of nowhere, despite the best care offered. Heartbreaking; and hard to hear about.
Support groups feel a bit like a marriage in this way - for better or worse - you get amazing responses when you need help, have questions or just have a rant in a forum that people know about it... but it hurts when someone gets sicker or dies. Better or worse.
Wednesday, 1 July 2015
16-32-64 ten
What's it like in the chemo unit?
It's peaceful, relaxed, and less like a medical unit than any of the clinic rooms I regularly visit. If you've got to come, this is the place to spend a few hours hooked up to a poison.
Weather is said to be the hottest of the year today - I sat at the station for twenty minutes waiting for a train that ended up being delayed with no further info, so caught a cab from outside in the end, and enjoyed air conditioning all the way here. I was starting to get a bit of a headache by the time I arrived - 45 minutes is very good though, and the taxi driver was happy to ignore me in favour of the Wimbledon reporting on the radio, which is what I like.
Back to the chemo unit - they're running late today so it's taken me half an hour to get hooked up to my first drug, but the two only take 45 minutes combined these days so I don't complain. I should be out of here within the hour now that things have started up. Should have nipped to the loo first though.
Patients are settled into huge pleather lazy-boy type chairs which you can lean back or have your feet raised at the touch of a button, and every patient chair has at least one beside it for a guest. Most people come with someone, or bring some entertainment - magazines, book, phones and tablet PCs. There's a lovely element of calm that the staff have always maintained whenever I've been here - if you're at extra risk, or the drugs make you sick or some other reaction, there are lots of side rooms you can be secreted into to keep everyone else comfortable as well as you. A lot of thought had been put into this unit; it'll be interesting to see what they use it for once the team moves into the new cancer centre being built.
It takes a few goes to get used to walking with a drip stand - if you've spent any time in a hospital you'll know all about it. It amuses me to guess how many times people have been here when I see them dancing around it on the way to the loo. If you're here between 12-1pm or after five, the sandwich lady comes around with a small selection, plus teas, coffees and cold drinks. It's basic, but they don't have to and I think it's a lovely gesture to even us outpatients. Visitors pay but it's all cheaper than it would be at the AMT coffee or even the Sainsbury's downstairs.
Trolleys of needles, dressing and saline are mostly kept out of direct view, and our bags of infusions are kept in fridges until you're ready for each one. Some of them are mixed in the day and so time-sensitive that you have to have them within a few hours time-slot. I've been sent away once due to an expired drug - a big deal when these bags contain thousands of pounds each! I've heard the toxicity of some chemo is so strong that a 'chemo spill' (broken bag, tube or similar) is a major event and must be reported to the highest names. Goes in my bloodstream fine, but dangerous to the skin? Frightening!
A constant beep beep in the background - always someone's infusion unit going off, telling the nurses is time to switch bags or something not working. You do tune it out eventually but it drove me nuts the first few times. Hushed conversation - sometimes you're in a friendly corner (the unit is broken into four patient sections, so you gave inward to each other from four corners of a fifteen foot square space) and get chatting, especially if there's more than one of you alone. Often I insert myself into conversation if I think I can give some useful input (and I don't think it would be unwelcome, obviously!) - having had so much experience and such a common cancer fares well on days like that. Today the two ladies also being treated are snoozing in their comfy chairs and the daughter of one is staring at a magazine barely flicking the pages - either she's angry or nervous, I can't tell which.
I think that's a pretty good overall description. I can't really pick an age today, I guess I'm 64 again because of coping so badly in the heart, even if it is quite a pleasure being in here with a fan and the car earlier. I'm going to try getting the train home, we'll see what things are like at London Bridge when I'm ready to leave before I make a decision. Why there are such problems caused by the hot weather is beyond me - hotter places manage to have trains don't they?!
P. S. - the red bag is to keep sunlight off the drugs - the smallest things can effect potency I'm told!