Posted by: John Colby | Thursday August 22 2019

Sandy’s Treatment – Day 247

Sandy’s Treatment – Day 247

Cross match blood test for the transfusion. We got there, no one knew about us. After two receptions we were eventually directed to the assessment unit, where they prepared to admit Sandy, who was having none of it. Eventually got sorted, and we came home. Sandy was tired because of the expenditure of nervous energy.

We’ll have the pic of the blood test room again. When I put this on the Science Funnies Facebook site it got more reaction that anything else I’d posted.

MedicsHumour

Bank visit to get myself on e-banking. Sandy’s dealt with all our finances for the past thirty five years, but now she can’t. Cancer of her severity does that to you. Very nice person who’s dealt with Sandy for a long time, got me on and sorted.

Then the pharmacist as they were just ringing me to say that Sandy’s prescriptions had been completed. They’re good. Mentioned yesterday that I’d be on Frequent Flyer rates.

A couple of hours at home then off to son’s – his birthday. And it’s the 534thanniversary of the Battle of Bosworth. We took Kerry as son’s wife loves her and Kerry doesn’t mind the attention.

Story here. When we moved to Bosworth we got involved with Bosworth 500, the celebrations of the anniversary of the battle. I had an early Mac, which produced graphics, so I was the publicity guy. Sandy got pregnant. The anniversary of the battle is 22ndAugust. The previous weekend there was a medieval banquet, in costume. After the banquet Sandy was coming out of the loo and a spotty monk came up to her (our doctor) and said, “If you haven’t produced by Friday I want you in my office.”. That was Saturday.

Monday, and Sandy felt odd. Went to the GP unit in Kirby Muxloe (another connection with the Plantagenets, the castle was being built by William, Lord Hastings, Edward IV’s Chancelor). Examined, sent home.

Tuesday – I went into work, nervously.

Wednesday I stayed home. Did the last of the publicity for Bosworth 500 and delivered it. That was 7PM. Got back to the car and it wouldn’t start, not even a clunk. Drifted it down the hill and got Sandy’s car ready. It hadn’t been started for two months and wah a hard suspension MG. It started.

9PM “I want to go in”. Do I drive fast with the bumps or slow? That time she was kept in, and it was a slow old night. In the middle of the afternoon our GP arrived and broke her waters, then things started progressing. After 22 hours of labour Richard arrived at 8lb 12oz – eye watering. Apparently just before the last session started the nurse said “Won’t be yet, I’m off for a cup of tea.” Immediately after she left the room, Sandy said “I want to push, get her back.” I said, I’ve been told many times, “You can’t, she’s just gone for a cup of tea.” I got her back.

So on 22ndAugust 1985, the five hundredth anniversary of the Battle of Bosworth, an event we’d been preparing for for eighteen months, we missed it.

Supper included some of the extra calorie, extra protein dietary supplement. It doesn’t tast of anything, got mixed in with her supper and she ate it.

Tomorrow it’s early up blood transfusion, so I’ll be taking advantage of the Eduroam WiFi as it’s a teaching hospital and it’s an academic network. `Hopefully she’ll have more energy. We’ll see.

Music: Einojuhani Rautavaara – Cantus Arcticus (1972) – for birds and orchestra

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Posted by: John Colby | Wednesday August 21 2019

Sandy’s Treatment – Day 246

Sandy’s Treatment – Day 246

GP today – double length appointment, but she ignores appointment times anyway rather concentrating on the needs of the patient. We have a lot of time for her. She has a lot of time for people.

During that visit she organised a blood transfusion for Sandy – Dracula tomorrow and transfusion Friday, super quick. Hopefully this will be able to energise her a little. We also discussed future care and Sandy made her wishes known. We hadn’t discussed anything before but now it’s decided according to her wishes. She’s doing anything she can to lighten my burden.

We go back to see the doc in a fortnight.

Thank you all once again for the messages. Yes, if we need anything, we’ll ask.

Sandy suggested when we got back from the hospital yesterday that we should have a family get together. See’s been rather in isolation for months because of the possibility of infections. I mentioned this and suddenly it’s taking off – not large, not noisy, just a meeting all together somewhere. Last time we were all together was at our great-nephew’s christening in December, after Sandy had been diagnosed but before chemo started. The family’s organising it.

Sometimes not really sleeping so I’ve been reflecting on what Sandy’s done over the past thirty five years.

We met through the Open University, and were involved with the quincentenary celebrations for the Battle of Bosworth. We’d been planning and doing for eighteen months, but missed the day because our son chose to be born on the day of the anniversary.

Forward five years and we graduated together, both BA (Hons) hers in mainly Psychology and mine a mix of Systems, Maths and Earth Sciences. She then went on to do another BSc, mainly Earth Sciences, and then an MA in Archaeology and Heritage from Leicester. She has three degrees, but that doesn’t make her a1970s pop group.

For a decade we ran geological field trips all over the country, from the northernmost tip of Scotland to the Lizard. All this time Sandy was a school secretary. Just after our last field trips I started at the University of Central England, which became Birmingham City University. We’ve been camping and caravanning for holidays for a quarter of a century, but we both started camping in the 1960s. It was a bit more primitive then, not to say tents were a darned sight heavier.

Over the years we think she has participated in about twenty two Race for Life events. She started when they started. Think she’s raised about £3k over the years for Cancer Research UK.

For her MA dissertation she studied the Non Conformist (mainly Methodist) buildings of Kerrier and Penwith (that’s west Cornwall) and was hoping to do a PhD, but the supervisors never materialised, so with her lifelong interest in sewing she started a two year course to become a judge for the Quilters’ Guild. She completed it and was appointed a judge while she was undergoing chemo.

Another Richard III connection was when his body was discovered, and I took her out for our thirtieth wedding anniversary in 2015 – standing on the side of the road in Market Bosworth watching the cortege come past from the site of the battle into Leicester. Don’t say we don’t know how to live it up!

During chemo she’s also completed a number of sewing things both for us and to give away. We’ve blogged some of them previously.

Future? Day at a time. Our plans for a retirement together are now at nought. Renew kitchen, bathroom, central heating, that sort of thing. It’s what life is dealing us and we just have to accept it. It’s a waste of energy railing against it.

It’s our son’s birthday tomorrow so it’s off to visit him in the afternoon. Before that it’s blood test at the hospital and me meeting at the bank. We still know how to live it up.

And yes, I am looking after myself – trying to eat correctly, trying to take enough exercise.

We’re now in the region of 90-100,000 words on this blog. A doctoral thesis is about 50,000 words, so this is a couple of theses worth that I wish I’d never had to write.

A comment on yesterday’s blog said “enjoy every single bright moment as they come.” This is from someone on a forum I’ve never met – indeed they’re in a different country. Thanks, Dominic.

One such bright moment was delivered while we were at the Doc’s, a box of flowers from the Isles of Scilly, sent personally by Amanda from Wheal Rodney, carnations and agapanthus. During this whole process from diagnosis it’s the first time I’ve seen Sandy in tears. We’ve known Amanda for fifteen years, and she’s the instigator of the Christmas jokes and happenings. We try to outdo her every year. This year she wasn’t expecting anything like Wodney.

AmandaFlowers

This evening I had a conversation with my cousin in Plymouth. They’ve been in and out of hospital. It was their fifty-seventh wedding anniversary yesterday, and I found from the family archive a photo of his father and mother on their wedding day, 1937 I think. Communication will ensue with their daughter.

They said, during the phone call “you have too much to be bothered with that now.” Wrong. I need the diversion, I need something to do. I’m writing the books, I’m preparing teaching material, but I can fit more in. I do things that I can drop quickly to respond to what Sandy needs. I can’t embark on stuff that takes room, that disrupts the normal running of the house. The kitchen should have taken a day, two, tops, had I been able to gut it and rearrange, but needing to keep things operational all the time means that I have to carefully plan what I’m doing and split it into small chunks.

Music: Back to the Baroque. VOCES8 in rehearsal – Jubilate Deo – Giovanni Gabrieli.

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Posted by: John Colby | Tuesday August 20 2019

Sandy’s Treatment – Day 245

Sandy’s Treatment – Day 245

Roses

Not good news about Sandy. No further treatment is possible, palliative care when necessary. The doctor said 2 – 3 – 4 months.

Some people reading this have already received this news, and we both want to thank you for the kind comments and wishes.

Let’s just go into a little more detail about the chronology of the last year or so. This is then end of the thirty fifth week of treatment.

Sandy’s been having a bit of digestive indigestion trouble for a few years. It’s been treated with various mild drugs, She’d also been trying to lose weight because of diabetes. The GP suggested that the digestive problems were due to a hiatus hernia. Then her weight fell alarmingly quickly an endoscopy was organised, marked urgent. That’s when the oesophageal cancer was discovered.

It was at first thought to be operable, and a CT scan suggested this was so, but a subsequent more specialist scan with a radioactive tracer showed that there had been a multi-organ spread into liver, kidneys, lungs and bones. Chemotherapy started just before Christmas.

Another test showed that Sandy caries a mutant gene, so the chemo was changed, seven three week long sessions in all, but with a week long hiccup because her potassium/calcium levels were low, Following that we had three session of a maintenance drug, then a blood transfusion because the blood count was low before our first holiday. Managing to get around the Sidmouth area and the Donkey Sanctuary was great.

A few weeks later and it was to Cornwall where she was able to give some of her quilting as gifts to the people at the campsite. We’ve known them for years. Then after a few days back for chemo. That’s when they kept her in and fitted a stent as she was bringing everything back, fluids and food and consequently losing weight again. That appeared to work, and eventually we returned to Cornwall. The last few days of the hols Sandy couldn’t leave the caravan, a week at home and she agreed to try to see the consultant early. That was today.

We got a wheelchair to get her from the car park – previously she’s been determined to manage without.

This morning her bloods were fine, kidney failure has been reversed, blood counts are OK, liver function OK. Feeding, drinking improving, needs more work (imagine that in lecturer voice).

The consultant said that giving her more chemo, because of the spread, would give her greater discomfort and would very probably be detrimental both for quality of life and its longevity.

What now? She wants to go out. The weather’s find for the weekend and she’s suggested Hailes Abbey in Gloucestershire. We’re borrowing a wheelchair for her.

The future? We don’t know. We’re taking a day at a time.

The pic? Yes, some roses I picked up for her while shopping. It’ll be no use later, let her have the joy of them while we can.

If any of you reading this know of anyone who needs a little cheering up, then do it. Maybe it is flowers, maybe it is paying for someone else’s meal, maybe it is giving a bottle of water to a homeless person, or some biscuits to their dog, It’s that phone call you really should have made, maybe it is … – you know, it’s up to you. Just do it.

Before it’s too late.

Music: Ralph Vaughan Williams – Fantasia on a theme of Thomas Tallis in Gloucester again. This is for me. I need it.

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Posted by: John Colby | Monday August 19 2019

Sandy’s Treatment – Day 244

Sandy’s Treatment – Day 244

Sandy still about the same, so we have an appointment tomorrow with the consultant. The blood test was organised by our own surgery – turn up and we’ll fit you in. They did. Thanks to them. In the waiting room just on front of us there was a woman complaining loudly that they had been waiting half an hour past their time for an appointment. They obviously haven’t had to deal with serious medical conditions and the necessity for sometimes an extended consultation. She was severely getting on my wick but I restrained myself from saying anything.

Pincushion Sandy and we’re off to see the Wizards for 09:30 tomorrow.

Then a day of clearing up and organising spaces. But first it was finding the spaces. Some of that space was liberated by reading the use by dates on a few products, realising just how long it was since the kitchen had this kind of tough love. Looking back, Sandy was just not up to doing things for some time before her cancers were diagnosed. I put it down to her needing to get her quilting judge qualification which took time and effort. I think we both were trying to do things that would contribute to our joint retirement that we overlooked other things. Maybe I should have seen something but hindsight is always 100% accurate.

Supper for Sandy made, mine is leftovers.

In this context I’m eating food that Sandy had expressed a fancy for but then it came to it didn’t want, or that I had to buy the minimum quantity that Sandy had no chance of eating before the use by date. Tonight, for instance, it’s grilled lamb, asparagus and tadka dhal. I have to make sure that I have a balanced diet and my five-a-day.

Reminds me of the time I want to Dublin for my previous company. We were getting bugs in the software from the writers (who were in Dublin) and it wasn’t being solved. One Thursday night, late, we were getting fed up and I blurted out, in front of the technical director, “I’ll put the server in the back of my car and take it there!” Monday I was up the A5 and on the ferry. Tuesday I arrived at the office to the south of Dublin. Ten minutes later the server was up and running, ten minutes after that they discovered the problem. Half an hour after that it was complete. The rest of the day was spent sitting round, apart from lunch, which was taken in a pub near Dublin racecourse. Lunch was from a large servery, and while I was deciding what to have it was suggested that I have “a bit of this and a bit of that” where they took a large plate and went from one end to the other adding a bit of everything. It’s the only time I’ve had steak and kidney with chicken curry and moussaka, as well as a load of other things, on the same plate. My booking back wasn’t until the late evening ferry to Holyhead, so kicked my heels for the afternoon, had a meal in Dún Laoghaire and drove back.

Later on I was offered the chance to take a server and do some training in Lisbon, but that never materialised.

Tadka dhal, by the way, is not to be confused with tarka dhal, which is a little otter.

We’re going to be up early tomorrow for the hospital. We’re taking a bag for Sandy in case she has to stay.

The pic is from a couple of years ago.

SelfieTwoYears

Music: Eternal Source of Light Divine – Elin Manahan Thomas, Crispian Steele-Perkins, Armonico Consort

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Posted by: John Colby | Sunday August 18 2019

Sandy’s Treatment – Day 243

Sandy’s Treatment – Day 243

Woke to sun, breakfast to rain, clearing up to sun again.

Sandy’s about the same. We’re going to try to see the consultant this week instead of next. Phone call tomorrow.

More kitchen clearing today. The dishwasher was and is being exercised.

Took Kerry out into the woods fields this afternoon – dry enough now. Except, that is, in the bottom corner. Trousers now need to be washed.

Wheat ripening. No sign of Theresa May, praise be.

WheatRipe

Woodland understorey is being productive

Blackberries

Foxglove

Foxglove

Clouds across the wheatfield

Cloudscape3

Cloudscape2

Grumpy Ent

Ent1

Lopsided Ent

LopsidedEnt

Came across a report about dyslexia and dyscalculia from Queens University, Belfast.

Key Points:

  • Study of 2,421 primary school children over a number of years.
  • 108 had been diagnosed with dyslexia, so researchers expected a similar number to have been diagnosed with dyscalculia.
  • However only one had been so diagnosed.
  • The study indicated that 112 children likely to have the condition.
  • They found that 80% of the children likely to have dyscalculia have dyslexia or some other condition.

As I understand it diagnosis of dyslexia then tends to compartmentalise the child and other conditions are not searched for.

I have just asked the question of my university whether we test for dyscalculia. If we could we may be able to help more students.

Supper – roast chicken. Carved for me, more processed for Sandy. Special request for my gravy.

Tomorrow – see how Sandy is then more clearing up. Dishwasher expected to be fully employed again. Yes, it is taking a long time.

Music: In honour of the walk today – Smetana: Má Vlast: Aus Böhmens Hain und Flur (From Bohemia’s Woods and Fields) – Harnoncourt – Chamber Orchestra of Europe.

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Posted by: John Colby | Saturday August 17 2019

Sandy’s Treatment – Day 242

Sandy’s Treatment – Day 242

The alarm didn’t wake me this morning. That may have had something to do with me not turning it on.

Sandy – quite tired as she’s not sleeping. However breakfast, then me going out hunter/gathering to Sainsbury’s. That accomplished, and via a clothing emporium for Sandy. It all took time. Got a refund on the food processor, so have resurrected the previous model until I can make sense of the Amazon offerings.

Traffic saw an impatient 4×4 driver come up very close as I was passing, with the cruise control set to 70 on a dual carriageway, so I moved across left. It was only when he passed that I saw he was towing. The speed limit for towing vehicles on a dual carriageway is 60, to save you looking it up if you don’t tow. Then as I’d pulled out to let traffic from a slip road join the A5 a white Merc passed me on the inside.

I mention this because a dissertation student I had last year looked at the effectiveness of drink driving ads. She concluded that although the ads were effective they weren’t targeted to be most effective. Probably the same in these cases.

Home to decrease the entropy of the kitchen, gathering similar objects to store. Didn’t know we had so many bottles of various liquids, none very exciting. However immediately I find a space I found something to put in it. It’s like one of those puzzles of sixteen tiles, fifteen of which are occupied and you have to make the picture. Except of our sixteen tiles twenty-three or more are occupied.

I asked a question on Facebook today.

Of the males who answered “Yes” to the question “Does my bum look big in this?”, how many survived?

I have not yet received any answers, so at the moment am assuming “none”.

Supper was had, dishwasher was energised, tomorrow more entropy related kitchen exercises.

Music: Stars – Ēriks Ešenvalds, 2 versions

A phrase has just come in into my head listening to these two – the sonority of spaces. Really don’t know what it means but it sounds kinda posh/pretentious enough.

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Posted by: John Colby | Friday August 16 2019

Sandy’s Treatment – Day 241

Sandy’s Treatment – Day 241 

After I posted last night, combination on contrails and moonlight from our back garden, I’m always getting surprised that the software associated with iPhones will pick this sort of thing up.

Contrails

Now officially on vacation.

We were supposed to be taking the caravan to Devon today for a week near Sidmouth, but with Sandy’s state of health we cancelled and are now spending the leave at home. Home does need attention, so may be as well. And the weather was not good journeying weather to pitch a caravan, so maybe for the best.

Sandy’s not feeling as yuk, she’s still sleeping but her general alertness and speech has improved. She’s starting to get bored, which is a good sign. She appears stronger, able to get up the stairs faster and come down them without my help.

The kitchen suffered my onslaught. It started fighting back but I won in the end. For Pete’s information, the latest date I found today was 2014. Things were consigned to the bin, stores consolidated from various places and the caravan, so we now have a partially working kitchen. It’s about half done.

Part of the reason for the lack of speed is that there’s damn all places to put things when I’m unloading cupboards and I have to be inventive. However this sort of inventiveness also calls for juggling and balancing. On Facebook I asked of there was a collective noun for caffetieres – I’ve managed to find eight. I also fund a load of what is probably useless junk, but it was duly dishwashed and stored. I also found my pestle and mortar. Considering that these re now twenty quid, I consider myself fortunate.

As cupboards got cleared the dishwasher was employed. OK until a toughened glass drinking glass decided that it didn’t want to stay together. Cue half an hour extracting glass bits from the dishwasher.

Amid this Sandy wanted a beef stew for supper, which meant that so did I. Quite simple, assemble it, cook it and leave it simmering for a couple of hours. This time I had to be careful not to dump unwanted stuff in it from the cleaning. I didn’t.

Other than that Sandy’s thankfully showing signs of improvement. She’s certainly more animated when she’s talking. And she’s stayed awake longer today.

Tomorrow, more of the same. Need to nip out shopping as the food processor I bought just before we went to Cornwall for the second time has decided to part company with itself. Plastic fatigue. Fortunately I still have the box and receipt (somewhere). Probably get a stronger one.

I feel more confident about leaving Sandy by herself now that she can get about better. We still have another week before we see the consultant so hopefully she can get her strength up a bit before then.

Music: VOCES8: Angelus Ad Pastores Ait – Hieronymus Praetorius – not to be confused with the better known Michael Praetorius, not related but contemporaries.

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Posted by: John Colby | Thursday August 15 2019

Sandy’s Treatment – Day 240

Sandy’s Treatment – Day 240

Sandy still feeling OK, not as concerned about her. Breakfasted and trying coffee.

I’m sorting out work stuff, getting to where I know what I’m doing for next term. And doing more to the book.

Sandy fed, drank, rested, and then this evening I went shopping.

Supper – thankfully a greater volume for Sandy again. Inspiration struck on flavour additions, and apparently it was just right.

Then clearing up and resurrecting the kitchen from its normal state of dump. The dishwasher is being utilised quite fully now that I have the time to do a load of clearing. More of this will happen tomorrow as then I’m officially on annual leave.

Not much more to report. Traffic on the way to and from shopping behaved, save for one BMW driver who thought that while I was turning right I shouldn’t be stopping just before a roundabout for traffic already on the roundabout, so nipped up in the left hand lane sharpish to turn right. The traffic on the roundabout, which as aforementioned I’d stopped for, did not fully appreciate his need to treat Tamworth as if it were Brands Hatch, and had to apply brakes like rapid.

Memory from a couple of years ago – Sandy and Kerry on the beach at Exmouth.

21105908_10155619542562200_2128909893159022232_n

Musical joke.

Q: Why are sopranos most at home when on the ocean?

A: They can easily reach the high Cs.

Music: Two versions of the same tune tonight.

O Waly, Waly – Trad. C17 Scottish Folk Tune (arr. John Rutter)

Laura Wright – O Waly Waly

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Posted by: John Colby | Wednesday August 14 2019

Sandy’s Treatment – Day 239

Sandy’s Treatment – Day 239

Sandy was up this morning saying she felt better. I went to work, exam boards.

M6 was a mess, so went off to an alternative route. Then it rained and walking down to our building was a bit damp, so diverted to the coffee pod. One hazelnut latte later and I was more ready to face the world.

Then it was exam boards. They’ve changed the regulations so we had to be careful to be consistent. Pleased to say that under the new regs we’re able to recognise more effort that the student have put in. Exam boards are now finished for me for this year.

Then a couple of Masters Dissertation students to see. They’re good, and will get good grades if they listen.

Journey back was affected by the shed load on the M6 – everyone was coming off and avoiding. Sainsbury’s, then home, expecting to find a flat out Sandy. She wasn’t and ate more supper than she has for the past three days put together. She says she’s stronger, and it getting up the stairs twice as fast as yesterday. And without my help. We don’t know what’s happened, but we’re sure glad it has.

When we travel we put Kerry’s basket on the back seat of the car, and attach her harness to the seat belt. I hadn’t brought it out until tonight. This is fifteen seconds after I’d put it back under my desk.

KerryBasket

I’m now off until after August Bank Holiday, so we’ll see how Sandy improves.

To say that today was a relief when I came home is very much an understatement.

Music: Gerald Finzi – Introit for Solo Violin & Small Orchestra – Op. 6 (Molto Sereno)

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Posted by: John Colby | Tuesday August 13 2019

Sandy’s Treatment – Day 238

Sandy’s Treatment – Day 238

Thirty four weeks since Sandy’s treatment started.

So where are we now. Brutal chemo for twenty two of those weeks which started to show an improvement, a maintenance treatment, then after a few weeks of that the news that the cancers had spread and increased. The maintenance treatment was not working as had been hoped. An oesophageal stent was inserted so that she could eat. After that she is keeping food down but only wants small quantities. It also has to be of a kind that will not block the stent. My culinary skills are being tested, and found wanting. She’s sleeping a lot but only for short periods, and has lost physical strength. Climbing stairs is now laborious.

So where do we go from here? I’m taking another week off and we may be looking to see the consultant a week early. We shall see.

This blog is also about being a carer. There’s no training, except on the job, making sure that you don’t make the same mistake again, but you always do. Making sure that you’re responsive when needed and hand’s off when not, making sure you don’t mollycoddle overmuch, but enough when needed. You also don’t know when medical intervention is necessary, or if you’re just panicking. There’s the routine stuff, the shopping, the cooking, the cleaning, the laundry, when it used to be two of you doing it now there’s only one. And remembering that tomorrow is black bin day, and putting it out.

But you get through. Many of my friends will attest to this as they’ve been through it.

I worked from home today, looking at dissertation drafts, responding to emails, looking at University systems for other staff, planning a new module, contributing to websites. Then I nipped out for shopping.

Tomorrow I must be in for an exam board and meeting a couple of students.

Music: VOCES8: Lux Aeterna – Edward Elgar

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