Saturday, January 30, 2016

This Ain't Kansas, Toto

Last night when I got home, Hero was looking worried.  I assumed that he had disgraced himself and checked in the... ahem... naughty corner.  Nothing.  I checked the bins - no evidence of a raid. Strange.
It was only when I took him out for his walk that he showed me the source of his anxiety:  our log store had been blown into a tree and is stuck in the branches.  It usually sits just through the window from the dog basket, so I can only imagine what Toto, sorry Hero, must have thought when it whirled through the air at the edge of his vision.  It probably made quite a racket too, as the ground was strewn with the wood that had been inside.  Oh my!

Today FL had a few moments of communication.  He opened his eyes a few times and was definitely "present" as he did so.
His golfing pal paid a short visit and rang one of FL's oldest friends on his mobile phone, holding it to FL's good ear so he could hear what was said.  I was holding FL's hand at the time and he squeezed my fingers, I assume to thank us for making that possible.  His old pal was delighted and heartbroken at the same time.  He had hoped to say goodbye in person, but is not well enough to travel.

Later in the morning, FL was clearly in some pain, so I asked the nurses to give him some top-up pain relief.  He was soon comfortable again, sleeping peacefully.

He has not taken in any fluids for 3 days now and his hands and forehead are very cool to the touch. The skin around his eyes is taking on a purple hue.
His mouth is open most of the time and sometimes his jaw moves, as if he was chewing.
I understand that these are signs of "active dying".

I sat beside him for a little longer than usual.
It feels like the end is getting closer and I am reluctant to leave.
But at the same time, he needs to know that he is free to go.
Every night I say my goodbyes, aware that it may be for the last time.
I tell him to look after himself and I tell him that I love him.
There is nothing more I can do now.

Friday, January 29, 2016

The Double Rainbow

Every morning before I set off for the hospice, I take the dog across the fields for a blast of fresh air.
Today we set out on the cusp of an incoming storm.  As I left the house the sun was shining brightly, but by the time we reached the public road, ominous clouds were gathering and the wind was getting up.
As a severe weather warning was in place for the area, I did a quick turnaround and persuaded the dog that it was time to head home, however delicious the haybales were smelling.
We had just reached the garage at the back of the house when the rain hit.
Hero decided to take cover behind FL's parked car, wrapping his lead around the wheel arch in the process.  I was forced to turn back to free him... and as I straightened up saw the most amazing rainbow across the valley.
Thank you, Hero - I would have missed it if you had not become tangled!

I sat with FL from 10am to 4pm, as usual.
He opened his eyes more often than yesterday.
It would have been easy to believe he was getting better.
I am sure he enjoyed my weather report.
Every so often, he stretched an arm over his head, as if he was about to yawn and then leap out of bed to cook himself an enormous breakfast.
But that is not going to happen.

The nurses asked me to come to the quiet room with them, so they could explain the arrangements for when the end comes.
It is my role to make the call to the University to carry out his bequest to the Anatomy Department. It is something he feels very strongly about, so I must make sure it all goes smoothly.
A teacher by profession, he is determined to serve an educational purpose to the end... and indeed beyond.

Thank you for continuing to share this time with us.  It helps a lot to feel we are not alone in this.

Thursday, January 28, 2016

Slowing Down

I have written before that FL was "mostly sleeping".
But this is a different sort of sleep.
This is a drifting in and out of consciousness.
He breathes more slowly.  Sometimes he does not breathe at all for a few moments,before resuming where he left off.  It is not a struggle for breath, it is a peaceful slowing down.
His head is thrown back into the pillows, his mouth wide.  It was frightening at first, when I saw him this morning, but I soon got used to it.
He is no longer drinking.
The nurses moisten his lips with a swab when they change his position in bed.  It is for simple comfort, like everything now.
Sometimes he grasps my hand.
His fingers occasionally explore his woolen blanket as he sleeps.
He woke up properly just once today, as the nurses were moving him, and he saw me standing at his bedside with my knitting.  His eyes focused briefly and I saw a smile flicker across his face. Then he was asleep again.
It won't be long now.

Wednesday, January 27, 2016

Penance and Absolution

I understand now why so many hospices are run by religious organisations.
It makes sense that people dedicated to their faith would have a vocation to care for complete strangers at the lowest point in their lives, with unconditional devotion.
FL's hospice is secular and he would not have it any other way.
But as the final family dramas play themselves out, I almost wish a last-minute religious conversion for him, so that he might receive the comfort of absolution.
He would be utterly horrified by the idea!
But today I took on the role of... what?
A ministering angel?  I am not that conceited!
A social worker?  That's probably nearer the truth.
There he lies, unable to speak, struggling to swallow a tiny sip of water, too weak to change his own position in bed.  Utterly defenceless.  And people choose this time to deliberately inflict pain by digging up the past.
Now?  You wait until now? Unbelievable.

Yesterday he was in such a state of upset that he refused his medication, shut down communication even with me and tried very hard to wish himself dead.  But it is not that easy, and I told him so.

This morning I swept into his room on a mission.
First of all, I read him an email from his nephew: full of reminiscences of fun times, thanking him for being a "top notch Uncle".
He raised an eyebrow and smiled.
Then I showed him an old photograph (from 1981) and told him what I saw:  a happy family, joking together and enjoying each other's company.  And I reminded him that this was how it was, for so much of the time.  That, OK, it was not perfect and that yes, he had made some mistakes along the way, but that anyone who knew them then would have agreed those children had a fantastic childhood and that he was at the centre of that.  That he was a good father.
I had planned to say so much more, but by that point I was in tears.
He took my hand and kissed it.

When the doctor came to seek permission to administer his pain relief through the syringe driver he agreed.

Today I knitted another Vivid blanket square.

Tuesday, January 26, 2016

Bed Bound, Poor Swallow

In the hospice conservatory there is a white board where staff, patients and visitors keep track of the wildlife that frequent the garden: 25 January -  2 squirrels, 1 goldfinch...
There is also a white board above FL's head.
Today it said:  "Bed Bound, Poor Swallow" and I immediately thought of him as an injured bird, grounded by a broken wing.

FL was miserable today.  When I arrived, the doctor was keen to engage me at his bedside, trying to get to the bottom of his refusal to take any drugs last night and again this morning.
"Are you in pain?  Would it help if we gave you your medicines by syringe, rather than you having to swallow them?"
The doctor tried.  I tried.  He did not respond, other than the faintest shake of his head.
The doctor looked at me, but spoke as if she was speaking to him: just press the buzzer if you want pain relief.

I attempted to talk to him, just to say good morning really, but he hardly opened his eyes.  He indicated that he wanted some water, had a sip, then fell asleep.
And so the hours wore on in silence.
Every so often he would signal for water and then subside again.
In the late morning he spoke for the first time:  "I wet the bed". So I buzzed for the nurses and escaped for a coffee in the conservatory.

There, the resident writer introduced me to the resident artist:  "No obligation!  But I saw you were knitting and thought you might be a creative type!"  So we talked about spinning and his family's weaving heritage on the Isle of Lewis, until I was called back to the bedside.

And the day crept on.

It came to be time for me to leave, so I packed up my knitting and my book, and put on my coat.  I offered him some water.  He began to make frantic signals which I did not understand until I realised he was about to be sick.
Fortunately a nurse was just passing the door and we got him into a sitting position before he choked.
She offered him an anti-sickness drug.  He has had it before, when the same thing happened in the night.
He shook his head.
I decided enough was enough.
I told him that he needed to take his medicine, that not taking it would not make it all be over any sooner, it would just make it more unpleasant:  You do not need to be in pain!  You do not need to be sick!

The nurse left us alone for a minute.

I explained to him that if he was not able to make the decision for himself, I would do it for him, that all anyone wants is for him to be comfortable.
At last he spoke:  "But they don't know anything!  They can't do anything to help!"
I replied that they know an awful lot about how to reduce physical pain and that if he accepts their help, he could be made comfortable. But that if he doesn't take his pain relief he will be in distress and there is no need for it!  Physical pain can be treated!

Ha! We both know that his greatest pain right now is emotional.
He is hurting deep inside.
I cannot make it better, however hard I try.

When the nurse returned, he did not agree or disagree with the proposal that he have an anti-sickness injection.  She took the opportunity to install a syringe driver, so that he can receive pain relief in the same way.  She said she would be back in 20 minutes to change his position in bed.
And so I took my leave.
I did a silly dance to the door.
Night night!  No nonsenses!  See you in the morning!
Exactly what I used to say the kids when they were small.

Today I knitted a Vivid Square and began reading a beautifully-written book:  The Fish Ladder by Katharine Norbury.

Monday, January 25, 2016

A Day's Work

Today I did a full day's work from the bedside.
FL was in a slump when I arrived and had been left to sleep.  However, the nurses were determined to straighten him up a bit - literally and metaphorically, with clean sheets and a wash.  They asked me to leave while he protested.
Although I am willing to be his advocate in many matters, I judged that being made comfortable was worth the disturbance. I escaped to the coffee area with my laptop and carried on working.
Later on, I let him know that I had been in touch with his family to let them know his situation.
I offered to act as his scribe if there was anything he wanted to say to them.
After a long long pause for thought, he asked me to "Take a letter" which made me laugh.  Such a wonderful old-fashioned phrase!
He managed a sentence before falling asleep.
And when he woke he had reconsidered his words.
I explained that he was under no obligation to contact anyone, that I would help if he wanted to take the opportunity to say something to someone... but that it is his choice.
He nodded.
I said that I wanted him to understand that he is loved.
That I love him.
He squeezed my hand.
As I was leaving, he asked me to give him his mobile phone.
I am not sure he has the coordination to use it anymore, but I left it within reach.
In case he needs to say goodbye.

Sunday, January 24, 2016

Drinking Poison

FL is convinced that he drank poison in the night, because he awoke with a terrible taste in his mouth.
The only way he can rationalise it is to believe that he drank from his urine collection bag... um... I do hope not!
Doctor Google says this is a normal issue at this stage in proceedings.
I am not sure I like "normal" any more.
So when I arrived, FL was chain-drinking iced water and spitting into tissues.
He was quite "needy" today, with lots of requests for water or a change of position in bed.

Unfortunately for FL (and with no criticism intended of any of the frankly amazing staff in the hospice) there were others in greater need of the nurses' attention.
It was a busy day in the hospice, after three new admissions yesterday.
In the afternoon, an unfamiliar alarm went off and I could hear running feet and slamming doors. Things do not usually happen at a rapid pace in the hospice, because the worst thing that could possibly happen is the thing that everyone is expecting to happen.  People are calmly and quietly brought in... and taken out.
I don't know what happened.

Back at the farm, I have started to make the house into my home.
Instead of tidying round the edges of chaos, I have been reclaiming the space, both mentally and physically.
This morning I set up the kitchen table as my crafting space.
It felt good.

Saturday, January 23, 2016

The Apprentice

There was a new-to-us nurse on duty at the hospice today, and it turned out that she is a friend of one of FL's golf buddies.  I suspect she is always... what shall we say... ebullient? She certainly took a lively interest in FL and I today.
She decided that I was going to be her apprentice and she was going to teach me how to give FL a bed bath.
He winced and closed his eyes.
There was no escape for either of us.
I have new skills, people!

I am not sure she picked the best day for her lesson, however, as he had just finished telling me that he didn't think he would still be alive the next morning:  "I am dying," he explained.  So all the time we were washing him I could not get it out of my head that we were dressing his body ready for the wake.
Oh my.

Overnight, they had given him a new gadget to try to prevent nappy rash.  They call it a Uro-dome, which sounds like a sporting venue, but is actually a sort of condom attached to a collection bag. He didn't know it was there and his face was a picture when I queried his lack of underpants and he took a perplexed peek under the sheet...!
After his wash, he wanted rid of the thing and I can't say I blame him.  Nice try, but... no.

He was awake more today than yesterday, and was managing to sip iced water through a straw.
But he has stopped taking paracetamol as it makes him sick.
The only drug he is taking now is Hydromorphone, the big painkiller.

Today I worked on my Tumbling Blocks striped sock (pattern by Leah Oakley).
The heel flap has a lovely Ribbed Diamond texture.

I showed him my new hat, but he wasn't in the mood for nonsense.
Still, he smiled and waved when I left.

Friday, January 22, 2016

Milk in a Sippy Cup

Today I was surprised to see that FL had his beard trimmed.
The nurses had offered to tidy him up a bit and he either said yes or did not say no...!
The strange thing is, he seems to have lost 30 years in the process.
His head is as pale and cool as marble.  Serene. His wrinkles have almost disappeared.

He was awake for maybe 5 minutes out of the 6 hours I spent with him today.
He did not have the strength to use a straw, so today he was given milk in a child's sippy cup.
The nurse told me that the next step is a "pink lollipop":  a moist swab to hold to his lips when they are parched but he can no longer swallow.

I finished knitting my Qwist hat, a pattern by Melanie Berg.
The yarn is my first real two-ply handspun, a blend of Norwegian wool and bamboo from Fondant Fibre.
When I got home I sewed on the pompom.
I will show him tomorrow:  I think it will make him smile :)

Thursday, January 21, 2016

Toilet Dishtowels

Have you ever had word-finding difficulties?
Where you know what you mean, but you just can't identify the right word?
My go-to substitute is "cauliflower", because it is such a ridiculous word in itself.  Much better than "thingy" or "wotsit".
My poor dear FL has been utterly lost for words this week.
He can barely speak now, as his throat is so tight and dry.  Sign language is helping with simple requests:  "I need to lie on my side now" is a tilted hand gesture, and rounded fingers lifted towards his mouth indicate the need for a drink.
But he had me foxed this afternoon as he pointed soundlessly towards... what?  Where?  I made at least a dozen suggestions, all of which met with a frown and closed eyes.
After taking a sip of water he managed to croak:  "Toilet... dishtowels".
Oh lordy, what did that mean?  Did he want a pee?  A heat pad for his sore ribs?  Something to do with water?  Pillows?
The nurses tried too, until he gave up in frustration.
And then the penny dropped:  "Tissues?"
He smiled - yes!
Who knew?!

It had been another bad night.
It has not escaped my attention that he really struggles at night.  It is dark and he is alone with his morphine-induced nightmares.
He told me he missed me when I was gone.  There was no mistaking those words.

When I arrived this morning, the Consultant was with him, listening to the few words he was able to squeeze out and agreeing with him that there is no need for him to be in pain.  They had tried reducing his dose of Hydromorphone overnight, with bad consequences.

The Consultant explained to me what I already knew:  that he is no longer eating, and drinking is painful.  As his ability to swallow reduces, they will have to administer his pain relief through a syringe.  Food is no longer offered in an attempt to sustain his life, but as a comforting gesture, to make him feel cared for and nurtured, with no real expectation that he will manage more than a tiny taste of something very soft and smooth on his palate.  They had tried mixing his pain medication into a spoonful of yogurt, but he could not get it down.

I know that he is absolutely worn out and weary.  He cannot change position in bed without assistance.  He cannot reach for the drink at his side.  He cannot stand up without the support of two nurses.  He is defeated.  It is unbearable.

So when it comes to be time for me to head home, I try to make it a lighthearted parting:  a gentle kiss, a silly dance to the door and maybe even a chorus of  "So long!  Farewell! Auf Wiedersehen! Goodbye-ee!"  But it is so hard.

Today as I was leaving he whispered, pointing:  "Tablet?"  and by a process of elimination I understood that he wanted his watch.  As if knowing the time will make morning come around that little bit faster.

Today I dedicated myself to my handspun Qwist hat.

Wednesday, January 20, 2016

A Man of Few Words

Starting with the positives:  FL had a shower this morning and had many more drinks today than he has done in weeks.  He has developed a preference for ice-cold water, so I am keeping a bottle in the fridge for him.  He likes holding a heat pad against his sore ribs, wrapped in a hand knitted hat.

From the number of bags of washing in his wardrobe, he seemed to have had a bad night and was wearing a hospital-issue t shirt.  His arms are desperately, upsettingly thin.  But that is to be expected since he has not eaten anything at all for almost a week, and even before that he had only been having a few spoonfuls of food here and there.

The doctor is letting him sleep through the times when painkillers are "due" to try to help him find his own balance.

He was too weak to walk to the toilet today, even with the zimmer frame.

And he had nothing to say to me.  It was a very quiet day.

I did some work on my laptop from his bedside, which was appreciated by those who are having to cover my committees while I am absent from the workplace.

On my way home I collected a stack of library books, recommended by readers :)

So tonight I will be dipping into the following:

The Space Between Us by Thrity Umrigar
All The Light We Cannot See by Anthony Doerr
Beautiful Lies by Clare Clark

I have already decided I cannot bear to read A Man Called Ove by Fredrik Backman as it was making me anxious.  I have the Guardian Review to blame for that one being in my queue!

And I have the audio book of American Gods by Neil Gaiman to listen to in the car tomorrow.

That lot should keep me occuoied!

Tuesday, January 19, 2016

Advocacy and Straws

Today FL had his first bath for very many years.  He certainly hasn't had one since 2004, so it is reasonable to assume he hadn't had one for a while before that.  We have a shower over the bath at the farm, and it is easier to use that than turn on the boiler to heat the water, for the sake of a few shivery minutes sitting in the draught from the skylight.

The nurses and I bullied him into having a bath, because we (and initially he also) agreed his aching ribs would feel much better after a long soak in a warm tub.  However, halfway out of bed he changed his mind and panicked.  I am pretty sure he was afraid it would be a cold and painful experience and he just wanted to stay warm and safe under the covers.  But having got him that far, we decided to follow through.  I calmed him down and the nurses manoeuvred him into the special bath chair, which looked a lot like something from a fairground, with a bar at the front to stop him falling out in the middle of the ride.

He was gone for quite some time and when he returned he was subdued and just wanted to sleep.  I was worried and thought we had pushed him too far, but when I spoke to the nurse later she said he had been smiling and telling them stories about his home town while he was in the bath.  Wow!

He slept through lunchtime and pill-time and the doctor said it was best not to wake him.  At about 3pm, three of his golf pals turned up.  We made idle chitchat for a short while and then I realised that FL was awake, listening, but with his eyes closed.  I offered him a drink of the apple juice I had brought in (thank you to the commenter who suggested the cloudy sort, that tastes like pears!) and he was persuaded to sip some through a straw:  his new favourite gadget that makes drinking and swallowing an awful lot easier.

He then made a little pantomime of pointing at each of his friends in turn, before closing his eyes again.  I knew he didn't want to "entertain" them, but they had driven for an hour to visit, so I didn't feel I could just throw them out.  After a short while, he made it clear that he wanted to go to the toilet, and the pals took that as their signal to leave.  I was reminded of them visiting 8 years ago, when he was first ill, and him saying to them:  "Thank you for coming...  and thank you even more for going!"

After they had gone, he had a few more little drinks and I talked to him as he did so.  He was finding it painful to speak, but he agreed it would be good to see one of his oldest friends, who rang last night to ask me if he should travel up for a visit soon.

I have gradually been letting people know that FL is in the hospice.  He had told me not to contact his family, but it occurred to me that if I did not, they would assume it was my decision not to tell them the situation. They may not respond to my emails, but I have given them the opportunity to be in touch before it is too late.

Thank you for your assistance in locating pear juice, or nectar.
 One of you even identified the nearest branch of Lidl, which I pass on my way home from (but not to) the hospital.  I am going to stop there tomorrow.
I made FL smile when I told him that the only pear juice I could see in Asda also contained broccoli, spinach and kale:  the three green vegetables I love the most, but which he really really dislikes!
I was tempted...!

Monday, January 18, 2016

Pear Juice and Stars

FL was awake when I arrived today, and for a little while I thought it was going to be a good day.  He was moving about with his zimmer frame, with guidance from a nurse, and got from the bed to his chair without incident or apparent pain.

However, he was soon slumped over his table, refusing to drink the "tainted water".  I offered to get him a drink from the vending machine and he asked for diet pepsi.  They only had coke, but he drank half a cup of it.  I then remembered bringing in a pot of prepared pears and offered them.  He brightened up and asked just to have the juice, no actual fruit.  So I strained that into a cup and he drank with obvious relish.

But as the day went on he sank lower and lower in his chair and complained more and more of the pain in his ribs as "agony".  I called the nurse, who called the doctor, and they decided to try a heat pad.  They are still trying to wean him off the opiate painkillers.
They were going to prescribe a "heat spray" until I pointed out that it contains the same ingredient as aspirin, to which he is severely allergic.  The doctor looked dubious "What would happen?" she asked.  "His throat would swell up and he would collapse!" I replied.  "Ah!"
They decided to try a Capsis gel - basically they are going to paint him with chilli sauce.  It might help with the shingles pain too, so definitely worth a try.

I spent most of the day knitting my Starman test knit for Helen of The Wool Kitchen.
I also caught up on some work-related reading.  I have realised that I need to keep in touch with what is going on in the office, even if I can't be there.   Otherwise, it will be even harder to go back when the time comes.

Thank you for all the packed lunch ideas :)  I know that this is the sensible thing to do, but I am finding it hard to be that organised right now.  However, tomorrow I need to stop at the shop to get some pear juice for FL (if such a thing exists) and will see what I can find for me while I am there.
I do listen!

Oh - and a miracle has occurred!  The middle neighbour popped a note through the door with her mobile number, offering to let the dog out if I get stuck in town one night!
I texted my thanks.
Hero raised an eyebrow.

Sunday, January 17, 2016

A Quiet Day

Finished Christmas Day cast-on socks
The first thing to say:  thank you so much for commenting with details of dog-fostering services which might cover my area - I had no idea they existed. Amazing!

However, since asking the question, I have done some serious thinking and came to the conclusion that I need the "excuse" of the dog to get away from the hospice at night.

That sounds terrible!
Let me explain...
I have got into something of a routine.  I get up around 7am, breakfast and shower, gather together anything I need to take to the hospice, then feed and walk Hero.  I take him out on the lead, and let him run free on the way back.  He knows he will get a doggy treat when he gets home, so there is an incentive not to wander off on the return journey :)
Then I drive into the city to see FL.
Visitors are welcome from 10am and I am usually there shortly after that.
I sit in a chair next to FL's bedside with my knitting.  If he is asleep, I listen to a podcast on my phone.
At noon, visitors are expected to leave patients to have their lunch in peace.  However, as FL has not been eating, I have not been leaving him for long:  maybe fifteen minutes, while I get a mug of tea or coffee in the reception area.
I return to my seat and stay there until around 4pm, when I head home to beat the rush hour and with the intention to let Hero out again before it is dark.
My journey takes about 3/4 of an hour each way, depending on the traffic.
I get home, feed and walk Hero and then feed myself.  By that time I will not have eaten for almost 12 hours.  The hospital MacMillan nurse has already remarked that I have lost weight.  It is not intentional!  It has been difficult to look after myself when all my energy has been going on looking after FL.

Today FL was asleep for most of my visit.
He had a bad night of pain after his fall, and the doctor had allowed him to have painkillers on demand.  As a result, he had taken about 20mg of Hydromorphone:  far more than he has ever had before.  I don't think the doctor had expected him to ask for so much and is keen to wean him off it again as soon as possible.
FL did not ask for painkillers all day.
He woke at 1pm and went to the toilet with his zimmer frame and assistance from a nurse.
He tried to sit up for a little while, but was too uncomfortable, so was soon back in bed again and fast asleep.
I offered him water each time he stirred. He took a few sips.

And as I was sitting there, reading the comments about dog-care services on my phone, it dawned on me that if I stayed overnight, I would continue to behave like this.  I would spend the night watching over him, listening to him breathe and reacting to every murmur with an offer of help.
And that is not sustainable behaviour.
If were to stay there 24/7, I would be a wreck within a day or so.
I need to get away, to gather my strength, to eat and to sleep.
I need to keep a semblance of my own life going, readying myself for a future that is not entirely dedicated to my darling FL.

He has been the sun around which I have orbited for so very many years.  Sometimes my orbit has swung quite a long way out, but I have always been drawn back in.  Right now I am in danger of going into freefall if I don't keep a little distance, if I don't remember that I am my own person and that I have to go on living after he has gone.

So I will take care of his daft old dog for him.
I have bought a grooming brush, and Hero was shocked to find himself being de-fluffed for the first time in his life.  If he's not careful, he might find himself in the bath one of these days!

Some of you suggested me taking Hero to visit the hospice.
There is a sign saying that dogs are allowed in on a lead, and I suppose I could open the French windows to let him into the garden to chase the squirrels...  but he is not a socialised dog.  I actually think it would be very stressful for all of us:  FL, Hero and me.
Better that we continue as we are while we can.
I have the local gamekeeper on standby to let the dog out and feed him in an emergency.
I believe that is the best thing, for everyone's sake.

Tomorrow I will have a new project to work on.  I am test-knitting the Starman shawl for Helen of The Wool Kitchen, using her gorgeous Ziggy colourway.
Because David Bowie and my darling have something other than a cancer diagnosis in common:  one brown eye and one blue :)

Saturday, January 16, 2016

A Fall

Grrr... we are not supposed to have sheep...!
So much for a quiet weekend for FL.
It was an eventful night.
He had several episodes of D and V, so was issued with what he is calling "Japanese pants":  made of nylon net, with a disposable nappy arrangement inside. ( I think he is referencing the simple garment issued to WW2 prisoners of war. )
This was all humiliating enough for him, but at 10am he tried to get to the loo on his own (forbidden!) and forgot he had a drip in his arm, so fell badly, taking the stand with him, unplugging the saline solution... and had another dose of D and V in the process.
I arrived shortly after. Painkillers were just being given and the doctor had been called. 
Ironically, he was much more awake today. He is still not eating but is being encouraged to drink.
The pain in his bruised (or possibly fractured) ribs is now the main worry.
Prior to that, his sickness was causing concern as it was blood-stained.
My poor darling is having a terrible time of it. 

He has gone through all his pjs and trousers, so I will have to get them washed and back to him asap.
The (lovely) doctor examined FL, ever so gently and kindly, and concluded that he has "done a couple of ribs". Oh lordy.  FL's rib cage is peppered with myeloma lesions, so is very fragile.
There was a very worrying time when a "sounding" of FL's lungs suggested that he might have sustained an even more serious injury.  However, on a second examination, the doctor was reassuring. 
FL is too frail to consider any intervention. He just needs to rest and ask for painkillers as required.
He said that he had missed me so much in the night... oh my dearest!  It is so poignant that he is able to communicate with me properly again and yet for his words to be so full of sadness and pain.
I may need to consider arranging a foster carer for the dog so I can stay in the hospice with FL. There is a fold-out bed in his room, for just such eventualities.

Meantime, back home on the farm, Hero and I had some unexpected guests this morning.  Next door's sheep decided the grass was greener on this side of the fence.  Grrrr....!

Friday, January 15, 2016


Today I dedicated my knitting effort to the second sock of my Christmas Day cast on pair.

FL had a night of sickness and diarrhea and was just emerging from a clean-up operation when I arrived at the hospice this morning.

He was soon fast asleep and did not stir when his lunch was brought.  I took a break from my watch over him to get myself a coffee and while I was gone, he had to call for assistance to get to the toilet again.  Oh dear!

A little later, a physiotherapist came to see him and gave him a lesson in zimmer frame management. He was surprisingly compliant, probably because he was too tired to argue.
Shortly after that he was plumbed in to a saline drip, to try to get him rehydrated.
More sleep.

At 2.30pm he woke and was clearly in some pain.  I called the nurse, who said that he had not had any painkillers at all that day:  they are trying to clear his system of morphine as they believe it is responsible for his kidney failure.  She consulted the doctor and it was agreed to give him a Hydromorphone "breakthrough" pill.
More sleep.

At 3.30pm I decided to head home to avoid the rush hour and see to the dog before it got dark.
I woke him to say goodbye and he told me he had a new pain, somewhere below his left ribs.  I decided to tell the doctor before I left, and she came straightaway.  It was hard to know where he was pointing, as he was slumped in his chair, and the doctor decided the best idea would be to get him into bed, in case it was simply a case of cramp, caused by sleeping in an awkward position  She was awfully kind, and said she was looking forward to talking to him about his book when he was feeling a bit better.

Her main advice was to ensure he has a quiet weekend, to allow him to recover from the effects of the morphine which she thinks had built up to a toxic level.  His kidneys had not been able to cope and everything had started to go wrong as a result.

And I don't know whether that means there might be hope of recovery from this.  I don't think that kidney damage is reversible...?  It is so difficult not to grasp at straws, to think that this is all just a temporary downturn and that he will soon be back to his old self.  I suppose nobody knows for sure, not even the doctors.

Thursday, January 14, 2016

Welcomed in the Hospice

Today was one of the hardest days so far.

I felt like I was driving my love to the scene of his execution.  He was very reluctant to leave the house and could not bear to acknowledge the dog as he went out of the door.  I thought he would regret it if he didn’t, so prompted him:  "Ha!  Goodbye dog!” he said gruffly.  And as we drove out of the farm road I caught him taking in the view of Bennachie, sidelong, in case I noticed.  In case I thought he was looking at it for the last time.
Which he probably was.

I don’t think I have ever driven with such care and attention.  The roads were icy, on top of recent flood water, but we made it safely.  We got the last space in the tiny car park.  The receptionist showed us to his room:  he has his own room there, with a lovely view of the garden.

We waited almost an hour before a nurse came to talk through the admission form.  In that time, he tried to say the things he needed to say to me, but was stumbling over the words.  “Don’t worry,”  I said “There’s no rush!”  “But I’m on my way out!”  he said.  “Like I said – there’s no rush... you’ve got all day!”  I replied, which got a laugh out of him.

The admission form was the usual stuff about the size of our home and whether there were stairs, and his recent medical history.  And somewhere in the middle of it, I started to panic, in case we were about to be told he was a fraud and how dare we take up a precious space in the hospice, when other people were in greater need!  But it wasn’t long before he started to fall asleep halfway through a sentence, and for obvious waves of pain to pass across his face.  The nurse had to leave twice to administer medication to other patients, and on her second return we agreed that I should answer the remaining questions, to let him rest.

We were given a leaflet setting out the facilities available to him in the hospice.  He smiled to hear that ice cream is available in place of standard meals, if that is all that he can bear to eat.  This had already become my substitute offering when the mere thought of healthy eating made him wince!  And he brightened up quite a bit when he heard that there is a writer in residence, whose sole function is to help patients get their words onto paper.  I persuaded him to bring his book project with him and now he will have the chance to share it with a "professional".  Truly fantastic news!  The burden is no longer mine alone :)

His lunch came at noon, and I was asked to go to the visitors’ room where there was tea and coffee available.  When I got back, he was asleep with his head on the table.  He had eaten only a little, but he had tried.  I carried on with my knitting.

At 2pm, the doctor arrived with another long list of questions.  But she had lots of good answers too:  ideas to adjust his pain medication, to give it as a liquid rather than a pill;  a nebuliser to help clear his chest;  a drip to rehydrate him, now that swallowing is painful.  She really listened to him, giving plenty of time for him to try to explain exactly where the pain was situated, to talk about how hard it is to eat and drink, now that everything tastes like medicine.  And this is the crucial difference between hospital and a hospice:  life is conducted at an entirely different pace.  FL is at last being given the time he needs to try to explain how he is feeling, without people snatching the words out of his mouth and forming their own conclusions.

But it exhausts him to think about his body and how he feels.  At one point he asked to be excused to go to the toilet.  I helped him through, and returned to talk to the doctor.  I checked on him at ten minute intervals, and I am pretty sure he was asleep every time I went through.  It was round about then that I realised that the young doctor had tears in her eyes.  She said it was lovely how calm and patient I am with him.  Oh me oh my, that's when I lost my composure.  Far from them thinking I have been over-reacting to his condition, they totally understand and agree with me:  FL is in a really bad way and is finally in the right place to get the personalised care he needs and deserves.  And I can't bear for that to be true.

Talking to the doctor about how things have been, she told me that his latest blood tests show that his kidney function is deteriorating.  This is the critical factor in the prognosis for a patient with Multiple Myeloma.  She said that he is very frail now... and asked me then if we had thought about whether or not he would wish to be resuscitated in the event that his heart stopped.  And although I know it is a question that has to be asked, it was suddenly absolutely clear to me that he won’t be coming home again.

She was incredibly kind and compassionate.  Everyone we met today was the same.

I stayed until 3.30, when I left to beat the rush hour and to see to the dog.  Hero had been through the recycling bin again and there was a pile of shredded paper on the floor.  He was very glad to see me, and relieved that I wasn’t mad at him.  But he was looking everywhere for his master.  Poor dog.

Wednesday, January 13, 2016


Today was the day when everything happened at once.  Most of it too late to be helpful.

  • the Community Alarm was installed
  • Social Services confirmed he could have a wash once a week from 25 January (!)
  • the District Nurse delivered a commode and a "blue book" for FL's patient notes
  • a brand new shiny "dedicated" GP rang to discuss how FL was feeling today, and pain management...
  • and rang again a little later to say that FL has been allocated a place in the hospice, tomorrow morning
FL slept through most of it.

He stirred at 2.30pm and I managed to tell him about the hospice place, and had a little cry and a cuddle.
Then he slept again until 5.30pm when I proposed late lunch / early dinner so that he might be awake long enough to gather some book-project papers to take in his bag tomorrow.

He ate a little but couldn't concentrate well enough to read.
I printed off the latest draft, ready to pack in the morning.

The nurses have just visited to put him to bed, where I need to join him soon.
Goodnight, everyone.

Tuesday, January 12, 2016

A Vivid Day

Last night we had a visitation from two night nurses, who arrived at 8pm as FL was nibbling at a segment of orange,  They were here to put him to bed, and he was the first of many cases on their list, so there was no time to mess about with fruit!
Once they got him moving, he was swiftly dispatched and was soon asleep.
He slept through to 7am, when I had planned to get up, to reach the hospital on time.
However, almost as he woke, his bladder and bowels decided it was time for a violent movement, and I had no time to fetch the bucket.  Luckily, some of you had warned me that this might happen and his side of the bed was well-padded with towels and a mattress protector, so it could have been worse.
He was sick in the bathroom while I was trying to get him into the shower.
It took over an hour to get him cleaned up and the bedding stripped and into the washing machine, so we were an hour late for the hospital appointment.
But it didn't really matter, because they had decided not to give him a transfusion.
We saw the Consultant, together with the fantastic MacMillan nurse.  I told the stories of what had happened on Saturday and this morning and it all confirmed the decision to seek admission to the hospice.  FL is now in full agreement with the plan.
The MacMillan nurse went off to ring the hospice to find out how near FL is to the top of the waiting list.
Meantime, the Consultant went through FL's drug regime with me, and set about minimising the number of pills he needs to try to swallow.
He has gone from 23 pills a day to 16, and 8 of those are paracetamol.
No more antibiotics or bone strengtheners or water pills or stomach-protectors (omeprazole)

The new regime is:
A half dose of Acyclovir, twice a day (to prevent another attack of shingles)
Pregabalin, twice a day (to counteract the post-shingles pain)
Paracetamol, two tablets, four times a day
And a different painkiller:  Hydromorphone, one capsule, four times a day (instead of the Oxycodone / Oxynorm regime)
He will still take his inhalers as necessary.

The Consultant said that she did not think blood transfusions were a particularly good idea at this stage.
"This stage" is definitely coming a lot faster than any of us anticipated.

The MacMillan nurse brought me a cup of tea and the news that FL is being considered "a priority" on the hospice waiting list (of 4), so it is hoped that he will get a bed within the next few days.
We discussed the possibility of him staying in the hospital while he waits, but the system is such that if he has a hospital bed he is no longer a priority.  The MacMillan nurse said that in practice he has never known anyone make the transfer from hospital to hospice.  Ah.  

So we are home again.  The district nurse has rung to check up on us and to confirm that the night nurses will attend again tonight.  I have their number to call for help if we have an emergency.

So it is still not an ideal situation, but we are less alone.

As I write, FL is asleep with his head on the table.  I need to light the log-burner and then go and make the bed.  I bought another mattress protector in a flying visit to the supermarket on the way home.  And another pair of pyjamas.

Your continuing concern and moral support is very much appreciated.  This blog has brought so many kind-hearted people into my life over the years, most of whom I will never meet, but who feel like friends.
Thank you.

I finished knitting my first Vivid blanket square in the waiting room today.
It is pictured above with some friendly owls and gnomes :)

Monday, January 11, 2016

On the Waiting List

Today was a day of emails and visits and phone calls.
I started my morning with an email to the hospital-based MacMillan nurse, setting out the events of the weekend and letting him know that we are not safe here on our own.  Because that is what it boils down to now.
And as I expected / hoped / perhaps even prayed, the MacMillan nurse did not let me down.  He rang me to confirm receipt of my email and then sent up the distress flare on my behalf, contacting the district nurse, the GP and the community MacMillan nurse to spur them all to action.
A pair of district nurses came at 11am, took FL's blood in readiness for tomorrow's hospital appointment, and asked for the story of what had happened on Saturday night.  They had a look around, to see how far FL has to walk to get to bed and bathroom and wondered about supplying a commode for the bedroom...?  But when they started to talk about installing a hospital bed I began to panic.  They seemed to be saying that we could continue to manage on our own, that gradually he would spend more time in bed and that would make it easier in many ways....?
I explained that there is only me and I can't do it all on my own.  I can't cope on my own.    And maybe that was the admission of defeat they were waiting for.
Was it some sort of a test?  I don't know.  But by the time they left, they said they would be recommending to the GP that a place be found for FL in a hospice or the acute ward of the hospital.
The next incoming phone call was the GP, who had heard from the district nurses that FL was "not so well"... how many painkillers was he taking?
The GP was still on the phone when the MacMillan nurse arrived at the door and had to be let in. The GP told me to talk to her, and to ask her to contact him later in the afternoon, and hung up.
The MacMillan nurse talked to us for a long time.  She asked what we thought she could do for us:  I explained that I hoped she would be able to coordinate some support, because we were getting nowhere.
She said that was not her role:  that this was what the GP was supposed to do.  The polite version of what I said in reply was that he had not demonstrated such skills thus far.  I told her that he had not returned phone calls I had made to the surgery, that he had only met FL on one occasion, so had no way of assessing how he is now compared to how he had been until maybe 3 weeks ago, and that I had not been impressed by the said GP's professionalism on the night of his only visit (the detail of which is not for blogging, but which I shared with her).
Her eyebrows shot up and she declined to comment but agreed that it did not sound as if the GP had been of much assistance in progressing FL's care.
She was concerned that nobody had asked to test his urine despite me reporting to the district nurses that he had not been able to pee for 24 hours and had then produced scarily dark liquid.  At the very least she thought he might have a UTI, but equally likely it could be evidence of his kidneys shutting down.  She was appeased by his report of "ordinary" pee this morning... but nevertheless...
The  ridiculous irony of all this was that FL was completely engaged with the conversation.  Positively perky.  And this made it very difficult to communicate that just two days ago he was incoherent and confused and unable to stand up.  That he had been so sleepy that he had let pills dissolve in his mouth, unable to swallow.  I tried to explain that he spends 22 out of every 24 hours asleep and that I never know how he is going to be when he wakes up - perfectly fine, or totally out of touch with the world.
She frowned, as if she didn't believe me.  And I can understand why - he was presenting as a perfectly normal, if somewhat frail elderly man, who had maybe had a bug over the weekend.  She said she did not see why the hospice had been suggested:  it is for assessment of people with symptoms that suggest they are near the end of their lives, which was clearly not the case or the GP would be aware...?
 I pointed out that the GP had only met FL once, so how could he possibly make any sort of assessment of FL's health?  And that the Consultant at the hospital, who has known FL for 8 years, was the one who proposed the hospice and had made a referral last Tuesday because she recognised the change in him and his rapid decline.  That this was not my idea!
She asked why we did not have nurses visiting, a zimmer, a wheelchair, a hospital bed...?!
And at that point all of my frustration poured out as I explained that I had tried to get help but that I didn't seem to be able to make anyone understand... and how was I supposed to keep him warm in a house that is cold and wet with inefficient heating, or wash him in a wind-tunnel of a bathroom with intermittent hot water... that the only time he gets a wash is when he soils himself in the middle of the night and I have to get him into the shower despite his protests against cold and hot and wet... and what are we going to do when the snow comes and we get cut off for days at a time, as we always do...?!
And somewhere in the middle of the outpouring, she understood my fears.
We are not safe.
I am not coping.
The house is not suitable for an invalid.
And this situation is absolutely not sustainable through an Aberdeenshire winter.
She put down her pen.  And finally it seemed that my words had made an impact.
It would appear that FL's symptoms are not in themselves enough to get a bed in the hospice, but his crumbling home and his crumbling wife most certainly are.
"The whole picture" was how she put it.
It is suggested that we make our own way to the hospital tomorrow as planned, and that his prospective blood transfusion may actually take place in the hospice.  We should take his overnight bag with us when we go.
And FL agrees that this is the only possible course of action.

The district nurse rang a short time ago, to tell me that a nurse is coming to help put FL to bed tonight "sometime between 8 and 10".  Better late than never.

The hospital-based MacMillan nurse rang to find out how the day had gone and what had been agreed, to wish us a good night and that he would see us tomorrow.

And so it is that FL is now on the (short) waiting list for a place in the hospice.

I feel like a traitor.

Sunday, January 10, 2016

Step Together Two Together

Yesterday was going too well.
The postie made it to the farm, so I took that as A Sign that I could escape for long enough to buy the Saturday newspapers and some essential groceries.  There was just one area of flooding between us and civilisation and I drove very slowly through it without incident.
FL had eaten breakfast:  a melange of tinned rice pudding, blueberries and chopped pear with a dash of cinnamon.  He slept through lunchtime, but I am used to that now.
However, when he woke at around 6pm he was confused and incoherent.  He wanted to go to the toilet but couldn't get out of his chair.
I eventually managed to tuck his chin over my shoulder to lift him and we shuffled towards the bathroom.  However, he was falling asleep as we "danced".  I had to concentrate really hard to keep him upright while negotiating doors and light switches.
He detests the raised plastic toilet seat with handles which the Occupational Therapist provided, but I knew that I would never get him up again if he didn't have the rails to lean on.
I left him there for a while to ponder.
But he was asleep again almost as soon as he sat down.
I visited him a few times to try to keep his mind on the job at hand, but he couldn't even pee.
After about half an hour, I decided the risk of hypothermia in our frosty bathroom was too high, and persuaded him to return to his chair.  I am still not sure how we made it there in one piece.
I cooked dinner, but could not wake him to eat.
I tried again at "pill time" but he couldn't open his eyes and was muttering incoherently.
By 10pm I was getting desperate.  I managed to rouse him enough to take most of his pills.  I didn't attempt the bone-strengtheners as there are four of them and they felt like a bit of a luxury when he was struggling to swallow his morphine.
I made his hot water bottle and thought we could repeat the 6pm shuffle through to the bedroom.
I tucked my arms under his, with his chin on my shoulder and slowly stood up.  He was trying to help me, but his legs just kept giving way.  We were almost upright, when he lurched back down towards his chair, but he was too far from the edge and he and the cushions slid unceremoniously onto the floor in a heap, taking the telephone, his radio and a glass of water with him on the way down.
It was a relatively soft landing due to the cushions.
He had his eyes shut, but was still conscious, if confused.
I covered him with a blanket and tidied the debris.
Then I tried to summon help.
We have neighbours, but we are not on particularly good terms with any of them.  I was considering trying the middle ones, who are the most human, when I remembered that there were no cars outside. They had all taken the opportunity to get out while the roads were clear:  the nearest set is pregnant, the middle set work shifts, and the furthest away one is not to be spoken of.
So NHS 24 it was.
It took forever to get through, and then another forever for the operator to find FL on the system.  It would appear that the "new" GP is not yet fully functioning despite taking over FL's practice in October.  The operator eventually managed to identify FL as a "palliative patient" and said she would try to contact Marie Curie for assistance.
This was good news - I thought it might mean FL would actually get some proper support if we were referred to Marie Curie!
However, it was the local district nurse service that rang back.  They were quite reluctant to come out - did we not have friends or family?  Were we really completely alone?!
It took them almost an hour to find us.  I had explained the need to ignore the Road Closed sign, but the nurse was not impressed that this meant she had to drive through some shallow water to reach us.  I had assumed they would have a "proper" car, if their job involved driving through Aberdeenshire in winter in the dead of night, but it was no better than mine (a small hatchback).
One of the two nurses was also phobic about dogs, so Hero had to be shut in the study for the duration of the visit.
However, they came.  They were very efficient in waking FL and lifting him back onto his chair.
They didn't perform any medical checks other than to ask him if he was alright.  He had his eyes shut again by this point and did not answer.
They quizzed me about the whereabouts of his "blue book" (he doesn't have one - should he?) and did not seem to believe that we did not have "carers" or a zimmer frame or a wheelchair or indeed any of the other things I have been campaigning for since before Christmas.
And then they started to put their coats on to leave...
No, stop, please, can you help me get him to bed?!
They seemed quite surprised by my request... even though it was midnight and I had explained that this was how he came to land on the floor in the first place!
So they each took and arm and escorted him to the bathroom.  I said he had not managed a pee since the morning and they agreed that was not good.  But he still failed to perform.  Their mobile phones had not stopped ringing since they arrived and it was clear that he was not the only elderly patient to fall that night.  So after a short pause it was agreed he would just have to go to bed without passing water.
I cannot imagine what they thought of our bedroom, which was still in its post-flooding state, with furniture pushed against the walls and curtains looped up on the windowsills to keep dry.  But it was no time to be houseproud.
Trousers off, legs up, woolly hat on.  Night night Mr Mac.
And off they went.

Today has been ok so far.  He managed a scarily dark pee into a bucket before he got up, and had a couple of spoons of rice for breakfast.
We discussed the events of the night before and he agreed with me that we can't go on like this.
He was still awake when I came back from walking the dog, but fell asleep at about 11am and is still spark out now (6pm).

I have been knitting.

I just have to hope that I can get some sense out of someone tomorrow.

Friday, January 08, 2016

Spinning in The Rain

It was only when I caught the news on TV this evening that I realised why people were worried about us.
Aberdeenshire is awash!
10am this morning
Last night, rainwater started to pour through the kitchen skylight.  The seal is dodgy  and has been for years, but it usually only gives way when the snow starts to thaw.  It is one of those things I need to take control of and get fixed... but it wasn't going to happen at 10pm, so I stuck a sheep-feed bucket underneath, draped the French dresser with bin bags, and went to the bedroom to fetch FL's hot water bottle.
The small puddle by the east-facing wall had turned into a big pond which stretched from the fireplace to the door.
I had to divert FL from his bed-wards stagger while I mopped it up.  It took me the best part of an hour.  I built a dam of towels round the affected area and escorted him through the shallows to the bed, which is at the other end of the room and therefore safe and dry.
We stuck our heads under the duvet and hoped for the best.
3pm this afternoon
This morning I mopped again and got the towels washed and out on the line... because by some miracle it turned out to be a bright and sunny day...despite a light fall of snow!
However, all that weather has cut us off from civilisation.
One by one the appointments were cancelled:

  • Community Alarm?  Next Wednesday.
  • District Nurse?  Monday.
  • MacMillan Nurse?  Monday.
So we are no further forward.
This morning I was at the end of my tether.
But when I saw the footage of the floods that surround us, I realised that we are actually incredibly lucky. 
Some people have lost their homes.
We just have a few soggy towels.

I spent the afternoon at my spinning wheel.

Tonight I am casting on a new sock.

It's the weekend and we are not going anywhere.
We will be fine.

Thursday, January 07, 2016

Going Steady

Can we talk about the weather for a moment?
Really?  Can we stop now please?
I had an hour-long circular detour yesterday, driving to the nearest town on a drugs run.  It soon became apparent that I was not going to the market town after all, as every road in that direction was resolutely Closed due to flooding.  During my final Diversion I encountered a spring bubbling up in the middle of the road and a group of frantic farmers trying to divert the water using diggers.  I had to drive in entirely the opposite direction, towards the city, to get FL his painkillers.  On the way back, I realised the farm is almost cut off on the city side too.  Time to buy a tractor?!
We are lucky to live far from the river, but the bedroom wall has taken a rain-battering from the east and a small pond is slowly forming on the floor, as it does perhaps once a year in normal conditions. These are not normal conditions!
It will be fine.
I have a bucket and a mop.
No ducks or frogs yet.
But my new wellies and coat have both arrived and are perfect - woo hoo!

The only grey cloud that is welcome around here!
FL is going steady.  We have settled into a pattern of getting up late, having breakfast together, and then him sleeping until dinner, when he will maybe eat a mouthful or two, take his pills, and go back to sleep again.  The tricky bit is waking him out of that sleep to go to bed a couple of hours later.  He complains I try to do it too quickly, but even so it takes me an hour or so of gentle coaxing before desperation makes me frogmarch him to bed, via the toilet.
There is an enchanted time around 4.30 every morning, when the morphine is wearing off just enough and he accepts a gentle hug without the usual fear of pain.  He breathes more easily, we exchange a few words and then fall asleep holding hands.
This is what I must remember of this time.

I have been granted compassionate leave for the remains of this week, on the understanding that I will update The Boss with the result of the various visitations planned for tomorrow:  the Community Alarm people, the local MacMillan Nurse, and the District Nurse are all due to visit.  But I can't help thinking none of these will provide an immediate solution that allows me to go to the office on Monday.  We have yet to hear from the hospice.  Hopefully tomorrow.  I think they will be key.  I cannot imagine trying to tend to FL's physical care in this cold wet draughty house when his condition deteriorates.  I will make sure everyone understands that.  FL himself is reaching that conclusion, which is half the battle.

Meantime, your wonderful words of support and advice have been pouring in.  I have replied to some of you individually, but that is not to downplay the contributions of each and every one of you:  THANK YOU!

Today I cast on my pink Noriboo handspun to make a Qwist hat.

3mm needles: the fishing net of ugly
Attempt One demonstrated the importance of gauge:  my yarn is clearly nearer to laceweight than fingering and looked awful on 3mm needles.

Using 2.5mm needles
Attempt Two, on 2.5mm needles, is much more successful.

The Norwegian wool / bamboo blend is quite coarse to the touch, but seems to be softening as I work with it.  I think it will be fine as a hat, over my hair, but would be too scratchy for neckwear.
Note to self:  don't get your hair cut this year!

This is my third Qwist Hat.  The first was knit out of Crown Mountain Farms Sock Hop and was a present for my dear friend in Glasgow, Christine.
I sent her an optional grey fluffy pompom, which she sewed on herself.
Hello Christine!
The second was for The Girl, in black Malabrigo Finito, with a violently orange pompom.

Hello Girl!
Mine will have a wild magenta pompom :)

They are ready-made, by Rico yarns, if you fancy a few yourself!

I have also been spinning some Popsicle Fuzzlings from Fondant Fibre (top picture).
I plan to use this much softer yarn together with the leftover Noriboo to make a shawl.

Oh - and thank you for all those amazing reading recommendations!  I have joined an orderly queue at the library for most of them.  Hopefully the roads will have been drained by the time it's my turn!

Tuesday, January 05, 2016

The Prognosis

a picture from our last holiday in Ullapool

An entirely unapologetic life-and-death related post.

The fire is lit, the man is asleep.

I have just written to The Boss to request information on my entitlement to paid time off, offering to go into work to discuss it if required.
I told her that it had been made very clear to me today that I should not leave FL home alone for extended periods as he is terminally ill and increasingly unwell.  I am waiting for support from the local hospice, on a day patient basis, to discuss pain relief, as he has refused to consider admission there.
And that pretty much sums up what happened today.

We were at the hospital at 10.30, having overslept  til 8am, after a pain-filled night.  I then had the dog to walk before we set off.  There were several floods to drive through on the way.
When we arrived (walking very very slowly from the front door) I told the receptionist he might need another blood test, as it had not been done since Thursday.  And then we waited.

At 11.45, a nurse appeared and woke him up - she was from "upstairs" where they had been waiting all morning to give him a blood transfusion, but they couldn't go ahead without another blood test today and it was now too late for that to be done.  I knew nothing about "upstairs" as we had been told to come to the clinic as usual.  The nurse went off to find out what to do next.

At noon, the Consultant came to fetch him and we each had to take an arm to help FL along the corridor at a snail's pace.

She asked how he had been since leaving hospital and I told her the highlights.  She tried to engage him, but even once his hearing aid was in, he was struggling to keep up with the conversation.  I explained that he was asleep for about 22 out of every 24 hours and that I had even tried withholding top-up painkillers in an attempt to keep him awake long enough to take his pills and eat breakfast - he hasn't eaten a proper meal for days.  He can't bend his feet to get his trousers off and on.  He can no longer stand upright.  He can only walk with the support of my arm / the wall. 

The Consultant explained that she has stopped monitoring his myeloma because it is no longer relevant.  The only thing they can really offer is pain relief, and when the myeloma begins to upset his kidneys it will have to be something other than morphine.  He may find blood transfusions helpful in future, but his haemoglobin is at an acceptable level without one this week. (Phew!)

She said to him that she needed to discuss with us whether home is the right place for him now... 

He heard that alright and was very abrupt with her.  He said he didn't want to go to the hospice. She asked why not.  He said it was somewhere that people went and didn't come out again.  She smiled and said that this was not the function of the place:  it was somewhere that people who are already terminally ill go to be cared for in an appropriate way, where people understand their needs and are professional palliative carers.  "So are you telling me that I am in that state?"
Um.... yes.
He was visibly shocked. 
I thought he understood.  I really did.

She asked me what my situation is as regards work and I explained that I was due to talk to The Boss tomorrow.  She proposed getting the MacMillan nurse to investigate outpatient support from the hospice, and to involve the GP.  I explained that the GP had not followed through with his promise of support once FL came home from hospital and had not returned phone calls.  The holiday period was obviously a factor in this, but nevertheless...

I also told her that Social Services has offered an alarm pendant and "possibly" help with a wash once a week. She was surprised that this was all that had been suggested.  She asked if we had been offered a wheelchair so he could get out and about?  No.  

FL bristled at the idea of a wheelchair and said he was disappointed that nobody had suggested a physiotherapist to help him get his strength back.
There was a pause.
The Consultant very kindly explained that his muscles are wasting due to the cancer, that this is not reversible and there is nothing to be gained by tiring himself further.

It was clear that FL was upset by the conversation, so we took him back to the waiting room and then went to find the MacMillan nurse.  The nurse has undertaken to speed up a hospice outpatient appointment on the back of a referral from the Consultant (to be made today), liaise with the GP, and investigate whether the local hospital could offer anything along the same lines as the hospice, if only to let me get to work / some respite for a few hours a week.  We agreed I would report back once I had been able to talk to The Boss.

So there we have it.

We go back to see the Consultant next Tuesday, by which time she hopes that we will have a proper support network in place, with the help of MacMillan.

You are going to ask me how I am feeling?

A bit tearful, but in some ways relieved that it has been properly spelled out that this is IT.  Nobody can tell us how long it will take, but he is dying.  Deep breath.

How is FL feeling?

He has been asleep since we got home.  And that is the problem at the heart of the situation right now.  He is not really "present" any longer.  If I was his daughter and not his wife, perhaps I could cheerily deliver him to the nearest care facility, whether he wanted it or not, and carry on with my life.  But it's not like that.  He is still my First Love.  We have history. He is The One.  So I have to knuckle down and do the best I can for him in his final days / weeks / months.  And he is still a proud man - he is having no truck with wheelchairs or walking sticks or elevated plastic toilet seats or being helped to wash.  He would just rather not.  Which is only fine up to a point.  Sometimes I have to just make the decision and follow it through, for both of our sakes.

This is a blog post that I believe needs to be written because there are other carers out there with as little idea as me of what it is actually means to care for their dying husband.  Nobody tells you.  The only information on "end stage myeloma" I can find from UK-based health websites just tries to tell me that everything will be alright:  there are support networks and people who care and they will take over and you will not have to worry. 
Um no... not exactly.

Let me tell you now:  it is pretty much like having a new born baby but in reverse:  no sleep unless the child sleeps, feeding, toileting, washing, and never leaving the infant unattended.   And however much you love that child, it is hard work and it is exhausting.  And unlike having a baby, which grows up and becomes more able to do things for itself, the more time goes on the less your husband will be able to do for himself.  Your life will be consumed by caring for the other person, with no possibility of a positive outcome.

The only possible end to this situation is The End.

And that is why I write this down.  And why I indulge myself in crafty pursuits.  And why I make lists of books I want to read and why I buy myself a new raincoat and wellies. 

I am shoring myself up against the incoming storm that WILL wipe away the life we have built together.

And if you don't want to read about that, please just stay away from this little space of mine. 
It's for the best. 
Thank you.