NHS: Envy of the World Part 2

NHS: Envy of the World Part 2 – where to begin.

In May 2016 Linda got a sore throat.  So she did what anyone would do.  Paracetamol and hot lemon.  But it didn’t shift so she went to her GP.

He had a look in her mouth, said it was an infection and gave her antibiotics.  Fast forward nearly 5 months and 3 courses of antibiotics and it’s only got worse.  To a point where she can hardly eat or drink.

So he finally sends her for an X-ray.  Five months after she first saw him.  Guess what?  Yes, she had cancer.  Now it wasn’t the main tumour that was causing the problem with the throat.  It was the secondary cancer that was in the lymph nodes at the base of the throat.

Now we knew it was bad the day of the X-ray.  They don’t ask you back in and ask you to lift your arm so they can take another one from the side if it’s good news.  Two weeks later the surgery phones to say the result is in.  Two weeks.  And, yes, it was cancer.  It’s now nearly six months on from the initial pain.  You’d think they’d get a shift on.  Well, I suppose in NHS terms waiting 3 months to start treatment counts as fast.  So that’s nine months on from first going to the GP.

The first chemo stuffed her kidneys and nearly killed her.  She was in the Western General in a ward of four.  Now despite the fact she was only managing to eat a couple of spoonfuls of porridge Linda and the other 3 women in her ward ended up with simultaneous diarrhoea.  The nurses and doctors tried to claim it was food poisoning.  You know, despite the fact that Linda wasn’t eating.  The best part was they were all sharing one toilet.  And were asked to have a shite in a papier mache bowl so it could be sent for tests.  Six hours after four women started shitting in a cubicle the bowls of shite were still lying there.  Despite numerous nurses being told.  And they wonder why people get infections in hospital.

After we found out about the brain cancer Linda was back in the Western General.  Now remember, because this is important.  It was an oncology inpatient ward.  So just people with cancer and highly trained teams of medical personnel.  The inflammation on the brain is at its worst.  Linda doesn’t know where she is or what is happening.  She has no short term memory.  I go in for visiting and ask if she’s had any of her food replacement drinks.  She doesn’t know so I ask a nurse.
Nurse: “What food replacement drinks?”
Me: “The ones I brought in from home because I knew you wouldn’t have them.  The ones with labels on them with Lindas name on them.  In your fridge.  The one 4 feet behind you.  The ones she’s meant to get three or four times a day”.
Nurse: “Well she should have asked for them.
Me: “The woman with brain cancer?  The one who doesn’t know what’s going on”.

This happened every day she was in.  And the next time she was admitted.  As well as;

Me to Linda: “Are you in any pain?  Have you had your morphine?”
Linda: “Yes, my head really hurts.  I don’t remember getting any drugs”.

Back to the nurses station.

Me: “Linda hasn’t had any morphine and says she’s in pain.”
Nurse: “She can have morphine any time she likes.  She just has to ring the buzzer.”
Me: “This would be Linda with brain cancer who doesn’t know what a buzzer is or how to work it.”

This happened every day she was in.  And the next time she was admitted.  In an oncology ward.  I could go on about how utterly useless the entire shower of shites are but the screen is blurry through the tears.

Here’s a few of the many lines from NHS Lothians mission statement;

  • We will provide a safe and caring setting for patients and staff, and an efficient, effective and seamless care experience
    We will demonstrate our compassion and caring through our action and words
    We will take time to ensure each person feels listened to, secure, understood and is treated compassionately.

The utter bastards. They couldn’t have treated my Lindy any worse.  She’ll have no more birthdays.

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NHS: Envy of the World Part 1

NHS: Envy of the World – maybe once upon a time.  Because I can’t emphasise strongly enough how much I hate the NHS.  Actually, that’s not true.  It’s the people who work for the NHS I hate.

But they’re heroes I hear you cry.  It must be true.  Every current affairs programme tells you so.  You can’t walk down the street without a T shirt proclaiming it.  Well they’re not.  I’d use the C word to describe them but Mrs H wouldn’t like it.

Yes, Linda.  They’ve couldn’t have treated her any worse.  And it started out so well.  About 10 years ago she needed knee surgery.  It couldn’t have went any better.  The surgeon came round beforehand, reassured her and told her she’d be skipping in a week.  Which she was.

Now she knew the other knee would need surgery as well so fast forward three years and she’s actually waiting for an orthopedic appointment when her knee gave way at work.  I rushed her into hospital where after the obligatory six hour wait she was told she would need emergency surgery and that they would phone us with a date.

They’d used the word emergency so I anticipated it being soon.  But they sent us back to our top floor tenement which involved me carrying Linda up 66 steps and waited.  The “emergency” involved waiting a week, spending hours on the phone asking how I was supposed to get her there.  Apparently, the NHS doesn’t have a system for emergencies as you had to book patient transport 28 days in advance so I carried her down 66 steps and took her in a taxi.  Quite how a wee pensioner would have managed I don’t know.

This time an anaesthetist came to see us because “the surgeon doesn’t like to see his patients outside the theatre”.  Nice.  Turns out the surgeon from three years before had retired.  And off she went.  I was told to come back and collect Linda in three hours.  Except when I returned she wasn’t there.  And no-one knew where she was.  They’d lost her.  They also didn’t seem overly concerned so I started wandering about from ward to ward.  It’s now 6pm and I’d been looking for two hours when I bumped into the anaesthetist on his way home.  He recognised me, asked what I was doing and when I told him he said he’d seen Linda lying in a ward and took me there.

No-one had been to see her since the surgery, they’d lost her personal belongings including her crutches but the anaesthetist found a doctor to arrange her discharge.  We were just glad to be going home.  However, no-one mentioned that there had been a “complication”.  I suspect because the surgeon fucked up.  Because instead of the simple operation we’d expected, they had made two repairs instead of one.  Something they ought to have mentioned and arranged after care.  But they didn’t.

Leap forward a week and Linda is in agony.  She can’t walk, she’s weeping with the pain and best of all we’re moving house.  I had to carry down the stairs again and take her in a taxi to what is supposed to be a bright new start.  Two days later I had to call 999 and she ended up back in the hospital.  Where they finally explained what had happened and how she should have been getting daily physio for the previous ten days.  Bastards.

When Linda gets home she tries so hard.  She has to get a taxi to the physio every morning because, yes, there;s no patient transport.  She works so hard at the physio because she wants to get better.  But she isn’t.  She tells the physio about how painful her ankle is, something that is causing more pain than the knee.  The physio tells her it’s referred pain and that she should walk it off.  She tries until she cries.

She has a monthly appointment with the surgical team and every time they say it’s referred pain.  They say it’s CRPS which is medical speak for you’re a nutter and it’s all in your head.  They send her to the pain clinic where a failed doctor wants to give her mind altering drugs.  She’s send to rheumatology and when she walks in the room the doctor says “I can tell what’s wrong with you just by looking”.  Hypermobility, apparently, because he reckoned her arms were too long.  He was wrong.

We enquired about going private but it turns out in this part of the world it’s the same people who work for NHS Lothian that work for the private hospitals.

Finally, we’re at the last appointment with the surgical team.  It’s been 10 months since the botched surgery.  Linda is in agony.  She’s crying in front of a young registrar because she knows this is where they give up on her.  He doesn’t know what to do.  In the end he says he will refer Linda for an MRI just to show her that there is nothing wrong.

The MRI showed there was no cartilage left in the ankle and that the bone was rubbing against bone.  So everything she’d been told to do was wrong.  Of course, it was also too late to do anything about it.  She was just going to have to live with the pain.

Which is fine but the pain made her withdraw from the world.  She became scared to go out without me in case she had an accident.  My beautiful girl was broken.  And none of them cared.  But when she became ill last year we hoped for the best.  We were wrong. But that’s for an other day.

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So that was that then

 

 

Or it should be.  According to Mrs H it would take a fortnight for me to get over her.  Well the two weeks were up yesterday and quite possibly, for the first time since she said yes to marrying me, Linda made a mistake.

Because every day is worse than the one before.  I know she thought she was doing a good thing when she made me promise not to join her but I regret that promise every minute of the day.

A couple of people have asked about the music Linda chose for her funeral so here we go.  About a week after she went into the hospice they’d managed to get the inflammation of the brain under control.  She was feeling so much better and she asked me to put the radio on for her.  The television just annoyed her but she got some pleasure from music over the last few weeks of her life.

Anyway the first song came on and it was straight into;

“I’ll sing it one last time for you
Then we really have to go
You’ve been the only thing that’s right
In all I’ve done.”

She was in tears instantly.  And she said “that’s what I want playing when I arrive in the chapel”.  And it did.  Then she started talking about a song to play as I left.  It was actually my idea but she lit up at the thought.  See, I’m not a smiler.  Never have been.  It’s quite rare for those muscles to get any use.  But Linda  said the only time I was guaranteed to smile was when she walked in the room.   Apparently, in twenty five years I never once failed to smile when I saw her.  So that was song number two.

“Make me happy through the years never bring me any tears
Let your arms be as warm as the sun from up above.”

And here they are;

Leona Lewis – Run

 

Willie Nelson – Bring Me Sunshine

 

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For Linda

I have seen the mornin’ burnin’ golden on the mountain in the skies
Achin’ with the feelin’ of the freedom of an eagle when she flies
Turnin’ on the world the way she smiled upon my soul as I lay dyin’
Healin’ as the colors in the sunshine and the shadows of her eyes

Wakin’ in the mornin’ to the feelin’ of her fingers on my skin
Wipin’ out the traces of the people and the places that I’ve been
Teachin’ me that yesterday was somethin’ that I’d never thought of trying’
Talkin’ of tomorrow and the money love and time we had to spend
Lovin’ her was easier than anything I’ll ever do again

Comin’ close together with a feelin’ that I’ve never known before in my time
She ain’t ashamed to be a woman or afraid to be a friend
I don’t know the answer to the easy way she opened every door in my mind
But dreamin’ was as easy as believin’ it was never gonna end
And lovin’ her was easier than anything I’ll ever do again

It gets worse

It’s the funeral tomorrow.  I’ve no idea how I’m going to get through that.  Because the second week is a whole lot worse than the first one.

The first week you’re in shock.  And you’ve to got to deal with a whole load of arseholes, most of whom seem to be in the wrong job and go out of their way to make things difficult for you.

But the second week is when it really starts to sink in.  In between howling I’m raging mad.  We had plans, damn it.  They weren’t big plans.  We’d never asked for much.  We wanted each other.

I’d taken my redundancy, we were going to move house, buy a puppy and potter around arm in arm for another twenty years or so, enjoying some peace and quiet.  It wasn’t a lot to hope for.  But now, wandering around an empty house, Linda’s house, it’s all gone.

Unfortunately for me, Linda knew me too well.  So when she was still lucid she made me make some promises to her, knowing full well they’re the only promises I’ve ever kept.  I’m not to do anything stupid.  Which was her polite way of saying don’t top yourself because she knew that would be my first inclination.  Which it is.

I’ve not to start drinking again because that would lead inexorably to breaking the first promise.  I’ve not to be mean to her mother.  Which is easy because I’ll never speak to her again.  You know the witch who when an 11 year old Linda ran into the house, in tears, because their downstairs neighbour had grabbed her and felt her up slapped her in the face and told her not to be a dirty girl.

And, somehow, I’ve to be good to myself.  That won’t happen.  She knew fine well the only reason I got up in the morning was to try and look after her.  Something I failed at time after time.  The last thing she said to me as she faded into unconsciousness was “you always made me feel safe”.  But in the end I couldn’t.  I’m sorry Linda.

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St Columba’s Hospice Tribute Fund for Linda Hamilton

http://linda.hamilton.muchloved.com/

Uncle Tommy

So I went to see Uncle Tommy a couple of days ago.  He’ll be 91 this weekend and went into a care home at the end of May.  In fact he went in 4 days before we found out Linda was going to die.  I went to see him on the Thursday of the week he moved in.  Linda went into the Western General the following day and on the Saturday they told us she was going to die.

Uncle Tommy was her favourite.  I remember she told me when she was young she wanted Tommy to be her Dad.  His brother, her step-father was a drunken, bad tempered bastard.  But Tommy was always full of life, drink free and took time to spend with Linda.  So when his wife died a few years back it was Linda who stepped in to look out for him.  She took him to the doctors, hospital appointments, sent me to his house with food parcels and had him to our house as often as she could.  This was despite the fact he wasn’t actually a relative and his own nephews and nieces never went near him.

She only left the hospice twice – once to come home because she couldn’t remember what our house was like – and once to see Tommy in the care home.  Which she thought was great and helped put her mind at ease.  I organised a couple of escorted visits for Tommy to come and see Linda and his last visit was two days before Linda fell into a coma.

When she died I phoned the care home to let them know and asked them to break it to him gently.  I couldn’t face him that week as I was too much of a mess.  I still am but I knew I had to visit, for Linda’s sake.  So I chapped on the door and went in.  I was surprised when he just smiled and asked how I was.  Then I noticed he was looking behind me, down the corridor, and I realised he didn’t know.

So I had to tell him that Linda was dead.  God, he wept.  Nearly as much as me.  She was his favourite as well.  His pal.  She looked after him.  She loved him and he loved her.  He knows I’ll still visit but with her gone I think a wee part of him is gone as well.  Strangely, it was quite nice to be with someone who loved her as I haven’t spoken or seen anyone else since she died.  And I don’t know anyone who knew her anymore, apart from her family.  And they don’t count.

After the NHS fucked up the first time and she ended up partially disabled she really withdrew from the world.  She was in constant pain thanks to the botched knee operation and the misdiagnosed ankle problem and I was content just to be with her. After all, I didn’t have anyone to withdraw from. And as  long as we had each other, nothing else mattered.  So for the last six years it’s just been the two of us.

Here she is on Tommy’s last birthday.  My beautiful Lindy.

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MEMORIAL FUND FOR LINDA – ST. COLUMBA’S HOSPICE

One week on

It was a week ago today that Linda died.  You’d think this would have been the worst week of my life.  Well you’d be wrong.  It’s in the top three.  The worst week was the week we found out she was dying.

That was bad enough but the stupid bastard doctor at the Western General decided to tell us the day she was diagnosed.  When the inflammation on her brain was at its worst. When she had no short term memory and no idea where she was or what was happening.  So she forgot.  Then I had to tell her. By myself.  Again and again until the medication reduced the inflammation enough so she remembered.

Then there was the last two weeks before she fell asleep.  They’d done all they could with the medication but the cancer and inflammation had spread too far.  The horrors that poor girl went through.  The paranoia, the delusions, the terrible hallucinations.  God, she suffered. And it was all my fault. I’d put her in this bad place where the doctors and nurses were experimenting on her.  She hated me.  I knew it was the cancer talking but if you’re one of the people opposed to euthanasia then spend a couple of weeks, 24 hours a day in the company of someone in the final stages of brain cancer and tell me how it wouldn’t have been a blessed relief for Linda.

The featured picture was her favourite picture of herself.  Mainly because the sun was behind her and it stopped people seeing how ugly she was.  And she believed that.  Not in a fake affirmation, tell me I’m pretty way.  She genuinely believed it.  Something else to thank her witch of a mother for.  She broke Linda.  I spent 25 years trying to put the pieces back together but I failed.  I actually made the chaplain at the hospice cry when I told her one story from Lindas childhood.

Her parents got divorced when Linda was 2.  Now this was a long time ago but I think it shows her mother for who she was when I tell you that her father got custody of her two older brothers.  Now this did not happen back then.  Bear in mind he was living in a single end with his mother, father and brother.  But the court probably thought a wee girl should be with her mother.  How wrong.

The first thing her mother did was give her to her granny.  Now Linda loved her granny but she was in a two bed-roomed council house with her bedridden husband and two grown up sons who were a wee bit thon way.  No quite right.  Davie managed to hold down a menial job but Wullie wasn’t fit to work.  So her granny had her hands full.  But she kept Linda until she was four and had started primary school before insisting that her mother look after her.

Now this is Lindas earliest memory.  She didn’t know her mother that well but was all excited when she found out she was coming to see her.  And then she turned up with new clothes!  Linda had never had new clothes.  And then there was a hurl on the bus!  It was all too exciting.  They ended up in Morningside, a foreign country.  They went to a big house, bigger even than Lochend House.  And her mother left her there without a backward glance.  The Barnardos childrens home in Canaan Lane.

And her mother told no-one.  She was living a few miles away so her granny never thought too much about it when she didn’t see Linda.  A few months later her grown up cousin Billy was working on the roads in Morningside.  He was walking past the primary school and who was standing there all alone but Linda.  He asked her what had happened and she did her best to tell him.  The next day her granny came and took her home.

My Lindy. You suffered your whole life.

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A day to forget

It was a dark and stormy morning.  As it should be as today was the day I had to register the death of my Lindy and arrange her funeral.

IMG_20170811_104713_1It was no surprise then when the registrars office turned out to be an utter shithole.  Well it is run by the City of Edinburgh Council. So no surprises there.  With the usual warmth and courtesy of a council official the assistant registrar never even bothered to introduce himself or even express condolences.

The last time I was there was over 25 years ago when Mrs H and I went to register our marriage.  And I don’t think it had been cleaned or tidied since.  It certainly looked as though someone had crapped the eighties all over it.  Bearing in mind there are only two reasons to go there – happy ones (birth/wedding) and sad ones (death).  The least they could do is spring a minimum wage for someone with a black bag and a hoover.

IMG_20170811_104653On the plus side I was in such a foul mood that I actually went into a caff for an all day breakfast – the first meal I’d eaten in 3 months.  It was alright even if it’s the first all day breakfast I’ve failed to finish.  But that’s one less thing for Linda to moan at me from on high.

Then it was off to the store to arrange the funeral.  Old habits, see.  My family always went to the store for a funeral because that way you got the divi added on.  And it was a nice wee bonus come divi day if you’d had a good few deaths that year.* (*the preceding paragraph will only make sense to Scotch folk of a certain age).

At least the woman there was matter of fact and professional, something the council staff might want to consider sometime soon.  The funeral was sorted within 20 minutes as Linda had given me quite specific instructions when she was still able to.  Private, cremation, a light wood coffin, bright yellow flowers (but not sunflowers as she hates them). She just wants me there as she arrives to ‘Run’ by Leona Lewis, then a few minutes contemplation before she departs to ‘Bring Me Sunshine’ by Willie Nelson, two songs I’ll never be able to listen to again after the day.

Here she is a girl of 16 and as a young woman.  She hated the thought of her picture being on the internet but her was a rare beauty.

Donations to St. Columba’s Hospice in her name can be made here.

My Lindy

My dearest Lindy is gone.  I’ve never felt so bereft and desolate.  For over 25 years it was always Linda and Stuart. There was no Linda. No Stuart. We were one of those annoying couples who were inseparable.  And now she’s gone.

I don’t know what she ever saw in me.  She was beautiful, funny, full of life and mischief. I was and and am a dour, cantankerous drunk.  But the second last thing she said to me before the brain cancer put her to sleep was “You always looked after me, no-one else ever did that”. And she meant no-one.  Because underneath the smile she was lonely and after we became a couple she told me how she would cry herself to sleep at night. That broke my heart.

Until she fell ill last Christmas I don’t think we’d spent a night apart in over a decade bar some hospital visits and once she ended up in St Columba’s Hospice I spent every night with her there until she passed. I was with her when she took her last breath and she was still the beautiful girl I met all those years ago.

She had a pretty shitty life. As she would say “there’s always a fly in the ointment”. Whether that was an evil mother ruining her childhood, a teenage wedding to an utter bastard, caring for elderly relatives with dementia and COPD or after the hospital fucked up her knee and misdiagnosed a damaged ankle so that she was never pain free for the last six years of her life.

We made grand plans last year. I took my redundancy and we were going to move out of town and get a dog as we wound down into later life. Even when she was diagnosed with cancer and underwent 10 lots of chemotherapy and 30 lots of radiotherapy, some of which hospitalised her again, we still hoped.

Then the final kick in the teeth.  Just a couple of weeks before the follow up scans were due to see if the treatment was successful we found out the cancer had spread to the brain. And there was nothing they could do. Her last few weeks were horrible as the paranoia and confusion had her in tears and if euthanasia needed any more justification spend some time with a brain cancer patient in their last few weeks. Sometimes she would forget she was dying and then the reality would sink in. It was only a fortnight ago that she looked and me and said “I’m never going to have a puppy now, am I”. And we wept.

There were a couple of good weeks in the hospice and the staff and volunteers there managed to put a smile on her face. But after weeks of torture she fell asleep and passed away five days later.  If you feel like it you can give some money to the St Columba’s Hospice charity here.

This was always her favourite picture of the two of us. It was taken a couple of months before we started winching and she always said that she knew back then that I was the one for her. She was my Lindy, my dearest and I don’t know how to survive without her. But she knew how much I love her. Aw the way to Morrisons. And back.

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