Sunday Selections #829

 

Sunday Selections was originally brought to us by Kim, of Frogpondsrock, as an ongoing meme where participants could post previously unused photos languishing in their files. Huge thanks to Cie who gave me this wonderful Sunday Selections image. 

The meme was then continued by River at Drifting through life.  Sadly she has now stepped aside (though she will join us some weeks), and I have accepted the mantle.  

 

The rules are so simple as to be almost non-existent.  Post some photos under the title Sunday Selections and link back to me. Sorry I still haven't succeeded in working out how to do a blog hop. Clicking on any of the photos will make them embiggen.

 

 I usually run with a theme. I am still home though have had to make repeated visits to the hospital.  Yay.

I saw the chemotherapist at the end of last week.

I have a rare and aggressive cancer.  Stage 4.  It has spread to my abdominal wall.  At this stage chemotherapy is due to start the week after next.  I have a meeting with the radiation team and rather a lot of other medical tests/procedures next week.

 

While at home I have been enjoying the birds and the garden.  More is coming out each day though so far (despite the need) I have done no work in it.

 

Come revel in colour with me.

At the hospital.

 

 

 In the garden.

 

 

The perennial begonia is still flowering.

 I hope you find colour and joy in your week.

He is home...

Thank you so much for all your supportive comments and emails.  They have meant a lot.

On Wednesday I went to visit.  He was on oxygen, a drip, and had a catheter and a drainage tube installed.  They had just promoted him from ice and water, to clear fluids.  And told me that they intended to send him home the next day.  The drainage tube could be removed some time next week.

Lemon-lipped doesn't begin to describe how that made me feel.  Ballistic with anger/disbelieving/teary/overwhelmed.  All of the above.

I considered simply refusing to come in and pick him up.  With no money, no clothes and no keys it would have been interesting to see the hospital's solution.

Somehow the idea that it might be a touch premature percolated into their grey matter.  So they kept him for Thursday, subject to review on Friday.

This morning, they were balanced on the fence.
 ' Maybe he can go home, maybe we will keep him for another day'.  'We will take out the drainage tube and see...'

When I went in at the start of visiting hours, the drainage tube was still in place (draining freely and copiously).  He was still on oxygen and he still had a cannula in his arm.  He had been told his diet was unrestricted.  Progress of a sort.

It took three staff to remove the drainage tube.  When they let me back into the cubicle they were telling him that he would need to keep a careful watch to ensure that it didn't become infected, back up with fluid behind the incision, ooze pus, become painful (more painful?), become red and swollen...
'If it does any of those things you can see your general practitioner.'
 'There is a three day wait to get in to see her.'
'Oh, perhaps in that case you could ring the hospital...'

Which we most definitely will.

Over the next hour they took him off oxygen and put him back on it.  They made him walk and cough.  They removed the cannula.  They took him off oxygen again.  And announced he was free to go and that they had someone coming into his bed shortly.
 'And if you wait downstairs, we have prescribed medication to go home on.  The wait might be several hours...'

He was already an attractive grey colour, so I negotiated for the ability to pick up the medication for him later in the day and got him home.

When I rang a couple of hours later to check they assured me the medication was ready, so I went back in.  They lied.  It was nearly ready.

There are still quite a number of unresolved questions.  He has an appointment in the surgeon's rooms in four weeks time.  At that appointment we will not be fobbed off with flunkies, or given a scanty 75 seconds of the important man's time.  I will get answers, and I will indicate deficiencies in the treatment he/we received.  And, if necessary I will go further.  And further.  Which will make the skinny one cringe.  Tough.

On a much nicer note, over the next few days I hope to be able to visit your blogs again.  Thank you again for your support and your patience.  It has meant a lot.

  

Another hospital update.

This morning a little after six I finally managed to speak to the nursing staff.  And I only got disconnected once.  She told me that his high and skinniness 'had a really good nights sleep, was very comfortable and in no pain.'  I listened, I hoped, but experience has made a disbeliever of me.

I told one of my brothers and a friend this morning, both of the nurse's statement and of my distrust.  Both of them told me I was being negative, cynical and not helping anyone.

When the ward was open for business I went to visit.  Sadly I was right.  He looks dreadful this morning and admits to feeling less than perfect.  He says he got very little sleep, is in considerable pain - and nauseous.

Then he went on to give me further less than wonderful news.  Shortly before they started the surgery they discovered the problem was considerably more extensive than they had thought.  A much longer and more complicated operation ensued.  And, worse still, the surgeon visited him this morning and told him that there will be more operations in his future.  Operations plural.

He has now had seven abdominal surgeries - which is more than enough.  Except that it won't be enough.

I didn't stay long this morning - and left hoping he would get some sleep.  I will go back this afternoon.

I am well aware that things could be a great deal worse.  Just the same, I am feeling sad for him.  And tired to the bone.

Thank you so much for all your messages of support.  They have meant a lot - to me and to him.

A long day

The skinny one and I fronted the hospital (early) for his 9am appointment yesterday.

The admissions nurse was one of our neighbours - which shocked both of us.

He was given the stunning attire to change into, complete with hat and booties.  And did.

And we waited.

Ten am:  Still waiting.
Eleven am:  Ditto
12 noon:  You guessed it.

People in the waiting room came in, people in the waiting room moved out.  We waited some more.

1 pm:  Still waiting.
2 pm:  'Second verse, same as the first...'
2.30 pm:  He was finally moved to a trolley, destination the theatre.  We were told that it would be 6pm before he was in a ward and I could talk to anyone.

So I came home.  Fed the cats.  Dealt with their kitty litter.  Put out the garbage and the recycling.  Dried his dressing-gown which I had washed before we left for the hospital.  Waited.

6 pm:  I rang the hospital to be told that he had only entered recovery less than half an hour earlier.  He wouldn't go to a ward until 7.30 or so.  'There are no phones in recovery so I can't put you through or talk to them and relay how he is on to you' (liar, liar pants on fire...)

I rang at 8pm.  'No, he hasn't reached a ward yet... Ring in half an hour or so'

So I did.  He has just got to the ward (hooray) but we are too busy to talk to you.  Ring back later.

So I gave up and went to bed myself.  Trusting, hoping that they would ring me if anything went pear-shaped.

He has had the surgery.  He is alive.  Both good things.

And today is a whole new day.

Happy Dances

His high and skinniness was asleep when the phone rang a few minutes ago.

It was the hospital on the line.  Do I think that he could/would possibly agree to surgery next Monday?  'We are sorry for the short notice...'

YES.

And now I have woken him up.  Which gave me pleasure on lots of levels.  The pavers are not here though...

Pre-Admission clinic tomorrow afternoon.  'Are we familiar with the process?  Do we know where to find them?'  Given that this will be his seventh abdominal surgery I hope so.  I really hope so.

Moving Forward

Little, by little.

The surgeon is pleased with himself (when are they not) and believes the operation was a complete success.  Good - but they said that this time last year too.

Today they closed the incision.  Yay.  The smaller portion had taken photos which were forwarded yesterday to his nephews who described it as 'an epic wound' 'fully sick' and 'totally awesome'.  Wuss that I am, I didn't enjoy looking at it.

He is still limited to sips of clear fluids, with food unlikely to be introduced before early next week.  The proof of the pudding will be in the digesting, so please join with me in crossing appendages in the hopes that when he is promoted to food again it moves through (and out of) his body as it should.

Wine o'clock continues to be one of the highlights of the day.

He is home.

Drat it.

Many years ago I went (once) to see an arrogant toad with an M.D after his name.  He asked 'what seems to be the problem'.  'I have a throat infection' I replied.  Toad's response 'And when did you complete your medical training'.  There are no prizes for guessing what was wrong with me.

I still haven't completed (or started) medical training.  However, I do know the smaller portion well and, over the years have experienced far too many medical dramas with him. 

He has been discharged too early (with horrendous consequences) before.  Yesterday was the first day since his operation when he had been allowed a 'normal' diet.  At lunchtime the first such meal arrived - just as he was whisked off to have an ultrasound.  When he returned his lunch was gone.  He was also still receiving, and dependent on oxygen.  We took him to the cafeteria for a cup of coffee and he was an attractive grey shade and gasping when we returned him to the ward half an hour later.  Hospital staff had flagged his imminent discharge and he said 'I really don't think I am ready'.  Coming from his lips this is a HUGE admission.

This morning at 7.30 he rang me to say that his doctor was very pleased, and that he was being sent home today.  WTF?  And sent home he was.

A community nurse will come and change his dressing on Friday, and on Monday another will remove the multiplicity of staples currently holding him together.

'Make an appointment to see your surgeon in four to six weeks time'.  'You may drive when you can complete normal (but unspecified) chores in say, two weeks time'.

Waiting for the discharge papers to be completed and to collect his medication exhausted him.  He couldn't face anything to eat (and food has a number of issues for him) and fell into bed when we got home three hours ago.  He is still out like a light.

I so hope that this isn't another premature discharge.  Hope it, but am not convinced.  Cross your fingers and toes that his vile convalescence is the worst I have to deal with in the coming days and weeks.

PS:  In their efficiency the hospital has just rung me to ask 'when he left the discharge lounge, and whether he had his medication?'  Superlative record keeping.  Not.

A set back

I should know better than to get complacent.  I do know better.

In the small hours of this morning the hospital decided that the skinny one was dehydrated (whose fault was that?) and that his blood pressure was too low and dropping.  So they decided to do a blood transfusion.

To which he had a very bad reaction.  His temperature shot to 38.9, and he started drifting in and out of consciousness.  The resultant kerfuffle woke the whole ward.  About which I care less than nothing.

Needless to say we gained this information from the smaller portion and from reading the notes which the physiotherapist had carelessly left by his bed.  Hiss and bloody spit.

Tomorrow I am on the war path.  Himself is tired today - but he had just finished the longest walk he has taken since the surgery when I saw him.  He is getting his clear fluids, and also some effective pain release.  Both good things, but my feet are still on that path to war.

A Stint with Stents

We went to visit this morning hoping that either the stents had been removed, or that he was off having them removed.

Wrong on both counts.  He had been told (early) that the stents were coming out this morning, but had heard nothing further.  I had some errands to run for him so we left.

And guess what we found when we returned?  Nothing had changed.  He still had the stents.  He had spoken to his nurse about it, and she said she 'knew nothing' but would follow it up and get back to him.  Deathly silence ensued.

So I went to the Nurses Station and spoke to the sister in charge.  Just for a change - she knew nothing and his nurse had just gone off on a break.  She went through his notes and saw that yesterday his stents were marked to come out.  There were no further notifications and nothing had happened.  'I will have to page his doctor.'  'Please do.'  Are you seeing a pattern here?  She promised to get back to me, and I rejoined the smaller portion and his sister.

He has been walking today.  Yay.  His bed is by the window.  Yay.  He feels very, very uncomfortable and cannot sleep.  Quelle surprise.

We waited.  He had been told he could have clear fluids - but had been given nothing but ice.  We topped up his ice supply.

And then a junior doctor from his medical team appeared.  Yay.  And for the first time we got a sensible explanation about why the stents were still in place.  Those of you with delicate stomachs should skip the next paragraph.

The stents are attached to a catheter.  If the stents are removed, so must the catheter and he will be swollen and sore so the catheter could not be re-inserted without causing considerable discomfort.  He is not walking easily or well at the moment, so having the catheter in place is both more comfortable and convenient for him. 

The medical team will review the need for the stents (and catheter) on a day to day basis.  He is improving so rapidly that they think it will be one or two more days at most.  After a little prodding from me (which caused the smaller portion to squirm) he apologised for the poor communication and promised better in the future.  (I will hold them to that.)

I was on a roll then and asked why if the smaller portion had been told he could have clear fluids he had only been given ice.  More apologies and a promise to ensure that it was rectified by dinner.  More squirming from the smaller portion.

The medical team are very, very pleased with his progress after such a major operation.  Yay.  And off he trotted.

And then the nurse re-appeared from her break and told him that she had been unable to find out why the stents were still in place.  How hard had she tried I wondered - but didn't say.  She too promised to ensure that he got a range of clear fluids - soup, jelly, juice.

We went down to the cafeteria and brought him back green tea - which hit the spot.  And we left, happier than I have been.  He is in considerable discomfort, but is improving.  Hopefully he will become more stable on his feet and then the catheter and the stents can be removed.  And, while the smaller portion did not like me prodding the doctor, it achieved results and I feel no guilt.

Thank you all for your support - and a big thank you to those who visited Mistress Snark's parlour.  I had such a good time.

On the silliness front?  Today I saw off one of our neighbour's cats with a pump-action water pistol  The cat views our bird feeder as its personal smorgasbord.  I scored several direct hits and it scarpered home looking like a porcupine.  I smiled broadly. 

Wine o'clock calls...

An update and a diversion

The medical mayhem continues.  One step forward, then do a reverse flip and half pike.

When we went up to see the skinny one this morning he looked dreadful.  An attractive shade of grey, propped up in the chair beside his bed, attached to far too many bells and whistles.  HOWEVER, the surgeon had been and was very, very happy with the operation.  While we won't know for three months whether it has been a success, early signs are positive.  Yay.  About time too.

The surgeon was so happy with the operation that he decided the stents that were installed in the smaller portion's urethra yesterday could be removed.  Today.  Back to theatre, another general anaesthetic.  Joy and bliss.  We asked the smaller portion and the hospital to ring when they had a time for this next procedure.

When we went back this afternoon we had heard nothing.  Neither had he.  He was still (unsurprisingly) in acute discomfort.  He had been taken for a walk, which was apparently very, very unpleasant.  He was a better colour though.

So I trotted up to the nurses station.  'We know nothing'.  'Please find out.  As soon as possible.  And let your patient know (and preferably me too).'   'We will have to page the doctor.'  'Please do'.  And so they did.

Needless to say the doctor hadn't responded by the time I left.  The smaller portion promised to nag about it every chance he gets.  I would assume that the stents are there until tomorrow.  Hiss and spit.

The smaller portion rang a little while ago - very down.  The stents will be removed tomorrow morning.  More hisses, and more spits.

*********

And now for the pleasant part of my day.  My silly side is strongly developed.  When Mistress Snark invited me to afternoon tea in her parlour, I was very pleased to accept.  There is  a teaser below - and I would be very happy if you would join me for afternoon tea with Mistress Snark, Jezebel and ...

Afternoon tea is a most civilized British invention – an opportunity to snack with impunity. However, in Mistress Snark’s parlor, you never know what might be floating in your tea or what those cute little sandwiches are hiding under the bread.

A tired update

We went with the skinny portion to the hospital at six this morning.  Remarkably promptly he was wheeled off theatre-wards at 7.15.  So we came home and waited.  Not patiently, not happily, but we waited.  We were told that he was scheduled for a four hour operation - which would probably start at 9, and would have an hour or so in recovery after that.  'Ring the hospital around 2, to see where he is.'

Which I diligently did.  Patient enquiries told me he had gone to Ward 10A (surgical) and put me through to the ward.  The first sister said that she had never heard of him - but would check.  She came back and told me which room he was in.  'I cannot discuss his condition over the phone' and then added 'but I can tell you he is recovering well.  Afternoon visiting hours start at 3pm.' 

So we arrived at Ward 10A at 3pm to discover he was not, and had not been there.  There was a space for him (name on wall) it is true, but that was all there was.  Hiss and spit.

Further enquiries revealed that he was still in recovery, expected to arrive at the ward 'in the next half hour'.  So we waited.  And waited.  He was finally wheeled past at quarter to five.

Respiratory issues had kept him in recovery.  If his pain was addressed, his breathing slowed to unacceptable levels.  Hiss and spit.

When he arrived he was conscious, breathing, and his pain was manageable.  All good.  The operation seems to have been completed satisfactorily (of course I haven't spoken to the surgeon).  There are some bleeding issues, but they are not unexpected.  His condition will be closely monitored tonight.

He was drifting off, so we left.  I am not certain that he will remember we were there - though the bags we brought in and unpacked should give him a hint in the morning when he surfaces again.

He is not comfortable - but he is alive. 

I am enjoying wine o'clock and will have an early night.

More updates, when I have more to report...

Sunday Selections #106

Sunday Selections was originally brought to us by Kim, of Frogpondsrock, as an ongoing meme where participants could post previously unused photos languishing in their files. 

The meme is now continued by River at Drifting through life.  The rules are so simple as to be almost non-existent.  Post some photos under the title Sunday Selections and link back to River.

Like River I generally run with a theme. Today it is the fishtank which lives in the corner of our lounge.  It had been looking a little very sad so has been extensively rejuvenated, just in time for the skinny portion's sister to arrive.  (She, like the skinny portion himself, is very fond of tropical fish).

Tomorow is D Day.  We are to be at the hospital at 6am (which horrifies the man whose preference it is to spring out of bed at the crack of noon).  I have however (being a basically mean person) pointed out to him that he can sleep the rest of the day away.  Hopefully he will be one of the first cabs off the rank.  After which the waiting begins.  I do not expect to hear anything until the middle of the afternoon at the earliest so his sister and I will come home to where we can pace in comfort.  We will go back to the hospital to visit him as soon as we can, though I don't expect he will remember it.  That first visit is to comfort and reassure me anyway.

Thank you so much for all your support.  I cannot tell you just how much it has meant to me.  I will post updates when I know anything, or of my frustration if I don't.

Finally we are moving forward.

What a week it has been.

The smaller portion was operated on last Friday to restore an ileostomy.  Not the outcome either of us wanted, but necessary.  In the following days his surgeon gained the nickname of the 'invisible surgeon'.  He apparently made no visits to the hospital over the weekend, leaving it to the hospital registrar or to the intern.  Their visits all took place at a time when the smaller portion was either non compos mentis, asleep or in the shower.  We know that if either a bagless state or a return to the more manageable colostomy are possible at least one more and more likely two more operations will be necessary.  We wanted to discuss what had been done, and what the smaller portion's could expect in his future.  It seems these are unreasonable requirements.

Finally on Monday the smaller portion was allowed clear fluids.  Which he promptly vomited.  So they moved him back to nil by mouth.  He was rushed off to x-ray and there was talk that he had a new blockage - in the small bowel to match the untreated one in his large bowel.  There were murmurs of leaving it to settle by itself. There were also talks of further surgery.   His sister and I were less than happy and tried (very hard) to make an appointment to see his surgeon.

'The doctors do their rounds between six and eight in the morning.  You would not be welcome.'
'You could come in around nine and ask to have the registrar paged.  Lots of doctors (including by inference the one we wanted) are on holidays.  It is school holidays you know.'

So we came in the next morning, arriving at about quarter to nine.  The registrar was paged.  And paged again, and again, and again.  Finally the intern arrived to say that if we waited he knew we were here.

The registrar arrived (over three hours after he was first paged).  He really didn't want to talk to us.  Tough.  He pooh-poohed the idea that the smaller portion had another blockage, while leaving it open as a remote possibility.  He professed himself very happy with progress, but refused to discuss any long term prospects.  'They are matters which should be discussed with the surgeon at the follow-up consultation.'  He agreed (when pushed) that it may benefit the smaller portion to hear that he didn't have another blockage.  When it became obvious that we were not going anywhere he proceeded to do just that, adding that the smaller portion could have fluids again.

Which the smaller portion lost fairly dramatically during visiting hours that night.  I gather that many visitors to the ward  (we were not there) were adversely affected.  How sad, never mind.  Back to ice and intravenous anti-nausea medication.  We also found out - after the event naturally, that the smaller portion has been on the emergency surgery list for the twenty-four hours which included our discussion with the registrar.  Hiss and spit.

The next night?  The same as the first, just a little bit louder and a whole lot worse.

Somewhere in the middle of the week we, as opposed to he, had a very bad day.  I made myself a cup of tea.  I put the teabag in my cup, added the water and then the milk.  I took a sip.  I took another sip.  It was cold.  I hadn't turned the jug on.  I finished it.  Later that day his sister wanted a cup of soup.  She tipped the packet into her bowl.  She added water.  She stirred it, she tasted it, you guessed it. She drank it.   We think it was on the same day that I shut her in the garage.  Like a good passenger I hopped out of the car and opened up the garage.  She drove in.  I shut the garage.  'Haven't you forgotten something?'.  'No, what?'  'Me.'  Oops.

Today we have had a turn around.  The doctors have been round and have promoted him to eating food again.  And he had porridge (which he dislikes) for breakfast and an egg and lettuce sandwich (which he hates) for lunch.  When last we saw him he had retained both of them.  We have however told him that if the hospital makes going home noises tomorrow he is to tell them that he doesn't have enough money for a taxi home, has no house keys and has no-one to pick him up.  I hope he heard that.

There have, as usual, been some wonderful sights to brighten our days.

Early morning glory.

Birdy joy at the hospital.

More birdy joy.

And the delights of a gentle rain and low cloud down the valley this afternoon.

Thank you all for your support and good wishes.  They have meant a lot.  In the coming days I hope to be able to come back and pay some long overdue visits to your blogs.

Not a good day

The Smaller Portion goes into surgery to replace the ileostomy at one o'clock today.  There will be at least another one and probably two operations after this.  The next operation is tentatively scheduled for three months from now.  Joy and bliss.

The bad, the worse and the beautiful

This has not been a good week.  Until life calms down a bit I will continue flying into the blogosphere, depositing a post and flying out again.  I am hoping that soon I will have the time and spare brain cells to enable me to read and comment on other people's posts.

The Smaller Portion is still in hospital.  His bowels are still partially (almost completely) blocked.  Today he had a colonoscopy - a last ditch attempt to avoid going back into major surgery.  It failed.

 He was told nothing after he was returned to the ward except that from midnight he was on 'nil by mouth'.   The nursing staff knew, or professed to know nothing.  Sadly, fasting spells imminent surgery to us.  (Since the 19th of June when he had his last surgery the Smaller Portion has been on an unrestricted diet for only three and a half days).

While I was visiting him a baby doctor appeared (I use the term baby doctor to describe one with limited experience and/or authority.  In this instance he had nothing to do with maternity care)  He confirmed that the colonoscopy had not been able to clear the blockage.  He went on to say that this meant that something would have to be done.  And from that point he descended into mealy mouthed platitudes.  Perhaps a colostomy would be needed.  Or then again it could be an ileostomy. Almost certainly a bag would be necessary, or maybe it wouldn't be.  It might be needed permanently- or maybe not.  Perhaps they would remove the narrowed segment of bowel and do a resection.  Or maybe not.  The surgical team would need to meet and discuss the options.  Which left us in limbo - not a nice place to be

The Smaller Portion and I know that he would need to sign a consent form before they could do anything - and that he needed much more information.  The fasting from midnight suggested to us that they wanted to get him to theatre early tomorrow.  If they are able to tell him what they plan to do he will sign the consent form and ring me.  Joy and bliss.

It has certainly been a stressful week, but there have also been magical moments of beauty which I treasured.  Early in the week I thought I had lost my wallet.  I went tearing outside just after dawn to check the car, and was greeted by this (and the wallet was indeed on the floor of the car).

The cockatoos at the hospital continue to add pleasure to our afternoon visits - they are elsewhere in the mornings.

And this week another bird has brightened our days.  We have been seeing one or two Red-Rumped Parrots, so I have taken to bringing my camera up to the hospital.  Today, when we badly needed the cheer, a small flock of them were in the tree outside the hospital entry.  Not only were they there, they were co-operative as well.

And I almost forgot.  Tonight's sunset was pretty special as well.