Thanks for sharing your experiences . . .

[Proud Wife]

It's because we know exactly what you are going through. I don't need to say any more than that.

How I wish I'd never clapped eyes on this forum. Sorry, I should re-word that say HAD TO clap eyes on...

Looking forward to next installment. I hope both procedures are going very well for Peter.

lots of love x

[Justamo]

Sit down, pour a glass of wine/cuppa tea, let the cat in/out, and prepare to be bored stupid .

I’ve got him home again. He went in yesterday morning to have the First Procedure done, which was a replacement of the plastic stent with a metal one, which begs the question as to why they didn’t put in a metal one in the first place. So he had his rebore, and was then sent up to another ward to recover and flirt with nurses and generally make a nuisance of himself. He reached the Recovery Ward at about 14.00, and I arrived just after.

We were told that, ”He must bring in his own medications, and his own Hypo Recovery Kit. I hastily assembled half a packet of dextrose and a bottle of Lucozade. All the components of Peter’s own medication from painkillers to aspirin, from insulin to Lucozade, from needles to creons were tidily packed in a little transparent bag (think Airport Security...) and a neatly typed card was placed inside listing every item and dosage instructions. Not for the nurses’ benefit – it was in case Peter forgot what he was actually meant to be taking.

Almost immediately the medicine bag was confiscated. “No need for that”, said the bossy staff nurse, “We can easily obtain all this medication”, and, “WHAT are these – they’ve got to be locked up”. Thinking that I may have accidentally packed a phial of Ebola virus I looked and saw that she was holding the Oxycodone at arms’ length. So I quickly snatched them back and put them in my handbag before she could call for a couple of burly security guards to take the modest little packet away.

After his procedure Peter settled wearily and woozily into bed and slept off the sedation. When I went back at evening visiting he was Sitting Up And Taking Notice and had a list of complaints as long as your arm. They didn’t give him his creons before his meal. They didn’t give him his insulin. They hadn’t checked his blood. He didn’t like the colour of the curtains. It was noisy. It was too quiet. Nobody spoke. Everybody chattered. More disturbingly for me, none of the staff knew that he was meant to have a Second Procedure this morning.

“I’m not sure about that”, said Staff Nurse. “Nobody told us about a Second Procedure”. She made it sound like a back street abortion. Several thousand phone calls later she grudgingly conceded that, yes, Peter could have a second procedure, and at great personal trouble she would ensure that he was delivered to the right door at approximately the right time.

So this morning Peter was trundled off to the Endoscopy Department for the Second Procedure.

Have you seen BT OpenReach engineers down holes in the road, feeding in zillions of cables which magically meet up again and bring the gift (?) of the internet into our homes ? Well, that’s how Peter’s description of the Second Procedure sounded. A doctor enthusiastically shovelled all sorts of cables and tools down his throat and pushed and poked around his innards, shoving various organs to one side (imagine Harrods on sale day and you'll get the idea) so that he could take pictures of other organs, specifically the adrenal gland.

Tunnelling completed, they sent him back to the ward which is where I found him at afternoon visiting, looking weary and wan and Wanting To Go Home Right Naffing Now. Again, nobody had checked his blood or given him insulin and I think that having got accustomed (after just a week or so) to our calm routine of blood, insulin, food, he couldn’t get used to the apparently random way in which he was nursed.

Yes, I know nurses are busy. Yes, I know they all have degrees and are Very Highly Trained. But the nurses on this ward did not make my guy feel safe and secure so I was delighted when they agreed that he could go home with me.

So he’s home. Well, actually he’s gone out to see friends. An activity much encouraged by me because the sooner he starts doing ‘normal’ things the better. I’m listening for the phone because he is going to ring when he wants to be collected – not wise to drive after two lots of sedation.

There is a gale blowing outside and the rain is coming down in bucket loads, so I feel quite smug about sending all the laundry to the laundry, if you know what I mean.

And now I really have descended into logorrhoea *

Love, Mo

*a communication disorder resulting in incoherent talkativeness

[Guest]

Yep, about right, that's why you mustn't let them have his medication and you must have a secret supply of creon and other stuff so you can save him from the hospital staff!

Glad he is home and doing stuff. Hope you are taking the opportunity to have a rest

Much love, M xx

[sandraW]

Mo, I wasn't bored in the slightest, I enjoy reading your posts

Its such a shame that the basic nursing care isn't there anymore, Trevor was only in about 3 times and none of the nurses seemed to understand about the Creon, I always made sure I left it in Trevor's locker "hidden" in his toiletries bag, so he could have it himself when necessary, not ideal when you are not well though.

It sounds as though Peter is doing great, visiting friends so soon after 2 uncomfortable procedures is good going for anyone.

Enjoy your laundry from the laundry, take care Sandrax xx

[Dandygal76]

It is too early for wine so I will have to settle for tea.

Fab Peter is back and you survived your ordeal of the 'nightmare of medication in hospital' that we have seen so often on here. My mother is truly warned to tuck them in her knickers in case she is frisked and smuggle them in and out if dad goes in!

That is dreadful about the procedure, I have experienced that sort of thing before and it is not nice. When my youngest was 3 he was in hospital with his eyes sealed shut with a meningitis type illness. They did not know their (edited - moderator) from their elbows throughout the ordeal and this was for a frightened child who was truly fighting for his life. One doctor gave him an injection to sedate him for a procedure and the sedation only lasts 30 minutes but they had not arranged for a doctor to supervise him and transport him down so had to wait and then sedate my poor baby again. I had to fight the whole way at his medication time (which is critical to have on time - 3 of the strongest antibiotics in separate drips every 3 hours). He ended up on blue lights to xx and the change was amazing. Everything then was bang on. I swear not 5 mins out either way. So if they have the right professional set up it does not have to be like that. It is unbelievable stress it causes when they are incompetent in what is a absolute living nightmare situation anyway.

I cannot recall what you said the Endoscopy was for? (I would read back but very short of time - I am afraid my memory is useless). Why his adrenal gland?

xx

[Justamo]

Hello Dandygirl (Google went for Sandy that time). The endoscopy was to investigate Peter's left adrenal gland because it's twice the size of the other one. Mr XXX said it "Wasn't significant", but it was one of the reasons the anaesthetist didn't want to proceed with the Whipple's.

So they shoved a tube down his throat and put a cable down with an ultrasound probe on the end. I'm not much good at geography so I'm amazed that they could navigate to the top of his kidney but they seemed quite pleased with themselves. Sounds a bit like getting your ears syringed via your nose if you see what I mean.

The story of your three year-old is scary. Poor little boy, but even worse for you.

You take care Dandygirl. Speak soon

Love

Mo

[Proud Wife]

I can't think of anything worse DG. There is no excuse for any hospital treating any patient in that way, let alone a frightened and poorly 3 year old.

Pleased the patient was soon back on his feet. How's the cat dare I ask?!! Hope you are okay too xx

[Justamo]

I have issues with the receptionists at my husband's doctor's practice.

They have recently introduced a rule to say that they will not accept prescription requests over the phone, requests must be hand-delivered to a special little box on the desk or posted. I believe that's the case all over the country now. So on Monday, before we began any expeditions to unknown departments of our hospital, I wrote out a prescription request, and at the top of it (and at the foot as well, just to be sure) I wrote I WILL COLLECT THIS PRESCRIPTION FROM THE SURGERY. There. Not hard is it ? Anybody have any difficulty with that ? It was in big letters, in RED PEN, and not in joined up writing.

This is because if they sent the prescription to our usual pharmacy there was a good chance that one or more of the items would not be available, and Peter was running very short of painkillers. I wanted to collect it in person so that in the probable event of Pharmacy A not having stuff, I could try Pharmacy B, C, D or even, in dire straits, Boots.

Having collected my beloved from hospital yesterday afternoon I drove past the Doctor's and popped in to ask for the prescription. "Um, it's not here", said the blonde one. With difficulty, I remained courteous. "Could you find out where it's gone then please", I said. The brunette one raised her eyes to heaven, and the two of them scuttled off to come back with the news that the "Computer says it's gone to the pharmacy". "Which pharmacy ?". Off they went again, and came back with the red-haired one who hates me. Don't know why, but she does. "Pharmacy A", she said triumphantly. "Like always". I didn't say, "And which part of collect from surgery did you have difficulty with ?" But I did ask why it had gone to a pharmacy when I had specifically requested 'collect from surgery'. "Because it just did, that's why".

I thought about banging my head on the wall, and then I thought about banging her head on the wall. After the day we had had I even thought about flinging myself on the ground and drumming my heels. Instead I made a dignified exit, spoiled by catching my jacket sleeve on the door handle and I swear I could feel them grinning behind me.

In the car Peter was grey with exhaustion and the beginnings of pain, so a quick drive home via Pharmacy A was called for. Guess what ? Yup, Pharmacy A didn't have the pain killers. Or some other items either, but they weren't so urgent.

I seldom challenge those in authority. It's probably because I was brought up to respect policemen, shop assistants, my Nanny, anybody in a white coat, people in uniform generally, teachers, Brown Owl, and the Queen. Gawd bless her.

Three people, and possibly more in the back office, were incapable of reading a note and acting accordingly, and the result was that my darling was going to be sore until tomorrow. As I began to calm down it seemed to me that they should know the consequence of their inefficiency, so I phoned up and asked to speak to the person in charge.

I explained, very slowly and clearly, exactly what the result of their failure to read my note was: An elderly man, with a terminal illness, who had been through two horrible days in hospital, and who was now condemned to an evening and night of discomfort and pain. The Voice began to splutter about "The Computer said...." and then shut up. I told her that this was UNACCEPTABLE and how would she feel if her parent or partner was going through the same thing because somebody couldn't be bothered to do their job effectively.

To give her her due she did apologise. Furthermore, she would "Bring it to the attention of the Prescriptions Team". I was tempted to ask her to identify the team member who couldn't read, but I had made my point.

I daresay she got the benefit of my two days' frustration and misery at hospital and actually I don't care. I expect we'll get a po-faced attitude next time we go to the GP, but I said my piece politely yet assertively. Just like the videos show you. But I've never done it for real - until now.

Do you know, I'm getting mad even typing this out. Time to put the kettle on - I've got an emergency bottle of Prosecco but I want to go to the gym very early tomorrow and would rather not drink just now.

Peter had a hypo today while I was at the dentist so we've gone through the leaflet that the DN left us and he has a little bag with a spare blood tester thingy in it and a small bottle of Pepsi which he has agreed to take with him when he goes out. I'll make sure his buddies know about it too.

Everybody asleep now ? Don't take pills, read my posts instead, cheaper, environmentally friendly, and just as effective .. .. .. ..

Night.

X

PS - Thanks, Proud Wife, for enquiring after Boris. He is as well as can be expected and is currently in my bed (actually, inside the quilt cover, but that another story for another time) Sulking. Peter is doing Early Night with the Telly On, I am doing Typing Stuff and Boris is doing Sulking. He persuaded Peter that I had forgotten to feed him this morning, so Peter fed him again and he was sick on the white rug. Boris, not Peter. So now he's sulking because he only got half rations at tea time and is threatening to phone the cruelty man. "You're a Cat, Boris. Deal with it".

[Guest]

Dearest Mo,

Your frustration concerning prescriptions is one I raised at our surgery and with the palliative care team. I understand that our preferences concerning what pharmacy we want them to go to is on the computer system and that the dr raises them electronically so the process is automatic but it simply does not work with unpredictable illness. We had all sorts of trouble and that was with the surgery team on our side!

By the time we needed drugs for his syringe driver it was even worse as the doses were changing daily, prescriptions can only be collected (cannot be sent electronically) and the damned pharmacies often didn't have the drugs. In our case the ladies at the surgery used to ring round and check for us. You just don't need the added stress of worrying about getting the drugs at short notice. Again, you really need the whole team on board. Have a word with your GP. Ours allowed us to email requests directly to her which was great.

I hope both you and Peter get some rest and recuperation tonight and that you manage to build up a stock of just in case drugs.

Much love to you both, and may you sleep well xxx

[Ruthus]

I typed a long response last night and it hasn't uploaded. I hate it when that happens. I trained as a psychiatric nurse and have spent time on the wards. I always saw myself as highly competent and efficient. There were some fantastic nurses but also some not so good so it doesn't surprise me to hear people's experiences range from excellent to very poor. I know the NHS is under emmense pressure but I don't think there's any excuse for poor delivery of basic patient care.

One of the main roles is timely delivery of medication.

I have now experienced working in the NHS and being a patient and experiencing the differences which exist between staff, wards and hospitals. There is a wide spectrum.

The worst experience I had was in the general hospital on the acute medical ward. I was hardly seen by any nurses. I had to keep asking what was going on. I was told by one doctor they didn't want to worry me when I asked what they were investigating. At this point I'd already had a CT scan which had shown a mass on the head of my pancreas so I already had a pretty good idea of what it could be. I know the staff want to get all the information first but I felt like as a patient I'd suddenly become stupid. I mean come on I knew what they were looking for and I was already very worried so saying we don't want to worry you is fruitless.

One night I looked like I was asleep but wasn't and I overheard two nurses whispering at the end of my bed that I was being investigated for carcinoma. I then heard the night staff sat around the nursing station discussing my case. This was in the open ward. Again it seems that once you become a patient you can be treated by some staff as if you have suddenly become stupid and deaf. I know this was inappropriate to say the least but I can't face complaining to the hospital.

The same general hospital had to transport me to another hospital to have the ERCP procedure. I was very nervous about this. We were in rush hour traffic and the escorting nursing assistant talked about never knowing when your time is up (just to make me feel better) and then half way into the journey realized he had left my notes on the ward. We had to turn around and go back to the ward in rush hour traffic. Not ideal! I could go on as there are other bad experiences but I won't.

I've also had some very good care too which has been fantastic. I always took my own supply of medication onto the wards and kept it secret as didn't trust the staff to give me the correct medications at the right times. It's sad when individuals going through this terribly stressful time have to take personal responsibility over such things as they can't trust the health care professionals to get it right.

I'm glad your husband is home and I'm glad you rightly asserted yourself with the G.P receptionists. Good on you!

Ruth X

[Dandygal76]

Ruth - not sure if you know this but if when you submit your long post it takes you back to login then just log in, press back space 2 times to where you were and if you push on post reply the message will still come up. x

[Justamo]

Ruthus, nice to know that it isn't just me who was made to feel as though I was stupid. Not stupid, exactly, but patronised when I asked about Peter's insulin and creons.

Nobody actually said it, but the attitude was 'We're the experts around here, we know best'.

Our lovely nurses on the forum have probably spent YEARS gaining their experience and truly are experts. I thought I was being a bit possessive and precious about his treatment and was beating myself up for it, but your stories and Marmalade's sage advice have reassured me.

This morning I got an hour in the pool, only half if which was spent chatting to friends, so I felt quite virtuous, and this afternoon Peter is out with a mate, complete with his little hypo kit. I'm trying to choose between slobbing out on the sofa or cutting the grass.

Hope you are all OK, what would I have done without my buddies this week ?

Love, Mo.

[Guest]

Hi Mo, I'm glad you got some pool time. I'd cut the grass, fresh air and a bit of gentle exercise is good for your body and being in the garden amid nature is good for the soul. I hope you have a pleasant and uneventful weekend but we will be around if you need us. Sending a special big hug just for you xxxx

[Justamo]

Just in from cutting the grass and generally tidying up to find your message Marmalade !

Great minds . . .

X

[Veema]

When Nige had his whipples op, he still had his picc line in...no-one would take blood from it...I had been trained to flush it, and when the junior doctor tried several times to get blood from a vein and failed, I just unwrapped the picc line and took the required vials of blood for him, flushed it, redressed it and Bobs your uncle...unbelievable.

We also experienced both extremes of care, from very, very good, to very, very poor.

Oh...and I came home from the pub at lunch time to find my neighbour had cut my grass!

Vx

[Justamo]

Oh V, you wanton hussy.

The pub. At lunchtime. Disgraceful.

XX

[Guest]

Ha ha ha! Good for you V, and well done Mo, I think we are great too

M xx

[Justamo]

Monday – thinking about going to hospital

Tuesday – hospital

Wednesday – hospital

Thursday – recovering from hospital

Friday – celebrating not being in hospital, going out and walking without carbs = hypo

So what can we do that’s really special for Saturday ? It’s a lovely bright, sunny day and we could go to the Zoo, we could go to the Seaside or we could go to the Pictures. Instead, Peter chose to have a huge infection which suddenly manifested straight after his insulin injection this morning, and involved shaking as though he was possessed, (think Exorcist), going scarlet in the face, insisting that it was several degrees below zero and demanding thermal blankets and the central heating be turned up and generally putting the fear of God into me.

I rang NHS24 and although I could barely understand the call operator’s accent, I explained what was happening. “He’s shaking from head to foot and really seems ill”. She put me through to a local operator who went over the symptoms with me – I had checked his blood while I was speaking to her and it certainly wasn’t a hypo, so she asked me to take his temperature. It was a point or two up, so she said a doctor would call as soon as possible.

By the time the doctor arrived an hour or so later the extreme shaking had stopped, although he still had a tremor. The doctor checked him carefully, asked what had happened that week, and surmised that it was an infection from having the stent inserted, or possibly from the endoscopy/ultrasound. “Bacterial infection often produces rigor”. (when I checked it on Google I went to Yahoo by mistake and RIGOR offered me ‘rigor mortis in cats’. Thanks Yahoo. He gave us an antibiotic, suggested that we see our GP on Monday, and after assuring us that Peter really was OK, left.

So My Patient has had another day in bed, feeling rotten, and the lovely sunshine outside has made him depressed because he can’t go out and enjoy it. He was told to drink plenty of liquids and I’ve been through the soft drink aisles of three major supermarkets and bought practically every bottle on the shelves. The only result of that has been a bumper week for the recycling boys and coloured water in our local river from all the stuff I’ve tipped down the sink. He’s now settled for water, but whoever took the last ice cube from the freezer forgot to put ice cube bags back in, so even water is not really acceptable because it’s not cold enough.

Tonight’s carefully prepared dinner of Chicken Kiev and salad has been downgraded to a tuna sandwich which is all My Patient will agree to, but he has at least had some tea and biscuits, and I do have some little pots of whipped cream in the freezer which will go with some fruit and it will help to up the calorie count for today. He can eat whatever he pleases as far as I’m concerned, so long as he enjoys it, but it would be nice to have some extra weight ‘in reserve’ as it were, for when he really needs it.

I’ve had an afternoon in my study (right next to Peter’s bedroom) fiddling about with designs and strangely I’ve come up with something quite nice, so I have salvaged something from the day. I’ve listened to Lark Ascending, Turandot, New World Symphony, the Intermezzo from Cavalleria Rusticana, the Rolling Stones, Vivaldi, Dusty Springfield, Thomas Tallis, Bob Dylan and Elgar. And some hymns. I can hear My Patient swearing loudly at the football results, so he’s obviously sitting up and taking notice. He is currently doubting the parentage of the goalie, and has told the ref to go forth and multiply (or words to that effect) so I’d better do his blood and make The Sandwich.

I’ve got lots more to say, but I am full of mercy and compassion at the moment (for you) so I’ll save it for later.

Speak soon,

Love Mo

[Guest]

Blood and sand Mo, you have some days. Well done for getting through another one and producing something worthwhile. You are doing great so treat yourself to a little rest when you can, you will need to be in tip top condition when he isn't.

Shouting at the football is a good sign, a palliative care nurse told me it showed that the patient was engaging with the world around him, which is true I guess and would tend to suggest Peter is feeling a little better, I hope so.

I am hoping and praying that you get an uneventful day today (I see it's 1am) and that I get an easy run to Gatwick with a very big Italian in my small German car. It's going to be interesting....

Rest easy both of you, M xx

[Proud Wife]

I hope this morning finds Peter feeling much better and that you are both able to enjoy a pleasant event-less day together. My love to you all, especially Boris xx

[Justamo]

Proud Wife and Marmalade, thank you for your kind responses.

The Number Two man in my life, Boris, known to family and friends as Boo, has not covered himself in glory today Proud Wife. This morning he came and helped put out the washing and then went walkabout in the garden and refused to come when called. I threatened him with a Cats' Home, I cajoled with Sweeties, I made a noise like a Tin of Tuna, all to no avail. Eventually I spotted a large white stern poking out of a rather nice shrub (Rodgersia Pinnata) and captured my reluctant boy and shut him firmly indoors. He doesn't know his postcode and does not wear a collar, and has beauty in plenty at the expense of his brains. So he wouldn't find his way home if he went outside the garden.

I was not the personification of sweetness and light this morning because we'd had a bloody awful night. Peter got 'The Rigors' again and complained about the sub-Arctic temperature in his bedroom. I changed the sweaty sheets twice, his T-shirt three times and it was quite scary while it lasted; paracetamol eventually did the trick and clearly we have to visit the GP tomorrow. I have a hunch that it's something to do with his adrenal gland, but I don't know why I think that. Before I retired my proper job was all about computing and car sales administration, my vocation in life is art and designing and graphics and sewing and stuff, and other than doing the odd bit of research for my cousin who is a Professor of Psychiatry, medicine is a closed book. And it can stay that way.

So this morning I dealt with three soaking wet T-shirts, two wet sheets, assorted underwear and Boris's second-best blanket and luckily it has been the most glorious day here and everything is dry.

Obviously you don't read my posts for examples of good taste because I am guaranteed to lower the tone at the drop of a hat. But if you are easily offended, look away now.

The doctor who came to attend to my beloved in his hour of need yesterday was so drop-dead gorgeously good-looking I didn't think he was real. He had eyelashes about an inch long, he was tall and slim, and introduced himself as 'Ishmael Arabic Name'. I hastily conjured up ten of the twenty Arabic words I knew, and thankfully got them in more or less the right order, and after he had assured us that Peter would be alright and dispensed some antibiotics I very nearly asked him about my in-growing toenail just to keep a hold of him for a bit longer. When he left we conversed, briefly in Arabic (he's from Palestine) on the doorstep and I was just PRAYING that the woman next door could see us. (Not such a sad old fart now, am I Ms Next-Door ?)

Told you I would lower the tone. Poor Nanny used to hold up Our Dear Queen Mother as an example of how to behave ("What would Our Dear Queen Mother have done ?") but it was wasted on me.

Anyway, the important thing is that Peter feels a whole lot better and is currently doing his Pavarotti impression in the shower. When he starts on Nessun Dorma I'll stick my head round the door with a warm towel for him and by the time he gets to Toreador he'll be warm and dry. It's been WEEKS since he sang in the shower; this evil illness sends you up and down like a yo-yo.

This evening he says he wants to come to Mass with me (I missed yesterday because of our domestic dramas) and it's such a beautiful evening he'll probably enjoy it. The stained glass windows will be perfect in late sunshine and although I did not approve of the expense when they were installed they certainly are stunning.

So that was our day; various typing jobs done, the ironing up to date - well, not beautifully ironed, more folded up the size of an envelope and the iron banged on top - but all is well. For now, anyway.

Speak tomorrow, but I'll be reading any news tonight.

Love, Mo

[Justamo]

Oops - I almost forgot !

A proper roast dinner too. Haven't cooked one of those since early July.

And Boris got a share as well.

xx

[Guest]

Brilliant, super! Now you both get an early night, give Peter a preventive paracetamol and put Poldark on the TV. Whether you like historical drama or not Mr Turner has eyelashes and muscles aplenty. My friend Sally says that just because you have had your dinner it doesn't stop you looking at the menu

Oh, top tip, if you see a hooded towelling robe buy it. If Peter is weary he can just slip it on after his shower and lay on the bed or sit around, he will dry off without any effort and they are really cosy.

I hope you enjoy the mass and that the night is restful. Thinking of you both xxx

[Guest]

Forgot Boris, does he like Dreamies? My daughters huge black cat called Bertie will turn somersaults for them but they are used sparingly as "high value treats".

Night night, M xx

[Justamo]

Boris would sell his grandmother for a packet of Dreamies. He is a Dreamie-Junkie. He would be a chunky-junkie if he could open the cupboard because they are calorie-laden. Crystal-meth for cats.

We don't let him watch that advert where the cat bores a hole in the wall just in case he gets ideas . . .