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Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Wed Jan 25, 2017 4:02 pm

Elaine, I know what you mean about being 'highly charged'. Somewhere in my posts I think I have said that I had the thoroughly stupid idea (but it seemed sensible at the time) that the harder I worked looking after Peter then the quicker he would improve. It was a bit like an Open University Course - the more knowledge I could cram into my head the better.

What was all that about ? Really stupid; instead of one sick person and his carer you get one sick person plus a gibbering wreck who is no use whatsoever. And who can't enjoy today in case tomorrow is awful.

The last time Peter was in hospital there was a PC patient in the bed next to him. The nursing staff gave him his Creons to take along with his night sedation. And he solemnly told me that they helped him to sleep. Marmalade says to smuggle drugs into hospital and dish them out when appropriate, and that's what I'll do next time. Apart from loved ones with PC I bet we've all got huge handbags . . .

Hope Pete improves soon and you get him home to look after him properly.
Take care Elaine, much love, Mo

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Wed Jan 25, 2017 7:16 pm

Yes, absolutely, good point Mo, have plenty of Creon and make sure Pete has a secret supply in his wash bag. A lot of nurses and helpers don't seem to understand that they are not drugs, do not need to be locked up and should be given before and with food not as part of a drugs round

M x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Wed Jan 25, 2017 9:17 pm

M and Mo what is that all about that nursing staff don't know about Creon......when I asked them to always ensure that Pete was given them with meals they were totally confused. For the third time I have went in and seen Pete not wearing his white stockings......actually left a pair over the end of the bed thinking that plus his daily injections would give them a clue that they had to go on. Especially when he was bed bound for 4 days.
Any ways he looked fantastic tonight and is now off one of the drips and comes off the remaining one tonight and commences oral antibiotics and his diarrhoea stopped this afternoon so I don't think it will be too long until he is home again....so looking forward to it. He has been lucky that this is his chemo break week so he hasn't missed out on any as that is his biggest worry. I am going to take everyone's advice and get to bed early tonight especially now we seem to have come out the other end of another crisis.
Mo I know exactly what you mean I think maybe I am doing the same and thinking with good care and if I can do as much as I can for Pete that he will get better ......oh boy can I delude myself at times. Thank you and have a nice evening .
Elaine
X
Ps had great advice and support from our nurses again , they have gave me the info on Petes setback and explained the many things I didnt understand.. Thank you so much. X

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Thu Jan 26, 2017 10:02 am

Yes Elaine, when there is no crisis sleep and catch up and be grateful for that time. I have been night crawling since last week and tiredness is truly horrible around this. I hope you did get a good sleep. My mum said she woke up at 4am this morning and she was already crying before she woke up. That is awful.

As for the creon, we have stocked up over time and dad has his own stash but when they asked about what they were when they spotted it they did seem to understand what they are and not take them off him. It will be great when he can come home and I am glad it looks as though you will not miss the chemo. Enjoy the rest of the chemo break.

My mum has also turned into super cleaner / carer. Take time for yourselves always because it is exhausting. x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Fri Jan 27, 2017 10:09 pm

Another down day last night Pete got moved to another ward out of isolation with all day visiting well 1.30 To 8.30pm which was great. He got moved after visiting was over. I was real happy ay going up there for 1.30pm. And that was when the happiness ended. First off he had a rather long nose bleed yesterday which lasted for hours and his tshirt caught quite a lot of blood as he changed hankies all the time. Said his WBC and his neutrophils were back up again and he was now on oral antibiotics and tummy injections so he was in line for discharge soon. Thought when I went today he may get home, instead I asked a nurse where Pete was and was told he was back in isolation due to diarrhoea this morning and as they didn't know what was causing it they were keeping him in til Monday. I said I knew what was causing it they probably hadn't been giving him Creon again. She said what do you mean and I told her that he has to take that with food and drinks only to be told it was locked in his drug cupboard since he came in last night.. Then proceeded to tell me I don't have a key but will find someone who does. Then I goes into his room and he still has on yesterday's tshirt complete with encrusted blood. Got him changed and he said they had woke him up during the night as his blood pressure was low because of prolonged nose bleed. They had given him a large glass of milk also a milky coffee with loads of sugar but no Creon resulting in it going straight through him. Same this morning he couldn't face breakfast so a large glass of milk and a coffee same result. Proceeded to tidy up his table and locker top a multitude of paper cups and the measures that they had dispensed his pills ( but no Creon ) in. There were two bins in his room one for general waste and an orange lidded one for clinical waste. The black one had no bag in it and was open bottomed so unable to get rid of rubbish. The orange lidded one was so full of waste that the lid was raised and dressings hanging out. I again approached the desk to ask that bin be emptied as Pete doesn't have dressings therefore they must belong to previous occupant and they were not best pleased. Also asked for a bag to be put in black so that I could deposit Petes rubbish. I felt as though I could just pick him up and bring him home. I will phone and ask for a meeting with whoever is in charge of the ward tomorrow ....I just feel he is not getting care conducive to being discharged. Glad I have all that out my system. Home now have pyjamas on a vodka poured and the TVs on....shattered.
Elaine
X

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Fri Jan 27, 2017 10:53 pm

Poor Pete. Poor you.

Perhaps our feelings are all a but heightened at times like this, but nurses can either be absolute angels, or people clearly in the wrong job and marking time till they win the lottery. It's the impression that some of them give you that they are omnipotent and you are a miserable peasant with no right to question anything. If you are the patient you can handle it, but when you see your loved one being neglected you snap straight into protective mode and you'll take anybody on - and win.

I've already had my say about creons this evening (Google tried to type creosote but I caught it in time) but I can't remember whose thread I was on. One of the symptoms of PC is having a partner with an addled brain.

Enjoy your drink Elaine and try to relax.
God bless, love Mo

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Newly Diagnosed

Postby Quickasyoucan » Sat Jan 28, 2017 2:03 am

Oh Elaine poor you and Pete. I hope tomorrow is a brighter day for you and an up on the roller coaster. Thank you for thinking of dad on our thread. Luckily dad is being v well looked after in hospital except the creon drought!
You are doing v well being so strong and organised. My hat goes off to you. Take care and best wishes to Pete

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Sat Jan 28, 2017 6:29 pm

You stand up for your man Elaine...you can do it in a polite but very firm manner...his treatment sounds shocking, sometimes the state if things astound me. I remember having to take blood from Nige's line when he was in hospital because the nurses weren't allowed to touch it and after stabbing him in various places still couldn't get any.

I hope he perks up soon and gets home.

I sent you a friend request on Facebook...have you seen it?

Vx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Sun Jan 29, 2017 7:29 am

Elaine, we have stashes of creon.. I am not a pharmacist but we all know it is not a medicine. I see you are friends with PW. Link up with me and I will get you some creon today by courier if this is not sorted and you have none spare. Or, repeat prescript at your GP first thing. The hospital is never allowed to take any of dads drugs, they are firmly hidden. We never give him anything outside of the hospital routine other than creon though but if we needed to, I probably would after telling them I am about to if they do not sort out the symptom (we have to say in case it reacts to other drugs). But I must say MK hospital are great and they seem to get creon. In fact they are just great. If your hospital is pants then you also do not have to stay there... I know that can be a logistical nightmare when they are ill but you have the choice to move if you can. Stay calm and polite and firm. They are more helpful with the nicest patients and family than the fraught and distraught. x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sun Jan 29, 2017 9:03 am

DG thank you for all your advice I now have a ziplock bag with me that has samples of everyone of Petes medication and a fair old stash of Creon. An added problem we have is Pete had a subrachanoid brain heammorage 18 years ago and his memory can be haphazard at times but even worse now so they really have to treat Creon as something that they have to constantly be aware that he takes. Locked in a cupboard is out of sight out of mind to him. His platelets were really low yesterday and they were going to transfuse him but by afternoon they were on the up again......this week has been a case of fix one problem and another pops up. Still onwards and upwards as they say today's a new day. Tank you for all your advice DG and I am constantly wishing your Dad all the best .
Elaine
X

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Sun Jan 29, 2017 9:04 am

BTW - dad is back in hospital. 12 - 8 visiting and I called at 7am to say mum is coming earlier. We chatted and they said they need to bathe people and I said that is fine, what is the earliest time that suits you and they said 10am. If dad needed earlier then mum would have gone but right now, that time works for all... not sure about him though as no signal in the ward. So, please do not be constricted by visiting times at all. I will update with our visiting times tomorrow after I see him today. But it will be a discussion, mutual decision and / or what we decide is best for dad. I have not seen how this ward works but I was not overly impressed that the person looking after him on the night shift could not understand what I was saying and repeated the same thing about dad and did not answer my query. Go with your gut always. The hospital have been amazing so I am keeping an open mind and we are being respectful of just mum being there until proper visiting. xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Sun Jan 29, 2017 9:15 am

Elaine, I have super letters for everything that I can adapt to any situation. If you need that creon right where he can see it then I will write you a letter to give to the ward manager today. Very polite but I bet they change their stance when in writing and it will naturally escalate without complaint. Once in writing they should respond differently... they will think about your rights more. I am never rude but it will most likely work. x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sun Jan 29, 2017 5:50 pm

DG you have too much to see to right now so I will take up your kind offer but only once your Dad is stable again. Could you mention that his previous medical history makes it very doubtful if he remembers to take it and may need prompted. Thank you so much. Have been thinking of every one of you all day
Elaine
X

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Sun Jan 29, 2017 8:12 pm

And we have been thinking of you and Pete. Never far from our thoughts. We old hands are always lurking about in the background, just in case xx

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Newly Diagnosed

Postby Quickasyoucan » Tue Jan 31, 2017 7:44 am

How is Pete Elaine ?