Hello night owls and the rest

Hi  

Oh I'm so sorry I didn't check the Group before now! I usually do that first and then do my jigsaws or read my book but earlier I had a PM from a friend here and once I'd replied (a long reply) then tried to send it, it disappeared into thin air. So before checking the Group Activity, I decided to do some jigsaws and read for a bit. I'm usually just getting to sleep as most people are about to waken up!

Anyway back to you, you poor thing, what a time you've had! As you say "we" know we are better off at home but sometimes they are so persuasive that we need to go to A&E or be admitted, sometimes it's hard to say no. Especially when your husband will be the one to take care of you if you, it must be very scary for him to have the responsibility when you are so poorly! I also have real problems with cannulas and I hate it when they suggest my feet. I've only had it there once and it was so painful, now I just refuse to have it there. I'm assuming they knew you were going for a scan when they inserted the cannula? So why oh why, didn't they use the correct size, there's no excuse for that at all. Then to find out hours later, the expert hadn't even been asked to change it!

Now as if that wasn't enough, you had the chair or bed problem. However to me the worst thing of all is the dirty toilet and the nurse saying the cleaner will do it in the morning! That's shocking! It happened to me once when I went in for surgery and had a private room and toilet/shower room and the dust was thick in the corners, there were cobwebs etc and the toilet itself was horrendous just like you describe. I pressed my buzzer and told the nurse when she came but she said she was a nurse not a cleaner! Then the surgeon popped in to see I had settled in and I told him I was about to discharge myself. Of course when he asked why (as I knew he would) I asked him to have a look in the toilet and asked if he was the patient, would he take the chance of getting an infection! He looked, said he'd be back shortly and brought the Staff Nurse who also went in. Within 15 minutes, there were three cleaners in there until it was shining! Now the upshot was, I was sent to Coventry by the auxiliaries as they help the cleaners. For the duration of my stay, I got meals and night time drink almost thrown at me, but I was very polite to them all and laughed when I told my husband! I'd rather no one spoke to me than catch an infection, so it didn't bother me at all!   Please don't use the toilet until it is cleaned. Use the nearest clean one.

I hope you questioned why they spoke to your husband about your condition and not to you directly! Oh I would have seen red and I'm normally quite placid. I don't tolerate things now at all, don't know if it's more to do with age than cancer but I speak up when I need to!

I hope you get home very soon and their diagnosis is wrong! Good luck! If you've fallen asleep, you will be wakened soon so that they can make your bed before the shift changes!! Oh I remember it well! 

Thanks Annette not made it to sleep but I have tried my very best 

It got worse I got into the bed on the ward and the top sheet was covered in some raised deposits I actually hope blood as I had pulled it up to my face before noticing. The nurse did very quickly change it. Then having reached absolute exhaustion I noticed I was directly in line with the security light which I was assured had to say on all night. They pulled the curtains but the light is above the curtain level. I finally ended up back in the chair facing the wall with my head on a pillow just to block out the light and stave off the terrible headache I was getting. Last time I was in I had my own room but the light would not turn off and I ended up sleeping in the shower room with my pillow in the sink.

I just hope and pray tomorrow brings good news and I can get out of here and get some sleep. I honestly don't know how you do it . 

Good morning  Maybe you will get home soon! I certainly hope so. Whatever hospital you are in sounds absolutely dire! Bathrooms that need cleaned and now dirty sheets yuk!                                 I know what you mean about those security lights, they are quite bright. Have you ever worn one of the masks people use on long haul flights? My husband brought me in one when I was in hospital and it certainly helped with the headaches. Worth a try! I managed about 30 minutes sleep during the night and I feel that way when your whole body is shakie when you need sleep. I thought I'd check to see how you were and then try for a nap. You said, You don't know how I do it? Neither do I!! But what choice do I have, it's either that or take pills that make me like a zombie all day! No thanks!

I hope the bathroom has been cleaned by now and you can relax and maybe have a nap before lunch! Please keep in touch and let me know how you are doing! Take Care 

Well it is quite unbelievable just managed to get to shower room and shower broken and only cold water at the sink. They brought me a bowl of warm water though. 

Doctor came and my scans were fine no clots in lungs or brain but they said that does not rule them out. However they have no idea what is going on but agree I am quite poorly. Apparently A&E asked for an ICU bed last night but I was not told. My daughter also told me this morning that when the doctor spoke to my husband yesterday without me they asked if I had a DNR in place. It is a bit of a shock. 

The doctor is concerned about the light situation and me not sleeping as I am exhausted. She has offered sleeping pills but I have refused perhaps I will nod off in time. She wants to treat me for everything infection, clot, asthma so antibiotics and clot thing done just awaiting I V steroids. She also wants me to stay till Monday as my oncologist will be here and she wants him to talk to me about my cancer as she points out I have been fighting it for a number of years. It sounded a bit ominous. By then though I will probably be fighting fit and he will be positive as usual. If I don't my next appointment will be March. 

My current thinking is Monday is only one extra day as I am definitely not able to go today so I should bear it. But if I am honest I am also nervous about what might be said. 

On the bright side I am meeting up with my daughter and grandchildren next Saturday in York, such a lovely place and then they are coming to us in Feb half term. 

Got to last till then and be as mobile as possible. 

Holy shit

I'm so sorry to hear all this, as if being so poorly weren't enough.....

Sleep deprivation is a form of torture, I hope you get some rest soon. It does sound as though you're stuck there until Monday. I really hope you'll be feeling better by then and it's probably important to see your Oncologist. 

You need to be well enough to see your family in York and I'll keep everything crossed for you.

Sending you a gentle hug xx

hi all wanted to spread some good news re treatments.  hope you all agree.                                                The 'killer' cells treatment by Welsh scientists that could make a huge difference in the fight against cancer           The Cardiff University team discovered a method of killing prostate, breast, lung and other cancers in lab tests      "There is no question that it's a very exciting discovery, both for advancing our basic knowledge about the immune system and for the possibility of future new medicines.      The Cardiff group hope to trial this new approach in patients towards the end of this year following further safety testing.                                                                                                                                                                                                                                                                                                                        https://www.walesonline.co.uk/news/health/cancer-treatment-cells-cardiff-university-17597074  

Thanks all.

I am quite weary but hope to sleep tonight. I am also definitely breathing better the doctor is now saying they are ruling out clots which was their biggest worry. I have just came out in a very red, sore rash on my face, chest and back which they are saying is an allergic reaction to an antibiotic I had yesterday which is strange as that is usually my go to IV anti biotic. Still waiting for the steroids. 

I think now that I will bounce back sooner rather than later but I will stay to see the consultant. I have also decided to ask if they can turn my bed round this evening so I am facing the wall not the light. 

Take care where ever you are. 

This is a horror story, Maz59. I hope you are noting everything, and will make a formal complaint as soon as you get home. That kind of treatment is unacceptable.  

Thinking of you. Don't let them into the room if you don't like the look of them.

Hi I'm pleased to read you are feeling a little better and especially that they've ruled out a clot, that at least is good news. I can't believe the shower wasn't working, I know the effort it takes, when you're feeling unwell, to get the towels, shampoo etc ready and in the shower room and then not to be able to shower is terrible! I hope you are taking notes! Especially of what they are saying to your husband and daughter but not to you. I do hope you mention this to your oncologist on Monday, I would be so angry if this happened to me!

As you say, just one more day and if you've managed to get some sleep, with your bed turned to the wall, that's great. If they haven't turned it,( I've little or no trust in them)  sleep in the bed upside down, then you will be facing the wall! Just rest today (Sunday) so you look better when you see the oncologist and hopefully he/she will send you home to recuperate to get some strength back before next weekend's family day! Take Care 

Maz I really dont know wot 2 say. There aren't words that I can possibly come up with 2 describe how I feel reading wots happening 2 u.

I can only pray that u do get effective treatment & that some sort of sense kicks into the NHS. My little grumbles seem pitiful in relation 2 ur weekend. 

All the community will b thinking of u 2nite. 

Take care hun

WB xx