Hello night owls and the rest

Hi folks 

At 10.30 last night I stood my ground with a nurse and said that either she let me turn the bed or I went home and she could explain why to the other staff and doctors. I had explained it was agreed and another patient backed me but she just shrugged her shoulders at me and walked off saying no one had told her. I was livid as I was just exhausted. She grudgingly turned the bed. 

But good news I went out like a light and have just woken with extremely red sore eyes . I am going to try to get off again. 

Thanks my friends for your support it has kept me going in this world where stupid things keep happening and those we have to trust just don't seem to want to help at times. 

Let us all encounter more of the good and less of the bad as we travel this road. 

Hi

I am so sorry I haven’t read this thread sooner. I kind of skipped over it as I haven’t been awake in the wee small hours for a while. What an absolute horror story. Are you sure you’re not, in fact, in hospital in downtown Mogadishu? Or Damascus? Funny how the shower doesn’t work, the hot water is bust, the cleaners are nowhere to be seen but the security light just keeps on shining like a beacon. 

I really don’t know what else to say other than get the hell out of there  

lots of love and the biggest hug I can muster 

xxx

Hi Maz, So glad to see you stood your ground with these uncaring nurses! I think a little work might just kill them! I'm so pleased you at last managed to get some shut eye and hope you fell asleep again after your post. Just keep your head down for one more day and I agree with Daloni, then "get yourself out of there" before they do some real damage! Sleep tight!

 Hello everyone contributing to this thread, it saddens me to read that anyone in our little fraternity should be on the receiving end of such unsympathetic treatment. I have myself in the past had similar experiences and my husband made the decision that he would take his complaint to the director of our local hospital, we subsequently received a written and personal apology from said director. After reading your testimony I’m glad we took it all the way and hope we improved conditions for those that followed, but I appreciate that it is an incredibly draining experience just being ill without having to take on an entire organisation. I hope you make a speedy recovery and return to the comfort of your own home and re boot yourself to face whatever challenges you may have moving forward. I think if you are a nurse and can no longer empathise with your patients it’s time to get another job, I know from personal experience that a good nurse is a life saver and only this  week I received a loving embrace and genuine tears from someone who I consider a friend, so it doesn’t have to be this way.

Thank you my dear friends I think only you can empathize with what I am feeling and experiencing. 

I unfortunately had another 2 episodes of unconsciousness last night Andrew and my frustration at just not being able to get it across to them that inflicting great pain is in my case pointless as I can feel it I can just not respond in any way to let them know. Less would definitely be more in this case. 

After being pressure pointed and nipped I had a completed melt down.  Not that it did me any good and I am now probably branded a trouble maker. I did get to speak to a doctor and emotionally told her about my frustration and the lingering pain this is causing. She was defensive of the nurses and quite honestly I am not bothered all I want is for them to stop inflicting the pain and to use my legs and feet for bloods, blood pressure,  etc as recorded and not my arms as they are recovering from surgery and nerve damage and have lymphoedema I usually manage to keep under control well. 

I have begged for 1 paracetamol for hours now and will ring my husband and ask him to bring some now it is a decent hour but literally one will be enough if I can get in sorted before the pain escalates if not due to my allergies to drugs especially pain killers I will struggle. 

The other communicative patient in the bay cannot believe what is going on but of course has her own care to think about. 

I am not saying the care is bad I just feel that I am not asking much and it is frustrating. From their point of view I know they have more than me to see to and there needs are probably greater than mine. In my work however I found if you sort the little easy issues you then have more time for other things.

I just seem to be apologising and feeling inadequate when what I want to do is tell them exactly what I think of them hurting me and go home. However I know I am still really not well (although the doctor last night is probably now going to suggest everything those who know me family and chemo nurses and that happened in A&E where they needed to see my husband about a DNR and ask for an ICU bed is actually panic attacks). I also need to see my consultant on Monday. Why do we have to be so vulnerable. 

Sorry to keep moaning and for being so pre occupied with me at the moment. 

Paracetamol on its way. 

Dearest maz

i feel so upset for you ,can you write ,would it be easier to communicate via written words ,or are your arms and hands not working 

perhaps a print out organised by your husband to explain your position 

this is such a shittyposition to be in and i can only imagine and empathise ,bring on the paracetamol big guns !!!

you are entitled to moan and if not here ,where ?

where are you in the country ,miserable grey day here in essex ,hope the sun is going to shine on you today

hoping for a better day for you and a quick and positive meeting with oncologist tomorrow

positive thoughts

love and virtual hugs

janet

xxxxxxx

I also think you should have paracetamol on you at all times ,which you know ,so you don t have to wait for the nurses,just keep them hidden or they will be confiscated!!!!

Dear Maz

Angry and upset for you. It's enough that we have to deal with this disease and an uncertain future: it's not our fault that we need care, that there are not enough resources. 

The health service is there to ease our pain, not add to it. If care falls short we should say so otherwise how will it get any better?

Take care, I hope you feel better and get home soon

X

Well I am surely the most hated person on the ward today. Although one nurse was clearly pleased I stood up to another one who was trying to bully me into having bloods taken from my arm instead of my foot as she knew better than the surgeon, oncologist and lymphoedema doctor.  Then they found out I didn't need the bloods anyway. But for my sins it looks like I will be chasing getting this bed turned around tonight as one has already asked why I don't just swap the pillow round. As l am unable to lie flat that is not a option or I would have done that the first night I need the back to raise also lying flat on the bed under the light will be even worse light wise. It takes less than 1 minute to do. If I find the brake I will do it myself. 

Good news is the steroids seem to be working or the anti biotics and my chest is much easier and my breathing better. So tomorrow should not be a problem. I reckon the staff will have a party once I am gone. 

I hate all this though as I do not think I am being at all unreasonable but they make you feel that you are. 

Thanks so much again to you all, these posts are keeping me sane.  

Hi ,

I've been following the thread but not saying much as everyone else was already saying it all.  The way that you have been treated is disgusting regardless of staffing levels.  You should be able to rely on getting the correct treatment especially as the consequences for you are so significant,  Just remind them that if they get it wrong they will be enjoying your company for even longer!

The fuss about which way the bed is facing is ridiculous, they must have had regular complains regarding the light so if they don't want to turn the bed around then they should have resolved the issue previously.

Perhaps you should get a badge or Tee shirt made up saying "Caution, I make formal complaints" and start making a note of the names of the staff.  I bet they would behave themselves then.

I hope that you don't get to read this until you are at home tomorrow as I would prefer it if you were getting a good nights sleep now and too busy being discharged tomorrow to read any posts but if you do then I'm sending love and a very gentle hug,

Gragon x