Dear Carol

I'm so sorry for what you and Norman are going through and the experience you had with his nurse. I remember having a similar conversation when my mum was re-admitted to the oncology ward. I really can't understand how a nurse can be way, it is so shocking. I realise now how lucky I was as I stayed with my mum for the week she stayed in hospital and was able to help her shower etc and not leave her side. It's so unfair for what you have had to experience.

I'm sorry for what you've been told about Norman's cancer spreading and I wish you strength in the next coming months.

Thinking of you all.

Nicola x

Hi Carol. I Your postings were such a help to me when I needed to find strength, and I'm so very sorry for what you're now going through. It's genuinely brought me to tears reading your latest updates.

And you don't deserve to be treated so shabbily by nurses like that, who have zero empathy.

I do think sometimes that somewhere along the line, cancer patients and their families have ceased being seen as human beings with thoughts, feelings and a basic right to dignity.

I remember Dad pushing back against the idea of any help at home, and having to say to him "just say yes to everything that's offered and we can then get you home."

I'm rambling, sorry. All I really want to say is that I'm thinking of you and Norman. You're a very strong and remarkable person and I hope you have lots of help and support around you. Take care x 

The fish pie fought back all night, why do we disregard our own Commensense and think this time I'll be OK.  So I kept thinking about it all, how will we cope, who will be coming to help, will Norman accept the inevitable and behave himself, who knows he still has that fight in him to be independent.  The care team rang at 9am to discuss his needs, they have no idea about how an amputee can get about, have you a shower she asks, yes but he can't use it, why not, because a one legged man can't hop into a shower, can't he wear his leg, no it would get soaking wet, well according to the hospital he can get from his bed to his chair, yes he can because they are an inch apart.  Then it turns out it has to go to tender, if we're lucky we may get a reply.  Five years I've done this on my own, wasted no one's time or any money and then we're at the mercy of the system. What am I supposed to do, pay for it all ourselves so we have help.  I've not heard from Norman today and I'm leaving well alone until he calls.  Faye rang him last night, I'm fine he tells her, everything is OK don't worry about me.  Does he understand that we know how ill he is she asks, Faye he's on another planet he still thinks you're children and should be kept happy.  OK Mum she says, have we been given any indication of how long, no we haven't.  I'm sorry that a lot of you have experienced the bad side of nursing, but I have seen the good side as well and it's the same in any form of life, good and bad people.  Others are telling me to complain but seriously I think I have enough to deal with.  You're messages of support are amazing and thank you so much for taking the time to write to me.  Lunchtime, it's a bowl of cereal with yoghurt and two buscoppan.

This husband of mine will be the death of me. The hospital just rang and said he's coming home today because everyone he spoke to he told them he needed no help again  I felt sick to my stomach and told the staff nurse that nothing is in place as 24 hours ago he agreed with the plan put in place.  She has spoken to him again as she doesn't consider it a safe discharge and he now says they changed the plan   He is now being moved to another hospital it doesn't matter as long as he is cared for as I can't visit    This is not going to be easy  xx

Dear carol ,I think your allowed 15 thousand each before you have to pay,then it varies depending on money..      we usto have grab rails in shower and a plastic stool don't know if that's any help, and a step with hand rail outside shower . Didn't put shower on till Brenda was in and sat made sure water was away from her till warm..

There's plenty of things you can get to help and make things easier for you both.

Hope you can get things moving and Norman agrees with you more often . take care keep fighting and STAY STRONG ..

Thinking of you and Norman .

Love Billy xxxx

Hi Billy and everyone here supporting me, things have got worse.  There is no step down bed anywhere in hospital so he now has to go into a nursing home, they have just rang me and said there is a bed in a home five minutes away so keeping fingers crossed.  Norman has been told this and has agreed and apparently it could be weeks before care is in place, so we have no choice and to be frank, Faye, Lisa and I think this is the safest way forward.  I've not spoken to Norman since I saw him on Monday and I'm a little afraid that he may give me some fruity language when we speak.  I may cheat and ask one of my daughters to call and see how the land lies, he will not be awful to them but you know what they say about the one closest to you bearing the brunt.  He actually rang Luke last night and told him he could not walk and was feeling really unwell, so it seems that we all have his measure but he won't admit it to those in charge.  The consultant has to sign off his care package and it seems that is now done and obviously he does need nursing care as that is where he will be going.  I'm at the point where I,'ve had so many conversations with people I'm not really sure what is real and what is not, as my dreams seem to be muddled into the truth and it's very confusing.  So writing it down is better as I can keep a record of what has been said.  Take care of yourselves all of you, love Carol x. Oh I forgot, I went to see John and Chris and they caught covid at Pauline's memorial service, so we froze to death outside whilst we chatted about Norman! 

Dear carol , just trying to think what a step down bed is , Brenda's bed is extra low, with her being 4 ft- 10 ,and it rises up completely and legs up and recliner, she can sit on edge and feet on floor or rise up a good 8 ins its a hire one all arranged for us second time around, first bed was to high and she needed hoist to get on, people are supposed to arrange things for you,we got hoist, bed,wheeled commode and other things . within days,dam this covid for you.

Glad Norman is moving nearer but rotten you can't visit.

Thinking of you sending our love to you both .

Love Billy xxxx

Hi Billy, it's a figure of speech so it means going from a medical ward bed to one that only needs nursing care.  I've just spoken to him, he is in a side ward as others have tested positive for covid but he hasn't.  There is a bed in a nursing home so we need to hope they will accept Norman.  But at least it gave your brain a puzzle to solve!  Xx

Dear carol. . no wonder I've a headache, enough puzzles sorting Brenda out ,.     (((;ꏿ_ꏿ;)))

Hope you can get thing's sorted and less musical beds .

Thinking of you dear carol  , hope you are looking after yourself .     

.Love Billy xxxx

Dear all, the NHS have a lot to answer  for, Norman now has covid, despite no visiting and being in a side room he has it, two years I've kept him safe, it's taken them two weeks to turn him into a wreck.  Tuesday gone, in my mind having seen a senior doctor we were all set to put it all in place, but no, they then ask Norman today what he wants, millions of questions, do you want this, do you want that and he is obviously very muddled and he said no to certain things.  we were waiting for a nursing home bed, but no, they meet me at the ward doors when I took clean clothes in and tell me he will be home Tuesday next week, with a care package but no grab rails, no bidet, no raised toilet seats because apparently my sick husband said he didn't want them!  I'm so bloody mad and asked why when we had a meeting it all changed, because  he is the patient.  Do you know what I had to do, call Norman on his phone from six feet away whilst the staff nurse stood next to him and bellow down the phone to just say yes to everything, even if they asked him about a wheelchair, we've got two already but if they ask you I said just say yes.  So I arrive home and despite everyone having my mobile, continuing health care had left a message on my house phone, they must go home early because no one called me back.  Then a phone call from Dr W, who I thought was calling about what was happening and relayed all my rants at him until it suddenly dawned on me he was the blood consultant, I'd actually rang and cancelled this phone call as Norman wasnt here, so more resources wasted.  I had also spent ages cancelling our DWP care allowance as he wasn't here and was going into a nursing home, I now have to call them back and alter it all again.  I wish to God we had kept him safe at home and just let him fade away peacefully in his own bed.  If I don't have a heart attack it will be a miracle.  Please keep us in your thoughts and prayers.  Love Carol x