General Chat

Morning girls, I think what has happened to Deanna has hit us all hard, it certainly knocked me for six. When something happens to one of our family we all feel it don't we, I feel selfish now for hiding away in my own black cloud, I was (am) so miserable and down I didn't want to post because I didn't know what to say. When this thread started I had no trouble at all in writing and helping people, now I struggle with the simplest sentence. I have been told FM does that but I am not so sure. I know the pain is driving me to distraction, these new patches don't work on me, the first lot were perfect when we got the dose right, but the rash they caused was awful.

I am also worried since I read about poor Wendy Richards with her cancer, it started with breast cancer and has come back twice. Now it is in her bones, same as mine has done, maybe it is because I am down but I have it in my head that I will end up like her.

I am going to have a word with my Macmillan nurse this morning, see if she can suggest something to help me get through the day. Surely there must be a painkiller somewhere that will work for me.
I should delete this but that is what I have done with nearly everything lately. I am angry with myself for being like this with poor Deanna laid in hospital and another dear friend not knowing from one day to the next what the day will bring.
Sorry, I am not feeling sorry for myself, it's just that I don't know where I am at or how to get out of it.

Caz xx

Caz, I think with most meds it is trial and error. Each of us has different body chemistry, thus the rash with the patches. Have you thought about a morphine pump. A friend has one, it is fitted internally. He also takes other painkillers as a boost.

I think all of us have lived in that black cloud at times. We know you are a fighter, you also need to know that it is okay for you to feel this way at times, you cannot be the strong one all of the time. Even though you would like to be.

Please do no delete, we miss you and worry even more when you are not around.

I give you permission to go easy on yourself. Let us know if the nurse has any ideas re meds.

Love and hugs

Gail

What a sad morning. Gail your post started me off crying! We are like a family aren't we. We are so lucky to have the support of one another.

Caz don't deleat, your post is what we need to get us pulled together again.

Gill pm me anytime you know that!

Incase anything happens to me or any of you, I'll say now, I do love you all :o) xx

morning all ive just poped on to see if there was any news on deanna ,like many of you this news knocked me for six ,shes been on my mind all the time since she was took bad ,she has helped me through a lot lattley and gave me strengh to cope ,even with her own worries ,and i feel so guilty ,so now deanna im sending you all my strengh thoughts and love for you to make a speedy recovery ,please hurry home we miss you xxx elaine xx

Right ladies, if Deanna was reading and answering this thread she would be the first to try and cheer us up, offer comfort and support etc. So we owe it to her not to let ourselves descend into the black despond. One thing that has happened the thread has started moving again so that must be good. For a while hardly anyone posted, we need to talk to each other as that is what keeps us going.

I feel very privileged to 'know' everyone on this thread and, as somebody has already said, we are like family. I am lucky, I don't suffer from depression, but I have friends and family (in real life) who do so I can empathise with you all and try and support you. But that is only one reason I come on this thread. The other is that you are all among the most genuine people on these boards, i know there will never be any nastiness or back biting on here and I feel comfortable with you all.

Caz, please don't hide away when you feel down (did you read that holiday account by the way?), Tell us when you are down and we can try and lift you. I hope that they find a solution to your problem as there must surely be a way of alleviating the pain that suits you. I too thought of you and guessed what you would be feeling when I saw about Wendy Richards. But I am sure each sufferer is different and what has affected her will not necessarily affect you. I can't begin to think how you feel when you are suffering so much pain my miserable lower back pain is bad enough.

Gill, it goes without saying that I am happy for you to e mail or PM me any time at all if you want to speak freely.

Mary, Gail, Elaine, Carole, sorry this has affected you all, at least we have some contact with Deanna via her lovely son and husband, my thoughts are constantly with them all.

Joyce, sorry it had to be something sad that brought you back on the board. I hope that one day you will feel up to posting again as we do miss your lovely sense of humour.

(((((hugs))))) to you all, especially Deanna, come on girl we are allw aiting for you!

Ann
Glos

After a cuppa and a few tears I came back to delete my post, too late. I have been sat since 8-15 trying to get myself together. Gail they wanted me to have a permanent line in for my bone strengthening drug but my oncologist said no because my veins are too fragile, so I don't suppose they would allow me one now.
I will see what Chris says this morning, see if there is another patch I could use or something.
I am not the fighter I was, it's too hard to keep up, I think that's why I get down so easily now.

Caz xx

As you know I don't (can't) do "there,there dear" so please don't think I am being uncaring by not sending my support to Deanna.Of course I wish her the very best recovery possible.

My pragmatic head springs immediately into position at times like this.

Having been through it all quite recently I am offering my experience to Deanna's family,for what it is worth.

When,as she surely will, she comes home, unless they have considerably better support than we did, her family will probably feel more alone than they ever have done and very frightened by the new responsibility.

What I can offer is to stay as close to my computer for those first few days or even let them hae my telephone number if they would like it.

All I wanted in the first few days of my dad's release was ten minutes of somebody's time who was prepared to talk me through the minutiae of caring for a stroke patient.

As usual Sharron very good advice.

When I was virtually dumped out of hospital after my accident, we also were not offered support. My husband looked after me for 4 months on his own and taking me to physio and docs, it nearly put him in hospital. He had to get me in and out of bed until I finally was able to get a ring over the bed to do this my self. That was for 18 month. My family meanwhile just told me to get over it. I suppose my injuries would equate to a stroke patient as right side does not work properly. And at times, when very tired, I dribble.

I should not be walking or be able to do anything, but I can and will.

What I am trying to say, I hope her family get all the help they can, as this not only takes the strain off them, but is also better for the patient. I do not know how the UK system works. I do know that there is nothing really in place in Australia unless you are on some kind of Government Benefit. Very strange I know.

The family will need support as well for their own healths sake.

Deanna, we are already planning your return.

Gail

I can't fault the carers who get the old man up and deal with his bodily functions.The provision for that here is very good.

It is really the psychological support that was lacking.He was sent home in a wheelchair with no thickener for his drinks and the first thing you want when you come home from being away for six months is a cup of tea.Of course he had one,he just had to sip it so as not to choke.

Not having been in that position before,I did not know what to expect,what he should have in the way of equipment,where to go for help,where to get things,who would do what.Nobody I knew had been in the same position,apart from his cousin and I was to pre-occupied to think of her.

I could have done with somebody who had been there talking me through what to expect.

We were promised somebody to be with us first time we set up the food pump.They did not materialise.Probably the worst thing was being left with a bag of pills including three strengths of Warfarin,yes rat poison,and not knowing what to give him.He had no medication for two days while we waited for somebody to contact us.

I did contact the surgery but,unfortunately,encountered the one officious receptionist whose job is too big for her.She fended me off very well!

Now,of course,it is a breeze,I know what I am doing even if I do spend my life bl**dy organizing things.Everything needs to be thought out in great detail,time consuming.

I am offering my support for the time of bewilderment,it is what I would have liked to have had myself.

I would have loved that for us as well, support for bewilderment. That is such a brilliant phrase.

I was too sick to really care, it took some time before I realised hubby was getting ill. I was a 24 hour a day job and he went back to his after 4 weeks. Poor soul was running on empty. Emotional support would have been wonderful. I tell him all the time how great he is. He really need someone over those 4 months to tell him he was great as well.

Gail

Never be as great as your brother KNOWS he is though eh?

How is it all going on that front anyway?

I know I will never be as smart as Brother thinks he is. Boy am I glad about that, because there is still room for compassion and all the other feelings.

Brother is still away, and left a great mess behind, which the rest of us are trying to sort through. Mind you he is still the only one allowed to touch anything. He needs to get a life away from himself he really does. And yes, he is in love with his own reflection.

Gail

One of the sites on narcissism gives advice upon how to deal with them.

It is still easier to nail a jelly to the ceiling.

Just had a major picture in my mind of nailing a man size jelly to the ceiling. I had rainbow jelly. And now I have the giggles so bad I need to run to the little house.

Gail

Sharron, well at least you cheered Gail up Lol!!!

Your offer of practical support for Deanna's family is very kind and thoughtful. You must have felt very lonely when your Dad first came home.

Ann
Glos

It is just something you can't really prepare for.There are leaflets but they don't tell you how to get his toe-nails cut,or,even more difficult,his hair.

Have you seen the forms for Attendance Allowance?Now,I am fully literate,a bit educated with English as my first language and I found it very hard. Think of the old lady or the none too bright individual having to deal with it

For reasons best known to themselves,the bank refused the Attendance Allowance one week so it was stopped and along with it the pension.I was not entitled to deal with this because it is not paid to me,my dad had to give his permission over the phone.He has had a left side stroke,he talks like a drunken budgie.So I had to put him on and he slobbered down the phone a bit and they realized that perhaps they should deal with me.

It's all a bl**dy wind up I can tell you!

Good morning all xx I say 'good' morning because we are still alive, able to some extent to take pleasure from daily happenings, hopefully... then the routine of popping pills and potions together with gallons of water to wash them down, yuk...but then without which I would not be here trying to brighten your day xx

Needless to say my thoughts are with Deanna, Allan and Tony right now along with my dearest friend Y Caz who is fighting the good fight, have not forgotten you lass xx

Not being morbid but I could say 'without this thread, we would all be dead'...without it I would have given up a very long time ago..

Some of you will know that in the past 18 months everything that could go wrong for me, has. Am sorry to tell you that hope for an operation on my Abdominal Aorta aneuryism has no materialised.. on my last visit to my consultant he apologised then handed me my discharge papers from the hospital..... at the moment I am in limbo, hence not posting for a while, but I do read our thread each day and say my prayers for you all...

What a mixed bunch we are...so many diverse challenges (not problems, I hate that word) but with strength we will win out in the end, I know..

On a lighter note, am not sure how many of you remember my tales of Toby?...pleased to say he still walks me and yes, still manages to find the dirtiest undergrowth, tosses the cushions in the air and tries desperately to bite the postie, luckily the postman has not reported us so keep your fingers crossedxxxx

My daughter has transported more of her horses up to Coventry, my granddaughter now has eight in her paddock/s, last one handed over being a beautiful shetland pony named Princess...sadly daughter's arthritis is getting worse hence having to part with them..she does see them every month so not so heartbreaking xx

I would love Deanna to be on line because firstly she would slag me off for talking too long, secondly she would try to compete with using more characters, but hey lass plenty of time to catch up when you are feeling better..just let me know and I will hide away until the air has cleared xxxxxxxx.

Right, time to trip the light fantastic..wonder what Toby has in store for me? will let you know..

Take care everyone, thanks for listening and for being a brilliant team of advisors,carers and listeners, in your own right..

Take care Y Caz, who loves ya baby xxxxx

JoyceP xxxxxxxx

I had to deal with 2 insurance companies. They each had their own doctors/specialists. The closest they sent me to was 100 miles/175 kilometres. All their paper work was difficult, even for me and had worked with this type of thing for 15 years. It was a nightmare. Husband did not have a clue where to start. I have since learned to write with my left hand. Trying to get all the c$#%&*p out of the way was difficult. They then said I must write it myself, so I did and they sent it back and said husband could do it and I could sign with a JP as witness.

I really think at times they overload with the paperwork to get you to give up.

So Joyce, do you have to find another hospital?? Why would they do this to you now.

Sharron, I shall not ever look at jelly again without getting the giggles. Thank goodness I cannot eat it or would choke trying to get it down.

Gail

Actually I should not be writing all this at the present time.I would not want Deanna's family to be reading it ,they have enough to worry about at the moment without expecting to have the same difficulties to cope with.

Sharron, forwarned is forarmed as they say. I just wish that we had been warned before I left hospital. They might find it helpful if they happen to read our thread. You know by experience NOW, it would have been so much easier for you to have been fully aware before you got your dad home.

I cannot see a problem, and to be truthful have found today a lot better talking about everything. I think it helps me cope.

Gail