Hi Pauline,

I hope that all is okay – thinking of you. X

Hi, thanks for all your kind messages.  I have just come out of hospital for the second time, having spent 5 of the last 6 weeks there.  On the day I was supposed to leave a patient on our 4 bedded bay got a terrible vomiting and diarrheoa virus and the rest of us werent allowed to leave the bay for 18 hours.  Using the same toilet etc with our door shut to us and incomers.  I was sent home the next day and quickle discovered I had the virus too..

It has been a bit traumatic as the different antibiotics given got stronger and now my legs are numb and I am unable to function or eat.  My whole body shakes continuously too.  Am seeing hospice nurse on Monday but I feel that things are quickly going downhill for me now.    I have been given a great deal of morohinein all its forms, slow release, Oromorph etc etc which keeps me asleep the majority of time.

Is this howit is supposed to be - I feel so confused!I

Hi Pauline

Hope that the new medication does the trick  - mind you after having that bug you insides are probably all scewwiff anyway.

You are such a lovely inspiring lady and always so helpful with others on here that I just wanted to add my best wishes and hope they get you sorted out soon.

Hope the new medications do the trick, Pauline, I am so relieved that the nurse has reassured you a bit and is just on the end of the phone - make sure you do phone her if you need help!  We are always here for you too, as you always are for others. 

God bless, hope you can manage a bit of a rest now.

Love Hazel xxx

Hi Pauline have been reading a bit of this thread now and then and think your such a strong woman. Hope these new medications do the trick. Take care of your self -Diane xx

Hi Pauline, 

So glad to read you've had some reassurance from the hospice nurse. I've really built up a good relationship with mine. You are right, I did spend time in the hospice getting my pain medication sorted - two weeks in fact! I'm on a drug called Ketamine (people always associate it with vets and horses.) I'm also on Fentinyl patches (62mcg/HR)  I also take oromorph to help with any breakthrough pain amd I'm lucky, like you, that my nurse is only a phone call away and my medication can be tweaked to suit my needs. 

I'm afraid I can't help solve your constipation problems as I have a Stoma amd touch wood, it is functioning normally, unlike my bladder which is playing up at the moment! (Retention) 

Hopefully the link Jane has suggested will be of help? Plus asking the nurses? 

I saw my consultant yesterday and we are still tweaking my medication so I can a function with less drowsiness, but sadly my prognosis was not good news. Latest scans show much disease progression amd we're looking at 'timing' about going into the hospice. Meanwhile, I'm still carrying on, enjoying this spring sunshine amd making the best of every minute. 

Stay strong Pauline, I'm thinking of you amd sending lots of love, Jo xx

I think the moderators have blocked the drug name, sorry if I've contravened forum regs. x

Hi Jo

Sorry to hear your latest news.

We haven't blocked the drug name but our automatic swearword filter may have got confused!

If you get a moment you could email the drug name via the Contact A Moderator button and I could post it for you.

Sending warm wishes your way,

Jane 

Hi Jo you seem like such a strong woman and with all you have been through you still have a smile on your face. That honestly makes me bubble up because it's so lovely to read your comments  you have such a positive out look and like I said you keep on smiling and enjoying the sunshine. Take care of your self and your in my thoughts -Diane xx

Hello Jo,

I am so sorry to hear your new prognosis, you are always so caring of others yet you have so much to contend with yourself.  I hope that you can continue to enjoy the sunshine for a long time to come and your meds will keep you comfortable.  Thinking of you and sending my love, take care.

Hazel xx

Afternoon Pauline, how are you doing, darling?  I hope all the meds are working and giving you some respite,  please take care  - sending love and thinking of you as ever. 

Hazel xx

Hi Pauline, I'm so sorry for all that you're going through. I know you are having a really rough time of it and living alone certainly adds to the challenges you face. Just know that all of us here on the forum are keeping you in our prayers and certainly wish you some peace, now that you have some meds to help out somewhat. Try to be kind to yourself in as much as that is possible and arap yourself in the love and caring that we send to you every day.

Sending hugs

Lorraine 

Hi Jo, your courage is an inspiration to all of us, but I'm sure there are many days when you're not feeling as brave as it appears. Many of us here know the struggles you face each and every day as many of us are on the same road, albeit at different levels. I think you were one of the first forum members to respond to me when I first joined this forum and your warm welcome meant more that you will ever know. Be kind and gentle to yourself and I hope those around you will be also. Many of us here have come to know you, not in person of course, but certainly from our conversations on here. Just know that you are in our thoughts and our prayers.

Take care my friend and sending you love and hugs.

Lorraine

Hi Jo, your courage is an inspiration to all of us, but I'm sure there are many days when you're not feeling as brave as it appears. Many of us here know the struggles you face each and every day as many of us are on the same road, albeit at different levels. I think you were one of the first forum members to respond to me when I first joined this forum and your warm welcome meant more that you will ever know. Be kind and gentle to yourself and I hope those around you will be also. Many of us here have come to know you, not in person of course, but certainly from our conversations on here. Just know that you are in our thoughts and our prayers.

Take care my friend and sending you love and hugs.

Lorraine

Hi, all, well I am coping a bit better pain-wise at the moment but still have body tremors and incredible weakness in my legs.  Does anyone know if this is a normal occurance. I did spend 6 weeks in hospital, hardly moving because of so much medication,  I wasn't eating and my blood sugar (I have type 11 diabetes) went quite low for me,  4 - 5.  My hospice nurse said the tremors can sometimes be caused by diabetes.  The weakness is something I don't know if I can get rid of by trying to walk a bit, but I am scared of falling, something I have done a few times and then cant get up. I have lost 4 stone now and thought I would be able to cope better, having been quite overweight before.

Thanks for reading all this waffle but I trust your ooinions,. Thank you. x

Hi Pauline

You are one amazing lady and Iam pleased that the medication is helping with your pain.  Really cannot answer question as to whether the tremors are normal or not as no medical knowledge but I would imagine after spending so long confined to a hospital bed it would be natural to feel extremely weak.  Have  you spoken to your hospice nurse about your concerns. One thing I do know about Type 2 Diabetes (my Mum has it) is that nerve endings can be extremely sensitive and when you lose weight sometimes any medication you may take needs adjustment.  When my hubby got really weak he got wobbly and needed to hold on to move around indoors, used a stick outside (though it took a friend to persuade him!) and would have coped a little better if he had used a frame (with seat for resting) to help support himself.  I am sure you are still recovering from the extended hospital stay and virus but hope  you will see little improvements day to day.  Sending hugs and you can waffe all you like - we all do at times  ha ha.  Jules xx

Hello Pauline, 

I am so pleased that the new meds are helping with the pain.  As Jules said, you are bound to have some muscle weakness after your long stay in bed in hospital, added to which you have not been able to eat properly.  Please don't be cross with me but I'm going to suggest that you ask the nurse if you could stay at the hospice for a while until you are safe on your feet - they may have a physio there who could help get you moving again. I don't know how hospices work, but I can't bear the thought of you being on your own and falling over when you have been so brave all this time.   Maybe Jo (meerkat) could advise on what the hospice can do?  

Please take care, Pauline, you are always in my thoughts.

Love, Hazel xxx

.  

Hi Pauline,

We havent spoken for a while but I have been reading this thread and like the others think you are a very brave lady.

I think Hazels Idea is a good one. My mother went in a couple of times to a local hospice and they were absolutely briliant. They sorted out her pain care where the hospital couldnt. She was a bit reluctant to go in the first time as I feel she was worried she might not get back out. But hopsice's do let people in for short time care to sort out pain or to help with mobility problems. Please do ask your hospice nurse.

Hope you dont mind me writing this but like Hazel feel you should not be on your own until your feeling more mobile. Best wishes and kind thoughts being sent to you by first class post ha ha, Brian

Hello Pauline,

How are things with you now sweetheart?  Sending my love and hugs and keeping you in my thoughts as ever.

Hazel xxx

Hi, Hazel (and everyone else)  so sorry I havent been on here for a while.  The hospice nurse and doctor ahave decided to take me in when they have a bed to help with my pain relief.   They have said that I may just stay in so I suppose I have to. Accept what is now happening. I am pretty frightened about al this but I am not good at just waiting for what the next day may throw at me because, unless I am drugged with morphine, then I cannot get through the day.  I know all this sounds depressing, but for me it is just accepting the inevitable.  I hope to be on here for a while yet so will let you know what is happening.  Our hospice only has 8 beds so I have to wait for one to become available.  Love to you all.  x

Hi  Pauline, I know this is a really difficult time for you. I wish there was something I could say to comfort you, but I know under the circumstances, the reality is there that all of us will face one day, some of us sooner rather than later. My heart goes out to you. I pray that the days ahead for you will be peaceful and that your pain will be under control. Just know that all your forum buddies are out here wrapping you in our virtual arms and holding you close. Whenever you feel up to it, come on here and gather strength from us here to help you through this next chapter in your journey.

Sending you hugs and prayers.

Lorraine  

Hi Pauline I'm sure I speak for everyone when I say all I want to do is make you better and free of pain. The nurses and doctors must realise you need to be taken in and see how things go. I really hope the pain can shift and you can relax. I honestly can't imagine what your going through but I hope you know I'm here for you and so is everyone else. If I could swap bodies with you for a little while so you could even feel better I would without thinking. It upsets me that your frightened but your such a strong woman and I have no doubt about that. Your in my thoughts dear. Take care Pauline -Diane xx

Pauline big hugs sent to you.   I hope they sort your pain relief out soon.

River xx

Darling, I am so sad and upset for you, knowing that you are frightened of what is happening, but I think you will be much more comfortable and safe in the hospice.  I hope a bed is available soon and that you will only be in for a while.  I know that you are in a very dark place at the moment, dear Pauline, but be assured that I am with you in thought like all these other ladies on here, and hope you can feel our love coming to you.  God bless.  

Hazel xxx