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

Dearest Pauline, 

You are certainly not moaning so stop that thought now! I can only echo the concern that the others have posted. I'm so sorry you're alone, but glad your family are supporting you with food. 

I've not been on the forum lately, but still think about everyone each day, and their daily struggles! 

Pauline, you are such a strong, inspirational woman. I'm sending lots of love and massive hugs through the airwaves. Keep posting sweetheart and let us know how you're doing. 

Take care, much love, Jo xxx

What helps?  I suffer terrible constipation which hurts so much.  Whilst in hospital they gave me 6 enemas, none of which worked, with senakot, laxeido etc. The pain makes me sick.How is your pain, Jo, I think you spent some time in a hospice getting control of it, didnt you?  I shall ask the nurse and really hope she has some answers.  x

Hi Pauline4

We have some information here on constipation which may be helpful to you.

Do post in our Ask The Nurses section too if you would like our team to give you any advice at any time.

Thinking of you,

Best wishes

Jane

So sorry for your pain, Pauline, I only hope Jo or the nurse have an answer for you.

God bless, thinking of you all the time. 

Hazel xxx

Nurse just left, so helpful.  Gave me a list of medication which she is dropping off at doctors for me.  Starting from scratch, but with some extras like steroids for a couple of weeks (to help with eating), and advice on lots of other things. feel a bit more confident nowshe said the body tremors were probably a nerve that is being squashed and may or may not right itself.. I will see her next Tuesday for an update but she is on the end of a phone anyway..  

Thank you all for your kindness, advice and for just being there.    I really appreciateit. xI

Hi Pauline

Really relieved to read your latest post and so pleased the Nurse has been and arranged new medication for you.  My Dad suffered horrendously with constipation during his cancer illness (hubby not quite so bad).  All I can say is they were both told not to force it (had they had the energy!!) and luckily eventually found the right balance with medication and an increase in liquids and fresh fruit (taken as smoothies which also helped with eating problems).  Hubby was put on steroids several times to help with appetite so hope these  help you too.  Sending big hugs and know all your forum buddies are thinking of you, just as I am.  Jules xx

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 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

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