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 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, 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

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