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Thank you Dianne that's very comforting to know. He is such a proud man so that's why it's difficult for him to accept any kind of help. I hope when he goes he may have the opportunity to speak to other people like himself too x

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Hi Alison,

Hope your Dad is feeling a little better today. This disease has so many twists and turns. My Mum had a stent within a stent procedure and it worked well for a while ! As I said the hospice is a truly wonderful place but I suppose it is hard thinking about it. Once you are there though you will see how good it is. I know myself I was very stressed when my Mum had to go in and I became ill with shingles! Looking back it was great and I didn't need to be stressed! Please look after yourself as well even though I know how hard that is. It has been 16 months since my Mum's diagnosis and probably the longest time of my life!

Take Care ,

love Sue xxx

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Thanks Sue. It has being the longest few months for us too. It's all I think about,I don't sleep and when I do nod off its the first thing I think off! It's good to talk to other people that know what we are going through though x

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Hi Sue. No he is still in hospital awaiting a nerve block tomorrow. I just really hope it works. The Hospice is for after that, although as he isn't as confused now he is more reluctant not to go! We will have to wait and see. X

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Hi Alison,

Try and reassure your Dad, I think we all think you only go to the hospice to die, but that is not the case, and it is such a peaceful environment, so different from the hospital. Even though my husband did die there, we were left alone to do as we wished, knowing there were trained staff if we did need any help. Could you not get him to agree for you the families sake, play any card you can to persuade him. I hope he will agree, take care love sandra xx

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We had the most upseting day ever yesterday with thanks to the most blunt and cold Dr, she managed to smash my dads and our world with a few words and she wasn't very diplomatic!. She asked about his end of life and had he thought about it! When we said we didn't want to talk about it in a ward of 4 Beds, she just continued! I had to walk out very upset and my dad was very upset too. We have always thought their were treatment options,? She said really not now!Depends on the nerve block today, see if he can build up again. It's truly awful and I'm devastated

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that is disgraceful Alison! Be sure to make a formal complaint when you feel up to it. We had a similar situation with a Macmillan nurse - not our usual one - but we were at home at least. You are quite right, those sorts of conversations should be had in a private environment. I feel angry for you.


Much love

Julia

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Hi Alison,

I really feel for you there are times and places for this sort of conversation. Unfortunately not all Dr's are understanding. I had a similar experience with my Mum but it was in a private room. I was also shocked and upset! My Mum spoke to me about it and said that she is old so she wouldn't want to be resuscitated anyway. I never thought she was old and I didn't realise she had already thought about it!

Have they managed to do the nerve block? I hope so! Just be there for your Dad and carry on supporting it's all we can do!

I really do understand how you feel. Take care of yourself.

Love Sue x

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Hif Alison, I know exactly how you feel because pretty much the same thing happened to us on Saturday. Since then Roger is withdrawn and says very little - he doesn't want visitors either. I know we are aware of the outcome of all this but there are ways and means of being told and in a ward of 4 (just as we are) is not the way. Please take care. I know it is an absolutely devastating time for you and please ask the moderator for my email if you want. Hopefully by now your Dads nerve block will be in place and he will feel more comfortable. Take care, try to stay strong (I know it's so hard) but I'm sure everyone on here is thinking of you at the dreadful time.


Sue

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Thank you everyone for your messages. My dad was very withdrawn yesterday, and had actually asked to be moved to a side room for privacy. The nerve block went ahead and bless him he had to lie on his stomach for 4 hours after which was really difficult for him. I spoke to his palliative nurse yesterday and explained what had happened the day before, just see what today brings. I will definitely be complaining though!

Thanks again

Alison

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Hi all. Thank you all for replying. My dads nerve block seems to have worked. He has a lot less pain and is comfortable, he just has a bit of pain in his right shoulder blade? Maybe the way he was laid? He has been constipated maybe the medication? Thanks so much for replying its a big help to hear from other people. He is still quite withdrawn but what can I expect after the Dr last week, I have written a complaint about the way she addressed it so see what happens!

Alison

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Hi Alison, so glad your Dad's pain is now better controlled at long last. Everything seems to take an age when you need it quickly. I can understand his mood being low, my Roger is pretty much the same and doesn't seem to be getting any better. Hope you have a better week. Take care.


Sue

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Hi Alison,

I am glad the nerve block seems to be working that must bring some relief. I don't blame you for writing a complaint although I think a majority of these Dr's need training in bedside manners!

Stay strong.

Love Sue xxx

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My dad has being suffering with severe constipation after the district nurse coming out 3 times to do enemas nothing seems to be working and he is in great discomfort,feeling sick also.He just seems to have one thing after another and its so unfair

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  • 2 weeks later...

My dad has being admitted to the Hospice on Tues as his pain was too much. It's right below his right shoulder blade and towards his spine. He has had it weeks but its got more severe,the Drs said its muscular and have just prescribed voltarol gel but its never touched it! The Hospice have arranged an xray tomorrow to see what it is?.He has really deteriorated and I asked the palliative nurse how long he had left,I kept putting it off asking but we really need to know, she said short months, so I presume about 3 if we are lucky! The main thing worrying my dad is will he suffer at the end, he has suffered since he was first diagnosed last November, he has had nothing but pain. It's so cruel, and I cannot think straight I go to bed thinking about him, cannot sleep and wake up thinking about him. Wish there was light at the end of the tunnel, but we know there isn't

Alison

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Hi Alison,


Sorry to read about your Dad. It shocked me to read the GP's have given him Voltarol for pain, the only words that come to mind for that are swear words, so disgusting.

They should hopefully tell you the results of the xray straight away, I really hope it isn't anything bad.

While he is in the hospice, hopefully they can get his medications correct, and sort out his pain. Hopefully they can keep that balanced, and if his pain increases, they can just increase it to cope with it.

If they can get this sorted for him now, it might give your Dad the confidence he needs that when the time does come, the pain will be made comfortable and he won't suffer.

What are the staff like? Are they caring and trying to help?


Leila xx

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Thanks Leila


The staff are absolutely brilliant, he does seem quite happy there but he still wants to go home until the end, I know its going to be hard for us all but its what he wants. I just feel in a blur all the time and can't concentrate on anything.

Alison x

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Hi Alison


I have just been reading through your recent posts about your lovely dad and the pain in his shoulder blade. I have suffered from that type of pain from the start. My specialist nurse has told me this is typical Pancreatic pain, it can be on right, radiates up the spine and into shoulder blades and can be a sign of inflammation.


Just thought I would mention it. I use Matrifen patches and top up with Oramorph solution up to hourly as required.


I hope your dad gets some relief, for me it was excruciating.


Marie X


Marie X

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Thank you Marie for your reply.

It sounds very similar to my dads pain, they are awaiting xray results and are treating for a chest infection too. I will bear what you said in mind and let them know.


Thank you


Alison x

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Marie, I wanted to ask about the patches you have for the back pain? Do you have other medication besides that? My dad is on slow release oxycodene twice daily, just thought I would check before mentioning to the Dr and hope you are feeling ok xx


Alison

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Hi Alison,


Sorry for interrupting but my Dad was on Oxycodone. He had plenty of other medicafions as well. Loperamide for diarrhoea, codine fir diarrhoea. Pragablin for sciatica. Paracetamol for pain. Dexamethasone for weight gain and liver pain. Rifaximin for Small Bacterial Overgrowth. Domperidone for sickness. Fragmin injections to prevent blood clots.

Oxycodone is good for pain relief. Dad did have the liquid oxycodone for a while, and results were pretty istant. He did move on to the slow release patches, and I believed these worked well also.


Leila xx

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