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jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: My Dads diagnosis

Postby jay » Wed Sep 09, 2015 7:59 am

sorry your dad is in so much pain, some people on the forum went to hospices for pain management and they were outstanding,a long time to wait to get a nerve block, next Tuesday could you push for an earlier appointment to get it done? Take care,
love Jayne
xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: My Dads diagnosis

Postby Sueoliver » Wed Sep 09, 2015 9:13 am

My Mum was in our local hospice Easter time and I can only say they are wonderful. She was only there for 1 week and I can't praise them enough. I think she was scared but now she wouldn't hesitate to go there again.
I hope they get his pain under control.
Love Sue x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: My Dads diagnosis

Postby kittycat » Thu Sep 10, 2015 6:28 am

So sorry to hear that your Dad is in such pain, my heart goes out to you. It's so difficult to see the ones that you love so suffer as they do and every day of waiting for something to be done seems to be an age. I can imagine how you feel at the moment as I'm going through a dreadful time myself right now and I can only hope that things improve for your Dad soon.

Sue

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Thu Sep 10, 2015 7:49 am

Thank you all for your replies.It does help if you know your not on your own x

PCUK Nurse Dianne
Posts: 285
Joined: Tue Aug 14, 2012 3:29 pm

Re: My Dads diagnosis

Postby PCUK Nurse Dianne » Fri Sep 11, 2015 12:19 pm

HI Alison and other forum members,

As you know we try not to disrupt your 'flow' amongst yourselves, however it is often helpful to hear from us and what may work for you. Alison you mentioned that Dad has been offered potential care in the hospice and I wanted to explain how this may work, and this may be helpful for others to be aware of too.

Most hospices will take patients for 'respite' or 'symptom control' admissions, not just in the last weeks of life as many people believe is the role of the hospice. We are aware many patients may be quite anxious about admissions to the hospice, however we can give you some great feedback from patients and their families who have used the hospice environment for short stays and to have symptom management (ie pain, nausea) or some respite if required. The beauty of this is that the hospice environment is very different to that of a hospital, and also when patients are able to be discharged back home, you will still have access to the hospice as a resource if you need advice, guidance or if you wish to have the hospice team visit at home.

This is a great resource that is so often under used as many people are not aware of the care options. Please do feel free to be in touch with us if you wish to have a longer conversation about this as we can talk at length if you feel this would be helpful. (Support line - freecall 0808 8010707 or email: support@pancreaticcancer.org.uk).

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Sat Sep 12, 2015 8:35 am

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

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: My Dads diagnosis

Postby Sueoliver » Sat Sep 12, 2015 11:27 am

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

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Sat Sep 12, 2015 8:07 pm

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

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: My Dads diagnosis

Postby Sueoliver » Mon Sep 14, 2015 8:57 am

How is your Dad today. Has he gone to the hospice? I hope you are ok as well.
Love Sue x

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Mon Sep 14, 2015 9:55 am

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

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Dads diagnosis

Postby sandraW » Mon Sep 14, 2015 6:57 pm

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

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: My Dads diagnosis

Postby allyc1 » Tue Sep 15, 2015 7:01 am

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

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My Dads diagnosis

Postby J_T » Tue Sep 15, 2015 11:17 am

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

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: My Dads diagnosis

Postby Sueoliver » Tue Sep 15, 2015 3:25 pm

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

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: My Dads diagnosis

Postby kittycat » Wed Sep 16, 2015 7:45 am

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