A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: Need some advice if possible !

Postby Birchen » Sat Aug 02, 2014 5:39 pm

Not sure if this will be of any help but when my husband was really in pain during the night we phoned our hospice but could not get a reply so then phoned our doctors surgery who in turn put us on to the out of hours line. When we spoke to them they immediately sent a paramedic who then phoned a doctor. The doctor called an ambulance and my husband was taken directly to the hospice. Don't know what we would have done without them all and it made this dreadful time so much easier. Hope all goes ok for you both but don't be worried about phoning as that is what they are there for. take care x

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Need some advice if possible !

Postby Dcoleman » Sun Aug 10, 2014 7:52 am

There are so many questions you want to ask and I often do. But sometimes they don't have the answers I want to hear. Had a visit from the hospice and they have now put dad onto oral morphine instead of tramadol. Dad is now struggling with the stairs so we have contacted the hospice to ask for a bed downstairs. He only eats a small bowl of cereal now and nothing else apart from drinks. The only good thing at the moment is he has no pain. I hope this will continue for a while yet. I worry that I won't be there right at the end to hold his hand x

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: Need some advice if possible !

Postby brodders » Sun Aug 10, 2014 12:03 pm

My mum found the stairs difficult- she had a lovely comfy bed provided to sleep downstairs. Take care and thinking of you,
Lots of love Cate xx

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Need some advice if possible !

Postby Bee » Sun Aug 10, 2014 1:53 pm

Hi, I
I haven't posted to you before, I rarely do now but I pop in regularly but just wanted to reply.
I am sorry about your dad, such a cruel and relentless disease.
I know you are scared that you won't be there at the very end for your dad, (which hopefully is some time off) and I just wanted to say I shared exactly the same fear. Ask all the questions and use Macmillan and the hospice, they are fantastic. Ultimately your dad will pass when the time is right for him, I know that seems hard to believe but it is often the way and the hopsice staff will echo that. I lost my husband in December and was so scared I would not be with him, but he chose his moment and it was right for him. No matter what happens ultimately your dad knows you love him and that is all any of us can ask for.
I hope my rambling is vaguely helpful. Take care

Bee xx

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Need some advice if possible !

Postby Dcoleman » Tue Aug 12, 2014 9:01 pm

Thankyou Beeand cate
Today Dads bed arrived and it is lovely and I'm sure he will be very comfortable. The oral morphine that he has been given seems to have really helped his breathlessness. This was the main reason to get the bed downstairs for him. It seems to have made him more comfortable now and he isn't struggling half as much as he was. The district nurse has been out and she said his blood pressure is quite low...but that would be about right as they think he has some internal bleeding as the last blood transfusion he had done had very little if any affect. Next week dad wants to go and sort out the funeral arrangements which all seems a bit strange but if that is what he wants to do then we cannot deny him this wish. So all seems quite stable at the moment which is lovely. I hope Bee that I will be there when the time comes although I also know that I have been there right from the start of this awful disease being diagnosed and I know dad appreciates all that I do for him as well. Thank you xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Need some advice if possible !

Postby sandraW » Tue Aug 19, 2014 12:48 pm

I hope you Dad is more comfy in his new bed, and that he is as well as can be expected, we have been away for a few days so I am just catching up, take care sandrax

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Need some advice if possible !

Postby Dcoleman » Sun Aug 24, 2014 7:19 pm

So the update.....dad seems a bit brighter ( if that's what I can call it!!). The morphine has made a massive difference. He is much less breathless and he has started eating a little food. Only very small amounts though like a Couple of spoons of mash potato or a cup of soup. But anything is better than nothing. He still continues with his drinks and although he has diabetes he really enjoys having a cup of tizer ! He hasn't started to use his bed yet which I am pleased about because it means that he is still able to get up the stairs. He has now provisionally booked the funeral which I found very emotional but he feels that he needs to make sure that everything is taken care of. So all still stable for my lovely pops! X

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Need some advice if possible !

Postby sandraW » Sun Aug 24, 2014 9:11 pm

Hi,
Your Dad booking his funeral must have been hard for you but it was obviously something he felt he needed to sort out. Its good he is feeling a bit brighter, and eating a little at least, glad he enjoys his Tizer, it will give him a boost hope things improve even more for him take care sandrax

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: Need some advice if possible !

Postby Bowie » Mon Aug 25, 2014 12:23 am

Good news that your dad is feeling a little brighter and well enough to use the stairs. What an incredibly brave and selfless man he must be to go ahead and arrange his funeral.
Hope you have some more good times together.
Fiona X

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Need some advice if possible !

Postby Dcoleman » Mon Sep 15, 2014 5:37 pm

Just an update and maybe some body could tell me what might happen next. Dad is sleeping most of the time. He says if he lays in bed it is some where he feels safe. He has lost so much weight now and is really only having his fortisip drinks and his favourite tizer. Everything else he says tastes strange so he doesn't eat any thing else. We have contacted the district nurses and hopefully they will come out in the next couple of days. I'm really scared that im going to go in to see him and he has passed away. I don't want him to be on his own right at the end but how will we know when the ends near.? This has been the most cruel thing for us to see ... My lovely pops just withering away and just waiting to die how can life be so so cruel to the most amazing man x

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Need some advice if possible !

Postby rsk1974 » Mon Sep 15, 2014 7:22 pm

I'm so sorry such a tough time, I truly believe that people choose to go when they are ready. We where told everyone is different and there is no real signs, some say a bit of a chest rattle and getting frustrated, dad had this in his last 24 hours. However we got told that we would know and be able to be prepared, dad left us in the middle of the night, which I have to believe is how he wanted it.x

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Need some advice if possible !

Postby sandraW » Mon Sep 15, 2014 10:43 pm

It is so very hard going through this time, watching some one you love suffer is terrible.I hope the nurses can help, but as rsk1974 says it does seem as though people go when they are ready, my Mum lived until the day after her 96th birthday, she loved her birthdays, and left us the following day. thinking of you all take care sandrax

PCUK Nurse Dianne
Posts: 305
Joined: Tue Aug 14, 2012 3:29 pm

Re: Need some advice if possible !

Postby PCUK Nurse Dianne » Fri Sep 19, 2014 12:00 pm

I am sorry to hear this is such a difficult time, and it is so difficult to predict any changes. It sounds that the Morphine has made your father more comfortable, which is great. I wonder if you do have Macmillan nurses or hospice nurses that visit as well, this may be helpful for your father, and also emotionally supportive for you too. Often patients will have a 'roller coaster' for a few days, some days brighter than others, and as you say you now find that your father is sleeping more each day. Good that he is still able to take some nutrition. The difficult part is often asking him how he is feeling, so important at this time for patients to be able to express their thoughts, and althought this is such an emotional time, sometimes the most important thing is to sit and chat with your father. He may want to talk to you and share his thoughts, and this is an important time for you to share your feelings with him too. If you are caring for your father on your own, have you thought about some support at night with a 'night sitter' so that you are able to get some rest yourself, it is very tiring (both physically and emotionally) being a carer.

Please do feel free to be in contact if we can help at all, thinking of you during these difficult days.

Dianne
Pancreatic Cancer Specialist Nurse
Support Team

Dcoleman
Posts: 38
Joined: Wed Apr 30, 2014 10:46 pm

Re: Need some advice if possible !

Postby Dcoleman » Thu Oct 02, 2014 8:56 pm

A quick update.in the past 10 days dad has gone down hill rapidly. He is now bed bound and is sleeping even more. He says he needs the toilet more often even though he isn't eating. He doesn't seem to sleep very peacefully and is quite twitchy. The doctor came to see him today and said she feels that dad is probably nearing his last week maybe 2 with us. Which was devastating to hear. He still has no pain so he doesn't complain about anything. My mum and I are caring for him at home but the hospice are coming tomorrow and maybe we can get someone to sit with him at night. We are all physically and mentally drained now and it isn't even the toughest of times. These are with out doubt the times when you wish there was a cure for this most evil of illnesses that takes no prisoners what so ever. X x

Fifi

Re: Need some advice if possible !

Postby Fifi » Thu Oct 02, 2014 10:07 pm

Devastating to read.

I don't know if pleased is the right word, but pleased he has no pain.

My thoughts are with you and your dad.

Leila xx