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PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: Brother with inoperable pancreatic cancer

Postby PCUK Nurse Dianne » Fri Jul 10, 2015 5:34 pm

Dear all,

Firstly Bryansie, I am sorry to hear of your difficult time and your brother's diagnosis. As we so frequently see the forum family are very supportive to you. As I see there are several posts about the DNR I thought it might be helpful to explain this further and I hope this is easy to understand and does not offend any one, not my intention. I will endeavour to explain in a manner that is easy to understand without hurting any feelings.

We certainly do understand the topic of 'DNR forms' can come across as a very 'devastating and difficult question' and I should say very difficult for any hospital staff to approach too. The reason that this is asked of patients, is that they should have the opportunity to express their wishes very similarly to any treatment options, but ideally this question should be asked when there are family or loved ones in the room to support the patient and ask questions rather than leave the patient with no support at such a vulnerable time.

The reason that this question is asked is for purposes of patient comfort, dignity and quality of life. I will explain what the normal event of a patient passing away in a hospital situation and this may help to understand why this is considered.

In the situation that a patient passes away in a hospital, if there is not a DNR form signed, this means that the patient has to have 'active resuscitation' until such time that a medical professional deems the resuscitation process unsuccessful - in many cases this may be 20-30 minutes, depending upon the individual circumstances. This actually will involve the hospital 'resuscitation team' (several members ie doctors and nurses) attending after an emergency 'cardiac arrest call' is made. This will also involve the patient having CPR (cardiopulmonary resuscitation - chest compressions and airway management) and first line cardiac medications injected for a period of time until it is deemed that the patient is not responding to this active treatment.

In some instances hospital resuscitation is successful, but this depends greatly on the patient and their history (ie what necessitated their admission to hospital in the first instance), many other factors including whether the event was witnessed or patient found to be in a state of 'cardiac arrest' some time after the event. In the less common situation that the patient is successfully resuscitated this would entail a transfer to an intensive care or cardiac care unit for expert management, and this may include insertion of invasive lines, inserting a breathing tube and 'life support management', which is not a pleasant scenario for any patient or certainly family to be placed in.

In circumstances where a patient with a cancer diagnosis has been asked to sign a DNR form this should be discussed so that the patient and their family understand exactly what this means. This would require an explanation about effects of prolonged resuscitation attempts, management afterwards and all that this involves. This conversation should also highlight and reassure patients that they are not being forgotten however their treatment revolves around care, dignity and comfort. All patients and family do have the right to question this decision and all potential outcomes should be discussed. Many patients (both those with cancer and those without) may have strong feelings about dying and being comfortable and at peace at this time. The process of resuscitation is not a peaceful process and can result in complications such a fractured ribs (especially if the patient has had treatments that have affected bone strength - chemotherapy), infections from the line insertion and ongoing complications to name a few.

We do understand how upsetting this can be for both patients and families, and in some instances patients may already have thought about this themselves, although of course they may not have shared their thoughts. From a consent perspective it is the patient's role to consent, unless the situation occurs that the patient is unable to consent from perspective of 'mental capacity' and this becomes the role of the 'next of kin'.

Please do feel free to respond and if any one does wish to discuss further certainly we can do this via the support line by email or phone if that is an option for any of you to pursue.
I do hope this helps with understanding and as I suggested not meant in a manner to upset anyone.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK

Fifi

Re: Brother with inoperable pancreatic cancer

Postby Fifi » Fri Jul 10, 2015 6:14 pm

Hi Dianne,

Although upsetting because of my experience, I am pleased that you have explained this. It was never explained to me. I was ushered into a little room, amd simply asked if I wanted my Dad resuscitated, if and when it happened. I originally said yes, but having thought about the rib breakage, and for the life I would be bringing him back to. At the time Dad was in hospital, he had had a stroke and was 100% not able to speak. I don't think his brain knew he could, as he never tried. Our final moments were cruelly taken away, but my lovely Dad still managed to express his love and that means a lot.
I am grateful for being asked about DNR rather than Dad, hw would not have handled it, but I do wish it was explained to me, how you have written it.

Leila xx

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Fri Jul 10, 2015 6:20 pm

My darling brother has taken a turn for the worse, my head is everywhere and what makes it worse I am 120 miles away. Since I left him wednesday he has been in contstant pain, his wife called the nurse,she came round and suggested he went into a Hospice so they can manage his pain, OMG it is real, it really is happening.

Fifi

Re: Brother with inoperable pancreatic cancer

Postby Fifi » Fri Jul 10, 2015 6:35 pm

Where is your brothers pain? What pain relief is he already taking? Does he have an oncologist? Sorry for the questions, just trying to help. It is a horrible time, but you need to keep your head. He needs you strong.

Leila xx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Brother with inoperable pancreatic cancer

Postby Didge » Fri Jul 10, 2015 7:14 pm

The stress is enormous when they are in pain but the hospice staff are experts at getting pain under control. I thought I had lost my man a few days a go but he is out of hospital again and the palliative team are involved. Pain management is difficult for him because he has one tumour in particular pressing on nerves but there are so many approaches they can try and with different doses that I am sure they will succeed in getting your brother more comfortable. If they get him pain free he will be able to enjoy some of his time again. I was surprised when my fella said he had as his goal reaching his birthday next week, that the palliative care nurse said she hoped he was setting his goal a bit further than next week! This gave him a boost so don't assume that all is lost at this point. Thinking of you and over the weekend too - it's always difficult I find, over weekends. I hope he can get some specialist care very soon xx

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Sun Jul 12, 2015 6:37 pm

Once again a big thanks for your support. I was going up to see my brother today as I really did not think he would be with me on tuesday which is the day that I go to see him, his wife called and said the ambulance crew were impressed as they did not have to carry him to the ambulance, he very slowly made his own way, once at the hospice the nurses set about making him comfortable, they were waiting for the Dr to come and see him, his wife said his whole persona changed once he was in the hospice, like a great weight was lifted, he has told me he does not want to be left on his own in fear of dying on his own, I suppose being in the hospital he has people round him all the time. My emotions were very mixed and I was devastated went I was told he was going into the hospice (as my previous blog stated) but now with what my sister-in-law has told me I feel so releived for him, she encouraged me not to come up today as it was a massive trip for me to get there, 3 hours driving there to stay for 3 hours, then drive 3 hours back, I told her my concerns and she assured me that he was looking and feeling a whole lot better.

I am experiencing emotions that I never knew existed, I am so pleased to hear he is ok and look forward to seeing him Tuesday.
One last thing she did say that the hospice said they would keep him with them until his home was ready for him to move into, no more living in make shift rooms with no personal bits and pieces of his around.
Thank gooodness there are willing and caring people around.

Love and hugs to you all.

Fifi

Re: Brother with inoperable pancreatic cancer

Postby Fifi » Sun Jul 12, 2015 7:36 pm

Pleased to read that your brother is ok, I don't mean that in a flippant sense.
As I have said before, your posts do sound like my own did. Your brother does remind me of my Dad and some things he used to say.
My Dad never said to me that he never wanted to be left alone for fear of dying alone, but I know that if he could speak, he would have said it to me.

Have they got his pain under control? Hospices aren't like people associate them anymore. They can be just for getting pain under control and for a break or some care, they aren't only where people pass away. I know your brother is probably thinking this.
I really really hope that his home is finished soon so he can see it.

Leila xx

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

Re: Brother with inoperable pancreatic cancer

Postby rsk1974 » Sun Jul 12, 2015 8:23 pm

Im pleased that he's in a hospice and that they can get him really comfortable and pain free, I always think.there's ideas of what hospices are like and I was devastating when the Dr said to consider it for my dad.But we heard so many positive things and how great and caring they are. I hope your visit Tuesday goes well.

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Wed Jul 15, 2015 8:04 pm

My thoughts and wishes to all of my dear Friends on this site.
I have just got back from London, I stayed with my brother all day and night at the hospice, they have put a make shift bed in his room, it was nice as his wife was able to have a break and I spent quality time with him. They are still trying to manage his pain and are starting him on a drug called Fentora, this is in addition to his morphin which they hope he can have in patch form as he so desperately wants to get out of the hospice and move into his new home.
Every week I go I see the tumor getting bigger and bigger, causing him so much pain. Thank goodness for the Hospice and every single person that works there from the Dr's right the way through to the Volunteers offering you a tea/coffee they are all wonderful people who are making his time there as comfortable and as pain free as possible.

Fingers crossed heis only 10/14 days away from moving in.
Love and hugs to each and every one of you
XXX

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Brother with inoperable pancreatic cancer

Postby sandraW » Thu Jul 16, 2015 12:40 am

Hi Bryansie,
Its good that you got to spend time with you brother, the people in the Hospices, are amazing aren't they, they were just the same in ours even though we were only there a short time, they knew we wanted to just be together as a family and left us to get on with things staying in the background but ready to give support if we needed it.
Lets hope your brother can get to his new home, hopefully if the hospice can get his pain sorted, he will feel much better and go home as soon as its ready.
love and hugs back to you too, take care sandrax

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Mon Sep 14, 2015 10:48 am

Good Morning to each and everyone of you,
I have not been on here for so long, 2 days after my last visit to see my beautiful brother I got a call to say he did not have long, I rushed to London and spent his final 5 days with him, every minute was a blessing, some sad, some funny, we kissed, we laughed, we cried, we held each other tight, I watched my brother slowly leave this earth. My heart is broken but he is out of pain. No wordsatthis moment in time can make me feel better, I struggle each day, remembering the call I got 11 weeks earlier from him telling me that after having 2 weeks of stomach pain he was told he had inoperable pancreatic cancer, what a shock, Life is so so cruel, I have to tell myself everyday he was such a loving, caring, sweet, thoughtful person that he was needed else where. His Funeral was an amazing day, I am so proud of his partner, she gave him a lovely send off along with the 400 people that came to say goodbye. I stood up to read a poem and was lost for words when I looked around the room to see so many people there.

I send my love to all of you that have or are going through what I went through.
For you lovely lovely people who have limited time here, My thoughts and prayers are with you.

XXXXXX
Sue

IN LOVING MEMORY OF A BEAUTIFUL MAN/PARTNER/BROTHER/FATHER AND FRIEND
MICHAEL JOHN LIMERICK

11/6/1959 TO 27/7/2015 R.I.P

Bryansie
Posts: 16
Joined: Tue Jun 16, 2015 9:58 am

Re: Brother with inoperable pancreatic cancer

Postby Bryansie » Mon Sep 14, 2015 10:57 am

My brother never got to see his new home, let alone live in it, I truly believe he did not want to go there as it would have made it harder for his partner, having him there for a few weeks and then he passed away.
Life is very strangeand stranger things happen/don't happen for a reason.
XXXXXXXXXXXXX

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

Re: Brother with inoperable pancreatic cancer

Postby Sueoliver » Mon Sep 14, 2015 4:20 pm

I am so sorry to hear your news. I can feel your pain and heartbreak. I am glad the funeral was amazing and so many people attended.
Thinking of you and take care of yourself.
Love Sue xxx

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Brother with inoperable pancreatic cancer

Postby sandraW » Mon Sep 14, 2015 6:41 pm

Hi Sue,
Life sure is very strange, I am so sorry you have lost your lovely brother Michael, this disease is so very cruel. In your case it was so swift, you can't have had a chance to take it all in yet. It will also be strange for his wife moving into a new place so soon without him.It was lovely that you could spend those last days with him. take care sandrax xx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Brother with inoperable pancreatic cancer

Postby sheena » Mon Sep 14, 2015 9:47 pm

Xxx in my thoughts