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

Re: Thank you and our story... but we are not that far yet!

Postby Didge » Sun Jan 29, 2017 11:36 am

No, I would not tell him. Actually he knows anyway what is coming, but not when. I remember when Rob thought he was dying that day and the consultant came and said in his opinion he would not be departing that day or the next (it was another 3 weeks) and he was SO pleased! it lifted his spirits. So I would say, knowing your dad far better than the medics do, not to say anything. When Rob was near the end he knew he was dying but said it when he wanted to and the rest of the time, he didn't want to talk about it! Another incidence of box ticking! We have seen this before, I think they have a list and the box which says 'make patient aware death is coming' remains unticked. It is wrong and will be get rid of in time. But that doesn't help you at this moment. x

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

Re: Thank you and our story... but we are not that far yet!

Postby sandraW » Sun Jan 29, 2017 11:42 am

Dandy, So sorry to hear you dad is back in the hospital, and what a bloody horrendous time all that must have been for you all.
As to your question on whether or not your Dad should be told, my answer is No an emphatic NO.

Trevor's mantra was he was always going to beat the disease, no matter what anyone said, he was going to get better, and even though I know deep down he did understand, his way of coping was to believe that.
When he was admitted to hospital to have a procedure 10 days before he died, he actually asked the lovely lady registrar out of the blue "how long have I got" she luckily knew us and asked him if he was sure he wanted to know, he replied "yes" and she told him it was a matter of weeks, as things had progressed very quickly much quicker than expected. We went outside to the garden and cried a few tears. It wasn't mentioned again, until a couple of days later, when the consultant caring for him asked if he wanted to know the state of play, he firmly replied "NO" but speak to Sandra as she will.
Suggesting he go to the hospice was very hard as he wanted to go home, but his pain relief was still all over the place and I knew he needed to be somewhere were there was immediate top up available.
It wasn't like it is in the films he didn't tell us he loved us, we knew that already anyway it
just seemed to deflate him, if that makes sense, so no Dandy don't tell him if he wants to know he will ask.
Let hope that those decisions are far away anyway, sending love, strength and hugs, sandrax xx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Thank you and our story... but we are not that far yet!

Postby Proud Wife » Sun Jan 29, 2017 11:51 am

Sandra

A fair few of us are in contact over on FB. Would love you to join our group. Email admin for my details is you would like?

And no, it's not like the films is it? We told hubby constantly that we loved him as he passed but I would have so loved for him to have said a last goodbye to me. xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Thank you and our story... but we are not that far yet!

Postby Elaine123 » Sun Jan 29, 2017 11:58 am

DG I am so sorry to hear about your Dad and also angry that your Mum and Aunt were put through what happened. I don't think people need to be reminded they may be dying I think that will have been at the front of their mind since the mind numbing diagnosis and prognosis was given to them. We have no clear idea if this will distress the person or if they already are aware of it. I will not allow anyone to tell Pete this as he has been living with that knowledge for the last eight weeks now and I don't think telling him would serve any purpose. I don't want what hope Pete has to be extinguished because what's left if we don't have hope. This may not be everyone's view and I hope it doesn't upset anyone .....it is purely my personal preference.
Stay strong DG .
Elaine
X

shelda
Posts: 59
Joined: Thu Feb 04, 2016 11:41 pm

Re: Thank you and our story... but we are not that far yet!

Postby shelda » Sun Jan 29, 2017 12:14 pm

Oh dandy this is so sad I don't come on very much since losing mum but from reading Pw post I knew I had to reach out. Your situation right now sounds exactly how mums played out at a & e!!!! We took the decision as a family that we would not tell mum it was the end, it was hard enough for us to comprehend let alone explain to mum, plus why make her suffer more or cause distress, what could be gained from telling her that, she knew she had this awful disease that was going to take her from us she'd lived with that for the 10 month since diagnosis and in her strong brave way I do believe she had come to terms with that. Just be with him as much as you can, play his favourite songs, talk about the happiest memories and just get as many kisses and hugs in as possible. Thinking of you sweetheart xxx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thank you and our story... but we are not that far yet!

Postby Justamo » Sun Jan 29, 2017 1:29 pm

DG, you don't really need to ask for advice. You KNOW what the answer is. Don't tell him any more than he needs to know. You, Dad and the family have existed on hope and the will to survive since the start of this. You can't take that away now.

Love and prayers
Mo

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thank you and our story... but we are not that far yet!

Postby Veema » Sun Jan 29, 2017 1:52 pm

Its really hard but I think no...don't tell him. Nige didn't want to know...He knew it was imminent, he wasn't stupid or deluded, but when the hospice nurse gave me an indication of 3-4 weeks I didn't tell him...he wasn't ready. As it happened it was only 4 days later that he died. Part of me gets comfort from the fact that he didn't know, but part of me is sometimes sad that he might have wanted to say stuff that he didn't get to...or perhaps write something to the children for them to read later. I don't think there's a right or a wrong choice, but it's got to be your choice, not the medics. Does he have a DNAR in place, because I think that is an important thing to have as the end draws near.

Much love DG...it's bloody awful.

Vx

stepuha
Posts: 93
Joined: Thu Nov 10, 2016 2:31 pm

Re: Thank you and our story... but we are not that far yet!

Postby stepuha » Sun Jan 29, 2017 11:32 pm

Dear Dandygal,
I am sorry to hear that your dad is feeling worse again.
I am amazed that in this continuous turmoil you still find time and energy to support the others on this forum.
My immediate reaction to your dilemma was 'No, please don't tell him' but after imagining myself in his position I could find 4 reasons why I would like to know:
1. I am my own carer, at least for the moment. I do my own research, deal with doctors, hospitals, treatments and medications. My family don't understand any of it and so I can't really rely on them in making any decisions relating to my health. This, however, does not apply to your dad as I am sure he trusts you explicitly in making the best possible choices.
2. I have two small children and would like to have an opportunity to record some videos and write letters when the time comes. I am not ready to do this at the moment.
3. My mother lives outside the EU and due to all sort of visa and stay duration limitations we really need as much notice of an imminent death as possible.
4. I deal with all the admin in our household and it would give me some peace of mind if I could do some sort of hand over/notes or even show my husband how to find relevant documents.
These are my reasons and they will not be relevant to your dad and may not seem important. I am just saying that there may be some practical reasons which do not seem to be very important but may give some peace of mind to your dad if he has a chance to deal with them. Only you and your mother know your dad well enough to see what they are (if any).
Also, won't the treatment plan or the absence of such tell him in itself how grave the situation is? Will the doctors not stop chemo/radiation, start suggesting a hospice if it gets to that stage?
I am thinking of you and your dad and sending you positive energy. I have no doubt that your will make the right decision when the time comes but I truly hope it is not that time yet.
x Stepuha

Marmalade

Re: Thank you and our story... but we are not that far yet!

Postby Marmalade » Mon Jan 30, 2017 5:39 am

Well said Stepuha,

M xx

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: Thank you and our story... but we are not that far yet!

Postby Quickasyoucan » Mon Jan 30, 2017 6:13 am

Thinking of you and your dad Dandygal

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Thank you and our story... but we are not that far yet!

Postby Elaine123 » Mon Jan 30, 2017 9:29 pm

Just on to see if there is any update on your Dad ...hoping he is stable again...this has been one huge worrying time for everyone and sometimes it is this every day is different with this disease syndrome that seems to give us the stress connected with it. You take care and wishing like mad that your Dad picks up again soon.
Elaine
X

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Thank you and our story... but we are not that far yet!

Postby Proud Wife » Mon Jan 30, 2017 11:53 pm

Yes stephua that was a really lovely post.

DG I'm hoping no news is good news? Best of luck for that MDT MEETING tomorroe xx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thank you and our story... but we are not that far yet!

Postby Justamo » Mon Jan 30, 2017 11:58 pm

Hope things are OK DG, thinking of you.
Love, Mo

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Thank you and our story... but we are not that far yet!

Postby Dandygal76 » Tue Jan 31, 2017 11:29 am

We were not okay, then we were and then we weren't and now we are... sort of... by Friday we will be better (hopefully). If that has made you dizzy then you are still nowhere near to how we all feel.

I won't go from the start because you will fall asleep before I get to the end. Let's got to 1pm ish yesterday. My dad was in excruciating pain. This had been going on for a hour and he was on his knees. I was completely oblivious and at home. Then my sister called me... you need to get down here right now as we don't know what to do. Dad is on his knees and puking because of the head pain. They had asked twice for his prescription morphine and still none had been given to him. An hour... you would not leave a dog like that and my mum and sister was distraught (considering we had been waiting 2 days for the palliative care team to turn up). I said I am on my way and I will sort it. Then I thought what can I do that they haven't from there and I took my coat off and signed on my work e-mails. I call the hospital and said ext .... (cancer clinic manager). Voicemail. Phone back... bleep number ????, no response... bleep her again. bleep her again. Lovely lady picks up and I said in tears my dad is in very bad pain and no-one is doing anything about it. His medication is not sufficient and whatever way this is going he should not be in pain and I will not accept otherwise. She went Dandygal (well she doesn't call me that... hahahaha) I will sort it. You need to trust me and within the next 10 minutes this will be sorted just go and see your dad. Well I do trust her, I didn't think she could go higher in my expectations but I have found a level I am not even familiar with myself. If there is a definition on an angel... she is it.

I leave the house and when I get there (which is less than 10 minutes) my dad is surrounded... palliative care team, ward nurses and some weird bloke who I think may have been there as a spectator. Dad now has a driver and a constant feed of drugs. He has been taken off some though as his liver function is going down hill.

I leave to go to the shop to see if I can get some soleros (dad's latest fancy) and as I walk out this lovely lovely very busy cancer clinic lead and manager walks onto the ward and she gives me a hug! I said to her I did not do that lightly... I try very hard not to abuse my links with people. I have the oncologist e-mail and I have never e-mailed him. I don't want to be a burden, I just want to make sure my dad is okay as one of many patients. She said I did exactly the right thing and dad should not have been suffering. I said I wouldn't mind if it was a desperate ward but I have walked around and no one is in distress. You expect that in a&e but not on such a quiet ward. I have been assured it will not happen again.

So, she takes me to a side room and that busy lady gave me 30 minutes of going through everything. Treatment now, end of life care, how I screwed up not mentioning symptoms before. It was like she had the whole day for me. Then she went and did the same with dad.

She said there are no guarantees but dad has done so well. He will be transferred today after the MDT. Forget paying private for the gammaknife etc if we do not get it... he will get the best possible treatment. It is not funding and dad is so suffering there are no waiting lists. She expects the brain to be treated this week and it is not the cancer but the swelling causing the problems.

I have had the biggest fall with my sister. I tried to talk about end of life care with a view to getting us some counselling on what to do. She went mad and said to me we all have a say in this you know... I said yes of course and that is why I want the counselling for all of us. Anyway, ultimately this is mums decision (and dads if mum wants that). Then she had the audacity to moan I did not get there until 4pm on Monday, even though she left early and I spent longer with him. I messaged her and told her what a selfish cow she is (pc does not bring the best out in us all). Do you want a voice... do you really?? Well, I have two skype conversations going on this week over gamma knife and something else at £400 a pop. You do it. I was also trying to sort out counselling around end of life care... you do it. Bear in mind that end end game PC is crap. So, you don't want to discuss DNR... on your head be it because now it is all over to you and if he suffers it will be on you. Yes you have a voice. So, I was talking to the palliative care team in the corridor yesterday when she came out to ask a question. When she hovered I said... I am talking about end of life care and she put her hand up and walked of saying she didn't want to know. So, she doesn't really want a voice after all. x

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thank you and our story... but we are not that far yet!

Postby Veema » Tue Jan 31, 2017 12:10 pm

Quick, quick reply as I'm on my very short lunch break...

Words said in the heat of the moment cannot be taken back...stressful situations bring out the worst in us, so take a deep breath with sister and don't rise to her...you'll only end up regretting it.

You are absolutely right about the DNAR...it needs sorting...it would be awful to watch your Dad go through a resuscitation to prolong his life just days or weeks.

Sending you all my love and loads of positive vibes.

Vx