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
Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Wed Mar 06, 2013 10:57 pm

I know what you mean Deb, it seems cruel but can't see there being a change because there will be uproar, just can't stand seeing her suffer.
I'm probably going to sound ridiculous saying this and I apologise to those who have lost their loved ones but I'm finding it to be a terribly lonely place, my poor husband is working half days and spending til gone midnight at the hospice and so yes he's going through so much worse than me just feeling lonely but just a shallow gripe, god I miss him and 'normal' family life..
Again apologies because it seems pathetic saying it! I've been really worried tonight cos my husband said Anne was in lots if pain yesterday and again today, she was taking pregabalin(? spelling) which is prescribed for Neurological pain, I think this was for nerve pain to do with the cancer and her 2 collapsed vertebrae but since she has been unable to swallow tablets she has been off it and so the pain has just worsened.. I wish they could help her, I've sat worrying and I find that is making me feel more lonely, so far away from Anne and my husband, am I confusing helplessness with loneliness!?
Totally selfish post just about my feelings but I suppose this forum is like my blog too, my way of expressing my journey and my feelings.. My outlet, not sure how I would cope without it!
xxx

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Newbie, advice and support please?

Postby yorkypaul » Wed Mar 06, 2013 11:17 pm

Hi Sam
Don't feel selfish. I have experienced those same feelings. The helplessness makes you feel alone and vulnerable. You are so right to use this place as a means to unload and vent. We have all done it. Stay strong. One day at a time. Sending you a big hug
Paul x

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Newbie, advice and support please?

Postby charney » Thu Mar 07, 2013 9:35 am

Sam your feelings are normal, when my mother in law was ill, my husband was going in to
see her every day after work and I too felt like you, then would feel so guilty because his mum needed him far more than I did and he needed to do this as well. You are on such a roller coaster ride, your emotions will be turned upside down, After my mother in law died my husband was so pleased that he had spent this time with her. I am sorry that
you are having to watch Anne suffer so much it is not easy, and with such mixed emotions
going through your head and heart im not surprised you are feeling so low and helpless.
Audrey was only really poorly for 2/3days and that was hard enough, but what you are going through with Anne must be heartbreaking and I so admire you for being strong.
All my love
cheryl xx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Newbie, advice and support please?

Postby DRAD3 » Thu Mar 07, 2013 5:54 pm

You are right about this forum being everyone's personal blog - such a godsend when you need to get those thoughts out of your head, especially the ones that make you feel guilty. As you have found, Sam, we have all had them, so no need to punish yourself, what you are thinking and feeling is completely normal. I had so much help and support when I was caring for my husband but in the end I had to deal with my own experience of it on my own and it did feel extremely lonely and frightening and I so wished for it all to be over, to get back to a "normal" life and to have some peace, then the guilt would set in because my husband was obviously suffering so much more than me. Such an awful thing to have to go through, for all of you. Sending you love and strength, as always.
Deb
x

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Thu Mar 07, 2013 11:43 pm

Thank you Paul, Cheryl and Deb. I wouldn't have it any other way, I actually was the one who told my husband to be with his mum as much as he possibly can, I know her sons are the most important things in the world to her and she needs them beside her as much as they need to be there too. I suppose I just feel helpless and useless, like I'm in some sort of limbo where the world carries on but we aren't able to enjoy life, I don't feel in anyway resenting of this situation causing our lives to be put on hold I just realised today that I can't remember the last time I took a photo of my daughter (I used to take photos a lot, my camera phone is full of cheesy grins and my giggling 2 year olds face) but recently we haven't taken her anywhere, no trips to the farm or the zoo or walks in the woods.. Must make more of an effort to find a little time to do things with her rather than getting wrapped up in the situation, as important as it is, my little girl smiling and enjoying life is important too, need a bit if normality! I realised we'd not been to my parents since Xmas either, they live an hour away and come to see us weekly but we went at least once a month to their house and maybe stayed the night.
Today Anne was restless and uncomfortable, they made the decision this afternoon to give her a sedative to help her sleep, she slept from 3pm and is still sleeping now.. At least she is comfortable. My husband is spending the whole day there tomorrow while I work and we'll all go on Sat! We are now 10 days since we were told 2-3 days... Still fighting!
xxx

Welshie
Posts: 2
Joined: Wed Oct 03, 2012 12:08 am

Re: Newbie, advice and support please?

Postby Welshie » Fri Mar 08, 2013 9:54 am

Hi Sammylou,
I feel so much for you, your Husband and your family. This is such a horrible journey. I cant speak highly enough of the support from PCUK and you are right, it so helps to have someone to talk to who truly understands this. Your story is so similar to my families experience with our Mum, who sadly passed away March 11th 2010. We have also lost her brother and cousin to the same cancer. Explaining to a child as young as yours is extremely hard and I really don't know what to suggest. When Mum was going through it my eldest Grandson was 8 years old and my sisters grandchildren were all under 4. All of them very close to Mum. To this day I am not sure how much they understood at the time, but for Santino (aged 8 ) it was awful. He tried to be a "man" which broke my heart. The main thing now is to make sure that your MIL is as comfortable as she can possibly be. As Debbie said, every journey to this is different so what has worked for one may not be right for another. Just lean on your friends/family for support when you need it, dont bottle your emotions up. If you want to message me I can send you my email address. Sending you strength for the journey ahead x

Welshie
Posts: 2
Joined: Wed Oct 03, 2012 12:08 am

Re: Newbie, advice and support please?

Postby Welshie » Fri Mar 08, 2013 9:56 am

ps.... not sure how the smilie got there...I certainly didnt choose it, I put down Santino was eight years old ??

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: Newbie, advice and support please?

Postby Catherine » Mon Mar 11, 2013 12:11 am

Sam,

I am not surprised you are feeling lonely. It's a horrid scary place to be in. Don't feel bad about any of your thoughts, life doesn't come with an instruction book on what you are supposed to do/ think / feel at any time. You are doing amazingly well.

Lots of love

Catherine xxx

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Wed Mar 13, 2013 7:03 pm

Thank you everyone for your ongoing support.
Welchie thank you so much for replying, I'm sorry for your loss and thank you for the comments about handling the situation with our daughter.
Anne has been unconcious since they sedated her last Thursday, she is/has been moaning on and off but a relief that she is finally comfortable, something she has rarely been throughout her battle. It's a sad waiting game now, knowing what is upon us but just waiting, holding breath, we know what is coming. We took our daughter to the hospice on Saturday and despite heavy sedation and not waking since Thursday we were shocked that after coming to leave I lifted my daughter up to Anne's face and said "Kiss Nanna goodbye and tell her you love her, we have to go now.." As she kissed her and said I love you Anne's eyes pinged open wide, in an instant, while they were face to face and immediately shut again! My heart in my throat, its as if she just held into enough strength to see her grandchild one last time! She hasn't opened her eyes since..
My daughter later said to me that we must help her uncle (my husbands brother), I told her he would be ok and that he was staying at the hospice with Nanna because Nanna was so poorly and she replied "We'll work it out mummy". She's 2 and so clever, so perspective. When we were at Anne's house an hour later she asked to go to Nanna's room, I took her in and she stated at her empty bed and said "Goodbye Nanna, goodbye".
I've heard people say children are somehow closer to spirit before but despite a lack of faith I find myself believing that to be true now!
xxx

PCUK Nurse Dianne
Posts: 317
Joined: Tue Aug 14, 2012 3:29 pm

Re: Newbie, advice and support please?

Postby PCUK Nurse Dianne » Thu Mar 14, 2013 9:21 am

Hi Sam,

Such a difficult and heart wrenching time for you. It sounds like you have done an amazing thing with your daughter taking her to see her Grandmother, and at times like these you have to do what you feel is right and not be guided by others. You know your daughter better than anyone else, and to have shared such a beautiful moment with Anne will become a special memory for you all.

Thinking of you all over coming days, and hoping that Anne is comfortable and at peace.

Kind regards,

Dianne
Support Team

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Newbie, advice and support please?

Postby DRAD3 » Thu Mar 14, 2013 8:03 pm

Hi Sam
Thinking of you and sending my love. So lovely to hear Anne opening her eyes for one last look at her grand-daughter and how your daughter's sixth sense is bringing you some comfort. My daughter comes out with some amazing things sometimes which makes me firmly believe that there is "something" in it. Hoping Anne continues to be comfortable and peaceful.
With love
Deb
x

Sammy-Lou
Posts: 56
Joined: Wed Sep 12, 2012 3:02 pm

Re: Newbie, advice and support please?

Postby Sammy-Lou » Mon Mar 18, 2013 8:39 pm

I don't know where to start but I want to update you, you have all been such a support to me and I don't know how I would have got to this point without the kindness and support of everyone here and Jeni.
Anne sadly passed away in the early hours of Friday morning peacefully in her sleep. She hadn't woken for almost a week and had been comfortable for the longest period from the beginning of her journey, it really had been the first week she had not been in pain and sadly that was only achieved by sedation.
We are of course devestated and had to go through the hardest thing I have ever had to do yesterday when we told our daughter that her Nanna had died, our wonderful little girl, who got tissues to dry our tears and cuddled us to make us feel better.. We helped her to make a message (a heart cut from card which she coloured and we wrote on the back of) which we tied to a balloon with ribbon and let go, to send to Nanna to let her know we love her and miss her. There have been lots of tears over the last few days and I'm sure there are many more to come, we just need to try to be as strong as we can...
I take some comfort from knowing that she is not suffering anymore as I hated to see such a wonderful and strong lady being destroyed in the way she was but it will never make it alright that her life was taken.
Plans for the funeral have started and the service has been booked for next Tuesday, a service in her church before moving to the crematorium, I know we have many difficult days ahead, I just hope we can all be strong and get through them together.
Thank you again, from the bottom of my heart, for all the friendship and support you have all shown us and I hope you are all doing well on your journeys. If anything good could come from all this is that I want to fundraise and where possible help and support others like you have all done for me. Without you, I'm not sure I would have coped!
Love and best wishes to all xx

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Newbie, advice and support please?

Postby yorkypaul » Mon Mar 18, 2013 10:18 pm

Sammy-Lou, I am so very sad for your loss. You will feel as if you want the world to stop turning to give you time to get to grips with this terrible loss. However, as I have found, this can not happen and, somehow, we find it within ourselves to keep going.I took each day an hour at a time. There is no right or wrong way to feel. I am sure that, with your loving family around you, you will be stronger than you thought possible. It won't feel like that just now though. The love and support that you will give to, and take from your loved ones will help you tremendously. One of my favourite quotes is a Winston Churchill one on coping with adversity: "When you are going through Hell, keep walking." How very true I have found it to be, and how incredibly difficult. You will do it though.
I am a mere 9 weeks down the line. Things are still incredibly difficult. I am still shellshocked and, sometimes, in denial. I am still here though (even though I sometimes don't want to be). The passage of time helps us all adjust to our new situation. It doesn't mean that we "get over it" or "move on" as far as I am concerned(I lost my lovely mum 4 years ago)we just adapt.
Look after yourself. One step at a time. Thinking of you and your family at this awful, sad time. Many of us know just how you feel at the moment. Feel free to talk to your forum family if it helps.
Hugs,
Paul

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Newbie, advice and support please?

Postby charney » Tue Mar 19, 2013 9:55 am

Sam Im so sorry for your loss, I know how you feel, grateful that Anne s suffering
is no more but so sad that she is no longer around, take each day at a time, small steps,
Keep strong.
All my love
cheryl xxx

PCUK Nurse Jeni
Posts: 1115
Joined: Mon Jun 14, 2010 1:30 pm

Re: Newbie, advice and support please?

Postby PCUK Nurse Jeni » Tue Mar 19, 2013 2:51 pm

Dear Sammy,

So sorry to hear the news about Anne, but of course, so glad to hear that she was peaceful, as you say, for the first time since the journey began.

We hope the plans for the service go well, and that you have some time to grieve as a family.

Kind regards,

Dianne and Jeni.