very new to this - advice?

[allietalker]

Hi, my name is allie

I'm 19 and in university.

My family and I found out 3 weeks ago that my beautiful nannie has pancreatic cancer. Unfortunately it is too advanced and she is not eligible for any treatment/chemo.

We have been given a few months.

She is my best friend and I'm struggling to think of life without her.

I've never known anyone with cancer before, and I'm hoping that there are people here who can maybe explain things to me or just talk...

Xx

[PCUK Nurse Dianne]

Hallo Allie,

Welcome to the forum. I am sorry to hear the devastating news about your 'Nannie' and appreciate you must be quite heart broken. This is obviously a very difficult time for you and your family. Being given that information is difficult to deal with and even more so when a 'time frame' has been given.

I am sure you will have a lot of support from the 'Forum family' on this site. I will email you directly and maybe you are able to give some more information and we can help you through the process.

Best wishes,

Dianne

Support team.

[DRAD3]

Hello Allie

I am so sorry to hear about your nannie - you will understandably be devastated and my heart goes out to you. You are not alone, there are plenty of people on this forum who totally understand how you feel and will be a shoulder to cry on and an ear whenever you need to talk. Be sure to take advantage of every bit of support you can access - your family are beginning a difficult journey and I am glad that you have found this site - we will do all we can at least. Do email Dianne too - the support team are second to none at giving expert support.

Take care Allie, sending you lots of love

Deb

x

[petra]

hi allie so sorry to hear about your nannie, personally i find these time frames not very useful at all. of course i cannot comment on your nan but remember each person os different! all you can do is support her the best way you can! not easy when you are away at uni though. lots of love petra xxx

[allietalker]

hiya everyone, thank you for your replies i didnt expect it when i logged on!

just an update, basically within 24hours sunday/monday my nannie has deteriorated very quickly. she was hallucinating lots, telling us how she sometimes sees her parents (how lovely!) and she is very confused. She asked my uncle to look after the horse that she had tied up outside - even when she is unwell she can still make us all laugh!

Unfortunately, yesterday morning she suffered a stroke, the doctors and nurses are unsure why..we think maybe she was a little stressed after realising her fate..?

We have been told that this stroke was a very bad one, and she is now in a critical condition.

She has lost all use of her right hand side and can no longer communicate with us.

Her routine consists of 'waking up' in what seems like a trance..rubbing her stomach where the pain is (This is usually every 2 hours) the nurses give her some more morphine and then she goes back to sleep again.

The hospice that she was going to be admitted to this week have advised that she stays in hospital. She is now on a sort of little machine that is attached to the right side of her stomach, this releases painkillers every minute of the day..she is currently on the smallest amount and they will gradually build her up as they try to balance her medication/pain.

Its very hard to see her in this way at the moment, but my family is pulling together and sharing shift duties to go and sit with her.

All of the medication that she is now on is not for her cancer, they are no longer treating that as the stuff she was taking was thinning her blood..which is not suitable for someone who has suffered a stroke as it can cause internal bleeding in the brain.

She hasnt eaten for days now, and the hospital have said that this is not a concern as putting her on a drip would only prolong her life..therefore she would be in pain for longer.

Although she is unable to communicate, today I went to see her with my mum for mothers day..and we were talking to her about the day and what we had bought - I nu..dged her bed by accident.and her eyes immediately shot open and she gave me a glare 'GET OFF MY BLOODY BED!' is what we imagined her to say:p

Has anyone been through anything like this before?

The lovely nurses and doctors can't really answer many questions as they don't understand what is going on with her..they just said they are going to keep her as comfortable as possible.

Allie xx

[Catherine]

Oh bless you Allie,

How awful for you to have the diagnosis and then this in what seems next to no time. I don't have any experience of your Nannie's current situation. It seems like you have an amazing family. Stay as strong as you can (ridiculous I know, sometimes I want to shout and scream at the cancer asking why it wants to take our loved ones). Thinking of you

Catherine xxx

[DRAD3]

Hi Allie

My husband, during his last days, also "hallucinated" - he saw lights and saw his parents. He became very confused and would forget where he was or how ill he was and try to get out of bed (only to fall) but also had moments of complete lucidity where he was very much with me. It is great that you are taking it in turns to sit with your Nan. The fact that I was a constant for my husband was reassuring for him at a frightening time and I am sure this will be the same for your Nan. It is good news to hear that she is receiving good and constant pain relief. So sad for you all though and I send lots of love and will think of you.

Take care

Deb

x

[PCUK Nurse Dianne]

Hi Allie,

I am so sorry to hear that your Nannie has had a stroke, on top of everything else that is quite sad for you and your family. This may have been caused by high blood pressure, as you say she may have been a bit stressed with everything that was going on. I think your approach of having everyone around her at this time is important and that you are able to sit with your Nannie and that she will hopefully be aware that you are there for her. The little pump is a 'syringe driver' that will deliver incremental doses of pain relief and that sounds ideal for her at present. Have you asked the medical/nursing team if they have involved the palliative care team in your Nan's care? It may be helpful for you to speak to them also, just so that you can understand exactly what is happening with your Nan and how they will manage her pain relief.

Do feel free to email or phone us Allie if you wish to talk in person to either Jeni or I on the support line (support@pancreaticcancer.org.uk & 02035357099) if we can help further.

Kind regards,

Dianne

Support Team

[allietalker]

hiya everyone.

literally 5 minutes after my last post we were called to the hospital as my nans breathing had changed dramatically. she was breathing three times and then stopping for over 20 seconds..we were told this was normal for the last stage of life.

we stayed all night till 12 the next day, and then came back and stayed till 2am. We then left as she had settled and her breathing was constant at that point.

We were called back in at 4.30 this morning, and by the time my family got there she had already past at around 4.35.

but we know that she was comfortable and not in any pain, and she looked beautiful in her new mothers day pyjamas.

i feel very strange today, it hasn't sunk in yet.

I'm expecting to be back at the hospital tonight, I'm not sure how the next few days or weeks are going to go.

its all happened so quickly, it will be 4 weeks tomorrow in which she was diagnosed, and 3 weeks since we found out she wouldnt have treatmeant..didnt know it could have been so soon!

strange how the weather has been freezing..and even snowing yesterday(!) but today the sun is out and shining bright think its her way of telling us that shes okay..hopefully having a scotch with her best friend up there!

thanks for all your support, much love xxx

[DRAD3]

Hi Allie - so very sorry to hear your news but relieved to hear that your Nannie had a pain free and peaceful passing. This will help you in the days to come, I am sure. Thank you to your Nannie for the sunshine - my husband sent me that beautiful warm and sunny day last week for my birthday! Our lost loved ones are all looking out for us. Remember we are still here if you need us. Take care of yourself and love to you and your family at this sad time.

Deb

x

[PCUK Nurse Dianne]

Hi Allie,

I am sorry to hear of your lovely Nannie's passing. Please accept our sincere condolences from all at PCUK. As Deb has commented, it is a blessing that your Nannie was peaceful and comfortable, and great that you have been there so much for her over those last days. The days and weeks ahead will be full of emotion and I am sure you will receive much support from your new 'Forum family', we are always here to listen in those difficult hours.

With our sincere condolences and hope you treasure those special memories you have of your Nannie.

Kind regards,

Dianne

Support team

[petra]

So sorry to hear of your nannies passing,but so glad she was comfortable. Much love Petra xx

[Catherine]

I'm so sorry to hear of your Nannie's passing. Lots of love and hugs to you

Catherine xxx

[allietalker]

hi everyone, thank you so much for your lovely words, they have been very comforting.

my family and I are getting on well, strangely.

i have cried once since her death, which was on the funeral.

other than that, i can't seem to grieve.

i have been to her grave, looked at pictures, found things she has bought me and even been to her house to start sorting her stuff out..nothing is making me upset!

its driving me mad because i feel so heartless!

friends have suggested that i might be in shock or even denial.

i expected that I would be devastated, as she was such a huge part of my life..but it just hasn't happened yet!

i don't know whether this is because I watched her deteriorate, and it got to the point that we wanted her to go so that she wouldnt be in pain..it was the most heartbreaking thing to watch...

Has anyone experienced anything like this?

will it ever hit me?!

everytime my phone buzzes i keep expecting it to be her texting me...when i am struggling with uni work I keep trying to ring her for advice...I still believe she is here.

i can't believe that she isn't..that I won't laugh every time she tries to convince me that Keith Lemon is real, or I won't get little goodie bags to take back to uni, or an amazing sunday roast..or beautiful shoes that she used to buy me...

this is the strangest feeling in the world

[Cathy]

Hi Allie

I am sorry to hear of your Nannie's passing.

Please don't feel guilty about how you feel and think you are heartless. Everyone deals with bereavement differently and it doesn't mean that you love someone any less or miss them any less or aren't grieving. You are.

When my Granny passed away and when my sister passed away, both deaths were unexpected in that they hadn't been poorly long and I felt exactly as you do at the time (and also thought I must be being heartless). It's a huge cliche but time does help.

Lots of love to you and your family

Cathy xx

[PCUK Nurse Jeni]

Hi Allie,

So sorry to hear that you are feeling this way.

I will email you with a reply.

Kr,

Jeni.

[Magickaj]

Hi Allie

So sorry you have been affected by PC at such a difficult time ( studying) and of course, a young age. I lost my Dad last year to PC and whilst everyone is different, I have an idea of how you may be feeling. My wee Pops was given 6 to 9 months and only lived 9 weeks. Apologies if this sounds like a scare tactic- it's just a fact. I think the best thing you can do is be there for the person- talk, hug, love and treasure every moment. I do not envisage that the following months will be easy. However, I loved every chance I had to hold my Dad's hand, hug and kiss his cheek.

Take Care

K