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

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Dandygal76 » Fri Oct 21, 2016 2:26 pm

Dearest Autumn, I am so sorry that you, your family and your lovely mum are going through this. I know that many patients at this stage realise that quality of time is most important and I for one would not be bothering with that round trip to the hospital. You should read Marmalade's thread and I recall they made the same decision in prioritising these sometimes arbitrary appointments.

It must also be truly awful to see your mum in pain and I do believe that you need to keep going back to nurses, doctors, outreach and anyone who will listen until they truly address this (in balance with what your mum wants). I have no where near the same experiences of others on here to advise you but I wanted you to know I am thinking of you and care deeply that you all find the strength to allow your mum to pass peacefully.

Much love to you all

DG

Marmalade

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Marmalade » Tue Oct 25, 2016 4:33 pm

Hi Autumn,

I have been away for a few days but checked in to see how things were going. Confusion can be caused by infections but also by medicines and by lack of nutrients. The body never stops trying to live so starts to shut down non vital functions to conserve energy for systems that are needed to keep the vital organs going.

I'm so glad you were able to give Mum a bit of relief with the light massage, every little helps. We had liquid Oramorph for Louis and we gave very small doses of about 2.5ml up to 5ml depending on how much pain he was in and if it was bedtime or not. The small dose was useful if he wanted to be more alert. We also gave paracetamol and Ibuprofen (the latter only after his heart meds were stopped) as these drugs work in different ways to each other and to morphine and can be taken with it. Combinations seem to work better than single drugs and having a good experienced GP or hospice doctor is essential as simply increasing a drug that is not working is not always the best course. Have you been able to dispense with the heart meds yet?

Your Mum is trying to be independent and you all helping her to do that is so lovely. Something I didn't know until quite late on is that you can hire stair lifts almost by the week and they are put in and taken out very quickly without damaging the walls. This would give your Mum a bit more room to move about in and let her get herself up and downstairs. Speak to your local hospice who will know who to go to. Acorn are quite a well known firm. If cost is an issue for your parents them maybe some of the family who say "let us know if we can do anything" would like to help with the cost.

I think you can also help by making her room as non medical as you can, get the hospital bed if she will try it, they can soon take it away if it is not for her but makes sure she has a comfy chair and footstool (you will need this if you have to sit with her later) a TV, radio, lots of pillows, photos and a bedside lamp that can be dimmed. Somewhere near a bathroom is ideal but clear as much other stuff out as you can so that there is room for a commode or walking frame later. We sold these items to Louis on the basis that they allowed him to do things for himself and help us which made him feel he was not a burden or at least less of one. I got them in along with some big pads for the bed and two comfy fitted terry sheets with waterproof backing as a mattress covers (Louis did not like the hospital bed so we managed with a 3'6" single, hence the waterproof mattress covers, these are not needed with a hospital bed), throwaway gloves and lots of smallish towels were also things that were very useful. Tell Mum you have all these things arranged so that if and when she needs any of them to keep her independence or save work for carers she only has to ask. You can then encourage her from time to time to give things a try.

I hope your GP has discussed the care plan with your Mum and with you and has given you prescriptions for the "just in case drugs" so that if and when your Mum needs more help with the pain the drugs are in the house ready for the District Nurses. If they never have to be used so much the better but if it happens at a weekend or at night it will make getting your Mum relief much quicker and simpler.

Sorry to go on about preparations but it allows you to get used to the idea and understand some of the possible scenarios so that you can be calm when they happen, if they happen.

If I can be of any further help or support off forum please ask support for my email address and I will do my best for you.

Much love, Marmalade xxxx

PCUK Nurse Rachel C
Posts: 61
Joined: Wed Jan 14, 2015 4:25 pm

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby PCUK Nurse Rachel C » Fri Oct 28, 2016 11:17 am

Dear Autumn,

I just wanted to say how sorry I am that things are really difficult at the moment and that we are thinking about you.

Also, apologies that you didn't receive my original email on the 18th October. I have tried to re-send it again today, so I hope that you dont mind? I'm also glad that you called through and got some good ideas.

Do be in touch if needed,

Kindest regards,

Rachel

Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Autumn
Posts: 9
Joined: Fri Sep 30, 2016 10:10 pm

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Autumn » Fri Oct 28, 2016 8:27 pm

Thank you all for the kind words and support.
Sadly my mum died on Wed 26, it was peaceful and quick and she didn't suffer for long.
Love to you all.x

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

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby sandraW » Fri Oct 28, 2016 9:05 pm

Autumn,
So sorry to hear you have lost your lovely Mum to this horrendous disease, I am glad to hear that she didn't suffer. sending condolences to you and all the family take care sandrax xx

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

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Justamo » Fri Oct 28, 2016 9:09 pm

I'm so, so sorry Autumn. I wish I could find some words of comfort - you have done everything possible to make her comfortable and I'm glad it was peaceful. In time the memory of these last couple of weeks will fade and it will be easy to recall the happy times. It will take time, but I promise it will happen eventually.

My best love,
Mo

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

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Veema » Sat Oct 29, 2016 12:53 pm

So sorry Autumn...it's a harsh, cruel disease.

Keep posting honey...it really does help and there's getting more and more of us who have been through this unfortunately. I am pleased that it was peaceful and quick...much better for everyone, especially your mum.

Huge cyber hugs.

Vx

Marmalade

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Marmalade » Sat Oct 29, 2016 7:41 pm

Oh Autumn, I am sorry sorry to hear about your Mum. She is flying with the angels now and beyond pain bless her. It's a terrible thing to lose a parent and will take time.

We are all here if you need us and will be thinking of you and your family. M xx

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

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Dandygal76 » Sun Oct 30, 2016 2:10 pm

I am very sorry Autumn. I am glad your lovely mum did not suffer and you know we are all here for you when you need us. Much love. x

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby PCUK Nurse Jeni » Mon Oct 31, 2016 10:44 am

Dear Autumn,

So very sorry to hear the news of your mum's passing, in such a short time.

On behalf of the nurses, I would like to extend our deepest sympathies to you and your family at this sad time of loss.

I am sure that it is a comfort to know that it was peaceful, and that your mum did not suffer too much - and I hope that you all managed to be there with her.

Thinking of you,

Jeni.
Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Autumn
Posts: 9
Joined: Fri Sep 30, 2016 10:10 pm

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Autumn » Wed Nov 02, 2016 9:38 am

Thank you all so much, it has been very comforting to read your lovely words and means a lot.
You've all been very kind and I'm so glad I found you, even though briefly, as it is always so much easier to be with people who understand.
Love to you all.xx

Marmalade

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Marmalade » Wed Nov 02, 2016 11:01 pm

Any time Autumn, there is always someone around. I hope you and the family are managing to cope at the moment, its such a huge thing to lose a parent and different for everyone. Don't you worry at all if you want to drop by for some company at any time.

Much love M xx

Autumn
Posts: 9
Joined: Fri Sep 30, 2016 10:10 pm

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Autumn » Thu Nov 03, 2016 7:00 pm

Thank you so much Marmalade...you gave me so much great information.
It is difficult because it happened much quicker than we thought and dad is devastated. Good that mum didn't suffer though which is what is important. Xx

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

Re: My mum has stage 4 pancreatic cancer - no treatment.

Postby Veema » Thu Nov 03, 2016 10:22 pm

That absolutely is what is important and your dad will soon gain some comfort from that fact.

I know how you feel about it being quicker than you thought as that is what happened for us, and I do wonder if there was something I could have done differently and he may still have been here...but then the overall outcome would have been the same, regardless of when it happened and at least I know that he didn't suffer for too long.

Keep talking about her, it really does help.

Vx