A forum for family, friends and carers of pancreatic cancer patients

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Coxylewis
Posts: 5
Joined: Fri Feb 12, 2016 6:38 pm

Mum diagnosed with stage 4 recently

Postby Coxylewis » Wed Feb 24, 2016 12:31 pm

Hi coxylewis here, my lovely mum was diagnosed with stage 4 on Christmas Eve. It is inoperable
And she was offered chemo to help with symptoms. Unfortunately she only had 1 session as she's not eating at all now or taking much fluids. She's been admitted where she's having anti sickness
Medication dripped in via tummy. Also potassium and sodium drip. Very frustrating she has stopped her soups, and also
Her ensure drink. Now palliative care team looking at feeding tubes, which is scaring us all. Don't know if this will be permanent as they are still deciding. Unfortunately she is also in Ireland so I'm popping over to see her when I can. Feels like we're all in a nightmare and not sure what's going to happen next. Sorry for moan and if anyone reads this thank you feel very isolated .

alimc77
Posts: 17
Joined: Mon Aug 03, 2015 12:31 pm

Re: Mum diagnosed with stage 4 recently

Postby alimc77 » Wed Feb 24, 2016 12:42 pm

Hi coxylewis, welcome to the forum. I rarely post but reading everyone's stories has really helped me, and the advice you get on here is great. My dad also has stage 4 inoperable PC, diagnosed last summer. He had 12 folfirinox sessions then switched to gem/abraxane but neither of them worked so all treatment has now stopped. When he was on the folfirinox he hardly ate, wouldn't touch the ensure drinks, all he wanted was ice lollies and boiled eggs! since stopping the chemo his appetite is slowly coming back, he's now on creons as well. It must be hard being far away from your mum, sorry not much help but just so you know you're not alone.

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

Re: Mum diagnosed with stage 4 recently

Postby sandraW » Wed Feb 24, 2016 12:45 pm

Hi Coxylewis,
A very warm welcome to the place where no one wants to be but where you will get lots of help, advice
and obviously much needed support.
Your poor Mum, at least it sounds as if she is in the right place and with the palliative care team involved she should get lots of help.
It can't be easy for you being away from her too, can you get over to see her very often?
I personally don't know anything about feeding tubes, perhaps you could give the nurses on here a ring, they are very approachable and are very knowledgeable I am sure they could give you lots of information.
Don't feel alone we are all going though or have gone through all the worries and feelings you are going through now, please let us know how your Mum is doing, take care sandrax xx

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

Re: Mum diagnosed with stage 4 recently

Postby Didge » Wed Feb 24, 2016 12:58 pm

Hello Coxylewis. I am not familiar with using feeding tubes. I imagine they would only consider that if the reason your mum is not eating or drinking is a temporary problem which they hope to resolve and then resume treatment but the nurses will be able to advise you better. Best of luck, it must be hard not being near, Didge x

Coxylewis
Posts: 5
Joined: Fri Feb 12, 2016 6:38 pm

Re: Mum diagnosed with stage 4 recently

Postby Coxylewis » Wed Feb 24, 2016 3:19 pm

Thank you everybody appreciate responses.

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

Re: Mum diagnosed with stage 4 recently

Postby PCUK Nurse Jeni » Wed Feb 24, 2016 5:30 pm

Hi There Coxylewis,

As others have said, welcome to the board, although not in good circumstances.
My name is Jeni, and I am one of the nurses working for the charity.

I am very sorry to hear about your mum and the issues she has had post chemo. Is there a chance of giving an alternative, less toxic chemo, do you know? She was obviously dehydrated, if she is having salts replaced, so you might find she picks up after this, as dehydration can cause big issues.

If they are thinking of a feeding tube, do you know whether this is because she has a blockage at all? Could be a question to ask?

Please do email us on support@pancreaticcancer.org.uk should you need us.
Kind regards,

Jeni, Support Team.

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

Re: Mum diagnosed with stage 4 recently

Postby Proud Wife » Wed Feb 24, 2016 7:04 pm

Hi Coxylewis

Again, welcome to the place where no-one wants to be. I'm so sorry to hear about your mum. Although it's my hubby that has PC, I lived abroad when my Dad had stage 4 cancer so I know what it's like when you can't just jump in a car and pop over to check on your mum. Yes, unfortunately it's a living nightmare but as everyone has said, there's no need to feel isolated on here. And you certainly don't need to apologise for anything you say, we all know and feel your pain I'm afraid. i really hope they can make your mum more comfortable really quickly.

All the best xxx

OC78
Posts: 1
Joined: Sat Mar 19, 2016 9:32 pm

Re: Mum diagnosed with stage 4 recently

Postby OC78 » Mon Mar 21, 2016 8:38 pm

Hi Coxylewis

I am new to this forum and this is my first post - but felt like I had to write a reply to you, so you know you are not alone. Our situations are very similar. My mum was diagnosed mid Jan, she has only been able to have one chemo session and has been told she is too weak for any more as she isn't eating at all and keeps being sick. She is in hospital on drips and seems to be going down hill very rapidly. Also like you she lives abroad (France) so it is not easy to get over and be with her. I worry about my dad being the only one there for her and have been over a few times but I have two small children so can't go over for long periods of time.
I understand your pain and frustration and know how hard the situation is and my heart goes out to you.

Best wishes
Xx

Coxylewis
Posts: 5
Joined: Fri Feb 12, 2016 6:38 pm

Re: Mum diagnosed with stage 4 recently

Postby Coxylewis » Tue Apr 19, 2016 11:18 pm

Hi all that responded to my original post, unfortunately my lovely mum passed away today from pancreatic cancer0. She went 4 months after diagnosis of this wicked disease. She we looked after by a fantastic hospice in Ireland who were amazing, she was in no pain and her family were with her. Thanks for support

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

Re: Mum diagnosed with stage 4 recently

Postby Proud Wife » Tue Apr 19, 2016 11:32 pm

I am so very sorry to hear about your mum but very relieved to hear she was not in pain. 4 months is no time at all.

Wishing you strength to cope during this very difficult time.

Thinking of you xx

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

Re: Mum diagnosed with stage 4 recently

Postby PCUK Nurse Jeni » Wed Apr 20, 2016 11:11 am

Hi Coxylewis,

It is with sadness that I read your post about your mum's passing. So sorry to hear this news.

On behalf of all the nurses here at the charity, and also, on behalf of the wider charity, I would like to offer our sincere condolences to you and your family at this sad and devastating time.

It is so good to hear about the positive experience of the hospice, and that your mum was pain-free, surrounded by her family - there is not much more a person can hope for at such a sad time.

Kind regards,

Jeni.

Pancreatic Cancer Specialist nurse,

Support Team.

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

Re: Mum diagnosed with stage 4 recently

Postby sandraW » Wed Apr 20, 2016 11:27 am

Hi Coxylewis,
So sorry to hear you have lost your lovely mum, but its nice to hear her family were with her, and that she had no pain, also good to hear that she was so well looked after in the hospice. I am sending love and strength to you and all her family and friends at this very sad time, please try and take care of yourself too love sandrax xx

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Mum diagnosed with stage 4 recently

Postby boa » Wed Apr 20, 2016 4:18 pm

Very sorry to hear your news but so pleased about the good care in the hospice and that the family were with her.
Catherine

Coxylewis
Posts: 5
Joined: Fri Feb 12, 2016 6:38 pm

Re: Mum diagnosed with stage 4 recently

Postby Coxylewis » Sat Oct 15, 2016 9:29 am

Hi everyone. I haven't been able to come back in here until recently. Have been reading
And keeping and keeping up to date. It has been a hard 6 months since my lovely mum passed away. We have had a birthday which was awful and ne living in a different country has not helped. I'm going home in half term to see my family and visit her and dads grave, I think of her every day but know she's no longer in any pain and with my dad. I hop with time things get easier I think being able to come back on here means it is. Thank you for your kind messages and hope your all doing ok too.
For now bye but will stay in touch