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

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

My mum has stage 4 pancreatic cancer - no treatment.

Postby Autumn » Sun Oct 16, 2016 12:33 pm

Hello everyone.
Like many others I've come to this forum dazed and confused after my 84 year old mum's recent diagnosis. She was told two weeks ago that she has stage 4 pancreatic cancer which has spread to her liver.

In March this year she was given a prognosis of 6 months at worst and a year at best for an untreatable heart condition that she has. That was a terrible shock for our family as mum has always been so strong in body and mind, age never making a difference, but to now have this cancer diagnosis 7 months later is a double blow.
Mum has awful back pain, can't eat much and is so, so tired, which is not her at all. She cannot have any treatment due to her heart condition, so we're quite limited in what we can do.
She didn't like the morphine as it made her confused and a bit dopey. She's trying again now on slow release tablets but desperately wants to stay with it and in control as much as possible.

Does anyone have any suggestions of anything that might make her more comfortable? We've added olive oil and cream etc to foods (thanks to what I read on here) to increase calories. She has the energy drinks (but doesn't really like them) and her food preferences change frequently, which is understandable as the digestive system gets more blocked.
My dad is there but he is very infirm himself and mum has always looked after him! I, along with my sisters are taking it in turns to go and stay as they live away from us in a remote area.

A Macmillan nurse came but we didn't know any more than we did before after she'd left, which was disappointing.

Is there extra help we can get to help them at all?

Thank you.

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

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

Postby Veema » Sun Oct 16, 2016 2:32 pm

You should definitely be able to get district / community nurses to help. Have you got a local hospice as they are also there to help, not just in end of life situations. Your GP should be able to point you in the right direction. I also found Macmillan weren't what I expected them to be.

Her pain should also be managed better...there are alternatives to morphine. The eating will be what it will be I'm afraid...it seems to be the way that PC sufferers have trouble eating...is she taking creon? If not, might be worth getting some...ask for some omeprazole or lansaprazole to go with it.

Vx

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

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

Postby Veema » Sun Oct 16, 2016 2:34 pm

Scandishakes are a much more palatable food supplement, milkshake sort of thing, but nicer tasting than ensure or fortisip.

Justamo
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

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

Postby Justamo » Sun Oct 16, 2016 3:17 pm

Autumn, what a nightmare for you. My husband is 84 and was diagnosed at the very end of August, although I had guessed what was happening and had been watching and reading this forum for some weeks beforehand. Peter isn't anything like as bad as your Mum; he was scheduled to have a Whipples operation (despite his age) but his general health wasn't good enough. He has an appointment to see the surgeon again at the end of this month.

The best thing you can do, apart from picking up tips on this forum, is to phone our lovely PCUK nurses' helpline on Monday morning. They may have read your posts by the time the helpline opens and they will be able to advise the best course of action for your Mum.

Veema has lots of experience and has already shared a couple of ideas with you, and I'm sure other forum members will come forward with their tips too. Is your GP being helpful ? Is there a Palliative Care Team attached to your local Hospice ? You really do need professional help at this stage.

I am sure the PCUK Nurses will give you helpful advice and guidance, and of course we will all offer as much support as we can through the forum.

With love, Mo

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

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

Postby Autumn » Sun Oct 16, 2016 4:40 pm

Thank you so much for all your suggestions Veema, I will ask about those tomorrow.x

Thank you Mo, for all your lovely words. I am so sorry to hear about your husband and hope there is something the surgeon can do now.x

Unfortunately, the nearest hospice is over 70 miles away and mum just doesn't want to travel. She sees a district nurse every day because of a nasty ulcer on her leg that needs dressing, ( had it for over 20 years!)so that's a good thing but mum is good at hiding how she is from everyone.

I will definitely be ringing the PCUK helpline. Thank you both for getting back to me. xx

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

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

Postby Proud Wife » Sun Oct 16, 2016 6:05 pm

Hello Autumn

I am so sorry to hear about your mum, as if her heart condition was not enough. My husband had really bad back pain too, so much so that he couldn't lay in his bed and had to sleep sitting upright at the time of diagnosis and in his last weeks. Her pain must be better controlled - we were told that if you kept on top of pain it was easier to manage and I'm afraid as the tumour may grow, it could press further on spinal nerves and that's not pleasant. I am sorry to be so blunt but I would much rather tell you as is, so that you can get the help your mum needs and she doesn't have to suffer. We were able to do just that and although hubby passed far too early, he really didn't suffer and for that I will be eternally grateful.

As everyone else has said, give our wonderful nurses a call in the morning, they are amazing.

Good luck xx

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

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

Postby Autumn » Sun Oct 16, 2016 8:05 pm

Thank you Proud Wife, blunt is always good and it's better to know and be ready than caught out. The not suffering is so important. I'm so sorry that you lost your husband so early, such a terrible thing to happen but as you say, the not suffering is such a blessing. Xx

Marmalade

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

Postby Marmalade » Mon Oct 17, 2016 10:05 am

Dearest Autumn, what a blow for you all. Please do contact the nurses as they will be a tremendous help. Does your Mum have a hospital bed? I know lots of people get relief with them as they can be adjusted to help her get comfortable. It doesn't work for.all but can be ordered and in a day via palliative care team.

We found that a hot water bottle, not too full and wrapped in a towel helped us or a wheat bag. It can be comforting while you wait for pain killers to work. We took my husband off some of the heart melds so that we could use a better range of pain killers. We do always try to be honest on this forum so I feel I can say that we felt quality of life and pain relief were more important than keeping going in pain. This is for your Mum to decide but perhaps she should have a chat with the GP who will advise.

I am so very sorry that you are on this journey but hope that you will find support and comfort here with us.

marmalade xx

Justamo
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

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

Postby Justamo » Tue Oct 18, 2016 9:02 am

Hello Autumn.

I woke up very early this morning and you and your family came to mind. How is your Mum ?

Love
Mo

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 » Tue Oct 18, 2016 3:11 pm

Dear Autumn,

Welcome to the forums, although I appreciate its not the place anyone wants to be. Its good, however, that you have felt able to post, and I am sure you will find this a very supportive community to be part off. My name is Rachel, and I am one of the nurses working for the charity.

I am very sorry to hear about your Mums recent diagnosis of pancreatic cancer and also that she is having some difficulty with controlling her back pain. Autumn, if you don't mind and as there appears to be several points to address here, I will email you separately. I hope that this sounds reasonable? I hope to email by the close of business today.

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 » Thu Oct 20, 2016 4:43 pm

Thank you so much everyone, what a truly lovely group of people you are...so great to have you here. I'm sorry that I haven't been on in the last few days but I was staying with my parents and it's quite intense as I'm sure you all know.
Thank you again for these thoughts and ideas.
The hospital bed sounds such a good idea marmalade especially now my mum's poor legs are swelling badly and leaking. One is ulcerated and she can't put it flat. The wheat bag and hot water bottle is such a great idea too which I can't believe I didn't think of before! Thank you. Yes, quality over quantity is definitely the way. Xx

Oh bless you Mo, thinking of me and my family when you have your own worries. How is your husband?xxx

That is so kind of you Rachel but I don't think I got an e mail from you...I will check again. X

My mum seems to be going down hill quite quickly. She has started taking the oral morphine tablet just at night now, which is something but she is falling asleep every time she stops talking or doing something. She is still determinedly getting up and dressed in morning and coming downstairs...but struggling to get back upstairs (although she won't say so!).
I found her asleep, sitting on side of bed, head on knees the other night at 1:30 am. I gently woke her and she was very confused (not like her at all) and started saying stuff that made no sense, but I went along with it and laid her back in bed, she slept immediately but with one leg (ulcerated one) raised.
She asked if I could rub some cream on her back which seemed to be such a relief for her although just medium pressure was uncomfortable.
I asked the district nurse for any more information and apparently the cancer is in mum's ribs too....I didn't know that.
My mum was supposed to be going for a cat scan but has said she doesn't want to now...she is just too tired and it's a 160 mile round trip to the hospital. I think maybe she doesn't want to know either.
Sorry to ramble on, I know you are all bravely coping with the same. Lots of love to you.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 Oct 20, 2016 10:26 pm

I think your mum is very wise not wanting to traipse to the hospital...sometimes it's kinder to just make the most of the time you've got without all the medical interventions.

My husband was confused in his last few days...it was apparently because his sodium was low, so it might be worth asking the GP about that...he was swollen too, both his legs and he had a large ascites (fluid in the abdomen).

I hope she can be kept comfortable...Lots of love and strength.

Vx

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 21, 2016 9:02 am

Thank you Veema and that's a good point about the sodium, I will mention that to district nurse.
We haven't seen a doctor since the first diagnosis...!
You are so good to be on here helping people after losing your husband to this awful illness.

How are you?xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

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

Postby sandraW » Fri Oct 21, 2016 11:56 am

Autumn,
I am sorry to hear you mum is struggling at the moment, this disease is so horrific.
Swollen legs are so uncomfortable, I hope you can get a hospital bed soon as it will make it more comfortable for her to have her legs raised.
I hope you get the email from the nurses, don't be afraid to contact them they know what drugs will be the most effective to help mum get relief, and if she can be comfortable it will really help.
sending love and strength to you and your famiy at this difficult time sandrax x

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 21, 2016 1:42 pm

Thank you so much Sandra.xx

I spoke to one of the lovely nurses this morning and got lots of great advice.x