My mum has stage 4 pancreatic cancer - no treatment.

[Autumn]

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]

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]

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

[Justamo]

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]

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]

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]

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

[Guest]

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]

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]

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]

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]

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]

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]

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]

Thank you so much Sandra.xx

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

[Dandygal76]

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

[Guest]

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]

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]

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]

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]

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]

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

[Guest]

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]

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]

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