My Mum - stage IV

[Mymum68]

My mum is dying. According to doctor, who made house call today, she is very near the end. Yesterday the pain increased, we had a terrible night. We could not control the pain, she keept saying she feels like vomitting, but there was nothing left to vomit. Today we received new pain medication, she is now sleeping and seems she is not in pain.

I have just one wish left when it comes to my mum's time on earth: that she would not suffer like she did this night. Please spare us at least this. And please leave her some dignity. We don't ask for too much, do we?

Please keep us in your thoughts and prayers.

[Veema]

Lots of prayers and positive thoughts. There is no need for her to be in pain, that should be kept under control.

Lots of love and strength...it's a tough time and we are thinking of you.

Vx

[sandraW]

Sending you a big cyber ((Hug)) its just all so scary, and we feel so helpless, I hope the drs and nurses now have a treatment plan to keep your lovely mum pain free.

It is worth it, if you do have the time, to speak to the nurses on here, they have so much knowledge about this horrendous disease, and they are so lovely. They might be able to give you some help just in case mum does suffer any more pain. Take care, thinking of you all love sandrax xx

[WifeampMum]

Thinking of you and your dear Mum, and sending my very best wishes for strength and comfort at this ghastly time.

W&M xx

[Proud Wife]

My heart goes out to you, it really, really does. I was very lucky, my hubby passed quickly at the end and without suffering. You are absolutely right, if it's your mum's time, then please let her pass peacefully and without any pain. Hopefully the new medication works and if it doesn't, insist on something else. In this day and age, no-one needs to suffer.

You will be in my thoughts and prayers I promise x

[Mymum68]

I'm calling doctors again, she is in pain. They keep telling me that the medication she has should be sufficient.

Well it is not! I will be haunted by the day I die by some immages I have seen in the last 24h.

We do not live in the UK and have no hospic. When you call doctor to come to your home, you can wait hours (not because of long distance, but I guess they prioritize and if you are dying and they can not save your life, you are behind the ones whose life can be saved). We have public health care only - so no option to pay out of your pocket and get better service. The best pain management is available in hospitals - in so called palliative units. But my mum want sto die at home.

My father and I are doing all we can to keep her comfortable. But every couple of hours my heart break into pieces. I just pray that this suffering will end soon. At this point, death is salvation. I finally understand what they mean by this saying.

[Guest]

Dear Mymum,

I am so very sorry to hear this. It must be heartbreaking for you. I know you may have thought of this but anything is worth a try:

Hot water bottle or wheat bag - something warm to put on the pain site can be comforting

Paracetamol and Ibuprofen can usually be bought over the counter and although they are not strong pain killers they work in different ways, can be obtained from a pharmacy and can be taken with morphine especially at this stage

Changing positions - sitting or laying in a gentle sloping position can help as can walking a little if possible

Breathing - sighing send messages or relief to the brain so sighing and then some gentle measured breathing (counting to 5 or 10 on the breaths in and out) can help.

Some of this may work and would at least give you and her some diversions. Yes, call the doctor and keep calling.

I will be thinking of you and praying that your Mum get some relief soon

Marmalade xx

[Justamo]

Hello MM68.

Thinking of you and praying for you and your Mum.

Love Mo

[Elaine123]

Hi like you I am new to the site and like you I am overcome with thoughts of " what if " but I have learnt from this site that the nature of the disease is such that not many people get enough warning signs to act on any quicker. I understand your turmoil because we are all facing the Unknown. Pete had jaundice and that was how he was finally diagnosed. He had a stent put in and thankfully his levels are dropping over the past two weeks. I find taking it one day at a time is working for me and is keeping me from reading too much into things that are not on the horizon yet. My thoughts are with you....stay strong.

[Mymum68]

We had a relatively calm night, when mum woke we gave her Sevredol and she soon felt better.

We do have morphine tablets (Targinact and Sevredol) and we had to increase the dose in the last three days from 10/5 mg Targinact every 12 hours to 20/5 mg and adding Sevredol every three hours (previously we were not using it). It is becoming difficut for mum to swallow, especially frequent Sevredol, so we are getting morphine patch (hopefully still today), which will hopefully be easier and we will be able to control pain better. Plus we will get abstral sublingual tablets.

Lets hope we manage the pain and mum will pass as peacfully as possible.

[Mymum68]

My mum is now peacful - finally we have the proper pain medications.

I'm actually not sure if cancer will kill her or starvation. She is like skeleton -and only when she sits ups her heart is beating so hard and she feels like fainting.

I read that 80% of pancreatic duct adenocarcionam experiences anorexia - cachexia. I just can't grasp how my mum transformed in two weeks. My poor, beautiful mum. This cancer so is awaful on so many levels.

[Guest]

Dear Mymum,

Please try not to torture yourself with these thoughts. Stopping eating and drinking is part of the process of dying, as much as changes in breathing and falling blood pressure, kidney and liver failure etc. The body is in the process of closing down. It can actually be very painful for people at end of life to swallow and that is why we are advised not to push them too much.

I am so pleased that your Mum has some peace and that you can all get a little rest and I pray that your Mum will continue to go gently and without pain. I wish you strength and courage.

Much love, you are in our thoughts and prayers,

Marmalade xx

[Mymum68]

My mum, the most beautiful soul I have met, is now at peace. She past away today around 10.30 AM.

I'm completely heart broken. I'm glad, that she no longer suffers, but I'm so lost without her.

[Proud Wife]

Hello MM68

I am so very sorry to hear your sad news. I wish you were able to enjoy one last Christmas together - there is never a good time to lose a loved one but this close to Christmas hurts I'm sure, especially when you see other families out and about without a care in the world. I hope you are able to take comfort in that the end was relatively quick. It's the best we can hope for I think when the PC straw is drawn.

My sincerest condolences to you and your family x

[Veema]

So very, very sorry. It's such an awful disease, but though you may not feel it now, you will take some comfort from the fact that she didn't linger and suffer too terribly.

Much love as you face this new future...it's not easy, but it does become more tolerable. Talk about your Mum, it helps lots.

Vx

[Guest]

Dear MM68,

I am glad that your beautiful and brave Mum is now free from pain and flying with the angels but I am sorry for your loss. To lose a parent is a huge thing, they have been our constant support since birth and it is heartbreaking. I hope that you have good memories of a time when your Mum was fit and strong and full of life as I would hate my daughter to only remember me as a sick and emaciated shadow of myself. To cleanse the thoughts of her last days is hard but it would be wrong to let them define who she was. Think of the best days and rejoice that you were lucky enough to have a wonderful mother who loved you and who has left in you a little of herself.

God Bless you and give you peace

M xx

[Mymum68]

I'm completly traumatized by her last couple of hours on earth. She kept saying she could not breath and was agitated. I called doctor who told me to give her more morphine. And than more. Since it did not seem to work I called for the third time. They said they will come home. I did the phine call in the next room, my mum was in pain but speaking normally (ok, her voice weakned in the past days) and being fully conscious and sitting up straight on the bed.

When I returned to the romm to tell that doctor was coming she was laying on bed and tried to sit up - in that moment the facial expression changed - like she had a stroke - she looked lost, like she did not recognize me and stopped speaking. I was so tired and scared I did not get what it means. At this time I was home alone as my father had to go out for an hour and half. She laid down and just stared. I still did not get it... I thought it is from drugs.

Minutes after doctor arrived. Very polite but very young and probably has not seen many people in the last moments of their life. She could not read her pulse. I asked if i gave too much drugs. She said no, you were way bellow the toxic levels. My mum did not respond - not just in terms of speaking, also she did not move at all.

Than doctor asked if we would like to take mum to hospital. I said it was her wish to be at home. But than i said something that will torment me till my last breath. Right there beside my mother dying I said her: I thought we will lose her yesterday. When we moved her from bed to chair to make her bed, she dropped the glass of wather she held in her hands and her had started shaking. My poor, beautiful mother could not talk, but was still there had to hear this. I'm not sure she knew about the event from previous day because when we layed her down again (so when we put her from chair to bed), she immeditally went to her former self. Speaking normally etc.

Doctor than gave me instructions how to give her drugs and left. She told me that mum is probably not reacting because of high dose of morphine received (whic as said I administered according to the info from doctor)and that she would be more allert in three to four hours. She left. Minutes latter my mum moved and made a cross (she was deeply religious). I thought she was just going to rest. I went to cook in the next room. All was very quiet. I looked at her and thought she is sleeping. I let her sleep as she had difficult hours behind her. When i checked again she was still in the same position. This is when i bacame worried. I woke my father, who just went to have a nap and he checked her pulse. She was gone.

In the last hour of my life my mum had to endure me giving her too muc morphine, doctor's visit, and me talking about the state she was in previous day. And than she did alone, despite both my father and I were at home. She did at home but alone. Instead of holding her and telling her for the millionth time how much she's loved, she did alone. I had no clue she was daying. Neither did the doctor. I have never seen anyone passing and I was completly unprepaired. I messed up badly. It hounts me. Did I kill her with drugs? Or at least take her voice away? Doctors say no, but who knows, if they arenot saying this so I would not blame myself. Did she hear as speaking about previous day? It hounts me. I tried soo much to be there for her, but completlly failed in the last stages. When I should just hold her and make her feel my presence. My poor mum! How am I supposed to live with this?

Edited December 14, 2016 by Mymum68

[Didge]

Dear MM68, first I am sorry for the awful journey you have had to endure. It is hard for the patient of course, but so, so hard for the family too. It is completely normal to be traumatised by their last minutes/hours unless everything has gone exactly to a plan, and even then there are often regrets. One thing I have learned is that these last moments are often far more traumatic for those watching. When my first husband died many years ago he was being moved out of the house, where I had assumed he would die, to hospital. He was in a great deal of pain and moaning as they took him out. I was sure he was conscious and could hear everything that was being said as well as feel. It was so traumatic for me, almost unbearable. But when he got to the ambulance, he suddenly said, quite cheerfully "I think I must have blacked out for a while" and it was clear that he hadn't been aware of being carried out the house at all. I therefore think it is quite likely that your mother wasn't aware of what was being said or what was going on until she started speaking normally again. It sounds like at the end she had a very peaceful passing. She was not alone, you were nearby and although you may have not been in the same room, it has been noticed that many people die when their relatives step out of the room for a moment, as if they are waiting to be alone. So do not torture yourself. Sometimes people appear to feel responsible to keep going when their relatives are with them and are only able to 'let go' when they have a moment to themselves, when they don't have to concentrate on the words of their family. That your mother crossed herself seems to say that she was ready to go and at peace at that moment. She didn't die frightened, she died at peace and if she was deeply religious, I am sure she would have had no fear. Her family were nearby. Talk to your mum. If she is looking down on you, she will be doing so with love and not wanting you to feel regret at the way she passed. My partner who died of PC last year had requested that he wanted me and his daughter to be with him at the end. He tried to ask for his daughter but she hadn't wanted to come and I explained that to him and he stopped trying to speak. What he had not asked for was his in-laws and his ex wife to be there! I thought we had everything planned but it didn't go to plan at the end, which is quite common. I forgave myself for not giving him the perfect send off but we can only do our best at the time. You must do the same. x

[Guest]

Dear MM68,

Some very wise words from Didge which you should heed. Your Mum knew she was dying and would not be upset by your words, she probably felt that she wanted to go then too but it is not for us to choose. Morphine can cause hallucinations and other side effects. Once the shutting down process begins it is very difficult to manage the drugs as no two cases are the same and the drugs affect people differently.

Above all your Mum was a woman of faith and she indicated very clearly that she was fully prepared to meet her maker and she had faith that he would fold her in his arms and give her peace. Weep if you must but do not regret because she knew you did your best, its all any of us can do, and find joy that you had a wonderful and loving mother.

Marmalade xx

[sandraW]

I am so sorry you lost your lovely mum to this dreadful disease, but as the Didge and Marmalade have said don't dwell on what happened at the end of her life, try to remember the good times.

You are only a young woman, and you did your very best for your Mum, its obvious by your post how much you loved her.

Death is very scary and here in the UK we don't talk about it enough, I remember being with my husbands grandma, when she passed away, when I was younger, I was terrified, of what I don't know. You have never faced death before and if the doctor didn't know you Mum was about to pass how could you know. You were there with her, not in the same room, but nearby ready to go to her if she called for you, she was very lucky to have you as her daughter.

We all have regrets, about how our loved ones passed, believe me, wish we had done that, said that,

changed that, thought of that, but you mum was surrounded by yours and your Dad's love, in her own home, as she wanted, I think she was lucky. take care love sandrax

,

[PCUK Nurse Jeni]

Hello MM68,

We are very sorry to hear of the passing of your mum.

Please accept our sincere condolences on behalf of the nurses on here, and the wider charity.

The support you have had from the forums members I am sure will bring comfort to you as you read them.

Kindest regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Justamo]

Hello MM68, I'm so, so sorry for your loss. Feeling 'guilty' in some way is part of grief. The guilt is irrational, but it happens to most people so you're not alone.

And please remember that your mum did not die alone. She died surrounded by the love of her family and you did everything you could to make her comfortable.

I can't find words which will make you feel any better right now, but I can promise that in time you will come to terms with all this and the black memories will give way to the happy ones.

Love and prayers

Mo

[Mymum68]

Thank you everyone for your kind words.

Funeral was yesterday, it was a lovely service.

I know I did the best I could and I know my mum knew that.

It is just so hard to comprehend all. In the begining of November we had check-up with oncologist, she had the best tumor marker results ever since getting ill. She was energetic, gaining weight. Than on November 15th we had next chemo session, after this things went down. She turned yellow, got stent in bile duct. On the medical record from this appointment it was written that there were foods remains in stomach - despite the fact that they did not give het to eat 24h before the procedure. CT was not performed (only one CT machine available in local hospital and that was broken)-. They did the ultrasound and only found tumor on pancreas and no clear evidence on tumor on livers (where she had it) let allone anywhere else, After she came home, she went downhill sharply - vomitted brown fluid, could not eat etc. She died in 2 weeks. I keep thinking that perhaps she had blockage in duodenum and that if stent had been inserted she would be still alive. Obviously I'm not medical expert and it could all be wrong - but all I read shows that she had duodenum blockage as well. I have no clue why did they not check that when she inserting stent in bile duct. One week after comming home she was to weak to go through any kind of procedure. This thout together with her last hour tortures me. I feel I faild her and she could still be with us. But if you take your loved one to hospital, you do expect that they check what is needed - specially since they saw that there were food remains in stomach. It hurts beyond words

[Justamo]

Dear MM68

I'm sure you have read lots of threads on here, and you will have heard that we all think this awful disease is a roller coaster. One day everything is fine, the next day it all comes crashing down around you. Torturing yourself will not bring your lovely mum back and it will hurt you and your loved ones. You did everything you could for your mum.

I'm glad the funeral service was lovely - that will be a big comfort to you. Why do you think you failed your mum ? As you say, you are not a medical expert and you did your best. Perhaps when you feel a bit better you could speak to one of her doctors and ask them to explain all the decisions that they made.

Your mum is at peace now. Try to take some comfort from that.

With love and prayers

Mo

[Veema]

You didn't fail your mum. Pancreatic cancer is a horrible beast and notoriously difficult to treat and nigh on impossible to be cured from...I know there are those which have been, but they, in my opinion, have been extremely lucky.

My husband died in September and I often think that there was something I could have done, should have done to prolong his life, but that might only have been for a few weeks or months and who knows how poorly he would have been during that time. I now hold it in my heart that he died when it was his time, he didn't suffer too much and the outcome would have been him dying anyway, regardless of how much I could have fought for him.

I'm pretty sure that when they put the bile duct stent in that they go through the duodenum to get to the right place, so the camera on the end of the scope would have shown if there was any blockage there.

Your emotions are very raw at the moment and although it is something you will never, ever get over, you will stop blaming yourself and understand that there was nothing more you could have done. Your mum will have known you were there, she possibly waited until she was alone to die, and she will have known that you tried your best and that is all anyone can do.

Please keep talking about her...tell us something about her, something before she was ill, share your memories and that helps to keep them alive in your heart.

Much love

Vx