A forum for advanced pancreatic cancer issues

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Mymum68
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Sun Dec 11, 2016 6:08 pm

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.

Marmalade

Re: My Mum - stage IV

Postby Marmalade » Sun Dec 11, 2016 8:29 pm

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
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: My Mum - stage IV

Postby Justamo » Sun Dec 11, 2016 10:21 pm

Hello MM68.

Thinking of you and praying for you and your Mum.
Love Mo

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: My Mum - stage IV

Postby Elaine123 » Mon Dec 12, 2016 7:20 am

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
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Mon Dec 12, 2016 8:15 am

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
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Mon Dec 12, 2016 7:31 pm

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.

Marmalade

Re: My Mum - stage IV

Postby Marmalade » Mon Dec 12, 2016 9:17 pm

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
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Tue Dec 13, 2016 4:51 pm

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
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: My Mum - stage IV

Postby Proud Wife » Tue Dec 13, 2016 6:39 pm

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

Re: My Mum - stage IV

Postby Veema » Tue Dec 13, 2016 8:02 pm

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

Marmalade

Re: My Mum - stage IV

Postby Marmalade » Tue Dec 13, 2016 11:36 pm

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
Posts: 25
Joined: Mon Oct 31, 2016 9:48 am

Re: My Mum - stage IV

Postby Mymum68 » Wed Dec 14, 2016 5:44 am

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?
Last edited by Mymum68 on Wed Dec 14, 2016 2:41 pm, edited 2 times in total.

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

Re: My Mum - stage IV

Postby Didge » Wed Dec 14, 2016 9:08 am

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

Marmalade

Re: My Mum - stage IV

Postby Marmalade » Wed Dec 14, 2016 10:03 am

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
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: My Mum - stage IV

Postby sandraW » Wed Dec 14, 2016 9:31 pm

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
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