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Dear PW. Praying hard for you all at this difficult time. We like you ventured into unknown territory and it makes it so hard to bear. It appears that the final journey for them can be so different. He will only leave when he is ready and when the time comes I sincerely hope it is peaceful for you all. You are one very strong lady who has supported so many of the forum family including me. Now it is our time to help you too. Much love Annette xxxxx

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Dear PW, so sorry to read you last few posts, you have been my talisman since I started reading posts on this forum as there have been so many similarities and you have done so well. My husband is also multilingual, another coincidence. The more I read the luckier I feel that we are firmly in palliative care by the hospice at home team and the more angry I get that you are in this position.


The approach is very different to the experience you two seem to be having. I did a a course organised by the hospice team for carers that dealt with all the issues you are now facing, what one might expect and what could be done to help if anything could. Techniques that can be used to help with panic and breathlessness and so on. It's not much but it' something. I'm not saying I am prepared for anything because no one can be, but it's shocking that you are left reeling like this not knowing what to expect. My heart goes out to you and your husband. I hope that if this is the final furlong, it is peaceful. Much love M xx

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Dear PW, You explained it just the way I would have, of course you don't want to loose him, but you don't want him to suffer either, its not just the pain its the indignity (sorry if thats not the right word) of it all. They fitted Trevor with a catheter on the Friday, they said it would be easier for him, he was eating small amounts right up to the Sunday/Monday, he MADE them get him out of bed on the Monday night so he could open his bowels on the toilet When I said to the nurse about his iron will and determination, her reply was "Yes but he struggled to walk" according to them he should have been dead 2 days earlier, I really really wanted to smack her!!

Strangely it doesn't upset me talking about it, because I realise just how lucky we were, just try and rest as much as you can, love sandrax xx

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Proud Wife

How is Louis doing Marmalade? Don't have the best Internet access here at the hospital And can't find your thread. I think about you daily And love to hear what Louis been able to get up to!


It's so weird how we are all in the same boat but every one with pancreatic cancer has different experiences. Catheter is next step. However, he's not eaten for weeks now so Trevor did really well.


I have ever had a terribly emotional day. I have not stopped crying from sheer helplessness a day lonliness. I'm struggling to decide if a hospice is the right place for him and the person I normally make decisions with is hubby. We've always made joint decisions now I have to do that alone. So so hard xx

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PW if I was you I would opt for the hospice but obviously be guided by what the doctors say, it is so hard making these decisions, but that is what we have to do, anything we can to make it easier for our loved ones. love sandrax xx

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Proud Wife

Problem is he's not well enough to move at the moment. He's so very breathless which then makes him panic which makes him more breathless.


I hope tomorrow he's more coherent although my heart tells me he's just absolutely exhausted so there's probably slim chance of that. He doesn't even have the energy to swallow liquid.

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Dear PW,


Please don't worry about us, Louis is ok today, in fact, one of his better days and I am thanking my lucky stars that he is well enough to come downstairs and have a little stroll in the garden. We do everything in stages, get downstairs, rest on the sofa, stroll in the garden rest on the bench and so on. Like I say, a good day for him. Yesterday a very kind lady hairdresser came and cut his hair as my attempts were pretty poor and he hates looking scruffy. She told him he looked like Cary Grant and made us all laugh.


I can't speak to highly of hospice care, either at the hospice or in our case, hospice at home. A well oiled team that includes specialist nurses, night time carers, we don't need carers yet but they are there for the final fling as Louis calls it, district nurses and our fantastic GP. The hospice also have their own doctors. The approach is all about comfort and quality not quantity. They have technique called the calming hand for helping with breathlessness and panic, it involves holding the thumb between the other thumb and forefinger and pressing just below the nail. I think this is an accupressure point but it provides some distraction at least. Next is an instruction to sigh out which makes the shoulders drop and makes way for the intake of breath. Sighing also sends messages to the brain which indicate relief apparently so sighing out and breathing in slowly slows the heart rate and eases the breathlessness and panic. Louis is sceptical but it does seem to work. Louis has heart problems so experienced heart pain sometimes and this also works at those times. I wish you luck PW, don't mind about the crying just do whatever suits you. Much love xxx

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PW, so sad to read the position you find yourselves in. My heart aches for you both. I think the difference between hospital and hospice is that in the hospice they will offer Hubby choices in his care if he is able. When Stewart was in the hospice the doctor sat with us and asked Stewart what he wanted from them. He told them he was ready to go and wanted to be pain-free. They said he could take his medicines or not, get up or not, eat and drink or not - whatever he felt like doing. They asked if he got another infection (and he had a lot in the last 3 months) did he want to be treated, he said only enough to keep him comfortable (as opposed to life prolonging). It seems all PC patients get numerous infections which are difficult to source. Stewart was admitted 3 time with temperatures of 40 degrees, treated with antibiotics and discharged, but no source was ever identified. Several more time he was treated at home by the GP when he had symptoms but temp not as high. Stewart did not eat or drink for the last 12 days of his life. Had a catheter and continued to produce urine in smaller amounts obviously. I cleaned his mouth every 2 hrs with a little pack I was given and coated it in some gel to keep it comfortable. He also showed no end of life signs. Every morning for 11 days I texted his mam and sisters and said "no change". On the 12th day I sent the messages at 07.15, "no change", then at 09.15 he took 2 breaths which sounded different and they were his last. Stewart was also a strong, intelligent man and I knew he hated being ill. Like you I wanted him with me as long as possible, but watching him suffer so much was torture. I know you will cry as you sit with him and that alone is exhausting. My thoughts are with you both. xx

Linda G

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Proud Wife

Brilliant Marmalade, just brilliant you had a good day.. That put a smile on my face. I will try the sighing with him if I can. But I see the alien in his tummy and it must be compressing his lungs. It's a rock hard thing. I HATE it with a vengeance. It must have grown so quickly. I believe that's what is making him breathless. The alien will haunt me for years to come.


Linda, it was very helpful to read about Stewarts last days. If my fuddled brain remembers, you haven't posted his story as of yet. The food I can understand but 12 days not drinking? Forgive me if you have said before but was he put on a drip? How could he survived so long without liquid? On what day did he last talk to you? I was scared to come back to my room tonight for fear that I won’t ever hear his voice again. The reality is beginning to sink in today just how little time is left. I changed the wallpaper on my mobile to a picture of hubby 8 months ago when he looked like hubby as the man lying in bed now looks different.im scared I will forget what he looks like. I could see the bones in his legs today. Skeletal but with a massive swollen tummy.

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Proud Wife

DG if you come on line, let me know how your dad's sickness is. I know you have your own thread but with limited Internet access, it's easier for me to chat with all of my wonderful forum family on one page currently x

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Hi PW,

I am so sorry you are going through this it is so hard. My Mum was in the hospice for 1 month I truly believe she was never ready to go! The week before she went into hospice she had pneumonia and was in hospital she never wanted to be there. She was transferred to hospice on Christmas Eve and died on the 22nd January! She was very with it in the hospice at first and was eating and drinking. Her stomach and legs were very swollen and within a couple of weeks she could hardly move. She was told she would never walk again! She slowly got weaker but was eating until the day before she died. She slept more and didn't talk very much. I stayed with her the whole day until 11pm at night . She was sleepy but spoke a little. That was the last time I spoke to her. I was called in at 3 am and she was unconscious. She never spoke to me again and slowly she faded away. Her eyes were open but they slowly went black. Her breathing changed and at 1130 am she died.

I'm sorry it is such an awful post and I'm sure everyone is different. She was peaceful and not in pain.

I miss her every day and I can't believe what she went through. It will haunt me forever.

I am thinking of you and I'm sending you love and strength.

Love Sue x

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Hi PW,


I just wanted to add our experience with my Dad not receiving any fluids, he survived 2 weeks after they stopped all fluids, I had assumed he would not be able to live that long without fluids but the doctor explained that as my Dad was sleeping a lot of the time that he body needs less to live off of.


My Dad was very peaceful for most the time at the hospice, the second week he did experience confusion which got worse as the week went on, he struggled to speak, I think sometimes he knew what he wanted to say but couldn't get the words out. He slipped fully into unconsciousness one night and at around 6.30 the next evening he slipped away. He had been generally very peaceful that day, he looked comfortable, his breathing had an obvious change about an hour before he died, his breaths got further apart until he just didn't take another breath.


Thinking of you at this horrendous time.

Paige

Xx

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PW, I hope I still have a lot of time to update you all over my dad and so please do not concern yourself with us. You concentrate on you guys. How is hubby this morning? I would post more to you but I feel wholly unqualified because I have never lost anyone close to me. You have some great support on this thread and there is nothing I could add to the kind words you have received. I am thinking of you and sending you more hugs. x

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So far today, he is a lot brighter! Had a few kisses! He's resting up at the moment. I take a lot of comfort from your stories, it helps me to understand what's going on.


The loveliest part of this journey is that I feel you are all on it with me. My forum family are just wonderful. Thank you from the bottom of my heart. Truly xxx

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PW glad your husband is a bit brighter today. I tried to post earlier but it seems to have disappeared. Your were asking about hospice. My husband was happy in the hospice as he felt that in hospitals there were lots of interventions with observations being done. Even in a bay with two others it didn't feel intrusive. Thinking of you. Catherine

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It's lovely to read that hubby is a bit brighter and you are sharing some magical moments that will stay with you forever. I never posted Stew's story before because I find it so difficult - but here is brief resume.

He was transferred to the hospice on Feb 1st. At that time he was eating and drinking a little, not enough to keep a fly alive. He had had an operation in hospital to bypass a blockage caused by the tumor. It had grow round the exit to his stomach which caused an obstruction. He needed the op as nothing could pass through his digestive system and he had started vomiting. The operation was technically a success but the care in hospital was appalling. He wanted to go home but it would have taken two days to get everything organised, the hospice place was the second choice. He would not stay in hospital and I would not have left him there another minute. He knew things were changing, his pain was worse and different. He was very aware that changers were going on inside his body. The hospice staff were fantastic. He continued to eat and drink a little each day until Friday 5th Feb when he started vomiting again. He was offered the choice of having a naso gastric tube or vomiting now and again. He chose the tube initially. It did make him feel a bit better initially however by 11th Feb he wanted the tube out as it was difficult to eat and drink even the little bits he was having. Again he felt a bit better with it out. During this time they continued to increase and change his sub cuticular analgesia and anti emetics. He never had a drip at any time. Friday the 12th he was retching but not vomiting. Eating nothing and having sips of fluid - it was all he could tolerate. He then started with the hiccups that lasted till the end. He started to sleep most of the time only responding now and again. On Tuesday 16th Feb at 2am we had our last conversation - he woke and asked me what was happening? why was everybody coming and going - his voice was strong and he knew exactly what was going on. After that he never woke, spoke or ate or drank again. I could tell when he was in pain as he grimaced and the hiccups continued to be troublesome. They gave him medication for them too and it did help. He was cared for exceptionally well by he staff. Bathed, shaved and bed changed with such loving care. He remained in this condition until 09.15 on Sunday 21st February. I think he kept going because he wanted to live so much. His big, kind, loving heart was so strong it just kept on going. I think he developed pneumonia and this is what actually stopped that beautiful heart from beating. I am so thankful that he was painfree and comfortable although I will never forget how traumatic the whole thing was for us. Like you, I was distraught to see how painfully thin he had become, he was such a strong, muscular vibrant man. He used to get so upset when he looked at his body and how it had changed. He wasn't a vain man but he liked to keep in shape and look good. The nature of PC is so vicious, it ravages the body as time goes by. I'm sorry that this is not reassuring for you. It's the first time I've been able to write this much and I am in bits now. Just make sure you say everything you want to say now whilst you know hubby can hear you. I talked to Stewart all the time and I just hope its right when they say that that people can hear even when they are in any kind of coma. Stay by his side and hold his hand. Let him feel your love. Take care of yourself as well - stupid thing to say I know! but try. My thoughts are with you both.

Linda G

XXXXX

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Hi PW


i don't post much but have followed your story from the beginning. We are at tha same stage in this awful journey. My brave dad has fought for almost a year but we know the end is near. My dad wants to be at home and we are trying our very best to grant his wish.



i can see some end of life signs, confusion, seeing people that aren't there, severe weightloss, no appetite. He is still eating a little but cant stay awake long enough to finish anything.


I am sitting beside him right now while he sleeps watching his chest go up and down very slowly.


This is a horrific illness and my thoughts are with you x

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PW, I hope I have not upset you or anyone else by our story. Like you I was unsure about everything and scared to ask. Didn't know what to expect next. I just let the staff do their job and helped Stew as much as I could. I feel the thing about this forum is - it's about truth and honesty, you can't sugar coat this horrific disease. Only people who have experienced it are able to tell it as it really is - a bloody awful, massive, seemingly never ending nightmare. Even when you feel you can't cry anymore, the tears come from somewhere.

xxxx

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Linda, I am so honoured that you have shared Stewarts story in brief. I Realise it must have been very hard for you. please rest assured that you have not upset anyone by doing so, just the opposite. You are a very brave lady by the way who likes many will be traumatised by the cruelty of this disease. Our husbands never really stood a chance really.


I spent many months reading what was going on here without posting but I'm so glad I did.


Marmalade, I will head over to you in a month to check know on Louis but I just have to say a massive thank you to alimc77 for your post. I am so very sorry you are going through the same with your dad. I hope you can find comfort and support and continue chatting here if you feel up to it.


Without everyone on here I'm not sure I'd still be sane.


Tide turned again this afternoon. They got hubby out of the chair but he struggled to get back in bed so that will be the last time he does that. I won't say my goodbyes until he's in a deep deep sleep. I'd rather miss that chance then have him realise what's happening. He was in tremendous pain so the nurses were brilliant and made him comfortable which resulted in him sleeping for the rest of today.


Love to you all xx

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Thank you both. It was only the brief version of his last month. There was so much more went on that is too hard to write. Thats why I never submitted the whole story from when he was first diagnosed. If there was a complication to be got, he got it. He developed diabetes before christmas and ended up on massive doses of insulin. Blood sugars over 33 initially, which made him feel even more poorly. I have been following Marmalades story and Louis sounds like a strong (stubborn!)man, who knows his own mind, just like Stewart and Hubby. What can you do with them? - just provide all the love, support and encouragement you can. I think of the families here often and send m

love and good wishes to you all. Stay strong.

xxx

Linda G

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Hugs PW and Linda

Thinking of you,I didn't say my goodbyes until my husband was in a deep sleep, just keep telling him how much you love him,

love Jayne

x

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Linda you are amazing! It's ridiculous how close I feel to you all given that we have never met. This bond we share is awful in the extreme but incredibly strong.


PW, You sound more calm now and I hope that the kisses helped and that you can keep them in your heart. Your husband is not and never will be defined by cancer. Always thinking of you x

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