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

Re: Our Journey without chemo

Postby Didge » Tue Aug 09, 2016 11:34 am

And for all those who don't want to think about this beforehand you can't do better than Emma Freud's piece how to do a funeral from the Guardian in 2014. I posted the link before but just Google her name and funeral and you will find the link. This can be read when the time is right for you, not someone else. It has some gentle humour along with some very food advice x

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

Re: Our Journey without chemo

Postby Proud Wife » Tue Aug 09, 2016 11:54 am

Oh my goodness Marmalade, it certainly was not just you. How terribly thoughtless and inappropriate. I think Didge has summed it up brilliantly over on the previous page. I would have been so very upset in your shoes. You have absolutely no need to even think about it at this present time and I'm only really sorry that someone has been so stupidly insensitive at a time like this.

Looking forward to chatting to you over on Facebook. Will be lovely to ask the questions that can't be asked on a public forum!

Much love to you, Louis and Suzie xxx

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

Re: Our Journey without chemo

Postby Proud Wife » Tue Aug 09, 2016 10:52 pm

Pushing this thread to the top.

Hope you and Suzie manage to get some rest tonight.

May I wish each and every one of my forum family a peaceful night. Sleep well x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Our Journey without chemo

Postby Dandygal76 » Wed Aug 10, 2016 8:59 am

Lots of cyber love and hugs from me to you lovely lady. x

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Wed Aug 10, 2016 11:02 am

Good morning lovely people,

Good bits - Louis slept quite well and so did we. Had a nap yesterday evening while Suzie kept Louis company. Woke and checked him at about 2am and 4am but went back to sleep each time so feeling refreshed. Am in touch with PW by email and FB, I have asked support to give my email address to the posters on this thread if they would like it.

Not so good bits - Although mostly asleep Louis is quite worried about his situation when awake, he has a medicine spoonful of champagne if he asks which is lovely but when we are alone he tells me he is worried about not being able to move or speak properly (very dry on waking and it takes loads of drips of water and mouth spray before he can speak even in a whisper) he also worries about how he will actually die. It's clear to me that when he is awake and can express himself he is worrying. Quite often he is quiet and appears to be asleep but when I speak to him he says he is thinking about things. He also has very painful gout in both wrists now, there is nothing to be done as hydration and anti-inflamatories are the only medicine and the likelihood is that anti-inflamatories will be the last straw for his damaged kidneys and he has decided no IV fluids. The options are clear. Keep the medications where they are and just keep reassuring him and trying to keep his joints comfortable or agree to more medication which will combat his pain and keep him asleep. I very quickly have to say that he seems very peaceful when asleep and tells me he has lovely dreams. I also have to admit that when awake, he frowns most of the time. I'm going to think about it, the Doc is back from her holidays and here later.

The sun is shining so I hope that we can all have a few moments to catch dome vitamin D today. Much love to you all xx

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

Re: Our Journey without chemo

Postby Didge » Wed Aug 10, 2016 11:41 am

I am Facebook friends with PW so do add me if you wish. I have had 2 Partners and a best friend die of cancer who knew the end was coming and all expressed fears and questions about the end, quite naturally. I would be the same. I just said nobody could know how it would be but it would be ok as it as natural as birth and everyone has to do it. Sometimes people see someone coming for them. I am sure Rob did as for the last few hours he was staring intensely at a corner of the ceiling and nothing could distract him. Afterwards a friend of his told me it is always to the right which was where he was looking. Whether it is really someone coming or just trick of the brain, it must bring comfort. Perhaps similar to the lovely dreams Louis us having. One thing I would say is think about music he'd like (you probably are doing this already)and also who he would like there as he may just want you or a couple of specified people. The other thing I asked for and got was oxygen if their breathing got laboured. I was told it probably didn't make any difference but I did this for both partners and they became much calmer so that was good enough for me! Lots of love to you and everyone at this critical point xx

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

Re: Our Journey without chemo

Postby Proud Wife » Wed Aug 10, 2016 12:22 pm

What Louis is going through now, was my worst nightmare. Thankfully for both of us, that never happened and passing as you know was quick. I shudder to think what it must be like to experience this in reality. I do think however my lovely, you know the answer to this dilemma reading the last few lines of your penultimate paragraph. I took comfort in knowing that my hubby was away with the fairies and was not aware of what was going on. We know the eventual outcome and I suppose as much as it hurts me to say this and knowing you will want Louis with you for as long as humanly possible, there comes a time when our loved ones can no longer be kept conscious and pain free and only you will know when that time comes. Didge makes a very good suggestion with the oxygen.
Thinking of you and only 3 foot away from contact if you need me xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Our Journey without chemo

Postby Dandygal76 » Wed Aug 10, 2016 12:36 pm

I think as well that perhaps you already have the answer Marmalade. We don't want to see them distressed do we. Just remember.. Louis won his fight. An amazing man. x

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

Re: Our Journey without chemo

Postby Proud Wife » Wed Aug 10, 2016 2:06 pm

I'll second that.

PCUK Nurse Chris
Posts: 17
Joined: Wed Jan 14, 2015 4:03 pm

Re: Our Journey without chemo

Postby PCUK Nurse Chris » Wed Aug 10, 2016 4:57 pm

Hello Marmalade,

Reading your posts and I just wanted to say that all of us in the support team are thinking of you during this tough time that you are all going through. It is so difficult to see loved ones in what could be a distressing state. If you think there are any symptom issues that are unresolved then do contact one of the health care professionals responsible for the care of Louis in this delicate stage.

Oxygen can be used towards the end of life if breathing is particularly distressed however the issue can be that it also causes drying to the mouth and nasal cavities which may cause more distress and discomfort. The individual using oxygen therapy may also feel claustrophobic and or restricted with a mask or nasal cannula in place. If oxygen is to be used continue with the excellent mouth-care that you are already doing by applying lip balm, mouth washes and gels on a regular basis.

An alternative might be to request that a sedative such as midazolam or levomepromazine is added to the syringe driver pump. This can help to relax and ease any distressed breathing and may contribute to relieving any anxieties and fears at the end of life.

Please do not hesitate to contact us on the support line (0800801 0707) if you have anything you wish to discuss

kindest regards
Chris
Nurse specialist
Support team
Pancreatic Cancer UK

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Our Journey without chemo

Postby jay » Wed Aug 10, 2016 5:48 pm

Just to let you know Im thinking of you all at this very difficult time. Jem (my husband) was sedated in his last few hours as he was in incredible pain which morphine etc wasn't really touching. It really calmed him down and the last few hours were peaceful. (Prior to the sedative the night before he too looked towards the right and held out his arm as if he saw someone at the end of his bed.)
Massive hugs Marmalade
Jayne
xxx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Wed Aug 10, 2016 5:58 pm

Thank you all for your thoughts and responses. Yes, Ido know the answer but it helps me to write things and it is part of the journey. Thanks nurse Chris we do already have malazadam in the driver but are monitoring the doses as it can actually make agitation worse at high levels. The gp has given him a steroid jab and anti inflammatory suppository for the gout pain. We think it is enough to relieve pain without waking him up.

His diamorphine has been increased again and he is sleeping but still not completely settled yet. One really does wonder at the resilience of the human body.

We will continue with our vigil as long as needs be with our music and books and chat. We know that irregular and laboured breathing is often a feature of approaching death and is more distressing for loved ones than the patient. At the moment Louis is just fed up with not being able to move. He has no unfinished business, he has received unction from his priest and is at peace with everyone. It really is just a question of time. The comment re dying being natural is very apt and we reassure him on this which he nods agreement to. It is a labour like birth and at the end is peace and rest.

We hope you all have a good night. Bless you all for your continuing thoughts, prayers and love xx
Last edited by Marmalade on Wed Aug 10, 2016 9:25 pm, edited 1 time in total.

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

Re: Our Journey without chemo

Postby Proud Wife » Wed Aug 10, 2016 6:44 pm

Much love Marmalade x

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

Re: Our Journey without chemo

Postby Didge » Wed Aug 10, 2016 7:37 pm

A quick comment on the oxygen. I was told this time round that they would not agree to a mask so I held it over his face but not touching him. I actually found comfort that I was doing something for him in this strangest of times. Thinking of you constantly x

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Thu Aug 11, 2016 12:11 pm

Good morning all,
Louis has been sleeping quietly since yesterday teatime and is listening to Emma Kirkby singing on a favourite cd. He has not moved all night but looks very comfortable and today there is no frowning so I am happier about things. He is breathing in cycles but the breathing is quieter and shallow followed by long pauses of around 40 seconds.

Everything is calmer today, less people coming and going and as he has not been drinking (apart from the one 5ml spoon of champagne yesterday) there has been no need to disturb him. We will just hang out now and see him through this transition . No hurry, he will go when he is ready.

Hope you all have a good day, we are not distressed so please don't worry. Just marking time and chatting about happier times so that his dreams are good ones.

M xx