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

Re: Our Journey without chemo

Postby Dandygal76 » Tue Aug 02, 2016 7:25 pm

Hey Marmalade, I am glad Louis is still with you and comfortable. You know everyone is here with you and sending you so much love and support. I think if you want to contact with e-mails then the protocol is to go through the PCUK nurses support e-mail address. Stay strong lovely lady. x

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

Re: Our Journey without chemo

Postby jay » Tue Aug 02, 2016 8:08 pm

Just popped in to see how you and Louis were doing, so pleased he's comfortable. You are truly amazing,
love Jayne
x

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

Re: Our Journey without chemo

Postby Proud Wife » Tue Aug 02, 2016 8:20 pm

Wishing a very special couple another peaceful and pain free evening.

You are both doing AMAZING xxx

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: Our Journey without chemo

Postby PCUK Nurse Jeni » Wed Aug 03, 2016 11:58 am

Thanks DG.

Yes, Marmalade, if you wish to share your email address with anyone, then it is done via us - we can pass on to whoever with your permission, and also, that they want it too.

You display amazing courage and strength - Louis is a "lucky" man to have you looking after him, with the lovely memories you share together, and with others on here.

Best wishes,

Jeni Jones.
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Wed Aug 03, 2016 4:20 pm

Hello all,

Our situation is mind boggling. Louis has not eaten for 14 days, not a thing. He has had small sips to drink of around 200 mls per day and sometimes nothing. There is no explanation for the fluid intake vs fluid pee'd out balance - far more is coming out than going in and yet he is still with us, still comfortable and, despite the odd bit of rambling where he has clearly been dreaming, he is lucid and coherent when awake.

Don't get me wrong, I am not complaining. As long as he is comfortable I am happy. He slept most of yesterday with the cyclical breathing and his veins in his hands have collapsed but has been awake today, his breathing has returned to regular shallow and he held a long conversation with the GP about her going on holiday later today…in French! The GP is bilingual.

I am certain people around us think we have exaggerated the situation. All you can do is laugh it off and wait. I have a sneaking suspicion that he is determined to use up his annual subscription to the Daily Telegraph which runs out later this month! There are no significant dates or anniversaries looming or anything like that and he doesn't seem worried or anxious about anything. In fact he seems very relaxed and peaceful, everyone says so.

Anyway, today we decided to give him a good wash as we had not bothered too much for obvious reasons but we managed very well and he says he felt better for it although he was also glad when it was over! He has sore eyes because like his mouth his tears are drying up. We have tried with all sorts of potions and sprays but he doesn't like them so we are back to a warm wet flannel followed by a cool pad of optrex which he will tolerate, just.

Now off to watch Sharpe on TV with him although he sleeps through it he likes one of us to be with him and we like to be there. I am also trying to arrange a locum for Suzie so that age can go home and have a night with her husband. She is resisting but I'm going to try.

I am overwhelmed with the love and support (over used word but genuine in this case) that you all show us. We are fine, emotionally exhausted but still laughing and crying and hanging out together. Much love to you all, I think of you everyday and try to keep up and if I fail it is not because I don't care.

M xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Our Journey without chemo

Postby Wife&Mum » Wed Aug 03, 2016 5:16 pm

A roller coaster ride with a calm and gentle landing - I hope things continue this way for as long as Louis wants.

My wonderful Mum who passed away in March from heart failure and adrenal cancer also confounded us at the end by staying alive for weeks on virtually nothing. We wondered if it was the ascites that were keeping her going once she stopped taking fluids.

xx

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

Re: Our Journey without chemo

Postby Veema » Wed Aug 03, 2016 8:55 pm

I hope Louis can stay calm and peaceful like this until he slips away, whenever he decides the time is right.

Much love Marmalade.

Vx

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

Re: Our Journey without chemo

Postby Dandygal76 » Wed Aug 03, 2016 9:55 pm

Marmalade, I hope you enjoyed your episode of Sharpe.. my dad is a repeat watcher of it and so I have seen all the episodes. I am glad that Louis is mostly lucid and coherent whilst still comfortable and that you are still getting some more quality time whilst he waits until he is good and ready to go and only then, just as it should be.

I can imagine it is exhausting both physically and emotionally for you all and I hope between you and Suzie that you are able to both get some rest, however intermittent.

I hope things continue on the peaceful path you laid the foundations for - you are an inspiration and I hope, when it comes (whether PC or old Age), that I can learn from you and have your strength.

Much love to you all

xxx

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Our Journey without chemo

Postby Didge » Thu Aug 04, 2016 12:39 am

Marmalade, I hope he squeezes every last drop out of that subscription. I am glad these days are peaceful and often lucid. Wishing you love and strength for these surreal times xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Our Journey without chemo

Postby sandraW » Thu Aug 04, 2016 8:46 am

Marmalade. sending love and thoughts your way, I am on holiday so will not be able to post, but be sure you I will be thinking of you all love sandrax xx

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

Re: Our Journey without chemo

Postby Proud Wife » Thu Aug 04, 2016 11:50 am

Amazing. A very quick post from me as I'm rushing to go out but didn't want to go without saying something. Other than amazing though, words escape me!

Thinking of you both xxx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Thu Aug 04, 2016 2:22 pm

Still here!

Louis very sweet today, it was a bit like an episode from the Two Ronnies with Louis whispering "I want… I want…" and us trying to second guess with a drink? a pee? to sit up etc… and him shaking his head "I want….I want… a cuddle!" Who could resist? Big cuddles all round after which he settled nicely to being read the headlines from the paper. I say headlines but I don't bother with violence and politics, today we talked about King Arthur and the possible discovery of a palace in Cornwall and usually there is a cat story somewhere. He is no longer able to concentrate on doing the crossword or to remember the clues so we don't bother.

I have started reading Wind in the Willows to Louis a little bit at a time. He loves it and although he nods off it makes no difference as he knows the story and just likes to be reminded.

He is weak and looks ghastly pale and sunken. I ask if he is uncomfortable or worrying about anything but truly, he seems perfectly calm and enjoys quiet company. He is still cracking jokes, as the district nurse was resetting his driver today she apologised for making a noise while he was listening to music, he said it sounded like she was cocking a Luger! Everyone laughed.

The GP is away for a week so brought her registrar to meet us as she will be looking after us until next Wednesday. We were a bit surprised to find that Kate the registrar has been instructed to telephone us twice a day and be available over the weekend. We are truly blest. Suzie won't take a day/night off even though I have found a recently retired Macmillan nurse who will step in. I know why she won't and I don't think I could either but nice to know there is someone who will come in on our terms if we need it.

Every day a little weaker, can't hold a mug or glass now nor sit up, turn or lie down or see very well but the spirit is absolutely still there.

Much love to you all and I hope you have a good day xx

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Our Journey without chemo

Postby Didge » Thu Aug 04, 2016 4:26 pm

Marmalade, what a lovely post. Louis must be very strong to still be with you. So glad he is in good humour. Asking for a cuddle brought a tear to my eye. Xx

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

Re: Our Journey without chemo

Postby Dandygal76 » Thu Aug 04, 2016 6:47 pm

Hi Marmalade, I am so glad that Louis' spirit and his humour is still there with you and it sounds as though you are still getting some invaluable quality time together. I would be the same as Suzie in a bedside vigil with my mum, she must be a comfort to you. It sounds as though you will have a good personal service with the registrar similar to your GP. I think she will have your GP to answer to if not!

Your post is so lovely and such a reflection of your love for Louis. I hope you night tonight stays calm, peaceful and special. x

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Fri Aug 05, 2016 8:53 am

Good morning ladies and gents possibly..

We all got through the night although both Suzie and I have been a wake since the wee small hours. Nothing specific but Louis went to sleep yesterday afternoon and has really not woken up since except to groan (once) and say he needed a pee. He can pee at will but sometimes forgets and he likes us to know so that we can clean and clear away straightaway. He doesn't seem to be able to speak now except to whisper the odd word which is mostly 'lovely' when we have plumped his pillow or massaged his feet or damped his mouth. He has changed down a gear and is just sleeping.

We have given him a bit of a wash this morning and put on some sunflower cream, I know I bang on about it but really it is fantastic stuff and Louis has not had one single bedsore or pink patch. You can buy it on line and it's called My Trusty Little Sunflower lotion/cream and all the money stays in the NHS. Louis skin is now paper thin and dry. His eyes look less red today with us putting the imitation tears in all day yesterday but you can tell he no longer sees properly.

So we wait again and see what happens today but he appears to be comfortable bless him

Much love to all, I hope every one of you has a good day. Keep smiling xx