Our Journey without chemo

[Dandygal76]

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]

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]

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

You are both doing AMAZING xxx

[PCUK Nurse Jeni]

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

[Guest]

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

[WifeampMum]

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]

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]

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]

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]

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]

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

[Guest]

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]

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]

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

[Guest]

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

[Proud Wife]

You are so very brave and inspiring Marmalade. I mean that from the bottom of my heart. When I logged on this morning and saw the time of your latest post, I thought "oh no" but low and behold another beautiful eloquent post from you.

Wishing you, Louis and Suzie another peaceful and comfortable day.

Lots of love xx

[Guest]

Dear fellow PC warriors and nurses,

I am truly stunned and completely overwhelmed by the messages I have received about this thread. It seems that there are many who are following it, wishing Louis a happy passing and Suzie and I strength and peace. I would love to say that I have a talent for writing but it is just the way things tumble out and I can't claim any credit. I do however hope that others who may have to face this hurdle in future will be just a tiny bit less fearful and may find some strength from Louis very courageous fight.

As I mentioned this morning Louis has slept a great deal and become extremely weak, given that he has had no food for over a fortnight and very little to drink no one can fathom what is keeping him going. When the district nurse (more correctly, sister) came this morning Louis was breathing in cycles of deep inhalations followed by shallow breaths and then pauses of up to 40 seconds. He was asleep for the visit and had been since yesterday afternoon, and barely spoke except to say goodbye. At 2pm he woke up, asked to sit up and have a drink and has watched a 2 hour episode of Sharpe with us. He is still very weak and can't hold a cup even but the transformation was astonishing. At the mid point in the TV programme he suggested we all have some pink champagne so we did. We all had a sip or two and put a spoon in it (I will explain that to anyone who does not know this trick, you put the handle of a metal spoon in the top of the bottle and it stays fizzy for about 3 days, no idea why, probably magic!)

He was so ill this morning that the sister told our hospice nurse that he appeared to be finally on his way. It is now nearly 6pm and he is sleepy again and we have no idea what tonight will bring but he really enjoyed the TV, having his 'girls' with him and the pink champagne. What more can I say?

Love and best wishes for a happy and contented evening M xx

[Proud Wife]

Number 1, you do have an exceptional talent for writing.

Number 2, Pink champagne, perfect choice.

Number 3, Louis is just unbelievable! Fantastic, incredible to even suggest it!

A happy and contented evening to you all too xxx

[jay]

You have a wonderful talent for writing Marmalade, love the pink champagne, wishing you and Louis a peaceful night

love Jayne

xx

[Veema]

hmmm...pink champagne...perfect.

I'm off on holiday tomorrow and I don't think even Louis has the strength to keep going for the next couple of weeks...I hope he stays peaceful and painfree Marmalade, he's a remarkable man and you're a remarkable woman...your posts have definitely made an impact on me, thank you.

Vx

[Didge]

Marmalade, I am on a music weekend in. Canterbury. No pink champagne but am raising a glass of rose to you both. And sending lots of love xx

[Dandygal76]

xxx thinking of you all so much xxx

[Dandygal76]

Marmalade, how are you all?

I did write a long message to you last night and was then going to go onto to PW's thread but thought the better of it because we were also drinking sparkly last night.. but not the pink stuff. When I went into about my hundredth paragraph I decided it was probably best to wait until morning and hence you then got my small reply!

I will say to you that your hope of people being a little less fearful because of your writing has already come to fruition. I know it has influenced me tremendously and how I would approach matters myself and with the grand-kids should our time come with dad. To be honest I never had thought how to approach the entire scenario before and I think before your lovely sharing with us it would have been a very emotional panicked and stricken scenario. Now I think I would have the strength to make things calm and think about how the last memories should be. Whether that translates to reality will though be another matter but I truly hope so.

40 second pauses must be difficult to watch, it must be difficult to rest yourself knowing that Louis truly is teetering between this life and the next. But at least not only is Louis doing things his own way and with such grace, he also managing it with style... pink champagne indeed. Perfect.

All my love x

[Proud Wife]

Beautiful post DG. Brought a tear to my eye but a happy one if that makes sense?

You will have the strength to make things calm I promise you, that inner strength just comes from somewhere. I thought I would freak out watching hubby decline but when needs must, you adapt and you cope.

One thing that comes across from M's beautiful posting is that the end doesn't always have to be traumatic. I have read so many stories on here where the end almost breaks the carer but there is just something so serene about Marmalade's and Louis' journey. The outcome is going to be just as heartbreaking as it is for everyone who has crossed the divide but the final journey is so important too.

I've said it before but I take great comfort in the fact that hubby went so quickly and probably without realising what was happening to him. Given our particular circumstances, I don't think we could have asked for a better final journey.

I do wonder if Louis' request for pink champagne may have been one of his last but if it turns out true, then what a way to go. So, so, so in awe of you both, M & Louis.

Much love xxx

[Guest]

Morning has broken and we are all still here. Louis had a peaceful night but is having a very slow morning and cannot speak or move more than his hands at the moment but to be fair, we have been here before. He showed great disdain for having his eyes bathed, screwing up his face and frowning! He relaxed quite quickly when we put on the Port Isaac Fishermen's Friends belting out some sea shanties. I talk to him about looking up at the big sails filled with breeze and feeling yourself gliding along. He seems to like the image.

Our journey is calm but it isn't always so. Planning and having a biggish space does help, I might write a note with some tips that we have found useful later on. The other must is a GP who is on side. We have been lucky but I think I would have been prepared to be a private patient to get the daily care that we have enjoyed. Knowing which drugs are appropriate and in what quantities is absolutely key. Enough but not too much and given just in time not just too late! It isn't just a case of more and more pain killers.

The sun is shining, Suzie's husband is coming to join us today and I have just made a sponge cake!

Have a good day all of you and for those on holiday, enjoy!

M xx