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

Re: Our Journey without chemo

Postby Proud Wife » Fri Aug 05, 2016 11:47 am

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

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Fri Aug 05, 2016 6:12 pm

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

Re: Our Journey without chemo

Postby Proud Wife » Fri Aug 05, 2016 6:30 pm

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

Re: Our Journey without chemo

Postby jay » Fri Aug 05, 2016 8:00 pm

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

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

Re: Our Journey without chemo

Postby Veema » Fri Aug 05, 2016 9:05 pm

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

Re: Our Journey without chemo

Postby Didge » Fri Aug 05, 2016 10:25 pm

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

Re: Our Journey without chemo

Postby Dandygal76 » Fri Aug 05, 2016 11:07 pm

xxx thinking of you all so much xxx

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

Re: Our Journey without chemo

Postby Dandygal76 » Sat Aug 06, 2016 9:23 am

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

Re: Our Journey without chemo

Postby Proud Wife » Sat Aug 06, 2016 11:11 am

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

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Sat Aug 06, 2016 11:37 am

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

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

Re: Our Journey without chemo

Postby Didge » Sat Aug 06, 2016 1:59 pm

Do make some notes. I still have to write to Rob's hospice about a couple oh things which would be very helpful for others following on. Glad Louis is still enjoying some music! X

Judith16
Posts: 25
Joined: Sat Dec 19, 2015 7:09 pm

Re: Our Journey without chemo

Postby Judith16 » Sat Aug 06, 2016 7:10 pm

Marmalade
Sending you such love and hugs xx

Judith

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Sun Aug 07, 2016 11:20 am

Another day! Louis has been sleeping quite a bit and is not really awake yet. He has just told me that he doesn't really know what he is doing here ( not sure which 'here' he means) So have told him he is very poorly and needs to be cared for by his girls and that he is safe in bed with us. He seemed happy with that.

He was not able to tell us that he needed a pee so was not cleaned up immediately. This is a first. As a result he ended up with a full wash and brush up and a clean bed. An exciting morning for us all and Louis is now having a rest!

He has had a lot to drink this morning. Nearly a pint of water, much more than he has been having.

Dull day here but nice for Suzie to have her man with her and I hope you all have some quality family time planned

Much love xx

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

Re: Our Journey without chemo

Postby Dandygal76 » Sun Aug 07, 2016 11:57 am

Marmalade, I am glad you are all still with us and that Suzie has her man. As an aside, I keep meaning to say to you that toast will never be quite the same again in the morning. My morning ritual has been marmalade on toast for years... and now it has you and Louis in my thoughts every time.

I think it is probably a relief as well to have Suzie's partner there.. I know you was thinking of their distance through this.

May your day be peaceful and full of love. x

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

Re: Our Journey without chemo

Postby Proud Wife » Sun Aug 07, 2016 12:23 pm

Love our Marmalade but as for the orange stuff - yuk!! I know M won't mind when I say your comment made me have a little giggle DG!

Amazing (and good) that Louis was able to drink so much water - they say it takes a lot of energy just to swallow. Words can't express just how much I admire you both. Hope Suzie is able to enjoy her time with her partner, despite the circumstances which bring them both to you.

Sun is tweaking out here , so off in the garden I go.

Love to you all xx