Our Journey without chemo

[Proud Wife]

Oh DG you couldn't have summed it up any better. Spot on. I'm hurting and the first person I'd turn to would be hubby.....

Marmalade, absolutely. How I wish we all didn't understand xxx

[Guest]

Coming to the end of another day. It's been a hard one. We have daily discussions about whether we should move Louis. When everyone thinks it will be his last day it's hard to justify pulling him about or rolling him. We took the bull by the horns and decided to wash him and this time to turn him. We were very shocked that he groaned and that his pyjamas had creased on his back and almost made cuts in him. He had bruises where his neck and shoulders had been touching the pillows. I texted the doc immediately and she came at once and bumped up his morphine and the district nurses have been to check him over and put pressure dressings on. They were both so kind and said it is very common in cases like this as he has no flesh at all and his skin is paper thin, inevitable they say. It has not stopped me thinking I have let him down badly.

Suzie and I have wept and apologised to him but have no idea if he hears, I pray he does.

Not my best day but Louis is still very peaceful and breathing is stronger if anything, he is such a trooper.

M xx

[Dandygal76]

I am not very good on phone Internet so sorry if this does not type well. He hears you lovely lady... they say hearing is last to go. And I understand you are upset but you can only make your choices at the time. You have devoted youself to allowing Louis to pass with dignity and pride and don't let this detail distract from what a fantastic job you have done... we are in awe of you. Now please no longer say sorry to him. Let your last words be everything of love and beautiful memories... just like you know he likes it. Very much love to you. X

[Proud Wife]

Oh M, you have done nothing but your best for Louis. You have absolutely nothing to say sorry for. And Louis knows that. You are clearly exhausted both mentally and physically and probably wondering how much more you can take. Hang on in there lovely brave inspirational special lady.

Love PW xxx

[Guest]

Good morning everyone,

My darling Louis died peacefully at about 8.30 this morning. His ordeal is over.

Through the mercy of God may he rest in peace.

M xx

[Ant11]

Dear M, You and Suzie are very much in my thoughts and prayers as your wonderful Louis has earned his wings and will now fly high with our loved ones on the other side. The sun is shining brightly as he makes his final journey home. Your strength, care and devotion has never faltered. He will always be by your side guiding you through the coming days, weeks and months along with your forum friends. Love Annette xxx

[Proud Wife]

Dearest M

Thinking of you. As you know, you can contact me day or night if you just need to talk off forum.

All my love

PW xx

[PCUK Nurse Jeni]

Dear Marmalade,

We are so very sorry to hear of the passing of your beloved Louis this morning.

On behalf of all the nurses, may we extend our deepest condolences to you and Suzie and the rest of the family at such a heartbreaking time.

As you have described, his ordeal is over.

Thank you for all your loving updates throughout this journey. You have certainly inspired so many people on the forums.

Our deepest sympathies,

Nursing Team,

Pancreatic Cancer UK.

[WifeampMum]

Rest in peace Louis.

Much love Marmalade, so sad for you.

W&M xx

[Dandygal76]

Dearest Marmalade, I am so sorry that Louis has passed and crossed the divide. He battled bravely and we all feel so proud of him, even though we never met him. You know we are here for you at this hardest of times. Much love to you, Suzie and the rest of the family. x

[boa]

Marmalade I don't post now but I have been keeping up to date with what has been happening. I was sorry to read that Louis died this morning but I'm so pleased it was peaceful. No matter how prepared any of us are for a loved one's death it is, nevertheless, agonisingly sad and I am thinking of you and the family.

Catherine

[jay]

I am so sorry Marmalade, glad Louis's passing was peaceful. Who have been totally amazing. I am thinking of you and your daughter, massive, massive cyber hugs

love Jayne

xxxx

[Sandiemac]

Even though you have been expecting this on a daily basis it must still be a terrible shock for you but you can rest assured you did everything (and more) humanly possible to help him through this. I am full of admiration for you.

My deepest condolences.

Sandie x

[Linda G]

Dear Marmalade, I am so very sorry to read of your lovely Louis' passing. That it was so peaceful is down to your's and Suzie's never ending love and care. I know how hard it's been for you. So sad for you. I haven't been posting lately but I have been following your story. Your love and devotion to Louis shines from your every post. A very special couple. Don't forget to take care of yourself.

Love and prayers to you all.

Linda G.

XX

[Didge]

My dear Marmalade, my love and tender thoughts are with you xx

[RLF]

I'm very very sorry to hear abou Louis. May he now rest in peace. Hope you are coping as best you can

Rob

X

[Sueoliver]

Dear Marmalade,

I am so sorry you have lost Louis. I am thinking of you and sending you love and and strength. Sue xxx

[MaryButler]

Dear Marmalade. I just want to say how sorry I am. I said goodbye to my beautiful daughter two years ago. I have checked your post several times every day since you started posting. This is the first time I have messaged anyone but wanted you to know you are in my thoughts.

[Guest]

Thank you all for your unfailing support and encouragement. It has been a mainstay in the darker moments.

I'm going to describe his death, I understand if you don't read on.

Louis simply stopped breathing, no drama, no long pauses no hideous noises. Suzie opened his curtains and told him it was a lovely morning and kissed him hello on a new day. I went in a few minutes later and did likewise, replaced his flowers (sunflowers and lavender to remind him of Provence) and went for my breakfast. Interestingly Suzie's husband had arrived the night before out of the blue, a job had been cancelled and so he was taking yesterday off.

After breakfast at about 8.45 I climbed the stairs and could hear Louis breathing regularly (months of being alert to changes). I went in and stroked his head and after a few moments he stopped breathing, just stopped and for the first time in weeks he closed his mouth. His bladder gave up the last little bit of fluid and he appeared to smile! Suzie and her husband were downstairs watching the Olympics so I just called Suzies name quietly and she knew at once, came in and we held him and kissed him and prayed for him until he was completely cold. Unusually the GP was late phoning that day. We had just stepped away from him when she phoned and we told her Louis had died. She agreed to come out later in the morning. We changed the bed, washed and dried him and covered him up. It was a very hot day so I brought in a fan to keep the room cool.

We telephoned the funeral people and told them that we would like some help to dress Louis later that day before removal of his body and they agreed to send someone in the afternoon, a lovely lady called Crystal.

The GP arrived with her trainee who had been caring for us when the Doc was away on holiday. Helen the GPs first words were "he is smiling". His mouth remains closed in a sort of Mona Lisa smile. We all laughed about Louis requests for parties and pink champagne and we opened a bottle and drank a few sips to him, it seemed appropriate.

The funeral directors, came and we three ladies dressed him smartly with Krystal pinning his clothes neatly at the back to make them fit. We kissed him again then wrapped him carefully in a clean white cotton impermeable sheet and laid him on the stretcher and secured him gently. A dark red velvet cover was put over him. Krystal took such care and when it was done the men were summons to carry him down stairs and to the private ambulance. We have been weeping on and off since then, for ourselves not for him as he is released from his pain and obligations. We will recover in time but for now we are sharing our grief.

I put these details as therapy for me and so that others might not be afraid of the unknown and I apologise to those for whom the memory is still too raw.

Much love to you all, may you have joy in your lives and may you and your charges live life to the full however long that life be. M xx

[Proud Wife]

Even now your writing is incredible M, thank you so much for sharing that with us. It is a honour to have heard about Louis' last morning at home. You have done and are doing brilliantly.

Lots of love xx

[Dandygal76]

Marmalade.. my thoughts are with you all. Such a peaceful and dignified passing. I will get online Sunday for proper response. I just wanted to send you a cyber hug right now. X

[WifeampMum]

Dear Marmalade, I think your posts have made an incredibly important contribution to the forum and Louis will live on here (as well as in your heart and mind).

Thank you for your honesty, and having the strength and wherewithal to share. I know you always say that you write for 'you', but you manage to get it right for your 'audience' too which is a rare thing when there are so many sensibilities to consider here.

Love, hugs, strength and wishes of comfort for today and beyond

W&M xx

[PCUK Nurse Dianne]

Dear Marmalade,

I know Jeni has sent our thoughts and heartfelt sympathies to you and Suzie at this time. As all of us who 'share' this forum are aware, this is a 'tough' disease to say the least, and we hear so often from many of you who struggle endlessly throughout.

Marmalade I also wanted to say a few heartfelt words through 'moist eyes'. Throughout this journey you have been gracious, understanding, so supportive and empathetic to the other 'forum family members' and ever so humble. You have shown so many another side to this tough journey of such deep understanding and amazing love, and absolute selflessness throughout.

We thank you for your wonderful writings, and your amazing ability to share this very personal time with us all. I know Louis will be forever a special part of your life and we cannot thank you enough for your absolute graciousness in sharing this time.

May your days ahead be filled with special memories and new found peace for Louise.

Our heartfelt thoughts.

Dianne

[Proud Wife]

Beautifully said Dianne and so true.

W&M you are so right about the "audience", especially the wider one, who have not yet started to post.

Thinking of you and Suzie Marmalade and sending cyber hugs to you both xx

[Guest]

Thank you all for your lovely comments.

I get a little concerned as you make me sound angelic and I am no angel I assure you. I have as many faults as the next person and a few more probably!

I admit to exhaustion today, our priest came to discuss readings etc and I had a scheduled hair appointment which I kept but even these small things seem to have drained all my energy.

I so admired PW and her yellow themed farewell, it takes courage to follow your heart and do something out of the norm. Louis and I are boringly traditional when it comes to ceremony. It will be a requiem mass with all the music Louis selected. Proceedings will begin with 'Le Regiment de Sambre et Meuse' as a tribute to his Belgian family who came from the area around the confluence of these rivers. There will be traditional hymns and a recording of Emma Kirkby singing Ladoute Dominum (if you like this sort of thing do try this version - it's something special) and the Stabat Martyr. He will be played out by his regimental slow march 'Farewell Manchester'.

For those of you who are interested we have chosen the following readings:

Wisdom Ch 3 vs 1-9

1 Corinthians Ch 13 vs 1-13

And the gospel of John Chapter 14 vs 1-6

Lovely chat with my sister this evening. I am a long way from my siblings and am feeling the distance. She has texted me 'good morning' each day since Louis died so that I always hear good morning from someone. She is a very sweet big sister. I have made Suzie go home as she is also exhausted and feels that she must now care for me! She needs to get back to the arms of her husband and prepare herself for a minor operation next week and the funeral the following week. I am about to spend my first night alone in the house for many years and I am not looking forward to it. I hope I am so exhausted that I will not feel the loneliness and in any case I must, like so many others, get used to it.

Goodnight to you all, may you rest easy,

M xx