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Re: Our Journey without chemo

Postby RLF » Wed Aug 17, 2016 7:45 pm

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


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Re: Our Journey without chemo

Postby Sueoliver » Wed Aug 17, 2016 8:30 pm

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

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Re: Our Journey without chemo

Postby MaryButler » Thu Aug 18, 2016 12:45 pm

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.


Re: Our Journey without chemo

Postby Marmalade » Thu Aug 18, 2016 5:31 pm

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
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Re: Our Journey without chemo

Postby Proud Wife » Thu Aug 18, 2016 9:58 pm

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

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Re: Our Journey without chemo

Postby Dandygal76 » Thu Aug 18, 2016 11:40 pm

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

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Re: Our Journey without chemo

Postby Wife&Mum » Fri Aug 19, 2016 10:27 am

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
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Re: Our Journey without chemo

Postby PCUK Nurse Dianne » Fri Aug 19, 2016 5:58 pm

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.


Proud Wife
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Re: Our Journey without chemo

Postby Proud Wife » Fri Aug 19, 2016 6:55 pm

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


Re: Our Journey without chemo

Postby Marmalade » Fri Aug 19, 2016 9:17 pm

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

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Re: Our Journey without chemo

Postby Didge » Fri Aug 19, 2016 11:36 pm

Marmalade, the description of your darling man's last morning was beautiful. My sister in law also died at home a few years ago, surrounded by friends, music and with a smile on her face. You have shown that there is another way for those who choose it. Many people and their relatives are afraid to say no to chemo and to chose to stay at home if they can. Many make their choices positively but some make them out of fear. I think many will take comfort from your story. And you are not alone in the house tonight. Louis is with you, of that I am sure.

Proud Wife
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Re: Our Journey without chemo

Postby Proud Wife » Sat Aug 20, 2016 1:42 pm

Dare I ask how your first night alone was? I can appreciate after spending all of your adult life with Louis it is going to take some getting used to. My sister in law lost her husband last year to cancer and lives alone as her children have left home. She keeps telling me how lucky I am to have my son living with me and of course I am.

Will be back later, just wanted to check in on you and Judith xxx


Re: Our Journey without chemo

Postby Marmalade » Sat Aug 20, 2016 2:20 pm

Didge, you are such a darling!

My first night alone was not too bad. I got off to sleep ok but woke at 1am and watched some olympics for an hour then went back to sleep until 5am then dozed off and on. I think it is going to take a while to get out of the habit of waking and checking on Louis every few hours. I am in the house alone now and am content for the moment.

I had thought I may tackle a 2.5 hour drive to my sisters today and come home tomorrow but as I forgot to pay in the car park when I took a parcel to the post office and forgot to bring the shopping in for several hours I have decided its safer for me to stay where I am and in any case I don't feel I want to stray too far away from the house now. How I feel changes hour to hour, even minute to minute so I think I'll stay put until I am in calmer waters.

Going to look for some undemanding TV this afternoon as the weather is wet and windy and I did manage half an hour weeding and tidying before lunch.

M xx
Last edited by Marmalade on Wed Oct 26, 2016 3:21 pm, edited 1 time in total.

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Re: Our Journey without chemo

Postby Didge » Sat Aug 20, 2016 7:41 pm

Marmalade, just been marking one year since Rob's funeral. He was a rebel but opted for a traditional Catholic requiem mass also. Keep talking to Louis and you will not feel alone. And the small hours are when you will catch the best of the final day of the Olympics! I've only ever managed midnight so far! Xx

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Re: Our Journey without chemo

Postby Veema » Sun Aug 21, 2016 6:40 pm

I have no words Marmalade...I got off the ferry this morning and checked on here immediately, but couldn't post then...what a trooper your man was.

Huge hugs, lots of love and strength and thank you for showing me that there is another way to the hell I have envisaged.

V x