Our Journey without chemo

[Guest]

Still tottering on.

I think our GP is a saint! She has stuck to us like glue, phones morning and evening and calls in when she is passing. The day before yesterday she called in at 8pm on her way to do her weekly shop. She brought her teenage daughter who has been doing work experience in local hospitals and is hoping to be a GP too and asked if she could come in. It was lovely, we all had such a nice chat and Louis told the teenager that she would make a fine doctor and asked her if she wanted to ask him anything about his situation. They had quite a chat about things. It was a warm cosy time for us all showing off our daughters and being proud parents. We are so lucky. Her experience in end of life care is incredibly valuable and she has managed his medication with a light touch and a pre-emptive approach to give us best lucidity and symptom control, and she has been a star!

Priest came yesterday, another welcome visitor. A good man and an easy manner. I know it's part of their job to gauge what to say and do at these times but somehow or other he seems to make it a comforting and confident encounter.

Louis is very weak but somehow manages to get to the lavatory for a pee with help. This is only perhaps once or twice per day now as he has not eaten at all for 6 days and is drinking less than a teacup full of water. If he asks for food or different drinks we bring it but they never get to his lips, he goes off the idea as soon as he sees whatever it is. He slept most of yesterday but seems to wake at around 8pm for a couple of hours and today the little dose of steroid has kicked in fully and he has been awake and chatting with us all morning.

He is a real trencherman and I have decided that if he can bear all this with good grace and courage then I must try and face the future in the same way.

Love to all as always M xx

[Veema]

I have sat and read all this thread this morning. I'm sure it will help me face the future and what's to come, whenever that may be, so thank you for that. I won't be able to devote all my time to my husband in the same way though, sadly, as we have a 10 year old daughter who also needs lots of love and attention. She is coping fine at the minute, but don't know how she will react to the end of life scenario.

Lots of love and strength Marmalade as you face the coming days.

Vx

[Guest]

Dear Veema,

I'm so very sorry to hear that you are on this journey especially as your husband is so young, it must be ghastly for you all. I hope that his youth and vitality will carry him through, None of us know when a breakthrough will come but there is always hope.

My father died when I was 14 and my mother when I was in my 50's. I can't honestly say that one was harder than the other. My father was an invalid for many years before his death so I was no stranger to hospitals and illness and sat with him along with my mother and sister when he died. What matters is the love and relationship you share. She will take her lead from you and from your husband and grandparents etc. If you are all in it together and can find a way of sharing with her she will cope, I promise. Hospice teams have lots of experience supporting children in this situation and helping you to explain things so don't hang back, ask for help.

I wish you strength and good fortune on your journey

M xx

[Veema]

Thank you...she's no stranger to the medical world having had open heart surgery when she was 3...she was born with no atrial septum. The support of strangers in a forum got me through that too and I count those strangers as some of my closest friends now despite never meeting.

When I first joined this forum, there wasn't much activity...sadly it seems much busier now.

I hope your Louis has had a peaceful day x

[Dandygal76]

Lovely M

It really does sound like you hit the jackpot with your GP, she seems truly dedicated. I think sometimes having youngsters around as well can really deflect things for a while and cheer us all up immensely.

I must admit priests are also great at this time, not necessarily for the religious need, but because they just know how to be and how to comfort and in my experience, how to laugh and make it all more bearable.

Louis really is a real trencherman, you must be so so proud of him. I am proud of him and I have not met him. I think of you all often,

We are never far away if you need us.

I hope you have a restful night.

xxx

[Proud Wife]

Snap DG but I thought it would sound a bit insincere if I said it so didn't....until now!

Louis is UNBELIEVABLE and shows true sense of character.

Our lovely M, you will face the future with good grace and courage because you are one special lady. Your devotion to Louis is clear to see, your care and concern for others on here when you have enough on your own plate is quite humbling and you just have a way with words. If it was anyone else's thread, I'd be half scared to read in case it was bad news (and that scares the living daylights out of me because I now know the pain) but your posts are addictive!

I don't want to speak too soon but if I can cope, anyone can. I'm afraid the harsh reality is, we just don't have any choice other than to do just that; it's what gets me through each day. I know hubby was very, very concerned that my son and I would be okay so as I get into bed each night, I ask him if I did okay and was he proud of me that day. I do my utmost to keep busy and to keep a positive attitude that he nagged me to have for the 21 years of our marriage! Tables have turned now in a way, I'll always be the proudest wife ever but I'd like to hope he's a proud husband as he watches over us.

Wishing you both another peaceful and tranquil night.

Lots of love to you both and of course Doctor Daughter who you must be mighty proud of. xx

[Guest]

No need to come to this thread with dread. There will be sadness I know, but my man is still here with us and tells me he find my daughter and I chatting and comings and goings a comfort.

We have had joy and tears today talking about some of the lovely times we have enjoyed champagne over the years. Sitting in the gardens at Versailles one Sunday afternoon on our honeymoon, a rare occasion when all the fountains were on and we bought and ate heavenly chocolate truffles and drank champagne, the terrace of the hotel Sicily, the sumptuous picnic lunch at Deene Park, the birthdays, births, and marriages and so on.

Louis is very very weak but is struggling manfully to use the commode which we take out of his room when not in use along with all medical equipment and drugs. He knows we have less tiring means but he is hanging on to any semblance of dignity as long as he possibly can. I doubt he will be able to do it this evening. He has not eaten for over a week and is now only drinking crushed ice cubes. The pulse dose of steroids have got rid of the nausea (wonderful) but shot his blood sugars up and he is peeing 3 times a day in volume higher than those he is putting in which obviously can't go on. None of us can fathom how he is managing to stay with us and we have told him that he has done enough and he can go when ever he feels ready but can stay as long as he wants.

We are so lucky that he has not suffered with painful bowel obstructions or liver problems, his body is just very very slowly closing down. His mind is razor sharp still. He remembers all the names of the district nurses and surprised the one this morning by greeting and speaking to her in Welsh (she is Welsh).

This evening Suzie, the doctor daughter and I will hang out with him and watch The Imitation Game - Louis will probably sleep but he likes us to do family stuff. I'm sleeping next to him at the moment and sometimes, if Suzie is wakeful we swap over, we seem to manage.

I wish you all a beautiful evening and a peaceful night.

M xx

[sandraW]

Marmalade, Just thinking of you all, and remembering those feelings, even though Trevor had a catheter fitted he used to save up the urine and then pee into the bag he did it for the last time about 24 hours before he died, there was suddenly this peeing sound, even though he seemed to be asleep. Our strong willed men, god bless them love sandrax xx

[Dandygal76]

Thinking of you all so much. x

[jay]

Thinking of you all and sending my love

Jayne

xxxx

[Guest]

My darling Louis asked us if he could go for a walk along the landing last night. Of course it was impossible but Suzie and I lifted him out of bed and onto the little wheelchair we had kept in reserve and pushed him to the landing window where he watched the sunset, he kept saying 'lovely'. After a little while he asked to go back to bed and there he has been all night with me beside him.

Since 5am he has been breathing in cycles of deep noisy breaths followed by very shallow and pauses. That is where we are now. There is a bluish tinge to his lips and he is pale. For the first time he has wanted a blanket on and he is sleeping. He was very good and allowed us to use the large waterproof pads on the bed and did not make a fuss to get out of bed when he needed a pee, in fact he agreed afterwards that it was fine and didn't require a big effort to clear and replace from him or us.

We have removed the last bits of medical equipment from the room and put in a big copper bowl of orange gladioli which he loves and recalls with fondness from the Grand Hotel Sheringham where great bunches of them were arranged in the foyer daily on holidays as a boy before WW2. They look glorious.

He is now sleeping and breathing in cycles in which the pauses will get longer. As was said of the old king, his life is moving peacefully towards its close.

Bless you all for your thoughts and prayers and comments, they are very much appreciated

M xx

[Dandygal76]

Marmalade, it sounds peaceful and calm, just as you planned. You have been the most able and comforting wife throughout this and Louis has been amazingly gallant. My thoughts are with you and your family at this time. x

[WifeampMum]

So pleased that Louis was able to enjoy yesterday's sunset. Thinking of you and wishing you more special moments with Louis before he slips away. Wiping away a tear as I type this. Love W&M xx

[Guest]

Louis still sleeping gently in his winding down rhythm. We have listened to Gigli singing Una Furtiva Lagrima - so beautiful, the district nurse wept buckets.

I saw this today and thought it very apt for us all.

Let me come in where you are weeping, friend,

And let me take your hand.

I, who have known a sorrow such as yours,

Can understand.

Let me come in -- I would be very still

Beside you in your grief;

I would not bid you cease your weeping, friend,

Tears can bring relief.

Let me come in -- I would only breathe a prayer,

And hold your hand,

For I have known a sorrow such as yours,

And understand.

I wish you all a good and peaceful night while our beautiful vigil continues xx

[sandraW]

Its beautiful, Marmalade, beautiful words, from a beautiful lady, my thoughts are with you love sandrax xx

[Dandygal76]

Marmalade, that is a lovely poem and yes it is very apt. I hope your night is also peaceful and that Louis remains comfortable and pain free. My thoughts are with you as you have this last precious time with Louis. x

[Veema]

Lots of love and strength to you all.

Vx

[Proud Wife]

Dear Marmalade

All words escape me this evening other than to say, you are one enormously special, dignified and courageous lady to be able to post the way you have done today. I take my hat off to you.

My thoughts, prayers and best wishes are with you all tonight.

Sending oodles of love and kisses xx

[Didge]

Marmalade, sending you lots of love today xxx

[Proud Wife]

And so do I xxxxx

[PCUK Nurse Dianne]

Dear Marmalade,

Thinking of you at this time in your life. Thank you for sharing such amazing courage and sentiment with your 'forum family', I know others will gain from your strength.

Thinking of you all at this time, may Louis be peaceful.

With all our thoughts,

Pancreatic cancer nurses,

Support Team

Pancreatic Cancer UK

[Proud Wife]

Marmalade, I have just had an email from Leila aka FIFI who I am really happy to say is coming back to the forum once her account is activated. Until then, I will copy and paste for her in relation to posts that cannot wait and of course, she wanted you to know:-

"

> I wondered if you could please let Marmalade know I am thinking of her

> and Louis, and I think she is a beautiful person?" xxx

[Ant11]

Dear Marmalade, Like so many others have said, you write so beautifully and I for one find such comfort from this. Your support to us all is "priceless". Our beautiful Tracy passed over the divide 4 months ago and her peaceful passing with her loved ones was so similar with the breathing. Thinking of you all at this time. Annette xx

[jay]

Sending my love

Jayne

xxxxxx

[Guest]

What lovely comments, thank you so much.

I would like to be in touch by email with some of you but can't find anywhere on this forum to enable you to share my email address. Can someone remind me of how to do it?

Thank you so much PW for forwarding Leila's message, so happy she is coming back.

Louis is still here and still comfortable. xx