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Re: Our Journey without chemo

Posted: Thu Aug 11, 2016 12:44 pm
by Didge
That's lovely. Glad he is peaceful. Xx

Re: Our Journey without chemo

Posted: Thu Aug 11, 2016 4:44 pm
by Proud Wife
I so wish I had your strength and bravery Marmalade. You are an amazing lady!

Re: Our Journey without chemo

Posted: Thu Aug 11, 2016 8:40 pm
by Proud Wife
Hoping your vigil is calm, peaceful and Louis is pain free, dreaming wonderful dreams.

Thinking of you xx

Re: Our Journey without chemo

Posted: Thu Aug 11, 2016 10:36 pm
by Sueoliver
Marmalade just to let you know I am thinking of you all. Sending you love and strength. Sue xxx

Re: Our Journey without chemo

Posted: Fri Aug 12, 2016 2:04 pm
by Marmalade
Another night has passed and Louis is still with us and apparently sleeping peacefully, how can one tell for sure? We are very much guided by his facial expression. Frowns mean pain or annoyance. He has not changed position or expression in the last 48 going on 72 hours except once when we wondered if he would like to move or change his position, he frowned immediately so we have left him alone since. Doc and nurses say there is nothing to be gained by disturbing him if he seems content, which he does.

We continue to potter around during the day, do a bit of tidying, bathe his eyes a little, damp his mouth a little. We also play his favourite music, read him headlines from the paper, read short stories, watch a bit of TV and leave him to rest in and between.

Suzie and I have discussed what we will do when he finally leaves us. Thankfully we agree that we will wash him and lay him out. My sister and I did the same for my mum. Does it offend to speak of these things while he is still here? We don't have the discussion in front of him but I don't actually think he would mind.

GP is coming later, on her day off!

Keep well and enjoy life,

Marmalade x

Re: Our Journey without chemo

Posted: Fri Aug 12, 2016 10:47 pm
by Dandygal76
xxx thinking of you all. xxx

Re: Our Journey without chemo

Posted: Sat Aug 13, 2016 11:07 am
by Proud Wife
It absolutely should not offend to speak of anything that concerns Louis' well being and best interests and I'm sure he wouldn't mind. You just carry on doing exactly what you are doing because you've been blinking marvelous. As for Louis......well, what an outstanding man! I think your story is going to give comfort to those who follow, who may decide not to go for chemo. It's amazing to see just how well Louis has done without treatment. Of course, everyone is different and it's a very individual choice but you have every right to feel so very proud of yourself and your wonderful man.

Lots of love to you all xx

Re: Our Journey without chemo

Posted: Sat Aug 13, 2016 12:33 pm
by Marmalade
Good morning all,

Firstly for DG, I wish you great happiness in your new home. Try not to torture yourself with feelings of leaving Dad, you are still close by and, because we can see you are a great family person and must have some of your Dad in you, we know you are doing what is right in the long term for your family. You will still be a great PC warrior and will still be on his team.

Now, my boy is very much as yesterday and has not moved. He is just sleeping. Suzie went home last night for a night in her own bed and some time with her husband and actually I quite enjoyed having Louis to myself. It's easier to manage now as he is not eating and drinking so there nothing to clear up and he does not have to be sat up and moved around. This morning I washed him and wet shaved him! He has always been clean shaven and I just know he would not like days of growth. I can't change his PJ's on my own but will do that with Suzie later. The advice to buy a baby toothbrush was very sound. His mouth is open so I have brushed his teeth with the spray designed to moisten his mouth, it's a sort of water and peppermint oil base so dampens the mouth longer than water and does not leave a powder residue like toothpaste. He still looks dreadfully poorly but less dishevelled and I hope he feels a bit fresher.

Suzie back this afternoon for the night then home again on Sunday evening as she has a medical appointment on Monday. Our GP thinks the end is nigh but frankly I have seen no deterioration over the last 72 hours and he has defied all predictions so far. He will go when he is ready and I will enjoy caring for him while he is here and be happy for him when his ordeal is over.

Cloudy here this morning and a bit of light rain! Hope it's good where you are and that you all have a wonderful day. M xx

Re: Our Journey without chemo

Posted: Sat Aug 13, 2016 3:02 pm
by jay
((((((((((Marmalade)))))))))
xxxxxx

Re: Our Journey without chemo

Posted: Sat Aug 13, 2016 3:19 pm
by Proud Wife
Lots of love SPECIAL lady xx

Re: Our Journey without chemo

Posted: Sat Aug 13, 2016 11:51 pm
by Didge
Sending you both love and peace xx

Re: Our Journey without chemo

Posted: Sun Aug 14, 2016 1:25 pm
by Marmalade
I am getting used to posting 'no change' messages. It seems incredible to me that despite no food or water for so long someone can still go on, or would even want to.

I had a bit of a wobble yesterday seeing my son in law stretch out his hand and hold Suzie's and then give her a hug. I realised of course that such signs of care shown by one half of a pair for the other were lost to me now and I went away and wept in self pity. I am not given to wallowing but I guess exhaustion and sorrow catch up eventually. I am better today and slept quite well last night. I do check on Louis but managed to go straight back to sleep each time.

A new nurse came today and he first words were 'Oh doesn't he look peaceful', he does, he looks just like he was having a bit of a nap except we know he was never painfully thin. It was a boast of his that a dinner suit bought in Kendall Milne in Manchester in 1957 still fitted him, it would hang off him now. The shave yesterday has made him look more like his old self and I suppose I have got used to his slow decline but looking at photo's of him I realise how terribly ill he looks now.

Still, my man is still here and I get another day with him. This morning I gave his room a 'good bottoming' as they say up North. Louis always quoted the biblical passage 'Martha, Martha thou art busy about many things' when I was cleaning and tidying. I think he likes me to be doing ordinary things around him, tidying, ironing, knitting, painting my toe nails or whatever else I would normally do.

Suzie off again tonight as she has a medical appointment of her own tomorrow so I get Louis to myself.

I hope you are all enjoying the sunshine and girding yourselves up for the heatwave !

Much love M xx

Re: Our Journey without chemo

Posted: Sun Aug 14, 2016 8:44 pm
by Proud Wife
Incredible doesn't come close! Just goes to show how very special your man is to defy the odds like this!

As to your wobble. Self pity - poppycock. I'm afraid it's just the grim reality of what's happening and what it's like when you lose your other half. Of course you must be totally exhausted, don't be too hard on yourself M, you have been doing such a marvelous job and your daily updates, just inspirational.

Hope Suzie's appointment goes well tomorrow. I wonder perhaps, is Louis waiting for his little girl to leave?

Lots of love to you all, as always xx

Re: Our Journey without chemo

Posted: Mon Aug 15, 2016 10:43 am
by Dandygal76
Your grief is natural, who would not feel that inner loneliness as they lose their partner. The thing is, it is so hard that the person who always got you through the bad times, comforted you and steadied the ship is not there for you now but is absolutely the one person you want during this most difficult of times.

It sounds like you could do with a little bit of special time on your own with Louis. Have a nice cuddle and get some comfort for you both during these precious times. x

Re: Our Journey without chemo

Posted: Mon Aug 15, 2016 7:17 pm
by Marmalade
Thanks ladies, You understand completely which is why we are all here.

Louis is still sleeping. Breathing is very shallow and irregular but nothing else has changed. Spent some of today gathering key documents together and in the process chatting about some of the big events in our family history. Found Louis fathers naturalisation papers which were fascinating. Nothing else to report. Suzie is back and we are settling into another evening of crosswords and tv.

Much love to you all, M x