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Our Journey without chemo


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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

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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

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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

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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

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Yep totally get that. Too hot in the garden and felt compelled to come inside even though I'm a sun worshiper. Going to try to do some admin stuff until it cools down a bit.


Hope Marmalade, Louis and co having a peaceful afternoon xx

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Just had to write this.


Louis has had some pain this morning so the District nurse, on advice from the doctor daughter gave him a 'stat' dose of diamorphine and a bit of relaxant. Immediately after she left Louis asked for a beer and we gave it to him. Since then he has been sitting up smiling benignly at us all. "I feel great" he whispered. "that's because you are off your face on beer and heroin" the daughter replied and he laughed like a drain!


M xx

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Hi I lost my husband just over two years ago to this horrible disease

although I haven't posted for a while I have always hovered and read all your stories.

I would just like to say what amazing people you are, Marmalade my heart goes

Out to you, yr love for Louis shines through your posts, what an amazing man he must be.

PW your continued support is truly wonderful and Dandygirl your fight for your dad is

Inspiring. I have followed your posts and just needed to say what wonderful support you

Are for each other


Big hugs

Cheryl

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Cheryl, it is so lovely you came back on here to talk to us and say such wonderful things. I never want to be your side of the divide but if I am then I am resolute that I will pop on here like you and Sandra and everyone else and wish the best for all. One day PC prognosis will change and won't be so helpless but you know yourself how much it means that you come on here and just say what you have said.


Marmalade... I hope you are okay. You are always in my thoughts. x

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Hi everyone, tired today but know you are all thinking of us.


Poor Louis has been having some pain necessitating two changes to his driver and some bonus doses. The increased medication is having a soporific effect and he is sleeping most of the time. In his pain and waking this morning he asked me how he came to be in this mess and I had to explain that he had cancer and was very very ill which is why he couldn't move or talk very well. He eventually remembered and said he was grateful to us for caring for him. The tears started to run down his face and he wept for us and for his predicament. It was a low point for us all.


He is now sleeping peacefully and suzie and I are sitting with him watching Sharpe as usual and listening to him sleep.


much love xx

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I too shed more than a tear or two reading your latest post Marmalade, particularly for Louis. I only hope that each time he wakes now, you don't have to explain again. You have all done so very well I suppose it was inevitable that you'd get a low point.


Keep strong lovely ladies. May Louis have a peaceful nights sleep xx

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Good morning all, it's very early but not able to settle after changing Louis' bed earlier. He is fast asleep and barely roused during the quick change, we have it off to a fine art now.


I have lots of nonsense going through my head started by well meaning district nurse. She asked me if I had chosen an undertaker yet and advised me to keep the number handy as I may be too distressed to think about it later. Had similar conversation with the lovely gp a week ago. My daughter thinks it's fine and them being practical and supportive. I don't.


I went through all the practicalities on my careers course including the order of play. They emphasised that there was no great rush and we should not feel pressured in the first few hours of loss. We planned his funeral and made a note of his preferences early on so we did not have to think about it again. I have no wish to be morbid or delay unduly but there will be time enough for everything and everything in its time. For now my precious Louis is still with me, that's what matters and I don't find it helpful or supportive to have a nurse I have never met before and who doesn't know Louis reminding me to choose an undertaker! Clearly others do or they wouldn't do it.


Now I have that off my chest I might have a nap now.


Love to you all x

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I hope you did manage to get a nap Marmalade. I am sure the district nurse did not mean to offend you, I think that they can get a bit immune to all the emotions around this when they see it day after day. I would though also feel the same as you and be parked firmly in the 'none of their business' camp.


I hope Louis is peaceful and that he does not become distressed again. Even the bravest of warriors need to shed a tear sometimes though.


Much love. x

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I don't think it's OK either. I think it's a lack of understanding of ones state of mind when a loved one is nearing the end and strangely afterwards people often switch into a very matter of fact and organisational frame of mind and of course that is the time to step in if needed. When things are badly handled or timed I have always found it down to ill-judged training. Why anyone would anyone think that a wife spending her last moments with a much-loved husband would want to be interrupted and asked if she has chosen an undertaker is beyond me! Crass beyond words X

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And for all those who don't want to think about this beforehand you can't do better than Emma Freud's piece how to do a funeral from the Guardian in 2014. I posted the link before but just Google her name and funeral and you will find the link. This can be read when the time is right for you, not someone else. It has some gentle humour along with some very food advice x

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Oh my goodness Marmalade, it certainly was not just you. How terribly thoughtless and inappropriate. I think Didge has summed it up brilliantly over on the previous page. I would have been so very upset in your shoes. You have absolutely no need to even think about it at this present time and I'm only really sorry that someone has been so stupidly insensitive at a time like this.


Looking forward to chatting to you over on Facebook. Will be lovely to ask the questions that can't be asked on a public forum!


Much love to you, Louis and Suzie xxx

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Pushing this thread to the top.


Hope you and Suzie manage to get some rest tonight.


May I wish each and every one of my forum family a peaceful night. Sleep well x

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Good morning lovely people,


Good bits - Louis slept quite well and so did we. Had a nap yesterday evening while Suzie kept Louis company. Woke and checked him at about 2am and 4am but went back to sleep each time so feeling refreshed. Am in touch with PW by email and FB, I have asked support to give my email address to the posters on this thread if they would like it.


Not so good bits - Although mostly asleep Louis is quite worried about his situation when awake, he has a medicine spoonful of champagne if he asks which is lovely but when we are alone he tells me he is worried about not being able to move or speak properly (very dry on waking and it takes loads of drips of water and mouth spray before he can speak even in a whisper) he also worries about how he will actually die. It's clear to me that when he is awake and can express himself he is worrying. Quite often he is quiet and appears to be asleep but when I speak to him he says he is thinking about things. He also has very painful gout in both wrists now, there is nothing to be done as hydration and anti-inflamatories are the only medicine and the likelihood is that anti-inflamatories will be the last straw for his damaged kidneys and he has decided no IV fluids. The options are clear. Keep the medications where they are and just keep reassuring him and trying to keep his joints comfortable or agree to more medication which will combat his pain and keep him asleep. I very quickly have to say that he seems very peaceful when asleep and tells me he has lovely dreams. I also have to admit that when awake, he frowns most of the time. I'm going to think about it, the Doc is back from her holidays and here later.


The sun is shining so I hope that we can all have a few moments to catch dome vitamin D today. Much love to you all xx

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