Our Journey without chemo

[Dandygal76]

Sometimes I find idle conversation is the best of things around all this PW. Enjoy the garden. x

[Proud Wife]

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

[Marmalade]

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

[jay]

Hugs Marmalade and Louis, so glad he's enjoying a beer.
love Jayne
x

[charney]

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

[Dandygal76]

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

[Dandygal76]

Hey Marmalade, I hope everything is calm and peaceful. Thinking of you. x

[Marmalade]

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

[jay]

Massive, massive hugs Marmalade
loads of love Jayne
xx

[Didge]

Feeling sad for you xx

[Proud Wife]

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

[Marmalade]

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

[Dandygal76]

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

[Didge]

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

[Marmalade]

Oh thank you Didge and DG, I thought it was just me xx