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Reaching out

Lisa Kelly

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Oh how I remember the DNR request the lovely young district nurse was in the bedroom with my hubby when her eyes filled with tears and she said to me come out to the kitchen I can't ask you in front of Jon but I think we have to have a DNR in place this reduced me to near histerics as we had been married for 51 years and together for 4 years before that and he had only been diagnosed 8 weeks before ! I said I can't agree to that but there was also an out of hours GP there and he said it won't be you agreeing to let him go it will be the PC but it would be the kindest thing to do for him ..... Still sad 18 months later but life does go on and you deal with each day as it comes but my biggest rant is still PC that Bloody Disease .

Lisa stay strong and don't give up hope !

EmmaR x

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I despair that we live in such a regulated age that this has to be asked. For years doctors just did their stuff. I don't believe asking these questions is right. It causes lots of upset. People can ask themselves if they want their feelings known, otherwise it should be left to common sense when the time comes.

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Thanks for people's kind words, best wishes and support.

Dad's appetite is improving, likely due to the anti depressant the palliative nurse team advised, but he still can't really eat. A mouthful and he has had enough.

Still taking sips of water but his urinary output is getting less, now looking at max 400ml in 24 hours. The urine is a dark orange colour and today we noticed some orange bits in it too...we will mention this to the nurse tomorrow, I assume this is due to him not drinking enough and the possible damage to his liver (be it an infection, blockage or secondary tumour).

He is now having the ascities (excuse spelling?) drained daily as opposed to every 2nd day. In the last 4 days he has had just less than 9l drained off of his abdomen.

Has anyone else got experience with the ascites? Is it normal for the amount to increase? There's no way he is taking on that amount of fluid?,

As ever, all comments taken on board and greatly appreciated.

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Hi Lisa

My Dad is due to have his first ascites drain next week. His doctor said the amount to drain is not related to the amount of fluids he drinks. The ascites is fluid made by the body for example if the cancer cells irritate the lining of the abdomen and make it produce too much fluid or if the liver is damaged or if lymph glands are blocked.

I hope that the draining gives your Dad some relief and that he's comfortable.

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Hi William, the draining does bring relief it just last for shorter periods of time now. Mum manages the draining at home as dad has a rocket drain fitted, this allows for regular draining. My mum is a pro at it.

Initially,Mae were told to not take more than 2l every few days (as it could affect BP and cause shock), anyway it's now 2l mostly on a daily basis. GP and nurses are ok with this as it means dad is more comfortable.

I hope your father's drain goes well and it too brings relief for him. Before dad had the permenant drain fitted, he had it drained twice as a day patient.

Thanks for posting x

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Roller coaster!

As I have posted before,mad is getting weaker by the hour. Yesterday at 8pm he felt he needed the loo, so 2 of my brothers assisted him from his bed to the bathroom. As they made his way back, dad's legs gave way and he came over all weak and distressed. He felt sure that it was the "end". We gathered at his bedside, shared our love and memories etc...we also made sure it was ok for him to let go if he felt it was time. Less than 2hrs later he became more responsive and said he was proud of us and (I quote) "pleased none of the 6 of us had ever landed on. Jeremy Kyle episode..." Rapturous laughter rang through out the bungalow.

Through the night and today it has been more sleeping, with talking in his sleep, reaching for stuff, being a little confused but still responding to us. Very little fluid intake but he seems comfortable enough. He has been home a week now and we are still waiting for a Macmillan nurse to visit, we just want reassurance that what we are doing is good enough etc and, if possible, an idea of the probable time that we have left together.

Thanks for all your kind words and thoughts, they do provide us with comfort and strength.


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  • 3 weeks later...

Sadly, my dad passed away on the 11th August surrounded by his loving family. His wishes were followed throughout his last 3 weeks of life, we find some comfort in this. The last 3 days were exceptionally traumatic but the palliative nurse team were great. We hope that he didn't suff and wasn't in pain but we won't ever truly know. We do know that he knew he was surrounded by his loving wife and his children.

This awful disease has taken another husband, dad, granddad, brother, uncle and friend...

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Very very sorry to read about your lovely Dad.

I hope in time to come, you can take comfort from the fact that you were with him when he passed.

Incredibly tough times ahead, I hope you have a loving family that can guide you through.

Leila xxx

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