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Mum has deteriorated so much that I am shocked and constantly on edge! Her legs and feet are so swollen and both leaking! The district nurse dresses them everyday but she is struggling to get trousers on over them and certainly can't get any shoes on! She is also struggling to move around! Her stomach is large as well. Mum is also suffering from diaorrehea which is bad and she is having many accidents! She also has a dreadful cough!

She can't go on like this but she has said she will not go to hospital and I think she means it! The community hospice nurse went to see her today but I wasn't there so I'm not sure what they chatted about! I will find out tomorrow.

My Mum has fought this disease for 18 months and has been positive and determined but it looks like the disease is winning now! I cannot believe this is happening so quickly and how awful it is. I am taking it a day at a time!

Sorry for the sad post but this has been such an up and down journey which I sadly believe is coming to the end!

Love to everyone,

Sue xxx

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  • Sueoliver

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Sorry to hear about your Mum, she has put up such a brave fight but this bloody awful disease is relentless.

It is up to your Mum where she wants to be, and no one else can make that decision for her, but I understand how worrying it must be for you Sue. I am sure you will get lots of support if she does stay at home or perhaps the nurse may have persuaded her to go to the hospice if only for a few days to see if they can help with her legs and stomach, and perhaps slow the diarrhoea too. They really are amazing places, and the staff are also very good at getting things sorted quickly if they can.

Thinking of you, try and take care of yourself too love sandrax xxx

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Sorry to read this about your Mum Sue. It must be so awful for you both. I know just alone how the diarrhoea side of it is, as Dad had severe diarrhoea all the way through his illness, which kept him housebound, and hospitalised on more than one occasion. To have everything else on top, well, it must be truly awful for you both.

From what I have read, you don't seem to have great GP's or great hospital staff. I hope the hospice nurses are much better and are looking after your Mum with the greatest care and respect.

Are you regularly in touch with Jeni and Dianne, as I do believe they can tell you who to deal with with regards to your Mum's swelling?



Leila xx

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So sorry to hear your mum is so poorly. Hospice staff should be able to allow her to stay at home if that is what she wants, and it seems it is! however, there may be some symptoms they can't handle at home. Rob was in a hospice ward (rather than an actual hospice as that is all he was offered) for the last two and a half weeks but that was his choice as he didn't want to die at home because of his children. He could have managed at home I think if that was what he wanted but all cases are different. I do hope your mum is as comfortable as she can be and that the hospice nurses are able to fulfil her wishes. As you say, particularly difficult at this time of year xxx

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Thankyou everyone I am glad you are all there! Mum is much the same and it is her wishes to stay at home as long as she can and then go to the hospice. We have a wonderful hospice community nurse and district nurses. You are right Leila the DR's need some education!

Love to everyone,

Sue xxx

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Mum has been admitted to hospital this afternoon. She has a terrible cough which the DR thinks may be pneumonia and she is being sick! Bringing up brown/yellow bile! She actually said to me she doesn't want to be here anymore! Her wishes are to go to the hospice if they can't treat her!

Tough times,

Love Sue xxx

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Sue,


Very tough times. Sadly, I know your pain and I am thinking about you both often.

I hope for your Mum that she gets the care that she needs and deserves. Have you made plans at the Hospice to have a bed ready for your Mum? I know I had to wait a few days before a bed was ready for Dad, but sadly by then he was too ill to be moved.


Thinking of you and your lovely Mum.


Leila xx

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Sue,

Just wishing I could do more to help, hospital is not the best place, but if it is pneumonia or even pleurisy, its probably the best starting point. We went through the hospital palliative care team,they seem to have priority at least were we where they did. They sorted a bed out for Trevor within 24 hours, as usual you have to push push but I know you are used to that now. We were in the specialist Oncology unit though and not just the "hospital". Thinking of you all love sandrax xxx

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Thankyou Leila and Sandra for your messages. Mum was slightly better yesterday afternoon. Her blood sugar was back within normal range and the antibiotics seemed to be kicking in! They have managed to stop the vomiting and she has a syringe driver with anti sickness drugs. Still has an awful cough!

The pallative DR visited while I was there and went through everything. She really seemed to think they could treat the symptoms although she said how frail Mum is.

Let's see what today brings. This is emotionally exhausting!

Love to everyone,

Sue xxx

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Hope your mum improves again today and that she is able to enjoy the time she has left. Sounds that you have a decent palliative care team who will work to treat they symptoms as best they can. Thinking of you every day xxx

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Yesterday had a call saying they were planning on getting Mum home today with a care package! Went into the hospital at 3p.m and took one look at her and knew something was seriously wrong! She was grey and couldn't breathe properly! Called the nurse who said she had been fine! At this point everyone came! It transpired the fluid was in her lungs and her heart was erratic! After several scary hours they stabilised her! The DR said the next 24/48 hours are critical!

She had a settled night and the plan is for her to go to Woking Hospice today.

My heart is broken and I'm wrecked! Can't believe it is Christmas Eve!

I do hope everyone out there has a peaceful Christmas and thinking of you all.

All my love,

Sue xxx

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Oh Sue,


I am so sorry, your lovely Mum has had nothing but a constant battle. I hope the move to the Hospice is comfortable and I hope the care there is exceptional.


I really have everything crossed that you can spend some time together tomorrow.


This disease is disgusting and relentless.


Thinking of you both so much.


Leila xx

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Sue,

All this is terrible at any time of year, but at this time of year its doubly difficult. But what a fighter your Mum is, I hope she gets settled at the hospice soon, if is anything like ours it will be beautiful. I just hope she rallies again and you get to spend time with her over the holidays.

Thinking of you all love sandrax xx

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Better to be in the hospice than hospital I think. Hopefully your mum will settle there, she will be well looked after and you can visit whenever you like. Thinking of you over Christmas, love Didge xx

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Quick update while I'm sitting with Mum in the hospice. Mum is comfortable and not in pain we had a fairly ok Christmas Day! Opened presents with her in the morning. She managed to eat some Christmas dinner. Yesterday and today Mum has mainly slept only talking when you ask her something. She isn't hungry but has managed some soup.

She is on oxygen but no other intervention.

I hope all of you managed to have a peaceful Christmas.

Love to everyone.

Sue x

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Sue,

Lovely for you all that Mum managed to celebrate a bit of Christmas, just sending best wishes love and a big hug to you all, your Mum is certainly doing it "her way" love sandrax xx

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