Mum's diagnosis

[sheena]

Thinking of you so glad you shared Xmas with your mum .sending huge hugs xxx

[Sueoliver]

Quick update! Mum is stable at the moment eating a little and still enjoying a cup of tea! She is fragile and still on oxygen. She sleeps most of the time but does respond when you talk to her.

We have got through Christmas Day now I am praying nothing happens on New Years Day!

This is hard very hard!

Love to everyone,

Sue xxx

[Ruthus]

I am thinking of you. It must be incredibly difficult. I hope you can take comfort from the fact that your mother appears to be comfortable (I hope I'm correct in saying that), and also take comfort that you have been there with her every step of this horrid journey. No doubt all your love and support would have been so invaluable and reassuring to your mum. Lots of love Ruth xx

[sandraW]

Hi Sue,

It is so hard, but we just have to do it, no option is there, you have been such a great support to your Mum and she obviously doesn't want to leave you all.

Lets hope your Mum just sleeps and drifts away, she certainly is one strong lady, and at least you can all spend quality time with her, so glad she is not in any pain, sending love and strength Sandra xxx

[jay]

Thinking of you all Sue, glad your mum isn't in any pain, it is so hard to watch but you have been every step of the way with your mum,

love Jayne

x

[Didge]

Thinking of you Sue and hope your mum gets through New Year xx

[PCUK Nurse Jeni]

Thinking of you Sue at this difficult time.

Jeni.

[Guest]

Hi Sue,

Really hope you and your Mum had a comfortable and happy new year.

How is she doing?

Leila xx

[Sueoliver]

Hi Leila,

Mum is still much the same! Eating a little and talking occasionally. Her eyes are closed most of the time and I'm not sure if she is sleeping or just prefers it that way. She does sleep a lot though! It is a strange time as we go in sit with her every day and she seems comfortable and peaceful but nothing much happens or changes. We were told the day before Christmas Eve she was critical,frail and weak and here we are on New Years Day!

I am finding it hard as I feel like I'm waiting for the inevitable and I just don't know when that is! I am just going through motions but I don't feel like I'm anywhere!

I think my shingles has returned which isn't great so a trip to DR's on Monday! I am so glad Christmas is over to be honest although I feel bad for saying it!

I hope everyone had a peaceful new year.

Love Sue x

[Guest]

Hi Sue,

Pleased to read your new year was ok.

Is your Mum on any medications?

Sue, it is very hard, you never know what each day is going to bring. It's precious but very scary. I know when I was with Dad in hospital, it came to me one day that the next time me I would leave the hospital, my Dad wouldn't be with us.

I did treasure every moment though.

It will be a great comfort to your Mum that you are there. Even is she asleep, she will still know you are there, I promise you.

I think it is extra hard when you are an only child, you have no one to share the care, the pain with. But that's why we are all here for you. I care very much, as does so many more people on here.

Leila xx

[Sueoliver]

Thank you so much Leila for those lovely words. Thank you to everyone for the continuous support. Mum is still the same and all I can say is this is hard...very hard! I am hoping tomorrow I can talk to the DR's !

Love to everyone,

Sue xxx

[sheena]

Keep going my love you are doing an amazing job ,how lovely to spend time with your mum so brave sending huge hugs to you xx

[Sueoliver]

Well the last couple of days have been bittersweet and trying to say the least! Mum is quite stable in the hospice now even though she has a lot going on with different symptoms and problems and things could change again! The hospice are saying they can't just keep someone there who is stable indefinitely so they are looking to send her home with a massive care plan or to a nursing home! Mum can't actually do anything herself and could only go home once an assessment on the bungalow has taken place and if they can have a hospital bed. There would be carers 4 times a day and possible night carers 3 times a week! This isn't ideal but she wants to go home preferably. The responsibility on my stepdad , who is 86, is enormous!

If she deteriorates again they will reassess and keep her at the hospice! Mum told them she wants to stay there and is happy there. The care is fantastic!

It is great she is stable but it is also an awful situation at the same time. I am in turmoil and I can't really believe this is happening! The Dr's don't seem to think anything is going to happen in next couple if weeks but have also said things can change again suddenly. I truly think if she goes home something will happen and it will be a 999 ambulance call again and she doesn't want to go to hospital.

Mum has had no chemo for 1 year and is currently having no intervention!

I feel for her as she is totally with it and can make her own decisions. She must have felt awful yesterday when the DR's were saying all this. She was very quiet today and kept her eyes shut most of the time. What an awful situation!

Much to love to everyone,

Sue xxx

[Didge]

I am confused as to whether your mum wants to go home or not but if she wants to go home hopefully that will be possible. Rob was in the hospice ward for nearly 3 weeks before he died and the week before they were talking about discharging him but I knew it wouldn't happen. Even in hospices they don't seem to have much knowledge of the nature of PC. On the other hand your mum has defied the odds so many times. Try not to stress too much, go with your mum's wishes and if she is sent home against her wishes hopefully the care plan will be enough for her to be comfortable there x

[brodders]

Hello Sue, I haven't been on this for a while. I am having a break from my face book addiction but I will message you via that. Please contact me anytime. My mum wanted to be at home and it was the right decision. My dad and I looked after her, with various nurses and carers popping in. Your precious mum sounds calm and at peace as was my mum. I am sure you will have more time and happy memories to come though XXXX

[allyc1]

Hi Sue

I really feel for you as we were in the same position as you a couple of months ago You know the end is coming and its just when? It's the worst thing we will have to ever do, and its devastating to watch. My dad died at home, he was like your mum just sleeping more, he wasn't aware when he died, or at least I don't think he did, he looked peaceful. I am thinking of you and sending hugs, you are not alone even though it feels like you are at the moment.

I am still grieving 8 weeks on, I'm hoping it will get easier with time. It doesn't help with the fact how the Hospital greatly dad before he died, and the way they told him! They spoiled any quality time we had left as a family, as he was so devastated at the news he couldn't take! I still have no idea why they have to inform the patient as much as they do, and sometimes very carelessly.

Thinking of you Sue

Alison

[Sueoliver]

Thankyou everyone I know you all understand! Mum is still the same although a little subdued since the DR's want to send her home! She wants to stay in the hospice.

They took a set of bloods today to see what is going on with the fluid in her stomach and to check liver and kidney function! I can't see her having the fluid drained now I think it would cause more problems!

This whole situation is a nightmare for everyone involved! The person I feel sorry for is Mum as how must she feel! Occupational therapy haven't contacted us yet to assess the bungalow so at least she will be in the hospice for a few more days!

Does anyone know if chocolate interferes with creon tablets? The pharmacist has told the hospice it does!

Love to everyone,

Sue xxx

[Guest]

Hi Sue,

What is happening with your Mum now? Is she home now? I think as for waiting and wondering when the time is coming, you will know. You just feel it in yourself. I can't explain more than that, you just know. You are being brilliant Sue. Keep being stong.

Leila xx

[sandraW]

Hi Sue,

No idea if chocolate interferes, Trevor ate a fair bit of it, but I suppose its because of its high fat content, anything with a high fat content will interfere with, counteract, the creon. When Trevor's blood sugar was high, he craved sweet things, which I could never get my head round but the diabetic nurse said that is just what happens.

I understand completely how scary it must be for Mum and you to think of her coming home, but I am sure they will put a complete care package in place for you. The hospices seem to have all the resources necessary to do this, its such a shame if she feels more secure in the hospice that she is unable to stay, but most places seem to have a 4 week? maximum stay plan.

I hope you get it all sorted and sending you more love and thoughts, sandrax xx

[Didge]

I think your mum is safe from being discharged for a while as I'm sure occupational therapy will take ages assessing her home and then ages before any adaptations can be made, and although hospices are not supposed to take people for long periods, understandably, I am sure we were told that there were no actual limits and if someone is nearing the end and too ill to go home, they would be kept there, no matter what the guidelines say are 'maximum' length of stay! As to chocolate 'interfering' with creons, it might just mean that she will have to take extra creons. I have just looked it a creon company website and it lists doses for chocolate gateaux (the highest dose list!) so clearly it is not banned but must be 'catered' for in the dosage! x

[PCUK Nurse Jeni]

Thanks Didge.

No Sandra, high fat content does not "counteract" creon at all - it just means that you need more creon to be able to digest it.

So, Sue, nothing wrong with chocolate at all - just need to make sure creon is taken with it, otherwise, symptoms could reappear.

Kind regards,

Jeni.

[sandraW]

Hi Jeni,

Thanks for that I think that's kind of what I meant, just didn't put it well. sandrax

[Sueoliver]

Thanks everyone Mum is eating chocolate again!

We had a deterioration yesterday as the DR's feel she is unsafe to get out of bed at all. The tops of her legs are so heavy with fluid! This has really upset her and the indignity of toilet issues. She has pads on the bed and has to go on them! My Mum cried yesterday! She has started saying things like "do what you want with me I don't care anymore" .

To say this is heartbreaking is an understatement! My Mum is so with it and knows everything that is going on!

How much more does she have to go through? This is just cruel now.

Sending lots of love to you all out there.

Sue xxx

[Guest]

Sue,

So pleased your Mum is eating chocolate. If that is your Mum's pleasure, then she should eat as much as she likes. Not many people know about creon, you do, you look after your Mum.

I'm sorry for what your Mum is saying, I know so much how hard that is to hear, and see, and it completely breaks you. Our strong parents that have raised us, are now so fearful and so tired. You are doing such a good job Sue, you must know she loves you very much.

I read something in the paper this morning, " you never know a moment is precious, until it is memory ".

Thinking of you Sue. Keep fighting.

Leila xxx

[sandraW]

Sue,

Such harrowing times for you, really sorry to hear what mum is having to cope with, and you too being there. unable to do anything except support her. Stay strong Sue, you can do it, sending love, take care sandrax xx