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Joined: Mon Feb 02, 2015 5:35 pm

Re: Don’t know where to start

Postby Veema » Mon Mar 05, 2018 8:32 pm

My husband did the big yawns...very strange.

Christine, could you get a bit more support from the palliative care team? Our hospice has a hospice at home programme where the nurses come into the home to help care for the patient...it might be worth checking to see if there's a similar service local to you. The trouble is, people always think of the hospice as end of life care and it's so not...they provide loads of useful things throughout an illness...courses, alternative therapies, counselling etc. It sounds like you're all worn out and it's not going to do any of you any good if you're hurting yourselves moving her.

My husband's blood pressure kept dropping close to his death but he actually had sepsis...has she been checked for any signs of infection?

The eating thing is a nightmare, when you know that they need to eat to get anywhere, but they just can't. Is there anything at all that she likes to eat or drink? I think I've mentioned procal powders before, but they really are great at getting some extra calories and protein into more or less anything. The fortisips aren't very palatable, but there are other supplements she can try.

Keep your chin up...it's hard work and we know exactly how you feel.


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Joined: Thu Feb 16, 2017 4:31 pm

Re: Don’t know where to start

Postby Veebee » Tue Mar 06, 2018 11:53 am

Hi Christine...I agree with Veema. It sounds as if you need more support. This should be put in place by your GP. We had regular visits from the Macmillan nurse from diagnosis. She would ring or call in the beginning and she referred us to Hospice at home as time went on. The support we had was really good and we had a 24 hour phone number to ring. I hope you get more help because you need it. I don't know anything about the patches or fortisip as Allan never had these. He was on liquid morphine and slow release morphine tablets and these kept his pain at bay. I really hope you can get more support in place. Vee xx

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Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Sat Mar 10, 2018 5:21 pm

Thank you for the replies xx And thank you to the nurses for the emails xx

They’ve started mum on hydrocortisone and fludrocortisone as well as the dexamethasone as they are concerned about her adrenal function. So far it’s not really made any difference but her BP is slightly better, still dropping when she sits up though.

She’s not eating and is only having at most two regular cup-a-soups a day (with a little salt added) with perhaps a biscuit now and then. She must weigh under 6 stone now and is basically in bed all day long aside from using the commode. She’s peeing fine now and is getting more fluids in at least.

There’s zero energy and aside from the commode she’s unable to sit up for even a few minutes. Her rib pain is very bad, mainly from laying down all the time. Her last BM went okay but we are all still on edge in case of a faint.

After her GP stopped her gabapentin entirely the hospice advised putting one dose back in at night because she had bad insomnia.

I don’t know if I should be pushing her to sit up a bit more, I am already spending most of the day coaxing her into having the soup and taking her tablets.

Is it normal to be this utterly, utterly weak? She’s not been on chemo for a couple of weeks now and is due a CT next week, a transport ambulance with stretcher has been booked. The hospice nurse is due out to us on Monday. We just want her to improve a little xx