Feeling Out of Place
When I got here to the hospice on friday, it was so different from the daycare setting and seemed really clinical but now I've made my messy impression upon my bed area it feels more like home. it drives one of the nurses mad as she dislikes clutter!! I just wanted my pics up of the family and the cards on display and the helium balloons and flowers around but she thinks it's messy!!!
I felt so well and as the hospice puree the food in the kitchen here, I can have a normal adult diet pureed. Milky rice pudding and raisins pureed are lovely so is rolyploy and custard puree!!! As I don't like gravy that much, this is the area where I struggle but now they puree it with soup instead so feel as if I'm getting some fruit, fibre and vegetables. I wasn't sure what was in ham puree or beef puree - all one consistency and same colour. If it is pureed in the hospital kitchen, it arrives in a pretty, piped, dried out fashion with gravy all over and tastes like how I would think wallpaper paste tastes
It's different here than i thought as has 5 x 4 bedded bays plus 5 side rooms. It was very disconcerting to find that a lady had died in my bay in my bed about 4 hrs before I arrived and it certainly worried me as it was not how I imagined it to be from all what I've been told about hospices. I've talked it over with the nurses, the special hospice nurse and social worker and doctor and feel that when my time comes they will do their utmost to keep to my wishes in a single room. It would seem so wrong for my family and friends to see me at the end in a bay. It's not what I or they want and I was looking forward to annoying any visitors with my ipod being on all the time as well!!
I had felt so well here upto today, that I felt a fraud not helped by the senior house doctor saying they didn't normally take patients like me. today, as predicted 7 days after finishing rads, my throat burns and feels constricted as does my oesophagus and it feels as if someone is sittting on my chest. Breakfast was painful this morning and the mug of tea also a difficulty so trying not to panic how worse this will be. Dare I say this - my skin is holding on and only looks slightly pink - probably fall off next week now.
I've had some oromorph and if it worsens I know they will increase the long acting morphine tablets I take. Most of my medication is now in medicine form and most taste OK apart from amytryptylline which is so bitter. I know why as it is dangerous in overdoses but it really is bitter and I only have 30mg!!! They started me on a new nerve pain tablet which has helped but it seemed to help at the same time as the aromotherpay did so don't know which did the trick. They stopped me using the heat pads to my back cos of the danger of making any radiotherapy burns worse so that was a blow but the tablets seem to be working. It would be nice to use Had really bad night as well as a lady who came in yesterday afternoon became confused and aggitated overnight, fell out of her chair as refused to go to bed. Said she had pain but refused medication and kept banging her crutches on the floor. Good job I'm on steroids as it is keeping me awake. I was the only mobile one so seemed to be the one who kept getting things for her and I'm supposed to be here for a rest. Know they will sort out her problems if she will let them but she seems either unable or unwilling to co-operate.
Another thing we need to look at incase I get confused so hubby or other relatives can take control so I don't distress others.
Went onto the secondary breast cancer forum chat room last night at my inlaws to talk about how to explain to children you've got secondaries. Very useful but sad and there is no consistency of help in schools etc which seems so wrong and no central registry for women like us to access. The forum members have all helped each other and it was at our long thread that made the charity have a special chat session.
It also made me cross as I had made an hour's podcast about living with breast cancer secondaries around november time and they only broadcast about 2 minutes worth of me prasing their forum so have asked them to reevisit my podcast and see if any of it can be transcribed or rebroadcasted so there is some little bits of info there about how we coped or not coped.
Thanks inlaws for bringing me to and fro and letting me use the computer - much appreciated.
Now off to see what will happen with dinner!!
When I got here to the hospice on friday, it was so different from the daycare setting and seemed really clinical but now I've made my messy impression upon my bed area it feels more like home. it drives one of the nurses mad as she dislikes clutter!! I just wanted my pics up of the family and the cards on display and the helium balloons and flowers around but she thinks it's messy!!!
I felt so well and as the hospice puree the food in the kitchen here, I can have a normal adult diet pureed. Milky rice pudding and raisins pureed are lovely so is rolyploy and custard puree!!! As I don't like gravy that much, this is the area where I struggle but now they puree it with soup instead so feel as if I'm getting some fruit, fibre and vegetables. I wasn't sure what was in ham puree or beef puree - all one consistency and same colour. If it is pureed in the hospital kitchen, it arrives in a pretty, piped, dried out fashion with gravy all over and tastes like how I would think wallpaper paste tastes
It's different here than i thought as has 5 x 4 bedded bays plus 5 side rooms. It was very disconcerting to find that a lady had died in my bay in my bed about 4 hrs before I arrived and it certainly worried me as it was not how I imagined it to be from all what I've been told about hospices. I've talked it over with the nurses, the special hospice nurse and social worker and doctor and feel that when my time comes they will do their utmost to keep to my wishes in a single room. It would seem so wrong for my family and friends to see me at the end in a bay. It's not what I or they want and I was looking forward to annoying any visitors with my ipod being on all the time as well!!
I had felt so well here upto today, that I felt a fraud not helped by the senior house doctor saying they didn't normally take patients like me. today, as predicted 7 days after finishing rads, my throat burns and feels constricted as does my oesophagus and it feels as if someone is sittting on my chest. Breakfast was painful this morning and the mug of tea also a difficulty so trying not to panic how worse this will be. Dare I say this - my skin is holding on and only looks slightly pink - probably fall off next week now.
I've had some oromorph and if it worsens I know they will increase the long acting morphine tablets I take. Most of my medication is now in medicine form and most taste OK apart from amytryptylline which is so bitter. I know why as it is dangerous in overdoses but it really is bitter and I only have 30mg!!! They started me on a new nerve pain tablet which has helped but it seemed to help at the same time as the aromotherpay did so don't know which did the trick. They stopped me using the heat pads to my back cos of the danger of making any radiotherapy burns worse so that was a blow but the tablets seem to be working. It would be nice to use Had really bad night as well as a lady who came in yesterday afternoon became confused and aggitated overnight, fell out of her chair as refused to go to bed. Said she had pain but refused medication and kept banging her crutches on the floor. Good job I'm on steroids as it is keeping me awake. I was the only mobile one so seemed to be the one who kept getting things for her and I'm supposed to be here for a rest. Know they will sort out her problems if she will let them but she seems either unable or unwilling to co-operate.
Another thing we need to look at incase I get confused so hubby or other relatives can take control so I don't distress others.
Went onto the secondary breast cancer forum chat room last night at my inlaws to talk about how to explain to children you've got secondaries. Very useful but sad and there is no consistency of help in schools etc which seems so wrong and no central registry for women like us to access. The forum members have all helped each other and it was at our long thread that made the charity have a special chat session.
It also made me cross as I had made an hour's podcast about living with breast cancer secondaries around november time and they only broadcast about 2 minutes worth of me prasing their forum so have asked them to reevisit my podcast and see if any of it can be transcribed or rebroadcasted so there is some little bits of info there about how we coped or not coped.
Thanks inlaws for bringing me to and fro and letting me use the computer - much appreciated.
Now off to see what will happen with dinner!!
Labels: hospice, pain, talking to children about death
posted by dippykate @ 10:23 AM
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