Anne
Your post is really helpful to me. Thanks.
Jane x
deleted…for no other reason than having 2nd thoughts on posting about my Mum’s death on a public forum.
x
Belinda I understand about the deleted post…like you I try to be cautious about writing about other real people on here.
I came back to the hospice on Monday morning…going home tomorrow now they have got gaberpentin up to maximum dose. My pain is better…she says cautiously…I can walk further without pain. I am though going to talk to an anaesthetist about a nerve block…though don’t like sound of one. Anyone had one (Dawn your story helpful and scary!)
Both the women very ill in my bay had died by time I returned, and yesterday someone else died behind the curtain opposite me. I found that really upsetting and the staff acknowledged that…had a cry with one nurse who said she never gets used to it…
Jane
Hi Jane,
I am so glad that you are getting your pain under control. Also the side effects of your chemo are manageable. A ‘comfy chemo’ now that is worth celebrating.
Sorry to hear of the ladies in the hospice that have died, there is no shame in shedding tears, just wish that a bloody cure would hurry.
I managed to cook dinner tonight and drink a glass of red, all I need now is to find my legs and get walking
Love Debsxxx
Hi Jane…I’ve been looking out for a post from you knowing you were back at the hospice this week. I hope this new improvement continues for you.
I’m sorry to hear the other women in your bay have died, before my diagnosis I had no idea there was so much sadness and illness in so many other’s lives… all around us.
x
Hi Jane…Sorry I have not got a lot to say, but thinking of you and hopefully you will get the pain relief that you need, I am finding it really hard to put the words together … and it is even harder to actually admit that we are more ill than we think we are because if we admit to that it seems that we are sort of giving up to it which we just cant do!!! Tonight Ive been out with out with a couple of mates and been downing vodka and coke alnight and I feel I could fight the world… I wasnt going to go (had Taxol today) but glad I went! When they bring out the drinks to you just accept them it makes me feel better I hope it works for you. (by the way Im not an alcoholic lol but if why who cares!!!I hope this makes sense. Take care.
Love
DebsHx
Hi Jane,
Sorry I haven’t posted for a bit but have been thinking of you and your pain and also treatment.
I am pleased that your pain is starting to get under control and so sorry you have been around 3 deaths, so hard.
I’m going down to London for my gamma knife tomorrow and hope next week i’ll be back on the forums posting.
Take care
and best wishes to all
Tess
Just to say I will be thinking of you Tess and hurry back to us.
Love Debsxxx
Yes thinking of you Tess.
Love Jane x
Jane
Your hospice stay sounds like my experiences on the palliative ward in our hospital. I (and others I have known) hate the ward. I have no experience of our local hospice but I hope it is not as you describe. A lady spent several days declining before she died in quite a public way - with just a curtain screening herself and her family from the rest of the world. A visiting boy who had no idea what was going on eventually had to taken from the ward once his relatives realised the situation. Then a patient - whom I didn’t really get on with very well - decided she had to minister to my distress by coming over and holding my hand. I am not a very holdy-hand person and this was the last straw for me. I discharged myself within the hour and went home. What ever wishes I have regarding dying, one thing I am sure of, is that I don’t want to end my days on Ward D9.
I do hope your stay achieved its objective of getting your pain under control.
Tess, look forward to reading that you are recovering well and back with us all.
Jennyx
I know I’m an oddball … after all I think chemo was a breeze compared to RT.
I think hospices are not for everyone. They do excellent work and they provide services and standards of care that are not always available elsewhere. I am glad that they are there but I volunteer in one and I can definitely say that I hope I don’t end my days/daze in one. I can understand why people make that choice though and it is important to actually have a choice.
The re
A really interesting thread. Thanks for starting it Jane. It sounds like they are getting somewhere with your pain relief so that’s really good news.
I, like Kay,have a dream of dying in my garden. Hope it’s not raining/winter and it doesn’t take a long time!! I too struggle with the thought of dying in my bed - would be lovely for me, but not, I fear, for my children and husband. A good hospice with a private, peaceful room would be good too - then there’s support for my family. But you probably can’t guarantee not being in a bay with others.
Hope you’re home soon Jane. Being in any hospital/hospice makes you realise how wonderful home is.
love Jacquie
Well I spent another 3 nights there and was pleased to get let out today and love being home.
Both the women who were very ill in my bay during week 1 died over the weekend and then another woman died behind curtains on Tuesaday…I was upset about that/lack of privacy.
At times the staff were superb…many had really good communciation and empathetic skills. I got a lot out of the camarderie in the bay. I left with mixed feelings…I’m going to write some feedback (about nursery talk and poor adminsitartion of drugs). I’d go in again for a specific purpose but no really don’t want to die there, and I know my hospice community nurse will support me in dying at home.
As to my pain: now on highest dose of gaberpentin…could be changed to pregabalin (spelling.) It is much better…I can now walk much further and pain less acute( though wondering if chemo kicking in on the biggest tumour). Have asked for referral about nerve block but don’t like the sound of it.
I think the whole hospice experience was mixed…some good stuff, some not so good.
Jane
Glad to hear that you are back home, Jane, and that pain is better. How’s the chemo going? Any side effects as yet? Hopefully you are tolerating it well - and it is working!!
Good luck tomorrow, Tess.
Kay xx
I look forward to reading your thoughts Jane. I’m very concerned about the lack of privacy…a curtain is not enough. I didn’t give birth behind a curtain and a roomful of others in labour and I certainly don’t want to die with only a curtain between me and my fellow patients…and perhaps their visitors. And with no privacy for any of my family too. Hope you continue to have some pain relief…xx
And Good Luck Tess…a couple of my friends had Gamma…and with very few side effects afterwards…xx
Yes Belinda…it was awful when the woman died behind the curtain. My bed was directly opposite her bed. I used to avoid being in the ward during the day but was sitting by my bed waiting for the doctor’s round. The woman had been moaning and crying during the night and i heard this continuing. Her curtains had been drawn…her husband, and apparently her daughters also there and a nurse. I then overheard wracked sobbing and lots of activity behind the curtain…I felt like I was in a goldfish bowel. In fact it was one of the daughters crying…their mum had just died…there behind the curtain.
A nurse did come and tell me and took me ouside for some fresh air. We both cried…nurse apologised and said woman had not been expected to die so suddenly.
I felt upset all day…later saw husband who must have known I had witnessed it all. I was able to say ‘sorry’ but felt so inadequate…and cross it had happened this way.
Jane
Caelyx: is this wonder chemo? Apart from feeling a bit more tired for 24 hours I have had no side effects so far…no chemo fatigue, no nausea, no aches, no hair loss…
And I think my biggest tumour feels a bit smaller…
Jane
Hi Jane
Just to say I hope that the caelyx is the wonder chemo - good to hear there’s little side effects and that the tumour feels smaller, long may it continue. Also I’m glad you’re out of the hospice, I haven’t added to this thread as I’ve been away for a few days but the views and insights that you and other ladies have are very interesting - to say the least! Definitely food for thought. Have as relaxing weekend as possible.
Nicky x
Hi
I also struggle with the decision of where to die, if indeed I get a choice. I haven’t yet been involved with a hospice so have no personal experience, but my mum passed away in hospital and still question if that was ‘right’. I appreciate there is no way my dad could have coped with her dying at home. I also wonder if I did end my days at home what long-term affect that would have on my husband and young children.
Snoogle
x
Hi
Reading Jane’s experience about the deaths on her ‘ward’ make me feel that, unless they can guarantee me a private room - which I’m sure they wouldn’t be able to do, then I’d much rather die at home after all, even if that would bring its own pain and difficulties for hubby and daughter. Can’t bear the thought of dying in public and of them having to sit there with me, their emotions in full view/ear of everyone else. Definitely wouldn’t consider dying in a hospital environment, but had hoped that a hospice would be an option. Has anyone else visited their local hospice just to check it out?
And agree absolutely with Belinda – that surely we should be granted the same privacy in death that we are when giving birth.
Alison x