Your experiences have confirmed my view too, Jane, that I really want to die at home where it is private not just for me but for my family too.
Glad to hear that the caelyx appears to be a wonder chemo - hardly any side effects and hopefully a reducing tumour.
Kay x
Interesting thread Jane, good to hear your treatment is having some beneficial effect, sounds like your time in the hospice was quite stressful at times…witnessing people dying in such a close proximity…with lack of privacy…must be the most awful experience.
My friend died in a hospice…fortunately although her room could accomodate 3 paitents…when it beame apparent end of life was near…no further paitents were brought into room…so her family had their final hours with her in total privacy…there didn’t appea to be any ‘nursery’ talk…the staff spoke to the paitents quite brightly and normally.
My aunt chose to die at home…I thought this would be lovely…all the family…with support caring for her…and it was…the support from district nurses/carers was fantastic…but we have all struggled with going into the house/ bedroom since…though I guess going into a house of a loved one you have lost…wether they died at home or not is difficult.
The situaton did become quite stressful at times…but I thik that was mainly due to the fact that my aunts husband…who’s in his 80’s didn’t really understand about Marie Curie or Macmillan and though we tried to explain to him he is quite opinionated and can be quite stubborn…and obviously he wanted the family to deal with the situation independently.
I always said I wanted to die at home…now I’m not too sure…I know our local hospice…where my friend died is very receptive to paitents and their families wishes and needs…I don’t know what I expected when I visited the hospice…but it certainly wasn’t as I expected…it was a beautiful place.
I think its good to talk openly about these things…and if my cancer returns I shall be looking to make a Livng Will so those decisions are not left to my family to make.
I think my views on hospices are well known. I had a friend who died in a hospice and it was dreadful. There did seem to be an association between being loud (crying out and such)with being naughty! In fact when his wife arrived one morning they said he had been loud and thrashing about, in much the same way as you would report the behaviour of a naughty child at school. When we went into see David the nurse told us about his bowel movements and other personal things, without asking who I was. David or any of us I’m sure would not have wanted that sort of info shared with anyone other than his wife. Shocking!
Anyway I a glad this discussion has been started because I am sure there are some really positive things about hospices and the care and staff within them. Although I do not understand why many want to join a groups in one - perhaps they offer more than I know.
I definately want to die at home, and I think my family want me to too, but I am hoping that it won’t be for some time, so I try not to think about it too much.
It’s a very personal decision for all of us, some have great relationship with great staff in great hospices, but I really do not want to explore the one in my area for reasons previously stated, although that may not be giving them a fair crack of the whip (I hope they don’t do that there!)
Oops forgot - JaneRa I have had a nerve block. I found it a bit disconcerting to find there were quite a few women (where were the men?) all lying on our sides waiting for the jab (I did wonder if this was the Doc’s only specialism?). After the jab they gave me a pain management chart to complete - which I have just found. It says that between day 1-4 after jab there was no change in pain level, on day 5,6, and 7, my back pain was worsening, there was increaseed left shoulder pain. I wa also experiencing less stability on my right foot and cramps and twisting in both legs. After those days my overall condition returned to that which I had at the very beginning pre nerve block - it must follow that others have had very positive outcomes, otherwise they wouldn’t be an popular option would they. But it didn’t work with me. Sorry
Oh Celeste your post really made me laugh. I know what you mean about naughty behaviour being punished…it doesn’t fit with hospice philosophy of how you are supposed to behave…quietly, smiling, happy, fulfilled, resolved.
Would like to hear more about nerve block. My pain is now as bad as its ever been so I’m getting desperate.
Jane x
I think initially my experience was similar to Celeste’s in that the first 3 days I noticed no difference, then for the next few days things definitely got worse and I was convinced it had not worked but after the 8th day things definitely got better as I was able to reduce meds from 80 day/night of oxycontin down to 20. Now 3 months on I am have been noticing it gradually getting worse again and am read to ask for a repeat unless I go on the cannabis trial(probably get knuckles rapped on this cos it isnt really that) so lets call it by its given name of Sativex 
That trial is 9 weeks and so long as I dont get the placebo I will stick it out probably. If I suspect it is the placebo then I will opt out and take the nerve block option.
Dawn
Having read with interest all the comments, I would just like to add my own experience and agree with Karen.
My Dad died at a grand old age of 82, peacefully, during the night whilst we presume he was asleep - perhaps the best kind of death, we like to think so. But, after 4 1/2 years I still feel kind of strange when going to his bedroom, I don’t know why because I know during life he never hurt me, nor would he.
Maybe for those who wish to die at home (perhaps me included at some point in the future) explaining and discussing the issue with our children in particular is important.
I always thought dying in the hospice would be the right decision for me, now i’m not so sure, i think i would now rather die at home if it was possible. It just goes to show that i thought hospices were more equipped to deal with the really bad pain that can come with out illness, thats what makes some of these discussions interesting and informative it lets you know what can really happen.
Reneexx
I’d like to share some recent experience : the death of a forty-something son of a friend who died at the Royal Marsden in London. The care was faultless in every way, in very sense of the various subjects highlighted in these posts by BC women : the privacy, approach, dignity, pain control and so on. Some people say that the Marsden ought to be used to death; but it is not a hospice and really quite likes to try to cure people, or at least send them on their way. End of life is not what they like to specialise in. But by god did they do well with my friend’s son and similarly another close friend who died a few months ago.
From the sensitive approach to the coming death; through the last days; and at the end. For example the two people closest stayed on; finally he died and the staff having clearly sussed the kinds of people they were dealing with, helped the new widow and the mother to sit, say goodbye, then prepare him, wash him, shroud him, and walk him down to the morgue. No rush, every assistance, every care. In all my years of hearing or reading of hospice care I have never heard of such gently appropriate care as was received at this hospital. Again, they are NOT a hospice.
Lessons to learn? If they can do it well there why not elsewhere too?
M
Very interesting thread. I’d like to share my only experience of a hospice: my beloved aunt had terminal lung cancer and spent her last few weeks in a hospice in Somerset. The staff were angels - her words and I totally agreed from what I witnessed myself. My aunt was lucky to have her own room, the ideal I think. The care she received, both physically and emotionally was just what she wanted and this was extended to the family. The atmosphere there was very calm although none of us visiting felt very calm. When she finally passed away the nurses were there to comfort my uncle (they cried together) and my aunt was treated with dignity at all times including after her death. I’ve been present at 3 deaths (3 too many) and it’s not something I like to dwell on, but since my dx it’s brought me and my mortality face to face and I don’t like it! I think there are excellent hospices and excellent hospitals, but also not so good ones. I think people should be given the choice of where they want to die, it’s just when it’s at home it’s thinking of those that are there with you, and how they cope with it.
JaneRA, I hope the treatment is of benefit to you, and that your pain is relieved. I enjoy reading your posts.
Pat x
Hi Jane
I’m a bit surprised that nerve block seems to be a bit of a revelation. My next door neighbour has been taking some kind of nerve block for well over a year for arthritis pain and this is just on a bog standard prescription form her GP.
Go rattle some cages …
D
Hi Dahlia
The nerve block we are talking about is not a GP prescription. It is a surgical intervention made by an anesthetist who injects into pain causing nerves. I don’t think this is what your next door neighbour has!
Janew
The area I live in doesn’t have a hospice ie. a building. the service offered is called Hospice at Home. The intention is to provide expert care towards the end of life within the home. At first I thought this seemed to be an ideal solution but on talking to people who have needed to use the service there are gaps when cover cannot be provided e.g at holiday times such as Christmas etc.This concerns me as I live on my own and should I need to use Hospice at Home I an concerned about gaps in care. the only other alternative is the palliative care ward in the local hospital which is definitely where I don’t want to end up having had a horrific experience with my mother. I am just wondering whether anyone has had experience of Hospice at Home in other areas and exactly how it worked.
Trish
Just to add to Janew comment to Dahlia. The nerve block I was talking about is a spinal nerve block hence the need for an anaethetist & hospital for the process.
Dawn
This is a very interesting thread and has really got me thinking. My husband works in a hospice and he has nothing but praise for the atmosphere and medical staff. He is so positive I thought maybe a hospice would be right for me.
But, yesterday morning my sister died in a hospice. I am not going to name it as I think they did their best, but she was in constent pain for much of her 3 days in there.
The doctor said she had a type of cancer that was very difficult to control pain (not BC). I saw her briefly because as I arrived the nurses went in to give her an emima. Bless her, when I saw how she had deterioated in the 2 wks I was on holiday, I was sure she was about to die, and if so, why put her through an emima, she hadn’t eaten for over a week. This enima exhausted her so much, and she needed a big dose of pain relief so we barely spoke but she did acknowledge me.
Hearing what Jane said about waiting for staff reminded me of my own time after my op when I would buzz for pain relief and if lucky, this came an hour later. This was happening with my sister too, and I think this was the main reason why her pain was never fully under control.
She was addiment that she wanted to die in the hospice. She had a room of her own, all the rooms were singles. She did not want to die at home as her husband would not cope either physically or emotionally. So she made the right decision for her. She had also visited a few times as a day patient and did some art and craft which she really enjoyed as it was her only respite from the drudgery of her daily drug regime and attending appointments.
One thing is for sure, no who is terminally ill themselves and in for respite or pain control should have to listen to fellow patients dying behind a curtain, it’s so undignified and upsetting. This would be the crux for me I’m affraid.
Though I see the value of hospices and acknowledge they are the right place for some people, some hospices need to alter their room layouts, all rooms should be singles as standard surely, maybe just using rooms with 4 in when patients are there for respite or drug control, not to die.
Best wishes to all you lovely ladies who have this decision to make in the not so distant future, my thoughts are with you.
Irene
Dear Irene
I am so sorry to read that your sister died yestrday.
Thank you for your real and utterly honest description of her last days I am sitting here crying at the awfulness of it all, What you describe is I think just the tip of the iceberg-so many people are dying in pain in hospices, hospitals, at home-this is all so wrong.
Thinking of you at this hard time.
Jane x
Hi Trish.
I live in an area where there is a Hospice at Home as part of the pallative care team operating from the local hospital as there is not a hospice as yet, they cared for my husband and I cannot praise them enough I could not have managed without them not only did they come during the morning afternoon and evening they also did night sits when I did not have a Marie Curie nurse.
As far as I know they cover all year round I had no problems covering a bank holiday but I suppose Xmas could be more difficult,
perhaps you could have a chat with your pallative care team.
I live in the Gt Yarmouth NHS area.
Best wishes
Maggie.
I always said that if my time was up then I would elect for hospice care at the end of my life. The experience my friend received when she experienced hospice care has changed my mind and it greatly concerns me by reading this forum.
I have also had a bad experience of hospice care and had cause to complain about my friend’s treatment who died of bc. I have seen my very good friend Ann who wanted to die initially in a hospice because she was afraid that her family couldn’t cope with her last days. Ann was sure that hospice care was the best she could get in the circumstances, when her final days arrived. My friend Ann who died last year went into her local hospice for pain relief. Despite various trials and errors with different drugs she was in constant pain. Ann used to ring for the nurses to help as the lady in her room was suffering even worse then her with constant pain. Ann told me that it took sometimes up to half an hour for a nurse to respond… Nurses she told me talked constantly during the night outside her room and Ann who really wasn’t a complainer had to ask them to speak more quietly as the lady who was sharing her room was close to death. When Ann was a day-patient and in terrible pain she asked to see a nurse/doctor for advice and they sent her home without seeing anyone. I was so shocked by this that I did make a formal complaint to the hospice. After her stay as an inpatient Ann was adament that her last days wouldn’t be in the hospice, as she had completely lost confidence in their ability to nurture and manage the pain. I have spoken to a hospice nurse who worked in a different hospice to where my friend went and she told me that it was very unusual to not be able to get pain under control.
I feel very scared and frighted that when I am at the last stages of my life the option of hospice care with their ‘magic box of tricks’ won’t ease my pain. It does seem that hospice care isn’t always as good as it is made out to be…and pain control is a very real issue. In the end my friend Ann died in hospital and I would say that in her situation this was exactly how she would have wanted it. Ann had absolutely no confidence in hospice care and she also didn’t want to be a burden to her family in her final days.
I do miss my friend so much and I am crying as I am typing this account of her experience. Ann was a beautiful person and she most certainly didn’t deserve the poor treatment she received by unthoughtful and undignified treatment by members of nursing staff.
I do hope that others who are at their end of life get the comfort and medication to make their pain tolerable.