I thought I’d start a separate thread…have posted here rather than in End of Life because I think its so important that we see hospices as part of support during the whole period of our time with mets.
I’ve just stayed 4 nights in Countess Mountabatten Hospice near Southampton. There were times when I felt I was staying in Fawlty Towers for the dying…times when the kindness of underpaid care nurses tripped over into sad, funny baby nursery talk. We were all poppet ands lovey, and sweetheart…A ‘friend’ I made and I looked aghast as from behind curtains we heard someone say: ‘now lift those little leggies poppet’…I overheard beautiful words too.
Its a 25 bed hospice with just 5 single rooms and 20 others beds in bays of 4…I was in one of these with 2 very ill women and one other about the same as me…in for ‘pain management’. I found it hard at times being with very ill women who groaned and shouted a lot at night…and their groans were soothed by good night staff. Incidentally I kind of ended up feeling that we with breast cancer, and with breast cancer mets maybe don’t appreciate the time we can often get after diagnosis. The two very sick women had both been diagnosed only 4/5 weeks and 6 weeks ago respectively.(and I mean primary diagnosis with secondaries.) They were both, in lucid moments (both had brain spread) trying to get used to the imimnence of their likely deaths. Not much time for memory boxes. I found the bleak solidarity sametimes uplifting but if very ill I would certainly have wanted a single room, and I have left knowing that I will do anything at all cost to die at home (which is what my partner wants and I am confident that with support she can do it.)
As to my pain management. There was loads of sitting around, and waiting, waiting for the doctor’s round, waiting for the volunteer run on free booze, waiting for drugs, just waiting. All they did was raise my gabapentin to 900 mg 3 times a day…and take my obs lots of times…pain is marginally better…I can walk a bit further before seizing up and the pain is not so intence. TENS machine not worked this far!!
I feel like I have verbal diarrhea (sp) So many thoughts and feelings about the experience. Will probably add to this post…oh I am back on Monday morning.
Jane
Surreal Jane…so we enter and depart this world to baby talk.
Is it another hospice stay on Monday or a visit? I too would want a single room…the thought of dying amongst fellow patients and their families…it’s just too awful. I’m sorry to hear the pain is only ‘marginally’ better. Belinda…x
Hi Jane,
I have been trying to reply to this thread all evening and I keep loosing it.
I am now typing in a word doc so I can paste and copy!!!
It was good to read your post I have been thinking of you…chemo treatment and also the pain management plus my copycat tendencies……(at least its not stalking)!
You are so right to post about it not just end of life, I always think that its something we don’t talk about just like cancer was 20 years ago.
I have recently spent a lot of time visiting at my local hospice the staff do a great job but I know what you mean by the baby talk……
Did you really get booze?
Thorpe Hall which is my local one doesn’t have any single rooms either and I remember visiting PinkDove and just wanting to sit quietly holding her hand and the lady in the bed next to her had the telly up so loud.
I am pleased that there was some help in the pain management. Why are you back on Mon? Were you let out for good behaviour?
Do you think that you rested anymore being there and would that have made a difference?
I know myself even when I have help I ‘just’ do something else before I sit down.
Although it’s not a pleasant subject, good that you have talked to your partner about being at home. It is so hard for our loved ones they must feel so helpless at times I know I have done with my friends that I have cared about very much.
Look forward to reading more of your posts,
Wishing you a good weekend in whatever shape that takes for you.
Best wishes
Tess.XXX
Hi Tess and Belinda
Yes I really got booze and it could have been wine (good quality) or sherry or baileys or g and t…or anything. A doctor told me first day in that a little booze was good for me. Could have had it at lunch time too but I didn’t. And it really was free, as was my daily newspaper.
And the smokers with lung cancer really did get wheeled out in their dying beds to have a fag.
I didn’t feel particularly rested…I did feel insitutuionalised in a weird way. I don’t quite know why I needed to be in there, except they say that they can increase/decrease drug doses quicker if they are ‘monitoring’ me. I’m willing to do it to try to get pain under control, cause I haven’t been able to do much what with not walking far.
Let out I guess cause no doctors at weekends…as I said weird so many things.
Jane
Hi Jane
Having just looked at your post, and I hope you don’t mind me reading and posting, but just wanted to say that I hope the hospice can find you some good pain relief so that you can get around and start walking again as it will improve your quality of life.
It’s a shame in this day and age that effective pain relief has not been found for some patients, no one should have to be in pain.
Enjoy the free booze
P
Hi Jane
hope you remember me, we met at Kates funeral and I have wondered how you are fairing and wanted to say hello.
2 years ago I had 2 friends very poorly, one in an onc ward bay the other in the local hospice.
The hospice did offer a lot more privacy as my frind at 38 was offered a private room with terrace in the garden. When I went to visit her, her bed had been wheeled into the sun and I refilled her baileys and helped her light a cigarette, she also had the offer of massage etc. My friend on the onc ward had just the regimental hospital standard procedure and slept right thru my visit.
Visiting both was very sad the same at Kate, really agree with your plans if possible to use hospice for pain management and if you have the wishes and means to be at home then go for it.
Take care
Debbie X
Hi Jane
Its a good post - thanks
Fawlty towers - hope you didn’t order wardolf salad - it sounds like quite an experience - and overall a bit grim - i think i would find it hard not being in my own room - i have yet to visit the hospice near me although it has been suggested - but at least you are clear about where you want to be - sorry that you are still in pain , i hope they come up with someting better for you - jaynex
Hi everyone,
I too am enjoying this post.
Not because you are in pain Jane or because you have spent time in the hospice. I hope on your return they get the pain more under control.
I think our hospices, St Austell and Hayle are pretty good according to reports from fellow patients. This conversation came up yesterday in chemo I had asked had anyone stayed there as it had been mentioned a stay may benefit my condition. One woman went in for New Year as she was having a terrible time with mouth ulcers she said her and her daughter had a lovely new year food and booze very good staff lovely they couldn’t do enough for them. Beautiful garedn with plenty of wild life and water features.When she got home her husband said ‘you are not in a 5 star hotel now!’ so it back to normality with a bump.
Love Debsxxx
Hi all
Can I join in? (I too tried posting a reply to someone - different thread - yesterday and kept losing it … very annoying … so in the end I gave up.)
I’ve been wondering about the dying at home versus dying in a hospice debate. In many ways I would much prefer to die at home. Jane, your stay in hospice sounds so farcical and I wouldn’t want that to be my last experience! I’d prefer to be in my own bed, looking out of my window at the view that I love so much. We’re in the middle of a city and I look across at a small park and a nice library building, there’s a bus stop just down the street and always lots going on. It makes me feel like I’m in the middle of things, which I like.
But I don’t know if me dying at home is best for my husband and little girl. Would it create horrible memories for them? Make them not want to go in the room again? Would it simply be better for my final weeks/days to be managed away from home so that they are unaware of the worst aspects of it. I just don’t know. I’d be interested to know what others think about their own preferred place of dying.
Alison x
Hi everybody. jane i hope the hospice manages to get your pain better controlled soon, and the staff stop patronising the patients soon ( wouldn’t have put up with it when I was hospice sister). I have thought a lot about where i want to die, and would prefer the hospice as don’t want my husband and son to have to live in the house where I die, but know there may not be beds available. It’s worth remembering that most hospices depend on charitable donations to make up at least half their income-the nurse/ patienr ratio is usually much higher than in general hospital wards, but this is expensive. Also, although doctors may not be on site at the weekend or night, they are on call.
best wishes,
Nicky
Hi Alison,
In the ‘End if Life’ section I told my story re husband dying at home.
It is under ‘Death and Children’ it may help, it may not.
I also want to die at home, well no I don’t want to, if you know what I mean.
Love Debsxxx
My choice would always also be to die at home. In fact I have a (probably very very unrealistic) desire to die at home on my reclining chair in the garden. If it’s the winter, it’s to be in the conservatory (that we haven’t even got yet though have planned one for some time!). Can’t bear the thought of dying in a “public” place such as a hospital ward or even hospice, particularly if it wasn’t a single room. For me it is about being in what I perceive as the safest, securist environment surrounded by people who love me, and who also feel comfortable in that environment.
Like you though, Alison and Nicky, have wondered how that would be for the family afterwards. My children are all in their 20s and I haven’t discussed the idea with them but I have with my husband. He feels it will actually help him and the only thing that concerns him is getting enough help (of all sorts) in. Quite rightly he’s concerned about the responsibility really of looking after me if I am in considerable pain and there isn’t enough regular support coming in.
Kay xx
I’ve been in my local Marie Curie hospice twice now(4 weeks and 1 week)
It really is like a five star hotel! It certainly isn’t grim!
As Jane said,they bring drinks round at lunchtime,newspapers(not free),chef asks what you would like for meals,reflexology,foot/leg massage,hairdressers(£6),lovely staff and I had my own room with a lovely terrace.I didn’t come across any baby talk though.
I was glad I was in there because they tried Methadone on me,which didn’t work and if I’d been at home I don’t know what I would have done-agony!They do like to monitor you so they can change meds quickly and easily without you being in too much pain.
Sorry you are in pain Jane-it’s just c–p isn’t it!?
Alli x
Hi Jane
Sorry to hear that you still have pain , it must be so debilitating, I hope thyat they can get on top of it. I visited a friend earlier this week in our local hospice and it seemed that they were mainly single rooms , the staff seemed very pleasant, no evidence of booze but it was mid afternoon! We sat out in the garden and the atmosphere felt relaxed which is good for her and her family as she has a little girl.
love kathryn
Hi Jane
My brother died in Countess Mountbatten Hospice just over two years ago. He was there for six weeks or so and was in a side room all of the time - he had brain mets and was quite difficult to manage at times. The staff I met seemed very good - they were very patient with my brother who could be challenging at times to say the least! I think things would have been much harder for us all if he had been in a ward with other patients. I would have thought that all hospice accommodation should be in single rooms but I guess a lot of them - including Countess Mountbatten - were built quite a few years ago when it wasn’t seen as so important.
I hope that they can get your pain under control when you go back on Monday - I can’t imagine anything worse than constant pain. Hope as well there’s not too much of the lovies and poppets when you go back this time - perhaps its the way some of the staff cope with the situation they work in, but really not acceptable. Enjoy the free booze at least
best wishes
Anne
Countress Mountbatten is a low rise fairly new build…set in lovely gardens…so defintely planned with the 4 bedded rooms within last 10/15 years or less (I think I saw a plaque about 1999) Would imagine its some kind of financial rationale.
Another v. important issue which came up was when I was asked at admission interview if in the event of a crisis I wanted to be resuscitated or not. My records showed that I have already asked a lot about this as I decide what to put in my advance directive/living will. I found that though at some time in the future I imagine DNR (do not resuscitate) to be the sensible approach I don’t consider it right now! But if I collapse there’s no guarantee I can be resuscitated succcesfully. I just couldn’t decide what to say and the nice young doctor said he’d ask again next day but never did. So I guess for now it says do resuscitate. Has anyone
else faced this dilemma?
I am by the way at risk of stroke because of tumours wrapping around my jugular vein…my partner said the other day that maybe I don’t realise how ill I am (this was when I said how hard it was being in bays with ill dying people). I guess I don’t know how ill I am. Maybe none of us does. After all I ‘only’ have a ‘regional recurrence!’
Jane
Jane
What an interesting thread. Jane you should have been a journalist not a teacher.
Alli my mum died in Marie Curie and I have nothing but praise for the staff and I want to die in there. My mother used to make me laugh, poor soul had never had much in her hard life and she felt she had arrived in a 5*hotel only darn sad thing was she couldnt swallow to eat any of the lovely food. I found the staff very respectful. Would detest being called sweetie etc etc. Mind u wouldnt mind the wine, maybe a few bottles would be my pain relief.
I would absolutely HATE to die in the General hospital and be to scared to die at home.
My mum was only suppose to be in Marie Curie for them to sort out her breathing probs as her lung had collapsed due to BC secondaries which started with neck secondaries. You are right Jane no one knows how quickly the end can come. Mum took really ill on the Monday and died on the Wednesday.
I honestly do not know how you all cope with so much pain. I have been in agony all week with pain (onc and scans I fear)
Had some very odd thoughts this week reading about the couple who had an assisted suicide, those who know my religious stance know I couldnt do it but I must say I thought it was lovely for that couple to die together.
Oh do they have the internet in the hospice???
Thinking of you Jane
Rx
The whole rescitation issue is a very difficult one and something that a lot of people feel uncomfortable about discussing. I feel hesitant to discuss it here as I know that some posters on the forums are upset by posts they see as negative but I feel that this is an important issue, so perhaps if you are easily upset it might be best not to read any further.I think that the general public have been seduced by TV shows such as ER and Chicago Hope in to believing that CPR is successful in nearly all cases and all circumstances. In reality - from the various articles and pieces of research I have seen - the success rates vary from 2% to 20%, depending on the age and underlying health problems of the patient. In older patients and those with multiple medical problems or advanced cancers CPR is said to be clinically futile and has virtually no chance of success.Even in those who survive an arrest a number of them will be left with significant disability.
I think that medical professionals should discuss these issues openly and honestly with patients but I also know from experience that this can be very difficult. Not all doctors and nurses have the necessary communication skills and not all patients are willing or able to talk about it. For myself I would not want to be resuscitated if there was very little chance of success. However that does not mean that I would not opt for all other active treatment that could make me more comfortable and extend my life. I think that some people feel that if they say they do not want resuscitation it means that they will not get any further treatment but this is not the case. Hope your pain is not too bad today Jane and that your stay in the hospice for the next few days is as pleasant as it can be
best wishes
Anne