I have secondary cancer to the bone, and just recently have had more progression to the lymph. My cancer to the spine required me to have a titanium implant in my spine, the result of which is my inability to walk fast or far. I would also in be in constant pain were in not for a very high does of pain killers several times each day. I am also exhausted a great deal of the time. Anyway my point is this. I am sure that I can get more help physically and probably emotionally, but there are two words that terrify me
!. hospice 2. pallative
I know on an intellectual level that they are not just for those who are dying in the immediate future, but at some time my life will involve one or both of those words, both of which send me screaming for the hills. You can imagine, this is a bit of problem with my diagnosis, and probably prognosis. Anyone else in the same boat?
Hi Celeste, I am sad to hear the disease has progressed and after you have clearly had so much to deal with already. I understand the fear of those two words, my recent progression has raised them in my awareness also, but I am not yet sure how I feel about what is to come, it’s too soon. I do know that people have the ability to cope with so very much, as you and all the woman (and men) on here have already proven.
I can’t offer anything of value or to help other than having read about both here and in other forums, blogs etc, maybe the biggest fear is the unknown and finding out more about a local hospice and meeting the people long before you ever need them will help set your mind at rest, it’s just a thought.
For now I can only offer cyber {{{hugs}}} and I am sure ladies with more experience and knowledge will reply to you soon.
The words don’t bother me. In my area the MacMillan nurses work out of the local hopsice and my hopsice nurse is great. I went to the hospice for the first time last week…actually to see a physio about my lymohoedma…didn’t much like it there…but mainly cause I met the hospice nurse in the ‘quiet room’ which had a big wooden cross on the wall…and that was so alien to me.
As for palliative…well that’s what I see all treatment as being…I’ve never thought treatment would do anything other than releive symotoms for a while…maybe slow down spread.
Its dying I can’t get my head round…know I’m going to…and really would rather not. Oh and also hate being ill… hate the slow deterioration of the body…I’m surprised how little people with cancer seem talk about being ill and how horrible it is.
I get quite a lot of emotional support…hopsice nurse, GP, therapist, chemo nurses but at the end of the day I reckon its just a lonely place to be.
I really want to die at home not in an institution and my hopsice nurse is going to help me do that if I possibly can.
Hi Celeste,
I know how you feel I felt the same 41/2 yrs ago when told I had liver and bone secs I was introduced to the paliative care Dr and was quite abrupt and said when I needed her I would request her she gave me a look that said ‘oh and you will’ A couple of months ago I had an urgent appointment and it was her she askes if I was o.k. with it being her and I said yep I think I am getting nearer that time and her experience may be required. This made the whole appointment go well she was very thorough. We just need time to adjust, I still have not been to the hospice other than as a supporter but chemo friends who have had a tough time have enjoyed it.
Leaving this world is as tough as just coming into it we all have to do it our own way at our own pace.
Hi Celeste, it’s good to see you posting here again - albeit not so good to know of your spread to lymph. I too have bone and lymph involvement.
Jane is right, all care for secondaries I think is classed as palliative - but it doesn’t necessarily mean end of life. It just means the alleviation of symptoms and more and more palliative care nurses are being trained to treat the living, rather than the dying.
As for hospices, I had a huge fear of the hospice. I used to have to drive past it quite a lot and I imagined it was full of screaming people or people drugged up to the eyeballs. Then I was offered a course of massage treatment and it was lovely. I now go along to the hospice once a week - although I think I sometimes look a bit of a fraud because I am still physically not so bad. I really enjoy it and, of course, have found other people with a naughty sense of humour. I see my regular day as time out, when I don’t have to pretend that all is OK, and where help in whatever form is available to me. Right now, I am doing some music therapy there. I tried art, but I was really rubbish — really really rubbish. I also enjoy the massages, reflexology etc on offer and the lunch is OK too.
I think you have posted here a very important point as all of us have this shock when we find ourselves being talked about as hospice patients, I cant really tell my extended family about going to the hospice as they are so horrified by it, but then the silly part of me thinks - what did they think - did they think I was lying about secondaries? or maybe i was on a pleasure trip to the chemo suite?
Anyway I digress - I think its totally normal that you should react this way, but I think what Dierdre says is right - I dont have to pretend when I talk to the hospice nurse and i can talk honestly about how i feel with them and my symptoms etc, the visits to the doctor are so much about the chemo, not really about how i am mentally or what support my family needs, so really for me taking the step and getting into contact with the hospice actually made me feel a little better, a little more in control both about now and my eventual death from this crappy illness.
I also hate those words but agree with Jane that really chemo is palliative, it is just not seen as that way as it sounds so defeatist.
Regarding the hospice - I was referred very early on to get help for my children as they were the only people who could offer me that sort of help so I had to bite that bullet much earlier than most people. I am glad i did though as it has accessed all sorts of things for me and my family that we wouldn’t have been able to otherwise.
I have been going there for nearly a year now once a week for reflexology, reiki, aromotherapy, chiropody, manicurist and the hairdresser. It is sort of my pamper day and we do crafts in the afternoon. At first,I felt so out of place as I’m 46 and the next youngest is mid 60s but we all get on well and have a good laugh and rarely talk about our cancer and our deaths. We all support each other and it has made such a difference to my life. My hospice nurse is brilliant as again, it is for ‘me’ rather than when I go to see the onc, it ios baout the chemo or my how my body is physically. I suppose we all view things very differently and these words conjure up different things in our minds. I have no problem with the words or that I use them, it is the dying process that scares me and how little control I have over that. Developing a pressure sore recently, has really knocked me for 6 as I don’t sit down for that long really - it’s just my body is so ill now and my mind hasn’t caught up with reality.
I think my mindset is so different to others - I’m not sure if that’s because I was a nurse and health visitor so have seen so many horrible things that i just have to look at the glass being half full or else i would totally crack up so I feel so ill equipped to help you with this.
I really don’t thnk I’ve helped you at all but I understand the fear and worry of the spread and I remember all you went through with your spine op and what happened after that. You had an awful time and i really hope you can get help and support much better this time.
Rambling now
Good to see you posting as I wondered what had happened to you but very sad about your news and why you posted.
Love Kate
they told me I was having palliative care from the start when I was told about the liver mets. Really it all came in one go…breast cancer, mets in liver etc. Like you I don’t want to go in a hospice. I have to say those seem to be very different places in the UK from what they are here. Kate yours sounds just lovely, wouldn’t mind going there. Luckily it’s something I don’t have to consider as my youngest sister is adamant that nobody but her will do all the things that need to be done when my end is near. She already has arranged things at work so she can take the time off when needed. She did the same 8 yrs ago when my Mum was ill and dying of cancer of the mouth. I really do understand how you feel about it. I’m very sorry your cancer has progressed, I wish they would finally find something that makes it a chronic condition, like they did for Aids.
maroke
I couldn’t agree more about cancer eventually being a chronic condition. I am so well on chemo as it shrinks all my tumours but the minute I stop within 2 weeks symptoms are back and so the longest I’ve had off chemo since sept 06 is 3 months and usually it is only 8 weeks.
Celeste - I hope people are helping you. I don’t think I helped you at all.
Thinking of you and all on the forum
Kate
I haven’t had any dealings with the hospice but when I was first diagnosed with secondaries in my chest wall, lymph nodes, liver and lungs at in February (38 years old with a husband and 2 girls aged and 6) I was introduced to a pallitive care psycologist - she made me stay grounded and taught me that nobody know when there time is up we have just have to face our own mortality. We could be hit with a bus before the cancer gets us so she basically gave me the tools that allowed be to pull back when I started to go to that dark place and think about my kids and how they will cope when I do actually die.
It works for a lot of the time but I think we would all agree that sometimes nothing is going to make you feel better that a good old cry - which I’m sure we all do but they are not as frequent as when I was first diagnosed. Life is for the living after all.
I do agree with Jane though it can be a lonely place sometimes because you try so hard to protect the ones you love.
For myself I don’t find it lonely because of protecting anyone. I’m in a fortuntate position having a partner with whom I talk quite a lot about the impact of my dying, how she will manage afterwards, how she will make a future for herself without me. This is hard and sad for us both but it helps us both. I don’t have children nor any close blood relatives (my brother will turn up for my funeral but only because he thinks he ‘should’). I have been very open with friends and some more distant relatives about the fact that my cancer isn’t curable. Some find it very hard to alk about but some have been just brilliant…allowing me to talk and explore…tenatively and awkwardly sometimes. There is no one I need or want to protect and I want to do my bit to help people talk about dying in a less secretive and more open and realistic ways. Recently an old work colleague told me that ‘everyone’ at the workplace was asking ‘how I was’ and could she do anything. I asked her to tell ‘everyone’ to stop gossiping, and get in toiuch with me if they really did care…cause soon they wouldn’t have the chance.
No the loneliness is the fact that essentially dying is the last and perhaps only individual act. Biologically we each die alone and the final deterioration of the body is not something which can be shared.
I think part of living is preparing for dying. After all people go on endlessly about birth, planning it, anticipating it, photographing it…thinking of the best way to do it…so why not incorporate death into living too?
They have made me think that maybe in some ways this is linked to a transition I have yet to make. At the moment, I am the ‘not fully well’ person amongst a very fit friendship group. I sometimes feel on the edges and apart from them, because there are lots of activities I cannot now participate in.
On the other hand because my cancer treatment is dealt with not at my local hospital (no confidence and bad experience), but at one nearly 40 miles away. Access to their services would be too far away to benefit me. I trust my bcn and my onc implicitly, which is of paramount importance to me. I certainly see my bcn every 3 weeks when I have my herceptin, and I know she is available for me at most times on the phone. However this arrangement also means that I make no relationships with other cancer ‘sufferers’ than on websites.
This is a very garbled way of saying I am neither fish nor fowl, isolated. No longer of the living nor of the dead, but in this kind of limbo, where - however active and upbeat I am, and I am normally, I cannot get away from the fact that my life is limited. All the things that may help me cope with this, are not accessible on a practical level and because of my fear of those two words. So stuck I remain.
I think I may have rambled senselessly, I hope you will know what I mean anyway.
Hi Everyone,
I can identify with that feeling Celeste - I feel as if I have a foot in each camp, or a foot on each of two moving walkways going at different speeds. One is the everyday world of getting mad at the kids and rushing to tesco and someone having to put the rubbish out and making ends meet and getting homework done and meals on the table. The other is this world of hospitals, cancer forums and friends deteriorating, and having to do some mental preparation for my own death.
We have a day hospice locally, and I went there soon after diagnosis (March 07) to their information service, just to talk to someone and get lots of info. It was shocking walking through the door, with ‘living with cancer’ in the strapline of the title. I had a chat with the senior nurse, and had one session with a counsellor, to talk through how to talk to the children, but since then I haven’t been until last week, when I started having weekly aromatherapy massage - very nice, and this is the ideal time of year to take an hour a week out, just for me!
I do feel weird though. When I go to the hospital it’s a ‘hospital day’ and I’m far removed from my everyday life. Because the hospice is just around the corner, I whizz in there in the middle of a busy day and just before meeting my daughter from school (on the next road) so i have this weird sensation of two worlds colliding, or of being an imposter.
One time I was there I heard the nurse say to someone ‘I’m just getting a leaflet for a patient’ and was quite shocked to realise that I’m the patient! I’d been at work with my own patients only that morning, and was still in work clothes, so it felt like i was visiting staff.
I’m not sure about Diane’s psychologist’s approach. I know it can become overwhelming if you dwell on the negative possibilities all the time, but I’m not sure I could use mental techniques to ‘pull back’ from the black hole either. I feel the need to go into the darkness and have a look around and face the probabilities and make some plans - then I feel that I have even just a little control over the way things will happen. But that’s always been my way of coping with the unknown (I read every childbirth book on the planet!); information and planning = a feeling of slightly more control.
I’m sorry to hear of your recent progression Celeste, and hope you can keep well for a good long time
love Jacquie
I guess you will use the words when you feel ready to. Hospice services should be available to you locally, irrespective of where you are rceiving tretament. I use mine because I find my hospice nurse helpful…I don’t meet other cancer patients face to face…I am always wary of that because I have never thought I necessarily have anything in common with other people with cancer just because I have cancer…thats why I like on-line forums…more people to choose from about who you get freindly with.
I have met in person several fabulous women through the forums and at various events and I find those kind of meet ups really worth doing. A group meet in Central London (started as liverbirds group but now extended) and hope to meet in January. Maybe you could join us?
Once given the diagnoses of cancer I think we draw up a mental list of words we find difficult to come to terms with. In my case … hospice… I know it is silly as I have visited several and raised money for a couple.
Today I am going to introduce myself to our local hospice, which I know is a very nice place full of very caring people. So why is my heart pounding. Silly isnt it?
My wound has burst open yet again so in my right breast is what looks like an eye peeping at me. Rang hospital and they said no Dr’s on ward so give hospice a ring and they will sort it. Everyoe in Cornwall is just so laid back!