Thankyou for this information x
Thankyou for your wise words x
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Hi Senga66
How did you stop the cancer pain ?
Morphine not helping mine.
How are you feeling today,?
Sending love to you and everyone
X
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Hi shaw1, I think my bone damage must be nowhere near as advanced as yours; it was never really bad pain, except for on one day when I went to A and E with really bad sternum pain, which what led to my diagnosis. And my pain was never constant - it just moved around to different parts of my rib cage. I don’t know which drugs have made the difference (I’m on letrozole palbociclib and denosumab) but the pain has virtually gone as the disease has stopped progressing for now, and I don’t need pain relief anymore. My sister in law found fentanyl really helped when she was near the end with lung cancer, nothing else was half as good for her. I hope your team can provide you with some relief. Thank you to you and lulu (above) for sharing your experiences; wishing you both strength and love xx
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My pain constant in my spine.
I can’t tolerate much more.
Thanks for your reply x
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Thankyou so much for this post lulubel1
Keep your dog as long as you can and knowing your bro will take care of him must be a great comfort.
We rescued Charlie as a kitten 
. He was timid . He’d been abused. He a beautiful long haired ginger Tom. Very handsome. He three years old now. My husband is 76 so when something happens to him l worry about Charlie. I have contacted blue cross on the recommendation of one of our trusted ladies in this thread. The anxiety is overwhelming l find. I wish l could be given a date for the ’ end ’ to plan. I’ve had back pain two years. Had MRI on Fri and the tumors are big now. I’m thinking of you and sending love and healing. Wish we could meet up. I’m holding your hand. Xxxxx
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Thanks for you ur reply shaw1. I’m sorry that you haven’t had a prognosis as yet. Is this because you are still receiving some sort of treatment?
I took meds for just a few days but then stopped. At my next appointment with the consultants team they signed me off (lol) and, for the first time, gave me a prognosis. Six months. Could be four, could be eight (though I doubt that.
Regarding getting stuff in order, are you in contact with your gp and community nurses? Perhaps they could help? I had a visit from the MacMillan community nurse yesterday…she was lovely, and answered all my questions (so far). They are going to make a referral to the hospice, so that I can go to look around, and maybe take part in some alternative therapy sessions/visits, etc. they tell me that they will visit every couple of weeks, and are definately a listening ear.
I know what you mean about wanting an end time…although I have heard so many times that it is different for everyone, that sometimes I want to scream!! For me, this time before the end seems so tedious. And, dare I say it, because I have my affairs in order now, oretty boring. I’ve just realised that I’m not sure if, when you say you want a prognosis end date, it might not mean the same for you as it does for me…I just want that time to come very quickly now…hopefully without too much pain. Death doesn’t scare me as much as old age does.
Whilst I would like to keep my dog as long as I can, I know that the end might be quick, so I have to get the laborious paperwork in order for him to go to my brother in Ireland. So that had been started. To be honest, it would be more painful for me to have him around (experiencing the loss every minute, than to let him go. Especially as he would likely get to know something is wrong, and him perhaps knowing I am suffering in some way (because pets do, don’t they?), than to let him go soon. After all, soon I won’t be able to walk him…I get breathless even now, and walk so much more slowly.
In terms of getting paperwork ready for the end, over the last few years I have been doing this anyway…paid for cremation, completed Power of Attorneys, my Will, etc. I also have completed the paperwork for the Respect document including the do not resuscitate bit. Have you managed to do any of that? Do you have children who will be impacted if this is not done?
By the way, I once had a long haired ginger cat. He was so lovely.
I am now taking morphine for breathlessness (I’m not in any pain at present), and started with a low dose. But after a few days I began to feel sleepy all the time (cumulative effect) and falling asleep in the daytime, as well as increased tiredness. So for the present I have reduced the dosage and frequency. I will play around with it for a bit to find the right way forward.
I am sorry for the struggles you have, and am grateful for your supportive comments to me.
Lulu.
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Breast Cancer Now has decided to start a supported online chat for those with secondary diagnosis. Please see link below if you are interested.
Hope it helps
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Dear lulubel1
This is heartbreaking 
.
I’m so sorry.
The hospice were good l found. I was an impatient last August for two weeks pain relief. Unfortunately l couldn’t tolerate. I struggle with the morphine. Hydromorphone not too bad. The oramorph makes me sleep deep day and night and stays in my system giving me bad headache. Horrible stuff. I wish l could hug you. Please know you are not alone.
I have a DNR in place. All very final isn’t it. Try to enjoy RIGHT NOW. I’m trying not to think of the past or future only this second.
Be comfortable. Sending love 
xxxxxxxx
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Hello shaw1 Still thinking about you and so sorry about the intensity of the pain for you .
I’m managing on my slow release morphine and Oramorph at the moment, although things are getting worse so I take more and I do dread if I get to the point where nothing works and / or I can’t walk . Id just like to gradually sleep more and go that way , but meanwhile as I can’t control what’s going to happen I’m trying to just do what I can each day and with a bit of sunshine and some spring flowers that helps. .
It’s not knowing how things are going to end that is so extraordinary difficult isn’t it? God bless
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Hello Gillmary
Yes it’s all difficult…l have hip pain now nothing abnormal detected (nad) and my left knee keeps giving way. It is warm and painful…very painful so l have that now… waiting for investigation
I’m taking hydromorphone caps and oramorph which gives me a bad headache but l can’t feel pain with it.
I miss the days when l could pick up my bag and just dash out of the house. Walking round town in my own being independent doing my housework and ironing…it all a loss. Despite my being 66 . I feel 30
Charlie my cat is on my lap purring…he’s my world. Nobody loves him like l do.
Do you go to clatterbridge Liverpool? Be great to meet. I’m sending love and healing. I been thinking about a spiritual healer. My husband says it’s a crack pot idea. Grasping at straws. Look after yourself.enjoy anything you can . Xxxxxxxx
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Hello lulubel . I have just read your post and empathize with a lot of this as I am in a similar position. It is all so very hard isn’t it not knowing how long is left? I love the honesty in your post. I find myself sometimes wishing it was not long left because it’s all getting so exhausting and limiting but then getting up each day and trying to do something meaningful if only to have somebody around for coffee. I have been going to my local hospice for over a year for an exercise class, though I can no longer really do that because of pain but I do a bit of craft , have the odd hand massage and touch base with a few people I’ve got to know. I hope you find the same . They have taken over charge of my pain medication and are brilliant, though like you I am still finding it trial and error. I did similar of getting my affairs in order when I was first diagnosed with metastatic breast cancer 2 years ago although I worry it’s not all up-to-date and I might not leave it as good as it could be for family . However, I’ve run out of what it takes now to organize much more. My wish is to end my time at the hospice, but I know this will only happen if I’m not already in a safe place like hospital or a care home and they have a bed. I would feel totally at peace, knowing that I could end my time in the place I’ve come to know so well and I trust them implicitly, but I can’t plan how it’s going to be of course! . They know my wishes . My nightmare would be to be stuck in a hospital bed .
I think a bit like you I’m happy not to have to face years of old age perhaps sitting it out in a care home - I would like to reach my 77th birthday in June to see my great nieces through their GSCE and A levels without them being upset but no idea as each month I can see the decline . I can’t complain I haven’t had a decent length life though .
I hope you have a good supportive friends. I have and my church is very supportive too. I’m not afraid of death, but the process of getting there I try hard not to think about except I do and then I tend to get upset but distract myself as soon as I can .
It will be very hard for you to say goodbye to your lovely dog, but glad you have plans for him. I am quite glad now to read posts from people in this end stage after all the posts I have both posted and read over two years wondering what decisions to make about treatment and finding out people’s experiences of side effects etc . What a long old journey. I wish you well .
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Hello shaw1 . So sorry you’ve got a knee issue to contend with as well. I hope you can get help on that. I used to live on the Wirral near Liverpool, but I’m now in Kent so no I don’t go to the Clatterbridge but my local big hospital .
I can totally understand how you must feel about your lovely cat. I’m glad he’s a lap cat. Both of mine were but sadly years ago one was run over and the other died . I hope Charlie continues to give you much comfort and love .
Most days I pray for God to help you and also the other people I’m in contact with on this thread. All my best wishes.
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Hello Gillmary
It was lovely to hear from you and read your comments, which are so supportive. I am so sad that you have had such a hard time these last couple of years, and now, like me, wonder about the end. You mention that you try not to think about the end, but end up doing so anyway. I’m guessing the tears come when you think about those around you, and the loss of them, rather than tears for yourself at the end. I experienced a lot of that during the first few months after diagnosis, but it hasn’t happened for a few weeks now. I think it is called pre-grieving? Where we are imagining not only our own loss, but the loss for others, and trying to figure out what it will be like as the end draws near.
Im currently just a little intrigued about what it will all feel like (only just a little intrigued, because for most of the time my thoughts are more like “will it be bad? When will it start”? Etc. and many other thoughts relating to how the time will be between now and the point when I am near the end. Another question I have is “how long will it take” and “will I be in pain”. My gp says that sometimes people like me who only have breast cancer spread to the lungs, and nowhere else, don’t feel any pain at all. That seems weird, but hopefully it will work out like that for me, or at least that, when my body is feeling physical pain, I will already be on a high enough dose of morphine to not feel it at all. The weirdness also for me is that I don’t have pain at all (just breathlessness and sometimes a tightness in the chest, and a bit more tired than usual sometimes), yet the consultants team a month ago gave an estimate (of time left) of six months…maybe a bit more, maybe a bit less….and that when the end came, it would come very quickly. So on one level it’s extremely hard to believe it will happen at all!! This feeling of being in limbo!
Going onto some other stuff you mentioned, I too feel very well looked after. I was a bit puzzled about what you said about hospice, and that you would need to be in a care home or a hospital before you would be allowed to go to the hospice. In my area, provided there is a bed available, and also provided I am definately nearing the end of life (say one or two weeks), I am told that I can go to the hospice ‘straight from home’. However, I do know that there is a sort of waiting list which is looked at every day and consideration given to ‘urgentness’, so it may be a few days wait. I don’t mind dying in hospital at all, but I have been told that is unlikely to happen that I will go to hospital at all. I don’t want to die in my own home, for sure, and I guess that at the time I leave my home, I will hopefully not be too aware of what is going on, due to being totally full of morphine, or similar. I am aware that much of how it will be is guesswork on my part. All I know is that, when lots of ‘symptoms’ come all together, that’s when I will be nearer the end. Like you, I hope just to be able to sleep most of the time coming up to that point. Or even now, sometimes, on days and times when I am fed up with the whole palaver and tediousness of this waiting game.
I understand totally why you would want to try to get through to the time when your great nieces take their exams. It will probably be the last thing you would be able to do for them, and I’m sure it would be gratifying to know that you have achieved that. Hope it works out.
Like you and shaw1, I wish there was a way we could meet up, just to give personal support…virtual hugs just don’t seem to be enough.
The MacMillan nurse contacted me today to arrange a day to come over again in a couple of weeks. She thinks I will benefit from going to the hospice to look around, and meet others there. She is going to ask them to contact me to invite me over. I guess I will go…eventually…probably after my little dog has gone off on his permanent holiday to Ireland, when I will be a bit more lonely, I guess, and will need more focus, and something to get me out of the house. Or maybe I will continue as I am now, and spend the day listening to podcasts (currently history…Tudor and medieval and Irish).
I have just come back from a week in Cornwall with my partner. Luckily it wasn’t raining, although as you will know, last week was pretty cold, even in the south. My partner drove, and I think she enjoyed it, as normally that job is mine, as I enjoy it too. I am gradually trying to actively allow people around me to give me help…let’s say that for now I am practicing for the future. It’s hard to give up independence.
That’s it for now…I will be thinking about you, and hope you are not in too much pain and can get to sleep as much as you want. I feel a bit of a fraud at present because that is not my situation really. But I guess we are all on the same journey, and ‘my time’ will likely come along, perhaps before I am really ready for it.
Lulubel x
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Thank you for your lovely post lulubel. Your comments are very insightful. Just to say the thing about hospice and care home is that, as I live on own and if I can’t manage in my house with carers coming in right till near the end, then I will need to go into a local care/nursing home and my hospice told me that they have an order of priority for taking people into the hospice for end of life. Those living at home take top priority , those in hospital second priority, and the least level of priority is those that are already in a nursing home because they are deemed in a safe place that is able to cope with the end of life. However, I know that I will always ask and push to go to the hospice if possible and so hope it will work out that way.
So if when I am getting right towards the end ( which I think hospice consider about two weeks?) I am still in my own home then I become top priority to be taken into the hospice.
However, I have had friends who have been taken in from hospital. I know that every morning the hospice meets to discuss availability and work out priority for admission .
The difficulty for me is that because I have so many tumors in my spine and pelvis, my walking is getting worse and my oncologist says I am very likely to get immobile ( and at risk of incontinence because of nerve involvement in my spine) . This would make it difficult to remain in my own home as it isn’t entirely suitable anyway…
I’m still hoping that in some way I can be managed at home till the hospice can take me .
It is the uncertainty of how things will go that I find the most difficult and on a good day I still can’t believe I’m in this situation . I can’t sit in a car for more than half an hour or so or sustain being out for more than two or so hours - its just how it is because of where the tumors are. However, bizarrely as long as I’ve not taken too much morphine I can still drive comfortably the mile into the town .
Tday the sun is shining, I will have a very short walk with my walker, and then my lovely cleaner comes- there are blessings in every day and apart from when things come crashing in a little bit to my mind, I am really very content.
I am absolutely sure you do not need to feel a fraud as you said - anything but - you sound very sensible about everything and as if you are working your way through the very difficult issues as best as any of us can.
I listen to endless audiobooks and podcasts, usually when I’m in bed with my iPad tucked under the pillow!!! My favorites are travel programs -I can’t go away anywhere so I do it in my mind instead!
Take care Gill
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Hi Gill
I really appreciate your swift reply to clarify things. So…ever curious as I am, the thoughts that come to me are as follows….
Do you have a prognosis time given to you?
Do you have carers already…perhaps put in by social services? I know that they cost money and maybe that isn’t within your budget? My plan is (perhaps naively?) to work with the MacMillan nurse to get the social services referral when appropriate. I know that there is a time when some sort of special measures are put in when social services care is free, as you near the end.
What sort of place do you live in…a house? Stairs? Etc. for myself I live in a two bedroom social housing house. Currently I have a lodger, but we have agreed that he will be gone by the end of May, to leave the bedroom free for anyone of my children to stay for a couple of days…two of them can work from home (ie my home at times) so that is feasible. However, I don’t want my children to have care responsibilities, and as I have a few thousand ponds savings, I plan to use that for carers (I think the max is four times a day). I guess for me, if I was in your situation, incontinence pads would be the way forward…not that it would be great to be wet or soiled at night, but maybe that would work for me. I could understand if that didn’t suit you, though. Who will make the final decisions for you re these issues?
Because I am on two floors I plan (if needed) to pay privately for a stairlift system to be put into my house. Whilst I understand that social services take a mega-age to get this done, you can pay privately for this…you pay a deposit for it to be fitted and then a monthly payment. Not sure if this would be suitable for you if you are totally bed bound. Will you be given a profiling bed? I am wondering about that. If necessary, I can hire that also before social services and the hospice decide to get their finger out, but as I understand it, that process may be pretty quick.
Do you have any family other than your great nieces (who you have mentioned) who live near? Any neighbours who can help (though I am guessing that, like me, you won’t want to ask)?
Your situation re future immobility doesn’t sound good at all. It’s so sad when people have to go through the things you have already, and there is still this huge mountain to climb before the end, with all its unknowns. I’m glad to hear that, at a push, you can still drive.
Regarding meals for myself, I plan to get a supermarket delivery service with ready meals, etc. I know that carers will deal with this during one of their visits…heating it up then washing up afterwards. However, I do prefer a sandwich at lunchtimes, and sometimes the evening, and I’m guessing that that might work also. At the weekends my partner Chrissy will visit, so she can do a couple of cooked meals the…but I anticipate I will not want to eat much in the way of formal meals, really, within the next couple of months. My daughter has booked to come up to stay, working from my home, at least nice a month, and perhaps my son may do that also. He will fit in where necessary, really, depending what I need as time moves on. My other daughter has family responsibilities which include a severely disable son, so she may be more limited in her visits.
My partner, Chrissy, lives and works in Leeds, whilst I live in Manchester. She is not sure how it will work for her re her employers as the end is more apparent and she needs to be with me more often than weekends…possibly she may be given some extra leave, or possibly she may take sick leave. That’s to be worked out in the future.
I am really pleased, and reassured, weirdly, to be involved in this thread, and I hope that chatting as we have will help (and perhaps calm?) others who are in this same situation. There are not many threads on any cancer site forums which cover these issues, nearing the end. No matter how near or far that end is.
I don’t believe in any god or higher power of any kind, so I can’t say prayers for you, but I can at least reassure you that I am thinking (with an element of sadness) of you in your pain and difficulties, and also others in this situation.
Much love
Lulu. X
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I have just reread what I have written, and realise that I haven’t explained that whilst I live in Manchester, all of my children live in the south…Bristol, Wiltshire and Essex.
Lulu. X
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