My husband died on Wednesday and I feel so cheated. We weren’t ready. We thought we had longer. He was diagnosed with mets on the lungs and kidneys in August 2018, then spread to his liver and finally bones. He was very strong, he was only 44. To look at him you would never have known he was so ill. The disease was aggressive, we weren’t having a lot of success with treatments but he was on a new course, his oncologists were optimistic and they had a few other options up their sleeves. 3 weeks ago a hairline crack in his hip (caused by the tumour) caused a break in his femur. It was all pretty traumatic involving air ambulance and a LOT of ketamine to get him to hospital. He had a metanium rod fitted to support the break, xrays showed no more hairline cracks in ribs, they upped his pain meds, he had physio sessions and was doing ok on the orthopaedic ward with input from oncology and the palliative care team. he was getting on top of this set back. Then He became constipated. We had a battle with the amount of laxatives he needed to stay on top of it. Orthopaedics and oncologists seemed at odds with how to treat him with the 2 disciplines struggling to work together. A week after his admission I arrived on the ward to find him in real pain, he was literally writhing in the chair. His stomach was massively bloated. I went to find his nurse who said he had had his meds and they couldn’t do anything for an hour. I called the palliative care team who arrived and took over. They literally saved his life. They treated the pain and a scan showed that he was critically constipated, after they told me they didn’t think he would last the night. They treated him with various laxatives and again, he got on top of it. Palliative care insisted He was moved to the oncology ward. Throughout all this i had noticed he looked yellow. After his young niece mentioned it I talked to an oncologist who checked his last liver function test and yes, his liver wasn’t functioning. Not failure but he needed a stent fitted to help it. Again he got on top of it. We asked to be referred to a hospice. Everyone agreed that this was for respite, that he needed to get out of the hospital and better before we could consider a new treatment. He was moved on Monday to our wonderful local hospice. He was so happy, I was happy to leave him for the night, we texted about him being up and running the next morning, he seemed on the up. Tuesday he was sleepy but chatting and ate and moved from bed to chair. He asked me to go home to spend time with our kids. I returned to give him a goodnight kiss and we chatted as normal. Weds am I arrived at the hospice to find him not himself. He was agiated and the nurse had to give him something to settle him. It was a struggle - she had to give him lots. I called his family in and the dr said we had days and they would work to settle him so he was calm. His body literally shut down in those next few hours. It was truly distressing. He was incoherent and clearly in distress. In the end he was given something very strong to sedate him and we sat around him telling him we loved him until he left us about 2 hours later. Although it came quickly I am relieved he didn’t stay in the distressing state that he had been in. It wasn’t what he would have wanted. The dr apologised for the distress after, they weren’t expecting it either and had no plan in place. I know clearly that his poor body had suffered so much and that his body was ready but he wasn’t ready to go. He planned to write letters to his children, to record videos, to put our financial affairs in order. His will was done but he wanted to set me up financially, so I could survive until probate was settled. All our household bills were still in his name..things like that that can be sorted but I know he didn’t want that for us. He would be so upset that I am having to borrow money because his account has been frozen. We knew he was very ill as a result of the cancer and the stress his body had been put under over the past few weeks but just had no idea that the end was so near. We have had many conversations where he asked outright questions with oncology and Palliative care but no one gave us any reason to believe he would go so quickly. I just don’t understand why he went so fast. I feel like I need to talk to the oncology team. His death was actually very traumatic and I feel haunted by it. Is this normal? Sorry for the epic post. It has actually been quite therapeutic to write
I'm so sorry for your loss my wife was the same they didn't say anything just controlling the pain didn't say she was going to pass as fast as she did she was also in a lot of pain till I got hold of specialists hope this forum helps it has me a great deal
I am so very sorry for the loss of your husband. And I am glad you have found this forum.
As someone who lost her husband to an aggressive form of prostate cancer with extensive liver mets in the final year of his life, and as someone who has been reading and learning a lot about palliative and end-of-life care for many years but particularly after my husband's death, I would like to make a few comments.
I know what you mean when you say that your husband's poor body had gone through a lot of suffering and was probably ready to go but his mind was not and as a couple and family you were not. From how you explain your husband's illness and his final weeks, it sounds like the illness was progressing very fast which was possibly surprising for everyone.
You were dealing with two inter-related and yet different disciplines. The oncology team was trying to find ways to prolong your husband's life, finding new ways of treating him, and, unfortunately, not sitting down with you and telling you how serious the situation was and that your husband was sick enough to die - which means that he does not have to die but it is likely that he will. And the palliative care team was there to make your husband as comfortable as possible during all that time no matter what treatments he was on. I suppose this is where you feel that the disciplines were at odds - one fighting for your husband's survival and the other one simply wanting him to be comfortable all along and in all of it.
When I look at what you have written, the first thing that jumps out at me is about the liver mets. Liver mets are never a good sign. I would say, even though I am not medically trained, that the constipation may have been the result of both kidneys and liver not functioning properly which would have lead to a lot of toxicity in his body but also changes the protein balance and chemical balance in the digestive system.
The yellow colour as well as the sleepiness are definitely a sign of liver problems.
And the agitation is a pretty regular occurence in people who are actively dying. My husband had that too. He was trying to get out of the bed, tossing and turning, being mostly incoherent and disoriented and they had to give him a lot of medication to make him calm and free from pain.
You say you feel you need to talk to the oncology team. And I would encourage you to do so if you have any questions or concerns. It is important that you can get an understanding or at least their view of what happened. I did that too and, unfortunately, I did it very early on in the bereavement process and, looking back on it now, I can say that it was too early as I wasn't really ready to hear (I mean, actually hear) the answers. But I would still say: go ahead and talk to them.
I too was for months thinking back to the time when my husband died. I found it traumatic and couldn't stop remembering everything down to very small details. I think that is absolutely normal as your whole being is trying to come to terms with a very sad reality. Give it time.
You say that you feel that nobody was expecting your husband to go so fast. Maybe that is true. What is also possible, and it certainly was the case in our situation, is that they knew that he was sick enough to die but didn't say that outright because they could see that you were both fighting very much and that he so much did not want to go. Our oncologist said to me afterwards, "If I had said anything to you at the time, you would have been so broken-hearted at the prospect of losing your husband that looking after him would have been almost impossible for you because of the grief you would have felt." And I think he is right. I needed to be able to hold on to some hope until the last day in hospital when they told me, "Paul is seriously ill and it is very likely that he won't survive this."
It is so sad that your husband was not able to write letters to his children, to record videos, to put your financial affairs in order and to set you up financially so that you can survive the often lengthy period of probate. I too have been there as my husband had one account which was not a joint account and it took months to get the money from it even though I was the only one mentioned in his will.
The household bills in his name: You can change that in time, there is usually no rush with these things. When you are ready, make a phone call to the respe ctive companies or send them a note to inform them of your husband's passing and ask for it all to be put into your name. Usually, at least here in Ireland, people are very kind and understanding and helpful.
For now what I would say to you is: mind yourself as good as you can, try to eat and rest and talk to us here and to people around you who are a support and a comfort to you.
Love and hugs, Mel.
Mel, I can’t tell you how helpful this response is. It explains a lot and helps me to understand what his body was going through and why the end came so quickly. As someone who tried to escape from any conversations with the oncologist (the fear made me feel physically sick), I agree with what your oncologist said - I wouldn’t have been in a very good place to hear the truth. But His sisters and I feel that he would have wanted to know the truth. He was very pragmatic and would have wanted to know. I actually don’t feel I need an explanation now, just some sort of closure from the oncology dept. I pretty much feel like they just dumped him on palliative care without proper explanation - the last we knew they would be visiting him in the hospice. The team at the hospice were completely caught unaware by his very quick demise.
anyway, thank you for taking the time to respond and best wishes to you. Lx
Hello Messymum, I have read your post and thought to myself, why, we always question everything afterwards and why is a very common feeling, If only is another one, if only I had done this or done that. I found myself thinking these things after I lost my wife Jean.
It is all part of grieving. we feel guilt and wonder if only I had done this or that. Grief is a strange thing, an individual thing and often lasts for a long time. Do talk to the oncology team if you feel it will help. Talking can be a big help and we all need support at times like this. Keep in touch as well with this group, like you say it can be very therapeutic to write or talk and we in this group have all experienced the loss of a loved one. We understand your feelings and many will respond to your posts with support and advice.
God bless you and Big hugs, Terry
I am so sorry for your loss. Only a few days ago - you must be reeling. I’d like to give you a hug. Lots of what you said really resonated with me. My husband died in September after a year long struggle with oesophageal cancer. We got a bit lost between oncology and palliative care services and I found an appointment with the oncologist ( a friend drove me and came into the meeting me which was really helpful ) helped a lot. Mike was terribly agitated and confused in his last few days which was dreadful and quite traumatic, especially I think for our children to witness. But I’m choosing to try and focus on the good memories of a life together (34 years) and not dwelling on the bad bits. This forum has been a great support. I’m pleased you’ve found it and posted here. Keep coming back. Look after yourself - eat, sleep, spend time with people you love, gently exercise if you feel like it. Overall be kind to yourself. This is such a weird and disorienting time.
I read your post with tears streaming down my face. I saw some of the same with my husband. The doctors kept telling me how much time he had left; I never told him. I didn't see the point in adding to his anxiety. I don't know if I was right or wrong. A psychiatrist told me after I was right not to have told him since we need to live in hope. Maybe it was also better for your husband not to have known the end was so near. I understand he wanted to put things in order but perhaps his physical state would not have allowed him to and he would have been even more upset. I'm so sorry you both had to go through so much pain and suffering. I know exactly what it was like and I still have the images of all that almost one year later. I am so deeply sorry. These are the only words I can offer.
Try to take care of yourself as best you can. All the material and administrative aspects will eventually fall into place. We all ask 'why'. I don't know why, either.
Lots of love and hugs.
Hi Messymum, I'm so sorry about everything that you went and still going through. I lost my husband 3 months ago. He went to his GP in late May complaining about the pain in his stomach, on 29 August he died. It appeared to be a metastatic renal cancer and by the time he felt any symptoms it was already too late. The speed of his decline and deterioration as illness progressed was devastating, shocking heartbreaking and everything in between.For the last 6 weeks I never left his side, slept in the Hospital and held his hand until his last breath.We were together for 17 years.
He wasn't ready to go neither, he loved life and until the end we believed and hoped that he would be Ok. Watching the love of my life dying was the most horrible, traumatic and devastating experience of my life. We haven't had any time to get our head around his diagnosis and he was already gone. i never experienced a tragedy of this magnitude before.
Now, I also feel haunted by it, having flashbacks and nightmares. I've learnt that these intrusive memories became part of our survival instinct as our brain processes traumatic events differently than normal memories. It remembers all the intense feelings we had - fear, helplessness, horror, despair, pain. As our brain doesn't distinguish between real and false threats it is its way to remind us about the events in the past to keep us safe in the present. The hard part is how to convince our brain that the threat is in the past, we're not in any immediate danger so we don't need to be reminded of it all the time. I'm now in the process of trying to process and store these memories by allowing myself to think about it when they pop into my head even though it makes me cry and desperately sad.I don't know whether I will manage to deal with it by my own or whether I'll need a professional help in the future. So when you ask whether the way you're feeling is normal I say, yes. Everything you feel is part of your grief and trauma that you went through.
Three months and 6 bereavement/grief books later I also learnt that I need to be kind to myself, not expecting much from myself neither. I don't try to make any sense of this tragedy neither. You can't make sense of something that doesn't make any sense at all. It shouldn't happen to people like that. In fact it shouldn't happen to anyone.Your husband was young and strong, so was mine. Life is so unfair and cancer doesn't discriminate. That's is the horrible fact we're left with. There is nothing we can do about it. But what we can do is to keep their memory alive, think about what they would like us to do, what would make them proud. Their bodies might be gone but they'll be with us as long as we live. That's something that this horrible, wicked illness couldn't take away.
It will be a long and bumpy road ahead but unfortunately there is no way around it, we have to go through it and hope that one day we'll manage to be just Ok and somehow learn to live with it.
Big hug to you x
Wow, Dalia, I really loved your post and the explanation of how our brain tries to process what has happened to us. I, too, wasn't able to let go of the traumatic memories for a good few months, I was actually really getting worried at the time because I felt I shouldn't constantly think of the last night in hospital, but eventually, like you, I read a lot and explored grief and the grieving process and trauma through reading and through conversation, and I came to the conclusion that, rather than fighting those thoughts and wishing they would go away, I should invite them in and let them be thought through. And, eventually, their intensity lessened. I can still go there in my mind from now and again, and I can certainly make myself go there, but in day-to-day life they don't often come up to haunt me. You will all go through a similar process, and many on here already have doe.
Thank you Terry. The community nurse at the hospice said that it is very normal to question everything after a loved one dies. I am pretty sure that there are questions about his health that I will never know the answers to. A chat with the nurse that looked after him during his last night has confirmed that. No one saw it coming. But I guess I need to accept that he has gone, he always was going, it was just much sooner than I had hoped and now we have to find peace and grieve the wonderful time we did have together x
Sorry for your loss limbo
my husband was the pragmatic one, it was me that couldn't bear to hear the truth. He would ask the Oncologist ‘how long?’, ‘Is there a chance?’. They don’t lie, they are not allowed to lie. He knew he was very ill, he knew that he was not healthy enough to consider new treatment at that time but we knew he was in the hospice to prepare him for going home either to die or to start new treatment. It was meant to be respite after his traumatic hospital stay. It wasn’t until the last day of his life when he got agitated that the dr told us he had days. And then it was hours. They have admitted both on the day and since that it was totally unexpected and as such they were totally unprepared. I feel so guilty that he went through that. I feel awful that I was so unprepared for what death is like. And really I just don’t understand what happened. maybe I need to let it go and just accept that it has.
When we were told in July of 2017 that my husband's cancer had spread to his liver and that Chemo was the only option going forward, I think my husband understood that this meant an option to prolong his life by months and possibly not years, whereas I didn't let that truth hit me, I supported him all through the Chemo thinking that, one day, he would be able to go on to something else and be treated a different way or that the liver mets would, like a miracle, just disappear - I don't know what I was thinking really. Towards the end, I think Paul knew that he was nearing the end and, again, I was unwilling to see it, I was afraid that, once I did, I would start crying and no longer be able to be strong for him.
But I, too, felt guilt after his death - guilt for not having willing to see and admit the truth, guilty for not having spoken more with him about it,, etc.
But we have to remember that we did at the time what we felt was right, and, yes, we are of course unprepared for death and the heartache we are going to have to feel.
Your husband's decline seems to have been very fast and noone was able to know until the end what was going to happen.
When you look at it like that, all that remains to feel really is deep sadness that he, and anyone, have to go through such things and that lives have to end so early because of this terrible, terrible disease and that we, who were always there to love and protect them from harm, were not able to protect them from this.
Messymum, but even if you had known, do you think you would be prepared for death? I somehow don't think you're ever prepared for death of a loved one and the horror that comes with it. No matter how hard we try to rationalize it and comprehend beforehand, once it happens it is like tsunami, it comes suddenly, wipes away your heart and soul and changes the life forever. Maybe I'm wrong, but how could you ever be prepared for that?
I choose to be oblivious and ignorant of this horrible illness as I couldn't bare a thought of it. Even when doctors came and wanted to have a "serious conversation" we both knew what that meant but refused to know. Instead we just held hands, told each other how much we loved one another and decided to keep fighting and never give up. Naively, I convinced myself that doctors sometimes get these things wrong. As long as he was alive, there was a hope.
Don't be hard on yourself, you will accept what happened once you are ready. For days and days after my Daniel died I was in shock, disbelief and wanted for someone to wake me up and get me out of the nightmare I found myself in. You couldn't do more than you did and I hope that knowing this brings you some comfort.
We all believed in miracles that didn't happen. Up to the end, even when Gilles was in a coma, I believed he would recover. i would not have been able to survive his illness, and he neither, had I not held on to that belief. It gave us both strength, somehow . I, too, felt guily for his suffering, his dying, for not making him feel as though he could speak openly about dying. There were times when I did ask him if he wanted to speak but he would say no, there was nothing to say. I suppose he was utterly depressed and, that, I think is one of the things that I have trouble forgiving myself for, not knowing how to help him emotionally. Maybe I did without realizing it, I don't know.I'm saying all this, Messymum, to reinforce what Mel and Dalia are saying. Grief seems to encompass so many emotions, so many facets, and although they say everyone's grief is unque, there are feelings and phases that we all share. From the very beginning, the doctors told us Gilles' cancer was incurable but that did not make us any more ready for the end. As long as the person is alive, breathing, and we're holding their hand, how can we ever imagine what that loss would be like; how could we ever be prepared?
Messymum, I wish you strength and I send you my love. I did like Dalia and Mel. i read a lot of books on grief and dying and I think that helped. It allowed me to realize, if nothing else, that what I was going through was perfectly normal and was not going mad. Perhaps the books grounded me in some way.
Take good care of yourself.
You write: "i would not have been able to survive his illness, and he neither, had I not held on to that belief." I totally get that. I am not sure whether I was holding on to the belief as such or whether I was so much in what I call in my blog "the doer-mode) that I simply didn't have space in my thoughts or emotions to contemplate the inevitable. I think for me it was the latter. Just keep going, keep going, keep going; doing, doing, doing; hoping, hoping, hoping; and never, ever allow myself to think about the end.
And yet, in some way I did. Because, for example, a couple of days before Paul died, he had one of what I called "his moments" where I had said something that he didn't like and he withdrew into himself, he was sitting on the couch, marking off the TV for the following day, and refused to come up to bed, even though he was falling asleep already on the couch. And at some point I said to him, "Paul, why are you behaving in such a way towards me now? I mean, you could be dead soon and you are making such a fuss about one simple remark of mine?" So I must have known, deep down, and so did most of us I think, that the end was very near.
It was a time of so many conflicting emotions I think, of so much despair, stress, fear and many other things.
I, too, feel that I didn't support Paul emotionally as well as would have been ideal. But do you notice? I say "as well as would have been ideal" and not "as well as I could have" because the truth is that I couldn't do it any better. If I had known how to support him differently, I would have done so. And I am sure it is the same with you.
Paul mentioned his death to me a couple of times. One time he saw that house prices were going down in Dublin and he said, "That's good to know." "Why?" I asked. "Because in case you want to sell when I am gone." I didn't say anything to that. Or one time he said, while he was still trying to recover from his pneumonia, "You know, I am wondering why I am getting better actually. Because getting better, what does it mean? In my case it only means more Chemo, doesn't it?" I said, "Yes" at least to that one. But of course I immediately had to turn the conversation to something positive, I think I said something like, "Yeah, but you never know what happens. Maaybe the Chemo will really work well again." But I think the truth is that Paul knew that it wouldn't. And, looking back now, I can see that as well.
Oh there is so much more I could write about this. Today especially I am remembering a lot of our last conversations, last exchanges, etc. It wasn't an easy day.
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