He wasn’t ready

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

Dear Messymum,

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. 

Dear Messymum,

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.

Love, Mel.

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.