He wasn’t ready

Hi Messymum,

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.

Love, Mel.

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.

Dalia x

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.

Hi Limbo,

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.

Love, Mel.

Dalia, that's exactly what I could have written: "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."

As long as Paul was alive, there was hope. And I, too, thought sometimes that the doctors may have gotten things here and there a little wrong. I also felt this because: hadn't we been so lucky in the past? So many biochemical failures of drugs we had survived and only been offered better drugs as a result! So of course there was some hope, however tiny.

But I also know that, if it hadn't been Paul, my soul mate, I would have been able to see the signs and more acurately assess the situation. When I look back now, I can see so many signs for the closeness of his death: the weakness, the exhaustion, sleeping a lot more and for longer periods, losing interest in almost everything, the disorientation in space and time, and, most of all, that he gave up fighting and hoping at one point, long before I was ready and able to do so.

Love, Mel.

Oh, Mel, that was me. I did until I was almost dropping from sheer exhaustion. I never stopped. I did and I hoped, like you. I reacted, too, in the same way if Gllles mentioned anything about his death; I just changed the topic or made a remark that things could turn around. I know intellectually that I must have helped him a little bit emotionally because one morning when he was doing poorly and he had to be hospitalised for the umpteenth time he told me most despairingly that he didn't know how I was managing to stay positive in the midst of all this. I just loved him so much.

I hope you'll have a better day tomorrow. there'll always be ups and downs from now on, won't there?

Limbo, I think that is a really interesting point. On one hand, we could think that we didn't support our partners well emotionally because we didn't allow the conversation about death and dying and we refused to see the truth for the most part. On the other hand, this may have been really helpful for our partners as well because we weren't willing to give in, to give up, to surrender to the truth; we kept going no matter what; and I suppose there was a lot of encouragement in that for them too.

Paul said to me more than once, "I really don't know how you are doing this staying positive and always having some hope, love. I really don't."

As you say, I loved him so much. I couldn't have done anything else or less.

But on the last day in hospital, after the doctors had told me that Paul was most likely not going to survive, I said to him, "Paul, I just want you to know that, if the time has come to let go, you can let go now. It is really okay to let go." And I think that was a relief for him to hear that. But I think if I had said, "Keep fighting, keep strong, we'll get through that" and all that stuff, he would have tried to hang on for me. Paul felt so bad for having to leave me so soon, for not being able to stay with me longer, for being so sick a lot of the time... It is heart-breaking to think tha, if I had said something else, despite all his pain and suffering he would have tried to hold on. I am so glad I had the sense to tell him that it was absolutely okay for me if he wanted or needed to let go.

Yes, I know, there are good days and bad days. I wouldn't even say that today was a bad day. I was just thinking of him a lot and feeling quite tearful at times.

Love, Mel.

After he died I felt angry, confused, shocked, devastated, desperate and so many other things. Then I just wrote what came to me as I had to. I think we all can relate to this. Can't apologize for swearing, sorry.

I hate you for making me cry every day,

I hate you for taking him away.

I hate you for all the pain you caused,

and all the love that is lost.

I hate you for all that you do

for those you scared and those who didn't pull through.

But most of all I hate you for making me feel weak,

you horrible thing,always know the trick.

i screamed, fought, hoped, even prayed

but you're too evil and found the way.

You found the way to break my heart,

ripped it away, killing me inside.

I'll live and hate you more each day,

for as long as I have memories of him to share.

And if one day you come for me

I'll be ready to do the same.

I'll fight, hope and hear Him say:

"Hey Cancer, f*ck you! F*uck off to your fu*ked up hell,

and take her on if you dare!"

Yep, you said it!  And you said it for all of us, Dalia.That poem was great.

What I regret, though, is that unlike Mel, up to about the third week before my husband died, I was still pestering him about fighting and being strong and reading  a book about people healing against all odds. It's a well-known book but I can't even remember the stupid name now. I was such a fool.