We were in the DayWard for a long time. Nurses came in and took bloods for different blood tests. The oncologist came to insert a bladder catheter. They put Paul on bag after bag of fluids. And they put him on antibiotics. I held Paul's hand, stroked his arm, stroked his forehead and spoke to him gently telling him that I loved him, that we were getting help now and that everything would be all right. . He seemed to be aware of his surroundings but too weak to actually engage with anyone or anything.
At some point, one of the nurses came in. She took my arm and said quietly, "I think it is time for you to call people who should know. Is there anyone you want to call?"
As I followed her down the corridor to her small office I kept thinking: So they must think we are nearing the end if they want me to call people.
"It is very serious, isn't it?" I asked.
"Yes, I think so, Melanie," the nurse replied calmly. "Paul was a real fighter. But I think this time he is very, very sick."
She left me in her office and closed the door behind her to give me privacy.
Mechanically, I first sent a message to my mum, then to my dad, then to my brother and then to our closest family friend Jacqui. When I was finished, I left her office and went back to Paul.
A short time later, one of the palliative care nurses asked me to follow her into one of the small consultation rooms off the ward. Paul's oncologist was sitting at a conference table with documents in front of him which I assumed were Paul's latest blood results. The nurse closed the door behind us and we took a seat opposite the oncologist.
"Paul is seriously ill, Melanie," the oncologist said. "It is unlikely that he will survive this."
"What is it?" I asked in despair.
"Why is he suddenly so very sick?"
"There are multiple infections in his body," the oncologist explained, "and Paul has become septic. His kidneys and his liver are failing."
"Is there anything you can do?" I asked.
"We are giving him three diferent antibiotics to see if we can get the infections under control," he replied. "We will try it for twenty-four hours. If the antibiotics haven't worked by then, we know that they are not going to work. We will take him off the antibiotics in that case and only continue with palliative care."
"I understand," I said.
"Now, would you tell me what medications Paul is currently on so that I can get the seringe driver ready for him?" the nurse asked. She went on to explain to me why some of the medications Paul was currently taking would have to be replaced by other medications because the ones that Paul was taking were not available in liquid form and some of them couldn't be broken down by the body as well as others. I don't exactly remember what she was explaining to me. I listed Paul's medications for her as I had done so often in the past.
"Is there anything else you would like to ask or discuss?" the oncologist wanted to know.
"No, thank you," I replied, "just to say that I will stay with Paul all the time through whatever happens and however long it takes."
They nodded.
I thanked both of them for the meeting and their openness and went back to Paul.
Two nurses came and got Paul ready for the transfer from the bed in the DayWard to a bed on one of the hospital wards. I followed Paul's bed down the corridor to the very same ward where he had been only a couple of weeks before when he had been fighting the flew and the pneumonia.
When we were all settled in our new room, one of the kitchen staff came in and was trying to find out what Paul wanted for his dinner that night and for breakfast the following morning. Paul was so weak he could hardly speak. But the guy went on and on asking him and reading out the options from the menu. I wanted to scream at him, "Don't you see that my husband doesn't eat anymore! Don't waste his energy with this!" But of course the poor man didn't know and so I kept my mouth shut. Paul eventually chose something from the list and a half an hour later the man returned with his dinner. Paul was of course not at all interested in food, I don't even think he noticed that the food had been placed in front of him, and, although one of the nurses encouraged me to have some of the dinner, I couldn't eat any of it either. But I asked the nurse to bring us some crackers with cheese so that Paul and I could share them. When she brought them, I fed Paul one cracker and I had the other one. Then Paul asked for a cup of tea. When it came, I asked for a straw and some more cold water to cool down the tea. Then I gave Paul his tea through the straw. That was a very intimate experience. I don't know if I have mentioned it before but I am almost completely blind so for me to give Paul something to drink meant that I had to feel where his mouth was, I had to help him to insert the straw and close his lips around it and I had to agree on a sign with him for when he had enough and I could pull it back. It worked perfectly. We were always a great team.
At one point in the early hours of the evening, I took
Paul's hand into mine and said, "Paul, you are very seriously ill. And I just want you to know that, although I love you more than anyone else in my life and I would of course love for you to be with me for ever and ever, it is really okay if you want to let go now."
I felt I needed to say it now that I knew that Paul would probably not survive this. I wanted to let him know that it really was okay to let go.
"But wouldn't I be a bad person if I let go?" he asked.
His question brought tears to my eyes. But I fought them down and said as calmly as possible, "No, Paul, of course not. You have been so brave on this very long journey. And you have been so sick in the last couple of months. Of course it is absolutely understandable if you decide to let go now."
He was quiet for a while processing this. Then he said, "Ah that's good to know that I can let go - in case the pain gets too much."
After that conversation he perked up a lot. Even back then I thought that perhaps my giving him permission to let go if this was what he wanted or needed to do gave him some strength. He even wanted to watch some TV. So we ended up watching a talkshow on the abortion referendum followed by some rugby.
You know, it was actually a relaxed evening. The door of Paul's room was wide open and we were directly opposite the nurse station so there were always people around if we needed help. I was relieved that something was done to help Paul, even though we still didn't know if it was actually helping, but at least people were involved in his care now and it was no longer just me. I felt safe and calm sitting there with him and watching TV.
At one stage in the late evening, a lady came into the room.
"Hello, Ailish!" Paul exclaimed happily.
I had never met this lady before and got a little suspicious that this was one of Paul's confused moments again and that he thought she was someone he knew when in fact she was not.
But she greeted him with equal enthusiasm.
"She used to be one of the nurses who took the bloods years ago," Paul explained to me.
Then he turned to her and explained to her, "I am here because I am quite sick at the moment. But tomorrow I will have Chemo and then I will be fine again."
To this day I ask myself: Would he have said the same thing if I hadn't been in the room? Did he really believe that he would go back on Chemotherapy?Or did he only say this to her in order to protect me? I will never know. And perhaps the truth is that Paul, who was so sick and sometimes very clear and sometimes very disoriented and who loved life but for whom the suffering had become too much to bear, wasn't sure sometimes either of what was happening to him.
I think Ailish and I had the same thought: Chemotherapy, no, he won't do that again.
Shortly before midnight, I decided to get Paul ready for sleep. In this situation, it simply meant to adjust the pillows slightly and to help him to turn on to his left side and into his normal sleep position. But as soon as he was in his sleep position and the TV was turned off, he became very unsettled. He wanted to get up and go to the bathroom all the time because he didn't remember that he had a catheter. Each time I had to catch him before he got out of bed because he wasn't actually strong enough to stand up and he also was connected to the infusion stand. Sometimes I had to call in a nurse to help me when I couldn't hold him on my own and we put him back into bed together. Paul also started to have liver cramps; at first they were irregular every 10 or 15 minutes or so but they happened more often as time went on and each time Paul screamed in Pain. He would fall into a restless sleep but then be woken up by one of those cramps, scream in pain and then fall asleep again. Paul had been given Fentanyl and Midazolam but I am not sure what the nurses were giving him as breakthrough medication throughout the night as the cramps were getting worse.
Once during the night I went out for a cigarrette and when I cqame back, Paul's breathing had changed. Each out-breath was audible, sometimes like a sigh of relief and sometimes like moaning in pain or distress. I asked the nurse what that meant. She said, "Ah that's comfort breathing. Our patients do that when they have finally taken so much medication that their pain is completely gone." Something about that explanation sounded wrong to me even back then. Later I looked "comfort breathing" up and it turns out that there is no such thing. What happens, however, and I think this was what it was in Paul's case too, is that the body, as it is getting more toxic, wants to get rid of the CO2 that is too much and in those cases the breathing becomes audible. But also this change of breathing happens in situations of organ failure. I really think that nurses and doctors shouldn't make up those stories. Of course it is distressing for a relative to hear that their loved ones body is desperately trying to get rid of toxins or that the organs are shutting down. And some people may in fact prefer being told a story like this. But I feel that honesty is best for everyone concerned. Especially though because they all knew me at the hospital and knew how much I knew about Paul's situation and about end-of-life care I feel the nurse should have been honest with me. I found Paul's breathing hard to take and couldn't stay in the room beside him all the time. Sometimes I was sitting out on the corridor chatting to the nurses or outside for a cigarrette. I felt so guilty for not sitting beside him all the time, but it just became too much sometimes.
A number of moments from that night really stand out in my memory and will always be with me I think.
- One of these moments was when one of the nurses came in to check the bladder catheter. She wanted to see if the tissue was perhaps a little inflamed around it and possibly giving Paul some pain which could have explained the constant and ever increasing agitation. I was standing a little bit away from the bed.
"Mel, can you come and hold my hand?" Paul asked me. I think he was either afraid that it might hurt or he felt embarrassed about a woman doing this. He had never asked me for my help like this before.
"Of course," I said and went over to the bed and took his hand, "look at me. Look at me. And remember how much I love you."
"Yes," he said and relaxed a little. I held his hand, stroked his hand and spoke to him until the nurse was finished.
When I think back to that now, the kind of trust he had in me brings tears to my eyes.
- The second scene I remember and will never ever forget is from some time later that night. Paul had tried once more to get out of bed and I had to call a nurse in to help me to put him back to bed.
"I don't want to stay here," Paul called out, "I want to go!"
"Where do you want to go?" the nurse asked him.
Paul was sitting on the bed trying to catch his breath after the effort that it had taken him to try and get up.
"This is not a beautiful place!" he sobbed, "I want to go to a more beautiful place!"
I had been leaning against the bathroom door feeling overwhelmed to see my poor husband in such distress. I went over to the bed, took Paul in my arms and stroked his back. "It's okay, my sweetheart," I said, "we will go to that more beautiful place. We are going to stay the night here, okay, and then we go to the more beautiful place in the morning."
I think everyone in the room at that moment - Paul, the nurse and me - knew what he was trying to say. It touches me very deeply to tell this story. I think there is something very open and innocent in that statement. I will write some more about my thoughts on this in a different blog post.
What Paul had said in a very beautiful way was that he wanted to be free from the suffering that living in this physical body had become for him.
- The third scene that I will never forget happened a little while later. Paul had yet again tried to get out of bed and one of the nurses had to come in to help me to put him back into bed. I suddenly had an idea.
"Can I take the catheter bag out of its holder for a moment?" I asked.
The nurse nodded."Yes, sure."
I took the bag out and sat down with it beside Paul on the bed.
"Look," I said, "this bag is collecting all your urine. The urine goes from here," and I pointed at where the catheter tube came out of his body, "all the way through the tube and goes into this bag." I held up the bag to him. "And this is why you don't have to, and in fact can't, go to the bathroom. So, even when it feels like you have to go, you don't have to go because it comes out of you all by itself and goes through the tube into the bag."
"Yes, okay, I understand that," Paul said. And I knew that he had, for the first time, really understood When he tried to get up the next time and I held him back, he looked at me and said, "I feel I need to get up and go to the bathroom. But it is not true. I remember that you told me that I don't have to go to the bathroom because I have the bag, right?"
"Yes, that's right," I said.
The nurses had explained to him over and over that he had a bladder catheter which made it unnecessary and indeed impossible for him to go to the bathroom but he had not been able to remember that. I had explained it to him as well, but in a different way, and he was able to remember it now. My Paul was a very experiential person, by which I mean that in order for Paul to understand something he needed to be able to experience it. So by my showing him the catheter tube and bag and explaining what the urine was doing, I had made it possible for him to understand and remember the process. This was a very meaningful experience. It has taught me that, rather than that the dying person understands what we try to explain to them, we have to find a way to explain whatever it is they need to know to them in such a way that they can understand. When you have somebody in front of you who needs to be shown things to understand them, unless you show things to them they will have a hard time understanding you. I was so glad that I was there and was able to help with the communication between the nurses and my husband; not because I am a better communicator but because I know my husband.
After I had shown Paul the catheter and how it worked, he never tried to get out of bed again.
- In the early hours of the morning, I was standing in Paul's bathroom desperately trying not to throw up. I was so exhausted and so scared and felt so alone and helpless. Outside the birds had started to sing. It was the start of a new day. I felt so sad thinking: Yes, this is the beginning of a new day. But not for us. Not for my beloved Paul. It felt unreal that life was going on around us as normal while this tragedy was happening to us.
During the morning, nurses and doctors came and went. They took blood pressure, oxigen levels and blood samples and changed the urine bag. Paul was quite agitated the whole time. He didn' want to be touched or held, the audible breaths were longer and sounded more like sobs, he didn't communicate at all.
Then the palliative care team came. They informed me that they had taken Paul off all medication except the ones that were keeping him as pain free as possible and the ones that were keeping him calm. The antibiotics had not worked. In fact, the kidneys and the liver had become even worse over night. Paul was going to die. And there was nothing more we could do but keep him as pain free as possible.
"Now I want you to lie down in the rest room for a little while," the palliative care nurse, a particularly bossy woman whom I had never liked because of her tone, said to me. "You won't be good to Paul at all when you are exhausted."
I had no strength to argue and let her lead me into the rest room. But there, as I was lying in the armchair listening to everything that was going on outside and a million miles from being calm and resting, I realised that I had to do what I felt was right not what anyone else felt was right. So I got up, stepped on to the corridor and said to the nurse who was standing there in discussion with a doctor, "Listen, there is enough time for me to rest and sleep later on. Now it is about Paul. And I need to be with him."
"But you need to rest," she began again.
"Don't tell me what I need," I interrupted her. "Bring me a cup of tea and a slice of toast. That's what I need right now. And then I need to sit with my husband."
I turned around and walked into Paul's room. She brought me tea and toast a couple of minutes later.
I think in situations like these it is important that we do what feels right for us. We know ourselves and we know our loved ones. You can't just go and lie down only because someone who is not in your situation, maybe someone who has never lost a loved one before, tells you to do so. You yourself have to know what is best. And you do.
Jacqui, our family friend, came at lunchtime. I had asked her to come in and drive me to our house so that I would be able to collect a few more clothes. Looking back, I really don't know why I wanted to do that. I mean, was it really important to bring more clothes into the hospital? But I think I wasn't thinking straight. And Jacqui felt that it was a good idea for me to get out of the hospital for at least a little while. When I look back today, I feel that I shouldn't have done it. I think I should have stayed where I was.
When we came back, the door to Paul's room was closed. It touched me very much that they treated him with such dignity: he was unconscious now and really nearing the end and so they wanted to protect him from the business of the hospital and all the noise and also from people who might pass by and look in and see him lying in bed so ill and fragile.
Jacqui and I sat down on either side of the bed. I gave Paul a hug and then sat back and simply put my hand in the middle of his chest over the heart. Jacqui gently put her hand on Paul's forehead. I have read many times that sometimes husbands or wives lie down beside the loved one who is dying. And in the early days after Paul's passing, I often felt bad for not having done that and regreted not having done it. But I know now why I didn't do it: it just wouldn't have been right because there was something about the way Paul was lying there, about this long fight that was coming to an end, just something that told me that he needed to do this in the companionship of me but on his own. I feel I would have interferred with the process if I had tried to lie down beside him and hold him.
At some point, the door opened and all the nurses from the DayWard came in to say their goodbyes. I found that so touching! They had all liked Paul very much. Paul's oncologist came in as well. He took me aside and went through the latest blood results - the ones from the morning - with me. But at one point he just dropped them and we hugged. Paul's very first oncologist from years ago came in as well to say his goodbyes. The whole hospital seemed to know that Paul was dying.
Jacqui and I were sitting with Paul for almost 4 hours. We were talking gently to him or gently sharing stories about him from happy times that we had had with him. I repeated over and over, "Paul, you were a wonderful husband. And you have fought so much and for so long. And even though I would love you to stay with me and I don't know what I am going to do without you, I am glad you can go now because life has become too painful for you. Now there are no more pills to take, no more Chemo to endure, no more injections to be experienced, no more fortisips to drink, no more appointments to keep... All that is over and there will be only peace from now on. So please let go. We are here and you are safe."
Then the gaps between the out-breath and the next in-breath became longer and longer. And then Paul didn't breathe in again. I got up and called in one of the nurses. She was with us when Paul's pulse stopped. And in that moment - in the moment that there was no blood flow in his body any longer - I got the sense of total peace, of absolute harmony, of deepest relief in the room. It was like the room that had been filled with so much suffering was all of a suddden very quiet.
We cried for about half an hour beside Paul before the nurses came and asked us to leave for a little while so that they could prepare Paul.
We went into the small waiting room - the one the palliative care nurse had asked me to go to for rest only a couple of hours before which know seemed like a lifetime away - and informed people of Paul's passing.
When we were called back into the room, they had washed Paul, taken all the lines out, and had put little flowers into his hands which were folded over his chest. A candle was burning in the corner beside his head. It was a really, really beautiful scene. I will forever be grateful for the incredible kindness and the dignity that was extended to Paul and myself all along.
Jacqui and I packed the things that I had brought in only that afternoon and the few items we had brought in with us on the day before. Then we left the room. And that was the last time I saw my husband's body.
Yesterday it was exactly 11 months since Paul passed away so peacefully and in the presence of two people he really loved at this truly wonderful hospital.
I don't know why I have been sharing our story in such detail. I am hoping that it will help some of you who are going through a similar situation or who have already gone through a similar situation. I also feel it is good for me to share my story with you. And the posts that I intent to write next will make more sense once you have read our story. I want to write about things I have learned on our journey with cancer.
