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After having lost the love of my life to cancer in spring of 2018, I want to share some reflections on what I have learned in the role as his carer, and on my grieving process. I hope this blog will be of help to some.
Paul had to go for a further set of scans in early February of 2017. By that time he had been off Chemotherapy for almost five weeks and we were both concerned that the cancer might start to grow again if we didn't continue Chemotherapy soon. One week after the scans we had the appointment with the oncologist.
"The scans are the same as the last scans from November," he informed us.
We were silent. We both felt disappointed because we had so much hoped that the Chemotherapy would be able to shrink the liver mets.
"This is really good news," the oncologist continued, "really, really good news."
At the time I remember thinking: What is good about it? It is not what we were hoping for and after so much Chemotherapy we really feel that something more should have happened! But, looking back today, I can see why he said it. He said it because he had never believed in the first place that Chemotherapy would work, so for him the fact that the therapy had done that so far was a good and much more positive result than he had anticipated. If I had understood this back then, I think I would have been much more worried about what was to come.
"I'll prescribe four more Carbo Platin infusions," the oncologist said.
Four more! I thought. That's not much, is it? Today I can see that he only prescribed four because he didn't think that Paul would be able for much more. And, as it turned out, he wouldn't even be able to complete those four treatments.
Anyway, we left the doctor's office on that day feeling that, while the results weren't as good as we had hoped, at least Paul was stable.
Paul started back on Chemotherapy one week later. When we got his bloods done in the following week, we were all surprised to see that his liver markers which had been going up ever so slightly during the Chemo break were down again.
"So that means that one Chemotherapy infusion has done this time what we needed six infusions for before?" I asked hopefully.
The oncologist agreed hesitantly.
Today I know that only because the liver markers were better it didn't mean that the liver and in fact the rest of Paul's body were better. But at the time I just wanted to have hope no matter from where it came. And I certainly wanted to absorb the news and not think about them too much.
Paul felt okay after the Chemotherapy infusion and for the following three weeks. We began to carefully think about plans for the year. Maybe we wouldn't be able to go away for a long period of time and certainly we wouldn't leave the country, but perhaps we could go to the West again...
The next Chemotherapy infusion went well also. No major side-effects and yet again the liver markers were more in the normal range than before. We were delighted.
In the first week after Pauls second infusion in this cycle my parents came over from Germany for a week. I didn't feel too good about their visit as I feared it could be too much for Paul. Because, even though he knew that he could always go for a nap or go to bed earlier, and even though I knew he would do that, I also knew that Paul would feel tension inside simply due to the fact that somebody else was in the house, that we had guests. And I think that is something that is true for many people. Despite my worry I was really looking forward to the visit and felt relieved that they were coming to us to see Paul because I felt that we wouldn't be able to go over to see them and then my parents and Paul would never see each other again.
We had a good week. We went to the coast, ate fish and chips, went into the Wicklow Mountains, I went into Dublin with my parents, and we spent the evenings at home and had a good time together.
I will always remember the morning of their departure. Their flight was really early and we brought them to the airport in our car. When we said goodbye to them in front of the the security gate, Paul said goodbye in a kind of a rushed way and it felt as if he knew it was their last goodbye... We then went home and decided to go back to bed again because it was only 7 o'clock. When Paul came into bed beside me, he was shivering and holding on to me. Looking back now, I think that this was the beginning of the breakdown that would follow. I sometimes think that Paul held on for my parents, he wanted to be here for the visit, but either the visit was too much for him or else he felt ready to go after that - but that was when the very rapid decline began.
Two days later, Paul woke up with a sore throat. We knew that we should go into hospital straight away. But it was Easter Saturday and our normal hospital has no emergency department open on weekends. We then thought stupidly that perhaps we should just wait a little and the sore throat would go away again. This is something so utterly stupid to do when someone is on Chemo because the risk of infection for people on Chemotherapy is so high; Every little cold can turn into pneumonia and become life-threatening. It was not that we didn't know that; but we wanted to wait until we would be able to go into our usual hospital and see our usual doctors. As I said, a stupid decision.
Paul got worse over the weekend. On Easter Monday night, he even had a temperature. We were now relieved to know that the next day we would go into hospital. But I felt also very worried because I knew that if Paul was really sick they would postpone the Chemo. That was the first time I asked myself, "How much time have we got left?"
On Tuesday morning, it was so difficult to get Paul out of bed. I dressed him, gave him a little breakfast that he didn't want, packed a little hospital bag for us and called a taxi for us to go into hospital. You may wonder why I never called an ambulance and always a taxi. The reason is that when you call an ambulance here in the Republic of Ireland, they bring you to the hospital that is on call or the nearest hospital. But we wanted to go into our cancer hospital. That wouldn't have worked with the ambulance. When we arrived in hospital, the nurses and doctors took immediately care of him. They gave him a bed, put him on fluids and got a doctor to take a large amount of blood and look at him. With the help of the fluids and some IV Paracetamol Paul became clearer again and his temperature dropped. By the end of a very long day on the DayWard, we got the news that Paul had tested positive for Influenza A and that they believed that he had pneumonia as well. He was admitted and isolated in a single room because of the flew. He was put on antiviral medication because of the flew and on antibiotics.
We didn't know how to feel: heart-broken in one way but also relieved to be in hospital where everybody seemed to have everything under control.
What I noticed and what made me worried was that Paul was kind of confused as well. He couldn't give the nurse the list of medications that he was on, so I did it for him, and I think this was right anyway because I was giving him the medication and knew exactly what he was taking. But he also spoke about things I couldn't really make sense of and sometimes his voice was very low or his speech was unclear. I mentioned it to the doctor when I left. They promised me to get a brain CT the next day.
I was in early the next day. Paul was still slightly confused and disoriented and the speech hadn't improved either. However, the CT scan of the brain had come back clear.
Looking back today, I do think that this was all part of a major breakdown. Paul had been fighting for so long; he just didn't have any more strength. And it is interesting when you look at patients sometimes that way: The moment they get into hospital, they just let go - of their fear, of their worries, of the need to hold on and the need to be strong and give themselves completely into the hands on those who now care for them; and I think this is at those points simply because they have no more strength left in them to fight.
For the next couple of days, my routine was always the same: geting up early, going into hospital, staying with Paul for 6 or 7 hours, trying to speak to doctors and nurses as much as possible, and then going home to an empty house, get sometimes something to eat and sometimes just fall into bed with exhaustion where I was unable to sleep because of all my worries unless I took a sleeping tablet.
Paul continued to be confused and he seemed to forget things like, for example, how his IPad worked to read the newspaper or how he could listen to podcasts. He wasn't really interested in conversation with me either. It was as if only part of him was with me.
One day I came in to find Paul in tears. He said to me that he had been so hungry the previous night but that nobody had given him a tea and a slice of bread. "Did you ask for it?" I asked. And he said, "No, I didn't want to bother them." So I went out to the nurses and told them that, although my husband didn't say anything to them, they were to bring him a cup of tea and a little something to eat every night from now on.
I was so glad that I was there to sort out those little things. I don't know how people do it when they are in hospital and have nobody who can take care of those things for them.
Whenever I mentioned Paul's confusion to the doctors, they said that it was probably because of the flew and because of the pneumonia and because of all the medication Paul was given. Something in me said: No, that's not true. But the bigger part of me also wanted to believe that.
After one week in hospital and isolation, I was able to take Paul home with me. He was still extremely weak but stable enough to go home. I still remember how we arrived at our front door and how happy he was to be back home with me. We spent the whole evening and the next two days in together being inseparable. Even when Paul went for a nap I came with him and lay down beside him.
On the second day, Paul began to complain about pain in his left lung. This time, we immediately went into hospital where they scanned the lung and found that it had not improved and also his CRP level - CRP is the infection marker or one of the infection markers in the blood - was elevated at 311. The oncologist said we should go straight to the university hospital. When I asked if Paul could be admitted in our hospital again, he said that this time he would be better off in the other hospital.
What I find really interesting here is this: When Paul was discharged the first time, they told us that it was fine for him to go home, so I assume the bloods must have been good enough for him to go; they did not examine the lung on that day. Would they have kept him in, if they had seen it? I don't think so, because the real result of a treatment of pneumonia with antibiotics can only be seen a couple of weks after completion of the treatment. However, when we presented two days later with pain in the lung, they examined the lung, and seeing the still infected lung and the high CRP together, they felt he needed to be admitted again. So I can't help but ask myself: Should they have done more on the day of discharge?
I know I should have insisted on the day of discharge that they take bloods again, including CRP, and that they have a look at the lung. Why I didn't do that I will never know.
Anyhow, we went to the university hospital where we had to sit around in A and E for 10 hours before Paul was given a bed. I think that was particularly disgraceful as Paul's immune system was already compromised. They shouldn't keep Chemotherapy patients who present to the hospital through A and E in the same room as everybody else. Paul was again diagnosed with the flew and with pneumonia. So both had not gone away through the first week of treatment with antibiotics. He was again in an isolation room.
Paul was in the university hospital for 10 days. Every day I came in early, tried to see doctors and nurses, spent as much time as possible with Paul and helped him to find things on his IPad, take a shower, brush his teeth and whatever else it was that he wanted to do in the room but could no longer do on his own. Paul was very unwell. He was very weak. He was on oxigen most of the time. He had no appetite and every day I had to almost argue with him about food. He was also not really with me emotionally most of the time. Those of you who have been with their loved one in the dying process will perhaps understand. Paul was there but drifted off, couldn't concentrate on anything, and didn't have an interest in anything - not even in his Irish Times. When I would come home late in the evening, I would call him on Messenger and show him around our house in the video chat because I was afraid that he was too isolated in hospital. I didn't wear the masks that one has to wear in these isolation rooms; not because I am not careful but because I wanted my husband to see at least me in a normal way, dignified, and not through a mask. Only once or twice did the hospital staff object. But I told them firmly that I would not do it any other way and that was that.
In those days, Paul and I were not close. Partly because he was too weak to engage with me like he used to. And partly because I was too stressed to be relaxed with him like I used to. My thoughts circled around diagnosis, prognosis, blood test results, lung infections, medication and what we would do and how we would cope when he came home...
One of the days, the oncologist came in. He was very quiet and just looked at the chart for a long time.
"When will we be able to continue Chemo?" Paul asked him.
"Well, first of all, you have to overcome these infections, don't you?" The oncologist's tone was somewhat dismissive, as if he felt that this had been a really stupid question.
"We don't have much time," I said, "that is the problem. If we don't continue soon, the cancer will grow again."
"Yes," he said, "that is exactly the problem that you have at some poing with cancer patients. They are too weak to have Chemo but they need Chemo to keep the cancer under control. And then they either get well enough quickly enough so that they can take Chemo again or..."
We didn't want him to continue. The "or" was not an option for us. We didn't want to even think that way.
I took Paul home with me on 23 April after he had been off the oxigen for a day and after he had successfully completed a stair assessment with the physiotherapist. This time, Paul's and my enthusiasm when we got home was different to the first time. We were more cautious and felt that any time at any moment anything could happen.
The next two and a half weeks, all I was focused on was to get Paul well and strong again. I cooked Paul nutricious meals (of which he didn't eat much but at least a little). I made sure that he got enough rest and naps during the day. I made sure that we got out of the house for a little walk (not longer than 10 minutes) every day. And, throughout it all, I remained positive (at least with Paul and regardless of how I felt inside). I did not want to show him anything but a cheerful me that of course believed that we would manage, that his infections would clear and that he would start Chemo again and that it would be very successful.
Every couple of days we went to the hospital to talk to our oncologist about the progress and to see how the liver was doing. It seemed to be doing okay but, unfortunately, he still didn't feel much better and his lungs still seemed to be infected. So during each of the hospital appointments, we all decided that we would wait a little longer with Chemo.
On 8 May, a Tuesday, we went into the hospital again. When we got Paul's bloods taken, I said to the nurse, "Can you take the CRP please?" She said, "It is not on the form. Your oncologist didn't ask for it." "I know," I said, "but I would like you to take it. I'll explain it to him." "Was there an infection recently?" she asked, "because otherwise we don't take it." "Yes," I said, "flew and pneumonia. So can you please just do what I have asked you to do?" She did take the CRP together with the other markers. I know today that a high CRP at this point was not only a sign for whether or not Paul's lungs were still infected but could also have meant at that time that his cancer was growing or that the liver was inflamed or that his kidneys were inflamed. But I wanted them to take it so that we would be able to see the state of his infection and inflamation marker at least. It turned out to be 90, which is still way way too high and much higher than it had been when Paul had left the hospital two weeks earlier. They actually thanked me for having asked for the CRP. Another thing that had begun to bother us was that Paul's feet were swollen. He had never had that before. I was worried about his heart and his kidneys and I said so to the oncologist. "Paul's Albumin level is low," he said, "and when it is low it can lead to swollen limbs." I had never heard of Albumin before but of course made a mental note that I would look it up and read all about it later. The oncologist said that we should do another examination of the lung and, if all was healing, go ahead with Chemotherapy on Thursday of the same week. We were delighted to hear that, all going well, we would be able to go ahead. Especially I was glad later that evening when I read up on Albumin and found out that it is a protein produced by the liver and that when there is an Albumin deficiency in the body it is a sign for a malfunctioning liver, liver cancer and, in the worst case, that the blood plasma is falling apart. It said that people who are near death often have low Albumin levels.
The following day, I rang the oncologist. I don't know if he would have rung me. Paul certainly didn't want to ring him. He said, "We will hear the results of the lung exam soon enough." But I couldn't wait; I knew that too much depended on what the result of that lung examiniation had revealed.
"Unfortunately, the lung looks much the same as the last time we looked at it," the oncologist told me. "This and the fact that the CRP is still very high makes me think that we cannot go ahead with Chemo tomorrow."
"Do you think we can do it next week?" I asked.
"Perhaps... Come in on Monday for it anyway," he said. "Tell Paul not to be too disappointed. I think we will be able to do it next week."
I often wonder if he knew at this stage that Paul would never again do Chemotherapy or did he really still believe that Paul's lung could improve so much that Chemotherapy would be an option again? I find that hard to imagine.
"What about the Albumin?" I asked.
"Oh you will probably never see that change again," was his reply. And today I know that he was right. I could never have seen it change again because the low Albumin level was a sign of an ever-decreasing liver function. And Paul's liver couldn't get better unless he was doing Chemotherapy. But his body had become too weak to do Chemotherapy.
When he came home and I told him that we wouldn't be able to do Chemo the following day, he was annoyed and also annoyed with me for having decided this "behind his back". But the truth is that Paul wouldn't have been able to make the decision with the oncologist. At that point, Paul was not interested anymore in discussing things related to his illness. It was as if he had already resigned to the fact that he didn't have long to live now. And he simply didn't have the energy to discuss anything either. I often thing that all he could do at that point of his life was to fight for survival and that took all his energy.
But of course there was also another part still active in him - the part that was still thinking clearly and had a wish to live - and that part wanted to be as independent and in charge of his life as he used to be. It sounds like a bit of a contradiction, but for those of us who have accompanied somebody through this decline we know that it is not a contradiction at all.
I want to mention here that Paul went to the dentist on that day to get some fillings done. Looking back, I don't think that was a good idea. We hadn't discussed this with our oncologist. And I think he wouldn't have told us to postpone the appointment anyway. But if I was in the same situation with a relative all over again, I would not let them get any dental work done when their immune system is so compromised already.It is too dangerous because the smallest amount of bacteria is enough to cause another infection in the body that a person with normal immune function would fight straight away so that the person wouldn't even notice, but somebody whose system is so ery compromised does not have the same ability.
Paul came home from te dentist and told me that he had been very sleepy in the car and that he felt that it was no longer a good idea for him to drive as he felt he could fall asleep any moment.
I cannot remember the next two days except for that they were not too bad and Paul seemed to improve slowly. He was not breathless and seemed to have a little more strength altogether. What continued to get worse, however, was the disorientation. He was more and more saying things that didn't make sense. Like, for example, one day we came back from a little walk and he said, "I wonder what the grand-parents would say..." "What grand-parents?" I asked. "What?" he asked, and he could not remember that he had said something about grand-parents before. He also asked me a number of times, "Did you get your operation done yet?" When I asked him what he meant he dismissed it as a joke but I knew he hadn't been joking. They were just things that came into his mind, somewhere out of consciousness, and he spoke them out loud because he was no longer that present to notice what he was saying. It was frightening. Back then, I didn't really understand that this was due to the toxins building up in his liver which was slowly failing.
On Saturday morning, I woke up because Paul was moaning in pain beside me. He was so weak, so disoriented, so sick. It was the day of his beloved Leinster Rugby team playing its second last game for the season. I talked Paul into buying Sky Sports for a month so that he would be able to watch the match. He said, "Maybe I can go to the pub and watch it..." "No," I said, "I wouldn't let you go to a publ. Common, buy the Sky Sports channel. It's fine. I would love if you could watch it." I wanted him to have something to enjoy and look forward to. And so he bought it. We went out for a little while after lunch and I was shocked to see how weak Paul was. I felt his pulse and it was racing. When we came back home, I asked him if he wanted to go to the bathroom because it suddenly struck me that he had not been all day. He said, "No, no, I don't have to go." Looking back, I know that my alarm bells should have gone off. But they didn't. Instead, I switched on the TV for him and prepared some food for us. He watched the match with so much less interest than he would have previously done.After the match, we tried to watch the Eurovision Song Contest but we were both too tired to watch it and went to bed very early.
The next morning, Paul was even worse. Over breakfast, he told me about the play we had been to the night before, he said that there had been so much water on our bed last night and he was wondering where it had come from... He was not clear at all and drifted off all the time. He didn't have breakfast - well, only a tiny sip of the tea I had made for him. After breakfast, he wanted to go out for a little bit. But only one block away from our house he had to stop and sit down on the pavement. Please never let anyone who is so weak sit on something as low as a pavement! When I wanted him to get up so that we could go back to the house, he couldn't stand up, and even trying to pull himself up on me didn't work, and eventually a lady who was passing by had to help us. Back in the house, I rang our niece (actually she isn't our real niece but a very close family friend) and asked her to come over in the afternoon. "I don't know how much time you have to see him..." I wrote in my text. She came over in the afternoon and brought an Irish Times for Paul and a cake. The three of us had some cake and a little chat. But it was very difficult for Paul to concentrate on the conversation. At one point he went upstairs to the bathroom. Jacqui and I stayed downstairs. She looked at me and said, "It's not going to be long now." We had a few tears but I still didn't want to believe it really. Later she told me that when she had been alone with Paul for a few minutes while I had been in the bathroom he had said to her quietly that he had had enough. Jacqui went home and Paul was sitting down with the newspaper on his lap. But he couldn't read. A number of times I came into the room and he always seemed to come back from very, very far away. At 8 o'clock he said, "It's time to go to bed." It seemed as though he had lost all track of time, whether it was morning or evening, daytime or nighttime. He was half there and half already in another world I think. There is really no other way to describe it. I brought him to bed.
When I had finally undressed him and he was lying on his pillow I started to cry. I cried and cried. Paul looked at me and asked, "Why are you crying, love?" "Because I don't know how you are going to live," I said, "I don't think they will be able to do Chemotherapy with you tomorrow! You are too weak!" He said to me, "Of course they will. They will do Chemo and I will be right as rain again." Today I think that he was saying that perhaps to protect me by not saying what we both knew, but I also think that because he was so confused or disoriented, and no doubt in fear as well, he said it because part of him wanted to believe it too. When I couldn't stop crying I left the room because I thought it would be too distressing for him to see. But I also just physically couldn't stay beside him. I felt such nausea each time when I tried to relax beside him because once I was still I couldn't protect myself from the very obvious truth. Paul was dying and nothing and nobody was going to change that.
For a long time after his death I felt bad for not having held him all the time that night. I just couldn't. But I wish I had been able to. It would have been lovely.
On Monday morning, I got up really early. I hadn't slept at all and had only stayed beside Paul in bed so as not to wake him. He seemed to be in a very deep and heavy sleep. . I had four or five cigarrettes out the kitchen window while sipping coffee that I had made far too strong on purpose so that I would wake myself up. Paul was still upstairs in bed. I asked myself how I would get him out of bed, dressed and to the hospital. But I did. In those situations you somehow do what you have to do. It took me three hours to get Paul out of bed, to wash him, to dress him, to stop him from going back into the bathroom where he wanted to shave "to look good to the hospital staff", to get us downstairs, to ring the hospital in advance to let a nurse know that we were coming in and that Paul wasn't well at all and to ring a taxi. I cried all the way into hospital. The taxi driver, a very compassionate guy, spoke with me calmly and at one stage turned to Paul and said, "You are not well, Paul, sure you are not? We will be at the hospital soon." He said that in such a compassionat and kind way, in a way you would speak to a child, and in a way that I had, without noticing it, started to speak with Paul sometimes because he was so fragile and so broken and so so unwell, he just needed that comforting gentleness I felt. The driver turned to me at one stage and whispered, "It is really bad, isn't it?" And I said, "I don't think he is going to make it." And I knew he wasn't going to. At the hospital, the driver got a wheelchair for Paul while I stayed with him. When we arrived on the DayWard, the nurses got a bed ready immediately. I was sitting beside Paul's bed, holding his hand, stroking his cheek occasionally and talking to him gently. Paul wasn't awake for most of the time. The doctors inserted a bladder catheter to drain the kidneys, they examined Paul's abdomen where the liver was very swollen now but where Paul was also very sensitive to the lightest pressure, they took loads of blood, they gave him fluids, and they gave him glukose. But then, about an hour later, I heard the words: Klepsiella infection, kidney failure, sepsis.
Melanie, I was so moved by your writing. I just wanted to say, it really shines through how you valiantly fought for Paul and diligently ensured all the bases were covered and his every need considered. His advocate and comfort.... everything you could possobly do in your shoes you did. It's a million miles away from easy to love someone that much but so special x
To read your posts is like stepping back in time to when my darling hubby got so ill ended up in hospital with sepsis then eventually hospice where he passed away last October although your posts brought tears to my eyes it also has brought me comfort knowing we did all we could for our lovely men and how brave they were your story mirrored mine and as you say when it gets to end of life that is how it is being disorientated is awful and we too went through this I think you are amazing to write all of your journey down in detail and hopefully it will help other people who have Unfortunetly have to go through what we went through with our amazing men xxx
lots of love Pam xx
What a moving post to read. Your love and care shines through every line.what a terribly sad time for you both. I understand so much that you slip away from one another when you should be at your closest. We are floundering in the Unknown. Get comfort from knowing that you did your very best, and it's your time now. Very much resembles my story with my late Husband. The utter despair and confusion about every single thing. You will gradually recover your strength and realise that you couldn't have done anymore. Take care and love.
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