"You see," the oncologist said calmly, "what has happened here is that your cancer has spread into the liver."
I can still remember the shocked silence in the room. Even though we had been expecting to hear this, when we actually heard it, we felt really shocked.
I don't know what Paul was thinking, but I know that I thought: Once cancer has metastasised to the liver it is really bad.
The oncologist read out loud from the scan report, "Half of the liver tissue has been replaced by the cancer."
"So what do you suggest?" I asked. I needed him to say that there was something we could do, a good chance that we could treat the mets and get the cancer in the liver under control again.
"There is the option of Chemotherapy," he said, "but I would even say to yourselves is Chemotherapy even going to work... But you should try it."
Looking back today, I feel that the way he was saying this was really not a good way. It may have been true, but we all know how important it is that the patient believes in a positive outcome of his or her treatment in order for the treatment to be able to work properly. In other words: What the doctors say when they give a patient medication or therapy determines to a large extend how the patient responds to the treatment. What our oncologist said to us on that day was perhaps honest, but it also sounded very hopeless. Perhaps he could have said something like, "It is really a very serious diagnosis, Paul, but our Chemotherapy drugs are good today and we will do whatever we can" or maybe, "We try the Chemotherapy and it often has a very good result". I was glad that Paul seemed to be unaware of what the oncologist had said. All that Paul had heard and understood was that his only option going forward was Chemotherapy.
I asked him, "Would another hormone therapy still be an option? Or maybe immune therapy?"
"No," he said firmly, "we have gone beyond that."
After a short time of thinking about it, Paul agreed to Chemotherapy. And an appointment for the first consultation followed by the first infusion of Docetaxol was set up for the following week.
Even though we both knew that it was a very serious situation, we felt kind of elated going to the first treatment because we were hopeful that now that we were doing something against the liver mets Paul would feel better soon. I had the desperate hope that we had not discovered the mets too late.
The first infusion went well. I could take Paul home with me afterwards. He needed a lot of rest over the next few days. The symptoms from before didn't change. They didn't get worse, but they certainly didn't get better either.
The second infusion went well too. Paul didn't seem to have many side-effects from the Chemo drug itself but still suffered a lot with his symptoms which, as we now knew, came from the spread of the cancer which, this time, was more aggressive than ever before.
After the third infusion, when Paul was feeling so unwell with his symptoms that he thought about stopping the Chemo, I emailed his oncologist and asked if we could move the scan which had been planned for after the fourth infusion forward to now to see if the Chemotherapy had any effect so that, if not, we could save Paul more suffering by discontinuing it. He agreed. So in the following week Paul went for another set of scans. The scan results showed that there was no change to the cancer in the liver. Paul's PSA was very high too but we were all agreed that we shouldn't pay any attention to this now as our main problem was the liver. The doctor and I spoke about our options and agreed on trying Carbo Platin. When I look back today, I am surprised that we didn't do Carbo Platin straight away since this is the Chemo drug used for secondary liver cancer most of the time.And, when I look back, I am also surprised to find that Paul was not involved in this decision-process. It was like he didn't care so much anymore. When the oncologist and I spoke about Carbo Platin, he simply said, "Yes, I can only say yes to whatever you say is right." That was because he had never looked himself into his options. It really astonishes me to this day how he was able to do this.
Paul's first Carbo Platin infusion went well and, for the first time, he was almost symptom-free a couple of days after the infusion. We were hopeful again. Maybe Carbo Platin was the right drug now, maybe it would kill all the mets in the liver, and maybe, maybe we had a good chance of much more time together with the help of this drug.
I remember very distinctly one evening during that time when Paul and I were sitting on the couch and listening to music. We did that sometimes: sit together and taking turns in saying what song we wanted to listen to on Youtube. I remember that at some point I said, "Let's play 'Suzanne' by Lenard Cohen." I knew that it was one of Paul's favourite songs and it had become one of my favourite songs as well. When we listened to it, Paul suddenly burst out crying and said sobbing, "I wish I didn't have to leave you so soon! I don't want to leave you so early!" And that brought my tears which I had held back so well over the past weeks to the surface. That was the only time during the nine months of our journey with Chemotherapy that Paul and I cried together over the diagnosis and the impending loss.
Autumn of 2017 passed with appointments for Chemotherapy infusions, appointments for blood tests, appointments for consultations, appointments with the palliative care team that came to visit us once in a while to see how things were going, with a lot of time at home together and with occasional visits from family friends. Slowly I became Paul's carer in those months. Not only because he couldn't do much any longer but also because becoming the carer for him and taking charge of the household, his medication and whatever else was to organise in our lives gave me the sense that I could be a little bit in control of a situation that seemed so desperate that it threatened to overwhelm me at times.
Our relationship was strained in those days. On one and, we were desperate for closeness and for spending all our time together. On the other hand, Paul needed time to himself from time to time - perhaps to process it all in his own way - and I found that difficult to accept. He found it difficult to accept that I did most things around the house and cared for him, he had always been somebody who wanted to be independent so this was difficult to get used to.
The next set of scans in November revealed that the cancer had shrunk ever so slightly. Again, we were so happy. It was only a little bit and less than we had hoped for, but, hey, at least it hadn't grown!
I was still working during all that time. But I began to schedule fewer and fewer appointments. I got the sense that I needed and wanted to be at home with Paul as much as possible. When I was not there, he would sometimes forget to eat or make himself a cup of tea but then forget that he had made it... I just felt it was safer when I was with him. So I cut down on work very much before Christmas of that year.
Christmas itself was kind of nice because we had a tree and we had a lovely Christmas dinner, but it was also sad because we both couldn't help thinking, "This may be our last Christmas". And it would be.
Paul's last of six infusions of Carbo Platin was on 28 December. After that he would take a break from it for a couple of weeks. He was looking forward to it, whereas I was more worried than anything else because I thought, "How long can we make this break? We have to make it longenough for his body to recover but short enough so that the cancer can't start growing again".
During the Chemo break I cared for Paul more than ever before. I said to him more than once, "Paul, all you need to do is do the treatment and keep strong. I will do everything else." I prepared all meals of the day for him and made sure he had a very balanced diet so that his body would get a lot of energy and have a good immune response. I brought Paul for short walks - always thinking that they shouldn't be too short but not too long either so that he wouldn't get exhausted. I made sure he had plenty of rest and actual sleep during the day. I had stopped work in January so I was at home all the time now
