In autumn of 2016, Paul and I had come to one of our regular appointments with the oncologist. We were so sure everything would be fine. But the oncologist informed us that Paul's PSA had gone up a little. He said that there was no need to get worried just yet but that it seemed like Zytiga was slowly losing effect.
I remember that we drove home in silence. The minute we got in, Paul switched on the TV and tried to get lost in some of his favourite TV programs. I rang one of my friends back in Germany and had a good long cry.
We had been going along thinking that nothing could stop us from being so happy and carefree and we had pushed Paul's cancer and the information that Zytiga would eventually stop working to the back of our minds. But on that day in the doctor's office, we were confronted with the reality yet again. We both knew that Zytiga had started to fail, that Paul's PSA would continue to go up and that we needed to find another treatment for Paul soon.
I signed up to the McMillan Forum and joined the Prostate Cancer group. (Later this would be followed by the Carer group. And now I am also in the Bereaved Spouse group.) I also signed up to Health Unlocked. I began to read everything I could get my hands on on Prostate Cancer, cancer treatments, complementary therapies used for cancer patients... I had to find a way to help Paul! I had to find a way for us to have more time!
What is interesting - but I think very common - is that Paul did not sign up to any of those groups and he did not read about his cancer at all. At the time, I found that very difficult to understand. I felt that, surely, he would have to be interested in finding a cure for his cancer or at least a way to control his cancer. Looking back on it today, I think that Paul had long accepted that his cancer was incurable and that sooner or later all treatments would fail and that he would die from it one day. Paul was suffering with Depression and a feeling of not deserving to be in this world for most of his life; he often told me that I had given his life meaning and that he now had something to live for. But I somehow believe that these low feelings about himself were another contributory factor when it came to his acceptance of his cancer; it was somehow like he didn't expect life to treat him any better.
We had a good Christmas that year. I have audio recordings from Christmas morning and we sound so happy and cheerful. I think that, although we were a little worried, we still didn't allow the cancer to take too much room in our life.
In January of 2017, I listened to a radio podcast from Deutschland Funk where some doctors from a hospital in Munich spoke about LU177. LU177 was only in its beginnings back in 2017. It is a form of radiation treatment that works particularly well for bone mets. Cancer cells have a protein on their surface called PSMA. Patients have to undergo a PSMA PET scan which will determine whether their cancer cells show enough of a protein called PSMA on their surface and, if they do, patients will be given a protein that binds to the PSMA protein on the surface of the cancer cells. This protein is charged with radioactivity. So when the charged protein reaches the cancer cell, it binds to it and the radioactivity destroys the cancer cell. Forgive my somewhat inadequate description of this process, I am not a medical person. Anyway, I was absolutely determined to find out as much as I could about this treatment. I spoke to the hospital in Munich and to the hospital in Heidelberg. I sent them all of Paul's documents from the hospital here in Dublin. I even went so far as to make an appointment for the first consultation.
In the meantime, Paul's PSA results were changing. They went from 3 to 5; then from 5 to 7; then from 7 to 10; then from 10 to 11; and then, just as we were getting ready to go over to Germany for our first LU177 appointment, the PSA dropped to 7 again. "Maybe we'll wait for a bit and see what happens first," we told the doctors in the German hospital as well as our doctor here.
We somehow had the hope that, once again, we would be very lucky. I often though that perhaps our love and closeness, that very special bond that we had, would help Paul to live a much longer life and somehow the cancer would stop growing.
However, I had a sense that something wasn't right. I asked Paul's oncologist to perform another scan, even though from the test results it didn't seem necessary to do it. He said to us, "The patient is not in pain and the PSA level is low. In this case we don't have to do another scan." I will never forget this conversation. From my point of view, the doctor made a really severe mistake on that day; and partly I am to blame as well because I didn't insist on the scan. The PSA level is only one indicator for Prostate Cancer. So there is really no reason to think that just because the PSA level is low the patient's cancer isn't growing. But, also, in people with advanced Prostate Cancer the cancer sometimes changes into forms where it no longer shows PSA. This is especially the case when the cancer spreads into an organ such as the liver or the lungs. So we should have had the scans. If we had had the scans in April of 2017, we would have found the liver mets and could have started treatment sooner. Paul's oncologists were so good in so many ways, but this once they made a very serious mistake.
We accepted the fact that we wouldn't get a scan done. We felt quite confident about everything. A scan didn't seem to be necessary so the doctors were obviously not too worried. And we had LU177 in the German hospital that we could always go for should there be a change in Paul's situation. So the situation seemed serious but under control.
We went to Marokko in May. We didn't know that this was going to be our last holiday abroad.
While on that holiday, Paul started to feel unwell: retching and nausea, lack of appetite, weakness. But we decided not to get upset.
When we were back in Dublin, I discovered a voice message on my phone from the hospital that, for some reason, I hadn't been able to pick up in Marokko. The hospital had told us that Paul's last PSA reading, done just before our trip to Marokko, was 27 and that we should come in for another reading as soon as we were back.
The next PSA reading was done in June. A couple of days later, Paul had gone out shopping and had left his phone at home, and when his phone rang I decided to answer it because I kind of knew it was the hospital and something told me that the news wouldn't be good and that maybe I should receive them first and then give them to Paul. The oncologist told me that the last PSA reading had been 89. "We will get another scan done now," he said. "So Zytiga has really stopped working now?" I asked. "Yes," said the oncologist, "it has stopped working." "And what is the next thing we could do?" I asked. "Could we do LU177 in Germany now? Or do we have to do Chemotherapy?" "We will have to discuss when you come in to talk about the scan results," he said. I put the phone down and started to cry. When Paul came home, I ran to the door, hugged him, held him close to me and cried and cried before I was even able to tell him what had happened. Paul was very calm. It was almost like he was saying to me, "Yes, darling, now the time has come. We knew this was going to happen."
Paul was called in for a CT scan and a bone scan in the following week. We were expecting to get the results within a couple of days.
Since we didn't know what to do with ourselves in this time of uncertainty, we decided to spend our second wedding anniversary in the West of Ireland. We went to Doolin and took the boat over to one of the islands in front of the west coast. Unfortunately, this short break was not a good idea. Paul was very sick with vomiting, constant nausea, weakness, lack of appetite and pain on his right side in the area of the liver. We went back to Dublin after two days and decided to go to the hospital the following day. What worried us most were the pain in the liver and the weight loss that had started again. Paul's oncologist wasn't around on that day. But we were able to see a different oncologist who had a brief look at the scan results that had come in the day before. He said to us that he couldn't say much and would prefer leaving it to our own oncologist to discuss the scan results with us but that there was some liver involvement.
