August 2019 - Surgery in Heidelberg

The days before the operation

Unsurprisingly, undergoing surgery in Germany rather than in London presented a few logistical challenges.

As the operation was due to take place on the 9th August, Jane and I decided to travel to Heidelberg a week before.

Our children, who had spent a few days at the beach with Jane’s sister in Italy, arrived a couple of days later. They would be with us until the day of the operation, when they would travel back to Italy. I did not want them to see me immediately after the operation, as I knew I would look terrible and I wanted to avoid any visual traumas for them.

The plan was for the kids to come back to Germany a week after the operation – I was told that by then I should be able to move from the hospital to a hotel, where I would need to spend another week before being able to travel back home. The children would be with us for three days, after which they would fly back to London where Jane’s parents would take care of them for a few days, i.e. until our return. All very simple…

My parents and my sister also travelled to Germany a few days before the operation and their plan was to remain there until I would be free to return home.

As ever in life, things tend to work out differently from the way we plan them. And our trip to Germany turned out to be no exception to this rule.

The week leading to the operation was actually really nice as I was able to go for long walks with Jane, the children, my sister and her kids. My parents were unfortunately not in good enough health to join us, but we spent a lot of time with them at the hotel and during meals.

Fitness-wise, I felt pretty well and, perhaps surprisingly, I was not nervous at all about the impending operation. I kept thinking that my job was to get to the operating table in good health – at that point I would hand over my body to the surgeons and it would be their job to sort something out!

I was hospitalised in the afternoon of the 8th August, had a simple dinner, said goodbye to my children and went to bed quite early. The following morning I was woken up at around 5:30 by a nurse, who asked me to have a shower and to shave my abdomen in advance of the operation.

The operation

Later in the morning a few nurses came to let me know that everything was ready. I said goodbye to Jane, my sister and my parents and I let the nurses transport me to the operating room. Bizarrely, I was still feeling relatively relaxed and very much relieved that the thing I had been working towards during the previous six months, and that was considered a virtual impossibility at the outset, was finally happening.

I remember chatting to the anaesthesiologist, who was very friendly. As he inserted a cannula in my arm and put an oxygen mask on my face, he asked me where I was from and then he told me that he had been to Pisa on a recent holiday. Then he said, quite loudly but still smiling, “Goodnight!” and that is the last thing I remember until I woke up several hours later in intensive care.

I was on my own, feeling no real pain and wondering where everyone was. I got the attention of the nurse in charge, and asked her about how the operation went. She said she didn’t have that information and then I begged her to call my wife as I really wanted to find out whether the surgery had been successful. I can’t really remember how long I had to wait for that call to happen – my memories of those moments are quite confused due to all the drugs I had been given throughout the day.

But eventually I was able to speak to Jane, who told me that the operation was a success and that she would come to visit me as soon as they allowed her.

A while later, one of the main surgeons that was involved in my surgery came to have a chat with me. He was extremely kind and he immediately reassured me that the operation had been successful. He also pointed out that I should not try to remember everything he was about to say as I would simply be unable to do so (partly due to the complicated nature of the operation and partly due to my confused state) and that, in any event, he would come back again after a couple of days to tell me the whole thing again.

Anyway, I now know (not out of memory, of course, but reading the final medical report issued by the hospital) that my surgery was the so called “Appleby procedure” rather than the more standard “Whipple procedure”.

The Appleby procedure is an apparently very complex operation, which in my case, involved the removal of the left part of the pancreas, the spleen, the gallbladder, the resection of the portal vein and superior mesenteric vein. The surgery also involved the resection of the coeliac trunk and the common hepatic artery.

That is an awful lot of stuff that was removed but apparently it is thanks to this procedure that the surgeons could achieve a so-called R0 resection, which basically means that the entire cancer was successfully removed.

The surgeons also checked the conditions of the liver once the abdomen had been opened up and, having conducted a couple of biopsies, satisfied themselves that there was no visible tumour there (confirming the results of the last CT scan I had in London). That was due to the incredible effect of the Folfirinox therapy, which had apparently killed the (more than) 20 metastases discovered at the point of diagnosis.

Recovering from surgery

After the operation, I remained in intensive care for a couple of nights but I have no real memory of that phase despite the fact that I was conscious and chatting away with the doctors and family in between several naps throughout the day.

I was then transferred to the semi-intensive ward where I was sharing the room with another patient. The ward was quite noisy as there was a lot of activity going on, day and night. As far as I was concerned, I was feeling relatively ok, as pain was controlled by effective pain killers and I did not experience any complications.

They got me on my feet quite quickly, which was physically very demanding and cumbersome due to all the tubes I had attached to my body. But it felt good to be able to walk again – a clear sign of progress.

Simon, the managing partner of the company where I work, came to visit me from London for a couple of days. I was very touched by that and I remember having some entertaining chats with him about the status of UK politics where each of us was trying to make predictions about Boris Johnson’s next moves. It was only a few days later that the Parliament got suspended and the UK government was taken to Court. But that is another story…

After three long and disturbed nights in semi-intensive care, I was finally moved to the normal ward, which was a much quieter place. It is then that I received the very welcome visit of our friends Theon and Jose, who live in Belgium and who, from the day of the initial diagnosis, have provided me with unlimited moral support. I remember being quite emotional when they left the day after – that was on Thursday 15th August, and a day later I would receive the visit of my beloved children.

Luckily by then most of the tubes and cannulas that had been placed during the operation were removed, apart from one that was draining liquid from my abdomen. Overall I looked presentable as I had been hoping, although I was not allowed to move from the hospital to the hotel, probably as a result of the more extreme nature of the operation than what had been originally anticipated.

I remember the moment I saw them as soon as they arrived from the airport. I felt quite weak but really pushed myself to look as normal as possible and as jokey as possible. I think it worked – apart from the odd look at the bag that was collecting the drained liquid, the children happily commented on the fact that I looked pretty much normal. I spent time with them chatting about what they had been up to while they were away and then we quickly moved to our favourite topic, football. These were, without doubt, the happiest moments I enjoyed while in hospital.

The problems started when it was time to say goodbye three days later. I walked with them until the hospital exit and stared at them until they disappeared from my sight, after which I made my way back to my room. Partly as a result of knowing that I would not see them for a while and partly as a result of the reduction in the dosage of painkillers I was now given, I started feeling irrationally low and depressed.

Despite my efforts, I just could no longer focus on the positive outcome of the surgery. Surgery had been my sole objective since February and I had never thought how I would feel after it. Suddenly, I started asking myself all sorts of questions: What am I supposed to do now? What is my next goal? And what am I doing here in Germany, far away from the children? Was this whole idea of coming to Heidelberg for the operation a stupid mistake that took away time I could have better spent with my family?

I became tearful, depressed and irrational, with Jane and my parents making huge efforts to encourage me to cheer up.

Things however got even worse when the oncologists in Heidelberg told me that, upon my return to the UK, their suggestion was to do no further chemotherapy since I already had had plenty of it before the operation and there was no evidence that more cycles would reduce the likelihood of recurrence in the future. I immediately shared Heidelberg’s recommendation with my London oncologist – he disagreed and made it clear that, in his view, I should do another three months of chemo to try and kill any residual cancer cells that may still be inside my body. His proposed further treatment would be less harsh than the Folfirinox therapy since I would not be administered the Oxaliplatin drug, due to my chronic neuropathy. So I was now facing two contrasting opinions on next steps, which disorientated me even further.

Moreover, my physical recovery was taking a while and it was not clear when I would finally be allowed to leave the hospital. Especially given that suddenly, what had been a slowly positive trend, became a negative one.

An unwelcome complication

A week after my children had left, I started feeling very weak and blood appeared in my stools. The doctors got very alarmed by these developments and they signalled to me that they feared I was suffering from internal bleeding of some form.

I was quickly moved back to intensive care. An emergency CT scan was organised to find out where the source of the problem was. This did not result in any scary findings while a gastroscopy I was asked to undergo on the same day revealed the presence of a large 3cm ulcer in my stomach, which was identified as the source of the bleeding.

My poor parents, who had literally just left to go back to Pisa, made immediate plans to come back to Germany given the deterioration of my conditions.

Being back in intensive care had a further negative impact on my mental state – I didn’t really know how serious the situation was and it became even more unclear how long it would take before I could go back home.

I spent one night in intensive care and was then transferred to the semi-intensive care ward. The level of my haemoglobin, a protein contained in the blood that carries oxygen from the lungs to the rest of the body, was constantly monitored every few hours: it was stagnating if not falling and so was my energy level. In the end the doctors decided to give me a blood transfusion.

Back to the normal ward and, finally, back home!

My condition slowly started to improve and after two further nights I was transferred back to the normal ward. Mentally, I was far from recovered but I did manage to make up my mind on what to do once back in London. I decided that I would give myself a few weeks to further recover from the operation and then restart chemo as suggested by my oncologist.

The rationale behind my decision was the same as the one that drove all my actions until that point: doing absolutely everything to get better for myself and my family. In this case, I thought that, should I opt for no more treatment and should the cancer come back, I would always wonder whether undergoing further chemotherapy would have prevented this from happening. And I would find it very difficult to deal with that situation.

Establishing a new goal after surgery had the welcome effect of lifting my mood. A visit from my old friend Ana, together with Jane and my parents’ constant support, also contributed to the improvement of my mental state.

Moreover, as my physical condition got noticeably better each day, I started negotiating heavily with the doctors on the timing of my release. Each day was identical to the previous one and I got increasingly restless. Understandably, the doctors wanted to be cautious, especially after the ulcer complication, but they eventually agreed that it would be safe for me to leave the hospital on the 2nd September and travel back to the UK the following day.

So after 26 days in hospital, I finally managed to leave. It was the day of our wedding anniversary and Jane and I decided to celebrate with a dinner at a, needless to say, local Italian restaurant. The following morning, after an emotional goodbye to my parents, a relatively cumbersome flight from Frankfurt to London (where I had to rely on wheelchairs at both airports) and a taxi ride from Heathrow airport, Jane and I finally got home where Thomas, Alberto, Giorgio and Jane’s parents were eagerly waiting for us.

Jane and I had not seen the children for 16 days – an unprecedented situation. But, despite feeling exhausted and frankly in a lot of pain, the joy of spending the rest of the day with them was immense.