Seconds out… Round 2

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”
― Frank Herbert, Dune

2015 was a very tough year. In detail, in fact, it carried a lot more depth than just that. The complex nature of my life experience carried with it moments of intense fulfilment. Also, terrifying challenges and truly staggering difficulties. The ‘tough year’ part though, it was something I wanted to start with in this post. It began at the beginning of January, initiated on my birthday. Basically, every single time that sometime ‘fun’ was planned, immediately beforehand, something shitty happened. This became consistent, like a stupid ongoing joke. Birthdays, celebrations, parties, holidays and get-togethers. Something cool would be planned, and immediately beyond hand something difficult would reveal itself. It was relentless and became such a consistent process, I actually started to find it (somewhat) darkly humorous. The reason I mention all this is to explain that just before the Christmas of 2015, I got a MRI scan date. The schedule ended up setting my meeting with the Oncologist for the result, just 6 days before Christmas. After everything that happened, as much as I tried to keep a positive thought process, I started worrying that the result wasn’t going to be good. So, when I sat down with my Oncologist and she took a long breath and gave me some difficult results. The bad news actually didn’t surprise me. In fact, the results from the scan were not good, but also not as bad as they could be. The latest MRI basically contained a change in the signal within my brain, in a different part of my brain from the original location of a tumour. Whilst the change was most likely a worry for sure, it wasn’t actually a tumour. At least not and this point. The cancer team didn’t really know what it meant, but they felt it was probably not good. There was a very slight possibility that the signal change might disappear; most likely though, probably it wouldn’t. That was pretty much the full extent of the discussion with the Oncologist. After telling me that the scan was ‘probably not good’, she also told me that if it was a tumour, they also wouldn’t be able do any surgery. If it’s a tumour then, they are thinking they’ll have to give me some Chemo and see if that does any good. She ‘sort of’ made me laugh at the end of the conversation; she said “have a lovely Christmas!” Then it was time for me to go home. The last thing she told me was that I will have another MRI in a month’s time and they will see what is happening. If the signal change disappeared, then I can forget about it. If it doesn’t then I’ll need treatment. I had to then go home and tell my wife the difficult news. Christmas and New Year became a different kind of experience. We had to confront the likelihood that these could well be the last times I am alive for these events. In fact, as the kids had just finished school, we found ourselves immediately in the Christmas experience. It was a beautiful time together as a family. The love and strength allowed my wife and I to push the fear into the background. Christmas and the New Year was an enjoyable time and I felt very happy. However, after a crazy New Year, the kids went back to school. I found myself confronting fear once again. I did some research about my apparent condition and things didn’t look too good. Without any surgery, Chemo would only likely keep me alive for a number of months. It was almost certain that I would die in less than half a year. I’m not embarrassed to admit that I felt a new level of fear and depression. It was worse than any feeling I had ever felt before in my life. One morning, I decided to go for a walk through our local race-course. I felt desperately trapped and lacking any potential hope or reason to stand-up and live my life. As I walked round the empty heath in the middle of the course though, the sky was incredibly beautiful. The sun shone through lines of thin, amazingly strange clouds. Light streamed through tree branches and powerful, continuous wind skirted through the grass. Walking though the wind was tough, but exciting. For a moment, I was completely on my own. My mind cleared itself of thought and emotion. The noise of nature was so loud that I experienced a moment of no loss, fear or regret. It was a truly incredible experience. As the wind died down, I felt that fear had detached itself from my body and brain. I suddenly realised that fear had been part of me, ever since I was diagnosed with the cancer. I understood that this fear had become a cycle that was controlling me. It was holding me back and restricting the value of my existence. I was suddenly very clear; if my remaining life was going to be short, I strongly desire to enjoy whatever I can to the maximum. With a clean slate, the despair that I was feeling left me. I felt that I needed to put a bit more effort into looking at any options I might have. Even extending my life a little could have great value for me. After the instructions I got from my Oncologist, about the fact I couldn’t have any surgery, I contacted her again. I asked about any potential clinical trials I might be eligible for. She immediately told me that she had recently done some research and could tell me that nothing was available in this country. I was frustrated, but decided to take a look myself anyway. Firstly, I spoke to an old friend of mine who I hadn’t had contact with for over 20 years. She had found out about my illness from this blog and had sent me a very kind email to say hello. It turned out she was a very successful individual with a role that locates people to get into clinical trials. I also spoke to my wife who contacted a close friend of hers who is an Oncologist in London. Her husband has the same brain cancer as me. She was able to share some details of the leading Oncologist in London; this man specialises in clinical trials for individuals with GBM. Between the two of them, I managed to identify 8 potential trials that I might be eligible for. It was a little step forward, but it felt a tiny bit better than the reality I had been told until that point. I went back to my Oncologist and asked politely if she would talk to the clinical trial leader in London. She did so, and almost immediately she arranged an appointment for me with him. I got myself together. I managed to get copies of all the MRI results and as many other letters I could find that might help me. I went up to London to meet him. When I met him, (Dr. M), he was a very powerful and impressive individual. He was extremely intelligent but had a kind and patient manner. I was very nervous when I met him, but he made me feel relaxed quickly. As well as himself, he was also accompanied by a fellow Neurosurgeon. He explained that they always met patients together. The purpose was to look at all the potential treatment options that might exist. Having introduced themselves, the first question he asked me was “so how can we help you?”. I was a little bit confused by the question. I had assumed that my Oncologist would have already talked through the issue I was trying to address. I took a step back, and explained my effort, based on what had happened with my MRI. He then showed me that he had a copy of the MRI scan electronically. He and the surgeon had already looked at it in detail, in preparation for the appointment. He then said something that really surprised me. “The MRI looked great, really healthy. You’re doing really well - amazing amount of time without anything too bad showing”. I was pretty much stunned by this comment. I explained that I had been told that it was most likely the beginning of a new tumour. I explained that I had been told that surgery would be impossible. He just stared at me for a couple of minutes and then turns to his surgeon and then looked back at me. “Well, our analysis is that we don’t think you’ve got too much to worry about. However, if this minor change was to turn out to be an issue, the surgery would be very straightforward”. The surgeon then confirmed that he would be happy to remove the potential area if it ended up being needed. He actually offered to do the surgery for me if I wanted it. Dr. M then also told me that there was a great new potential clinical trial that I might be eligible for. He agreed to do some tests on my original tumour sample to see if I could take a new drug if and when I needed it. After a 1.5 hours of chatting to them both, I left the hospital and things were beginning to look very different to the belief that had motivated me to meet with them. I decided to stop for a coffee before going home and have a think about what had happened. Basically, I realised that my original cancer team had given one set of expectations (pretty bad ones), these new guys have described a situation that was almost the complete opposite. It reminded me a little of some of the situations I experience in some of my own work, looking at ‘Strategy’. Usually, when you find yourself dealing with two different teams, both will contain some very gifted and capable individuals. Sometimes, both groups are thinking complete opposites to each other. The final outcome was often then something that sits within the middle of both separate beliefs. This felt like a good place to sit myself emotionally. I wanted to not be led to believe that things were either really bad, or really good. Once I got back from the appointment, the first thing I did was to write to my Oncologist. I questioned her about the advice that she had given me, which said that I wouldn’t be able to have any surgery. My question asked whether that advice was given by Mr. P. He was the man who did my surgery a couple of years ago. Mr. P was one of the most incredible people I had ever met. I had come to understand through the Internet that he was one of the most talented brain surgeons in the whole world. That’s not an exaggeration. I explained in the letter what had happened and gave the name of the surgeon who had said he could do it. For about a week, I didn’t get any response. This was quite weird because normally my Oncologist would always respond quickly. I started to get frustrated and was thinking about beginning to make phone calls to try and get an answer. Just as I was thinking about this, my mobile rung and to my surprise Mr. P, the surgeon, called me himself. I was astounded that he called me directly. He is an incredibly busy individual and I had never known him able to call people himself. He told me that he had no understanding as to why I had been advised that I couldn’t have any surgery. He told me that if I did need the surgery, he would definitely do it if I wanted him too. He told me that I should have the new MRI scan to see what has happened, and then I should go and meet him to talk about it. In less than a week, my understanding of reality had changed significantly. Firstly, there was a possibility that the MRI wasn’t actually as bad as I had been led to believe. Secondly, surgery would be possible that would massively change the likelihood of my life length. Finally, I might be able to be put onto a clinical trial that again might be beneficial to my survival length. A couple of weeks later I had the next MRI scan. A few days after I went back to Oxford to re-meet with Mr. P. It was the first time I’d seen him in a couple of years. Arriving back after the long gap since the first surgery was a very interesting experience. I remembered from the times that I ever visited him, I found the trips as being truly terrifying. Visiting again this time felt more like a dentist appointment than it was the worst experience of fear! Meeting Mr. P again was an incredible feeling. The man is one of the most impressive individual’s I’ve ever met. Meeting him again and talking to him about my options felt amazing. I genuinely felt gifted and incredibly grateful for having someone like him on my side. The latest MRI scan had shown that the signal change had increased again, so whatever change was happening was getting more significant. No one really knew what it was though. It wasn’t a tumour, at least not yet. If it was the very first stage of a tumour, it wasn’t yet a grade 4 version. There was a possibility that it might be something to do with the radiotherapy that I had, although that seemed unlikely. At the end of the day, the recommendation was that I should get it removed from my brain and it can then be tested and they can work out what it is. If it turns out it’s the beginning of a tumour, then removing it is great. If it turns out it’s not a tumour, then that’s good news as well. Selfishly for me, the coolest part was that I wouldn’t have to be awake for the surgery this time. This was because the location of the operation was not as risky as the first time round. There was no doubt in my response. I said “OK, I’m ready - as soon as you’re available, I’d like the surgery”. Mr. P said it would take about a month and that he would arrange the date for me as soon as possible. I left feeling positive and preparing myself for the surgery. As I waited for the date of the surgery, I decided I had to stop working. I bitterly regretted having to stop work again, but I also understood that it would be foolish to try and continue. Firstly, there was a risk that the increasing change in my brain might make me start having seizures. Also, the surgery itself carried a risk, (1% - 5% of people having this surgery will die). Finally, after the surgery I will need a long time to recover. I may also need to be put onto Chemotherapy again. I accepted that I needed to use as much time as I can in preparation. I wanted to be with my children, look after my family and basically get myself together for what was about to happen. During the 4 weeks before the surgery, I got notification that I wasn’t eligible for the clinical trial that I was tested for. I was disappointed, but it was just the results from the genetic testing on the original tumour. I let go of the upset on that, and instead concentrated on preparing for the surgery. The surgery was originally booked to happen on 3rd March and I arranged everything I needed in terms of help and support from friends and family. I also arranged to stop taking the huge amount of drugs I’d been taking to try and slow down the cancer development. I got a big surprise on 25th February when I was called and asked to come into the hospital the next day. Some dates got changed and they needed me to have the surgery on 27th. If I couldn’t go immediately, I would have to wait longer to be dealt with. After a lot of running around, I got taken into hospital the next day. On arrival, Friday, I had another MRI and then had the operation on the Saturday. What was incredible was that the MRI which happened another 5 weeks after the last one, it hadn’t changed at all. Whatever was happening, it wasn’t getting any worse. This was great news to hear. The surgery was then done whilst I was asleep. Compared to the first one where I was awake, I wasn’t really scared and slept really well the night before the operation. After I was woken up, I was told the surgery had gone well. I stayed overnight and then got sent home on the Sunday afternoon. I was really looking forward to getting home and desperately wanted to sleep in my own bed. Unfortunately, I was only home a few hours and I started to become very unwell. My sister took me to A&E in Reading and I was given a massive amount of injections, drugs, scans and X-Rays. There weren’t sure exactly what was happening and I was so off my head on drugs that I could hardly remember what happened. They sent me home again the next day, but once again I became very ill again within a couple of hours and we had to call an ambulance. I was in so much pain in my head, I couldn’t even talk and I was fading in and out of consciousness. I was given a large dose of Morphine which just about allowed me to communicate but I was in a terrible state. The ambulance team were incredible and they arranged to take me back to Oxford to be dealt by the same surgery ward. I ended back and had more scans, MRI’s, Xrays and numerous drugs and injections. It turned out that I had some sort of infection and I also was suffering from some serious pain within my jaw muscle. They had to cut through the same scar from the first operation, the pain was truly astonishing. I was pretty much in and out of consciousness for 2 / 3 days, but eventually started to come out of it. Finally I was sent home again the following Friday. In fact, whilst the week after the operation was tough, the surgery itself was pretty successful. The strange area in my brain was removed and is now being tested to find out what will happen next. It will take me a few weeks to recover from the operation, but I should be able to get out of bed and start living again pretty soon. The next stage of my life will be to find out what the issue with my brain was, and what that will mean that I have to do next. It might mean that I’ll have to start Chemo again but it might mean that I don’t have to. If I don’t have to, I’ll go back to having MRI’s every 3 months. Once I’ve got my own strength, I can start living again. I’d love to be able to go back to work again. I miss my boss and the people I work with. It would feel amazing to reclaim the (sort of) normal experience that I was having. I can’t expect all this though. I have to accept that right now I don’t know what this all means and where it will take me. But right now, I’m still alive. I feel happy, I feel grateful. I love my wife; I love my children. My mum, my grandma, my sisters and their husbands, my wife’s brothers and their wives and my father & mother in-law have helped us. My surgeon and his team have been incredible. I feel blessed - beyond my ability to even articulate properly. I’m still alive. Do you know the most powerful feeling though? I’m just not scared anymore. It’s why I included the Frank Herbert quote at the beginning of this blog entry; “Where the fear has gone there will be nothing. Only I will remain.” Go here to the start of the journey. Go here to view previous blog entry. Go here to view the next blog entry.