August Update
This was written with the intention to be posted at the start of August, I just didn't get around to it. So transport yourself back to those hot (I think?) summer days...
The rest of the second cycle was uneventful, keeping myself busy and doing the usual but also finding myself more anxious about the up and coming scan. My bad feeling this time seems to have been well founded. The results showed that there was a new growth on the lymph node near my esophagus and slight growths on the tumours already in my lungs and surgical bed. They also lit up more in the PET CT scan, indicating that they are slightly more aggressive than before in regards to how quickly the cells divide and how the cancer spreads.
I can’t remember how much information I’ve given about the situation before so here is the lowdown. Other than surgery, there was only one approved treatment line offered by my hospital and which is agreed by oncologists worldwide to be useful in fighting this type of cancer. Whilst it was effective at first and enabled the surgery back in January, it is now no longer working. Surgery is now ruled out whilst the cancer is growing and not stable. So as quickly as that, I have run out of standard options.
Even though I had expected the worst, as I always do in these situations, I don’t think anyone can be truly prepared for it. I had a pretty torrid weekend after the scan results and became a bit run down and weak which I thought was a pretty natural reaction to bad news. By Monday though things had become worse and I spent a lot of the day in bed with zero energy. I dragged myself out for a walk in the evening and after walking 100 meters and needing to lie down on a bench I realised the symptoms were worse than I had thought. When I had to sit down on the grass on the walk back to my flat it was clear another hospital visit was in order.
Next thing I know I’m back on the IV, breathing gas and with an ECG attached to ensure my heart was behaving itself. I was having an adrenal crisis, caused by having too low cortisol. In a healthy person when they are run down their body produces more cortisol to help the immune system cope, but as all of mine is taken in pill form and my mind was elsewhere, my immune system didn’t get the help it needed with additional dosing. This led to a spiral of dehydration, making me more ill and raising my potassium – the same thing that forced me in to ICU back in February. This time was a lot more dignified with a lot less nudity and after one very long night of being treated I was fine. But days in the hospital are very long (note: a first world problem and quite insignificant in the grand scheme of things but they still haven’t changed the films available so I ended up watching Jason Bourne again - if anyone from HCA is reading this please take note) and gave me a lot of time to think. Although I knew the rough details I decided it would be best to know exactly what my situation was. Apart from a line of treatment offered by the NHS which I have read about called GemCap, which is usually used for pancreatic cancer and is not that effective on ACC, the options available are all deemed experimental.
In my head I already knew this was the case but being told it by a doctor makes it all seem a lot more real. Jason Bourne wasn’t quite as important anymore and I had a few hours of really contemplating what this meant before I left the hospital. After I had shed a few tears and taken out my frustration on one of the junior doctors who had come in to tell me I was fine to go home but ended up doing a great job counselling me along with my friend, I felt a bit more normal and went home. Somehow I ended the night in my lounge surrounded by people I love, laughing.
The next week my oncologist put me in touch with the clinical trial team and we discussed a Phase 1 trial I am eligible for. Phase 1 clinical trials are the first time the drugs are used on humans and the aim is to check how bad side effects are and discover the highest dose humans can tolerate. They and not often targeted to any particularly cancer types. As such, they tend to hit you very hard with a very low lack of success in even making it to Phase 2. The more I’ve read about them the less they appeal and if the only thing on offer is a non-targeted Phase 1 drug, I am currently leaning against it.
I’ve been told I’m brave a thousand times over the last few months and each and every time it felt undeserved. As most patients of any disease would say, you just do what you do to get better. But I do think that if I was to refuse treatment it would be the bravest decision I’ve ever made. It’s not like I don’t think I could go through treatment again, and there was at no point in the last year where it didn’t feel entirely worth it, even during the lowest, most painful moments. Also, it isn’t like I’m giving up on life. I rather like it, and after only a few days out of hospital I’m feeling good, physically and (so far) emotionally. I have energy and my hair is starting to return. I won’t count my chickens too soon as I remember what happened when I was diagnosed last year, with the first few halcyon days turning out to be some deep seated denial and then going through turmoil for a few weeks where I barely slept and felt constantly on the verge of having a panic attack. But, seeing as I am currently healthy - extracurricular hospital visits aside - it seems like a waste of precious time to put myself through something that has such a little chance of making any kind of difference.
I’m not ruling out further treatment at all and I am meeting other doctors and emailing some abroad to see if there is anything that appeals, including a more promising Phase 2 trial in Germany which I may be eligible for which would mean living in the middle of Bavaria. But I don’t think I want to sacrifice healthy days where I am able to really appreciate things in order to become the closest thing you can get as a human guinea pig. I completely understand and respect those that do, but to me it doesn’t seem like time well spent.
This isn’t to say that I have worked out the great meaning of life and know exactly what to do with whatever time I have left. It is a very weird feeling to know you have the potential to do a lot of things but perhaps a very limited time to do them. Any long-term plans years into the future are obviously out the window. It did save me time from creating a fantasy football team which seems like time wasted even compared to previous years where I would stop caring after a month. It feels in a weird way like being on a holiday, where you have to squeeze all the activities in before its time to go home, and wondering if you are doing the right thing and having the most fun without missing out on another opportunity. Put that on steroids (and steroids are absolutely necessary if you want to put yourself in my shoes) and that’s the situation I’m in. For example, when I’m reading I’m thinking “Is this a waste of time? Should I be reading this or something else? Should I be doing something else entirely? Am I having as much fun as I could be right now?” The answer is pretty much certain to be “no” so I guess I just have to make sure that I am doing whatever I’m doing at that exact moment is good enough without over thinking it. I think that’s going to be the main issue I have over the next few weeks, getting the idea out of my head of having to reach true acceptance and instead just living and enjoying the moment. It will be difficult to find my life’s true purpose when I don't have years ahead of me so instead maybe it’s best just to stop searching.
The idea of some hedonistic weekend bender doesn’t really appeal right now but I’ve always been active and when I can and I’m probably going to continue to be out and about doing things as much as possible. It’s helped by living in one of the best cities in the world surrounded by some of the best people. My love of travel will probably take me elsewhere occasionally as well, if insurance will let me. I’m sure there will be the odd evening watching Attenborough or the cricket and finding time to play the odd game of chess as well. (My God, that last sentence makes me seem like I’m actually an old man.) So, in short, pretty much carry on as I’m going with a few more novelties thrown in. I think that is a good sign that I’ve been living life the way I want to the whole time. Either that or I lack imagination…
To be honest, none of this seems real yet, even after well over a year of being diagnosed and the various small and large bumps along the way. I am typing this out without much emotion and apart from that first couple of hours I haven’t felt any strong feelings of anything, just an underlying feeling of sadness and feeling a bit lost. I have plenty more hospital visits in the next couple of weeks to discuss things so I’m sure things will become clearer as time moves on.
For now, I have discussed with my consultants taking a bit of time off from any treatment (they have all agreed) and taking stock of the situation, getting back in to cancer life some time in October.
 |
| Looking back I'm not quite sure why we all swapped clothes |
The rest of the second cycle was uneventful, keeping myself busy and doing the usual but also finding myself more anxious about the up and coming scan. My bad feeling this time seems to have been well founded. The results showed that there was a new growth on the lymph node near my esophagus and slight growths on the tumours already in my lungs and surgical bed. They also lit up more in the PET CT scan, indicating that they are slightly more aggressive than before in regards to how quickly the cells divide and how the cancer spreads.
I can’t remember how much information I’ve given about the situation before so here is the lowdown. Other than surgery, there was only one approved treatment line offered by my hospital and which is agreed by oncologists worldwide to be useful in fighting this type of cancer. Whilst it was effective at first and enabled the surgery back in January, it is now no longer working. Surgery is now ruled out whilst the cancer is growing and not stable. So as quickly as that, I have run out of standard options.
Even though I had expected the worst, as I always do in these situations, I don’t think anyone can be truly prepared for it. I had a pretty torrid weekend after the scan results and became a bit run down and weak which I thought was a pretty natural reaction to bad news. By Monday though things had become worse and I spent a lot of the day in bed with zero energy. I dragged myself out for a walk in the evening and after walking 100 meters and needing to lie down on a bench I realised the symptoms were worse than I had thought. When I had to sit down on the grass on the walk back to my flat it was clear another hospital visit was in order.
 |
| Doing my best Bane impression |
Next thing I know I’m back on the IV, breathing gas and with an ECG attached to ensure my heart was behaving itself. I was having an adrenal crisis, caused by having too low cortisol. In a healthy person when they are run down their body produces more cortisol to help the immune system cope, but as all of mine is taken in pill form and my mind was elsewhere, my immune system didn’t get the help it needed with additional dosing. This led to a spiral of dehydration, making me more ill and raising my potassium – the same thing that forced me in to ICU back in February. This time was a lot more dignified with a lot less nudity and after one very long night of being treated I was fine. But days in the hospital are very long (note: a first world problem and quite insignificant in the grand scheme of things but they still haven’t changed the films available so I ended up watching Jason Bourne again - if anyone from HCA is reading this please take note) and gave me a lot of time to think. Although I knew the rough details I decided it would be best to know exactly what my situation was. Apart from a line of treatment offered by the NHS which I have read about called GemCap, which is usually used for pancreatic cancer and is not that effective on ACC, the options available are all deemed experimental.
In my head I already knew this was the case but being told it by a doctor makes it all seem a lot more real. Jason Bourne wasn’t quite as important anymore and I had a few hours of really contemplating what this meant before I left the hospital. After I had shed a few tears and taken out my frustration on one of the junior doctors who had come in to tell me I was fine to go home but ended up doing a great job counselling me along with my friend, I felt a bit more normal and went home. Somehow I ended the night in my lounge surrounded by people I love, laughing.
The next week my oncologist put me in touch with the clinical trial team and we discussed a Phase 1 trial I am eligible for. Phase 1 clinical trials are the first time the drugs are used on humans and the aim is to check how bad side effects are and discover the highest dose humans can tolerate. They and not often targeted to any particularly cancer types. As such, they tend to hit you very hard with a very low lack of success in even making it to Phase 2. The more I’ve read about them the less they appeal and if the only thing on offer is a non-targeted Phase 1 drug, I am currently leaning against it.
I’ve been told I’m brave a thousand times over the last few months and each and every time it felt undeserved. As most patients of any disease would say, you just do what you do to get better. But I do think that if I was to refuse treatment it would be the bravest decision I’ve ever made. It’s not like I don’t think I could go through treatment again, and there was at no point in the last year where it didn’t feel entirely worth it, even during the lowest, most painful moments. Also, it isn’t like I’m giving up on life. I rather like it, and after only a few days out of hospital I’m feeling good, physically and (so far) emotionally. I have energy and my hair is starting to return. I won’t count my chickens too soon as I remember what happened when I was diagnosed last year, with the first few halcyon days turning out to be some deep seated denial and then going through turmoil for a few weeks where I barely slept and felt constantly on the verge of having a panic attack. But, seeing as I am currently healthy - extracurricular hospital visits aside - it seems like a waste of precious time to put myself through something that has such a little chance of making any kind of difference.
I’m not ruling out further treatment at all and I am meeting other doctors and emailing some abroad to see if there is anything that appeals, including a more promising Phase 2 trial in Germany which I may be eligible for which would mean living in the middle of Bavaria. But I don’t think I want to sacrifice healthy days where I am able to really appreciate things in order to become the closest thing you can get as a human guinea pig. I completely understand and respect those that do, but to me it doesn’t seem like time well spent.
This isn’t to say that I have worked out the great meaning of life and know exactly what to do with whatever time I have left. It is a very weird feeling to know you have the potential to do a lot of things but perhaps a very limited time to do them. Any long-term plans years into the future are obviously out the window. It did save me time from creating a fantasy football team which seems like time wasted even compared to previous years where I would stop caring after a month. It feels in a weird way like being on a holiday, where you have to squeeze all the activities in before its time to go home, and wondering if you are doing the right thing and having the most fun without missing out on another opportunity. Put that on steroids (and steroids are absolutely necessary if you want to put yourself in my shoes) and that’s the situation I’m in. For example, when I’m reading I’m thinking “Is this a waste of time? Should I be reading this or something else? Should I be doing something else entirely? Am I having as much fun as I could be right now?” The answer is pretty much certain to be “no” so I guess I just have to make sure that I am doing whatever I’m doing at that exact moment is good enough without over thinking it. I think that’s going to be the main issue I have over the next few weeks, getting the idea out of my head of having to reach true acceptance and instead just living and enjoying the moment. It will be difficult to find my life’s true purpose when I don't have years ahead of me so instead maybe it’s best just to stop searching.
The idea of some hedonistic weekend bender doesn’t really appeal right now but I’ve always been active and when I can and I’m probably going to continue to be out and about doing things as much as possible. It’s helped by living in one of the best cities in the world surrounded by some of the best people. My love of travel will probably take me elsewhere occasionally as well, if insurance will let me. I’m sure there will be the odd evening watching Attenborough or the cricket and finding time to play the odd game of chess as well. (My God, that last sentence makes me seem like I’m actually an old man.) So, in short, pretty much carry on as I’m going with a few more novelties thrown in. I think that is a good sign that I’ve been living life the way I want to the whole time. Either that or I lack imagination…
 |
| A few days out of hospital... where are my teeth?! |
To be honest, none of this seems real yet, even after well over a year of being diagnosed and the various small and large bumps along the way. I am typing this out without much emotion and apart from that first couple of hours I haven’t felt any strong feelings of anything, just an underlying feeling of sadness and feeling a bit lost. I have plenty more hospital visits in the next couple of weeks to discuss things so I’m sure things will become clearer as time moves on.
For now, I have discussed with my consultants taking a bit of time off from any treatment (they have all agreed) and taking stock of the situation, getting back in to cancer life some time in October.
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