The Rime of the Ancient Mariner…
“Her lips were red, her looks were free,
Her locks were yellow as gold:
Her skin was as white as leprosy,
The Nightmare Life-in-Death was she,
Who thicks man’s blood with cold.” - Samuel Taylor Coleridge (written 1797–98)
It’s been a long time since I posted anything on this blog. There are a couple of reasons for this. Firstly, I’ve been going through some very difficult personal stuff which has somewhat eclipsed the journey I’m on with my cancer. That’s not something I will talk about. More relevant to the blog though was that the last post I made, well, it made me feel uncomfortable. I will try and explain. When I first started posting, I had two main reasons to do so. Firstly, I wanted to try and improve a big deficit in my ability to communicate. In particular through writing. This had come about through the brain damage from the tumour, and the subsequent surgery to remove it. Secondly, I hoped that the blog would provide a ‘story’ which my kids might pick up when they are older. I hoped that would mean something to them, in particular if I was to die whilst they were still young. I didn’t have any expectation from writing the blog, but the response I received in writing it was truly extraordinary. I found myself on the receiving end of a lot of love and support. As the blog developed, a dialogue started with friends and strangers that was humbling and inspiring. I found that in addition to the goals I had set myself initially, each post was bringing me personal comfort. They were also cathartic. Each post was helping me to sort through my feelings, articulate them and let go. By the time I completed my last post though, my newly found ability to articulate my situation back fired on me. I realised that I was starting to express an aspect of the experience which I can only define now as ‘futility’. Obviously, having any incurable disease is pretty shit. I can only talk about my own experience with brain cancer. The symptoms of brain cancer are the same as the symptoms of the treatment of brain cancer. Oh, and lots of other things can give you the same symptoms of brain cancer once you’ve got it. Like a cold for instance. When I get a cold now, it comes with neurological symptoms which mimic the cancer symptoms. Also when I’m tired, under stress or upset. Or excited. Or sometimes for no apparent reason at all! There is also the fact that the cancer could be re-growing in your brain, without causing any symptoms at all. So it is impossible to be certain at any point whether you are ‘OK’ or not. Even after a MRI, it takes about 2 weeks to get the results. If the results are good (more on that later) then that’s great, but 2 weeks is enough time for the cancer to start coming back. So a good result from 2 weeks ago doesn’t guarantee you’re cancer free right now. The conclusion to all this is a life of uncertainty that can never be made certain, not even for a short time. Living with the reality that the cancer could return at any moment and there is nothing you can do to control that is very hard. I spend my time craving life and simultaneously fearing death (or at least the process of dying). The doctors looking after me can’t offer any reassurance either. Their view is ‘it will come back’. It’s just a matter of when. Anyway – you get the point! I felt that I was starting to repeat in my posts the reality of this part of my life. Ramming it home, post after post (to myself more than anything) was beginning to feel like self-harm. As well as making myself feel bad, I also felt as though restating this reality (which obviously isn’t going anywhere) over and over, it would quickly become self-indulgent and frankly pretty boring. So I stopped for a while to think about it. Stuff happened and it’s taken me this long to think what I might say differently. So what’s happened since the last post that’s worth sharing? The first thing is that I have had 3 completely clear MRI scans. No sign of disease progression. I don’t have the words to express how I feel about that, but obviously it’s amazing. The time I’ve had ‘cancer free’ has been challenging, vital, precious and beautiful. It’s not like everything is normal and I’ve recovered my full ‘capability’ (whatever I thought that was!). I still don’t feel too brilliant a lot of the time as it takes years to recover from the treatment I’ve received. The brain damage I’ve experienced will never go away. It doesn’t matter though – any neurological symptoms I may have are no price at all compared with the time I’ve had with my wife and kids. Being alive is a privilege, a gift. A clear scan doesn’t mean the next one will be clear, but a clear scan is all you want to hear in the tough build up to the results. I’ve been very lucky so far. The next thing that happened is I went back to work. It’s only one day a week (maybe two soon) so it’s nothing like a normal job, and absolutely nothing at all like my old experience of a working life. But do you know what? It’s absolutely brilliant to be back. The support I’ve had has been immense. The kindness and care from the people I work with is a testament to the best in humanity. My contribution feels so pitiful in comparison to the herculean efforts of my colleagues, but I feel not an ounce of judgement or resentment – only compassion, inclusion and support. It feels like a happier place than the one I left when I became ill as well. My boss joked it was because everyone had enjoyed a year without me banging on the whole time, but I think at least in part in is a projection of my own inner state. I no longer carry ambition and enjoy the experience for what it is rather than what I hope to gain (again, whatever I thought that was!). That perspective is the greatest learning I’ve taken about the reality of life. Enjoy, and live in; the moment. I finished and released my album, which was hugely gratifying. I’m ridiculously proud of it and it got a great reception, far better than I expected. I’ve sold some copies and it’s had literally thousands of plays online. I’m planning to do some live performances later in the year if I can. Something else very significant in my life has been a journey I’ve been on to take ownership of my own treatment for my cancer. The completion of the 6 months of Chemotherapy after my radiotherapy spelled the end of the ‘standard of care’ that is officially available to patients with brain cancer in this country. What that means is that my doctors have thrown everything they’ve got in their arsenal at the cancer. There is literally nothing more they can or will do until the cancer reoccurs. Once you’ve reached that point, you only have three options on what you might do. The first is to do nothing and just get on with your life. The expectation is that you will have some time, the cancer will come back (when it does, it’s MUCH worse than before), they will try and hold it back for a while and then you will die. The second option is to get onto a clinical trial and try and new treatment. In reality, this is very hard. Most trials are only available to patients where the cancer has already come back. Even then only a tiny percentage of patients will get access to a trial. I’ve tried to get onto trials but so far no luck. That is in its own right a separate story – suffice to say I’ve REALLY tried. The third option is to try an emerging concept which is called ‘combination therapy’. The idea was conceived by an American called Ben Williams. He discovered at 50 years old that he had GBM and refused to accept that the disease meant certain death. He wasn’t a doctor, but was an academic so he started researching the disease. Basically, he started taking as many drugs as he possibly could that might have some sort of impact on GBM cancer. He was taking all sorts – antibiotics, supplements, acne drugs, mushroom tablets – you name it, he was taking it. All this on top of the standard of care of the time. The tumour initially grew but then remarkably shrunk and then disappeared. 20 years later and he is still alive. He is a huge figure in the brain tumour community and to this day tries to help people to embark on the same journey to attempt to battle the disease. He doesn’t claim it works – he just says it ‘might’ work. After finding out about all this, I decided I had nothing to lose if I gave it a go and I certainly preferred the idea of trying something rather than nothing. So I started to research potential anti-cancer agents and with support from my GP and oncologist started taking more and more supplements and drugs. I’m up to about 35 tablets a day now. Taking that many tablets a day is hard work and in itself comes with side effects (yes, again, some of these side effects mimic the symptoms of the cancer – yea!), but even if all these tablets are doing nothing for me at all, they provide a sense of empowerment. Trying to do something has done me a huge amount of emotional well-being. My oncologist has been really supportive but I’m pretty sure she’s doing it as she sees the need in me to act, rather than any personal belief that it will work. It’s too early to make any judgement as to any benefit, but if I’m still alive in a year I might start believing that something is happening. Whilst this has been going on, something related and quite profound has started happening though. Other patients who have discovered the concept of combination therapy and want to try it are making contact with me to share information and experiences. When you find someone going through the same experience with the same illness, there is an instant bond that is hard to explain. I’ve found trying to help others, no matter how modest and slight my efforts are to be hugely rewarding. I’ve ‘met’ (mostly by email) some lovely people. Some of them are still in contact and working through their life as I am. But some have died as well. The first time that happened it was a strange, sobering experience. In the end it rammed home the reality of my situation. It reminded me how lucky I am to be alive, no matter no long or short that may go on. If by chance you are reading this and want to know anything about my experiences with this, then I’m no expert. In many respects I’m just floundering around in the dark, but you can PM me at firstname.lastname@example.org and I’ll happily share the tiny amount of insight that I’ve gained. I’ve also spent a LOT of time with my wife and kids, they continue to enrich my life in ways that I could have never imagined. My kids are growing up so fast and I can already see they will surpass me in every respect. It’s all a father could wish for in their children. It’s been the best of times, it’s been the worst of times, but I’m just so grateful to be alive. So - in closing this particular post, I wanted to acknowledge the deaths of all the victims of GBM. I may well become one of them myself. It’s why I started with the excerpt from ‘The Rime of the Ancient Mariner’. It’s poem that captured my imagination when I was a child. In the poem, the Mariner is won in a game of dice between Death and ‘she’ who represents ‘life in death’. The Mariner is then forced to watch his entire crew drop dead whilst he alone is left alive – his only purpose to then tell the tale of his experience to others to warn against a similar fate. I wonder if Ben Williams and the other few long term survivors of GBM feel a bit like the Mariner? A simple roll of the dice means they must endure whilst all around them die one by one. It must be a lonely existence and a difficult one to rationalise. Still; I’d rather be the mariner than a crew member any day of the week. Go here to the start of the journey. Go here to view the next blog entry. Go here to view previous blog entry.