There is no easy way to say what I am about to say, to deliver news of this nature, but I shall do so in the clearest way I am able to at this time.
After completing chemo for my brain tumour, I had some unexpected scan results at my follow-up appointment. The tumour, in a very short period of time, has grown completely out of control. This was a complete shock after some earlier positive scan results. At this last appointment I could tell by the way the doctors entered the room that it wasn’t good news. They said there was very little that they could do, and it was then a matter of preparing me for the inevitable.
They did give me one final option to try a different type of chemo which was, in their words, “very unlikely to work” and what was far more likely to happen was that it would make me feel horrific and make my final days very uncomfortable. Having had chemo and knowing the side effects of it (which in my case, kind of changed me as a person because I just felt so unwell), I was able to push the doctors and ask them to be completely honest with me about proceeding with chemo. They suggested not doing it because it would make my remaining time just totally unpleasant. From that moment the decision was made to basically stop treatment.
This was obviously a big decision, but one that I felt very clear about - that it was the right decision to make. My following question was about life expectancy and they gave me anywhere from weeks to months. Obviously they can’t be too specific, but given the rate of deterioration, the time frame is not looking good.
So that is the situation I am currently in. Delivering this news in any form is horrendous, but I wanted to do it in the clearest way I could. If I had gone ahead with the chemo and everything that goes alongside it, I would not have had any clarity in my head or even remotely felt like myself to communicate clearly.
Some of you may already know about this but I appreciate for some of you this will be new. I wanted to provide a comprehensive update for everyone, and to do it through Facebook because - it seems bizarre - but Facebook has been an extremely valuable tool for me in order to deliver news. Delivering updates via the written word is something I have enjoyed. ‘Enjoyed’ is probably not the right word, but I have found it helpful because I like writing; I am much better at it, I think, than talking, so I was very keen to write something which captured the reality of the situation written in my own way. Saying that, I am actually recording this for someone else to type up as my vision is ‘shot to shit’, as they like to say.
As well as Facebook being a helpful way for me to communicate (I mean it’s never not going to feel weird addressing the ether but I feel like it’s been very personal writing these updates - very personal indeed), I’ve also really appreciated all of the kind things people have said in response to posts that I’ve written.
I know that this will not be in any way enjoyable for people to read, but at the same time I felt it was important, at the right time, to post something that could be circulated and read more widely.
I also want to thank people for giving me the outlet of being able to write as things have developed with my health. I believe it has helped me to articulate things in my own way. I’ve been able to write very honestly, but also people have kindly said at points that it’s been kind of verging on the humorous. I haven’t tried to include humour because it will increase my readership or out of a need to help me deal with the situation; how I write is all tied up in how I have experienced this whole journey of illness. I’ve felt able to use humour because that has been my genuine experience every step of the way. And I think what lies behind that is the fact that through all this (and I am being as honest as I am able to be) humour and anything else that has been used, the language that has been used, is real. (Although someone may be able to study me and tell me differently.)
Throughout this whole process, and I can say this with complete honesty, I have had deep peace. A really deep peace. Not a peace that I could generate because that would be a lot of work and I could not do that, particularly at this time; I don’t have the energy reserves. But I can say with all the honesty I can muster, that it is real. I truly feel at peace with my situation. And I have done for a long time. There has been no sense of fear about it, no sense of being scared. I have felt just totally at peace with the place I am in. And by that I mean the inevitability of what is likely to happen. You know that I am not going to be... I am not going to live (tear emoji) - barring a miracle, which I fully believe is possible. But if things follow the normal order, given just how significant the tumour is (it’s grade four which is the worst, and it is spreading like wildfire), and with the decision to discontinue treatment, that does mean that my life expectancy is very short and these are the last times for me before I go to heaven.
And it is - I can appreciate that this is - a shocking thing to hear, and it’s a very difficult thing to hear, because death is bad. It’s - to use modern parlance - fucking awful. And there should be no dressing up of that. There really shouldn’t. We shouldn’t try to minimise it, dumb down the reality of it or the pure badness of it. It is bad. Death is very, very bad.
But I can speak with complete honesty to say that I am at complete peace throughout this all. I really, really am. And I don’t feel like I’m floating in some surreal space feeling this peace in the sense that it’s like an out-of-body experience or anything like that. I mean it in the deepest, realest sense, that I feel totally myself.
I’m still doing things. I’m still doing things like thinking about puns, whether they’re of a high or low quality. My mind is continuing to do normal things. And that’s not out of necessity, but it’s because I believe with all my heart that this is not the end.
And I say that not with a defiance in any way, but with a confidence. A real, deep-rooted confidence that I know that this is bad, but I will be continuing. This is not the end. I have eternity to look forward to - and I totally appreciate that to many that will sound like madness and me kind of doing and saying things to help deal with the reality of the shite-ness of the situation. But I don’t believe that it is.
I have such a confidence, which started a long, long time ago. Although I still experienced struggles in terms of (and this is going back to my teens) self-confidence, with striving to work out what life is all about, what truth is. Basically the big stuff of life.
There has been this deep-seated drive within me, alongside a deep sense of feeling uncomfortable with life, with myself. And just making sense of what life is. Life can be so beautiful, though I must speak with complete honesty and say, I have not enjoyed life. Obviously, I have had small glimpses of joy but on the whole, life has been hard. That is going to sound really bleak and depressing but that is just the reality of how it has been. I have suffered from very bad depression, and life has not been fun. I am sure there are lots of people who can identify with that. And it is nice to not have to dress it up. But life is, most of the time, quite shit. And that’s my experience.
I know many people are different to me and they have experienced joy and peace and I am delighted that we all have different journeys, but that was mine. So I can identify far more with people who feel uncomfortable in themselves, just in life, in all of the insecurities, in all of the massive questions they have and feeling socially awkward and all of those things in such abundance. And I think (I don’t know if this is an encouragement or just stating how I’ve felt) in not covering those things up - something I definitely did - I’ve found a real sense of freedom; in recognising that the bad stuff is bad, and that those feelings of not being comfortable in your own skin, and in things not being neat or not making sense, has certainly been the natural order of things for me.
And the way I dealt with that was to keep striving, to find out what was true. And my big struggle was that I believed that there was something which both made sense, and in some way, answered our questions about life and brought us peace. Peace is one thing I have always struggled with. To be at peace with everything; to be at peace with myself and the big questions of life. It is honestly something I never had. So, again I don’t know if that can be called an encouragement - but if that is you, then, in the words of Michael Jackson, you are not alone, you are not alone in your struggle.
In my experience, I was more myself when I was with other people and able to externalise that discomfort of living by talking to them, and I guess by just being open in those struggles. It may seem like this is not what people want to hear; they don’t want to hear how hard things are for you - why would they? It can sound like you’re just complaining. I think it’s important to not just focus on all your struggles, but to find people that you can talk about them with. But find people who will not just listen to you, but also be able to encourage you as well - so it is not just a one-way stream of you saying how hard things are. Because having particular people around you who are able to challenge you towards more positive ways of thinking is absolutely vital. So I would encourage you to seek those people out. And I have been extremely fortunate to have those people in my life at the right time.
So yeah, I hope that in itself is of some comfort and some help to keep seeking, to keep asking questions, to toiling - that’s the word that I would use for what I’ve been doing. But with the aim of seeking the good, and that is not (for people like myself who have suffered from horrible depression) the way the mind naturally goes.
This isn’t the time for a discussion about medication, etc. but I was helped beyond measure by taking antidepressants, a tiny, tiny dose of which I am still on. This tiny dose transformed everything in life from being just completely negative to being - not positive - but normal. They don’t make me hyper. They haven’t stopped me feeling. I was able to feel sad when I should feel sad, and not feel sad when I shouldn’t. That was the impact it had on me. (And please don’t take my medical advice as this being a licence to take antidepressants. I’m just telling you what my experience was.)
On top of the depression was my diagnosis of epilepsy. Epilepsy is a shit (as those who have it know). I can only talk of my specific experience, but of everything that has happened, the epilepsy has been the hardest, without doubt. With the depression, the small dose of antidepressants really turned things around, but when the epilepsy started that was when the real hard times kicked in because it is terrifying. Having seizures - like those who have experienced it will know - is just awful. I can say with clarity that, aside from the darkest days of depression, the epilepsy has been the worst thing I’ve experienced.
Epilepsy is the one thing that I never, never, never want to experience again. (It sounds strange to say, but the cancer, etc. compared to the epilepsy has been a much easier ride). The kind of psychological effects of knowing that you might have a seizure and the unknown of all that, it really is horrific. So my heart and my prayers and my love go out to anyone who suffers from it and to those who know people who suffer from it.
But through everything, the big take-home lesson for me has been that I believe God has been at work. And I know that kind of language is unhelpful for a lot of people and doesn’t make sense. But all I can do now is be completely honest; I do believe that I have been given this sense of peace that doesn't make sense. It doesn’t make sense to have no fear, to have no anger. I do not have any of that. I just do not. And to me that has to be something that has been given to me. It is not something I could generate myself.
And I imagine people who have read my other Facebook updates will think ‘oh yeah, I knew this bit would be coming...the Christian part’. But I believe in Jesus. That is not something I use to anchor me, it’s something that just is.
Christians talk about things which, when you think about for any length of time, sound nuts, they really do sound nuts. But I believe in Jesus. I believe that He lived. I believe that He died. I believe that He came back to life. And if you just think about any of those things for any amount of time they can sound just utterly ridiculous. That’s not normal. Those things that I’ve said are not normal things to say. I firmly believe that if you looked into it you would find that Jesus is rooted in historical fact. There is evidence - actual good proof - for Him being a man that said and did certain things. And I would say that proof is far more compelling than the evidence He didn’t.
I believe that His words can be examined and looked at in a critical, historical way. I believe that this isn’t just nice words and nice feelings. But it is something concrete.
Now obviously there are so many questions within all that. (But there are for everything, when you look at anything.) I wish I was more well read, but there are obviously so many theories for life and there are even theories for the possibility that we’re not even actually here. I am not saying that there is absolutely zero percent chance that what I am saying could be false because we can’t prove anything to be 100%. But we can say beyond reasonable doubt that certain things are likely to be more true than others. And I do believe that the life of Jesus and what He said and what He did is one of those things; where the evidence is more compelling that it is true than that it isn’t. And that is a big reason that I believe it to be true.
That is obviously the main thing, but for me it is backed up by my experience. My experience of there being beauty, creativity and humour. With all of these things I just feel so uncomfortable with the option that there isn’t a source which is bigger than myself, than us as people. I believe that there is a God who is the source of life - the life giver. And to me that makes a lot more sense than there not being anything. When I look at life as a whole, that, from my life experience, is the best explanation for it. And Christianity is the best explanation for all of life for all people. That is an incredibly controversial thing to say and I’m well aware of it, but that is what I believe.
I believe that Christianity's claims can be taken seriously. It is not for me to convert you. But I feel it is my duty at this point to just lay out my stall and encourage you not to discount it. As I said before, I’m not telling you to believe. But if this somehow helps you ask the question... ’could that be true?’, then that’s amazing. That would bring me joy.
I wanted to use this opportunity to express my experience of what is going on at the moment and to somehow get across the lack of fear and the abundance of peace that I am feeling which I believe has been given to me.
I do not believe this is the end. I am genuinely, when I think about it, excited about what comes next. I believe in heaven as a very real (I was going to say real reality but that’s not a very good or classic phrase) place. And I do believe that I don’t need to be afraid. I really do not need to be afraid. It is actually quite exciting to think about how amazing paradise will be. I love that word, ‘paradise’. I hate the Coldplay song that has the same name but I love the concept of paradise, of things being made new and just so good - so good and so exciting. Not in a kind of floaty, airy way. The stuff that we experience now that is good, but tarnished, will just be good. I can’t wait to snowboard in heaven. I just can not wait. There are so many things that I can’t wait to do. I almost feel selfish that I have that sense of peace God’s given to me which enables me to think in this way. And that’s not something I’ve ever had until the last month or so, and it really is something I am just overwhelmed with thanks for.
I pray that I have been able to share this sense of the truth that has been planted in me. I hope you can feel the combination of both peace and excitement I feel.
The End. Amen.
My brother Ollie has written a song about my battle with epilepsy (which, amongst other things you can read about below) called “Brainwave”. Please stream, download and share as much as is humanly possible from Spotify, iTunes and Amazon. All the profits from the song are going to my four chosen charities. Here is the video I shot (apart from the bit at 2:33, that's me, that is) and edited for the song:
Well, this is awkward
A couple months ago I was diagnosed with terminal cancer and, barring a miracle, I'm not going to live for much longer.
There are many bad things about this situation but one massive plus is that I get to call on all the wonderful people around me and ask them to raise a shed load of cash for charities that are dear to my heart.
Please give generously to all or one of the great charities listed below. That would make me happy.