The purity of ambiguity and other lessons in life…

It’s been a while since I’ve posted. The reason for this is twofold. Firstly, events are unfurling much more slowly that the frenetic pace that marked time through my brain surgery and subsequent Radiotherapy. Because things are moving slower, there is simply less of interest to comment on. I could doggedly post updates on the treatment cycle. Beyond describing the process of taking tablets and their effects on me, I felt that updates would seem a little dull. Secondly though, the treatment itself has created a new schedule to my life. It has essentially halved the amount of time I have available to do anything. It’s been harder to sit down and write a blog entry due to this. In each 28 day cycle of Chemo, I take tablets for 5 days and then rest for 23 days. Then I start again. The 23 days is meant to give you some time to try and recover enough from the toxicity of the tablets to hopefully be strong enough to take the next set. The first couple of cycles were pretty grim. For the first one I tried to combine the anti-depressants I’d been recommended as trying as an additional anti-cancer agent and the combination absolutely floored me. I caught a chest infection and ended up in hospital and was in a state for a few weeks. I just about recovered again for the 2nd cycle. For the second cycle I was moved up to the full dose for the rest of the treatment and once again I caught an infection and ended up in hospital. The infection was actually a minor inconvenience (my immune system so far has withstood the treatment pretty well), but psychologically I really had a massive crash. My therapist described it as a ‘proper crisis’ and I think she was right. The Chemo makes you feel so rough, so devoid of energy and so sick that you can’t do much about from lay in bed. Whilst feeling so ill, it’s very hard not to focus inward and consider what is happening to you. Every strange sensation, every wave of nausea, it becomes a potential signal that the cancer is returning and that death may be on its way. The fatigue from the Chemo also triggers emergence of some pre-surgery symptoms (particularly speech problems) and this just adds to the paranoia that you’re health is declining. When I started feeling better after the 2nd cycle and began to come out of the hole of despair I had dug myself into, my wife and my counsellor helped me to pick apart the experience of the first two cycles. I needed to understand them better and put together a coping strategy to hopefully help during the remaining cycle. The conclusions where pretty obvious; the Chemo makes you feel really rubbish. It lasts about 1.5 - 2 weeks and then you’ll feel better. For 2 weeks you’ll feel pretty good and then the cycle starts again. When you’re feeling bad, it’s the Chemo rather than (necessarily) the cancer. All you can do is work through it. Armed with this new acceptance of the cycle, I managed my way through cycles 3 and 4 much better. I guess I mean that I ‘coped’ much better. I didn’t end up in hospital for either cycle. Mentally I stayed positive and allowed myself the time and space to be ‘ill’ through the Chemo. Afterward, I would re-emerge and enjoy the time I had whilst feeling reasonably OK. As well as the practicalities of coping through a Chemo cycle, part of getting into a good headspace to work with it has been a deeper understanding of the treatment itself and subsequently a corresponding lesson in life which has felt important. I’d like to try and share that perspective. The lesson started as this; it is entirely one thing to know something intellectually, it is entirely something different to understand that same thing through experience. I will try and explain. The illness that I have is described by the doctors that treat me as being ‘incurable’. They will not call it ‘terminal’, or at least not yet. That is because they don’t know when it will kill you, (although the assumption is that it will do). It’s the ‘incurable’ part that is important at this stage in my treatment though. Incurable means that the treatment you are being given is in no way intended or expected to in any way resolve or remove the disease. Its sole purpose instead is that it is intended to try and stem the cancer for as long as possible. To try to keep you alive rather than dead. Of course, before you start the treatment this is all (more or less) explained to you intellectually. As much as any person can take on this sort of information, I think I did so. It wasn’t until I started going through the treatment that I actually understood what that meant for me. It was a difficult and profound realisation to have. The Chemo works by giving you a very strong poison which has been designed to target cancer cells over normal cells. But it’s not exclusive unfortunately. Poison is still poison. The Chemo (hopefully - more on that in a minute) targets the cancer but causes collateral damage as well, so every cycle you take doesn’t just (again, hopefully) kill cancer, it also hurts you as well. Each cycle takes a toll (which you don’t fully recover from) and therefore each subsequent cycle takes a little bit more. Most crudely, you’re poisoning yourself enough to try and kill the cancer but hopefully not enough to kill yourself. Unfortunately the cancer itself is not so simple to kill through. One factor of success for the Chemo is your ability to continuing taking it. This is something finite, as ultimately there is only so much poison you can take. Another factor is how long the cancer will be effected by the drug. GBM is different from person to person, but in relation to Chemo it can be divided into two rough groups. Those types that will respond to Chemo and those types that will not. It’s about a 50/50 split on that for people with the disease. If you’re in the ‘cancer susceptible to Chemo’ group then theoretically the Chemo option may keep you alive for longer. If you’re in the ‘cancer not susceptible to Chemo’ group then the outlook is grim. Grimmer I should say. Unfortunately, even if your GBM is in the ‘susceptible to Chemo’ group, it does not stay as so. The cancer itself adapts and ultimately will not respond to the drugs. So - even if you were impervious to the Chemo and could take it indefinitely (no one is BTW), it wouldn’t do you any additional good ultimately. The current thinking is that there is no clinical benefit in taking the Chemo for longer than six months and if you’re still alive and disease progression free at the end of that then the treatment stops and you’re in the lap of the gods. Just as an extra tease, they don’t routinely test to see if you’re in the ‘susceptible to Chemo’ group or not, so you don’t know this information before the start the treatment. You could well be enduring it for no benefit at all. For me, as I worked through the first 4 of the 6 cycles I am to undertake, the slow process of fully understanding all this reality was bought about. Not through intellectual dissection of the information shared by the doctors, or by researching it on the internet. Instead, the logistics, the physical and emotional sensations, the low and the high of each cycle actually etched in me a deep ‘actual life’ understanding which was realised through experience. I’m not going to lie, it’s been a tough lesson to take on board and it is not without its sadness. Obviously I don’t want to die. I don’t take to have to take poison just to try and stay alive. I wish that I wasn’t losing 2 out of every 4 weeks. I wish a lot of things and don’t want a lot of things. But underneath all that though, there is a purer lesson / truth that has revealed itself to me about myself and my life. Pre brain cancer, I think that on some levels I had created an internal environment that saw the world as being based on absolutes. I was comfortable with (and chose to perceive the world as) the idea that life contains challenges that ultimately can be ‘solved’. Some were hard, some were easy. My previous reality was that the only real questions for every challenge was the time required and my desire to engage with it. But life is most certainly not like that in the end. There are challenges in life that cannot be ‘solved’ or have an absolute definition of ‘success’. There are things in life we can’t control. There are things we can attempt to mitigate and things beyond our means to affect. Acceptance of the ‘grey areas’ is the key to - well.. ‘acceptance’ I guess! When I got through my third Chemo cycle ‘successfully’ (in my mind), my son became very upset. He is going through a development stage in his life where he is beginning to understand the concept of ‘future states’ rather than just living in the moment as young children do. This emerging capability led to increasingly harder questions. He started to conceive of the idea that his Dad might die, and that might be soon. Talking to him, more significantly listening to him talk to my wife, was one of the most painful and difficult things I’ve ever been through. Hearing him explain to my wife his fears, knowing that those fears were valid, that they concerned me and that my illness was the source of the pain was a terrible thing to bear. So many different conflicting emotions. Additionally, my coping mechanism for getting through Chemo (and the rest of my life actually) was very much based on the idea of taking each day as it comes and not allowing myself to try and draw conclusions on the future. Suddenly my son was exploring these concepts and requiring me to go on that journey with him. On some level our needs at that time were in conflict. Of course as his father, I see my needs as immaterial to his, but how can you comfort your son about the very real possibility of your own death? Pretty complicated conflict of interest! But we worked through it. My wife acted as a sounding board for my son so he could ask the questions he could not ask in front of me. I backed her up and spoke to him also. The school providing (amazing actually) support and the charity ‘Daisy’s Dream’ set-up session as back-up. So, (of those of you not yet asleep! I’m sorry, this is a very long post), the final realisation I had was that even for those situations at exist that have no solution, there is something that you can perceive as ‘success’. That same ‘success’ that I expected at the end of all the obstacles I tackled before I had cancer. Success means ‘getting through it’, and sometimes that is as good as it’s ever going to get. And it’s OK to celebrate ‘getting through it’. This Christmas I feel like me, my family and my friends, well - we are very righteously entitled to a very large celebration for a large amount of ‘getting through it’! Getting through it feels pretty good today. To anyone still reading - a very Merry Christmas to you. Go here to the start of the journey. Go here to view previous blog entry. Go here to view next blog entry.