Week 5 & 6: Looks like I picked the wrong week(s) to give up sniffing glue…

To those still following my blog - thank you. I started the blog 5 weeks behind reality and this post marks the point where I’ve caught up with myself. I am now finally writing in real time. Do me a favour - press the ‘kudos’ button on this entry as I’m interested as to how people have made it this far. I can’t tell who you are if you’re worried. Whilst I’ve been writing my entries on the radiotherapy, I’ve been wondering if it’s worth trying to share a description of the actual procedure itself. You know, to give context to the 30 separate times I’ve been in to have it completed. It’s actually easy to describe in physical terms. You go in and lie down on a metal tray. They put a little moulded piece of red foam under your legs to make it more ‘comfortable’. Then you have your head screwed onto the tray via a very tight plastic mask. You wait until the machine spins round you and makes noises and then you leave. However, the experience is much more an emotional one rather a series of routine tasks. Each one is subtly different dependent on your state of mind at the time, the manner of the radiographer treating you and how you’re physically feeling. In the end, I concluded that the only thing that is consistent is that it is a tolerable but mildly unpleasant experience. There is not much more to it than that. In terms of how unpleasant, I came up with a sophisticated analogy which I’m quite proud of. It’s about as unpleasant has having a doctor put their finger up your bum (for a legitimate reason!) every week day for six weeks. It certainly gets wearing the more you have to do it. Close to the end of the 5th week, I was starting to feel a bit bullish. Dr. D and Nurse. L were both complimenting me on how well I’d tolerated the treatment compared to most, and even the radiographers were saying that I might be one of the lucky ones who gets through the treatment reasonably easily. I was remembering how much I dreaded the treatment and secretly thinking I might have pulled off the coup of the century. With only 7 more sessions left I was starting to think about life beyond the treatment and my wife and I started talking about going on holiday. It my head I thought, ‘coast through this last 7 and it is over. Happy days.’ But 7 days in a radiotherapy machine can be a long time. By the beginning of the 6th week I was really starting to feel very tired and a new, constant underlying feeling of sickness was sitting in the pit of my stomach. I kept forgetting things - that was the worst part. Forgetting things I had literally just done. I started to mistrust my own memory. I had to start writing down what tablets I had taken and when as the alarms on my phone would go off and then minutes later I couldn’t remember if I had taken anything or not. Sometime I seemed to just ‘slow down’, and walking the length of the kitchen became an incredible effort. My wife had scheduled a few trips away with the kids towards the end of the treatment so that they could have some fun times and I would have the space to rest seeing the last section which was expected to be tough - I pretty much spend most of the last week in bed apart from to eat. However, as I finished the treatment and completed my end of radiotherapy review, Dr. D was pleased with my overall state saying that everything I was experiencing was normal, and relative to many I had come through amazingly well. Of course she couldn’t leave it at that - she was keen to stress that some people have serious side effects after the treatment and so there was no guarantees that I might have more pain to come. I would just have to live through to and see what happens. She reckoned that if I was still OK in six weeks, I could consider myself through the recovery reasonably intact. No cigars until then though. With the last session done, I had a month off with no further treatment to recover before starting another six months of chemo. I had been gagging for the treatment to end, particularly in the last week, but the last session left me cold rather than elated. It’s a common response by all accounts. With the treatment over, another one of the very few options to combat the disease was spent, and you couldn’t help but think of the uncertainty of the future. Although in some ways the experiences since the first seizure felt like a lifetime, I had only been ill for 3.5 months. It was still early days and I was nowhere near the average survival time yet. The truth was pretty much anyone with this condition would still be alive at this point so it was way too early to start trying to assess how it is going, regardless of whether the treatment was well tolerated or not. On one level this realisation was sobering stuff; the truth was that I could just as likely be already in the process of dying within the next six months as not. On the other hand though, I realised that it was unlikely (not impossible granted, but unlikely) that I would be dead within the next 3 months. I started to realise that I needed to once against reset my expectations to a very near term perspective in order to hold on to the life I do have now. No point in thinking about where I might be in a year, it’s how I feel today that means something. And as of right this moment, two days after the radiotherapy was finished, (right now as I write this in fact), I feel pretty good. It’s great to have the radiotherapy behind me. I actually did some stuff in the garden yesterday. Not much, but it was something. Something that wasn’t going to the hospital or taking tablets and it made me feel alive. Today I am still alive, and it is an amazing feeling. I’ve got a beautiful wife and two kids that are such great fun. A comfortable home, loving family and friends around me. I finally finished my album. The company I work for could not have been more supportive in helping my family through this difficult time. I’m very grateful for this day. Whilst I’m not expecting, I’m certainly hoping for some more. Go here to the start of the journey. Go here to view the next blog entry. Go here to view previous blog entry.