Cycle 4, Day 15

My mood has been slightly lower the last few weeks, particularly since just before the start of the fourth cycle. I was really dreading it but as I said in the previous post, it went smoother than I thought it would. Fatigue is a real issue now though and I’m constantly tired, even feeling a bit nauseous because of how tired I am. Even when I do all the right things – eating little and often, sleeping a bit earlier, getting out the house every day – I just feel constantly drained. I’ve been very good with my routine but it’s still got to my mood and getting through this second week has been a real struggle. This culminated in a bit of a bit of a breakdown earlier in the week, the first time I’ve properly cried in a while. I think it was just a combination of feeling really rubbish, and thinking of the fact that 6 months ago pre-diagnosis I was living the normal life of someone in their 20's, planning my summer and enjoying myself, to the position I’m in now, and the realisation that this isn’t going away any time soon. I’m not sure if I have said in previous posts or just to my friends that I thought that crying would be beneficial as it would act as a release. This turned out not to be the case and I didn’t really feel better afterwards. Because I’ve not a crier I’m not used to the feeling the next day of feeling emotionally drained, which wasn’t pleasant. I’ve been up and down since, with good days and bad days - it’s very correlated with fatigue. To be frank, I am pretty fed up with having cancer now, and want my old life back. I miss not being tired all the time. I miss not being able to plan more than a month ahead. I miss the intellectual stimulation I got from my job and the social environment around it. I miss being able to do real exercise, being able to drink without the risk of it making me feel awful, having hair, not feeling like ‘the guy with cancer’ when I'm with people, relying on my sister for help and then feeling like I’m acting ungrateful for her support, and a thousand other things besides.

I had the scan yesterday. It all went smoothly, and I get the results Wednesday. I’m now faced with a bit of a psychological dilemma. Whereas I went into the last scan results expecting the worst and thinking that it was unlikely that the chemo hadn’t worked (as the stats were hugely against it) everything went pretty much went as well as it could go. This time, hearing anything other than that the chemotherapy has worked perfectly and I’m due (very high risk) surgery would be a bit of a blow. The more likely scenario of hearing that the chemo has continued to work but they want to do more rounds will leave me feeling deflated. As well as I’ve tolerated it, chemo really is rubbish and the prospect of another two rounds, even if it leads to a better position for surgery, just doesn’t appeal at all. I would be able to get my head around it though as I know it’s progress. The other scenario - hearing that the chemo has stopped working - I’m no longer mentally prepared for at all and would be pretty devastating news.

It’s all about a shift in my expectations and how they have risen. When I was first diagnosed in early summer it was pretty much the worst news you could hear – that I might only have six months to live – and I adjusted to this with the thought that anything else is a bonus. I spent a lot of time back then thinking about mortality and getting my head around death, which was hard work and very draining. It definitely has been a bonus that treatment is working. Dying six months from diagnosis now seems very unlikely, and I am full of hope that it will be a lot longer. I no longer spend my time with thoughts of mortality (helped by the fact I am actually getting treatment, and the antidepressants that help me focus and raise my mood a bit), but it comes at risk of bad news hitting me harder. Although statistically it is now likely that there will be some positive results from the scan (i.e. still responding to chemo) there is still a substantial risk that this won’t be the case. I need to find a way of going into the meeting on Wednesday expecting a lot less than I currently am, but I don’t know how to do that.

Unfortunately, last week I ended my sessions with Jennifer, my amazing therapist at Maggie’s Cancer Centre. I started sessions with her by chance (someone else cancelled so I was given a one off) and I think she kept me on because our first session I was having a bad day and she decided I was in need of help. I’m a big believer in therapy but it’s obviously dependent on who you get and how you connect. She is a lovely person and we got on great, but the reason I liked her so much is that she challenged me and my thoughts. I’m not going to compare myself to the genius of Matt Damon’s character in Good Will Hunting … but it was exactly like that. In all seriousness though, she felt like the Robin Williams counterpart that I needed at that point. It came at a time I was very low, faced a lot of uncertainty and things to think about and she helped me with the decisions and gave me tools to deal with them, as well as helping me rationalise my own thoughts. I’m continuing with therapy which I’m sure will be useful, but will always be grateful that I had her help when I did and wish her all the best in the future. If you read this Jennifer, thank you.

I realise that this has been a pretty downbeat blog post so will end with some positives, so people don’t think I’m chronically depressed. I am actually feeling pretty good overall. I enjoy having people around all the time. As I said, the week in hospital went well. My friends Alys and Tom came up for one of the days and it was great seeing them. They couldn’t believe the quality of service compared to what I’d get in the NHS which was a timely reminder of how lucky I am to have private health insurance and the great care I’m receiving. Fatigue improves steadily over the weeks so I took the opportunity to visit my friends Tom and Gen in Switzerland on the weekend at the end of the last cycle. The activities were obviously a bit limited but it was great to see them as I don’t get to much these days (as they live in Zurich!) and we got out on one of the days into the beautiful Swiss countryside. They are expecting in late December, and we learnt that going through chemo is very similar to being 25 weeks pregnant – a need for a lot of naps that might hit suddenly, taste changes, exhaustion. She doesn’t get the hair loss though. I guess that would be a weird side effect of pregnancy. Tom was basically a carer for two adults for the weekend, which I think was good practise for him being a father of one child when it arrives. Regarding the rest of my time, I’ve been out in London when I’ve felt up to it, including visiting an organic festival one Saturday which was good fun, and I went to a stereotypically London wanky and overpriced (but good!) film showing in an underground cave which showed a few films about explorers doing cool things. I have amazing friends willing to come to Canada Water and keep me company as well. I was reading a fair bit the last few months when I’ve had the energy to give my mind a bit of a workout as I’m currently not able to get it from Barclays, but I’ve also rediscovered chess. When I was a lot younger, and cooler, I used to play competitively and was quite successful. It’s slightly humbling to find now that as a 29-year-old I’m worse than the 10 year old version of me. I’m putting it down to the chemo. As a final positive – its week 3! So hopefully a bit less fatigue now.

I also have been to a session with a charity called Look Good, Feel Better. It’s aimed at people with cancer to help them deal with the aesthetic changes, and they have asked if I want to be an ambassador as they are branching out more to men. But, as I’ve learnt from Dan Brown and numerous terrible American dramas, its good to leave things on a cliff-hanger, so that’s for another post. I will post the scan result tomorrow when I get it. In the meantime, I hope you are enjoying the last of the summer. 

Flumserberg, Switzerland