Cycle 3, Day 13

The idea of regular updates hasn’t really happened. This is due to a combination of being very busy, laziness, and feeling really shit at the start of this cycle. Time flies when you’re having fun. I received the good scan result on the Wednesday and had a very busy day seeing different friends for food and drinks, and then deciding to make the most of feeling well by booking a last minute weekend trip up to Edinburgh for the Fringe. I’ve never been to the Fringe and had no plans for the weekend so figured I’d make the most of feeling well. Edinburgh was as beautiful, and as cold as ever. I think I had the quintessential Fringe experience of mostly shit comedy (Tape Face, probably the act with the biggest billing for the festival, was so bad I actually walked out after 20 minutes and decided it would be a better use of my time sitting by myself drinking a G&T in the rain), with a few good finds (checkout Luke McQueen). I also saw some wanky modern dance performance that was pretty good and my first orchestra experience which was also good, if a little over my head. The atmosphere was great throughout which meant even with the shit comedy, the festival was well worth it. Shout out to Bronte for hosting me, and to Jack and his mates for letting me tag a long for a lot of the shows.

Culture

I got back on the Sunday, had a few appointments on the Monday and then headed to Cardiff. It’s the first time I’ve been back since January and was great to catch up with friends and family, and I had another busy few days. I got back to London on the Thursday evening, had a few drinks on my rooftop in the evening with a group of mates and then headed out to an Airbnb north of London for a with some old workmates. This was mostly spent going for country(-ish) walks and discussing politics in a hot tub, playing drinking games and having a laugh. Its been a great 2 weeks and pretty non stop.

Lads Lads Lads

For the final 2 weeks of the cycle I felt generally pretty good, with fatigue being the only real symptom. As people keep reminding me, and I keep reminding myself, I've had a full on period for anyone at the ripe old age of 29. In Edinburgh I was going to five one-hour shows in one day, drinking throughout, and being in a pub at 2am with the option of continuing the night. By this point I was shattered and thinking I was ready to go home, and thinking to myself ‘this is cancer/chemo, exhausting me’. But then I figure that’s actually an acceptable time to call it a day and its only maybe as a 21 year old I’d be thinking that the night was still young. In Cardiff, we did a walk in the mountains which I handled just fine. I think these are all signs that, although I’m more fatigued than I would normally be, after 2 cycles of what was described as a really gruelling chemo regime, I’m handling things pretty well.

I went pretty much from the Airbnb in to Cycle 3 of chemo. It went smoothly but I felt pretty low during the week. I think this is partly expected after a really fun 2 weeks - a sort of post holiday blues. But it is also because of the change in the situation. The best way of describing receiving the news that the chemo is working is to when you are waiting for exam results. You are really nervous, the results come in and you’ve passed, and everyone is expecting that you are delighted, but instead all you feel is exhaustion and a kind of numbness. It postponed the feeling of having to make a decision on anything which is brilliant but made the situation feel more perpetual in nature. I saw the 2 months of chemo as a set amount of time and that has come to an end. It is now going to be at least 4 months. Each month gets worse. Then I have either more chemo, or surgery with the pain and recovery that brings (and then probably more chemo). Alternatively, it all stops workings, and I have to face my mortality. In any case, it all brought home the fact that this wasn’t ending any time soon and cancer is going to be a continuation of my life for the foreseeable future. I now talk about my life in terms of chemo cycles, rather than weeks or days. I’ve set up a excel spreadsheet (old habits die hard) which says what I’ve done each and also plans what I’m doing in the future, and whilst it’s nice to look back on it and see what a great time I’ve had, it also is a reminder that the last four months of my life have been heavily affected. I’m now more accepting of the situation but it’s also depressing that this is now very much my life and also makes me feel a bit like the cancer is defining me as a person, as it’s the biggest conversation topic with everyone I know and l can’t help dwelling on it sometimes. I think that even with things going as well as they can be going, and still enjoying my life to a large degree and making very good use of my time, it has got to me a little bit. I don’t think I should be too hard on myself though. Because I’m so busy seeing people it isn’t really giving me time to dwell on the precarious nature of my situation too much, which is definitely a good thing, but unfortunately means you won't get any in depth insight into life with cancer in this post (particularly as its 1am). Maybe in the next post I’ll discuss a bit more what’s going on in my head.

So this leads in to Cycle 3. The week itself went well. The fatigue is worse, as expected, but still relatively manageable. The only real change from previous months is that my appetite is lower. It was a bit weird to have a delicious meal due in two hours in the hospital and to be feeling really sick at the thought of not being able to eat it, and having to struggle through it when it arrives. From being someone who can eat non-stop and is constantly impressing people with portion sizes, this was a bit distressing, but also not that big a deal and I think I got in 2000 calories so I’m not in any immediate danger of wasting away. I beat a few people at chess, many of whom I had to teach the rules to beforehand. The experience was more boring and depressing than anything else. My friends who were with me at the hospital all commented that I appeared more lucid during the week, and on the Friday when I left I felt like I was capable of going to a gig which I definitely hadn’t the previous month. But as soon as I got home I crashed hard. I had a few mates round that evening and gave the bare minimum of conversation whilst I moved around the lounge into a variety of pathetic positions yoga has yet to find names for. I then had maybe the worst weekend of the chemo so far – just an overwhelming fatigue which left me feeling wiped and unable to get comfortable at all, as well as weakness from the lack of appetite. Maybe due to the fatigue or maybe as a separate side effect, I also feel ‘stupider’. My texting and typing has got ridiculously bad and my mind is working slowly. You wouldn’t believe the number of times I’ve had to reread and edit this before posting, and rewriting texts before I send them. I’m hoping this is just a temporary thing. My dad and step-mum always visit during this post hospital period and I feel guilty that it’s me at my worst and I’m not able to really give much in the way of conversation of entertainment, and I feel they are pretty bored here, but I really appreciate them being here none the less and its great to have them around.

I think now that I’m in Cycle 3 I’ve learnt a few things. Eating little and often, and selecting the right foods, is now a bit more of a necessity. Having a nap around 4-6pm is useful and, even if I don’t feel tired, I will always be able to fall asleep. Getting out and doing something, anything, is always going to make me feel better and improve my mood and I’m able to do it earlier than I thought – even with higher fatigue I’ve had a busier week 2 in this cycle. Generally, things are going well. Aside from the fatigue, and slight loss of appetite, I’m actually having less side effects than the first 2 cycles. The main difference is that I am just so tired all the time – I feel at most moments of the day I could close my eyes and fall asleep, and a lot of the day is spent just ‘chilling’. However, this isn’t a problem (due to my work being so generous and accommodating and my friends and family being so amazing). My meditation habit is also more regimented which I think is good for my mind even if a lot of it is just spent sitting thinking rather than focusing on breathing. I’m also reading a lot more than I was, some interesting books (I’d recommend Prisoners of Geography for non-fiction fans), and that’s keeping me entertained.

There are still things I can improve – more (non-walking) exercise would be good as would some body weight work or yoga to help my feel like I’m keeping my body feel in relatively good shape. I watched naked attraction the other day, classic Channel 4, which was a nice confidence boost and reminder that I’m still in better shape than most of the population, even if I’m not at the highs I was hitting in February this year. I can also try and do more around the flat to help out – my sister is being as incredible as ever but I think that if I have the energy to walk to London Bridge or to go to some outdoor cinema event, I could probably help a bit more with the cleaning and washing up! Diet could do with a bit of fine tuning as well. Some advice for my friends who want to help – keep doing what you’re doing, you are all amazing, but try and make me be active if I’m lulling about doing nothing, as it helps me feel better. Even if it’s just stretching or yoga its good for me. I may well protest but ignore it (although if I really protest, that’s a sign to leave me alone).

A quick medical update. My mitotane level in the last 3 blood tests has been between the range of 14-21 which is where it should be, so they will be looking to drop down to having blood tests every 2 weeks as if its consistent then it’s not necessary to have them more often and it saves me having a needle in my arm and getting asked banal questions by the annoying nurse. My cortisol level is now low which is an indication that the tumour is non-secreting and the mitotane is doing its job (a positive thing) and I will meet my endocrinologist next week to do a more thorough test of all my hormones to see if everything is fine an if anything needs adjusting. I’m feeling less pressure in my right abdominal region, where the tumour is, which can only be a good thing, but on the flip side I’ve tried to not panic too much if I do feel pressure in that area so it is best just to ignore any sensory feelings as much as possible.  Generally, the doctors and nurses and very happy with how I’m dealing with things. I am due a scan two weeks into Cycle 4 to see how things have progressed and to decide on the next moves. Until then, just keeping ploughing on.

In summary, I’m at the end of week 2, and hopefully past the worst of this cycle. I’m going to concentrate on having a fun couple of weeks ahead of me (with plenty of napping) before starting Cycle 4. I might look at getting abroad somewhere in the EU for a weekend before it starts (Oslo or Krakow currently being top options) but still see how things fit in. I’m conscious that soon, the European summer will be well and truly over and no overseas destinations will be viable so I should make the most of it whilst I can. Other than that, reading, napping, seeing friends and listening to music will be my life. Pretty ideal!

Greenwich. I still love London