The Chemotherapy Diaries
It’s been years with the hope kept close to my chest
That what I’ll get will be better than what I have
So I’ll stay inside and try to sleep my days away
Days Away – Pentimento
It’s been a strange cycle so far. With the last one being 3 weeks long instead of 2, I got a taste of normality. The extra week did me a world of a good and it certainly helped my mouth settle down after ulcer-gate. I had actually forgotten what it was like to have a relatively normal amount of energy, but had not realised that I had forgotten, if that makes sense. The months on chemotherapy shifts what the standard is in your mind of what is ‘normal’. It is hard for me to truly remember what my energy levels were like before I started treatment now, but I also had another month-worth of time where I was very ill before starting treatment. This was when I was in and out of the hospital, trying to establish what was wrong with me. It means that I haven’t felt at full strength for over 5 months now. That third week I was given off chemotherapy is probably the best I have felt since before I even fell ill. I got quite caught up in it. My runs were faster, I was up earlier each day and life wasn’t fatiguing me anywhere near as much. It was easier to go to restaurants, laugh with friends and enjoy myself. I was also really happy with the few blog posts I did that week, and wish I had spent time writing more. The whole experience has made me yearn for a return to a similar state of normality. Perhaps that helps explain the last week I have had with cycle 8.
There isn’t a lot to complain about, per se. Physically, in terms of symptoms, it hasn’t been a particularly bad cycle. My nurse during treatment warned me about cycle 8. “A lot of people find this one the hardest. The accumulation of drugs and mental fatigue can take its toll. Let us know if you need a break. Your oncology team can give you a month off if you’re feeling run down by it all.” She had a lovely Geordie accent; I could have sat listening to her speak all day. She was also extremely complimentary about my baking and kept coming over to chat to me about restaurants that she recommends that were nearby in Manchester. It always makes the session go quicker when you have a friendly nurse who likes to chat – although, almost all of them are like this at The Christie. By the time I left the hospital, she had already eaten 3 slices of the victoria sponge cake. I was impressed she was so skinny – it must be those laps around the chemotherapy ward, turning off all the alarms on the machines and chatting to the patients.
The problems with this cycle have been more subtle for me. I’ve felt extremely disconnected, unmotivated and absent. For the first 4 days of the cycle, I really didn’t know what was going on, what I had done, when I had fallen asleep and when I had just been sitting there doing nothing. The world seemed to be happening in spite of me, as opposed to me participating in anything that was going on. When I finally got myself motivated to go running on Thursday, it didn’t feel like my brain was controlling my feet. There was a disconnect between the 2. I felt myself running along but didn’t feel like I had any autonomy over the situation. My body knew I was running and was doing it, but my brain wasn’t interested enough to be involved. It is this apathy that is hitting other areas of my life.
It is a strange phenomenon really. I can’t quite sum it up in a way that even makes sense to me. The lyrics quoted at the start of the blog post stand out at the minute because it feels that they describe the situation well. On Wednesday, I was trying to reflect back on the past few days but I genuinely couldn’t recall what I had done. I barely knew how often I had been awake or asleep. Everything had blurred into one elongated memory of me just sitting around the house, occasionally cooking, occasionally walking. My mum and I went and visited friends together on Tuesday which was really nice. I even drove there and back as mum doesn’t like the motorway, something which I am not usually able to do that soon after treatment because my fingers cramp up badly. It only lasts about 5 days, but I try and avoid driving during this time in case it happens and I suddenly can’t grip the wheel. This is what I mean about the cycle not really being as bad in terms of physical symptoms, though. My hands only cramped for a day or 2 this time. All of the shortcomings of the cycle feel relatively indescribable and intangible. After having such a good extra week in the last cycle, I now feel like I am holding onto hope that I will be able to feel like that permanently, but am condemned to continue with the hard miles for now; sleeping away the time if necessary, just trying to get through it.
There is nothing worse in life than wishing time away, though, even if I am on chemotherapy. I’ve managed to make the most of the past 4 months and I shouldn’t be stopping that attitude now. The amount I am baking has settled down, but I am cooking a lot. My mum and I just started getting an organic veg box delivered to our house from a local company. It is quite ridiculous that I’ve never had to wash dirt off vegetables before eating them in my entire life, considering vegetables are grown in the ground. The modern world is so disconnected from the reality of food. Whilst watching Come Dine With Me earlier in the week (a TV show that I am watching far too much of these days), a bunch of guests criticised their host for bringing out the different cuts of steak and explaining to them about their relative qualities. The host of the dinner party was a butcher, so he had a keen interest in this type of thing. Considering all of the guests expressed excitement at seeing steak on the menu, I was surprised that 3 of 4 of them then started to tell him that he had done something wrong by bringing out the different cuts of meat whilst they’re having a dinner party. What do these people think they are eating? This man is explaining to you why different types of steaks taste differently before offering to cut you off a fresh piece of it and cook it to your liking – how is this not your ideal situation if you claim to love steak?! One of them said that they don’t like to see the meat raw unless it is in a packet. It is absolutely baffalling. Well, now I am getting in touch with the origins of my vegetables; I am scrubbing them clean like they are my own offspring, then cooking them with love, which is an unusual place to take this considering what I just said about my offspring.
The vegetable box also presents culinary challenges. So far in my culinary adventures, I have grown accustom to finding a recipe, getting the ingredients from the shop and then making said recipe. It is a pretty straightforward process and I haven’t seen anything wrong with it up to now (other than wasting ingredients more than I would like as I only need them for a single type of recipe). The veg box presents weird and wonderful vegetables that I wouldn’t usually use, however, such as swedes, as well as not giving you all of the exact ingredients you would need to make a particular recipe. That means either going rogue and trying to make something not from a recipe (gasp! gawk!), or going and buying more vegetables from the shop, which feels like you’ve failed at being a good veg box samaritan. Its my first taste of the Masterchef challenge, another TV show where the contestants are offered a large range of ingredients to choose from, then given a brief to cook to – ‘A journey through your childhood’, for example. My brief to myself is simply ‘use things from the veg box and try to make an edible meal’. It isn’t quite as ambitious. Whereas those contestants are incredibly talented chefs who make amazingly innovative meals up on the spot, I make honey roasted swede and carrot. I wanted to see if I can taste the difference between the organic veg and what I’d usually get from the shop, so kept it quite simple. Not too inspiring. The veg was really good, though.
The one thing I have been baking, though, is this Jammy Blackberry and Almond Crumble Cake. I cannot stress enough how good it is. It is SO DAMN NICE. I found it as I was looking for things to do with some almond flour that I was given as part of my amazing birthday present from my amazing best friend Luke. He got me a 6 month subscription to a service which send you 6 unique and unusual ingredients every month. I substituted the ground almonds for the almond flour and cannot believe how nice it turned out. If you’re looking for something to occupy you on this sunny Sunday, I wholeheartedly recommend taking an hour to throw this cake together. It is delicious.
The cycle is easing off now and I am feeling more with it. My challenge to myself is to enjoy the next week as much as possible before I am back to treatment on Saturday. I’m not sure why I have had such a hard time with the blog recently, but I have. The last post didn’t feel cathartic or encouraging, it just felt like I was airing out a lot of dirty laundry and not getting any release from it. I hope it didn’t come across that way. I decided to post it because I thought the things that I was complaining about will likely effect others in my situation, and the ‘cancer experience’ is a key part of this blog, so I felt like I should put those frustrations out into the world. I also want to try and write when I am in a jarring and frustrated mood because, again, that is a reality of having cancer. You can’t always expect yourself to stay afloat when facing such adversity. I’m glad to say that I have enjoyed writing this post a lot more. It feels good to just mindlessly speak about things and not try too hard to be funny, to be interesting, or to write well. Sometimes it is just as good to write whatever is on your mind, in whatever tone you feel comes naturally. Hopefully it is still enjoyable to read.
My friend Charl took the below picture of Lucy yesterday and it is absolutely BEAUTIFUL. Her new favourite spot to sleep is on the top of the back of the sofa in the lounge, where the sun hits for the majority of the day. She can lay there sleeping for hours. I’ve witnessed her fall over the back 3 times now, usually because she is twitching in a dream. The drop is extremely big considering her size and the first time I was very worried about her. I was sitting on the other sofa when I saw something in the corner of my eye. I looked over and it was Lucy’s 2 front paws clumbsily trying to grab onto something as her bottom half had already disappeared behind the back of the sofa. Her eyes were fully opened as she tried to comprehend what was happening to her. She was looking me dead in the eyes as if it was my fault as she finally succumbed to the inevitability of the situation and fell to the floor. All I heard was a large (and fairly comical) thud! I ran over to see if she was ok. She had already got to her feet and was shaking off the embarrassment (I assume this is what she was doing as she wasn’t wet). She then enthusiastically pottered around to the front of the sofa, jumped onto it, climbed onto the arm, made her way up to the summit and went straight back to sleep in the same spot. We could learn a lot from dogs if we really wanted to, couldn’t we? If only humans were that resilient.
7 thoughts on “Days Away”
That Lucy is beautiful! I understand realizing ‘normal’ and surprise that you sort of forgot what it was like. Relish it!
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I actually have forgotten how to walk properly. When I go up and down the stairs, it’s only my left leg and foot that is really working. And then, my quad cane does the rest for my supposedly right leg and foot. It’s the same when I simply walk. It’s more of dragging my right leg. Well…. This is the normal for me now. We’ll get off of this. Keep the faith!
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It’s such a strange feeling isn’t it? I spent the first 20 minutes of the run saying to myself “why can’t I control my own legs anymore?”. We will get off this! It’s so encouraging hearing others experiences 🙂
The disconnection you’re describing reminds me of chemo brain. I struggled with words quite a bit, but also feeling like I wasn’t actually in my own body, like I couldn’t make my limbs, etc. work properly, if that makes sense. Mine got progressively worse with each round of chemo, but then it bounced back fairly quickly afterward. It gets better!
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I got a taste of how quickly your body seems to bounce back from things with my extra week off. Isn’t it strange that it can have such a crazy impact on you? Imagine explaining these things to someone who hasn’t ever been on chemotherapy! They’d think you were mad
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I agree! I think it’s helpful to communicate with others who have been there, as it makes more sense and we can understand it better. My husband was an incredible support during treatment, but I know a lot of stuff just confused him. I’m now part of a virtual group for breast cancer survivors and thrivers under 40, so that’s been a really wonderful place to go to rant, commiserate, ask questions, etc. because most of my local resources were geared toward folks 60+. Have you found any resources like that?
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I haven’t you know… I’ve mainly found people through the blog who share my experience of being younger than the average but every time I join calls with, for example, Pancreatic Cancer UK, I’m usually the only person there under 50. The blog has been my saviour really as it’s where I’ve found nearly everyone I now speak to when I need advise, or want to share a common experience. It sounds great your group – I bet it really helps!
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