The Chemotherapy Diaries
The last Chemotherapy Diaries post was signed off stating that I have 2 weeks of suffering between chemotherapy sessions. I have a confession to make. It is more like 7 days of suffering, followed by 7 days of minor suffering. This doesn’t roll off the tongue quite as well though, so forgive me for being melodramatic. Today we’ll walk through some of the weird and wonderful symptoms of that first 7 days, based on my experience so far.
I’ve had 2 sessions of chemotherapy to date, my first on November 27th and again on December 11th. As my sessions are every 2 weeks on the Saturday, you may notice if you have a particularly impressive mind that my next session was due to be on Christmas Day. I had braced myself for this and was thinking of ways I could make it feel special. “I could wear a Santa hat,” I thought, realising that cancer has turned me into the most boring person on the planet. It needed to be something that would make it feel like Christmas at home, like drinking a White Russian.
My family has a tradition of drinking White Russians on Christmas Day. I’m not sure if this is a traditional drink to have at Christmas, but the drink is predominantly white in colour which is the second most Christmassy colour after red. Even more confusingly, I believe the tradition was started by my sister Josie who is a vegan. If you aren’t spotting why that is confusing, then you probably don’t know that a White Russian is a cocktail mainly consisting of cow’s milk. Her husband has accused her of downing milk in the kitchen at night when no one is awake: I can see where this theory may have come from.
I received the appointment card for chemotherapy session #3 and checked it – ‘Monday 27th December’. Well, there goes my opportunity to wear silly hats and sneak alcoholic drinks that I don’t want to drink onto the ward. I have started to bake things for the nurses on the ward though. For the first session I was too nervous to do anything but show up, but for the second session of chemotherapy I baked the nurses brownies. My nurse paraded them around the ward showing all the other nurses what they had to look forward to. I then received a steady stream of visits from them one by one accusing me of buying them from a shop because they were so nice and thanking me. Baking and blogging, I’m currently fluking competence at both. Maybe I’ll make them a Yule Log for the next session. I made some Belgian Buns that I was quite happy with so I am posting a picture of them. The bake isn’t particularly even and I don’t think I’d be getting a Hollywood handshake, but I’d like to think he’d give me a sympathetic smile or something.
As I’ve only had 2 experiences of the fateful 7 days after chemotherapy treatment, I am still learning about many of the side effects of it on my body. Despite my first actual treatment day being easier than my second, the following 7 days were considerably harder the second time. I’m hoping this trend isn’t going to continue as by session 6 (the final session) I will be unable to crack a single joke about any of it.
The symptoms that the doctors warned me of most, and that I already mentioned in chapter 1, is an adverse reaction from your body to changes in temperature. This manifests in various ways depending on the part of the body in question. For example, if my throat gets cold because I have gone outside without a scarf on, it will swell, and my breathing will become coarse. I start to sound like an excited dog on the end of the leash that seems to get a kick out of being strangled. My voice also sounds like I’ve smoked 20 cigarettes that morning after a heavy night on the town. You also cannot eat anything from the freezer, must avoid cold drinks and ice is your enemy. This was particularly upsetting to me. When I was experiencing a lot of abdominal pain, my diet consisted primarily of Orange flavoured Calippos. If you don’t know what a Calippo is, they are a delicious brand of ice lolly that probably have a higher amount of sugar in them than water. Part of my daily routine was to go to the corner shop and buy 3 during the not-so-warm months of October and November. The shop owner used to give me these strange looks that I didn’t even see him give to the alcoholics buying extra strong lager at 7am on a Monday.
I previously mentioned about the pins and needles in my hands in the first blog. This is another reaction to the cold. For the first 7 days after a treatment day, my hands are extremely sensitive. For example, I was cutting some chicken to give to my dog Lucy for her dinner one day. Upon touching the chicken, my fingers immediately cramped so badly that I couldn’t move them at all. I stood looking at my hand in utter disgust before running it under hot water for a minute or so, which finally restored some movement. Again, cold water is your enemy. Avoid at all costs. It will take away the movement in your hands and leave you with pins and needles so bad that the name is far too meek to adequately describe it: swords and sadness is a better name for this issue.
Gloves are an absolute essential, even when driving. The steering wheel is too cold in December to touch with chemotherapy hands, so I must dress like a chauffeur if I need to go out in the car. I don’t attempt driving until the second week of treatment usually, but this symptom seems to hang around more than others.
The worst symptom for me is the sheer tiredness. It is like nothing I can describe. You don’t just feel like you need a lot of sleep, it leaves you feeling utterly dissociated from the world around you. I have moments where I suddenly realise that I am participating in a conversation with someone, but I am doing so entirely on autopilot. My mind just cannot focus. I start feeling like I am floating through my day, falling asleep regularly and barely being cognisant when I’m awake. And when I do sleep, it is such a deep and unsatisfying thing. I tried to describe it to my brother as feeling like you’re having 3 concurrent dreams at once, but you don’t know what is happening in any of them and cannot even divide them from reality because you usually aren’t in your bed and didn’t plan on falling asleep. He pointed out that it sounded like I was describing the levels of sleep from the movie Inception. Fairly accurate, I guess.
A newer symptom is the chronic back pain. I’ve said it before and I’ll say it again, I’m not a medical professional and this is a very colloquial description of the problem. One of the joys of chemotherapy is that it hammers your white blood cells, leaving you extremely vulnerable to infection and diseases. To counter this, for 5 days after the chemotherapy treatment finishes, you must inject yourself in the stomach once a day. The injection forces your bones to create more white blood cells. Quite amazing really, except the well documented issue that this causes: body aches that feel like someone woke you up that morning by driving a train into your bed.
The pain I have started to get in my back is truly unbearable. The wonderful Anna has had to dedicate blood, sweat and tears to attacking my back with a massage gun at 2am, whilst our puppy Lucy watches in utter bewilderment from her bed on the floor. She must have no idea what’s going on. I called the chemotherapy hotline about this pain on Saturday. To my amazement, they told me to use the painkiller liquid I was issued to full capacity if that is what it takes to kill the pain. This liquid was given to me when I was experiencing a lot of abdominal pain during the night. It was issued alongside a stark warning that it is extremely strong. I can attest to this, and the few times I’ve had to take it I have sat wondering when it’ll kick in for about 3 minutes, before going into an alleviated state of euphoria which I usually wake up from 2 hours later having no idea what just happened. It’s like injecting yourself with absinth. Next cycle, I’m going to be hitting that bottle like it owes me money.
Finally, the jaw pain. Again, I have mentioned this briefly in the first post. It is the mystical symptom that is undocumented but apparently completely normal. When I first put food in my mouth, I get shooting pains throughout my jaw which are so painful I must sit with my head in my hands for about 10 seconds, teeth gritted and palm on forehead. The frustrating thing is that the pain is only in the exact part of my mouth where the food is; so, if I do not try and chew my food with all areas of my mouth straight away, I get the same pain repeatedly as food makes its way around my mouth. This symptom is the one that catches me off guard the most, and I find myself in the middle of a routine conversation with someone in my family whilst I eat my breakfast, only to unexpectedly flinch, utter every expletive under the sun, then put my head in my hands and moan for a few seconds. It’s quite the ride for my family. Writing this has also made me realise how repulsive it is to describe chewing food, so apologies for that.
These have been what I consider to be the most interesting of the symptoms. There are other, more predictable symptoms, such as nausea and an occasional aversion to food. But they are largely manageable with the drugs issued to you. Hair loss is a side-effect associated with my chemotherapy, but it isn’t guaranteed like it is with other types. I think most people who see me these days expect me to show up with even less hair than I already have, but my small amount of hair seems to be staying put for now.
After the first 7 days after treatment, I generally start to feel better. Most of these symptoms remain to some extent, but I can get out of bed and move around the house freely. I even manage to get out and see some friends, which is much needed after the stressful symptom-heavy week. It is to be seen if any of these symptoms worsen the more chemotherapy sessions I attend. Apparently, it is quite common to have a really hard treatment towards the end of the cycle, usually around the 5th session. Although I don’t want this to happen, it may make for some good material for the series. Time will tell.
Ebb and Flow 