The Chemotherapy Diaries

The 7 Days of Chemo

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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.

Establishing the Norm

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The Chemotherapy Diaries

There seems to be a thing with unpalatable words beginning with ‘C’. For many people outside of Scotland, the natural word that comes to mind is… well, you know, See You Next Tuesday. The theme of this series is based on a different ‘C’ word though: chemotherapy. Throughout this series, I’m going to be writing about my experience with chemotherapy.

My first day of chemotherapy was Saturday 27th November. It was in the shower that morning that the impact of the word truly hit me. All of a sudden, I felt overwhelmed by feelings of the most genuine fear I had felt in weeks. A thought had occurred to me that after today things may never go back to ‘normal’ again. This may be the start of years of chemotherapy, radiotherapy, and whatever other techniques needed to make me well by doing quite the opposite to my body in the short term. I sat on the floor of the wet room with water running down my body and cried. “Things can only get better from here” I thought. My parent’s bathroom has underfloor heating at least, so it is a comfortable place to have a breakdown.

Despite being in the middle of my second cycle of chemotherapy whilst writing this, I still feel non-the-wiser as to exactly what it is and how it works. It seems to be some form of dark magic whose chance of success is based on some loose parameters, such as how positive you are and whether you eat enough Manuka honey each day. What I do know is that I show up at the hospital every other Saturday and one of the wonderful nurses connects me to a machine. We then embark on the 5-hour journey of trying to assassinate some cancer cells together. I, armed with my Nintendo Switch, a few books and my phone, and the nurse, armed with the actual chemotherapy drugs and supplying every useful part of the operation.

The drugs themselves are delivered through a port that sits under the skin on the right side of my chest. If it is sounding like a storyline from a sci-fi film, it’s because it may as well be. The procedure to install it was fairly simple. An incision is made in the chest and the silicone device is inserted under the pocket of the skin. Another incision is then made in the neck where a vein sits, and a line is fed under the skin from the device and into the vein. I realise that it sounds like I was sitting watching the entire procedure, but rest assured I was not. I was lying on a table facing the opposite way and discussing skiing with the doctor. I made the mistake of asking “what was that?” at one point, and the doctor responded that he was tunnelling between the 2 incisions with a rod. I ceased asking any more questions about the procedure after that and tried to keep the conversation fixed on skiing only. My knowledge of the procedure has been regurgitated from a video I had to watch before signing some forms, so take it with a pinch of salt. I have a very bad memory after all.

Each chemotherapy session begins with me sitting topless whilst a nurse plunges a needle into the silicone device. It sounds worse than it is really, and I would take a needle to the chest over a needle directly to the vein any day. I’m usually the youngest person in the room; a title I hold proudly and defend ferociously. It also seems that every other chair manages to turnover approximately 2 people in the time it takes my treatment to be delivered. So not only am I insisting that I am the youngest, but I am also claiming to have the hardest and longest treatment. Narcissism is a little-documented side-effect of chemotherapy.

Chemotherapy bag no 1 takes two hours. Although I have only had two sessions so far, I like to refer to this as the honeymoon phase of the treatment. Despite the warnings of severe stomach cramps and diarrhoea, I sail through this part of the treatment with my book in hand and smile on face, joking with the nurses and enjoying my Saturday morning. Bag no 2 is where the problems start to begin.

It is hard to explain all of the side effects that start to occur during the delivery of the second bag. Apparently, it is particularly bad as it not only delivers some of the more uncomfortable side effects of chemotherapy generally, but bag no 1 is also settling into its job of making my life hell by this point. They are quite the formidable team chemotherapy bag no 1 and 2, and together they deliver a plethora of weird and wonderful problems for my body.

After about 15 minutes of bag no 2, a cloud of tiredness and nausea creeps over me, and I am forced to abandon my book and blasé attitude towards the day’s treatment. My fingers and jaw begin to cramp, and I get an extreme form of pins and needles in both. For some reason, my jaw actually locks up so badly that I start to slur my words like I’ve been upgrading the free hospital coffee to Irish all morning. The jaw symptoms are especially weird as none of the nurses or doctors seem to understand why that happens to me, and they say that they haven’t seen it before. Even more concerning is how little it seems to phase medical professionals when a symptom of chemotherapy is undocumented. As previously mentioned, chemotherapy is a dark magic and not a science, so maybe this isn’t that surprising or concerning.

In the first session, I had to be accompanied to the toilet during bag no 2. The nurse came over to me and kindly asked “is everything Ok?”. I’m not sure what prompted the question, as I sat keeled over with my head between my knees, dripping with sweat and trying not to move a muscle to prevent myself from feeling any sicker. “I think I’m starting to feel a little bit dreadful” I responded, only half joking. My jaw was locked at this point, so I doubt she made out a single word of my response, but she knew what I was trying to say. It wasn’t her first rodeo. She helped me onto my feet and told me I should try to go to the bathroom. Another nurse appeared in my peripheral vision and handed me a little cardboard bucket in case I needed to throw up. I was deeply insulted by this. Throughout my life I have prided myself on my ability to never throw up. It is the reason I used to regularly fall asleep in nightclubs at university. Better that than throw up. I decided it wasn’t the right time to start an argument; she was only being nice after all. In the second session I managed to walk to the toilet by myself, so there are signs of improvement already.

Once bag number 2 is finished, the nurse attaches my baby bottle of chemotherapy drugs to the line, and I am sent on my way. This bottle is quite fascinating – it contains a balloon inside it full of chemotherapy goodness. Over the next 48 hours the balloon diminishes in size as the drugs are pushed through the line and into my system. A district nurse then comes to my house to disconnect it. And that concludes the delivery of chemotherapy into my body. It is only the start of their effect on me however, as I brace myself for the 2 weeks of suffering before the next session.