nickwbenson

[nickwbenson]

Day 47

Today was alright; I definitely don't feel good, but I'm still riding relatively high from finishing my last long day of infusions.

I slept for around 12 hours last night and woke up feeling nauseous and not up for the day ahead of me. I was struggling to hydrate, didn't want to eat and was just feeling shitty. The day really turned around once I had some breakfast and started working on my grandma pizza adventure. The pizza came out pretty well (pic below, I may try again tomorrow with a few tweaks). It felt really good to work on a project and achieve something--I'm a pretty goal-oriented person in general, so it's been hard to sit around for the last two months not really able to lay out and execute even simple tasks.

I can't tell you what I did for the rest of the afternoon, because I truly don't remember, but dinner rolled around (chicken in tomato sauce, very good, I could taste the tomatoes!) and now I'm just waiting to get sleepy. As ever these days, I'm looking forward to going to sleep so I can close out another "successful" day of surviving chemo.

[nickwbenson]

Day 46

Long infusion days: done ✅

It was a stop/start day: my veins are a little sick of all the chemo, and they're becoming more unruly as treatment continues. Luckily I only have a couple more infusions left, because otherwise it could become very annoying (I won't go into further detail here, but feel free to ask me for more info if you're curious!).

I don't really want to talk about the infusion day at all, I'm just so happy to have it behind me. Food is still proving to be the main struggle, and it's getting tougher by the day, but I'll make it through. I imagine that the next seven days may be very difficult, but I will come out on the other side ready to eat all the foods that I've been craving but unable to taste.

I tried to blast my taste buds at dinner tonight with Japanese katsu curry and spicy pickles, but the curry ended up tasting like water sauce. Out of everything on the table, the one flavor that I could pick up with any significance was the mild chicken stock in my mom's ramen. I'm no longer even pretending to look at things scientifically, I just have no fucking clue what I will and won't be able to taste. The spicy BBQ sauce that I was eating by the spoonful paled in comparison to the delicate ramen broth.

Tomorrow I'm going to try making grandma pizza for lunch. I have been craving pan pizzas recently: Detroit, Chicago, Sicilian, all of it. I'm feeling good about the prospect for a few reasons:

I was able to taste the tomato soup last night, and my pizza sauce is basically just tomatoes.

Mozzarella isn't even that flavorful to begin with, so if I can't taste it there is minimal loss.

The crust on the pizza is basically going to be shallow-fried in oil, so I'm confident that the texture will be pleasant even if the flavor doesn't come through.

Surely if I whack enough garlic on that thing I'll be able to taste some of it.

Excited to go to bed shortly and have another day officially in the books. One day closer to this all being over; I don't know when that day will come, but it will come. Today was a huge step in that direction, and I'm immensely proud of myself for all I've achieved thus far 🚀

[nickwbenson]

Day 45

I felt like a cancer patient today. It was a very long day of infusions, and I didn't help myself by sitting in my chair for the entire time either trying and failing to doze off or scrolling on my phone. I also didn't eat or drink much today--before dinner, I had only managed two breakfast bars and a couple bits of chicken. I also just look more "cancer-y" than I have previously; I'm very pale and my skin is splotchy, my eyebrows are thin, and I generally look like somebody who's been poisoned for going on seven weeks.

I don't feel like my spirit is broken, but physically the chemo is taking its toll. I now can't really taste sweet foods either, and eating is becoming more of a chore with every passing day. I had tomato soup for dinner, which was fantastic because I was able to pick up the spice from the chili flakes and a little bit of the tomato itself. I also had a fried haddock sandwich, but the only thing that I could taste was a slight hint of the white fish flavor itself. Both Eva and my mom have pointed out that I seem to only be picking up the subtlest flavors in a lot of our meals; I was expecting to be able to register the tartare sauce and pickles tonight, for instance, but all I was left with was the actual fish.

Tomorrow is my last long day of infusions, and to say I'm looking forward to getting through it is an understatement in the extreme. I know that I'm going to continue to feel worse in the coming days, but having these long slogs behind me will hopefully deliver a much needed mental boost.

[nickwbenson]

Day 44

Woke up and went to the hospital for treatment, expecting to spend the night as I have done on every previous occasion. To my great surprise they offered to let me go home after my infusions and come back tomorrow for more! This is a huge mental boost--as I'm sure regular readers are aware, nothing seems to hit my mental health as much as a stay at the hospital.

I whittled away the day by napping, talking to people on the phone and browsing the internet. When I got home at around 5pm, I sat around for a while longer and then took another nap before dinner. I have just finished dinner and had a shower, and my bedtime is rapidly approaching.

It's still early days, but thus far I have been much more tired this cycle than in either of the previous two. It makes sense, as the chemo is cumulative, but I wasn't necessarily expecting the shift. It's not a particularly bad tired feeling, I really just want to nap all day. Passing the hours by sleeping isn't a bad thing when you're counting down the days, so I'm not going to complain if it stays this way for the next week or two.

P.S. Here's the album that I have had on repeat recently. Sticking this in here for archival purposes.

[nickwbenson]

Day 43

Another one in the books, and a relatively uneventful day as they go. Infusions from 9:30am-2:30pm, then home. Not sure exactly how I have passed the hours since getting home, my memory is evading me. Didn't read, didn't watch TV, didn't listen to anything.

I know that sounds like a depressing existence but it doesn't seem to get me down. In these moments when both my mind and body are of limited capacity, staring into the middle distance or just lying down underneath a blanket is often all the "activity" I need.

Hospital tomorrow morning for this weekend's infusions--I'm desperately hoping that tomorrow night will be the last night I need to spend in that place.

The olanzapine is hitting me like a brick wall, so off I jaunt for an early bedtime. Might need to watch an episode of Emily in Paris first though, if only to make my current lifestyle even more distressing for outside observers.

[nickwbenson]

Day 42

Cycle 3, Day 1--back at it once more!

Today went pretty well, and I'm excited to be back in the saddle getting properly poisoned again. The wait was getting to me, so it's disturbingly energizing to finally be back in the chair for another long day. Or maybe all of the steroids were energizing...let's settle on a combination of the two.

The day from start to finish was about 6 hours and consisted of all three drugs (BEP). I felt a wave of boredom early in the morning, when I was still on my first bag of pre-hydration, so I posted an impromptu Q&A on my Instagram in an effort to stave off the approaching ennui. It ended up working remarkably well, and people asked so many thoughtful questions! In the end the day went by fairly quickly, between answering people's questions and having offshoot conversations with individuals in my DMs. I'm going to post the AMA permanently on my highlighted stories in case anybody is curious to go back and have a gander.

The most challenging question asked was whether or not I would be able to describe chemo to someone who hasn't been through it themselves. I was thinking about this for the rest of the day, and while I hit on some good points in my IG response it still left a lot to be desired. I think the answer to the posed question has to be "no;" in my opinion, it would be irresponsible of any chemo patient or former chemo patient to believe the answer to be "yes." This isn't to say that you can't attempt to describe your experience, but it would be in bad faith to describe your experience as somehow universal (or anything close to that). Ultimately, the chemo experience is just so different for everyone.

I'll keep thinking about this question for a while longer I'm sure, and I have no doubt that my reasoning will change as it marinates. I sure wish that somebody could have given me the complete rundown on the chemo experience before I started my own, but I'm glad now that nobody was foolish enough to try. I listened to a lot of individual experiences, but nobody that I spoke to ever said "you will feel this way," "expect to feel like this," or anything similar. Listening to people's stories was helpful and reassuring without being misleading or unnecessarily scaremongering.

[nickwbenson]

Day 40

Alright, Nick here, back at it. Eva's post yesterday was the fuel that I needed to reignite the flame that is this blog. Excuse that terrible piece of writing, I'll just blame it on the chemo.

I met with my oncologist today for my cycle two round-up/cycle three plan of attack. There was good news again--my tumor markers have fallen even further, and everything in my bloodwork is now within normal (non-cancerous) range! As I specified last time around, this does not mean that I am cancer free, but it is a big step in the right direction. It means that I could be cancer free, and I'm trying to take the wins where I can get them these days. So, 🎉!

As cycle three gets closer and closer (only two sleeps away), I'm getting less and less excited about the prospect. I'm still very ready to get going and get it over with, but I'm not expecting it to be a fun time. I feel alright at the moment, but my body hasn't bounced back in the same way that it did first time round. There are still lingering side effects that had either gone away or hadn't yet manifested after cycle one, so I'm anticipating an even tougher last trip round the bags of life.

At this point I would usually be steeling myself for the weeks ahead, but I'm not really doing that. I'm almost submitting to the unpredictability of the future this time over, which feels both dangerous and freeing. On the one hand, I'm not performing mental gymnastics all day to prepare myself for the trip to hell and back; on the other hand, as a result I could be totally T-boned by this cycle at a blind intersection. I really don't know what's up with the metaphors, and I'm deeply embarrassed, but I'm going to leave them in here anyway.

[nickwbenson]

Day 39

Eva here, filling in some days because a week has gone by and it’s hard to get back in the saddle and I offered to recap this week so Nick can get back to regular programming. This blog post will take the form of an extended rose, bud, thorn, because that’s what my brain can do!

Thorns of the last week:

Thursday’s fever was a doozy (104F/40C) that left Nick physically exhausted and both of us mentally exhausted. It was a side effect of Thursday’s bleomycin infusion right off the back of a late night bone marrow injection. (Hair of the dog does not work when it comes to chemo.) This meant there was fortunately no worry about infection and we were able to ride it out at home without going to the hospital, but Nick was still shivering uncontrollably on the couch for several hours as we monitored his temperature and medicated with paracetamol and The Office.

Food lost a lot of its joy last week as more and more tastebuds have dropped off the scene. At the worst, it seemed like sweet foods were the only thing that registered any flavor, which left Nick feeling ill and craving savory foods. He’s discovered more luck with acid and spicy flavors in the last couple days, which are better for the tastebuds but bad for the ol’ GERD and reflux.

Connor is leaving for New York tomorrow :( We’re excited for him but also… his presence has been a big boost to both of us and we’ll miss him!

Roses of the last week:

On Sunday we went for a very springy, sunny walk on Hampstead Heath with a friend, followed by a pub garden lunch. It was the most sunshine and walking either of us have had in at least two weeks, and Nick enjoyed both his pub lunch (calamari starter and half a roast chicken with veg — who knew that would be a good idea?) and that night’s dinner (homemade fried fish sandwiches and tomato soup — I can attest, they were both insanely good).

I just asked Nick for another and he also said “calamari,” so it may be safe to say it was a hard week. (As evinced also by the lack of blog posts by the blog’s actual author.)

Buds for the coming week:

Thursday starts the last round of cisplatin infusions! A week from now, Nick will be home again and feeling like garbage from his final cisplatin bag!

We’re both starting to dream of late spring and summer plans to come. FA Cup semi-final at Wembley in late April…?

It’s literally spring and there are buds and flowers everywhere. That does just make things better.

[nickwbenson]

Day 31

No improvement over the weekend as far as my taste buds are concerned, but in general I'm feeling a little bit better every day. My hearing is also still continuing to get worse, but I remember that being the case around the halfway point in cycle one too. I'm expecting my hearing to improve in the last week before cycle three.

I know that my body needs the next 10 days to recover, but I'm getting impatient. This in-between period, when I'm not feeling at 100% but also not feeling like complete shit, is mentally tough in certain ways. I'm just sitting around counting the days off--my favorite part of every day is when I finally feel tired enough to turn in for the night. I'm not feeling depressed, but I'm not exactly taking much joy in life either. But maybe wanting to take joy in life mid-chemo is just an inherently tall ask.

I'm aiming to have one plan every day, just to make the time tick by that little bit faster. The plan doesn't have to be a big one, and it doesn't even have to be a real plan--planning to "get outside" isn't exactly inspiring, but if that's all I have for the day then it's better than nothing.

The next week and a half will in some respects be one of the most difficult stretches of my treatment. I'm not looking forward to cycle three, because I believe it will be by far the most physically demanding of my cycles, but I am looking forward to getting to cycle three. I know that it needs to be done, and I'm antsy to get started. I'm hopeful that once I start the last cycle the end will finally feel in sight, and maybe that will make the cycle easier despite the more intense side effects. But for now, just need to keep checking days off the calendar.

[nickwbenson]

Day 29

The bleomycin infusion yesterday went exactly as planned--and honestly, the bleo only days barely even feel like an infusion day any more. I'm only in the chair for about two hours total, and I don't really expect any side effects as a result of the treatment.

Regarding how I'm feeling right now, mentally I'm pretty sharp. My nausea also hasn't been too bad, although my stomach has been constantly unsettled. I am however starting to experience some side effects that didn't present at all in the first cycle, and they're making me feel like kind of a lizard person. TW: I'm gonna describe some stuff in the next paragraph that's not too gross, but gross enough that you should skip if you're super squeamish.

The skin, particularly on my hands, is super sensitive at the moment; I have suddenly started getting blisters everywhere just from doing small tasks like opening doors and putting on shoes. My skin is drying out pretty much everywhere, but more so in some places than others. My tongue is also very sensitive; it feels like I have a cut over every single one of my taste buds. And I'm also getting a lot of cuts inside my nostrils, and they're proving very slow to heal. It's surprising exactly how uncomfortable nostril cuts are!

I started my neutrophil shots today, the first of six days in a row, so hopefully my immune system will continue to tick over nicely. I'm planning to go to the pub (outdoors) on Sunday, partly to socialize and partly to celebrate my relatively newfound ability to socialize. I'm hoping that my sense of taste might start to return to normal soon, because it's starting to wear on me--all of my favorite foods are primarily flavored by salt, apparently. But all in all, I have to say that cycle two has so far been pretty kind to me *knock on wood*.

[nickwbenson]

Day 27

I felt better today than I did yesterday. Eva pointed out that I was smiling on and off today, something that had barely happened at all the day before. For portions of the day I felt almost like myself, just a version of myself with constant tinnitus and background nausea. I probably don't want to admit to myself exactly how much better I felt for fear of jinxing it.

Having said that, today was of course not without its struggles. Hydration is yet again rearing its ugly head, and while I'm doing just about enough to stay afloat I'm definitely not drinking as much as I should be. My altered taste buds are also kind of a bummer, for lack of a better word. I could barely taste my Pret ham & cheese toastie, and those suckers are usually bursting at the seams with flavor!

In some exciting news, my nurse gave me the all-clear to eat yogurt. I'm eager to take on as many probiotics as I can--my stomach has been pretty raw ever since I landed in the hospital with that mystery fever almost a week and a half ago. Two days of heavy IV antibiotics definitely did a number on my gut biome and it hasn't really had a chance to recover yet (until now). I'm gonna be hitting the live culture greek whole fat at least once a day, probably twice. Watch this space.

Day 8 bleomycin tomorrow afternoon--excited to get another infusion on the books! Also cautiously optimistic that I'll feel even better again tomorrow than I did today.

[nickwbenson]

Day 26

The last few days have been tough--I didn't even post yesterday because I was feeling so shitty, both mentally and physically. It's more or less the same story again tonight, but I'm posting anyway because I know I'll want a record of these moments to look back on.

The good news is that, as of yesterday, I'm more than halfway done with my infusions. To add to that, I'm done with 2/3rds of my Cisplatin infusions, which is the drug that wreaks the most havoc in my body. It definitely doesn't feel good right now, but it's nice to know that I'm well on the way to hopefully being finished with treatment.

The nausea has been significantly worse this cycle, and the medications I'm taking to control it aren't working as effectively. I almost ate myself sick at dinner tonight just so I could ease the nausea for a few moments; the only time during the day when I'm not nauseous is when I'm actively consuming food. And consuming food has become somewhat of a chore because I have stopped being able to taste salt. Umami flavors only I guess. It's a weird one.

I'm also experiencing more "chemo brain" than I did during the first cycle. This one is particularly tough to describe: I'm too awake to sleep, too foggy to think about much and yet too bored to do nothing. TV, music, video games, podcasts, staring into the middle distance--nothing really seems to help. I'm kind of just sleepwalking through the day until I can call it a night. One day soon I'll wake up and feel better than I did yesterday!

[nickwbenson]

Day 24

Infusions done: 9/19!

Another morning waking up in the hospital. It was a pretty frustrating day, everything on the ward seemed to be taking as long as humanly possible. Inpatient days are always longer than outpatient days because the nurses are attending to very sick patients as well as patients like me.

I started my first bag of fluids at around 10:30am, and I was discharged around 4pm. The time in between was spent counting down the minutes until I could go home, trying to distract myself in any way possible.

As with cycle 1, I am now beginning to feel some pretty consistent background nausea even with the meds. It's still very manageable, but I'm finding water in particular to be an increasingly difficult task. Luckily I have some tricks up my sleeve from the previous cycle, so I'm feeling prepared to weather the hydration storm!

After day 5 tomorrow I get a two day break before going in for my Day 8 infusion--it's hard to describe how needed that period of rest feels right now. I thought that the difference between three days and five days of infusions at the start of the cycle wouldn't make a huge difference, but I have been proven wrong. Five days straight has been a serious grind, and I can't wait to see the back of it (until cycle 3 comes around).

[nickwbenson]

Day 23

Infusions done: 8/19!

Woke up and headed straight to the hospital for my inpatient stay. I was (and still am) feeling incredibly grateful that I only need to do one night of inpatient, but it's still going to be a struggle to get through.

As soon as I got to the hospital they set me up on my pre-hydration drip and I fell asleep almost immediately. I woke up around noon (as I was being hooked up to my Etoposide dose) and ordered a halloumi wrap from Leon. I promised myself that I wouldn't eat any hospital food at all this time, in an effort to control my nausea.

The rest of the day was spent in a now all-too-depressingly familiar routine--knitting, playing Switch, and just generally sitting around until I felt tired enough to turn in for the night. In the end I fell asleep while watching MOTD, and woke up at midnight to get myself properly washed up and into bed. Another day in the books, and I get to leave the hospital tomorrow!

[nickwbenson]

Day 22

Infusions done: 7/19!

Late again to post--I have been taking the olanzapine around 5:30pm, and it's been rendering me essentially useless for the rest of the evening. I can physically stay awake for a few hours after taking it, but the thought of doing anything even resembling a blog post is several bridges too far.

Day 22 was on the whole pretty uneventful. I went in for another day of outpatient infusions, albeit slightly shorter than yesterday (for Days 2-5 of this cycle, I'm only having Cisplatin and Etoposide, which makes the day ~1 hour shorter). I had a kind bar and two fruit salads for breakfast, and spent most of the infusion playing on my Switch and practicing my purl stitches. If anybody has insight into why my purl stitches are so tight, please let me know! My knit stitches have perfect tension as far as I can tell, but it's a struggle to thread the needle through every purl stitch I complete.

After getting home I had a late lunch and then settled in for an unremarkable afternoon and evening. I can't even remember what I did with myself, but at least that means that the routine is working and the days are starting to go by a touch faster. Apart from the occasional light nausea (1-2/10) and some increasing ringing in my ears, Cycle 2 is treating me well so far. I know this won't last, but I'm trying to take my rest where I can get it.

Hospital tomorrow for Days 3 & 4 of Cycle 2--hoping to get out early on Sunday to minimize my time on the ward!

[nickwbenson]

Day 21

Infusions done: 6/19!

Somewhat late with this post as it was a very long (but not bad) day. I began Cycle 2 first thing in the morning, after sitting in tube strike traffic on the way to the infusion center. This was my first time at this particular outpatient location, and the nursing team are all absolutely fantastic! I was made to feel immediately welcome, and the cannula that was put into my arm by Joel was second to none. I know it's kind of gross, but when you've had as many IVs as I have in the last two months, you can really feel the difference between a good one and a bad one.

I received all three drugs, as well as tons of fluids and steroids. I ended up putting on 3kg just in fluid retention, although most of that extra weight worked its way out in the evening. The vast majority of my day was spent knitting and talking to other patients and nurses--in addition to going home in the evenings, one of the reasons that I prefer outpatient so much is because of the social engagement. The isolation of inpatient is so tough, it's hard to accurately put into words.

At around 4:15pm I packed my bags and left for the day. For most of the night I felt completely fine, and at around 10pm I took my anti-nausea medication just to stay ahead of things. The drug that I take while I'm doing infusions is called Olanzapine, and it's actually an anti-psychotic drug used mostly to treat schizophrenia and bipolar disorder. For me, it just prevents nausea and makes me really sleepy. I actually fell asleep at the dining room table knitting, and moved myself to bed around 11:30pm. Day 1 of Cycle 2 is in the books ✅

[nickwbenson]

Day 20

I slept until 1pm today, which was annoying but probably also much needed. I may need to turn the thermostat up a couple of degrees in my bedroom, because my head was so cold last night! For anyone who has never been bald, I can confirm that without hair your head is constantly freezing.

Today's big event was an in-person meeting with my oncologist. The meeting served as both a wrap-up of Cycle 1 and a look forward at Cycle 2, which starts tomorrow bright and early. We spoke about a number of things, but on the whole he is very happy with my progress so far. My tumor markers have returned more or less to normal levels, meaning that there is a good chance that the chemo is working swimmingly! The markers alone only paint a part of the picture, but hearing this news gave me a huge lift nonetheless.

Tomorrow morning, 8:30am, the first bag of Cycle 2 drops. I'm doing infusions on Days 1-5 this time around (instead of Days 1-3, as in Cycle 1) in order to protect my hearing. The Cisplatin was given over two days in the first cycle, but my doctor is going to spread the same dose out over five days this time in the hopes of lessening the hearing-related side effects. Adding two days of infusions definitely isn't ideal (read: it sucks), but I'll do anything to try and protect my hearing in the long-term!