I haven’t written an update in a long time, because my neuropathy has gotten much worse since I finished my treatments. It’s painful to type, to write or draw, and it gets worse in the cold. Of course we’ve been having a series of cold days here, which has meant that typing a blog post has been a considerable challenge.
I went through a PET-CT, my third and hopefully my last, last Sunday. It’s a long and not very pleasant experience, but it’s not the worst thing in the world. This week I’ll get the results and discuss with my doctor what to expect over the coming months. Meanwhile, neuropathy is kicking my ass, so posts will be sporadic until things get a little better.
I also got my fourth Covid vaccine, in the hopes of staving off the dreaded Omicron variant. I’ve been constantly masked and hiding as much as possible at home, but I’ve got a series of hospital visits coming up, so I’m hoping that the vaccine (and mask) will help me avoid infection and stay safe.
I started a new reading challenge, but I’m taking my time with it. I just finished the fabulous “The Trees” by Percival Everett, and the pretty terrible “All’s Well” by Mona Awad (lots of good intentions, terrible delivery). If you enjoyed “My Sister, Serial Killer,” you’ll love “The Trees”. It is a darkly funny, fast and very clever detective/revenge story that is just a joy to read, despite the very difficult topic.
I’m not sure what’s next on my reading list, but it may just be a non-fiction book before I delve into the next Tournament of Books pairing.
My hands are making writing problematic, but I did manage to write a pretty long post on the blog this week. It’s a taste of a project that I’ve been wanting to work on even since I got sick, and I look forward to be able to actually sit down and type for longer periods of time to get it done.
I finished my Diamine Inkvent 2021 reviews with 32 pens inked, and I promised myself that I will write them all dry. That’s the most pens I’ve ever had inked at one time, and it’s turning out to be quite a challenge, but a fun and interesting one. This week I’ve written four pens dry (a Lamy Safari, two Monteverde Giant Sequoias and a Sailor Pro Gear Graphite Lighthouse), bringing the count of inked pens down to 22. It’s slow going because I have trouble using my pens, but I am making an effort to journal each day with them, so I do hope to write them all dry by the end of next month. I’ve been using them in my Moleskine, because I love their format the best, and just writing on one side of the page since I have enough notebooks to afford to do that. That way I can use the pens I like in the notebook I like and not worry about avoiding bleedthrough.
I got back to running, which is major. I’ve been a runner since November 2011, until the 7 month break in running that I was forced to take last year due to my cancer and treatments. It was very hard for me to stop running, and it is difficult to get back into it now for various reasons, but I’m lacing up and getting out there and that’s what matters at this point. The most important thing I’m having to learn is to be kind and patient with my body after all it’s been through.
I’ve also watched the charity broadcast of the Mischief Theatre group (of “The Play that Goes Wrong” fame), “Mischief Movie Night In: The Wizard of Paddington Station” . You have until the 31st of January to purchase a ticket to see the broadcast and all the profit goes to charity. It’s a fun, family friendly way to pass an evening and do some good at the same time.
I’m having my (hopefully) last round of Chemo today and I’d thought I’d document the procedure as I go through it.
4:45 – Woke up and started taking care of my cats, making breakfast, getting ready to leave for the hospital. I need to drink at least two glasses of water before I go, one of then with Normalax. The water is because I have to have a blood test before the Chemo starts. The Normalax is to prevent one of the less pleasant side effects of my Chemo: constipation. As in all the rest of the adverse effects, prevention is easier than treatment.
6:00 – I leave my house and set out for the hospital. My dad is giving me a ride as there’s little chance that I’ll be able to catch a cab in this weather. I’m wearing athleisure clothes (sweatpants, t-shirt, hoodie and a coat because it’s raining). I never wear jeans to your Chemo, because logistically they’re harder to manage one handed, and depending on where you have your IV inserted, you may have to manage your pants one handed. It’s the little things.
6:30 – I’m at the hospital. At 6:45 the line opens up for the secretaries of the Hemato-Oncology outpatient treatments. The secretaries themselves start working at 7:30, even though the nursing staff is here largely by 7:00. The Oncology secretaries start working at 7:00, and I have no idea why. The Oncology outpatient treatment area is across the hall from the Hemato-Oncology one. Usually when I get here at 6:30 there’s 3-4 older gentlemen already waiting to get a number in line for the secretaries. I have no idea when they arrive (I joke that they must have spent the night here to be first), but they’re almost always here, and once they get their number they start a parliament of news analysis and general gossip. Why arrive so early when at the earliest you can start pre-treatment procedures at 7:30? Because this department has outgrown this building a while ago and the new building expansion won’t be ready for 2-3 years yet. That means that there’s a dearth of seating areas for treatment, and and even bigger shortage of good seating areas. When you spend 4-5 hours at least sitting getting treatment getting a good place is a thing. There are two rounds of treatment – the morning one and the noon one. I’m always here in the morning, and if I don’t get here by 6:45 at the latest, I’ll be 10-11th in line and with little chance for a decent spot. You snooze, you lose. Although this time, maybe because of the weather, I’m the first one here.
6:50 – I’m the first in line! The parliament of elderly gentlemen arrived, but arrived later than usual. A lot of sour faces that I beat them to the punch. 😂 As usual, I’m the youngest person around by a pretty large margin. I only once saw a person my age getting treatment while I was here.
7:47 – got my IV in (from a fantastic nurse), blood test done, got a great seating place (private and near a window), and I’m now waiting for my blood test results and to see my fantastic doctor.
8:10 – The usual technician that analyses blood tests isn’t here, so my blood work is delayed. It’s going to take a while.
8:20 – My blood test results are back and they’re good enough for me to get treatment. Yay! Going into the doctor’s office. My brother is saving my seat downstairs, and will be my escort for today. There’s a 30 minute interval where I’m not allowed to move, and during that time I need someone at my side to help me out and call the nurses if they’re busy and don’t hear the call bell to change IV bags. Also, I need help in general once I’ve started the treatment, and it’s nice having someone around to talk to.
There’s a festive feeling now that it’s the final treatment.
8:30 – done at the doctor’s office, and brought my prescription to the nurses. Took my Akynzeo pill, which is a strong anti-emetic with an effect that lasts for 5 days.
8:40 – first IV bag starts – 10mg of Dexamethasone (steroids). It used to be 20mg but I asked for it to be lowered during the last three treatments. It’s still a lot of steroids. They serve as an anti-emetic and to help me survive the treatment.
9:05 – first IV bag finished. Spent the time talking with my funny and entertaining brother.
9:10 – it’s not a busy day here, so the pharmacy fulfilled my prescription quickly. They prepare the IV bags for me specifically, on the spot. I get a paracetamol pill (only one, because it’s part of the protocol, nobody is sure why), and two nurses cross check my personal details against what’s printed on the IV bags and is the computer. I get connected to my first chemo IV bag, Adriamicin. It’s a red fluid that can burn my veins if the IV isn’t in properly, so my nurse checks the IV. This and the next bag are given without the use of a machine, just gravity and my veins. I’m not allowed to move while it’s being given.
9:20 – second IV bag, also outside of the machine and of potentially burning chemicals. It’s Vinblastine, which is what causes the neuropathy side effect. I’m also not allowed to move during this. My favourite nurse came to say hi, and congrats for getting to the end of my treatments.
9:30 – Scary IV bags are done. I get a vein wash and am connected to Bleomicin, my third IV bag, this time through a machine. In 10 minutes I can move and go to the bathroom.
9:50- had my first bathroom break. It’s always a bit of sensation because the pee comes out red because of the first chemo bag. I didn’t know that the first time so it kinda freaked me out. I will be getting two litres of water as part of my chemo (the chemicals are diluted in water), and I’ll be drinking at least another 0.5 litre this morning as one of the chemicals really dries my mouth out. That’s on top of the two cups of water and one cup of coffee that I had this morning. So lots of bathroom breaks in my future, though I won’t be documenting them.
10:05 – third bag done. Now waiting for the nurse to change my IV bag. The last chemo IV burns when you get it, so they administer it slowly, and I might need a hot compress on my arm if the vein is narrow.
10:10 – connected to what is hopefully my final chemo bag. Decarbazine.
10:18 – the IV hurts so I get a hot compress (a water IV bag heated in the microwave and placed in a pillowcase) to press to my arm and expand the vein. The alternative is to lower the IV rate, but as it is this bag will take 1.5 hours.
11:00 – still on my last chemo IV bag. There will be a water IV to rinse out my veins in the end. Got my compress reheated, and I’m reading “Harlem Shuffle” on my Kindle. I’m still using only one hand, so the Kindle is the best for reading under the circumstances.
11:30 – finished the fourth and final bag of chemo. Waiting for an IV flush.
11:45 – I’m done. One of the fastest treatments yet. 🎉🎉🎉
The weather started to improve this week, and with it my health. The winds from the East stopped blowing dust in, and the terrible heat and dryness broke, hopefully until summer next year. It finally started raining on Thursday, and as the weather cooled off I could start to clear out and replant my container garden.
This week was the “good” week (i.e. the no Chemo week, where my body gets to recover), even though Sunday and Monday had super hot and dry conditions that made breathing miserable and made my nose bleed (a problem when you’re on blood thinners, as I am). But the weather improved and I started feeling better as I made up for lost sleep and the neuropathy started to gradually subside.
I also got a pneumonia vaccine (I’m eligible because of my Chemo trashed immune system), and another shot to keep my blood count where it should be. I used to be afraid of shots and blood tests when I was little, and leery of them as an adult, but now they’re nothing to me. I’ve been pricked and prodded so many times that I’ve gotten inured to the procedure.
Next week is Chemo 10 of 12, and also when I start scheduling my post Chemo tests.
I finished Hilary Mantel’s “Bring Up the Bodies”. I couldn’t put it down, so I ended up reading it during Chemo instead of starting on something lighter. She really makes Henry the VIII’s court come to life, and Thomas Cromwell is such a fascinating character in a book filled to the brim with fascinating characters. I’m a bit wary about reading the last book in the trilogy, “The Mirror and the Light,” as I’ve been warned that it’s not as good, but I will probably read it eventually.
I started reading James S. A. Corey’s “Cibola Burn” and so far it looks like a fun and engrossing read. They really know how to write entertaining epic science fiction that highlights how the various modern “tribes” of humanity work and how individuals interact with them.
My neuropathy started improving on Wednesday, and so I could backlog the journalling days that I missed. Hopefully I’ll get more writing done this week, but even if I only journal that will be OK considering the condition of my hands and the fact that I need to type with them as I work every day. Sometimes you need to cut yourself some slack.
I wrote my Kanilea dry. I really enjoyed using it, although I still believe that Kanilea pens are overpriced beauties. I bought my pen second-hand on the Pen Addict Slack, but as the message was archived and the pen that I got is no longer made by Kanilea I have no idea what its name is. That’s something for me to figure out.
I wasn’t planning on adding a pen to the rotation, but my Leonardo Momento Zero Grande Mother of Pearl arrived and it was too pretty to sit in a box until I got to it. I was feeling nostalgic so I filled it with Waterman South Sea Blue, a really great and inexpensive ink that has now been renamed to “Inspired Blue” which is not a very descriptive or inspiring name.
Also in rotation: my Esterbrook Estie Seaglass with a Journal nib, filled with Diamine Jack Frost. This pen and nib combination is so much fun to use I may return it to the rotation for a third time in a row once I’ve written it dry.
The Retro 51 Wings of the Monarch fountain pen with a 1.1 stub nib filled with Caran d’Ache Saffron. The pen drags a little as it writes so I may try to smooth the nib out once I’ve written it dry.
PenBBS Year of the Ox, a trusty, workhorse writer filled with Pilot Iroshizuku Ina-Ho.
There was a local shopping event two weeks ago, and I went a little wild buying Lego sets. I’ve started building Legos as a way to relax and clear my head once I go sick, and they’ve been quite a comfort during the past few months. I can’t build them on days with bad neuropathy, but on good days they really cheer me up. I’m working on the Hogwarts Icons Collector’s Edition right now, and Hedwig is absolutely stunning.
Today’s sketchbook page, as part of Liz Steel’s SketchingNow Sketchbook Design course.
Stillman and Birn Beta sketchbook, Schminke watercolours, Lamy fountain pens (Fine, Medium, 1.1 stub), vintage Eagle 4h pencil.
My Pen Chalet exclusive Typewriter Retro 51s arrived this week, and the mint one is a perfect match to my Hermes Baby (and Hermes 2000) typewriter keys. I’m happy that I splurged on this pen and the copper Typewriter edition. They are both utterly unnecessary pens that make me smile without breaking the bank. I have 11 typewriters, but these are the first typewriter themed Retro51s that I’ve bought. I only slightly regret not getting the red one as well.
It was a virtual convention kind of fortnight, and in both cases the pandemic afforded me the opportunity to go to a convention that I normally wouldn’t have been able to attend. The fun and pretty well run one was the Disney Pin Trading 20th anniversary event. I’m not a huge Disney pin trader by far – I have pins from my Disney races and a few others that caught my eye, because I’m so aware of how easily I got fall down that rabbit hole. But I was curious enough about the behind the scenes of pin creation and well aware that is probably going to be my only chance to attend such an event that I enrolled. It was interesting and fun, and a generally well thought out event that didn’t feel like a “we’re doing the same thing only on zoom” kind of thing. I wish that I could say the same about Kubecon, the second convention that I attended. It’s a poster child of how not to run a virtual convention. Still I managed to learn quite a lot from the hours that I squeezed in, and I plan on catching up on more video sessions next week.
This weekend was stormy, so no long run today. I had about a month of perfect running weather so far, and it looks like I may yet make my 2020 running distance stretch goal of 700km run total this year.
In a fit of anger and frustration I created an “obituary” page for 2020 in my journal, but one that listed the bad moments of the year. It ended up taking four pages, but I managed to find something positive about most of the moments and events of the year, so it cheered me up.
TV (or streaming to be exact) has been one of the high points of the past few weeks. I don’t watch much of it, but “Ted Lasso”, and the new seasons of “The Mandalorian” and “Star Trek Discovery” have been great to watch. Also I’ve been playing “Pandemic Legacy Season Zero” and so far it’s excellent and distinctly different from its predecessors.
I decided to upload the pages from my journal entry today, as a sample and perhaps an inspiration for anyone wondering what to journal about. There’s nothing big or grand here, no deep felt angst, just small observations about my day that will bring it back to life later on. I made an effort to make my handwriting neater than it usually is, and I cut out a page of what happened later in the afternoon as it involved a family member suffering an injury and getting hospitalized, and I want to protect their privacy. Otherwise it’s a fairly standard entry. What’s missing is a title (added after the entry is completed and in this case not something I want to share) that summarizes the day. Oftentimes I glue things in instead of drawing something, and sometimes I just write in a rush and the page is just dense, messy handwriting.
I use a Moleskine Large hardcover, in some limited edition or another (in this case Pokemon Charmander), and a gel pen of some kind or another. Today it was the Karas Kustoms Ink v2 rollerball with Uniball UMR-85, my favourite refill. I don’t mind the show through, it helps me get through the fear of the blank page, and there’s no other notebook that has the Moleskine cover and internal design, so after years of futilely trying to replace it with something else, I just shut out the voices of the detractors and allowed myself to enjoy what I love and what works for me. Please do the same.
I finished my Moleskine Sakura journal and started a Moleskine Pokemon Charizard journal a few days ago. It’s always fun to finish a journal, to have a beautiful physical object to hold in your hands, one that is heavy with words and memories.
I started the Sakura journal when we were already quarantined, and the world and my life were getting really strange and pretty stressful. I managed to journal every day until the end of June, which is when I broke my streak and my journaling habit started unravelling.
I usually finish a journal every 3 months or so. This one lasted for double that, because I barely journaled in July and August, and I didn’t journal at all in September. Every day I wanted to sit down and write, but I couldn’t face the added stress of the backlog that I felt the constant urge to make up for.
I stopped writing because of some serious family health issues, and I was so stressed out and tired during it all that I couldn’t pick up a pen at the end of the day and relive everything again. I knew that getting things out on paper would help, but I was overwhelmed.
In October I decided to give myself a break. Forget about the backlog. Leave those months empty, and move on. I went back to journalling, writing twice a day, every day for the past two weeks (once at the tail end of my morning routine, and once before I go to sleep). I also don’t care if I filled two pages (as was my usual standard), a page and a half, or half a page. I write about the little things in my life, and really try to keep it positive, to make journalling a joy again, a point of escape, and not another “let’s enumerate the ways in which the world is terrible these days” exercise. I have enough of that on social media. So far it’s working and I’m having fun. Will it last? I hope so. If not, I’ll take a break and get back to it later. The point is that I’m no longer willing to let journalling become a stressor in my life. It’s either something I enjoy, or something that I don’t do.
In early 2019 I found out that Moleskine had come out with a Sakura Limited Edition that they were selling originally only in Japan. This is not the dark pink/light pink limited edition Sakura that is available as part of their 2020 spring catalog, but a smaller run of notebooks that came out before that. The edition garnered enough interest that it started appearing outside of Japan in Moleskine stores near the end of 2019. After searching for this notebook online with no success, I was surprised to find it in a Moleskine store on Oxford street, London. I try not to buy notebooks abroad, because they can very quickly weigh down your luggage, but I couldn’t pass these by. There were two versions of Limited Edition Sakura in large format, and two pocket ones. I showed some restraint and “only” bought the large ones.
I just finished one journalling notebook and I was casting for the next one to use, when I decided to go for this Sakura one. It was difficult to acquire and expensive, so there was a risk that it would stay in its wrapper forever, but I decided that if anything would cheer me up as I journal through these difficult times it’s this notebook.
The Moleskine Sakura is a cloth covered notebook, with an utterly unique design. There’s an imprint of cherry blossoms over the slightly shimmering pink fabric, and the imprint looks like it’s floating over the fabric cover. The result is a stunning and tactile notebook that looks extremely luxurious. It’s almost too pretty to use.
The fabric is clearly synthetic, and it has some shimmer to it because of that. The imprint on top has part of the fabric’s texture, and I’d venture to say that it was screen printed, but I’m not a screen printing expert so I could very well be wrong. It’s hard to capture how the covers look in person, but it’s as if there’s an invisible layer between the floral print and the fabric cover. The flowers appear to be floating in the air.
Inside the covers the endpapers feature the same print but in monochrome pink and white.
Here are the back endpapers, and Moleskine again gets full points for prints matching perfectly on the back pocket and the back cover.
The back pocket edges are in purple fabric, much like the elastic closure and the bookmark.
The bookmark features a slightly lighter purple than the elastic closure and back pocket.
Like most limited edition Moleskines the Sakura comes with a sticker sheet. This one is of cherry blossoms in white and various shades of pink. It’s a beautiful sheet of stickers, and the washi-like design of the bottom half of the sheet is a very nice touch.
Like all the Moleskines in recent years the paper wrapper features a “side-B” that you can reuse. This one is meant to be a bookmark, and design on it was so fetching, I actually cut it out and faced it with card-stock to make a bookmark that I’m now using.
My completed bookmark:
The Moleskine Sakura is one of the most stunning designs Moleskine has produced in recent years. I’m glad that they’re making a version of this design more widely available, and I really hope to see them utilizing this printing technique for other designs in the future.
A handwritten journal is an artifact in a way that an app can never be. It’s tactile, endlessly flexible, there to be used and customized in every way possible. Tear out pages, glue stuff in, doodle, scribble, sketch and write whatever you wish however you wish. There’s no autocorrect, nothing editing or censuring your words. Analogue journalling is about freedom, flow and pure creativity.
This is my last day journaling in this journal, and tomorrow I’ll write up the last page and start a new one for the thoughts of that day.
Every time I finish a journal, I use the last two pages to summarize what that journal contains and means to me. Analogue journals are fantastic, but they do make searching for old entries a bit of a chore. Luckily I don’t find myself looking for an old entry that often, and if I do the last two pages help me narrow it down to the specific journal, and the dates and titles to the specific entry.
I also like taking the last few pages as a chance to reflect on the time the journal covers and how things have changed (and I have changed) as the time has gone by. There’s usually about three months in each journal, sometimes more, so that’s a good chuck of time to look back on: short enough to make it simple to summarize and contextualize, and yet long enough to have some impact and meaning. This journal contains two trips abroad, my decision to move into a new career path, and a pandemic that wrecked havoc on everyone I know (including me, of course). That’s quite a lot, even for a journal that covers a relatively long span of time (almost 6 months).
It’s also full of bits and pieces that I stuck in, to make the page come to life. So here’s part of the Diamine Inkvent packaging that I glued in after I opened the last window and before I tossed out the box:
Cool clothing tags also sometimes make it in, especially if it’s from a piece of clothing that I really like:
I got a lot of Star Wars themedvinyl stickers as a gift near the end of last year and a lot of them ended in my journal:
Even the silliest of things can be used to brighten up a page:
There are little drawings and illustrations everywhere:
And bits and pieces of washi tape that were leftover from other projects:
The point is, tomorrow I finish another journal, a small analogue memory artifact that is entirely mine. I created it for me and me only, and it was worth every minute I put into it.
If there’s one habit that you can pick up during your time at home these days, pick journaling. You’ll end up getting quite a treasure in the end, and I’d be truly surprised if you won’t enjoy the process.