The Cancer Notebook

My most important notebook is this Rhodia pad:

In the middle of 2018 my mother was hospitalized and then diagnosed with a very serious, advanced, life threatening condition. Six months of constant battle, second, third and fourth opinions, and a lot of reading of medical papers later I managed to pull her out of the “you’re fat and that’s why you’re sick” sinkhole and to get the doctors’ full attention. She was re-diagnosed, this time with two, possibly three, types of cancer. In the end of 2018 my mother was taken off the transplant list and rushed into biological cancer treatment. She had an extremely rare condition, and her doctors didn’t know if the treatment would help. It ended up saving her life, but this is not what this post is about.

This post is about stationery. It contains no pretty templates, no flashy colours, no glitter pens. It’s just a few insights into small, pragmatic little things that I wish someone had told me when my life fell unexpectedly to pieces and I took on a new, additional, full time job: a seriously ill family member’s advocate.

September is childhood cancer awareness month(please donate to St. Jude here). Cancer is not something you plan for but statistically speaking its something that the large majority of us will have to deal with at some point or another. It’s also far from the only serious disease or condition a family member can fall ill to. Here are a few things that I wish I knew going in, stationery related things that would have saved me a lot of time and worry:

  • Get a large folder, larger than you think you’ll need. Find a permanent place for it in your house. If you don’t have a printer, get a printer. This is a must. Print out every test result, doctor’s summary letter, referral, application form, etc related to the disease. You need these in hardcopy (oftentimes more than one copy), as you’ll be bringing them into doctor consultations with you. These things may be digital now, but that’s not good enough. If you go get a second opinion, the doctor may not have access to the computing systems of your previous doctor. You may want to change health providers along the way, and you need to make sure that your new doctor has all the required information at hand. Put CDs with CT, MRI, US, and PET-CT results in that same folder. Make sure that you get a copy on CD of any imaging test you take.
  • Get a simple but good quality writing pad, and a ballpoint or gel ink pen to go with it. I use a staple bound Rhodia 16 pad, with a clip to keep it shut. It needs to be clearly marked as your “doctor notes” notebook. It needs to have a permanent place in your house, just like the folder. Why? Because you never know when you might have to rush to the hospital, and the last thing you need is to waste time searching for your folder and notebook lifeline. Because this notebook will become your lifeline.
  • The ruling on the notebook doesn’t matter, but I really recommend using a top bound notebook, and keeping it very simple and professional looking. You’re going to have enough of an uphill battle, let this notebook be a helpful tool, and not a distraction. I also recommend forgoing pocket style notebooks, or A4 sized notebooks. An A5 size (or equivalent) is best. Why? Because you’ll be using this in doctors’ offices and in hospital waiting rooms, not just while researching things in the comfort of your home. More often than not you’ll be balancing the notebook on your knees, sometimes while standing. You also want to have enough room to write, without being encumbered by a too large notebook. A5 means that you’ll likely devote a page for each doctor’s visit, so all the relevant information will be in front of you when you reference it later.
  • Use a ballpoint or a gel ink pen, don’t use a fountain pen. This is not the time nor place for that. I used the Ti Arto for most of my notes. Why? Because I easily wipe it clean with alcohol wipes after each visit to the hospital, because it’s dependable and not flashy, and because it doesn’t have a click mechanism, so I can’t fidget with it.
  • Take the notebook with you to every doctor’s visit, every exam, every consultation, every hospitalization. Take notes of EVERYTHING. What the doctor says, even to themselves or a colleague (write stuff down phonetically and ask for clarification about it later), what books they had on their shelves, how many kids they have and what their name is (part of your job as advocate is to remind the overworked doctor in front of you that your family member is a person. A good way to do that is to treat the doctor as one too.), what is the name of the secretaries, tips that you get from other patients (be extra nice in waiting rooms: there’s a mine of information around you), information about aid and support programs, names of other doctors, nurses that the best at taking blood tests, physical therapists that are extra patient and positive, etc. There will be times where doctors tell you that you don’t have to write everything down, they’ll write it in the summary letter for you. Smile kindly at them and continue to write. They’ll never write down everything that you will, trust me on this.
  • Refer back to this notebook when you’re at home. Use it to help with any research you’re doing (patient rights, finding support groups, finding other doctors to consult with, etc), to help you keep track of what was said when at which doctor’s office, and to generally keep you grounded. Also, if you didn’t have time to write everything down when you were in the doctor’s office, write down what you missed as soon as you get home.
  • Use it to vent. The back pages of my notebook are full of curses. That may or may not work for you, but it certainly helped me not lose my mind during the darkest hours of my mother’s ordeal.
  • Don’t forget digital tools. You’re going to need a spreadsheet to track the family member’s weight and crucial, disease indicating test results. Which results are important to track? It depends on the disease, and that’s what your notebook is for. As soon as possible get that information from the doctor, and write it down. Don’t trust them to do the day to day tracking for you – they have hundreds, sometimes thousands of other patients. Track whatever is crucial yourself, and raise flags with your doctor when things change.
  • Don’t forget to share the information in your notebook with others (if your family member approves, of course).
The Cancer Notebook

Broken Lamps and New Pens

My little cat (I have two, a little black and white cat, and big black cat) managed to drop a desktop table sharpener on my banker’s lamp and it cracked the glass lampshade clear in half. So I had an interesting but unexpected project today: I bought a replacement lamp shade and took the lamp apart to get rid of the broken glass pieces. A youtube video and a Philips screwdriver took care of the taking apart bit; let’s just hope that I can put it back together again.

Broken shade halfway through dismantling.

I got my Battleworn INK 2.0 Karas Kustoms grab bag rollerballs today. This was my first Karas Kustoms grab bag and my first ink rollerball and I’m very pleased with both the colours that I got and the way the INK 2.0s look and feel. These are chunky but relatively light pens, and I look forward to using them and maybe reviewing them in the future.

Karas Kustoms Battleworn INK 2.0 purple and cyan.

The INK 2.0 uses the Pilot G2 LG2RF refills, which are larger than the usual G2 refills, and built a little different. I haven’t yet tried to swap them out for a different refill, but I suspect that they won’t accept my beloved Uni-ball UMR-85, which is something I was aware of ahead of time.

These are the pens and some of the notebooks that I’ve been using today (I’m not getting much fountain pen use lately): my beloved Orange Crush Spoke pen, and the new purple Karas Kustoms Battleworn INK 2.0 rollerball.

These two pens look great together. Spoke on the left, INK 2.0 on the right.

Field notes came out with a new addition to their National Parks series, which I’ll probably pick up on my next purchase there. They’ve got an offer for a free decal for purchases made by the 30th of August if that speaks to you.

Broken Lamps and New Pens

A Pen Hack, a Field Notes and the Hi-Tech C

I had an issue with my Ti2 Techliner where my favourite gel ink refill (the Uni-ball UMR-85) and basically all gel ink refills dried out and stopped writing a few words after I uncapped the pen. While ballpoint refills like the Jetstream faired better, they also would “fade out” after a few lines, and then, after some coaxing, return to normal. It couldn’t be that the refill was drying out, as after capping the pen, it wrote well enough again for a few words. It was a refill problem, as the same refill wrote perfectly fine in a different pen.

I tried searching for answers and asked around in the Pen Addict slack but got no answers. It was frustrating, since I liked the pen, but couldn’t use it because it wouldn’t work with my preferred refills. I had a feeling that the magnet at the tip of the pen was what was causing the ink flow issue, but it only yesterday did I figure out how to bypass the very thing that was holding the pen together.

What I did was change the order of the parts in the front section of the pen. The original order was refill, plastic spacer, red o-ring, magnet and then the section screwed over that. What I did was reverse the o-ring and the magnet so now it’s: refill, plastic spacer, magnet, red o-ring, and then the section. The result is kind of pleasing to the eye, and more importantly it fixed the flow problem completely, and now I can actually use this fetching pen.

You can see the red o-ring around the tip of the pen.

I tend not to review Field Notes because they arrive so late to me (due to postal issues, not Field Notes issues) that it seems irrelevant to review last quarter’s edition when everyone already has the new one at hand. Covid-19 has made the postal problems even worse, and so only now, and after contacting the wonderful Field Notes people and getting a reshipment, have my Vignette notebooks arrived.

What also arrived were my Field Notes Rooster 2020 notebooks, which are part of Field Notes’ yearly sponsorship of the Morning News and the Tournament of Books. I read all of the books in the Tournament of Books shortlist this year, for the second year in a row. I didn’t post reviews of them all in this site as I didn’t enjoy the last 3-4 books, and I didn’t feel like posting negative review after negative review.

I did, however, love this year’s Field Notes Rooster special edition notebook, and it is by far my favourite Rooster special edition notebook that Field Notes ever issued. It is a squared notebook, and not lined, for the first time ever, and the bold red and black print on the cover is much more striking than their usual craft or cream choices for this series.

Bold, bright colours on the cover.

The fact that these notebooks (sold as singles, with the proceeds going to literacy related charities) arrived so late means that I have a had a few months to think about the Tournament of Books 2020 reading list.

Squared notebook.

I enjoyed the 2019 reading list more, but the 2020 list was overall a good, interesting list of contemporary writing that I for the most part would not have read otherwise. There were a few mediocre books on it, and a few that I really disliked, but as a whole it wasn’t a bad list. I may try reading next year’s list too.

The list. There are 18 books on the list, 4 books that I though weren’t worth reading, of them two were a silly, bloated waste of time and two were infuriatingly bad. There were 7 books that I thought were real gems.

I wrote a few weeks back that I was struggling with my notebook setup, and things have changed since then. I’ve settled on using a blank large Moleskine hardcover in Reef Blue and a Pilot Hi-Tech C 0.4 for a running list of work projects and related notes.

I’ve customized the cover with a Star Wars decal to make it pop and let me easily identify it.

I use the right hand side for a running tasks per project (I still manage major project points in the Things app), and the left hand side for related points, reminders and ideas. Each project has at least one spread, and I drop in pages with ideas and things to remember in between the project pages.

The Pilot Hi-Tec-C (also known as the G-Tec-C4) is not a pen that I would recommend because it’s so very delicate and unreliable, but I used to be a fan years ago, and in a burst of nostalgia (and against my better judgement) I’ve gone back to using these pens. There’s something about the barrel design of this pen, combined with it’s needle tip that makes me enjoy writing with it. Again, I wouldn’t recommend it, as you’ll rarely see a refill through (the tip will bend, or it will become to scratchy to use, or it will dry out and become unusable) and in general the Uni-ball Signo DX are much better 0.4 tipped gel ink pens. But the heart wants what the heart wants, and this is what I prefer for daily work use right now.

A Pen Hack, a Field Notes and the Hi-Tech C

Henry the Pen Man

Find out more about Henry here on his site, and here on the famous “Has anyone heard of Henry Simpole” threads (one and two) on the Fountain Pen Network. Henry’s moniker was Truffle Finder. People are writing kind words and their memories of time spent with Henry here.

This is my favourite Henry story, and if you’re remotely interested in Esterbrook you should give it a read.

Read here about the Jasmin pen. I’ve attached photos of mine below.

You can see both Henry’s beautiful work and his hallmark here.

Henry the Pen Man

Some Thoughts on Productivity Systems

In the beginning of the month I started working in a new team, in a new career path, in a new technical job, under new circumstances. After working for two and a half months from home, I now work half a week at home and half a week at work, in a pretty empty office. I haven’t met all my team members, as we work in separate “capsules,” ensuring that if one of us got sick at least 50% of us would remain unaffected and capable of working. After 17 years of being a Mainframe system programmer, I’m now a DevOps engineer. I’ve been training for the past six months for it, and I love the work, but it’s still not the easiest switch to make. I have a new set of managers, with a new management style, and my old job keeps calling on me, which results in some wild context switching.

And meanwhile the world is burning, as incredible stupid leaders worldwide decide that their pockets are worth more than other people’s lives.

I’m not a huge fan of change, and so my productivity systems tend to stay around with me for years. During the early days of the pandemic, when I just started working from home, I thought that this was temporary. On the second week I realized that the mess of notes in whatever writing pad was around would need to change. And my mindset would need to change.

I wasn’t in Kansas anymore.

I tried to replicate my old work setup at first (a large Moleskine squared hardcover with only the daily todo part of bullet journalling), keeping my home setup intact (a Field Notes with a running todo, lists, trackers etc). That held until I realized that I was starting a new job in a place that moved at a completely different pace than what I was used to. I was also no longer a manager, so the focus of my work was different. I needed to tear everything down and start over again.

I went back to digital task management. I’d tried OmniFocus for a while two years ago and didn’t like its complexity. I had used Things for a good long while before that but stopped and change back to a paper notebook once I decided that I had to have a physical barrier between work and home to have any balance in my life. Those were wild times, and I’m glad that I made that choice, but now it was time to bring Things back into my life. I’ve been using it since the 1st of June, and while it isn’t yet 100% set up to perfection, it’s working well so far.

I’m now managing both work and home from Things, because I can’t handle the added hassle of remembering to lug which notebook where every day, especially now, when I’m not yet set up in my new place. I also don’t realistically think that I could have kept track of my work in a paper notebook right now. I’ve “outgrown” it.

The issue is that I still love paper notebooks, and I still love writing with pen and pencil on a piece of paper. I still keep a pad next to me when I work and scribble ideas on it, but this switch has dwindled down my daily stationery use significantly.

As I was clearing my old desk I found physical evidence of all my years of work there: notebooks full of todos, meeting notes, project notes, ideas and problem solving pointers. I could see the work that I’ve put in. My new system is searchable, but it’s still an amorphous pile of bits somewhere in the Cloud.

I don’t recommend this eraser. It’s just one that makes me smile.

When I went into quarantine I had an inexplicable yearning to get back to the first ever real productivity system I used, the PigPogPDA. I loved my Moleskine pocket plain reporter notebooks, set up just right, full of all the important information that I might ever need. I had shopping lists, trackers, drawings, story ideas, directions, packing lists, cheat sheets in those notebooks: they were my everything at the time. I also remember how terribly expensive they were for me, and how difficult to obtain. Every page was precious, and I had to be careful not to waste any. I used the Hi-Tec-C and the Staedler Mars technico lead holder for that, and these little notebooks lasted for ages and travelled the world with me. Only in the past three years have I stopped using them, replacing them with a much simpler system in Field Notes pocket notebooks. Out of nostalgia I brought one back to life. It has done a lot to cheer me up and give me a sense of stability during these hectic times. Yes, I know it’s just a notebook. Sometimes “just a notebook” is all it takes.

If I have any advice to offer it’s this: be kind to yourself and pick whichever system works for you, and doesn’t make you work for it. Pick something that you’ll enjoy using. If it’s a sleek app, let it be a sleek app. You’ll find use for the notebooks in your cupboard eventually. If it’s notebooks, then make them entirely your own. That’s the joy of using paper planning anyway. And don’t be shy of saying: “This doesn’t work for me anymore”.

So I’m back to digital planning, and I’m going to find a way to have fun with my pens and paper somehow (I still journal and draw and write after all). This is something that’s likely to change as the times do, my work and my life circumstances do. So long as I don’t fall into the trap of Productivity Pr0n and forget what all this is in service of, I’m fine.

I’m fine.

Some Thoughts on Productivity Systems

New Year’s Resolutions Update

So back in the beginning of February I published a post about how I use my notebooks to manage my “New Year’s Resolutions” (i.e. yearly goals) in the hope that it will help people craft SMART goals for themselves that they can actually achieve. I explained in that post that I use a “stretch goal system” that allows me to hit my goals if I put in some basic regular effort into them, and then push myself gradually as I see how the year develops. For each “stretchable” goal I tailor the stretch goals based on my performance in previous years, and based on where I want to put more effort in any given year.

I wrote these goals at the end of 2019, and then, by the end of February and the beginning of March Covid-19 turned my life upside down. More and more restrictive “stay at home” directives have been issued, my travel plans were cancelled, I cancelled my participation in one 10k race, and my participation in the Disneyworld Star Wars Rival Run 5k and 10k races was cancelled, my dentist cancelled my yearly checkup appointment, I started working from home, the last few weeks of my DevOps course moved to remote Zoom lessons, and my planned move to a DevOps team required a bigger struggle than I anticipated. Also, unrelated bad things happened in my family, because that’s how life is.

Never have my stretch goals or resolution planning been tested to such an extreme, and that includes the annus horribilis of 2018.  So how did my resolutions fare?

My messily written 2020 resolutions.

Overall, better than I expected. Here’s the breakdown and some (hopefully helpful) thoughts:

Exercise goals: These were a mixed bag, but they could have been much worse. All my races were cancelled and it appears that there won’t be any races this year. This just means that I had to get back into Virtual Races, and I’ve enrolled into the Disney one (so expensive, but I decided to splurge because it looks like I’ll be saving a lot on racing fees). That will take care of some of my race goals, and I’ll just have to figure out one or two more to take care of the rest. My running at first really hit a snag because of the restrictive lockdown, so I had to learn to run in really tight circles. The plus side? I managed to break my 5k record, and I’m challenging myself to run hills more. My NTC workouts got a huge boost because I’ve been staying at home and Nike has been killing it with some great workouts lately. After the first two weeks of lockdown depression, alone and away from my family, I realized that not exercising was practically killing me. So I’m running and training every single day now, no matter what. I highly recommend the NTC app: it’s free, has great workouts, and a super friendly design.

Writing goals: These took the biggest hit, because of the terribleness of things around here and in the world, and because until April I was swamped with DevOps course work. I’m forcing myself back to writing, and it has been slow, but hopefully it will pick up.

Reading goals: I’ve managed these the best, despite everything, and it’s mostly because reading has been a blessed escape during my darkest hours. I can still completely disappear into a book, and even terrible books give me things other than current affairs to be mad about.

Drawing goals: These also initially took a hit, but I’ve put some effort into them, and with ideas like my “Vengeful Fortress” one I get a drawing, writing and a somewhat D&D-esque game all in one. My drawing classes have been on hiatus since March, and I have no idea when they’ll return.

“Using my stuff” goals: In March and April things got worrying job-wise, so I put shopping on hiatus, and I’m even now careful about stationery shopping sprees. My notebook use needed some rethinking as I started working from home, but I’m back on track now, and using a lot more of the stuff that I’ve purchased. The only downside is that some of my stuff is at work, and right now I have no way of getting to it.

Journaling goals: This has been a rollercoaster in April and this month as well, partly because I was swamped and partly because I was too depressed to write. Trying to get back on track and deal with the feelings of those days that I’ve missed now.

Social goals: These are the only goals that I’m going to utterly have to rethink. Some of them have moved online (board games, meetups), others will just have to be postponed to later this year or to next year.

I’m trying not to be too hard one myself, but also challenge myself to get things done. Past me thought these goals were important, and present me still thinks most of them are. Where an extra effort or some extra creativity needs to happen I’m trying to make that more conscious effort. I’ll see by the end of summer where things shape out and re-tailor everything for what looks to be a difficult winter.

Keep moving, keep looking ahead, take care of yourself and your loved ones, stay at home, and be kind to yourself.

New Year’s Resolutions Update

Journaling: The Last Page

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:

I just ripped out a panel that I liked. This journal is for me, not Instagram, and it can be as messy as I need it to be.

Cool clothing tags also sometimes make it in, especially if it’s from a piece of clothing that I really like:

This tag came of one of my favourite sweatshirts.

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:

See that bleedthrough? It’s fountain pen bleedthrough. I don’t give a damn. If I wanted to write with a Sharpie in here, I’d write with a Sharpie. Use what makes you feel good.

There are little drawings and illustrations everywhere:

Messy, messy handwriting. 

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.

Journaling: The Last Page