While I was taking a walk a few days ago I saw this tree branch grow out of a tiny crack in a solid stone wall and I was impressed enough by its tenacity and resilience to draw it. By chance this drawing is on the opposite page of the one I made for my last health update, which seems appropriate.
I underwent a PET CT on the 9th of September, and thankfully the results were good. The treatment is working, kicking my cancer’s ass and not just making me feel bad. I went through another round of Chemo on the 12th, my fifth round so far, and the side effects are stronger and taking longer to fade away between sessions. This is to be expected, as the Chemo’s effects are cumulative, but I’ve decided to be like that tree: resilient. I’m making minor adjustments to get me through the post-Chemo days, working out ways to help me ride out the pain and unpleasantness of the worst of the side effects. It’s hard to pick up a pen or brush in the first days after treatment, and I sometimes lose fine motor control. So I’m using larger and lighter pens, and I take photos of things that I want to draw instead of working on location. At home I can take my time while sketching, take breaks, experiment with looser drawing. The drawing above isn’t large or complicated, but it took me two days to complete (one for line work and one for the watercolour).
It’s been a while since my last update, so I thought that I’d write a new one. On August 24th I had my fourth chemo treatment, and it went rougher than the ones before it in terms of side effects. The worst of the bunch has been my neuropathy, which until now has been not so bad. This time however, both my hands were numb and tingly, and the tips of my fingers actually hurt. It’s been hard typing, holding a pen, drawing. It’s not that I’ve stopped doing these things, it’s just that it’s been a challenge to overcome the pain, to focus more to get my hands moving the way that I want them to. But I haven’t given up, and I’ve managed to type, write with my pens, and even create this drawing:
Not bad for someone with semi functioning fingers, right?
My hands have gotten better with time, but they are getting better slowly, and they still haven’t returned to normal. I’ve discovered that lighter fountain pens with bigger barrels are the best in terms of being easy on my hands, and although my handwriting has suffered a bit due to the pain, it is still recognizably my handwriting.
What’s next? On Thursday I have a PET CT which will determine what the rest of my chemo treatment will be, and on Sunday I’ll have the fifth chemo treatment. I’m not looking forward to either of these things, and as the PET CT is approaching my anxiety levels are rising (I really need good results on it). Meanwhile I’m trying to distract myself with work, books and season 2 of “Ted Lasso”. Here’s hoping for good results, and less pain for the Jewish New Year.
In the middle of London’s West End there’s a beautiful secret garden, the Phoenix Garden. Ever since I accidentally discovered it, it has been my number one favourite place in London. There’s something about the green and the peaceful quiet in the middle of one of London’s busiest areas that is mesmerizing. During the rough parts of my latest hospitalizations I shut my eyes and transported myself to my favourite bench there.
So I decided to create a very quick sketch of one of the benches there, and try to work on my plant textures. This is clearly something that I still need to work on, but it’s good to know where I started.
Since my last post on the subject about a month has passed, and boy did a lot happen during that month.
The super traumatic biopsy I went through didn’t yield results, so I had to be hospitalized again (for the third time) to get a mediastinal biopsy under full anaesthesia. My first ever operation.
The procedure went well, but my recovery took more time than planned, and the results of the biopsy took two weeks to arrive (hello, Grey’s Anatomy with your very realistic “8 minutes for a biopsy result”). By the time the results arrived I had more and more difficulty breathing, to the point where on the day of their arrival I came into the hospital to be hospitalized for the fourth time, this time because I just couldn’t breath.
I never thought about my breath so much as I did during those few days. I was connected to oxygen and pumped full of steroids and still had to consciously think and struggle for each breath, for every inhale and exhale. You can’t talk, you can’t sleep, you can barely eat, you just breath, breath, breath.
Luckily the biopsy results were better than any of us could anticipate: I have Classic Hodgkin’s Lymphoma. It’s very treatable, and though it requires chemotherapy, the course is less intense than I had anticipated.
Two days after my biopsy results arrived I got my first chemotherapy treatment (ABVD, for those interested), and an hour and a half after treatment I could breath independently. I didn’t need oxygen. I could speak in whole sentences. I could be released home.
I have a chemotherapy treatment every two weeks. I’m slowly rebuilding my routine around those treatments, and so hope to start posting more often now that my life isn’t a complete chaos of hospital/home/hospital/home. There are things that I won’t be able to do for a long while (such as running, which is a heartache), but luckily most of my hobbies and all of my work are things that I can do indoors, at a computer or a desk.
Take a good, long, deep breath for me and appreciate it. It really is precious.
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.
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).
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.
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.
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?
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.
Things have been tough lately and I haven’t been in the mood to draw anything, write anything, post anything. So I decided to make myself create something, as silly and small as it could turn out to be, just to see if I can draw myself out of the funk.
I dug into my largest art and stationery supply drawer, and picked out three random items: a Koh-I-Noor Magic pencil, a TWSBI Jr Pagoda 0.7 mechanical pencil, and a Pilot Juice Up 0.4 in blue ink. Nothing good could come out of this random draw, I thought to myself, but I’ll draw something anyway:
The Koh-I-Noor Magic pencil comes in many varieties, some of the actually pragmatic. This Magic pencil is just ridiculous. It’s a giant, glittery, neon mess that makes me smile.
The TWSBI Jr Pagoda is a solid mechanical pencil, but in the battle against the Uni-ball Kuru Toga or any kind of drafting pencil it is always going to lose. I enjoyed using this underdog, and I think that design-wise it’s a very good mechanical pencil.
The Pilot Juice Up is excellent, and Pilot should replace all of its Hi-Tec-C pens with this refill (and perhaps even with this design). The refill gives Uni-ball gel refills a run for their money, and the barrel design is both sleek and ergonomic. This is a phenomenal pen that I really need to use more.
This turned out to be a fun exercise in creativity, and it made me smile for a bit. Will I do it again? Perhaps, perhaps, perhaps.