Happy New Year! May 2022 be better than 2021 in every possible way.
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. 🎉🎉🎉
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).
Resilience. One treatment at a time.
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.
Here’s a photo of this magical place:
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.
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).
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.
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.
Organising my thoughts and processes during these trying and turbulent times. Here are some calming photos to pass the time while I’m processing.