Tag: cancer

An Update on My Health

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.

View of succulents and other plants with the sea in the background.
I have to replace my runs with walks now, but luckily I live in a place with nice walking views.

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.

I Have a Tumour

I debated whether to write this post or not, and whether to write it now or wait for later, when I know which tumour I have. In the end I decided to start a post and write what comes out, and not try to overthink it.

I have a tumour in my chest cavity (mediastinal). Back in February this year I was forced to stop running for about two months due to a rather serious bout of Plantar Fasciitis. Due to Covid restrictions I had delayed replacing my insoles, and this was the price pay. After two months of rest, stretching and a course of anti-inflammatory pills I felt better and in the beginning of April I started running again.

Or at least I tried.

I had shortness of breath once I started, to the point where I had to stop running a few times during my run. I thought that it was due to me not running for almost two months. But the runs after that first one didn’t get better and after a few more I went to the doctor.

My GP said that my lungs were clear and he couldn’t hear anything. I told him that I was wheezing at night (at this point I was), and that I found running impossible and walking increasingly difficult. He said that it was a virus that was going around, and prescribed something to help with congestion. It was a 10 day course of tablets, and it did nothing to help with my shortness of breath or my wheezing and coughs.

I knew that something was seriously wrong, and thought that at the age of 39 I may have developed asthma. At this point it was time to fly to London, so I took my mother’s inhaler and went on the trip. I have no idea how I made it through 13-15,000 steps per day for 12 days there, but I did.

Once I returned I went to see my GP again, this time demanding a referral to a spirometry test and and to a lung specialist. Last Thursday I took the spirometry test and the results were abysmal. I had 35% lung capacity, and I scared the technician enough that she tried to do everything possible to get me to see a lung specialist that day. She didn’t succeed but my family managed to book me a to a lung doctor that day. He said that it wasn’t asthma, but he had no idea what it was. I needed to get a CT done.

I took a spirometry test at 13:40. I saw a lung doctor at 16:30. At 18:30 I had a CT angio done (my first CT ever). At 19:10 I had the results in my inbox.

A large mediastinal tumour. Possibly lymphoma.

Me, a healthy, non-smoking, non-drinking, physically active 39 year old.

I was admitted to hospital on Friday, and had a series of tests done, including a super painful, super traumatic biopsy on Sunday. I was released home for a few days of rest on Tuesday, and now, Saturday night, I’m back in hospital waiting for my very first PET CT on Sunday morning.

The hospital

I have no idea how I’m coping. For now I’m in a cloud of uncertainly and with zero control over my life as a phalanx of very good doctors try to figure out exactly what we’re dealing with here. It’s a tumor for sure, the question is which kind exactly. I’m moving around in my life as if it is someone else’s.

I’m back to journalling, after a break due to my mom’s health problems, Covid and several other personal issues. Recording everything as it happens has helped me deal with things. Analogue tools are still best for processing, and even though I would have loved to luxuriate with a Parker 51 on some Tomoe River Paper, I know the practicalities of hospitals enough to use a Karas Kustoms Render K with my favourite refill (Uni-ball UMR-85) and a Moleskine instead.

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).