The importance of routine

I haven't written for a while, because I've been really busy and preoccupied. After almost a year of not being able to work, I had a call in early August by an old customer if I would write two articles by the end of September - one 500 and the other 2500 words long. I said yes without hesitation. It was only after I've put the phone down that I asked myself: how the..... am I going to do this?

I can't remember if I already explained that I am a writer. I started in 1970, as a Hungarian language broadcaster at the Voice of America in Washington DC, then trained as an English features and documentary writer and moved into various other positions until, in 1987, I ended up as VOA's senior medical writer and worked in that position until I migrated to Australia in 1991 (way back in history, I was a would be bacteriologist, so I had some credentials). Since then, I've been a freelance science/medical/industrial/consumer magazine writer and magazine editor. In 2002, I went back to my first love, writing film documentaries, screenplays, short stories and short dramas for the stage.  None of these have borne much fruit, but not for want of trying. I continued to freelance and also had (still have) an office temping job for when there's a dry season in freelancing. Then, in 2006, the cancer bug hit  and the rest is Boobs Blues history.

So, having caught up on my background, let's get back to the subject at hand. Here I am, sitting next to the phone, wondering how I was going to write 3000 words in about six weeks, with a 4-week chemo cycle (during which I will be 'brainless' for two weeks) and not being able to drive long distances to do interviews. This is where years' of the habitual routine of being a journalist kicked in.

First of all, I took stock of what I was doing (besides the cancer treatment). At that time I was just gearing up to take a Massive Open Online Course (MOOC) in Data Driven Journalism offered by the Knight Centre for Journalism in the Americas at the University of Texas in Austin. I knew nothing about the subject, but was hoping it would help me organise the data I was collecting for an essay on asylum seekers that I began to work on for a competition from the day Prime Minister Kevin Rudd announced his PNG Policy. This new policy would send asylum seekers coming to Australia by boat to Papua New Guinea for processing.  It's a very controversial subject that I won't go into here, just to say that I totally oppose it.

So, here I was submerged in two projects already when the phone call came. Which to drop? The essay went on the back-burner, except for keeping track of media reports. That was doable with a quick, daily internet search. However, after the first two weeks I dropped the MOOC course as well, but did save all the class notes and discussions for later use.

In the meantime, I scheduled interviews by phone for the two weeks off of my chemo cycle, which was the two weeks after the call came in. As a former radio reporter I am in the habit of recording all my interviews, so this was no exception. I made two recordings of each - one with the iProRecorder app on my iPad and one with the internal mike on my Macbook Pro - in case one got fouled up, as I had no window of opportunity to redo interviews. I transcribed the interviews during the 'brainless' two weeks when I had no energy to think, just do routine tasks. I delivered the 500 word article the day before the next chemo cycle and repeated the routine during the second.  When interviews I was hoping for did not materialise, I did not panic, just did more readings. When the brain didn't work, I rested and relied on my knowledge of how long it would take me to write 2500 words in the shortest time.  I estimated two days. At the end I did it and submitted the article on the day of my next chemo, but it was really pushing it. Had I not had the experience, I would not have been able to do it.

So, why am I going into such detail?  Because I am hoping to be helpful to others who may be in a similar situation.  One of the hardest things for me is to find a happy medium between doing too much or too little. Having no full-time employment doesn't help. I have to keep to long-established routines that need self motivation. How can you be motivated when your eyes are blurry, your head is spinning as you stand up, and you wobble when you walk from your bed to your computer desk? Not to mention the nausea pills, double vision, etc.

Journalists keep daily notebooks on what they do and think, writers do the same for ideas and notes. I modified this by writing down every day certain aspects of the treatment (pills taken, side effects, etc) and organising a To Do list at the end of every day. This includes everything, not just 'work'. During the day, when I can't remember what I did two hours before, I check the list and see if it has been ticked off. Routine.

If I have some ideas, these also go in the notebook, whose pages I number. I create a Content page at the end of the book. I do this by sitting down at the end of every week to see what are the important things I have to remember from all these notes and put them down next to the page number. This way, when I want to see what I noted during the article research, it's right there and I don't have to flick through every page.

As I write this, I have four more days of taking cyclophosphamide pills in this current chemo cycle, which has been particularly tough. I haven't been feeling well at all. Finishing that long article seems years away already. For the past two days I've been a TV couch potato, watching 5 episodes of Beauty and the Beast each day. It made me forget the discomfort of my body.  Today, the body is better and I watched only one episode, which I found too much.  It's not going to be a favourite show, it seems. Amazing how one's taste changes with being ill. But it served it purpose and now that I am coming towards the end of these hard two weeks, I look forward to the next two when my brain will be working and I can power ahead with my 3000+ word essay. Relying on my proven routines, I am sure I will make the deadline, which is two months away. I can hardly wait.

One step forward, one step back

It's been a very strange day. The last day of this particular two week chemo cycle, which was rougher than the last one. My eyes were a real worry. I noticed that my vision got worse just after I took the cyclophosphamide pills. It was hard to focus without the eye-patch for much of the day. So, I did a little research. I googled both the cyclophosphamide and the 5FU. I seemed to recall both had visual disturbance as a side effect.

What would we do without Google?

Well. we could turn to ask.com.

I guess there isn't much difference between them, because both came up with the same answer for 5FU - 11.5% people treated with it reported blurred vision.

Another study on cyclophosphamide found that after 1-6months of treatment 31.58% of people taking cyclophosphamide suffered some form of medium blurred vision, including those who were also treated with methotrexate.

OK, I am not going to go into the statistics, because that's my weakest subject, but the point is that, even with my limited knowledge it's plain to see that the blurring of my vision is the result of taking the chemotherapy drugs.

Naturally,there are other side effects as well. Today, I had a body-full of those too. About a half hour after taking the pills my body became very heavy and I simply could not keep my eyes open.  In the morning, I had plans for working on my assignment, but that was not to be. Not until the late afternoon, when the cyclophosphamide was supposed to have cleared for the day (4-5 hours, according some of the information I've read). Within a short time I was fast asleep and woke up around 2-3 hours later. Well, that's half the day gone, right there.

Then, my eyes wouldn't focus and my head was mush. I couldn't concentrate on anything. So, I gave in and played games on my iPad. What a waste of time. But hey, if my body wants to rest, why not put on the music and let the games begin!  Tomorrow is another day and I will not have to take those damn pills for two weeks! Halleluyah!

Energy blues

Conserving energy has been one of the least mentioned subjects during this cancer treatment and now that I am getting better, I push the boundaries of what is feasible. Today was no exception.

It's been almost a week from the last intravenous chemo and I have pretty much worked out that my energy seems OK in the morning and after 4-5pm when I take the chemo tablets. So, yesterday I made arrangements to have some of my things brought home from storage and downsize the storage unit I rent until I find a friend with a large garage and/or get rid of the stuff I still have stored. The man said he would meet me there 8am sharp. 

I got there a bit early and went through the boxes to see what I want taken home. The man was a bit late and I had time to peruse at my leisure. And when he arrived, he was charming, he was energetic, he was the exact opposite of how I was feeling. A breath of fresh air. 'No worries' - says he and starts to lift the heavy boxes. Me, I am wilting. My head is woozy and I start to worry how I am going to drive home. I realised I should have asked someone to come with me. I start to dial and message strong men - young and old - who may be around to help. Nope. Only answering machines. What to do? I leave the young man to do his thing and sit down in the office. Waiting. Waiting for what?

The mobile rings. My rescuer. My knight in shining armour for today. By this time I am ready to throw everything out and when the young man says he can take things to recycle, I just wave a royal wave. Do it! It's only later I discover I waved away a few things I wanted to keep. Mea Culpa.

We make it home safe, I pay, my knights leave.  I crash on the bed. My phone starts ringing. My brother in Florida. Can you Skype?  My mobile phone buzzes a message. Mom, can you Skype? No guys, I am pooped. I can't move. Don't bother me. I take my cyclophosphamide pills and wish I could go to sleep. No way. My brain is alive, my body is walkabout. 

It's 2pm now (4hours later) and I wonder if there's anything on the internet about how to conserve your energy while you are undergoing chemotherapy. Sure there is. Platitudes. 'Save your energy, conserve your energy'. But how? I can't just sit around doing nothing. And nobody seems to be expanding on the 'how?' Or at least I couldn't find anything.

Well, there are ways. Get your family and friends surround you with love and attention. If nobody is physically there, call them, email them, tweet them. They would love to hear from you - either to entertain you while you are comfortably wilting on your bed, or to offer to come around and make you some tea or coffee. Only accept personal appearance from people you know well, for whom you don't have to put on an act and with whom you are comfortable just being quiet or reading side by side, or watching TV. The others take up too much energy.

What else? We are having an election campaign here in Australia. It's deafeningly boring, or rather disheartening. There's not much difference between the major parties, both have some outstandingly stupid policies. I won't say no more. We have compulsory voting here, so we have to vote. A conundrum. So, for the past week I have deliberately not watched the news, just caught up once a day on the web. Big conservation of energy!

Best of all, have fun. Watch funny movies and laugh a lot with your loved ones. Even if it's just about your cancer. Big easing of tensions and worry all around. Since my son lives overseas, one of my solutions is to txt him, especially at night when everyone around me is asleep, that I am feeling down and need a joke. I have to say that I get some doozies. During daytime, I've been know to call friends with the same request and we end up with big guffaws. Yes, there's laughter in cancer. It's the best way to conserve energy, the best medicine of all (and if you really want to laugh, read this medical description of what 'humour therapy' can do for you)!

Dark after light

Didn't have to wait long to see how things go this time. It's the next day from the previous post and I am crashing - hard. Had a sleepless night last night. Was up two hours without being able to go back to sleep. That's from the steroids they pump into you with the inravenous methotrexate and 5 FU.

Now, I am having problems. My eyes are blurred, I am dizzy and my mouth is burning from the cyclophosphamide pills. That will go soon, I know from experience, but I am not sure how long I'll have to fight the dizziness. I find that if I focus on mental things then somehow the physical hardship is more bearable. I don't want to sleep during the day, because I don't want to lose total control of my day. Of course, I may have to. I'll just wait and see. For now, I'll try and do my classwork before friends drop by...

Forget the class work. It's 4-5 hours later. My friends have come and gone and I had a chat with another one on the phone. I thought I was ready to take a nap, but no. I can't get settled - on or off the bed. I have to keep moving, but doing what? My body is shaking internally and I am not balanced. I am worried I might fall over if I go for a walk....

I had a lovely, light lunch. Body seems a bit better. Head still fuzzy. Maybe watch some TV or listen to music? Very listless, jittery. A chemo frenzy? Been there before. It will pass.

It's quite amazing how fast one forgets the unpleasantness of chemotherapy. Maybe just as well. Maybe the body is programmed to recover and that's how people going through major physical and psychological traumas can actually recover and lead productive lives.  My mind wonders. Time to rest. The body will take care of itself.

Taking it in stride

This was a good week. I was feeling well and focused on my writing. I finished the web story on deadline and delivered it Wednesday morning, before the start of THE BIG DAY – my appointment with the Professor.

The Professor looked dapper and suntanned after his sporting holiday in Italy and he had good news for me. My cancer markers are down, which means that the treatment is working. My white blood cells are back to normal, so we can have treatment. And, last but not least, all my various organs, like liver and kidney, are working fine. Phew! It was good to hear. But then, there was a down side.

I am not out of the woods yet and the Professor could not tell me how long I have to have chemo treatment, which has been adjusted to my current status. Instead of a three week cycle, we now have a four week cycle. Two weeks on, two weeks off . This will go on until I leave for a planned, six week vacation with my family in the US in November.  On my return, there will be a reassessment and we shall see.

So, the way I see it, at present my best option is to settle in for the long haul and treat this as a quasi chronic disease and get on with my life. The question that remains is how to do that.

Until now, I had the philosophy of taking one day at a time.  I had incredible emergency help from my family, community and government services. This can't go on forever, so I have to plan to re-enter my normal life and earn some money. My current assignments are a good measure whether I am physically and mentally ready to do that.

So far, so good. Yesterday, the day after the intravenous chemo, I was pretty groggy and, even with my wonderful helper, Shoko, I could only get to my local supermarket for a few groceries. Today, however, I was quite all right. I mean, better. I went for a walk and was still dizzy, and my eyesight has been shoking today, but my head is clear and the dreaded chemobrain is still at bay (I do my brain exercises every morning in the hope that the dreaded fog will never rise this time).

Another thing I started to do is to organise my exercise regimen.  On Monday, I went to the gym and got assessed for gentle strengthening exercises. I am going to see if I can go back this weekend, or latest Monday.

Everything at the moment is trial and error. I don't know what my abilities and limitations are for the two weeks of chemo treatment. That is the next lesson to learn during this particular cycle.

And talking about learning. The only thing that suffered this week was my studies. I have only done about the third of the assignments, if that. Tomorrow I'll focus on catching up and see if I can make up what I've missed so far.  In order to get a certificate, I have to pass a quiz each week. So far I got 80% and 90% for the first two weeks respectively. Now we are getting to the end of the third week and I have two more to go. Let's see what I can do. If I make it, I'll definitely be superwoman! If not, well, I've tried. It's still a triumph in my eyes. What do you think?

Time flies

Time flies when you are busy. I've been very busy ignoring the fact that I am having chemotherapy next Wednesday. It's been great fun feeling increasingly more healthy and being able to do small things, like walking down the street to the local cinema and/or going out at night. The best gift has been that my brain remains unaffected, so when the call came for a freelance commission, I could honestly say: 'yes, I'll do it.'

As a result, I now have projects coming out of my ears. I am still doing the online Data Driven Journalism course that I think should help me with my essay, but the essay is now on the backburner.

I've been commissioned to write something for the 25th anniversary of STARTTS, the NSW Service for the Treatment and Rehabilitation of Torture and Trauma Survivors. As you may guess from the name, this organisation deals with refugees and asylum seekers. I've been associated with them, both in a volunteer and professional capacity, since 2007, when I participated in their Sharing our Stories, Sharing our Strengths conference. In 2008 I wrote and essay for their 20th anniversary. About ten days ago they contacted me if I'd do a reprise and write again for their 25th anniversary. This is the most amazing organisation (and they pay well), so I immediately said yes. It's been a wonderful week, being back in my journalist stride, interviewing, thinking story. I completely forgot about the looming chemo.

Today I came down to earth. I had some bureaucratic stuff to sort out with my energy supplier, who have been shamelessly overcharging me.  I completely fell apart. I can't take indifference, it seems. Not to mention indifferent bureaucracies. They want my money, but offer no service.

What happened to THE CUSTOMER IS ALWAYS RIGHT?  It seems to have gone the way of the dodo. Nowadays the customer has no rights, no say-so, just to hand over the money for service or goods, no matter how shoddy they are. There must be a way to get back at them, but I sure can't think of anything now - except not buy anything. Well, that's not hard, as I don't have much money to spend. Maybe that's why they don't care.

Ah well, I did find one solution to get them moving.  Follow my own advice to my mother, burst into tears and tell them I am on chemotherapy and can't cope. Amazing how fast things get done!

My mother (may she rest in peace) was the type of person who never wanted to burden anyone with her problems. One time she had a particularly unhappy altercation with bureaucracy and she was really upset, crying her eyes out at home. I told her: 'Mom, don't cry at home, cry where it counts. Cry in the office of the idiot who is giving you the runaround.' She did and was amazed how fast she got results. Amazing how smart I was when I was younger, healthy and cocky, but I am not sure I like taking my own medicine. I've had enough of crying. Truly.

Brain matters

Yesterday was a perfect, sunny, spring day and the weatherman promises the same for all next week. Yet, we are still in the winter season here in the Southern Hemisphere. Yesterday it was over 20C and it is expected to be up to 24C tomorrow. It's very welcome as I walk more and more to improve my physical strength. I try to walk every day when the weather is good and I am signing up for the gym next week if I remember to get a doctor's certificate to exercise.

Last week I forgot, what with all the things I had to discuss about my visit to the eye hospital. This coming week I have to have a blood test for diabetes, and then the only test remaining is an MRI to rule out vascular problems in the brain.  I am pretty sure that will be clear too, as my brain is the only part of me that seems to function as well, if not better, than before this current visit from my cancer monster.

My brain. I think I may have mentioned before that I had post chemotherapy cognitive disfunction, or chemobrain, for at least three or four years after my first chemotherapy in 2006-7. It was a nightmare. This time I am foggy while I take the cyclophosphamide pills, but as soon as I stop the fog clears and I can think clearly. What joy!

Since I am chemo free for most of this month, I am focusing on my writing. This time I am thinking of entering the Calibre essay competition ran by the Australian Book Review. I started the research two weeks ago and am really fired up, as I know I have only until 28 August before the fog descends for another two weeks (if my blood test is OK, that is).

I find the chemo much more manageable now that I can plan my activities. I seem to take things in stride. I focus on seeing my friends and doing my research. I do my brain exercises every day and try to do creative writing exercises as often as I can as well for this month. I have to be careful not to overdo things, which I have a terrible tendency for. Tomorrow, I am starting an online course in Data Journalism. I am hoping it will help me with mining the data I am collecting for my essay.

So, there's method to my madness, but I still have to watch that I do only as much as my energy allows. And this is my challenge for now: to do what I love to do, but stay within the constraints dictated by my health. I think that's one of the hardest lessons to learn in this journey.