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.

So far, so good

D-day arrived three days ago. I started to take the Cyclophosphamide pills. This is one of the cytotoxic agents that I have to take to kill the cancer cells. The other two are Methotrexate and 5FU. These are given as 'bolus injections' at the Cancer Centre. The treatment is in cycles of three weeks, as follows:
Week 1 - Methotraxate+5FCU+Cyclophosphamide 4 pills taken orally daily for 14 days.
Week 2 - 5FU+continue Cyclophosphamide.
Week 3 - rest - no cytotoxic agents.

At least, that was the original plan. With the bad reaction I had to Cycle 1, the protocol has been changed. I have to take only three pills for 14 days.  But that will end on June 4th, the day I start Cycle 2, so I am not quite sure just how it's been adjusted. I forgot to ask.

There's just too many things to think about and my mind keeps wondering off the cancer treatment. This time I made the decision not to check on side effects until I don't feel well. Last time I checked the internet when I was in treatment, I found the details of the side effects so frightening that I don't want to face that fear again. My view at the moment is that one has to trust one's team. I do. So, I just go with the flow as far as the medications are concerned.

Mind you, I feel I am a walking pharmacy at the moment.

Normally, I take two types of medication: one for thyroid (which they took out in 1993) and one for blood pressure. Now?  Let me see.  I don't think I'll bore you with all the names, but enough to say that there are two different pills for the stomach, the Cyclophosphamide, and now antibiotics for cellulitis that developed around the peritoneal port they put in while I was in hospital.  This makes drainage a breeze, as I discovered last Tuesday, when I went in to get the inflammation around the port checked and lovely Keith (head of the chemo unit) took one look at me and said: 'It's cellulitis. It happens, so we'll give you antibiotics and, I think we'll drain you too'.

Now, lest you think it's all gloom and doom in the cancer world, let me tell you what happened while I was being drained. First of all, it was really easy. Without the port one would have to wait to go down to ultrasound for the radiologist to check where is the best place for the doctor to insert the drainage tube. The tech marks the place on the abdomen and the patient can't move at all until the drainage tube is inserted by the doctor upstairs in the 'chemo lounge' or the ward. With my 'port' the chemo nurse simply inserted the needle attached to the drainage tube and voila, the fluid was flowing. No waiting.

While the nurse was doing this, a new patient arrived beyond the curtain and I heard, what I thought was a familiar  voice. I thought it was Martha, one of the patients I met 3-4 weeks ago when I first went into emergency to be drained and stayed for a week. She is Greek, with a large, wonderful family. We clicked and decided to keep in touch. I told the nurse that I thought I knew the patient, but didn't want to bother her.  A minute later, a voice comes over the partition: 'Elizabeth, is that you?'  Sure enough, it was Martha.  Last time we talked 3-4 weeks ago was when her mother and sister arrived from Greece. She came to be drained too. With her were her sister, , her husband and her daughter. We had a wonderful, laughter filled afternoon, while I was being drained (it takes a couple of hours) and Martha, who has no 'port', was waiting to be taken to radiology for the ultrasound. When she was gone, the 'visit' countinued with her family.

There are two people I decided to keep in touch with from my two hospital stays in April and May.  Both are amazing women with far more advanced cancers than I have. I am in awe of their resilience in the face of their suffering. I am also delighted to know them, because they are interesting and fun. And it is really important to have normalcy while you go through this cancer journey. Having fun and games is definitely on the agenda. I am really looking forward to having more energy, when I can visit Martha and Marie and play scrabble and exchange jokes. Or, just simply moan together and laugh about it, without being told how brave we are. Laughter is medicine. You have to keep your sense of humour or you may as well just give up. For me, giving up is not an option, so I'll stick to laughter, which comes easily now as I have had no bad side effects yet from the Cyclophosphamide. May it continue so.

What now?

Today I reached a couple of milestones.  I walked to Urban Bites, my resident cafe, which is about three blocks from my house.  It only took 8 minutes, but it's the first time I've been able to reach it since I left the hospital last week. I must have looked a sorry sight, because the waitress, who was new to me, shouted me the coffee. That was nice of her, but boy, did I look that pathetic?

I had a latte, hoping that all that the milk would modify the acidity of the brew. This was my first coffee in weeks, if not months. It tasted fabulous and also cleared the mush from my head. On the way home, I stopped at a manchester shop to buy a mattress protector I've been meaning to buy since I moved. Altogether, I walked 25 minutes! Another milestone.

So, what now, you may ask. Well, yesterday I went to see the Professor. I had a hard time walking and he was really wonderful and didn't mind my asking to lean on his arm while we walked into his office from the waiting room. That's why I love this guy. He may be the head honcho, but he is human - a mensch. He listens and let's me complain when I need to, and in-between he plies me with dreadful jokes that make me laugh. And most of all, he can do a diagnosis the old fashioned way and uses tests to confirm or deny his diagnosis. Just like my Dad did. He told me from the beginning that he suspected exactly what the tests indicated I have.

Yesterday, Prof said I was improving: my blood picture, that is. This means we can continue with the chemo. At my request he changed the class of hormone pills I have to take (the previous ones work through the adrenals and I have enough problems with those, thank you very much). These are called Exemestane. I started taking them yesterday. I have learned one thing. Don't look up any drugs on the internet until you have symptoms that may be side-effects, so I am not giving the URL at this time.

For some reason I had the impression that we were restarting the chemo. This is not so. Evidently, the first one that laid me low was number one and I will have to restart the the Cyclophosphamide pills again on 22 May.

The second cycle will start on 4th June, when they will give me an IV 'bolus' of 5FU and Methotrexate. That's what made me so ill the last time. However, this time my cousin Anna will come up from Melbourne to be with me, in case I have a bad reaction again. I am fervently hoping that I won't.

Concurrent to this 'bolus', I will take the Cyclophosphamide for 14 days, after which I will have a week off from everything, except the hormone pills. And so it will continue, in three week cycles, until Prof is satisfied that the cancer cells are dead and the ascites is gone. Long live the healthy cells!