I went to Adelaide and all I got was pneumonia.
Part of the idea of this blog was to chronicle some of my travels between treatments. Since April this year I have managed to go to the Melbourne International Comedy Festival for the Easter long weekend, had a week in Melbourne, Mornington Peninsula and Phillip Island in May, five days in central Australia and a weekend in Sydney in June – all without incident!
I was supposed to go to the Barossa with a group of friends for a 40th birthday celebration two years ago. But then I got diagnosed with breast cancer.
I still tried to go. My surgical oncologist said it was possible as long as I could promise not to drink more than one alcoholic beverage a day. Sure, I said. She told me my medical oncologist could be flexible around the timing of my treatment so I could get away for a weekend. Excellent, I thought.
However, when I broached the idea with my medical oncologist, she was quick to clip my wings. I tried to make my case that I’d be fine, but I was outnumbered by my oncologist, oncologist’s registrar and breast care nurse all shaking their heads at me. My doctor asked me how far I would be from the nearest hospital. My breast cancer nurse said I would be an hour from the main hospital in Adelaide.
‘What if you get a fever, you can’t be an hour from a hospital if you get a sudden fever,’ my doctor told me. ‘That’s life threatening. And if it’s a week after your treatment, that’s when your white blood cell count is going to be at its lowest and you’re most at risk of infection.’
‘Well, would I be better off having my treatment at the three week cycle on the 20th so the risk of infection is less?’ I asked.
My friend Catherine, who was with me at the appointment, looked at me in horror and later told me she couldn’t believe I was arguing the point. I was just clarifying the situation, I told her.
‘Look, I want you to try to have as normal a life as possible and I can’t stop you going,’ my doctor said. ‘Do you want to cure your cancer or go to the Barossa?’
‘Ok, cure my cancer,’ I said.
‘How about we concentrate on making sure you’re around for your friend’s 50th birthday and you can have a big celebration then,’ my doctor said.
I later discovered there was a hospital in Tanunda about 10 minutes from where my friends were staying for the birthday celebrations, but I was levelheaded and followed my doctor’s advice and didn’t go to the Barossa. But it’s been on my list of things to do this year. So I booked a five-day break in Adelaide, the Barossa and McLaren Vale with my friend Diane. And sure, I had chemotherapy two days before I went away, which meant my white blood cell count would be at its lowest during our break. But when you’re having chemotherapy weekly, when is that not going to happen?
We were having a fabulous time eating and drinking our way around the region. Check out this YouTube clip for proof.
While in the Barossa, I kept thinking about the conversation I had two years ago with my Sydney medical oncologist. For me, completing the trip felt like retribution for not being able to go two years ago. See, I would have been fine. I don’t know what she was so worried about.
Well, obviously getting too cocky and confident comes back to bite you.
On Sunday morning I woke up with a massive headache, very unbalanced and unsteady on my feet, and I started vomiting. I had also had a cough for three days. And a runny nose and a temperature of 38.5 degrees when I woke up.
I had experienced the headache, imbalance and vomiting three weeks earlier a couple of days after my stereotactic radiosurgery on my three new brain lesions. It had been horrible, but controlled by taking a steroid called dexamethasone. I had started on 12mg and had been gradually reducing my dose over the past few weeks.
I guess I tried to reduce my dose too quickly. I don’t like taking them. They wake me up at 2am and I can’t get back to sleep. And sleep is a pretty important medicine at the moment. It also makes my face round and puffy, like a chipmunk squirrelling away nuts for the winter. And it also makes my face hairy, which seems to be balancing out as the chemo is taking my hair away. And they give me leg cramps that wake me up in the middle of the night. Fortunately, it doesn’t seem to give me ‘roid rage, though my family and friends may beg to differ. Or they might not be game to.
I was down to 2mg a day when I went to the Barossa, with the plan to go down to 1.5mg while I was away. There were some warning signs that I probably shouldn’t keep reducing the dose, but I was very determined to get off them as soon as possible. For example, in the days leading up to going away I was having some trouble focusing my eyes and had a bit of double vision. It was at the point that I told Diane it might be safest if she drove while we were in South Australia and I’d navigate.
I went back up to 2mg of steroids after waking up for a headache two days in a row that I wasn’t sure I could blame on wine consumption. I was feeling pretty tired on Saturday afternoon after a day zipping around the Barossa so we went back to our accommodation and I got into bed for a couple of hours. I couldn’t sleep, but I closed my eyes for a while and sometimes I think that’s the next best thing to sleeping, to just give your body a recharge. I also did a bit of Dr Googling about my cough, looking up words like pleural effusion. When you have little tumours in your lungs, it’s good to be on the lookout for any new symptoms. Mine have been mostly symptom-free so far, so I was really hoping this wasn’t the start of a new chapter.
We went for an early dinner and I decided I wouldn’t have any wine with dinner so hopefully I would wake up without a headache the next morning. We were home and in bed early and during the night I started to get a runny nose. This was almost a relief to me. The cough was just part of a cold, I thought to myself. It’s nothing more sinister than that.
The headache woke me up in the early hours of the morning as the steroids woke me out of my slumber. I tried to get back to sleep but the wheezing, crackling and popping on my chest from my cough kept me awake. Eventually, I got back to sleep around 6am, but when I woke just after 7am I knew I might be in trouble because I felt nauseous. I sat on the side of the bed for a while fighting the urge to vomit. I hate to vomit and I’m really good at fighting it off. I pushed it down and headed for the bedroom door, careening down the hallway past Diane in the lounge room, who was packed and ready to go. I felt like I was walking on the moon, taking big, high steps as I tried to retain my balance. Or possibly walking like a Thunderbird marionette. I made it to the toilet. I will not vomit today, I told myself. Success. I went to the bathroom and got my trusty thermometer out. I had taken my temperature before bed and it was 37.5 degrees. Still in the safe zone. But now in the morning it was 38.5 degrees. In the danger zone. And I ran to the toilet and vomited.
I made it back to the lounge room and took some Panadeine and steroids with some dry crackers. If I can control the headache, I can control the vomiting, I thought to myself. But I couldn’t keep the tablets down. They just kept coming back up.
At 9am, Diane went to the local store and chemist for supplies: bucket, cleaning products, disinfectant, tissues, disinfecting wipes, gloves, Panadeine, cold and flu tablets and anti-nausea tablets. This is a good reason why you should travel with someone, particularly a good friend who is willing to clean up your vomit. I should add that Diane also woke up with the flu that day and was shaking and aching all over while carrying out this mission.
On my earlier travels, I packed a lot more medication ‘just in case’, but as I hadn’t used any of it, I had gradually weeded it out so I was just travelling with Panadeine, steroids and thermometer. Yes, I was just asking for trouble.
We had until 11am to get out of our accommodation and it took so long for me to get my act together, we only just made it out before the deadline. Every attempt to move led to a vomit. I knew the Tanunda Hospital was a three minute drive from our accommodation, but our next accommodation was booked at Port Willunga two hours away. I figured I could make it to there and then see how I was feeling. There’d be another hospital nearby if I still felt sick.
So we hopped in the car, Diane driving and me in the passenger seat hugging a bucket in my lap, with one eye open to stop the double vision as we took in the scenery of the Adelaide Hills and McLaren Vale. Once we arrived in Port Willunga, I considered just going to our accommodation and trying to self-medicate with the many drugs we had. But I’m a pretty sensible person so I looked up the nearest emergency department and told Diane to drive me there. I was hoping they could at least give me an intravenous dose of dexamethasone because the headache wasn’t lifting and I was running low on steroid tablets because I had thrown so many up.
I was taken back into the emergency room pretty much as soon as I got there. It’s amazing how quickly people react when you start throwing C words like cancer and chemo around. My temperature was high, my heart rate very fast and they didn’t like the sound of my cough. They were more concerned about my cold than the headache from my brain swelling. They did give me dexamethasone intravenously though. I had a chest x-ray and there was some opacity in my right lung that looked like the beginnings of pneumonia. So they wanted to admit me to hospital and give me antibiotics and monitor my temperature and heart rate. There were no beds there so I was transferred to a private hospital 15 minutes up the road.
Spending the last night of my holiday in hospital was not part of the trip I had planned. Eventually my temperature and heart rate returned to normal, but the oncologist was not keen to release me on Monday so I could catch my flight back to Brisbane. I argued that it would be safest for me to travel with my friend that afternoon in case I became unwell on the flight rather than travel on my own the following day. He did not agree with my logic. Fortunately, his boss did agree and reluctantly allowed me to leave with a prescription for a week of antibiotics as long as I saw my medical oncologist the next day.
That would not be a problem. I had chemotherapy booked for the next day (another reason I was keen to get back to Brisbane) so I knew I would be seeing my medical oncologist. However, I didn’t end up having chemo because my temperature was a little on the high side and my white blood cell count had gone lower again when I got to the hospital on Tuesday. Adding more chemo to the mix seemed a bit of a risk. I also increased my steroid dosage to 4mg a day again because my brain is still swollen.
So is there a moral/lesson to this story? Don’t get too confident. Keep taking all your medicines with you, even if you never use them. Travel with someone who will go that extra mile to look after you. Follow the rules, even if you don’t feel feverish. If your temperature is above 38 degrees, get thee to emergency.