Here is a cautionary tale about using Dr Google.
Do you remember in my post about my theory that hospital stays are like long-haul flights that I told you that the reason I had to go to hospital to have an infection treated was my fault? And I used The Neverending Story line that it was another story that would be told another time? Well, now is that time. Also, I told you how I was a big fan of The Neverending Story book and film, but failed to mention I was a big fan of the song too by Limahl. Remember Limahl from Kajagoogoo? My friend Mandy and I were a little obsessed with Kajagoogoo for a while in the 1980s. Hey, it was the 1980s. Everyone was doing it.
So my story begins with a mysterious phone call from my radiation oncologist’s registrar requesting I get a CT scan quite urgently.
A couple of days before I got that call, I had completed my radiotherapy planning session for my post-mastectomy radiotherapy on my chest now that my surgery had healed. The planning session had included x-rays and a CT scan to line everything up in place and determine dosage levels, etc.
I had been out walking the dogs and had just got home when my phone rang and I noticed I had missed three calls from the same number in the past hour. I answered it, just as the dogs began barking and whining at me to be fed now that we were home.
My radiation oncologist’s registrar told me that she needed me to go to the hospital for a CT scan and she had booked it for the following morning, and I would need to fast for two hours beforehand as I would be injected with contrast dye. Over the hubbub of the dogs, sweating in the summer heat after walking them for an hour, I just said yes, took a note of the time and hung up.
It wasn’t until later that I became curious about the reason for the CT scan. Firstly, there was the urgency to get it done and the fact she had called me so many times to get hold of me to set it up. I had also researched radiotherapy planning and a CT scan with contrast was not part of normal planning. Something must have shown up during the planning session and they needed a better look at it, I told myself. But what?
Later in the day, I called back the registrar so I could find out the reason for the scan. She didn’t return my call. I went to the scan appointment the next day, still unsure why I was getting it. I went to my next appointment with my radiation oncologist after the weekend, still in the dark about the reason for the scan. It didn’t feel right. Something is wrong, I told myself.
I met with the registrar at the appointment and finally got to ask her why I had the scan. During the planning session, they noticed I had an enlarged mammary node in my chest and wanted to get a better look at it. It might be harmless and just enlarged because my body had recently been through chemo and a mastectomy. I had a couple of enlarged nodes under my arm removed during my mastectomy/axilla clearance that they thought might be cancerous but were just enlarged from battling with the chemo, according to the post-surgery pathology report.
Unfortunately, there was no way to know for sure with the mammary node if it was cancerous or enlarged, so to be on the safe side they were going to treat it as if it was cancerous and include it in my radiotherapy sessions. It, too, would get blasted with the radiation beams.
I then went to my first session to get blasted, but it was immediately cancelled because all of their measurements were out. In the week between my planning session and my first radiotherapy session, the seroma around my mastectomy had dramatically increased in size and I now had a lot more fluid around the surgical site than I had the week before. I was told to come back in a week and hopefully the swelling would have reduced so they could begin radiotherapy
I didn’t want to wait another week. We’d already had to wait a month for me to heal from the surgery before we could start radiotherapy. I’d read my pathology report that showed my cancer was still quite active when it was removed as it had been very resistant to the chemotherapy. All of the indicators for recurrence or spread of my cancer were very high. The goal of the radiotherapy was to mop up any of those cancer cells that might still be floating around in there and make sure they didn’t spread. To me, it was urgent we get started as soon as possible. I also now had the possibility it had already recurred in this enlarged mammary node. If that could happen in just a few weeks, where else might it turn up?
I, of course, turned to Dr Google to tell me more about cancerous mammary nodes and none of the news was good there. My chances of recurrence or spread were now probably higher if it was cancerous. It was not normal practice to remove them if they were cancerous, unlike the cancerous lymph node I’d had removed from under my arm so radiotherapy was really the only option to treat it. To get a mammary node out, you needed to crack through the sternum because it was so deep. I needed to start radiotherapy ASAP but this seroma around my mastectomy site would delay it if it didn’t go away. I can’t just sit around and wait for this extra fluid to be reabsorbed back into my body. Hello Dr Google, how can I speed up this process?
I came across some people who had success in speeding up the reabsorption of their seroma by applying heat to the area. This made sense to me, so during the next weekend, I heated up a wheat pack, placed it on my chest for 10 minutes to do its magic and wished for reabsorption.
A couple of hours later I was talking to a friend on the phone and told her about my home remedy plan. ‘I might go heat the pack up again and give it another blast,’ I said, walking towards the microwave. And then I took a better look at my chest to see if it looked smaller. And that’s when I saw I had massive watery blisters across my chest. I had burnt myself. Such a stupid thing to do when my skin was about to be blasted and burnt to smithereens by the radiotherapy. I’d given it a headstart. I berated myself over my stupidity because I’d done this to myself and this would be another reason not to start radiotherapy on Monday. I now had open wounds on my chest after we’d just waited a month for the surgery to heal.
Another Dr Google search revealed warnings against exactly what I had done. The fact that the surgical site remains quite numb for a while after surgery as the nerve cells knit back together, that you no longer have a layer of fat there under the skin to take on that heat, it all made sense in hindsight. What I had done was so stupid. And I had no one to blame but myself. I was so ashamed at my idiocy and how I was going to have to show it to my radiation oncologist on Monday at my next appointment.
So off I went to my appointment on Monday and met with the registrar and sheepishly explained what I had done and showed her my blistered chest. ‘Yes, you definitely can’t start radiotherapy today with that,’ she said. ‘Come back next Monday and we’ll see if we can start you then.’ She also told me the site was at high risk of getting infected because my immunity was still very compromised from the chemo so she gave me a high dose oral antibiotic to take four times a day until I was healed.
I also had to meet with my surgical oncologist that week for a post-surgery check -up. My appointment was late Thursday afternoon. Again, I had to embarrassingly tell her what I had done. Her reaction was much more horrified. It appeared I had given myself second degree burns. ‘I need to put you into hospital,’ she said. ‘Tonight. Go home and pack a bag. You are going into hospital tonight so I can give you intravenous antibiotics every six hours. Plan to stay for the weekend. You are at high risk of getting an infection inside that wound site as there’s nothing in there to fight it off. If that’s the case, I’m going to have to open you up again, take out that tissue expander and clean up that infection from the inside. But if I can get these intravenous antibiotics to work, maybe we won’t have to do that.’
Cue dramatic music.
To be continued …