Day 12: Another sunny day (Wednesday 9 November)
November 9, 2011 1 Comment
I was blown away this morning to receive so many electronic messages of goodwill and to find so many people signed up to reading my blog updates. I don’t know what to say. This is extremely humbling. I think it is best if I don’t think about it actually because I need to continue to write as though I am just keeping a few friends updated on this wild ride or else I will get stressed out by the pressure then the whole exercise may come to a halt. (The blog part, not the treatment).
This blog process is important for me for three reasons. First, it is to keep family and friends updated. Second, it is giving me a routine and some purpose in my day. Other than getting dressed, going to hospital, and getting treatment, it is really the only thing that I have to do while I am here. Keeping a journal is a lot cheaper than therapy so I figure let’s run with that! Third and finally, I want to provide a snapshot of my experiences here for other cancer patients who are considering treatments not currently available in Australia.
So, thank you one and all for your interest and support. I won’t be able to respond to all the messages that I’ve received individually because time and energy and scarce commodities for me right now. But thank you, thank you, thank you.
Another hard day
I really didn’t know if I could put one foot in front of the other and go through it all again today. We both slept terribly and I woke up around 6am with pain from both ends. No! It’s not what you’re thinking!! The hard mattress had aggravated my flank again so that pain was bothering me, but I think what actually woke me up in the end was the overwhelming taste and smell of garlic that had overtaken my mouth. At first I couldn’t figure out what it was but I knew there was a sort of peppery thing going on in there. Then I realised that it was the garlic that had been part of the marinade on the meat last night. Don’t get me wrong, I love garlic. I cook with it most night’s at home whether I’m doing something European, Asian or anything in between. But seriously, this was garlic on a whole new level. Step one, brush teeth vigorously. Rinse and repeat.
I felt like hell this morning and it was a major effort to get going. The 745am alarm got ‘snoozed’ to 8am, then that turned into 840am. Ooops.
We got to the hospital around 10am and paid the guy with the gene therapy in his esky. I had the P53 therapy then went off to SPDT. Things went quite efficiently in the SPDT department today. The only problem was that the gene therapy fever started to come on while I was still in the bath on my second run of SDT. So I was freezing and shivering when I got out of the SDT bath and quickly had to get back to my room and under my two quilts.
When I got back to the room after SPDT they had to take the plastic wrapping off my arm that waterproofs my picc line when I’m in the SDT bath. Unfortunately it wasn’t put on quite right today so there was an awful lot of the sticky side of the plastic wrapped around my arm… where the hair is. By this stage I was shivering and weak, but they needed to access the picc line to start the other drips running. That meant removing the plastic wrapper. That’s when the tears started. And the shouting. And the swearing. I really hope my nurses haven’t learned English swear words.
I was just at a really low ebb at that moment and the pain from ripping the plastic off my arm was too much to bear. It seems a bit silly given some of the other stuff I have to go through, but it really, really hurt. So I cried. They eventually got the plastic off then I buried myself under the covers and tried to sleep for a while to get myself back on an even keel.
Today Brad set himself one task. A considerable task, mind you. One that I thought was probably impossible. He decided that it was his mission today to find some foam to soften up our mattress at the hotel and mine in the hospital bed. We couldn’t wait for a mattress topper to arrive in the post so he went to search Xian for something that would do the job. Our interpreter went with him thank goodness, because there’s no way this job could’ve been done in the pidgin sign language that we’re using to try and explain ourselves to Chinese speakers. Allison and Brad went to three or four different shopping centres/ areas and in the end found themselves 50 minutes away from the hospital by cab. Apparently this is where they came across a sort of ‘foam heaven,’ probably Xian’s equivalent of Clark Rubber. Brad bought some lengths of foam and although I haven’t laid down on it yet, even sitting on the edge of the bed is a whole different experience to what it was like this morning. Hallelujah.
Don’t you come from a developed country?
As I was laying in the bed today waiting for my fever to pass, my interpreter Allison sat reading a book on “Gendicine,” aka gene medicine, which provided information about the P53 gene therapy that I’m having. She asked if my doctors in Australia had recommended it to me. Aaaah, that would be no. No? She was confused. What about DC (Dendritic Cell) therapy? Did my doctors put me on to that? Mmmmm, no. So, how did I find out about these therapies then? I explained that various friends had provided me with information about SPDT, DCT, P53 and various other of the therapies that I am having here in China, and that most of the information I had came from the internet. “But don’t you have these treatments in your country? Don’t doctors give these treatments to people in Australia?” “No.” “Why?” “Government regulation.” At this point I was starting to confuse myself about who was from which country. Then Allison said, “I thought Australia was a developed country.” Yes, so did I. But then I got a terminal cancer diagnosis and it turns out that our tremendous Western democracy severely limits individuals’ access to medical treatments and dictates which ones we can and cannot have.
If I live, I think my personal mission going forward is pretty clear. Brad and I want to do everything we can to make sure that the treatments that I am receiving here in China become available as options to cancer patients in Australia. Simple really.