Day 12: Just the medical stuff

P53 gene therapy, Vit C, Vit B6, KLT, SDT, PDT. Fever (39.5)

P.S. Here is a snap of me after the chlorophyll drops last week!

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Day 12: Another sunny day (Wednesday 9 November)

Thank you

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.

Cry baby

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.

Mission impossible

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.

Day 11: Just the medical stuff

Vit C, Vit B6, KLT, chlorophyll drops, Chinese medicine anti-fever injection, blood test.

Day 11: Bright, sun-shining day (Tuesday 8 November)

Before I get started tonight I want to send love and best wishes to Aunty Mary, my Nanna Zora’s sister, who had another operation for her breast cancer today. She first had cancer just before I had my first go in 2002 and now we’re both on the treadmill again. Here’s to fighting the tough fight Aunty Mary.

This morning we woke to sunshine for the first time since we arrived in China. We walked to the hospital under a blue sky and I thought that the title for today’s entry should be from the Everlife song, “I can see clearly now.” You know the one… “It’s gonna be a bright, bright, bright, bright sun-shining day.” It started out that way…

But now I feel like total crap. This is so hard.

I woke twice during the night from flank pain; obviously my tumours were not happy. I am convinced it is this damn hotel bed making things worse because even the hospital bed doesn’t make me ache like this. We’re going to get out of this hotel soon.

Today was meant to be an easy day of KLT and chlorophyll drops, with a nice three o’clock finish. It was not to be.

I had a pleasant morning and entertained myself by emailing friends and watching episodes of United States of Tara. Things were fine one minute then all of a sudden I started to feel like crap. I became all emotional, upset and frustrated and generally felt unwell. For those of you who have ever watched Tara, you’ll know about her ‘transitions.’ This transition of mine wasn’t a personality shift, but it was definitely a shift to some other state of being.

I ditched the devices and tried to go into a state of near-sleep, so that I could rest but still open my mouth often enough for the drops. As time passed it became obvious I was getting another temperature, even though that wasn’t scheduled til tomorrow! Brad and the interpreter came back from looking at some apartments and I had weakened noticeably.

Dr Yan came to discuss my condition with me and tried to assure me that things are OK. It was explained to me that the process of the body getting rid of tumour cells after they’ve died off can often cause a temperature or fever. He is of the firm belief that this is a good sign. I eventually had more Chinese medicine to help the temperature (only 38 degrees, not 39.5 like the other day) and got enough strength up to leave the hospital to go and get some food (I hadn’t eaten much since breakfast because of the drops then the difficulty getting suitable food afterwards).

Things are not helped by the fact that my haemoglobin is low as well (90). It has dropped since arriving in China so being anaemic means I have low energy reserves and I look incredibly pale and pasty. On the days I have been having drops I have been trying to have both bottles straight through which takes four-five hours. I haven’t been eating during the process because it means an hour of interruption to the drops (you can’t have drops half an hour either side of eating). But given how hard it is to get food at different times of the day, and given my weak state, from now on I am going to make sure I stop the drops to eat even though it will extend the total length of my days in hospital.

I got a lecture on nutrition from the medical staff today. It is easy enough said, but difficult to implement when you’re reliant on eating out all the time. Other than having more meat and more regular meals, the doctors told me to have Goji berries and Chinese dates to help improve my HB levels. We found a place to eat beef tonight which sort of resembled a teppanyaki restaurant. We both perked up a little after that. Then I managed to find the Goji berries and the dates at the supermarket. Maybe on my next day off we will go and find a big steak to eat.

Note to AJ: if you can figure out how I can get them through customs I will bring some dates back for you. Note to Heather: thank you for all your tips on how to keep anaemia at bay. Note to Baker: thanks for the links to the steakhouses!

Busted

Turns out I spoke too soon in relation to taking Panadol in such a lackadaisical manner. I told the doctors today that I’d taken a couple of Panadol to ease the pain this morning and they went into a tail spin. They started freaking out that it might mess with my kidney function or liver function. I tried to explain that it was ‘just paracetamol,’ but not surprisingly I don’t know the Mandarin phrase for that yet. I took them to the GSK Panadol website so they could read more about the drug and they seemed a little less concerned, but also said they were going to go and look into it to see if they’d let me take it or not. Bugger. Maybe this is just like any other hospital after all!

Perfect match?

For those of you eager for the next instalment of my matchmaking efforts I do have an update for you today. It seems that my trusty interpreter is indeed ready to ditch her younger boyfriend who is apparently just too young and inconsiderate. This news excited me a great deal because I thought it would open the door for me to weave my magic and unite doctor and interpreter. It looks like I may have been too slow out of the gate! It turns out that my interpreter already has another potential boyfriend waiting in the wings and that he declared his interest in her quite a few months ago. Geez, you gotta be quick around here. But, there is a hitch. It turns out that this new prospect is the ex-boyfriend of a classmate friend of hers. They went out for six years and have been broken up for two. Hmmmm. I implored her to discuss the prospect of going out with her friend’s ex with her friend before she did anything about it, and that in doing so, she needs to be ready and willing to lose that friend. Of course, this is all worst case scenario. Maybe her friend has moved on and doesn’t give a hoot about her ex-boyfriend and who he goes out with. Maybe.