Day 7: Friday 4 November

Today was about a million times better than yesterday, thank goodness. My fever subsided late last night, then today I had the KLT infusion without a hitch, lunch (more in a moment) then SPDT. Even got to leave the hospital before 5pm – a real treat!

Probably the only noteworthy thing about today was lunch. Not exactly the biggest issue, but when you haven’t eaten for a while it gets kind of important. Yesterday we learned that the restaurant in the hospital has some very interesting opening hours; 7-8am, then 11am-1pm. Very odd for a café that needs to service a hospital full of staff, patients and visitors (thankfully, there is no in-hospital catering because that’s never any good no matter what country you’re in).

So although we missed the café opening time when we showed up for lunch at 1pm yesterday, today we thought we had it all covered when Brad and Allison (the interpreter) went down to get some lunch at 12.30pm. I remembered from yesterday that the café seemed to offer the usual style Chinese fare so I asked for some chicken and veges, perhaps with a few noodles thrown in. Easy? Hahahaha! They managed to come bag with a little bag of lukewarm broccoli with a few bits of carrot and cauliflower thrown in. Allison shared her dumplings with me so I got a few of those as well. As it happens, that was really more than enough for lunch. But, the chicken was “coming.”

After a short wait one of the catering staff showed up to the room with the chicken. Oh my. This was literally a feast for about 5 people. It turned out to be some sort of massive plate of rich, spicy, potato and chicken curry with its origins somewhere near the Tibetan border. I has a few mouthfuls and it certainly was delicious, but given I was vomiting less than 24 hours earlier I didn’t think that heavy, spicy food was really a great idea. Brad had a fix of it but unfortunately most of it went uneaten. I asked Allison if we could give it away but she said that because people don’t really know us yet they’re not really going to accept food from us – fair enough!

SPDT went far more smoothly today. No tears!!! They put more water in the bath so I managed to get the full treatment on my chest area and come out the other end unscathed. Everyone was happier today. I had KLT again – no dramas.

After hospital we went to have a look at an apartment to rent. It looks as though we can get a two bedroom apartment for less than it is costing us per week in a fairly reasonably priced hotel room. So that will be a better option as it should make the basics like preparing our own food, washing and so forth a little more accessible. The apartment was OK but wasn’t quite up to the health and hygiene standards that I need right now. There were also a couple of guys sitting waiting who really wanted it so I was more than happy to let them go right ahead. We are going to see an apartment on Sunday that looks a little nicer (at least from the pictures on the net) so hopefully that one will work out.

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Day 6: Thursday 3 November

What a shite day.

Really shite.

Things started out ok. A little interesting, to be sure. Then, they went to shite.

I started out the day with my P53 Gene Therapy. A bloke with a cold bag showed up in the hospital room, not wearing any discernible corporate insignia, and my interpreter said I needed to pay him 7400RMB for the gene therapy. Sure! Why not?! So, we handed over the cash and made an arrangement to meet at the hospital again on Sunday. At least we got a receipt.

I had the gene therapy and went off for SPDT.

The SPDT was mildly better than yesterday but not great. I handled the PDT OK, but we ran into difficulties again when it came time to receive the SDT over my chest area. The girls tried to hold me down over the water after bandaging up my breasts to try and squish them down. It helped a little, but not enough. They said they would check with the engineer to see what could be done to fix this problem, because obviously burnt nipples and a burnt back was not a good outcome for me several days per week.

I was feeling pretty weak and woozy after the treatments and went back to the bed in the ward ready for my daily KLT. Things were OK for an hour or so but then I got the shivers. I was told that a fever was a fairly common symptom of gene therapy because the P53 gene is infused using a live virus. So I got really cold then really hot and ended up with a temperature of 39.5 degrees. I was given a variety of medicines to keep the fever at bay (not antibiotics, might I add) and it levelled out around 38 degrees for quite a few hours. They kept trying to make me eat to “keep my strength up” but unpackaged food is a little hard to come by and I vomited up the basic focaccia-style bread that I had for lunch (just bread, no cheese or meats or anything), so I really wasn’t in the mood for food. By 10pm or so we decided that Brad should go back to the hotel and I should stay overnight in hospital (the temp was down to 37.5 and I felt better, but no point aggravating things by going out in the cold). We couldn’t convince the interpreter to go home so she also stayed overnight in hospital just in case I needed anything. Despite having slept most of the day, albeit under feverish conditions, I slept right through from 1030pm to 8pm and definitely felt a lot better in the morning.

Day 5: Just the medical stuff

250ml glucose and sodium chloride

2g Vitamin C, 5ml potassium chloride, 200mg Vitamin B6

200ml KLT (Kang Lai Te)

100ml? 100ml? (.9%NaCl I think)

1.25wu?

Day 5: Wednesday 2 November

I woke up to a few emails that came through on my Blackberry this morning with more messages of good fortune from family and friends (I have to get off global roaming asap!!!). An article came through that was printed in The West yesterday about cyber malice with references to comments made by nameless, faceless people last year when I joined the campaign for Opt-Out organ donor legislation in WA. (I have long been an advocate for organ donation, certainly well before I ever thought I would need a donor). I have no time or energy to dwell on such things, but suffice to say that kicking a really ill or dying person on the way down is a pretty low act. I hope the WA Parliament gets its act together soon insofar as the Opt-Out legislation is concerned. It will make WA a leader in the nation on this front and of course individuals will retain the right not to participate in the system. Last year there were fewer than 800 organ donors nationally and it is just not enough for the wide variety of people who could really use a spare organ here and there.

Not all dim sum and roses

Today was bloody tough. I cried a lot. First, it took two hours and five medicos to extract 50ml of blood from me. They actually needed 100ml so that it could be infused with ozone (O3) and put back in my body. They looked at my arms, hands and feet and there were no viable veins to harvest. I have a power picc line in my arm especially for extracting blood and inserting fluids but it seems that we don’t have the right plastic connection to stick on the end of the line in order to syringe the blood out fast enough. I think that was the problem; either that or the fact my blood just wants to stay put. My Mandarin isn’t coming along too well so I can’t really say for sure. Eventually they got some blood out and put it back in again then it was off to start SPDT for real.

The medicos had some very stern advice for me today: have faith (in them (at first I thought they were talking about God, but apparently not)), don’t worry, don’t be nervous, stay happy and positive. Righty oh then. Will do! Well, at least I will try my best.

First SPDT session

Joined by my interpreter and SPDT nurse we ventured to the basement of the hospital (located just around the corner from the café and the international cancer centre)! There I stripped down and laid on what could have passed as a tanning bed (not that I’ve ever been on one with my pale skin), but for the fact that the lid sort of closes down on you like a slab. Fortunately, I wasn’t aware of this until the treatment had started or I may well have bolted. I put on the thick eye mask and was oblivious to the fact that I was sandwiched into that machine with no ability to escape until I moved a little then found that the top layer of the machine was millimetres away from my nose. On the upside, it was fairly warm and cosy in there so I managed to focus on other things and take the light treatment quite easily.

The sono-dynamic treatment (sound therapy) wasn’t quite such a happy walk in the park.

I stepped into a large bath of water that was set at about 37-38 degrees. I would’ve liked it a little warmer but that would have affected my oxygen levels and so it had to stay at that heat. Things started off pretty well. I laid on my back in the bath and a cover of sorts lowered over the bath to skim the surface of the water just above where I was laying. I presume is a feature of the machine that allows the sound therapy to penetrate from both above and beneath the body. The metal plate was quite large and covered around a third of the bath. It started down at my feet and slowly moved its way up to my shoulders. There was a very slight stinging/ pinging sensation which I didn’t mind at all; it certainly didn’t hurt. At least, not at the beginning.

I am convinced that the inventor of this SDT device was a man who only intended to treat men. You see, there is a grand flaw in its design. Most women will be more naturally buoyant around their chest area than in other places. This buoyancy did not serve me at all well by the time the metal place made its way over my abdomen and then towards my chest. You see, the treatment works when the patient is submerged in the water so that the plate can easily skim over the surface and deliver its sono-goodness. What can I say? My chest would not submerge. This had a very unpleasant and undesirable effect which caused the nurse to have to turn off the machine and rethink the strategy. By this stage I was feeling hot and sore in places, chlaustrophobic and scared. I couldn’t help but wonder if Brad was right in his extreme-cynicism about most things and that maybe this was just a giant scam designed to squeeze money out of desperate, dying cancer patients. I had to use all my might to put those thoughts out of my mind.

A daily cycle of the SDT involves the metal plate moving up and down the bath twice. Oh goody, once more to go. This time the nurse and the interpreter literally held down my chest and shoulders under the water so that my skin wasn’t touching the hot sonic plates. It meant that while my chest was mostly protected that my back actually got a little red and hot from the process. I was freaking out and crying again during this ordeal but in reality it was only a few minutes of pain to endure. I got a few weird pains in my shoulders during this time but they quickly went away and haven’t come back. Finally, it was over. For today at least.

After dressing and drying off it was back to my room on the ward to take my daily infusion of KLT. That takes about three hours so I used the time to catch up on a bit of Eckhart Tolle and a nap.

I am rarely left alone and the team is always checking to see if I need anything and whether I am feeling OK. No complaints there.

After our eventual release from hospital today we stopped in at the restaurant near the hotel for a quick bite. We managed to order our food by pointing at the pretty pictures in the menu (thank goodness for illustrated menus) but unfortunately there were no illustrations in the drinks section. There was a page for juice so I thought I’d just point at the watermelon and that watermelon juice would show up in a glass. Wrong. Instead, we were served a piping hot jug of thick, brown juice with a very unpleasant aroma. Quickly, we assigned the jug to the recesses of the table and I went off to point at a bottle of beer and a lemonade so that we could make shandies. Not anti-cancer drinks I know, but organic juice bars are not so easy to come by in these parts.

Another day, tick. We are both buggered. Getting used to the rock hard mattress. We might just have enough energy left to watch one episode of “At home with Julia,” then we’ll see what tomorrow brings.

Day 4: Just the medical stuff

Just the medical stuff

250ml glucose and sodium chloride

2g Vitamin C

5ml potassium chloride

200mg Vitamin B6

200ml KLT (Kang Lai Te)

2 bottles of chlorophyll drops (5ml per bottle, under tongue)

Day 4: Tuesday 1 November

Yes, of course we should have a national public holiday for the Melbourne Cup! After all, practically everyone takes it off anyway. I say we just swap Melbourne Cup for the Queen’s Birthday holiday and be done with it. In fact, why not just make Phar Lap Head of State? He’s just as stuffy. Oops, I meant stuffed.

The green lantern

After arriving at the hospital around 930am I didn’t get to leave til after 730pm. Another long and boring day. I was told to expect boredom to be one of the worst side effects of this treatments and my informant was right.

I had some blood tests this morning and there was a bit of waiting around until Dr Yan came in to offer his final determination on what treatment I should have, in what order and with what timing. I understand that he had consulted with other colleagues including those at a sister clinic in Guangzhou.

I freaked out a little when the list of costs for the additional therapies was delivered. I already knew what they were but now that it was real it was just a bit hard to take in. Brad pointed out that the cost of all the extra therapies would probably cost the same over two months as one extra cycle of SPDT. Basically, I’ve jumped in the deep end so I might as well use that Bronze Medallion and just keep swimming.

After lunch I started on the chlorophyll drops again. The process takes five hours to absorb two bottles of drops under the tongue, and two drops are administered every two minutes or so. Fortunately I have a remarkable talent of being able to multi-task while I am asleep. I drifted off to sleep and managed to have just the right amount of consciousness to be able to open my mouth every time someone came to put the drops in my mouth, all the while staying asleep. I’ve taken some photos of what I look like with green teeth, tongue and lips. Not a pretty sight, but all part of this wild ride.

The kindness of strangers (and especially friends!)

I am overwhelmed and taking great heart from the stream of goodwill messages from friends and strangers at this difficult time.

Thank you.

All the words of comfort and support mean a great deal to me and lift my spirits every time a new message comes through.

It is heartening to receive messages from people I haven’t been in touch with since high school, friends’ parents and other people whose paths have crossed mine over the years.

Today I received a message from a stranger whose own friend recently died from cancer, far too young. He and I swapped messages bemoaning the stranglehold that big-Pharma has on the medical system in Australia and beyond. I promised that should I win this battle, or at least get a decent reprieve from my killer disease, then I will do everything that I can to make the treatments that I am getting here in China available in Australia to people who choose this pathway.

Royal Massage City

Well, we sure thought all our Christmases had come at once when we saw the glistening lights of “Royal Massage City” just up the road from our hotel. After sleeping on a bed apparently made of brick pavers we were both well and truly in need of a decent Chinese back massage… you know, like the ones you can get in Northbridge.

We couldn’t believe our good fortune when we were greeted by women in long silk dresses and men in smart suits with high-tech headphones making the whole outfit look like a very smooth operation. We dispensed with our footwear and were quickly seen to a room with two massage beds and offered soft drink. But then the problems started. We have mastered “hello” in Mandarin, but we’re currently struggling on word two: “thank you.” It’s a tricky one. Suffice to say that we haven’t got “massage” down in our vocab yet. After desperately trying to use pidgin-sign language to say we want a half hour back massage each, we gave up and called our interpreter to see if she could have more luck. Given I’m still using global roaming but the time the whole negotiation had ended I think I probably racked up $20-30 just trying to get out of the gate.

Eventually the guy in charge left us with the two massage ladies. We changed into the prescribed massage garb which was a particularly unattractive grey-white shorty-pyjama looking number. The masseuses spent a lot of time giggling and possibly catching up with each other on the latest daytime soap opera but didn’t seem to be putting a lot of effort into the massages. I can safely say it was one of the worst massages I’ve ever had since it lacked any sort of purpose, had no pressure and offered no relief to either of our sore back problems.

Oh, and there was one other thing. The masseuses were wearing uber-short skirts and schoolgirl uniforms. Ummmmm….. Don’t think we’ll be going back there.

Day 3: Just the medical stuff

Just the medical stuff
.9% sodium chloride, Reduced glutathione 1.2g
Glucose 250ml, adenosine disodium triphosphate 40ml, coenzyme A 100 (?), potassium chloride 5mg
Kang Lai Te 100ml
Glucose and sodium chloride 250ml, vitamin C 2g, vitamin B6, 200mg