Day 19: Just the medical stuff

SPDT, Vitamins, KLT, Hi FU (approx. 50 minutes at 600 watts)

SDT bath

Sonodynamic treatment in progress

 

 

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Day 19: Midnight in the Porcelain Palace (Wednesday 16 November)

Last night was another horror night.

We had hoped to go to sleep early given the lack of sleep from the night before but we ended up watching a DVD which postponed the arrival of the Sandman.

My back ached badly last night and neither Panadol nor massage provided much relief. My back problems mostly come from lying around all day in the hospital bed and on the treatment beds, as well as from general lack of exercise. Brad is convinced my back problems are exacerbated by the amount that I use my iPad in the hospital bed thereby putting extra stresses and strains on my back, neck and shoulders. Today I had an iPad-free day and took a couple of books to the hospital instead (not that I had a chance to read them). My back is still sore, but nothing like last night.

I tried to get to sleep but the pain was really pervasive. After a while of trying to get comfortable something very strange happened. The back pain (in the upper section of the back, on the same side as my tumours) become inexplicably excruciating. I started to cry and yell out. It was very unusual; not something I have experienced before. Then out of the blue I had to run to the toilet to throw up. The back pain dissipated after the vomiting stopped.

I can’t stand the sight of vomit, or the thought of it. It makes me vomit (???!!). So I shut my eyes while I was over the toilet bowl. Brad on the other hand has a far more inquisitive mind than me. He looked. He assured me that the vomit was actually my noodle-soup from lunch, rather than the chicken, spinach and rice that we’d had for dinner. I’m not sure how food from four hours earlier could have been processed without a hitch but lunch from ten hours beforehand was able to reappear. Anyway it did.

Brad got me some lemonade then I had more Panadol and tried to get back to sleep. I think I did fall asleep for an hour or so until the back pain started up again. The pain shot from my back through my shoulder and my arm but at least this time I knew what was coming next, so I high-tailed it to the loo. Still no chicken and spinach, just noodles.

By the time I got to the hospital this morning I was already exhausted and treatment for the day hadn’t even begun. I had SPDT then went back to the ward for KLT and vitamins. I decided to steer clear of the hospital cafeteria and lunched on fruit in my room instead. I felt pretty buggered by the time I was due at HiFU treatment and started to wonder if I could even go through with it today. My temperature was up a bit, although not at fever pitch. I got through HiFU and finished off the infusions back in the room without incident.

No P53 gene therapy today

I was due to have my twice-weekly dose of P53 gene therapy today (the one that gives me a fever for 4 – 6 hours). I couldn’t do it. After the discomfort of the past two nights, the vomiting and the general exhaustion that I’m feeling (which has worsened since I’ve started HiFU) I just could not bear the thought of yet another debilitating fever, and a long, late night in the hospital.

I am starting to feel that I am about at my maximum therapy limit. I experience an intermittent but regular stream of pains in the areas that house my tumours which I can only put down to the SPDT and HiFU. Hopefully the pain is just a by-product of the necrosis that’s supposed to be going on inside me, but it will take a few more weeks to know the answer to that. In any event I feel tired, sore, uncomfortable and generally just overtaxed.

I don’t think I can just keep taking therapy after therapy each day or I just won’t be well enough to continue on this marathon journey. I figure there’s no point ‘overdoing’ the therapies now if it is just going to deplete the strength that I need to help me recover. Plus, there’s the mental health side of things. I need to retain a modicum of sanity in order to be able to stay in this race. If I go nuts now, then it’s all over red rover; and it’s far too early for that.

Tomorrow I need to have a good talk with Dr Yan about just how much therapy I can take on any given day, and over the course of a week. I am sure he will help me plan a programme to maximise the outcome for me on all levels.

English lessons

Allison was interested in the novel that I took to the hospital today and she thought she might have a read. The book was a gift from my multi-talented friend Karen Treanor (www.bandicoot-books.com), although it was not one of her own works. Allison asked if she could read to me and if I would help her with new words that she hadn’t heard before to help expand her vocabulary. Sure, sounds fun! Definitely an easier option than going back to her trying to teach me words in Mandarin… So, she started to read.

I am embarrassed to say that despite the five or six university degrees that Brad and I hold between us there were two, count them TWO, words on the first page of this innocuous novel that neither of us had ever heard of before. How embarrassing. Two native English speakers trying to help a Chinese speaker improve her English vocab and we looked like rank amateurs. What could we do but laugh?

For the record the words were:

Taw marbles (just the taw part, we know what marbles are!) A large fancy marble used for shooting;

Ormolu Metal alloys representing gold in appearance and used to ornament furniture.

Jany Chau. Life saver.

My mate Jany Chau is a life saver. A gem. A legend. She also happens to be very clever and creative, and a bunch of other stuff. Lucky for me she is particularly generous.

As I have mentioned, it is very hard for us to get the basics done here in China without speaking the local language. Even when we try to speak a few words we invariably get the tones wrong and things turn awry very quickly. I mentioned these challenges to Jany at some point or other and, being the creative, resourceful woman that she is, she has organised a solution for us. Amazing.

I now have the cutest ever set of words and phrases, in English and Mandarin, with pictures, to help us get by in our daily lives. I’m going to try and upload one of the image sets so you can see how awesome it is for yourself. Eat your heart out Lonely Planet phrasebook – I have Jany Chau and Crayon Digital (www.crayondigital.net).

Perhaps this help from Jany represents life revolving full circle yet again. You see, Jany and I first met in China in 2007, even though she’s from Sydney and I’m from Perth. Now she runs her company in Singapore. Jany’s team members who put the cards together for me are Singaporean and Belgian nationals, respectively. Now that’s international cooperation!

Day 18: Just the medical stuff

Vitamins, KLT, chlorophyll drops, HiFU (42 minutes at 700 Watts).

Day 18: Thank you Alex and John (Tuesday 15 November)

Oh, what a night. Tossing and turning til 4am for no apparent reason. No amount of Tara, general clearing of my mind or late-night Words with Friends (aka Scrabble) would put me to sleep. The good thing about it though was that I didn’t have to get up for work the next day! The sum total of my ‘jobs’ today included getting breakfast (a more complex tale than it might seem at first blush), walking over to the hospital, and lying in bed all day receiving treatment. Wait a sec, I did get up for lunch.

Barely a day goes by without thoughts running through my head like, “where am I?” “what am I doing here?” and “how on earth did I get here?” The answers to these questions form a hazy blur in my mind spanning three weeks in October. It’s probably worth recounting some of the tale that has led me to this foreign land.

A couple of weeks after we got back from our big “end of cancer” holiday in Peru, I was diagnosed with a recurrence of Wilm’s Tumour for the third time. Tiresome, indeed. I visited specialists every day trying to figure out the extent of the recurrence and to identify a possible treatment programme. After a couple of weeks we realised that the disease had gone crazy and had not only formed four or five (I’m still not really sure) tumours in the kidney area, but also a couple in the pelvis and one in the armpit (presumably in the lymph nodes). I was scheduled to have surgery on 31 October but on the day that I had a PET scan to assess the full extent of the spread I also met with one of my surgeons (I appear to be collecting them). Let’s just say the meeting was short. He told me that the tumours were inoperable because of their number and location and I was sent back to the oncologist.

I can’t tell you how many times I’ve said “hope I don’t see you again” to my oncologist (he gets that a lot). But there I was. Back in the familiar surrounds waiting to see what my options were. At this point, I thought I had some options. Chemo fixes everything, right? Mum, Dad, Brad and me packed out the oncologist’s office eagerly awaiting some good news. There was none. Forget surgery, forget dialysis, forget everything. D-Day was nigh. I was prescribed a couple of different chemotherapy drugs, one of which I’ve had before and one which was a cousin of a drug I’ve had before. The purpose of the chemo would be to “buy time,” and prolong my life. But not save it. Grim.

I think there were eight days between getting the terminal diagnosis and leaving for China. How that happened I’m going to have to try and remember.

Obviously the news was shocking and confronting. Not knowing what to do, or where to turn. I had loosely agreed to start chemo because I didn’t know what else to do or that there were other options for me. I shared this news with family and friends but no one knew what to say. That was until I got the scientists involved 😉

Deep gratitude for Alex and John

The thing I like about scientists (at least the ones I know) is that they’re a very pragmatic bunch. Very interested in the facts and figures and not too concerned with feelings or ‘emotional stuff.’ Just what I needed! I had a long chat on the phone to my good friend Dr Alex Zelinksy who mentioned that his old boss from the ANU was also a kidney cancer patient. He didn’t know if it would help at all, but he’d put us in touch.

Over the next day or two I spoke with Alex’s former boss, Prof John Moore. John has been a kidney cancer patient for five years and is firmly saying yes to life. He has a different kind of cancer to me but we have a similar story in that chemo was not predicted to save either of our lives. John has vigorously researched and pursued many forms of treatment for his kidney cancer, and has travelled to various places around the globe to get treatment that is not offered in Australia.

Over the past few weeks John has been a lifeline, a god-send, a hero and a dead-set-legend. He has shared with me reams of good quality, reliable information about potential treatment options for kidney cancer. John was the one who put me on to SPDT treatment in China, and he has also helped me to better understand the other treatments that I am receiving here. He continues to check in with me on an almost daily basis and I am very grateful to have him as a new friend.

So, thank you to Alex for introducing me to John. Thank you to John for being so generous with his knowledge and time. You have both given me hope, which is of course, priceless.

Today’s tarot

I was lucky to wake this morning to my own personal tarot reading courtesy of the lovely Nathalie from Sydney. Today Nat drew the Six of Wands card for me; she was thrilled. Nat says:

“When we’re feeling challenged there is no better card to receive… it absolutely assures us of good news and ultimate success.”

Woo hoo!!! I’ll take the Six of Wands anytime. Thank you Nat.

Stuff I forgot to mention yesterday

I thought I was being so diligent with my daily recollections but when I was chatting on the phone to Tonya yesterday she pointed out that I was telling her a lot more than I had written in the blog. Sheesh. No rest for the wicked.

In brief…

We found our money!!!

After Brad’s daily visits to the bank yielded no success in the money transfer stakes he decided to up the ante. Bring in the big guns. He took Allison to the bank. It turns out that various funds transfers from Macquarie Bank, BankWest and others (I’m not sure) had eventually come through. Not in the time frame we were promised, but the money was there. Each time Brad had checked on the account it had come up saying we had 5RMB in the account (less than $1). It turns out that he had actually opened a multi-currency account, so that the money we transferred in Aussie dollars wasn’t showing up as available credit in RMB. At least that part of the mystery was solved.

Of course, the trials and tribulations surrounding the money transfers are far more complex than I allude to in my brief summary. But I have abrogated all responsibility in this area and have left it to Brad so when (and if) he decides to chime in on the blog he can fill you in. I should say that I am thinking of getting the good people at the FIO (Financial Industry Ombudsman’s Office) on the case when it comes to this international money transfer lark. There appears to be almost no disclosure by the banks of what fees, charges and commissions will be charged along the way between setting a funds transfer in motion in Australia and having the money pop out the other end (in China, or anywhere else). Apparently any number of intermediary banks can be involved in this process and each of them is free to take their cut. Mamma mia.

Chinese laundry?

Everyone has heard of the ubiquitous Chinese laundry. They’re everywhere – major cities in countries all over the world, and country towns to boot. Everywhere it seems, except for China.

No joke.

The couple of laundries that we’ve found here in Xian appear to be dry-cleaning places, rather than normal old laundromats. They also appear to be hideously expensive. Brad has been quoted something like $6 to get a t-shirt cleaned. He was not up for this expenditure given that the t-shirt in question was one that we got from the Rivers outlet store for $5…

We have had laundry done in the hotel a couple of times at about $50 a pop. That excludes undies and socks because we bought some Omo and a bucket to take care of those J. (Like John F says, be practical…) Given that we can get lunch for $1, it seems out of kilter to pay $2.20 to get undies washed. I know hotel laundry is expensive at the best of times, but this seems really excessive.

Love in Xian

Not too much movement at the station on the matchmaking stakes. Allison’s young boyfriend appears to be taking a strategic and aggressive approach to keep in her favour.  I hear there was even a dinner this past weekend that he invited her mother to attend!  The only gossip I’ve got is that Allison and the young boyfriend (he’s 22, she’s 25) got sprung walking around near the hospital on Saturday – by the eligible young doctor! Apparently he was in the area with his dad and saw Allison and her current beau. I think she had hoped to keep her powder dry on that one but no cigar.  If I understand correctly she has abandoned the idea of going out with her girlfriend’s ex-boyfriend. Phew. Crisis averted.