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!

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

  1. Simon says:

    I thought “Taw” was spelt “Tor” – I am sure if they had spelt it like that you would have known what it was. We used to call them Tom Bowlers as well.

    Hang in there Jaye.

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