Day 17: Just the medical stuff

Vitamins, KLT, chlorophyll drops, HiFU on one kidney tumour (42 minutes set at 650 watts).

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Day 17: Bananarama (Monday 14 November)

My friend from NYC, John Frederick, said today “be practical, expect miracles.” I’m running with that John!

Today Bronwen quoted Dr Seuss online. Bronwen, I’m copying it too:

“Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.” And I always thought Dr Seuss was just all about green eggs and ham!!

Just half a banana

This morning got off to a fairly riotous start when Tonya called me from Colorado. It is fair to say that she made me “laugh out loud” more than once. Tonya isn’t the warm and fuzzy type (which is probably why we get along so well) and we talked about a range of day to day topics and bemoaned a few things which I can’t disclose here. Didn’t bother with the cancer talk; too much other stuff to chew over.

Anyway, Tonya couldn’t miss the opportunity to jump on the banana bandwagon given how many bananas people are trying to feed me here to try and stop me from crying. She asked me if I’d actually finished any of the bananas that I’d been given here. What?? Then she *gently* reminded me about my bad habit of starting a banana, eating half, leaving the other half around for later but then never coming back to it. Hehehehe. Maybe not my best trait, but definitely not my worst! I haven’t left any half eaten bananas around but I have been making sure that when I pick out my own bananas at the supermarket I choose the smallest ones to give me the greatest chance of finishing one.

HiFU – first treatment day

Today I had my first treatment of HiFU (High intensity focussed ultrasound). I was pretty nervous about starting another new treatment given that I really didn’t know what to expect. I was told that there wouldn’t be any side effects, or pain and that it would all be fine. I was also told that there might be some pain, some burning, or some other side effects. Ok, now I’m confused…. I checked online before the treatment started and read something about anaesthetic being recommended prior to HiFU treatment. Great.

I went down to the treatment room and got ready to start. Before I was allowed to start treatment I had to sign the consent and waiver form. Hitch. It was all written in Chinese characters. I may not have been top of the class at law school (or even close to it!) but I do remember one golden rule: don’t sign anything you haven’t read!!! That rule gets a bit tricky to apply when you can’t read the language of the document you’re being asked to sign. This makes me think of the myriad of forms we get new migrants in Australia to sign who probably have no idea what is being asked of them either. That topic is a thesis in itself so I’d better not get started on it here. Anyway, I figured a five-minute written translation was not an option so I asked my translator to read the document to me, from start to finish. This was not a short process. Nor was it a one-woman process. Everyone in the room wanted to chime in. I was getting very, very, very frustrated. I started to make “help, save me!!!!” eyes to Brad across the room and then I remembered three words: faith hope love. So, I just started repeating them to myself over and over. That’s all I have right now. Whatever that piece of paper says doesn’t really matter. I can choose to have faith, hope and love. I can’t control what’s on the piece of paper.

It turns out there were about 20 potential risks/ side effects of the HiFU on the document. They were general and I was assured that they did not all apply to me. The risks seemed to range from heart failure through to DVT. Well, most of those risks get disclaimed on Panadol packets so what the heck. Faith, hope, love. I signed (and got a copy of the form that I will get translated later).

I was anxious when the treatment first started but when I realised that the HiFU didn’t hurt or burn I settled in. I remained on my KLT drip during the process, and nurse Julia continued to give me the chlorophyll drops while I was on HiFU. Brad was rather taken with the whole process; quite a call for someone who is such a natural sceptic! He keenly watched the monitor and communicated with Dr Yan as best as he could to understand just how the whole process works. He was so impressed by it that it was virtually all he could talk about over dinner.

The HiFU was just focussed on one of the tumours around the kidney today. After a few days they should be able to tell whether it is having a positive effect or not. If it is, then the other tumours will also be treated. The tumour they treated today was one of the larger ones and 42 minutes was spent on it. The smaller tumours will require less time on HiFU.

Cheers to Greg and Stephen

Thank you so much to our friends Greg and Stephen who are helping us navigate the visa extension process in case I need to stay in China longer than my current visa permits. Much appreciated.

Day 16: Just the medical stuff

Vitamins, P53 gene therapy, KLT, fever.

Day 16: Cultural insensitivity (Sunday 13 November)

I hope Zoe has a most excellent third birthday party with all the Bunts, Harrisons and other friends at the beach today.

I really thought I was going to strangle someone this morning. Anyone. I didn’t care.

Last night’s sleep on the new bed was so-so. Maybe I didn’t sleep for long enough. I don’t know what happened but I caught Brad’s frustration bug from Friday and everything was getting on my nerves. I like to think of myself as respectful of other people and their customs, especially when I am a guest in their country. I think there’s a place for cultural sensitivity and I understand cultural relativisim. I don’t expect people here to speak English just because I can’t speak Mandarin.

Now, take everything I’ve just said and disregard it.

I might as well have been on one of those movies or TV shows where you get a couple of white people being completely obnoxious and inappropriate in a non-English speaking, non-Anglo Saxon country. I think secretly Brad was happy that my frustrations around the foreign culture and language were coming to the fore so he wasn’t feeling so left out!

I suppose the frustration comes from the little things. The problem though, is that it comes from all the little things. We were looking forward to stopping in to the buffet breakfast included in the room rate on our way to the hospital. We showed up downstairs at 930am only to find that the buffet had already been completely closed down. What?! These kind of opening hours make Perth look like a glamorous 24-7 international mecca. It is SUNDAY MORNING people!!!! Can’t we sleep in and still have breakfast? No. The added frustration factor came from the fact that we knew that there was an a-la-carte breakfast option was available on the menu at this ‘Western’ restaurant in the hotel. But it was like there was some sort of higher directive going on this morning: you must not let these pasty white people have their scrambled eggs – under any circumstances. So that was that.

We went over to the hospital knowing that our only option for food at this hour was from the hospital supermarket. We managed to get some fruit, a warm imitation fruit juice drink, a roll that was bound to be about 80% sugar despite it being labelled as “nutrition food,” and grossly over-processed sultana and date cake. The sweet roll was discarded after one bite but the apple and banana were fine. The date cake, despite its over-processing, was quite edible. Unfortunately though, nothing like Nanna would make.

When I got into my room I felt as though everyone around me was giving me the ‘hard sell’ on HiFU treatment. I had said that I would give them a yes or a no on proceeding with HiFU today. But I also wanted to feel like it was my decision. Allison started up about it, then someone else or other, then Dr Yan. I was going to scream. I know it wasn’t rational but the fact that everyone seemed so keen for me to pay up and get started on this new treatment started to make me suspicious. Probably it was just that they were concerned about my pain and believe that HiFU will help to eliminate the pain, not that they wanted to make extra money out of me. I couldn’t help but be cynical.

I told them I will take HiFU but that I didn’t know when I would get the money to be able to do it. We are having a ridiculous time with the banks. Last week Brad transferred money to Dad, Dad got the money and took it to the bank and physically filled out the transfer form and talked to the people at the branch in Perth to get the money transferred here into the Chinese bank account so that we could access it and pay for the treatment. That was Tuesday. As of today (the banks are open on Sundays) the money still isn’t here. We’re not here to launder money people – I just have to pay the hospital!!! Give us our money you stupid banks. And while you’re at it, disclose your commissions along the way!!!

Anyway, after a very long conversation in Chinese it was agreed that I would start HiFU tomorrow (Monday) and that we could get some grace time to pay until our money arrives. I was told that three other patients are receiving HiFU at the moment so they couldn’t guarantee what time I’d be rostered on to the machine. They were very eager to tell me that the mother of the President of the hospital was one of the three other patients receiving HiFU. I suppose that information might be persuasive, depending on whether the President likes his mother or not. If he does, and he’s trying to save her life, then that’s a good thing. If he doesn’t, and he’s just using her as a lab rat, then maybe I should be worried 😉

An hour and a half or so after I got my P53 today the fever came on. The shivering was really violent today. Not violent as in I hurt someone or got hurt, but violent as in epileptic-fit style shaking in my bed. It was a bit weird. The shaking passed and the cold turned into heat, and I drifted off for a couple of hours or so. KLT was infused as normal and I left the hospital around 5pm, saturated in my own sweat and looking forward to a shower and getting into some dry clothes. I am definitely getting more efficient at this fever thing.

Brad’s trials and tribulations

Brad had a bitch of a day. There’s just no other way to put it. A few tasks that should have taken an hour took him nearly six. I am trying to encourage him to write a blog entry so that he can tell you what this is all like for him, in his own words. Of course, I didn’t say that I wouldn’t edit what he writes 😉

A dose of normality

It was short-lived but tonight we had just a small dose of normality. After we came back from dinner at the dumpling place where the lady used to be an English teacher we thought we’d treat ourselves to some couch time and a Sunday night movie. Brad watched Transformers 3 (he’s such a boy!!) and I promptly went to sleep on the couch. Nice.