Day 25: Four seasons in one day (Tuesday 22 November)

Melbournians know only too well what it is like to experience four seasons in one day. But they generally get to experience the seasons through the weather. Today there were four seasons in my head. I was flat as a tack this morning. I got to the hospital and fell asleep almost as I got in to the bed. They started me on some drip or other and I didn’t even bother finding out what it was. After an hour or two they got started on the blood transfusion, which would turn into a six hour process. At some point Julia started delivering the sublingual chlorophyll drops but I was out of it while she was doing it. She had to call my name every few minutes to wake up just enough to get me to open my mouth and take the drops. Her job wasn’t easy today.

I had a break from drops so that I could have some lunch and Brad came back to the hospital to sort out some food. I could barely speak to him I was so down. I perked up a little after eating the food that Brad spent 40 minutes getting from the cafeteria, but that didn’t last long. Soon after the food I started to spiral down again and started to cry.

Bad thoughts entered my mind. The usual stuff. Has my time come? Am I really just meant to die of cancer? If the tests show that this treatment isn’t working what do I do next? Go back to Perth and die? To Chemo or not to chemo? Mexico? Cuba? Germany? It made me upset thinking about it so the best thing to do was to put myself back to sleep. Fortunately, I do have an inordinate ability to sleep more than anyone I know, so that wasn’t too much of a challenge for me.

I juggled the sleep-drops combo in the afternoon until Julia made me wake up to go for HiFU. I was a bit too lacklustre to walk there today so I asked to be taken in a wheelchair – the slight advantages of being hospital bound. They toned it down a bit at HiFU today so that wasn’t as taxing as it could have been.

Dad said I managed to make him a little happier when I spoke to him on the phone tonight even though I definitely sounded like crap – I am not sure how I did that! I hate the fact that I am causing so many people to worry about me and I wish it could be different. That said, I do appreciate all the care and concern.

When Stevie P called this morning he got the half-awake me. I made him do most of the talking and just chimed in when I had elucidating advice to dole out (Stevie needs it every now and again). I have set him on a mission to make homemade limoncello that he can bring when he visits Australia (he has been threatening this for a while). Now he’s decided he’s willing to get on a plane with 48 hours’ notice. Oh, it’s going to be fun when I play that card!!!

Bloody El made me cry like a baby tonight – but she didn’t mean to. She sent me a link to the song “You Gotta Be” by Des’ree because she heard it on the bus this morning and thought of me. It’s all about being strong and staying on track. It was an exceptionally nice thought and I bear all the responsibility for the tears!

Someone who didn’t make me cry today, but who made me laugh out loud, was Rob S. When Rob’s email came through tonight and I started laughing Brad wanted to know who the message was from. How do I explain Rob? A former student-politics adversary turned friend and professional collaborator. Here’s why I lol’d:

You are braver than a guild hack doing a dirt run at UWA during daylight hours.

It may not make much sense to many people who read my ramblings but to those of you who were involved in UWA student politics in the mid to late 90s it will make perfect sense. I don’t propose to get bogged down in there detail here. Let’s just say that it’s a good thing I only started earning money after the Statute of Limitations for defamation had expired!!! Thanks for the note Rob, I appreciate it.

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Day 24: Galling gallbladder (Monday 21 November)

Finally, an uneventful day.

My day consisted of little more than drops, KLT and HiFU on a third tumour. We were ‘home’ by six.

There was some more discussion today about my inflamed gallbladder.

Yesterday I was informed that the HiFU was likely to have caused the inflammation in the gallbladder thus causing my back and shoulder pain on the right side. This seemed fairly logical as the tumours are heated to around twice body temperature and one would expect that the excess heat has to leave the body somehow and would be likely to cross paths with other organs along the way. Plus, if SPDT and HiFU are killing off cancer cells as they should be then it may be possible that the cells are dying faster than they can be excreted, thus contributing to toxic-overload and possibly impacting on the gallbladder that way. Of course, I am not a doctor, have no medical training and could be completely wrong. Just trying to make sense of it all.

Today during the ultrasound that precedes the HiFU treatment (used to locate the tumour to be treated prior to treatment each day) the doctors saw my gallstone. I have one and have had it for a number of years without complaint. After seeing the gallstone (which was reported on my ultrasound, CT and PET that I provided before coming to China) a new hypothesis about the inflamed gallbladder arose ie that the gallstone is causing the inflamed gallbladder and this is independent of the treatment I am receiving. Medically, this is a likely scenario. However I have had no trouble whatsoever in all the time I have had the gallstone and it is fairly large so I believe it is not at risk of blocking the duct which is generally what causes problems and ultimately the surgical removal of gallbladders. I think my logical deductions could also be true.

At the end of the day it doesn’t matter who is right and who is wrong. I’d like to be right, just because I like being right. I’d also like the doctors to be right because I’m paying them a lot of money to be super-human lifesavers. They will monitor the situation, have given me drugs for pain in case it flares up again and I have been warned off eggs and have had a ‘light’ diet recommended. Brad and I laughed out loud at the last part. I don’t think we’ve been served a meal anywhere in Xian that hasn’t been laced with chili and oil. Possibly the lightest thing I have come across is the dumpling broth at the hospital cafeteria, but even that has a big layer of oil on it. On the two occasions we’ve ordered plates of fresh cut cucumber from menus with pictures that we could point to the dishes have arrived at the table swimming in oil. I’m having enough trouble being understood when I say “thank you” in Mandarin, let alone trying to ask for “dressing on the side.” As for the eggs, they provide me with more protein than anything else in my diet here so I am very reluctant to give them up. I am going to have to look into this a little more.

Brad’s keeping it clean

There were more shenanigans today on the laundry front. Brad decided to go and brave the local whitegoods stores and buy a small, portable clothes washing machine. Julia told us that they were about 500RMB ($75). The ones Brad found were so small that they couldn’t fit both a pair of jeans in them as well as the water to do the washing. Plus there was no spin feature so he couldn’t see that the machines could do any more than we could already do with our bucket. I haven’t told you about the bucket. It’s so good, we’re thinking of bringing it home! It’s far better than the 89c ones from Bunnings. But I digress. As you might expect, the larger washing machines require specialised plumbing which we don’t have in the hotel room so they are not an option. Scooter sent through an excellent link today for a manual-churn camping washer available online for $50. I might buy it for Brad for a special present J.

So given that the washing machine purchase was abandoned Brad enlisted Allison’s help to see if we could get the local laundry to simply wash our clothes, not dry clean them. Although we’re still not exactly sure what they’ll do to our clothes we paid in advance for the service and they accepted them. Tomorrow we’ll see what comes out the other end.

We had to laugh today when Brad found the laundry section in our borrowed Lonely Planet guide (thank you Amanda):

Almost all tourist hotels have a laundry service, and if you hand in clothes one day you should get them back a day or two later. Hotel laundry services tend to be expensive and you might wind up doing what many travellers do – hand-washing your own clothes. (Lonely Planet, China 8th Ed, p97)

You got that right!

Day 23: I’m an idiot (Sunday 20 November)

It’s a big day today. Lylea turns 40 and Judy turns 50. Nice work ladies! I hope you both have terrific birthdays filled with good company, food and fun. Notice I didn’t mention alcohol?!

Here is a note I wrote on Sunday morning to my doctors to ensure that my condition was accurately conveyed to them:

I woke up at three this morning with extreme pain. The pain was in the right side of my back but it spread around my shoulder to my elbow. The pain was not muscular and was not caused by a pull or a strain. The pain started about one quarter of the way down my back. During the night it migrated downwards and reached about two-thirds of the way down my body. Only the right side is painful. I took two of the pain tablets that Dr Yia gave me. They did not work. At about 5am I took two more of the tablets. That did not help either. The pain moved from the back of my body towards the front. At 7am I took 10mg of Oxycodone. This tablet did not provide any relief. I am concerned that I may be experiencing internal bleeding. I think I need a chest x-ray or ultrasound to investigate further. I have never had this kind of pain before. The pain gets worse if I lay on either side or my front. I can only lay on my back.

The doctors met me when I arrived at the hospital on Sunday morning and were eager to solve my latest problem and try to talk me down from my increasing concern (read: early onset paranoia). They gave me a shot of morphine and very soon afterwards the pain melted away. Morphine is not a nice drug at all and I itched all over for a few hours. But, no pain, and that was the name of the game.

The doctors determined that the cause of my back pain was an inflamed gallbladder. I was only 80% convinced about this diagnosis, while duly noting my lack of education in physiology. Fortunately the internet exactly confirmed the symptoms that I displayed. Doctors must really hate the internet and all the DIY medicos that it breeds. But once again, we were reassured. I was pretty worried that a tumour had popped open and started to bleed. I know that would mean surgery and I don’t want to have any more surgery this year. I especially don’t want to have any surgery so far from home. When I had my partial nephrectomy in February this year my four days of hospitalisation turned into six weeks, including two and a half weeks in ICU, not to mention three surgeries instead of one. That’s a life experience I can do without repeating although I do miss Milka (sp?) from ICU at SJOGHM who always had a steady supply of Milo and Frosty Fruits for me (especially important since I wouldn’t/ couldn’t eat anything else during that time).

After the back pain dissipated it was time for P53 – let’s get ready to rumble! I thought I was soooooo clever. I told Brad not to worry, this was just going to be a mild fever – no trouble at all. Uh huh. After a good chat on the phone with my freshly married friend the shivers started. To be fair, they weren’t so bad. But then the temperature came and stayed close to 40 degrees for about six hours. In the early stages I was offered Chinese medicine to control the fever. I declined. Then I was offered a dexamethasone mixture. I declined. AM I AN IDIOT??? After burning up for all that time with no amelioration in sight I finally had the dexamethasone which brought the temperature into a manageable range within an hour or two. The problem over all these hours wasn’t so much the temperature but the fact that I couldn’t even keep water down. I was desperate to rehydrate but each time I did the fluids and their friends would invariably find their way back up and out again into the lined rubbish bin (no bucket available).  Finally after 13 hours in hospital today and seven vomits (but who’s counting?) I got back to the hotel at 1030pm. Since neither lunch nor breakfast had stayed down I was strongly encouraged to eat when I got home – not what I wanted to do. I managed some muesli (Brookfarm Gluten Free that I’ve brought from Australia) plus a small banana and a Milo. That did the trick.

Of course my back pain started up again just as the fever subsided. Dr Yia gave me some Oxycontin for the pain but one tablet didn’t scratch the surface so he allowed me to have another one. Oh, I’ve also been told not to take these or any other drugs unless I ask permission first – they’ve cottoned on to me! So by the time we made it across the road to the hotel I was already away with the fairies. I don’t think I made a lot of sense last night so if I had any contact with you after 8pm AWST it might be best if you disregard anything I said. It was the drugs man…

Braddy gets a gold star today for being ridiculously patient and supportive all day. I have no idea how he got through the day. He basically sat in the stark, white room in an uncomfortable hospital chair all day and waited for me to go through the fever to take me home. He fed me water through a straw even though he knew what would come next, caught all my vomit with the bin and tried to cool me down with damp cloths. In fact, I think he might deserve a Scratch ‘n Sniff sticker too – maybe Strawberry Shortcake or something delicious and far removed from anything that he would have smelled in the hospital today!

Spoke to Mum and Dad over the past 24 hours or so. They are freaking out. They’ll probably freak out more when they read this in print. Come on – I gotta have some fun! All I can say is that even though I am having a tough time here it is nothing like when I was in ICU, on every drug under the sun after three surgeries in 11 days. That’s something positive, right? J

This was a tough day. Glad it is over.

John S – just so you know every time I type an apostrophe I do so with grave trepidation that I may put it in the wrong place and in doing so be judged as an under-educated GenY-er. The stress!


Day 22: The Muslim Quarter (Saturday 19 November)

I have been a bit down today because two of my best friends are getting married in Melbourne and I can’t be there to share the day with them. I have been in touch with them by phone and text throughout the day but of course it isn’t the same. This wedding has been nearly ten years in the making so it was one that I really did not intend to miss. I sent my “telegram” to be read out which was faithfully delivered, following an extremely witty speech by Ben. The happy couple demonstrated excellent taste and bought Louis Roederer champagne for the occasion. I just hope they saved a bottle so that we can celebrate together when I am back in Australia! Rachel and her groom (who issued an edict that he not be mentioned in this blog) have been great friends of mine for many years. They are always there for the highs and for the lows that life has to offer. Together we’ve found that there is little that a Chelsea pizza can’t fix. I hope there will be many more good times to come for us all. Happy wedding to Rachy and her red-headed mystery man.

Mozzies

In the middle of summer in Perth, by the water, I expect to be eaten alive by mozzies. It’s normal; par for the course during summer. What I don’t expect is to be eaten alive by mozzies in a hotel room in the middle of winter in China!!! I woke up in the early hours of this morning to find myself scratching my hands and arms because I had been attacked by a mosquito. Unbelievable. We’re not exactly sure how they got in but it was probably when Brad had the windows open trying to get some fresh air into the room. Just another trial, but at least it was a minor one on the scale of things.

Am I an alien?

When I woke up this morning I was wet through again from the nightly fevers. I touched my skin to see just how much sweat I had excreted and instead felt something very strange. I don’t mean to sound like too much of a freak but what I felt wasn’t sweat. It was more like slime.  Actually it had a similar consistency to ultrasound gel. Gross. I don’t know what’s going on here but that’s not normal. My body has reacted to many medical treatments over many years in many different ways and excreting slime is definitely a turn up for the books. The gel was only around my sternum, not under my arms or anywhere else where sweat normally gets produced. Guess I am going to have to see what the doctors have to say about that one tomorrow! (PS – they assured me it was just sweat).

Free day

We mooched around the hotel room for a lot of the day and finally got organised to go on an outing after 2pm. I felt OK today and didn’t have any more fevers and had a reasonable amount of energy. We decided to head into the town centre and check out the Muslim quarter. We weren’t sure how successful we’d be at getting the taxi driver to drop us where we wanted to go but the sun was shining upon us today and we got it right first time.

We spent a couple of hours slowly wandering around the streets in the Muslim quarter and investigated the different types of food for sale that we hadn’t seen before. It seemed like every second shop was selling walnuts and Chinese dates. Brad read today that the pomegranate is the official flower of Xian so it was fitting that we both had a pomegranate juice while we were out. We stopped for a late lunch at a little place that served us a mutton broth with glass noodles, little bits of something green and tiny squares of something that was a cross between pasta and gnocchi. On the side we got whole cloves of pickled garlic and chili paste. It was a very tasty soup but neither of us could finish a whole bowl. I watched in awe as other patrons sucked down the garlic cloves whole and spat out the skins. I really wouldn’t want them breathing on me.

After lunch my energy waned quickly so we went back to the main road and got a cab back to the hotel. We thought we were really splurging today by getting a taxi instead of the MRT, but the cab fare was only about $3 each way so we’re obviously a lot closer to the town centre than we realised.

Day 21: Can I go on? (Friday 18 November)

Can I go on? Is this too much for me? Should I just give up now?

These were all the thoughts running through my head, and murmurings coming out of my mouth this morning.

I felt like hell when I woke up.  I could barely get out of bed, shower and dress. I was exhausted.

I had one fever before bed last night and another one in the wee hours this morning, so I was wet through again. I don’t feel like I am making any progress, and I think the side effects of these treatments are worse than chemo.

I showed up at the hospital for the blood test this morning and was a wreck. I had no idea how I would or could muster the energy to go through with SPDT and HiFU today. The doctors came in to see me and decided that given the state I was in I should have a day off from treatment. They hooked me up to the usual vitamins and KLT, plus some other stuff, and I just slept the day away.

The blood test revealed that I am anaemic again which at least provides me with an explanation for why I am so out of breath and out of energy at the moment. At least I’m not imagining things. All the other indicators from the blood test were normal.

It’s hard to pin down an exact cause for my anaemia but apparently it is quite a common side-effect of cancer.

What’s harder to explain is the incessant fevers that I’m dealing with. Today my temperature nudged 38 for the whole day. This evening back at the hotel room I burned up again and wet through all my clothes. It just seems like it is never ending.

The only explanation for the fever that we can come up with is that it must be a by-product of the SPDT, HiFU, or both. The HiFU zaps the tumours at between 65-85 degrees Celsius inside the body. That’s hot. Surely the excess heat has to get out somehow? Surely the process of both these therapies that cause spot-heating internally could account for my fevers? The doctors here say no. They have theorised that my fevers are as a result of the climate here, or that maybe I’m getting a cold. I have travelled to many places in my time, and I have had many colds and flus. I don’t agree with this diagnosis and, of course, I told them that. They tell me that no other SPDT or HiFU patients, even with more and bigger tumours than mine, experience fevers like I am experiencing. Maybe I’m just special?? We live in hope that the fevers are caused by the tumour cells dying and the body excreting them.

The medicos decided to stick to plan and keep tomorrow as a day off. When I go back in on Sunday I will ask for a B12 infusion and see if that helps the anaemia. Meanwhile I am going to try to eat as much meat as I can get my hands on, which isn’t too easy around here. Maybe I will have the strength to venture out tomorrow for lunch or dinner and go to one of those steak houses that Geoff suggested.

Thanks to Kylie for recommending Midnight in Paris. It was a good, relaxing Friday night movie.

A spiced up, spruced up version of my SDT treatment!

Day 20: Just the medical stuff

No vitamins or KLT. PDT was five minutes longer than usual on each side. SDT as normal. HiFU, tumour 2, 30 minutes, 650 watts.

Day 20: Brad’s undies (Thursday 17 November)

Today I had to wear Brad’s undies. The things I do.

Long story short – I ran out of clean underwear this morning. There was no time to try and wash some and dry them with the hairdryer, and going commando wasn’t an option for a day in hospital. So, boy shorts it was to be. Given that this quest is all about trying to stay alive, narrow concepts like embarrassment and shame have long been abandoned by me. Of course the girls (Allison and Julia) found this state of affairs very amusing. I couldn’t blame them for that.

A few minutes before we were due to leave the hotel I was hit with more pain. Aaaaarrrrgggghhhh!!!! That’s it. I am not going to push through it. I am turning to drugs. Beside my bed I found just one Panadol. Not enough. So then I took 10mg of oxycodone, an opiate analgesic. Niiiiicccccceeeeee.  I went off with the fairies for an hour or so, blissfully pain free.

I arrived at the hospital ready for SPDT a little vague, but basically fine. I was a good little patient and disclosed my prescription drug use, which they seemed to understand and were not too worried about. I was just about to get up to get undressed ready for the PDT treatment when out of nowhere I starting vomiting. Thank goodness for plastic lined rubbish bins. The vomiting episode delayed my treatment further. When everyone was confident that the vomiting had stopped and that I was fit for treatment I did the PDT. Then I got into the SDT bath and waited. And waited. I waited in the bath for about half an hour. Just my luck, the machine decided to pack up today. So after getting wet for nothing I got out and dried off to get ready for HiFU. Of course, just as I was dressed and my hair was dried the SDT machine started working again. Good old Murphy and his law.

We decided to relax awhile and have some lunch before HiFU rather than trying to rush to fit in SDT. Allison generously shared her grapefruit with me for lunch. It was like nothing I’ve ever tasted. Aussie grapefruits are generally quite sour, and only a bit bigger than a large orange. These Chinese grapefruits were giant, sweet and supersized. The skin was really thick, as was the pith. The fruit itself was not as sweet as an orange, but was definitely on the sweet side of things. It was almost as if the fruit had been injected with sugar during the growing process.  Although the grapefruit was very large, it wasn’t juicy. That suited me just fine. I like citrus fruit but I hate it when you get juice running down your arms and hands. This grapefruit was my kind of fruit!

At HiFU today they started zapping the second tumour around the kidney area. This one is smaller so I only had to stay under there for 30 minutes and I tolerated it easily.

After HiFU I went back to have the SDT bath which proceeded without a hitch. Given all the ups and downs of the day it was decided that we should abandon the vitamin and KLT infusion for the day and just send me ‘home.’ No arguments from me. I went back to the hotel around 5pm and went straight to bed. Of course, even resting is not going smoothly for me right now and just after I got off the phone with my Dad around 6pm I got yet another fever. It broke about three hours later and I had to go digging around for some of Brad’s clean clothes to wear to bed since all of mine were due for laundering.

Poor old Brad is having a really tough time of things at the moment. Today he was miserable and absolutely everything is making him tear his hair out. Since he is the resident administrator and trouble-shooter he bears the brunt of the day to day challenges we face. The hotel seems to be playing silly buggers with the hot water temperature, so we now have to turn it on and let it run to see whether it is going to be hot or not. If it isn’t then Brad has to have a negotiation with various hotel staff to get the thermostat turned up again. When it comes to dinner, if we order at the hotel we have come to expect that only about 50% of the things that we order from the menu will actually be available on any given day. The food isn’t delivered to the table at the same time either, so it can be frustrating to be nearing the end of the meal and then have another dish show up. Recently we were served a dessert dish right in the middle of the meal (we didn’t realise it was a dessert dish when we ordered it). As with most hotels, anywhere in the world, the air-con doesn’t work. The control panel says five degrees but the actual temperature in the bedroom is closer to 30. Brad had someone come and look at that but nothing improved. Anyway, these are just our *first world problems* so we need to suck them up and just be grateful that we’re allowed to be here in China at all, and that I can access the advanced medical technology here.

Thanks to Ellie and Pauline for organising a package of essentials for us today. I thought my request would be a lot easier than what panned out. Sorry about that!!

Banana disclosure: I admit that both today, and yesterday, I only ate half a banana and left the other half.