Day 48: Penultimate day of treatment (Thursday 15 December)

Happy Birthday to Mr Playle in The Berra. May you celebrate the auspicious occasion in whatever way the best Canberra bureaucrats do 😉

Today I was mysteriously moved to the so-called “VIP” room at the end of the corridor. It happened fairly unceremoniously – ie – I showed up and all my things had been moved. There didn’t appear to be any reason for the move and one never was revealed. As you might expect, the room didn’t have any obvious hallmarks of a VIP facility.

I was in HiFU hell for three hours or more today. It took three attempts to accurately locate the pelvic tumour and I had an hour or so of zapping on each. Lucky me – a fever came on while I was stuck under the HiFU machine so I got the cold shivers followed up by overheating and sweating. What a delightful afternoon.

Later on I was offered a Chinese medicine herbal drink. I’m still not entirely sure why, or why now, at this late stage in proceedings. I got the impression the medicine was designed to improve my overall wellbeing. Anyway, I drank the concoction – it was bearable. I don’t know how much good one cup of hot herbs could do in one evening and the following morning but I did it anyway. I’ve asked for the recipe so I can get a Chinese herbalist at home to reproduce it so that I can drink it on my break in Perth.

It was another tetchy day. Brad and I have so many things running around in our heads. It’s nearly time to leave. We don’t know if this is working or not. We’re scared. I’m sore. It’s confusing. There’s a long list of challenges but there’s only one more treatment to go – I suppose it doesn’t seem real that it (this first tour of duty) is really nearly over. We need to figure out if we will come back, and assuming we do, we have to figure out how we’re going to handle the environment which will be even colder. Decisions for another day.

Mum left today. Thanks Mum for helping me the past couple of weeks with all the mundane stuff. Not much of a holiday for you but I appreciate it. One thing though… how on EARTH did you manage to get on a plane with a bottle of bleach in your bag???!!!!

Thank you to Paul, Lylea and Tonya for calling tonight, for putting up with my tears and garbled phone response. You guys made my day. Sorry to those of you who couldn’t get through on my Chinese phone – Belinda, Daniel and Teresa – I have no idea why the system didn’t let your calls through but I thank you for trying. I’ll be back on Aussie mobile very soon so we’ll talk then.

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Day 47: Blase day (Wednesday 14 December 2011)

Trying to piece this day together belatedly (Sat 17 Dec)…

Had SPDT, infusions and started the three-day ordeal of extra-long HiFU all afternoon where two tumours were zapped in succession.

One thing I remember about Wednesday is that I was really quite low all day, and night. Poor old Gavin got tears when he called on Wednesday night but he was a trooper in helping to lift my spirits. Thanks Gav.

We met Jill today who is the sister of Pearl, another of Dr Yan’s international patients. Pearl has come to Xian for P53 therapy, as SPDT and chemo are no longer suitable for her. Jill is a firecracker! She’s Taiwanese by birth, has lived in the USA for 40 years and travels regularly to Beijing and Shanghai (among other places) for work. It was a breath of fresh air to be able to talk to another English speaker, if just for a few minutes before she jetted off for the night.

I wasn’t in the mood for anything or anyone by night’s end. Mum went out and got me takeaway from the restaurant that we’d eaten at the night before. The rest is a blur.

Day 46: Almost a Wonderful Time (Tuesday 13 December)

Yesterday’s results were not very encouraging but I’ve realised there are several “buts,” and I need to be more positive.

First, it may be too early for any evidence of impact from some of the treatments to be showing (ie P53), and the tumours blitzed with HiFU may be inflamed and showing higher activity readings than what is actually reality. Apparently it can take up to three months for evidence of DCT to work too.

The other thing is that the tumours have not proliferated. In the ten weeks from July scan to October (or there abouts), somewhere between 7 – 10 new tumours grew. In a similar period since the October scan to now, it is most probable that no new tumours grew. On one hand, it may be nothing as I understand that they tend to grow in bursts. But they were definitely fast growing tumours and I should probably take some heart that there aren’t new ones and they are not obviously bigger.

Time to try and focus on faith and hope, and probably a bit of love too. All three of the above have been waning.

I woke up this morning wet-through again but ho hum… At least the fever had passed and I could actually eat something so I picked at a few basic things from the buffet.

Had drops, KLT, vitamins, some new medicine for my liver…

Everyone was super polite to each other today and apologies flied around thick and fast on the back of the trying times from yesterday.

I forgot to mention yesterday that Brad went out and bought a $30 induction hotplate complete with a couple of pots so that we can actually lightly cook some veges ourselves without all the oily, spicy additions. The machine works like a charm. It’s a bit late in the day for it but it’ll be here waiting for us if we return. If not, doesn’t matter.

In anticipation of my break at home I’m also getting ready for a new and improved approach to diet and cancer nutrition. I have bought a reverse osmosis water filter with mineraliser to try and keep my body as alkaline as possible (cancer loves acidic environments). I’ve also checked out the Choice comparisons about cold-pressed fruit and vege juicers and am deciding which one to get. The non-centrifugal juicers seem to be far better than the conventional ones, and Daniel and Bryan swear by theirs so that’s good enough for me! I think I’ll buy something on the first shopping day after Christmas in the hope that it will be 20-50% off. If you have a cold-pressed juicer that you recommend please let me know the brand and where you bought it. I would prefer one with as few attachments as possible. The less ‘bits’ the better.

Not quite a “Wonderful Time”

We haven’t really been able to show Mum a very good time here in China – disappointing, though it wasn’t exactly the point of the trip. Fortunately Gary from Queensland agreed to let Mum tag along on his visit downtown this afternoon while Yan stayed resting after her treatment. Those two crazy kids walked (or stalked?) the Xian downtown for four hours and returned with blisters and a few tourist-style memories. The Belltower was closed but they checked out the Muslim quarter, the Mosque and maybe one or two of the significant pagodas (not sure). They tasted a few of the delights on offer in the city but I don’t think they could tell you what it was they actually ate. Been there!

Mum’s been walking in the park next to the hotel and found that there’s a couple of restaurants hidden in there. One’s called “Wonderful Time.” She has been offering to take us there for days and finally everyone was in the right frame of mind to make it happen. Gary and Yan joined us and we had a good time indeed. It turns out that we didn’t actually go to Wonderful Time restaurant because it was closed, but we went to the other one instead. In any event, it was nice to be out of the hotel for a little while with some other people to talk to.

Day 45: Results? Take two (Monday 12 December)

I’m finally getting around to writing this entry on Wednesday, 14 December. There has been a lot to take in in the past couple of days. I’m not sure if any of the information that I have makes sense, and we have been desperately trying to digest it.

But first… I spent another night sodden in my own slimy sweat. My temperature yoyo-ed throughout the night and broke several times. I didn’t bother to change my bedclothes because I knew they would just get wet again and I’ve already explained the saga of clothes washing – to be avoided wherever possible.

I was due to meet the doctor at exactly 10am to discuss my PET results. This happened at 11am and I received no treatment during the wait so that was wasted time. Such is life. My temperature remained high, though not at fever point, and I was getting anxious (and probably a bit angry too).

 Armpit tumour/s

The first bit of news I got was that the tumour in the armpit is virtually inactive (according to the SUV max value), though it has not reduced in size. This may have been good(ish) news but for news I received the following day (Tuesday) – I don’t just have one tumour under my arm, I have three. According to the doctors here these three tumours are all evident on my October scans from Perth and so they’re not new. Well, they sure are new to me, since the reports from Perth (oral and written) described just one tumour under there. I can’t win. Anyway, here they now say that two of the armpit tumours are active (very low levels) and one is inactive. What the hell am I supposed to believe?

Main kidney tumour

This one’s not flash. It is about the same size as before (though I don’t actually have accurate measurements from either this scan or the Perth ones) but it is the most active of all the tumours. It rates at 20.2 SUV max. A “good” SUV result is apparently less than four.

Liver tumour

The vexing question of whether or not the disease has spread to the liver has finally been confirmed. I am told that there is a 1.5cm tumour in the liver.

Abdominal and pelvic tumours

The abdominal tumours are difficult buggers to pin down. They are still there and there’s no evidence of cell death. But they haven’t grown. Their SUV value is around 14 (way too high). BUT… these tumours have been treated with HiFU (the one in the kidney has not). HiFU causes a lot of aggravation and inflammation which I’m told can skew the SUV reading. So, it is *possible* that these tumours may be a little smaller and less aggressive than they appear at first glance, but we won’t be able to tell this until after the effects of HiFU have had a chance to wear off in the days and weeks ahead. This is definitely a fingers crossed scenario.

SUV Max

I am pretty damn angry about the quality of my so-called results from today. The people here have had all my scans for eight weeks or more and they could easily see that none of my reports mention an SUV max value. Essentially I was told that it was impossible to determine whether any of this treatment (seven long, hard weeks and over $100,000…) was working because they didn’t have my SUV max values from the October scans to compare with. This is poor form. I have now scrambled around to beg doctors in Perth to get in touch with the scan people to see if they can retrospectively apply the SUV values to the old scans so that I can provide them to the people here so they can do a comparison. Why couldn’t I have been told that I needed these figures to do a comparative analysis, weeks ago? I am not impressed.

Future treatment in Xian?

The doctor has recommended that I return to Xian to have four more weeks of treatment, much the same as I have been having thus far with the possible addition of low-dose chemotherapy (which apparently supports the effectiveness of the SPDT but does not have the damaging side-effects of ‘normal’ chemo). That’s something we will mull over while we’re back in Perth. I am going to need some better interpretation of the results before I sign up for that. Oh, and some evidence that the treatment has actually done anything for me would be good too.

Coming home for ChristmasI have received a lot of conflicting information about whether it is medically advisable for me to take a break from treatment here and come home for Christmas or not. First I was told it was OK for me to leave this weekend, then that was changed and it was recommended that I stay an extra two weeks and basically go home on Christmas Day. No thanks. My mental health has got to be worth something. I have to leave here before I go insane or strangle the next person who tells me one thing, then something different then something different again – all in answer to the same question.

So that’s that. We’re leaving Xian on Saturday morning and will be home in the early hours of Monday morning. We are taking a bit of a roundabout way home but we had to use up stupid dodgy Qantas tickets that we’d bought and for me it was preferable to take longer to get home but to get out of here and into warmer weather ASAP.

As for how long I can have to rest in Perth, well, that’s another mystery. I have been told: 15 days, 20 days, 30 days, about a month, shorter if I don’t feel well and need treatment, longer if I feel well and don’t need treatment. Yes, well that’s clear as mud. 

The rest of the day

The rest of the day didn’t improve. Tensions were running high – mine in particular but Brad’s were also strained.  On the face of it the results do not show any particular progress. There may be some progress, but we don’t know. The disease may even be more stable than before, but we don’t know that either.

I decided to just stick it out for another week and have five more days’ worth of treatment. What’s another $10K at this point? I’m here, might as well suck it up – but a week is definitely my limit. That decision meant drops which didn’t start until 4pm so we had another late night at the hospital. Added to that my fever kicked up and stayed around 39-39.5 all afternoon.

It was an afternoon and evening of confusion, sadness, crying, fear, numbness, frustration and a myriad of other emotions have all blurred together.

Day 44: Warrior woman wandering the Terracotta Warriors (Sunday 11 December)

I had no pain for most of the day since waking up for a short time in the wee hours. That was nice. I got up just before the buffet closed and had some sustenance then promptly retired back to the warm bed. When I finally got up for good I felt reasonable so figured today was the day to try and play tourist and head to the Terracotta Warriors.

Mainly I went to the TW because it seemed silly that I would’ve lived here for two months and not taken the short cab ride to one of the world’s most famous archaeological discoveries. That, and I thought Mum and Brad should see TWs and I knew they wouldn’t leave me in the hotel and go without me. When we got back they both said they weren’t really that keen on going but they went because they thought each of the rest of us wanted to go. Anyhoo – we’ve all been now so let’s tick that box and move on.

We had a pretty damn lazy day so we didn’t make it out of the hotel til nearly 3pm. Our first challenge was to get a cab to agree to take us there. It’s only a 30-40 minute drive but that seemed to be off-putting for most drivers. It may have been near to change-over time and we know how that works in every city in the world! But by paying over the odds we found a nice, non-smoking driver with a warm cab who would take us, wait, and bring us back. Excellent.

By the time we arrived at the TW it was cooling down quickly. Actually, it was bloody cold. No, it started off bloody cold then it became bloody freezing.

We got to the ticket gate and as you might expect at any famous tourist destination, were harassed by guides helpfully offering their services. We declined. Then we declined more strongly. We bought the tickets and naively assumed that the entrance located 10m away from where the tickets were being sold would be the place to enter the facility. No, no, no. That was the entrance for people who were taking the buggies. We apparently had walking tickets (no other kind were offered) so we had to walk 500m to the other entrance. The other entrance wasn’t really the other entrance either. It was the start of a winding 1km walkway of food and trinket vendors of course! Only after you had the chance to buy useless bits and bobs, some made in China and some not, did you reach the actual entrance to the TW pavilions. At this point you could easily see the buggy entrance that we weren’t allowed to use.

All this was quite a hike for me. I was freezing and exhausted. Ordinarily it would have been a nice stroll and I probably would have come away with some gifts and maybe some jewellery I would have worn once or twice. But given how immobile I have been, plus the fact my HB is on the down-and-out again it was not fun.

We made our way through the real entrance and then walked another who-knows-how-many metres to get to the TW pavilions (big sheds that cover the TW themselves).

I went into the main pavilion, had a look (yep, statues of warriors – made from terracotta – check) and found a seat to park myself on. Then I sent Mum and Brad off to go and see the rest of the sights and soak in everything that the TWs had to offer. I was out of breath, freezing cold and my lower back was aching on the right side.

Mum came back with a hot green tea for me which was a total lifesaver. It warmed my hands and my body and I’m sure it gave me the energy (physical or mental, I’m not sure) to carry myself out of there back to the cab when we were done.

On the walk out Brad couldn’t help but treat himself to the Magnum icecream that we’d noticed in one of the freezers at a stall on the way in. Mind you, given the weather I’m not sure if the freezer was actually turned on – it probably didn’t need to be. Brad’s been hankering for a Magnum since we’ve been here and was terribly disappointed a couple of weeks back when he specifically went to a supermarket to buy himself an icecream only to find that the icecream cabinet was locked and no one had the key to open it and sell him one. Today he made up for it. He bought two Magnums and one Drumstick and was as happy as a kid in a candy store for the rest of the walk back to the cab, and possibly even for a little longer than that!

If you find yourself in Xian, definitely go to see the Terracotta Warriors. If you don’t find yourself in Xian, it would be hard for me to recommend that you make a special trip for the purpose. There’s some really good pictures on the internet…

When we got back to the hotel I still wasn’t really warm and was starting to shiver. I know that sign – fever coming on. Not a cold, not a flu – just a fever. I went to Mum’s room so she could run me a hot bath because the hot water in our room has been highly erratic and usually takes half an hour to warm up at all. Then Murphy came for a visit. Mum’s steady flow of hot water disappeared and the water was brown. We got the staff involved and got the taps running to try and get the water through the pipes (which is the only thing that works in our room) and after a significant wait the water did heat up and I got my bath. While I was waiting I was piled high with jackets and robes trying to stay warm, all the while shivering and hoping beyond hope that we could get some hot water.

I had my hot bath but it was not a panacea to my impending fever. During the night I heated up to just under 39 degrees. I only medicated with Panadol and the temperature went up and down all night. I figured there was no point going to the hospital and that if it continued they could give me something else when I arrived the next morning. It wasn’t a pleasant night.

Day 43: Results? (Saturday 10 December)

Bwwwwwaaaaaahhhhh!!!!

What on earth was I thinking? *slapping myself on the wrist* When I was told yesterday that I’d get my results this morning, I should’ve moderated receipt of this information with the fact that any reference to time is calculated in Chinese time (it’s sort of like Island time or Broome time but is nowhere near as relaxing or balmy).

I arrived at the hospital on time at 10am and was still waiting at 1030am for someone to come and do my blood test. In that respect, this place can be a lot like Perth hospitals… To be fair though, the nurses are generally very prompt and efficient so I guess that was just a cheap shot.

The nurses finally showed up but they were definitely not interested in using my PICC line to take blood. They faffed around a bit and pretended to try and take blood from the line but came up with some incomprehensible excuses about why it was too hard so they really just wanted to stick a needle in my hand. I didn’t have the energy to argue so a jab in the hand it was to be. To the nurse’s credit, she got the vein first time with minimal pain. The needle appeared to come from a sterile packet too…

Yesterday the interpreter said that the doctor would discuss my PET scan results with me today at 10am. This morning she said that it might be around 11am. At 11am I was told the doctor would be in a meeting and couldn’t see me until later on, but in any event, he wanted to do more comparison studies before he presented the report to me so he would see me on Monday.

I tend to prefer the direction approach (have you picked up on that)? The Chinese do not. I know this is a fact, but it doesn’t make it any easier. I feel like I’m being at least misled, if not lied to. But I’m supposed to let that go in favour of accepting and understanding other people’s customs and cultures. There’s one catch to this – I’m paying. A lot. What about my culture and custom?

I was clearly exasperated and explained to the interpreter that even if the doctor couldn’t give me the full set of results I would still like to see him and get any preliminary results that he could offer based on his cursory perusal of the images. After that request just after 11am I never saw anyone but non-English speaking nurses for the rest of the day. I was definitely put in the ‘too hard’ basket that day.

I wonder what the Mandarin translation is for “Not happy, Jan?”

Day 42: Disappearing Dumpling Lady (Friday 9 December)

Thank goodness my general feeling and demeanour improved significantly from yesterday. Today was a much better day.

Today is the day for my first progress PET scan. I won’t get the results until either tomorrow or Monday.  Fingers crossed. And toes. And everything else.

I had to do SPDT early at 730am today because I was told that the contrast for the PET scan could interfere with the efficacy of the sensitising agent for the SPDT. So it was SPDT first, then off to the scanning area on level one for the PET. The procedures seemed the same as the ones that I’ve had to follow in Australia, so that was reassuring. Mum and Brad waited patiently while I was indisposed as I could not talk or move for 40 minutes after the contrast injection. The scan itself was quite quick and then finally I got to have my first food of the day after it was all over (I seized on the apple that Mum had in her bag).

Around mid-day we were back at the hotel with the rest of the day clear from any further treatment. We had a bit of lunch then I went to bed for the afternoon and stayed there til after 6pm. Mum went off walking and exploring and Brad was head-down-bum-up working away on the computer. I think I chose the better use of time for the afternoon!

Each week we try and reserve one night when I’m feeling well to go to the dumpling place (the one where the lady speaks a little English). This week, tonight was the night. At seven we set off for dinner and easily got a cab to drop us near the restaurant. We walked around the complex where the restaurant is located passing the many jewellery stores, McDonalds and a Subway on the way. Mum was relieved that we were not taking her out for Subway.

I was expecting to see more lights on the strip beyond the Subway – it seemed unusually dim. The tea place was lit and open and the dumpling place is right next door. Don’t tell me it’s closed! We arrived at the restaurant and got a very rude shock. The restaurant was closed tonight – there was no doubt about that. But the premises had also been gutted in the week or so since we’d been there and there was no sign of the delightful dumplings or the people who served. We were devastated! We wanted to show Mum a slightly different style of Xian cuisine, and chow down on some dumplings and eggplant with tomato ourselves. It was not to be. We ended up eating at another place close by with questionable hygiene standards and where each dish that we ordered came with at least a cup of oil per plate. Though I did quite like the style that one chef displayed – he wore his PJs under his chef’s whites. Guess it’ll speed things up for him when he gets home to bed!