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?”

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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!

Day 41: Fatigue, pain, misery and fear (Thursday 8 December)

Two good days and one almighty shit of a day. That’s the rollercoaster ride of my life.

I awoke sometime in the early hours with pain in the right flank. I decided to ride it out and skip taking any drugs. By get-up time things had not improved. I stumbled to breakfast feeling bloated and inflamed, in pain and generally feeling miserable. I didn’t want to speak. In fact, I barely spoke all day.

Today was a day of fatigue, pain, misery and fear.

SPDT was very onerous. Afterwards, I returned to my room and slept through for four hours or so while I was on the drip. I was woken up to go to HiFU and reluctantly made my way down to the treatment room in the basement. There were tears. It was just a bad, shitty day.

The only upside of the day was that it finished relatively early. We came back to the hotel and settled in. There was no way I was leaving the room to go out in the cold for anything so Brad was on take-away duty again. Mum bought a bunch of fruit from the market so we had that to munch on too.

After some food there were more tears. Lots and lots of them. I couldn’t stop thinking about what would happen to me if the scan reveals that the treatment isn’t working. Where would I go? What would or could I try next? How much time would I have to live? I made Mum cry. Then Dad rang, and I got him crying too. I think the barrage of bad thoughts was kicked off by two bad dreams that I had, one last night and one during my afternoon nap.

I just don’t want to die now.

Day 40: Never give up (Wednesday 7 December)

I awoke this morning to very confronting news that my friend with bowel cancer has been admitted to hospice. This is the thought that has been central in my mind all day. Life is not fair. It’s just not. I hate you cancer!!!


It is hard to believe that I don’t feel too bad for the second day in a row. Not ‘good,’ or anything, just not too bad. I’d love to think that I’m turning a corner but I think that kind of wild thinking is just a touch too optimistic! Nonetheless, today there’s been no pain, no tears, no particular weakness, no over-reaction to SPDT or HiFU – yay!

Today I had SPDT, Vit C, B6, HiFU (11th session), KLT (only one bottle instead of the usual two) then the final instalment of DCT (4 bottles). It’s good to get all this treatment out of the way but it did put a spanner in the works for our dinner plans with the Queenslanders. After HiFU at 430pm it was about time to go home, then I got the surprise bottle of KLT which I was assured I wasn’t having today. Then out of the blue I was told about the four bottles of DCT that were coming my way. I shouted. It was polite, friendly, shouting – but it was still shouting. I think the literal interpretation of the response from the Chinese was “tough titties.” So it is 9pm and I am still here at the hospital, trapped like a prisoner!!! Thank goodness Brad went to the food hall and got some takeaway for our dinner.

Mum was on Jaye-sitting duty today while Brad stayed in the hotel and worked. Well, he did as much work as he could given that the hotel’s Internet was down (not that it’s proven to be very reliable at the best of times).

We had a good old chat today with our new Queensland friend and shared some stories about ours and their cancer treatment experiences in Australia and it was scary just how similar our stories are. Honestly, the Australian cancer treatment profession has a lot of answering to do. So does the Federal government (past and present). It is just NOT GOOD ENOUGH that cancer patients are left to rot and die in Australia if surgery, chemo and radio can’t fix them. We are supposed to be an advanced, modern economy and democracy with all the privileges of advanced healthcare yet we are denied a range of relatively-basic medical options. Time for us all to be asking WHY?!

I have had a bit of a look online to see if I could replicate any of my Chinese treatment in Australia. Nup. At first blush it seems like there’s only a couple of mini-HiFU machines in Oz that only do prostate treatment by probe, DCT is only very selectively available to patients with some blood-borne cancers, KLT is not approved for import and use as far as I can tell, many medical oncologists poo-poo high dose Vitamin C injections and only a few clinics provide it and there are no SPDT or PDT machines working in Australia (there was one, but it closed down and a new PDT trial is due to start in Melbourne soon).

What else today? Nothing, really. Been stuck in hospital for nearly 12 hours now and waiting to go home. We want to have a cup of Milo and watch some Mad Men!

Day 39: Beijing Duck (Tuesday 6 December)

Today was my best day in weeks. I felt mildly human again, had some colour in my face and a bit more ‘tood.

I had my vitamins through the canula in my arm and it really hurt again. I thought that was odd because the P53 didn’t hurt at all when it went through. The nurses had another go at unblocking my PICC line and hit paydirt. Thank goodness. It will make the next couple of weeks a lot easier to have my PICC functioning rather than relying on a fairly tenuous canula in my hand to last the distance.

Mum’s volunteering to do the drops yesterday meant that she didn’t get asked if she was up for it again today. Julia knows when she’s onto a good thing! The first bottle went down in around an hour and a half – it felt like the second bottle took six hours. It didn’t take that long, but it did take a lot longer than the first one. No rhyme or reason.

 

I had P53 again sans fever. Another minor victory. Then, there was HiFU. I have been dreading getting back under the HiFU machine for fear of aggravating my gallstone and or getting more unexpected fevers and pain. But, no pain no gain as they say. It took ages for the doctor to locate the right tumour to zap with the ultrasound before putting the HiFU laser in place. Finally after some time and plenty of prodding the tumour was found and I was squished under the machine. I was due for 34 minutes of zapping. I got four minutes then the power to the machine went out. Mamma Mia. 

I was literally sandwiched in the HiFU machine and couldn’t just hop out because there was no electricity to raise the overhead part with the lasers in it. The only thing for it was to release the fluid in the silicon bubble that the lasers go through. That took some time but finally it was loose enough for me to wriggle out from under there.

I got a visit this morning from Dr Yan and the junior doctors and we made some plans for my first progress scan. Although I have asked many times already without success, I asked again how long I could have “off” treatment over Christmas if the treatment is working. This time I got an answer – four weeks. It will depend exactly what shows up in the scan and what treatment protocols Dr Yan recommends for the New Year but I can assure you that was music to my ears. Four glorious weeks in the stinking Perth heat, with family and friends, with my own food and kitchen, and our own comfy bed.

One of the nurses who tends to me made a dinner suggestion the other day. She recommended a place close by that serves Beijing Duck aka Peking Duck. Yum!!! I have been waiting for a day where I was feeling well in order to go and try some fat duck in Xian. Today is the day. Turns out that the restaurant is very close to the hotel in Coca-Cola Street. It was BLOODY COLD outside but since I was feeling ok we walked there and back. We didn’t know if we would have any luck finding this place. I had the name of the restaurant written by the nurse on a scrap of paper in tiny Chinese characters. I figured I could match them up with the restaurant signage. Brad laughed at that suggestion. One of the two staff who speak some English at the hotel drew us a mud map to give us an idea of how far along the street we could expect to find the restaurant – I was dubious. But we got there in the end. Or, at least, we arrived somewhere that served Beijing Duck!

I wasted no time placing our order by pointing to the duck on the inside cover of the menu. The waitress got the idea. In no time a massive, fat, roasted duck was presented to us then carved in readiness for eating with Hoisin sauce, pancakes, spring onions and so on. This sure wasn’t like Peking Duck at home. For a start, there was actually meat on the duck. We were served a plate of skin and a plate of meat along with the usual accompaniments. It was too much for three but that didn’t stop us. It was a good thing I only had fruit for lunch!

Day 38: A pain in the aaaaaaaaa…..rm (Monday 5 December)

Ha! Bet you didn’t think I was going to say arm, did you? 😉 Yes, well my PICC line is blocked again and this morning the nurses couldn’t budge either of the pipes leading into the line. There was talk of pulling the line out altogether, which I was not so keen on because when I had it put in in Perth I was told that it should function for six months. Plus of course without the line I would be subject to constant canulation which my poor old veins are no longer ripe for. I reluctantly agreed to have a canula put in today which should last 5-7 days and should therefore see me through the rest of the P53 and DCT. But I came a cropper today when it was time for KLT – the pain!!!!!!!!! All the way from the canula in my hand up to my shoulder. Aaaarrrrgggghhhh!!!! I asked for the doctor to be called in to see if the canula was put in properly or if there was another problem but I guess they thought I was being a weakling – I got no doctor’s visit just notice that “other patients get this pain too” from KLT via a canula and I just needed to bear it. Grrrreeeeaaaaaat.

I had some trouble getting to sleep last night but I got there in the end after applying some Nurofen gel and having Brad rub the sore spot on my back for a while. Even better was that I only woke up once during the night. But the weird thing was the feeling that I had when I did wake in the middle of the night. I felt like I was floating after awaking from not one, but two dreams. The first dream was set in a summer seaside holiday with Anthony and Rachel that was called Rottnest Island but it wasn’t Rottnest. It wasn’t a place that we’ve actually been to either. The other dream that I awoke from simultaneously (or so it seemed) represented something that’s actually happened. It was when Tonya and I drove off the highway between Rome and Florence into a little hillside town and took photos next to a sign that said “Sexy Disco,” that was randomly placed on the side of the road. The backdrop was a series of undulating green hills, made even more green after T photo-shopped the photos! I can’t explain either of these things and I’m pretty sure a dream book wouldn’t help either but they were both really pleasant thoughts to wake up from.

Not much else to report today. No HiFU because the doctor was having a day off, so just drops, KLT and ‘antibiotics,’ (I think the drug is actually an anti-inflammatory rather than an anti-biotic). But when I got out of the hospital bed to get ready to head home I wasn’t feeling great. Even without HiFU or SPDT I am feeling exceptionally swollen and tender in the flank. It’s scary every time that happens because it just makes me think that the treatment isn’t working and that the tumours are getting worse. I managed to waddle home and put myself to bed for a couple of hours to relax and warm up. The feeling has improved slightly as the night has worn on, so at least that’s something.

Day 37: Day off (Sunday 4 December)

I can say one good thing about our hotel room; it has the most amazing block-out blinds that I have ever come across.  I couldn’t believe it when I checked the time after I woke up and it was eleven o’clock. Awesome.

I basically did nothing all day. I found one English-speaking Chinese news channel and watched some news and had an average morning coffee. The couch and I were inseparable for most of the day. Mum was already out and at ‘em when I got up but she came back from her travels with a new pillow for me so that was a bonus (the ones at the hotel are flat as tacks).

I continued to rest in the afternoon and spent some time on Skype. Thanks for the chat Nic, Jess and Zac! Shame about the poor connection.

My latest blood test revealed an elevated white cell count so I thought that was worth getting to the bottom of. Turns out it’s not all bad. The three relevant causes of raised white cell count are a) cancer, ok, nothing new there, b) infection – I have no other symptoms so that’s unlikely, and c) tissue necrosis – fingers crossed that one’s a winner!

I started my short course of gallbladder herbs today (Dan Shi Li Tong Pian). I haven’t seen those gallbladder doctors for days so methinks they’re not coming back after I poo-pooed the idea of surgery at this stage (read: if I have to have surgery I would rather have it in Perth).

I have been waiting weeks for several packages that people have sent to me and one showed up today. Well, not one sent through Aussie Post, but something I bought from StrawberryNet online. At least that confirms that the address I’ve been using is correct and that things can arrive here, but it’s a shame my vegemite, t-shirt, ski vest, book from Karen and a bunch of other stuff still haven’t shown up yet. Hopefully the packs arrive before we go home.

So far we’ve shown Mum one of the delights on Restaurant Street as well as the hotel buffet (which, btw, comprises 50% of the same dishes as the breakfast buffet). Since Mum and Brad are hanging out for some black tea bags we decided to go and eat near Walmart so they could also stock up on their tea without having to make an extra stop in the cold. So, we ventured to the trusty food hall to sample the wares available for dinner and were not disappointed.

Back at the hotel it was time for me to keep my promise to Scooter and finally watch Food Matters. It didn’t disappoint. What we already suspected about super foods, raw food, pharmaceutical companies and cancer treatments was confirmed. It was a good reminder and wake up call. It just made me want to get home even quicker so that I can control my food intake properly and cook for myself. Of course, there were parts of the doco that upset me too. Maybe it’s too late for me. Maybe I can’t get my immune system to ever work again and maybe I will be one of those “cancer survival statistics,” ie you’re classified as a survivor if you live for five years after initial diagnosis, regardless if you die one day later. I’m not dwelling on that – I’m just saying.

I’m not exactly the healthiest eater in the world but I do tend to buy whole foods (sometimes organic), not packaged, and cook most things from scratch. Sure, I can’t help cracking open a packet of Cheezels every now and again, but by and large I eat and serve good, wholesome food. I eat too much of it, but that’s another story. It really upsets me when doctors prescribe drugs as the default position instead of investigating food options to help heal people. Me and so many of my friends have repaired or improved various conditions of our own volition like psoriasis and other rashes, migraines, stomach pains, bloating, bowel dysfunction, depression and other things by removing various foods like dairy, gluten or sugar for a period of time to rebalance the system. It works, it costs no more (since you are not paying for drugs) and it does no harm. Noone ever died or got cancer from not having any sugar or milk in their diet. I just wish that all doctors were as awesome as my GP in Sydney who takes an holistic view about these things and recommends nutritional solutions to help heal people. Dr Jen is the best. I also have it on good authority from my friend Alice that Dr Clive in Perth is pretty good too, but I haven’t been to him yet.

The other day I asked for help to come up with some ideas for me to do something nice for Brad who has really been a trooper these past few weeks. Thank you to Maryann, Felicity, Belinda and Jessica for your excellent suggestions. You girls are the best. Didn’t get any suggestions from the boys though…. Hmph.