Day 32: Tuesday 29 November

I’m trying a new approach to writing today – doing a little bit here and there as the day transpires since I haven’t been too good at staying awake of an evening to write a proper synopsis of the day’s events. We’ll see how it goes…

 Let me start by saying that I am very far behind in my correspondence and I apologise to everyone who has not received a reply to their well-wishing email or blog message. I’m going to try and catch up and get back to everyone but the hours in the day where I am awake, lucid, pain-free and not in treatment seem to be fewer and farther between. My apologies!

Morning:

So far today I don’t feel too bad. I slept well, albeit in a deep puddle of my own sweat. Niiiiiiccccceeeeeeee.

I have started the infusions including P53 and have decided to stay sitting up in the hospital bed for as long as possible – it is getting very tiresome being horizontal all the time, not to mention the pressure it is putting on my back.

This morning the Choice newsletter has provided me with plenty of entertainment. I have apprised myself about what to buy, and not to buy when it comes to carry-on luggage, baby strollers, saucepans and more. Of course, I don’t need any of this but it doesn’t hurt to stay informed! I also learned that it’s better to sell unwanted gold at a shop on a high street rather than in a booth at a shopping centre, but that’s hardly a surprise, and you generally get better prices for gold on the Internet rather than at a shop anyway. I sold an unwanted gold bracelet on eBay a couple of months back and basically got the spot price for gold relative to it’s weight. I would add to the Choice article – consider selling your old gold directly to the Mint in your capital city.

….

So it has been a really fun couple of hours. I was due to go to HiFU just before three but I started to get right-side rib (gallbladder) pain. It got worse quickly. I had an injection to ease the pain which didn’t seem to do much then awhile later I had another injection which I think was to stop the contractions in the gallbladder. After a lot of pain and some puking the pain subsided but was not eliminated. Now, two hours later, it is getting worse again. I have put off HiFU today because I just can’t be trapped, unable to breathe deeply or move in the HiFU machine with this kind of pain.

During all this I thought I would do something useful and see what I can do to try and avoid the attacks, and to try and avoid having my gallbladder surgically removed. It seems that one cannot have gallstones removed as the procedure is “too risky and complicated,” and it’s much easier (?) for surgeons just to take out the whole organ. At least, that’s what the internet says.

I found several gallbladder cleanse remedies that promote the use of cold pressed olive oil and lemon juice to soften and ultimately expel the gallstones. It looks like an attractive option if I can get the necessary fresh raw food and juice to prepare for the cleanse. First though I think I will try one of the three Chinese medicines designed for the same purpose – I am in China, after all!

The first remedy I found on the net was Gold Coin Grass (Herba Lysimachiae). Apparently it is best taken in alcohol, rather than through tea or in tablet form. The nurse here has suggested Xiao Yan Li Dan Pian and Dan Shi Li Tong Pian, the latter of which is apparently available within the hospital. I have asked to have whichever they will give … transmission interrupted for sudden puking … me.

Given that the pain has persevered, and worsened, I have been given a shot of morphine and some anti-nausea medication. It hasn’t made the pain dissipate completely but I am a hell of a lot better. And not too dopey either, which is nice. And not itchy. Come to think of it, was there even any morphine in that shot???

….

There are always so many surprises in hospital each day. I often think, “What could possibly go wrong today?” assuming that I’ve seen it all already. But, inevitably there are more surprises in store.

So in the last two hours, after the latest onslaught of stomach upheaval, I have been visited by the hospital’s gallbladder specialists. They seemed knowledgeable but they definitely had the air of Western conservatism about them. A few things came up like, “Why didn’t you have your gallbladder removed when you found out you had a gallstone?” What??? I’d expect that from a doctor at home but really, in China?? Well, a) I would prefer not to chop out any vital organs since I am kind of running low on them, and b) I have never had any problems of this sort before, so why would I ‘fix’ something that ain’t broke? I am still convinced that the HiFU has precipitated this gallstone movement.

Anyway, they are going to check my old scans tomorrow and do a specific ultrasound to see what growth and or movement of the gallstone there has been over time. They’re giving me some tablets in case this flares up overnight and have warned me off taking the Chinese remedies. I was pretty disappointed about that but I *hope* they are only keeping me off these herbal remedies for as long as it takes them to get a baseline on where I am at with this.

Since I’ve been here everyone has been telling me to eat more, which has been hard to do because of the availability of food at various times and because of my fevers which have put me off food. Today for the first time I have been told to eat less. That seems almost impossible! I read a list online of foods that people with gallstones are advised not to eat. Combine that with Peter D’Adamos’ blood type diet for cancer patients, foods suitable for my ethnicity, foods that are actually available and the fact that I have no ability to prepare food for myself and I’m not really sure what there is left for me to eat! Perhaps some fruits and veges that don’t require preparation? I’m sending Brad to Walmart to buy a vege peeler tomorrow so that I can at least buy carrots to peel and eat. That’ll be another healthy raw food option. I *think* they sell them at the outdoor market near the hospital!

I left the hospital armed with some extra drugs around seven o’clock or so and we went straight to the dumpling place where the lady speaks some English. We don’t go there because she speaks English, but because she has really good food. It was nice to get out and I felt quite reasonable considering the pain and puking that has been going on all day. She makes an exceptional potato, eggplant and tomato dish that we’d love to learn how to recreate. That, some dumplings and soup and we were happy campers. There is no doubt that my mood today is a thousand percent better than yesterday.

Grateful to the Chinese Government

Despite all my medical antics there were practical things to attend to today. Brad went on an expedition to retrieve our passports and to get the final verdict on our visa extension application. Success! We thought we would have to leave China after our first 30 days here but our visa conditions have been changed and I am exceptionally grateful. Now we can avoid the arduous exercise (not to mention the expense) of having to leave China and go to Hong Kong for 24 hours or so. Thank you China!

Comninos’ (the good, the questionable and the junior) – sorry I couldn’t talk tonight – I couldn’t let dinner go cold. I promise I’ll make it up to you!

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Day 31: Monday 28 November

This entry is the first one that I was not able to start on the day that it actually happened so I am piecing it together a day later…

I was exhausted when I woke up on Monday morning even though I had ten hours’ sleep.

I made it to the hospital a little late, and quite down and grumpy, but nonetheless prepared for the week’s treatment to begin. The day was plagued with delays of every sort. First the nurses couldn’t start my infusions because my picc line was blocked and they just couldn’t clear it. Eventually I was taken for an ultrasound which confirmed the blockage and at which time I was also told that it wasn’t DVT. Not sure how they could tell that but no complaints!

Yesterday afternoon and last night I had a lot of lower back pain. I thought it was muscular but then my mind started to play tricks on me (as did Brad’s on him) and we both independently came up with the horrendous possibility that maybe I have new tumours in my back. Brad suggested that I get an ultrasound on the tender area to double check. The radiologists in the HiFU team did the ultrasound no problems and they said it is all clear. Phew. Now, a day or so later, the area is slightly tender from the massaging that Brad did to try and relieve it but it doesn’t have any of the pain that it did on Sunday thank goodness – so I will just put it down to being another one of ‘those things.’

After lunch I went for HiFU and got very hot over the course of the treatment. The treatment seemed very long, maybe an hour although I didn’t ask. My mind was not enjoying the experience. My body was taking it slightly better, but every so often a hot, sharp pain penetrated my leg for a few seconds until the machine focussed the energy on another part of the pelvic tumour. I have experienced this shooting pain before when they have HiFUd the pelvic tumours – perhaps it is the focal point of the energy crossing paths with nerves or something? Anyway, I got a temperature after the HiFU as well as the usual stiffness and tightening of the abdo-pelvic area so I was quite uncomfortable after the session. I didn’t get back to the room until the early evening and Brad called to see if it was time to come and pick me up yet. Ha! My temperature jumped from 37.3 before the HiFU up to 39 for three or four hours. I had the anti-fever medication but it worked very slowly. I finally had enough and around 10pm I packed up and left the hospital to ride out the rest of the fever at home in the hotel – my 12 hour day was long enough. I was starving by this stage so a makeshift dinner of an orange, crackers and two Raffaelos was the best I could manage. Still, it did the job.

On Saturday a new SPDT patient from Brisbane and her husband will join us here in Xian. It will be good to have a couple of new people to talk to.

I also went nuts today because my mum told me she had bought some apples that she wanted to bring to China. I can’t be bothered reliving my hysteria at this suggestion but suffice to say there are plenty of apples here and mum doesn’t need to use a kilo of her luggage allowance on apples.

Oh, and there was quite a bit more spontaneous crying today. I am getting quite concerned about managing the depression which seems to be coming my way at a rate of knots. I don’t want to go on anti-depressants right now so I think I will start high-dose Omega-3 for a while and see how I go.

Day 30: Red roses and a barking black dog (Sunday 27 November)

I barely slept again last night but this time it wasn’t because of pain – it was because of the lack of it. I know – it makes no sense. My mind didn’t stop ticking over all night and I just couldn’t believe the fact that I could sleep on my front, back or either side without pain. The joy of it kept me awake – very annoying indeed.

A long sleep-in balanced out the lack of night time sleep and then it was time for an adventure. Although I would have been more than happy not leaving the hotel room, I thought it was the least I could do to accompany Brad on a weekly outing. We planned to visit “Easy Home” which is a furniture place that we’d driven past in cabs, find a church for Brad then check out Green Molly, an Irish-pub-come-Italian-restaurant that we found on Trip Advisor.

Brad assured me that Easy Home was just up the road so we grabbed a cab and headed there. We thought we might be able to find a big comfy chair for me to put in the hospital room so that I wouldn’t have to lay in the hospital bed all day.  But alas, our plans were foiled once again. The shop wasn’t quite where Brad thought it would be, or in fact anywhere within sight. We abandoned the Easy Home plan while we were en route and decided to go straight downtown to find the church.  Brad had a map with some directions in Chinese characters for that one – but the cabbie had other ideas. Not long after we had gotten in the cab he put a sign in his window which we can only assume read ‘not in service.’ That became quite a handy tool for him later on when we tried to re-route from Easy Home to the church because he simply pointed to the sign and kicked us out of the cab. To his credit, he didn’t accept payment for the failed journey. By that time we didn’t know where we were, it was cold and there were no other cabs in sight. Eventually a cab came and the young driver seemed to indicate that he could get us to the general vicinity of the church, but not the exact location. Ok, we’ll take it!…. As we got closer to where the church was supposed to be he started calling out to other cabbies and they all gestured in the same direction so that was reassuring. Brad and the driver were so intent on finding the church that they actually missed it as we drove by. It was yours truly aka back seat driver who pointed to the huge crosses that marked the sky and suggested that we might have just passed said Catholic church. Hehehehe – a small victory, but you take ‘em where you can get ‘em.

As luck would have it there was a service in English twenty minutes after we arrived so I got Brad to deposit me at the nearest, warmest establishment that served meat and he went off to church. I think I will do more justice to the “meal” I had at the “steakhouse” by not saying anything further about it. MFS is right (as usual) – always follow the golden rule and do not eat steak in Asia. After all, we don’t want to put the Argentinians out of business!

When Brad left me to go to church my mood was already spiralling downward. The cold temperature didn’t help and I became more and more mopey as the day progressed. When Brad came to find me after church he came bearing red roses to cheer me up. It was a lovely gesture and did cheer me up – for a moment. There are times when nothing can be said or done to relieve a funk like the one I was embarking on.

We decided to have a look at the department store next door to the steakhouse and what an eye opener that was. The prices! I can’t begin to tell you. The Sealy beds were $5K-10K, pillows were $100, lounge suites $30K and so on. Suffice to say we didn’t see much action at the cash registers. We found a little Australiana section in the shop which made for some light entertainment. Have you ever been overseas and wanted to pick up a few Aussie icons to give away as gifts, like koalas or kangaroos, only to find that everything for sale in Australia is made in China? It’s happened to me. So we couldn’t believe it when we saw mini koalas for sale that were actually made in Australia, even though they were $12 each. A little bit ironic, don’t ya think? And have you ever wondered what happens to all those sheep’s placenta’s that come out every time a yummy spring lamb is born? Well, I can tell you! Some enterprising Aussie turns it into “Sheep’s Placenta Cream Moisturiser” and ships it off to China. Love that entrepreneurial spirit.

Right now a new pain has developed in my lower back and I am thoroughly buggered after our day out. I definitely overdid it today and was out for far too long. I started to get some abdominal pain around six-ish then the lower back pain crept in later. I have cried spontaneously several times today and all I can think of is that I don’t want to be here. The only problem is that I have nowhere else to go. If I go home to Perth, then I’m on a one-way road to nowhere. I can’t think clearly now so I am going to go to bed and will finish this entry later.

Black dog barking

He’s barking. He is still in the neighbour’s yard but I can hear him. His bark is getting louder. There’s a breach in the fence and I know he is going to find the hole soon and squeeze his way through into my backyard. I don’t have any repellent to beat him off with so it’s going to be a standoff – me vs him. May the best woman win.

Brad has said to me to make sure I tell the truth, the whole truth and nothing but the truth in this blog. He says I “owe it to my readers.” I thought that was kind of cute. I don’t see myself as having “readers,” but merely an open outlet for me to vent my fears and frustrations. I don’t mean to gloss over anything that’s happening here, or deliberately sanitise or “spin” the experience. I guess there’s so much of the treatment process and the illness itself that really, really sucks that a part of me doesn’t want to think about it and that it’s probably easier for me to focus on “easier” but equally frustrating topics that get me down like laundry, food, smoking and other day to day dalliances. I should say that Brad doesn’t actually read the blog so his information is based on occasional comments from friends about “something funny” that I may have said. Of course they’re (you’re) going to comment on the funny stuff, not the morose bits! Anyway, I’ll try and keep keeping it real (without being too offensive or disparaging about anything or anyone, since I am completely grateful for being able to be here and receive some treatment even though it is bloody hard going).

Day 29: Happy Thanksgiving (Saturday 26 November, but it’s the 25th in the USA)

I figure I am off the hook for not sending Thanksgiving wishes to all my American friends yesterday because of the time difference.  I hope y’all will forgive me for that! Just know that somewhere along the continuum of the international date line I send my very best Thanksgiving wishes to all the KSG crew and all my other American friends, as well as the Aussies and others who have found permanent and temporary homes in the grand ol’ US of A. I hope there has been much merriment and delight in your day.

More celebrations have been happening today but this time a little closer to home. Amanda and Damien tied the knot in Kings Park today and from what we hear, it was a tremendous celebration. Congratulations to you both and may you enjoy many more good times on the stretch of Beaufort St from Newcastle up to Cantina (with the occasional segue into Inglewood). Next drinks at the Scotto are on… Brad!

As for me, not too much of note happened in Xian today (at least, not in my part of it). Hospital – antibiotics – P53 – pre-emptive fever relief – long sleep through the morning then back to the hotel around 230pm and straight to the couch to continue the zzzzzzzs. Dull.

The only way to describe my demeanour today was blah. Brad was in a pretty good mood and was even happy about doing the laundry but I could barely muster the energy to hold a conversation so I just went to sleep instead. I wished I could’ve had a little more enthusiasm for the day, especially since we were given a “free” half day off. But I couldn’t. Instead I put on Dad’s old brown jumper from the 1970s (Sportscraft, still in mint condition), swathed myself in a coloured silk sarong that my friends Rachel and Gemma brought back from Fiji for me ten years or so ago, and put on my favourite pair of warm socks that read “I am breast aware,” that came as a free gift with purchase when I bought my purple Steel Blue steel-capped work boots as part of a Breast Cancer Care WA project. It was an eclectic look, to say the least. Thank god no one knows me around here because I didn’t bother to get changed when we went out for dinner although I did leave the sarong at home. If I ever had fashion standards, they have officially been abandoned.

We decided to “save up” going to one of the fancier restaurants further afield for tomorrow night in the hope that I would have a bit more energy so tonight we tried out a Japanese place that we’ve noticed in the mall near Walmart. The thought of eating another cuisine besides Chinese was very exciting. I wouldn’t say that this particular place served the very best food that Japan might have to offer, but it was certainly a nice change. Brad left me in charge of the ordering and I was so taken with the diversity on the menu and the fact that the menu was bilingual that I over-ordered fairly dramatically. We sampled the spicy fried rice (suspiciously similar to Chinese fried rice), some prawn dumplings (gyoza), beef and tomato noodle soup, pork chop and rice, Thai-style spring rolls (???!!!), tempura prawn California rolls, miso and pickled cucumber. There was plenty left over when we left but the flavours were good and the experience was one that we will repeat. The curious question of the lack of chicken came to the fore again tonight. I have never been to Japanese anywhere in the world that didn’t have chicken on its menu, whether in rolls, teppanyaki, teriyaki or in any other dish. The case of the missing chicken bodies in Xian gets more and more curious. There are plenty of eggs around though…

My shoulder started to arc up this afternoon while I was resting and I tried to ignore it and hope that it would go away of its own accord. I struggled through dinner and through the trip to Walmart (what a Saturday night out!) but enough was enough. I took 20mg of Oxycontin when I got back to the hotel room (just one tablet). I didn’t get relief straight away but the pain subsided for the most part so I was confident of a good night’s sleep. Plus, my fresh supply of Panadol was at the ready to take the edge off when necessary without too many of the nasty side effects of the opiates.

I think I need to spend a bit more on the Thanksgiving theme tonight. Despite how down I get or the pain that I feel during and after treatment, I know it could be a lot worse. For a start, it was a lot worse for me earlier in 2011 when I kept getting infections, springing leaks and a bunch of other crazy stuff after the partial nephrectomy. But right now it is far worse for a lot of people who I know, or who are separated from me by just one degree, so I am thankful that I am still in one piece, I am receiving non-invasive treatment and that there is still hope for me.

John from Canberra has shared with me some stories about other “club” members and what they’re thankful for. He told me about another cancer patient who is in ICU in the USA right now on high-dosage Interleukin-2 which takes you as close to death as you can get. If she survives the treatment, there’s a 15% chance that she may not need any further treatment for five years. She is thankful to be halfway through her second week of four such stints in ICU and for the unexpected care being shown by those around her. Another of John’s friends in our “club” is just out of brain surgery after having a 1.5cm melanoma removed and he is thankful that he can still see and speak. Somehow he is still managing to have a sense of humour even though he has an inoperable melanoma in his neck around his carotid artery.

I communicated with a woman this week who has recently been diagnosed with breast cancer. Her response when I extended my sympathies is worthy of reproduction:

Don’t be sorry, as I do not feel that way myself. I’ve had a pretty clear run for 50 years, never went hungry for one day, never lived under war for one moment, slept in a bed with a roof over my head EVERY night. There are many, many people who aren’t that fortunate.

She’s right. That’s plenty to be thankful for.

Marylin

I would like to say a special thank you to our long-time family friend Marylin who took the time to make contact and send a note to me recently even though she is facing her own wretched cancer battle. I know her energy is scarce right now and it means a great deal that she shared her limited reserves by sending a note of encouragement to me. Although I haven’t seen Marylin for many years I have always remembered her perfect red lipstick, striking blonde hair and immaculate grooming. I had hoped to emulate that same level of presentation for myself as I grew old enough to buy my own clothes and makeup but I never quite reached the standard that Marylin set! I remember having great fun during the times that Marylin babysat for my brothers and me – the lolly jar seemed limitless and I definitely don’t remember any hardline rules for bedtime. Marylin, thank you for being a figure to admire in my youth and for your kind words of support. I will see you back in Perth before Christmas and Ellie can cook for us both!

Day 28: Happy 85th Birthday Nanna Zora (Friday 25 November)

Today Nanna Zora turns 85. Bloody hell. I’ve had enough trouble making it to 35 – I don’t know how you’ve done it Nan. I guess they used to make ‘em a lot tougher than they do now! I hope you have the best possible birthday that you can, given all of the challenges that you face on a daily basis. I wish I could be there with you but in any event I’m glad that you will receive many visits today from family and friends – you deserve it. Lots of love on your special day, Jaye and Brad.

I finally had a night without pain. Well, I had a tiny bit, but nothing to write home (read: blog) about and nothing that caused me to take any drugs. I slept through the night too. Well, actually I woke up twice but that’s practically sleeping through the night. I had to get up to get changed because I sweated through my clothes a couple of times. So let’s just go with this summary – a pain free, sleep filled night. It was great.

It was intended that I would have the antibiotic infusion in my room today then head straight down to SPDT. Unfortunately I was back asleep again by 10am and there was no person or thing that could wake me to get me down to therapy. When I finally emerged from my slumber at 130pm all the infusions including the vitamins and KLT were done, so I only had SPDT and HiFU left for the day. Things were looking up!

SPDT went by without incident and HiFU wasn’t bad either. Today they zapped a pelvic tumour located away from my gallbladder so that was good. I did come off the HiFU bed wet with sweat from the base of my hairline down to my legs, but that is just par for the course.

I had only managed to fit in a banana for lunch after waking up and before SPDT so I was eager for an early dinner. In the past day or two it has been revealed that the cafeteria in the hospital actually has an evening opening time as well as breakfast and lunch. We think it is from 4pm-6pm but that’s still to be confirmed. Anyway, rather than bracing the cold to get food out ‘on the block,’ I decided to go for the in-house option. It is really very good quality for cafeteria food and is super cheap (just don’t mention the noodle soup).

So tonight I am well rested, sober and fed. Experiencing these three things in combination are a miracle in themselves. This state of relative well-being means I can read over the less than lucid drafts of the past few days’ worth of blogs and hope that the internet works for long enough for me to upload them. This will mean that Chris M will have a happy day tomorrow. You see, he was driven to call us tonight to request more punctual receipt of his morning reading material (and possibly also to check in to see how we are travelling). Apparently he needs my regular daily blog to help keep him regular, or something like that J. I’m pressing “upload” just for you Chris.

Day 27: Dopey (Thursday 24 November)

Apparently it’s Thursday, and has been all day. That’s news to me.

Last night was a nightmare. I had drugs around 10pm before I went to bed to try and relieve my back pain. That seemed to work but then it started up again and woke me at 3am. Then 5am. Then 7am and finally 8am. I took either Oxycodone or Oxycontin on each of these occasions because I was so desperate for the pain to go away. The trouble was that I took the lower dose drugs first, then ended up taking the higher concentration ones at seven and eight in the morning. Dumb.

By the time breakfast rolled around at 9am I was like the living dead. Brad said that sitting across the table from me at breakfast this morning was one of the worst things he’s ever done. He said my eyes were rolling back in my head, I was scratching all over and my arms were behaving as though they were disconnected from the rest of my body. I don’t know how anyone can take these sort of drugs for fun. It was awful.

I hadn’t actually overdosed on the painkillers but I had certainly taken too much. I didn’t sober up until yesterday evening and spent the whole day just fading in and out of consciousness. Most of the day is a blur to me and Brad has had to help me piece the order of events together.

I had my infusions in the morning including a new infusion to help calm my gallbladder. Then I went to SPDT but wasn’t sure if I would make it through. I puked after the PDT and was thinking about having some morphine before going in to the SDT bath. Ultimately I was lucid enough to decide that I didn’t want to be even more out of it in the bath just in case something happened. I figure that being drugged in an SDT bath in China was neither a salubrious method nor location in which to drown. It was a good decision to refuse the morphine because I managed to cope with the low level pain for the rest of the day and night without the aid of any painkillers.

In the afternoon we got word that a man with an esky was due to arrive on a plane from Beijing with my Dendritic Cell Therapy so we would get started straight away. Naturally, I got a fever just as I was about to start DCT but that didn’t delay things. I was given the dexamethasone combo to calm the fever and DCT was carried out for the first time, without any immediately obvious effects.

Mum, Glenn and Linda were having dinner with Nanna tonight in advance of her birthday tomorrow and called me to check in. Partially because I was out of it on drugs, and partially because I was so sad that I wasn’t there with them, I cried through most of the call. Of course, that then made them cry. Sorry, I didn’t mean for that to happen. Nanna tried to cheer me up by telling me stories of people at her nursing home who’d had all manner of illnesses over the years and who are still going strong today at over ninety years old. Even Nan has had breast cancer, a heart attack, a bunch of strokes and two hip replacements and is still kicking. As they say, there’s always hope.

New artwork for my hospital room by Fletcher and Sean Flynn

New artwork for my hospital room by Fletcher and Sean Flynn

Day 26: A moving feast (Wednesday 23 November)

Despite all my rage I am still just a rat in a cage. That theme seems to be coming up a lot lately.

I am so tired these days I can barely put my finger to the keyboard each night. But I have to. If I don’t there won’t be any record of this experience for me, or for anybody else. God knows I will block it out.

I was like a crazed jack in the box last night and was up half the night trying to occupy myself. It seemed that there were a lot of Perth people also up and about at 4am – we made quite a club of it courtesy of the internet. I read the sample chapter of the Ben Cousins autobiography on iBooks, tried to get through a backlog of emails (without tremendous success) and looked at old photos including those of my visit to Beijing in 2007 (thank you Megan, Brendan and www.XMediaLab.com). That sure was a different trip to China. No hanging out in the Great Hall of the People or walking the Great Wall of China this time.

After SPDT I got to go on an outing. This was quite the rare occasion for me since I’m usually trapped like a rat in a cage on treatment days (I just mistyped cage as Café – I wish)! We had to go and get some more passport photos done to hand in to the authorities as part of our visa extension application. Allison found somewhere not too far away and that meant we got to stay out for lunch too. It was still quite early and we weren’t really hungry but I sure as hell wasn’t going to miss an opportunity to try somewhere new and different to eat. We ended up at a little Szechuan place and had a cabbage dish, beef and veg, and a spicy chicken. It was all delightfully tasty although it was enough for six people rather than three. Brad and I could not help but imagine the chicken dish served with breast, thigh or leg meat. It consisted of all the bony parts of the chicken like the feet and the neck. As I said, it tasted good but it was so hard to get any meat off the bones. That then got us to thinking – where do the rest of the chickens go? At restaurants, the supermarket and other places we can always identify a ready supply of chickens’ feet and the other non-meaty parts of the chook but we haven’t seen a breast or a thigh this whole time. The investigation will continue.

A new treatment plan

My treatment programme appears to continue to be a moving feast and tomorrow I will embark on a slightly altered regime.

After a great deal of discussion and much confusion on my part I think that I have deduced the treatment as follows:

  1. Dendritic Cell Therapy. Starts tomorrow for four sessions. The blood that was taken to Beijing and treated has been returned in ten packets and I think I will receive two or three packets at a time over the next two weeks.
  2. P53 Gene Therapy. The bane of my existence (well, one of them). A course of P53 is ten sessions and now I have had seven so only three to go! They will be administered on the next Saturday, Tuesday then Saturday. I *hope* that’s the last I have to see of P53. But at least this time I won’t be ‘toughing it out’ and will accept without question whatever anti-fever medication that gets sent my way.
  3. HiFU continues but not tomorrow. I pursued a line of argument with the doctors today that I should have a break from HiFU tomorrow while I am adjusting to the DCT. Either they agreed, or they couldn’t be bothered arguing with me. I suspect it was the latter.
  4. I am being given a three day course of IV antibiotics to help calm the inflamed gallbladder. I tried to get oral antibiotics but tablets don’t seem to be freely available here and infusions are far more common. This will add an extra hour a day but at least it is for a finite period. Interestingly they gave me an allergy test before agreeing to give me the antibiotics. I thought this was a bit OTT, given that the process in Australia is for the admissions clerk to ask “so, do you have any allergies that you know of?” and that’s about it. Turns out it is government regulation here to conduct an allergy test before administering antibiotics so I was quite impressed. I am almost too scared to look up the number of deaths that occur in Australia because people are allergic to things administered in hospitals that they have no idea about.
  5. SPDT continues, plus vitamins and KLT.
  6. Is that all? Honestly, I am so tired I can’t remember right now.

This week’s ‘Mum’s not having chemo’ newsletter

I subscribe to Gemma and Laura Bond’s newsletter via www.mumsnothavingchemo.com. Perth being Perth, Gemma is a friend of a friend although we haven’t met. Laura provides excellent research and food for thought in the weekly newsletter. This week’s information was excellent as always, but it made me cry. I won’t do the article justice by attempting to paraphrase it but if you’re interested in learning more about the money and politics involved in cancer treatments in “developed” countries like Australia and England then have a look at their site and sign up to their newsletter. It’s probably time we all opened our eyes a bit more on this one.

Ladies, please keep it down!

HiFU was for an hour today and after a lot of effort to find the right tumour and get me into position I was finally free to drift off with the fairies. Well, almost. The only catch to that was the chatter in the room. You see, my new Chinese friends love to talk. And talk. And talk. They particularly like to talk all at the same time. I don’t know if it is worse than when my crazy Croatian-descended family gathers around and everyone talks over each other but I’ll say that it is only because I am meant to be peacefully receiving treatment rather than hanging out at a relly bash. I tried really hard to explain that it would place me in a far better frame of mind to receive treatment if the chatter and its volume could be kept to a minimum. The girls thought this was hilarious. I did not. Julia came up with a tremendous suggestion, “so, maybe if we want to talk during treatment we should step outside the room?” YES PLEASE!

Smoking kills, even in hospital

Smoking kills. And it stinks. And the hospital is filled with signs that say “no smoking.” But they are ignored. It is really challenging to step outside one’s hospital room only to find another patient smoking in the hallway (guess he didn’t want the smoke in his own room). Sometimes people gather to smoke on our floor around a small window near the lifts. Great, except that the wind is usually blowing inwards. All I can do is step through it (literally and figuratively) and just be glad that there is no smoke infiltrating our hotel room.

More first world problems

I am reticent to continue to bitch and moan about the *first world problems* that affect us on a daily basis but I did promise a warts and all approach. I’ll try to stick to a brief example.  Two nights ago Brad accidentally spilled a cup of Milo over the floor. He tried to clean it up as best as he could but we don’t have any cleaning supplies or rags so it was a temporary fix. The next day we assumed that the cleaners would take care of it. That didn’t happen. Nor did it happen today. Nor has the room seen a vacuum in the ten days or so that we’ve been here. We have attempted to communicate these problems to the staff verbally without success. So I wrote a short note to hotel management to explain that we are long term tenants and to make a few basic requests like having the sheets changed once per week, vacuuming once per week and so on. We got a note back to thank us for our suggestions and to apologise for any inconvenience. It was accompanied by a fruit basket. The floor however, was not cleaned.

Nearing the end of our tethers but trying to be reasonable given our lack of Mandarin speaking abilities Brad decided a Pictionary approach might work best. He has now printed out various images from the internet showing a bucket and mop and vacuum cleaner. Just as I’ve typed this paragraph the cleaner who was meant to be taking care of the Milo spill has left the room. Brad reports that there was no mop or bucket in sight, but that the cleaner was on her hands and knees with a cloth which appears to have spread the muck around rather than having cleaned it off. You see, at no time during the cleaning process was the floor ever wet. Brad is off to buy a mop tomorrow to take matters into his own hands. Mum – you sure have some fun jobs to look forward to when you come for your visit!!!

On the matter of all things clean, VC from Shanghai has provided a very helpful suggestion so that I don’t get stuck wearing Brad’s undies again. She came up with the brilliant idea of stocking up on some disposable undies “just in case.” Last night I stopped in to Watsons (similar to Priceline) and noticed that disposable knickers came in five packs at a very reasonable price. Worth a laugh, if nothing else! So they are now readily on hand in case we get ‘behind’ in keeping the smalls clean. (That was meant to be a pun, but I don’t think it really came off).

Thank you to Kylie for the very helpful care package that arrived today. I appreciate it.