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.

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Day 36: Hundred thousand dollar woman (Saturday 3 December)

I was pretty miserable again today. Went to the hospital for 10am and finally started the infusions at eleven. Bottle after bottle was raised and removed from the stand and finally at 5pm I was free. I slept most of the morning to try and compensate for last night. It was a funny night. No pain, but more post-HiFU discomfort. It was a night of ‘rightside, leftside, frontside, back.’ And repeat. There was no position that would bring me any comfort. I kept away from the drugs until 5am and finally took two Nurofen Plus which helped me sleep through til 830am. That was a good three hours.

Mum and Brad paced out the six hours in hospital remarkably well today. It is one thing being a patient but I’m not sure if I am cut out for a carer’s role – I’m not that patient! Kudos to them.

A new patient from Australia and her husband arrived today. They’re just here for 15 days to give SPDT a go and see if it complements the treatment that she is already having. It was nice to hear another Aussie accent (her husband’s), even though I usually cringe when I hear them overseas because we tend to sound so much more ocka (sp?) when we’re out of Australia. I’m a bit jealous though – the new patient is Chinese by birth so she’s going to have a much easier time with language without any translation barriers here. She told me that it’s just role reversal – she has a lot of trouble understanding what’s happening with her medical situation when information is delivered to her by Australian doctors. Swings and roundabouts, as they say.

My inner foodie

When I came back to the room I decided to read the latest MasterChef magazine that mum brought with her. I’m sort of glad I did read it, but I also wish I hadn’t. The amazing array of fresh produce, taste sensations and flavour combinations, cuisines and cooking styles completely overwhelmed me. It really made me want to go home and get my hands on some of that good stuff. I want to be back in my own kitchen. I want to shop for delicious, fresh ingredients from all over the world and be completely unhindered by what gets served at my dinner table. But that is not to be, for now. For all the complaints I have about Perth as a city, and there are many, I actually think the diversity of food available in Perth restaurants and from local providores is amongst the best in the world. There’s almost no ingredient we can’t get, from anywhere in the world, and it is usually fresh and delicious. That’s nothing to be sneezed at.

In the depths of my misery on this Saturday night while reading the foodie mag, a little light shone into my life. My delightful foodie friends and ex-neighbours Scott-Bradley and Stu from Sydney gave me a call to cheer me up a little. Of course, I cried at first after hearing from them but they soon turned my frown upside down. Thanks for the pick-me-up boys. Scooter is a complete devotee of the Food Matters philosophy and the power of raw food for healing so I am finally going to watch the doco tomorrow night. That’s a promise.

Hundred thousand dollar woman

Today marks the end of week five of treatment here in Xian, China. It is hard to believe. It feels like five months or five years to me, rather than just a few weeks. It also marks the first $100K that we’ve invested in keeping me alive – that went fast. It is a very strange feeling to have a price-tag put on your life. This is just the beginning. Even if the treatment is working, we don’t know how long it will take to have full effect. In the not too distant future there won’t be any more investments to liquidate or loans to be taken. This is quite a confronting thought, to say the least. But for now I just hope that I get some good news soon. I await a glimmer of hope to help motivate me to stay in this race.

James&Lindy&Camilla

Today I got a blog update from my university friend James who is also in the Club. He and his lovely wife and daughter are going through a bloody tough time of their own right now. In her update today Lindy says “We are all still here for now hanging on as hard as we can.” Keep hanging on James. Keep hanging on Linda. Keep hanging on. You’ve got to. I am thinking of you daily from the Northern Hemisphere and hope above hope that we both find our miracle cures.

Day 35: Exhausted (Friday 2 December)

After SPDT this morning I was completely spent, and I mean, completely. I was supposed to go straight from SPDT to HiFU but I couldn’t manage it. I went back to my room, got hooked up to my infusions and slept. And slept, and slept. I can’t believe how completely exhausted I was even though I slept through last night (though I did sweat through my nightclothes again).

During the afternoon they tried to coax me to go to HiFU a couple of times but I could not muster the energy to open my eyes let alone be pelted and drained by the HiFU machine. I just couldn’t do it. So, sometime close to 5pm I exited stage left and went back to the hotel and retreated to the couch.

We went out for dinner and tried our luck at a place we hadn’t been to before, in a street we hadn’t eaten in before. Risky business! We have developed our own system of naming the streets in the local area and tonight we went to ‘restaurant’ street. Other monikers we’ve allocated to local streets include Coca-Cola street, dry-cleaning street and school street – all for reasons which are self-evident.

Our foray into restaurant street was very productive. We (I) over-ordered but in my defence I was ordering for three instead of two. We got an ample selection of veges and rice as well as some duck and spicy chicken. Nom nom nom. The leftovers were enough to feed another two or three people but we decided against asking for a doggy bag 🙂 The total damage was AUD$20 so no complaints with the price tag either.

I just can’t believe how tired I am and how my energy levels are not bouncing back after each day of treatment. SPDT didn’t seem to take it out of me in the beginning like it does now – I don’t know what that’s about. I feel like I am on a sort of treatment overload and really need a break. If there’s a bunch of dead tumours inside me then my body will need to absorb and or expel the dead tissue and presumably that requires energy. I feel like I need ‘breathing space’ from treatment to do that. On the other hand, if this is my one shot in the locker then maybe I should just be ploughing ahead no matter what. No one seems to be able to tell me what the impact of having a break from treatment might be, whether for a week off or a month. I just hope that I get some clarity next week after I have my first set of progress scans.

Danielle sent me a link that gave me a good laugh today – I definitely think there’s something in this research! You be the judge: “Limited swearing helps pain relief.”

Day 34: Liver tumour? (Thursday 1 December)

Another ho-hum day.

Mum arrived last night and she’s already taken the first load of washing to do – woo hoo! Not to mention bringing a suitcase full of stuff that I asked for (as well as just a few things that I didn’t). So now at least Brad has some Mad Men DVDs to keep him occupied (I’m busy waiting for Series 5 to come out), we have a good supply of Cheezels, salt and vinegar chips and Tim Tams (obviously only to be eaten in moderation since none of that is exactly food that’s good for combatting cancer!) and there’s prunes, almonds, fruitcake, supplies from the chemist and so on – all things to help us feel just a little bit more human.

A few other treats came in mum’s suitcase. I received a really lovely hand-made scarf from our long-time family friend Vera. It has just the touch of colour that I need to help brighten me up – thank you thank you thank you. We also got the most excellent invitation to my brother Glenn and his fiancée Linda’s wedding. The two will be wed in Las Vegas next year and the invitation has come out as a poker chip – I love it!!! Nice work indeed.

Liver metastasis?

This morning I had an ultrasound first up to check on the status of my gallstone. It is the same size as it has been for ages (at least a year or more) so nothing too interesting there. I didn’t find out anything else from the scan – maybe the doctors did, but they didn’t share anything with me. The radiologist doing the scan murmured something about a tumour in my liver – now there’s an interesting question. After various ultrasounds, plus the CT and PET that were done in Perth, no one to date has been able to tell me whether I actually have a tumour in my liver or not. The best information I have received is that there is a kidney tumour adjacent to and possibly abutting the liver, although it may actually be a tumour in the liver but they can’t tell. Very frustrating indeed. I would like to know whether I have another organ going down the gurgler or not. I impressed upon Allison and the doctors to pin down the radiologist as to what he actually saw on the screen but there were no definitive answers forthcoming.

I was sore all day – tight and uncomfortable – an obvious hangover from the HiFU from yesterday. I had SPDT then really spiralled downwards. I got a fever after SPDT and sweated through the infusions of DCT, KLT and the others. I did manage to sleep through a lot of the afternoon which was something, at least. Although we didn’t get back to the hotel til seven I was relatively well rested. We had a basic meal in the hotel of braised beef, rice and green veges because it was just too cold to venture out.

Day 33: Sleep deprived (Wednesday 30 November)

Yes, I am behind again. My energy levels are waning on a daily basis and every day there’s a new challenge to overcome. Everything here seems to be getting harder and I have no way of knowing if any of the treatments are helping at all. I can still feel the tumours in my abdomen from the outside, but again, no way of knowing if they are enlarged and inflamed as part of the treatment process or if they’re getting bigger or what’s going on.

Last night was a bitch. With a capital B. I did not sleep a single wink all night. I took different drugs every two hours because I didn’t know what else to do to give me some relief. Oddly though, it wasn’t too hard to get through today. It was actually quite a peaceful day. I even had what I called the ‘perfect’ SPDT session. That is, no sweating on the PDT bed, no vomiting, no burning from the sensors in the SDT bath, no chill etc. Amazing. The afternoon was spent hooked up on infusions in the room and as much as I tried to sleep I just couldn’t. You’d think I would’ve been out like a light!

I went to HiFU in the afternoon and the doctors limited the lasers to half an hour today – an hour just zonks me out too much. They seemed to take the view that I should have shorter HiFU sessions but more often. We’ll see if that pans out.

Allison kindly sourced me some lunch from the basement cafeteria to bring up to the room so I could stay hooked up. She asked what I wanted and I said anything that is in keeping with the gallstone diet. Ha! That was tricky. We have a bit of a running gag going on here and when the doctors tell me to ‘eat light’ I laugh. I have not come across any meal here, vegetarian or otherwise, that isn’t laden with fat and oil. When Allison returned from the restaurant she reluctantly admitted that I was right, and that it was more difficult than she realised to find ‘healthy’ food in the hospital restaurant (let’s not even touch on the hospital supermarket.) So, I got buckwheat noodles in some broth (still with plenty of oil in it) and some mixed veges with sprouted soya beans. Quite tasty.

We got back to the hotel about 530pm and it was still daylight which was very odd. I am not used to being in the hotel in daylight hours other than when I’m leaving in the mornings. There we rested and relaxed. I zoned in and out.

Grapefruit correction

In past posts I have mentioned the giant, super-sweet grapefruits that I have discovered here. As it turns out, they are not grapefruit at all. I bought one from the hospital supermarket on the way home tonight and the packaging (everything is packaged here) declared that the fruit is actually a honey pomelo. Makes sense. I attempted to crack the pomelo to have an afternoon snack but I couldn’t do it unaided. The skin and pith are so thick that I needed a knife and some brute strength to lever the skin away. It was so big that we barely ate a third of it between us – these things can feed whole families! I highly recommend getting your hands on one.

Discomfort

Since having HiFU today I have been feeling extremely tender around the right flank area. Not pain as such, but real discomfort. I am going to take a warm bath (perhaps within an hour given how long the water takes to heat up in the hotel) to try and soothe it then go to bed and try and finally get some sleep. Brad has ever so kindly got the taps running to get some warm water for me and get the bath ready. Lucky girl.

Mum arrives

Mum arrives late tonight so Brad the Superstar is going to brave the cold and go and meet her at the airport and bring her and her assortment of food products and laundry items back to the hotel.  I am SOOOOOO glad that I don’t have to go! Too cold. Too far. Too hard.

I really need to do something nice to thank Brad for his part in this ordeal that he’s patiently putting up with. But what? I can’t go out and buy him anything, I don’t have the wherewithal to take him anywhere, I can’t make him anything or cook him anything… I am trying to get better but that seems to be taking a while to deliver on… so any and all ideas are very welcome!

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!

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.