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.

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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.

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.”