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!

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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!