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 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 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.

Day 25: Four seasons in one day (Tuesday 22 November)

Melbournians know only too well what it is like to experience four seasons in one day. But they generally get to experience the seasons through the weather. Today there were four seasons in my head. I was flat as a tack this morning. I got to the hospital and fell asleep almost as I got in to the bed. They started me on some drip or other and I didn’t even bother finding out what it was. After an hour or two they got started on the blood transfusion, which would turn into a six hour process. At some point Julia started delivering the sublingual chlorophyll drops but I was out of it while she was doing it. She had to call my name every few minutes to wake up just enough to get me to open my mouth and take the drops. Her job wasn’t easy today.

I had a break from drops so that I could have some lunch and Brad came back to the hospital to sort out some food. I could barely speak to him I was so down. I perked up a little after eating the food that Brad spent 40 minutes getting from the cafeteria, but that didn’t last long. Soon after the food I started to spiral down again and started to cry.

Bad thoughts entered my mind. The usual stuff. Has my time come? Am I really just meant to die of cancer? If the tests show that this treatment isn’t working what do I do next? Go back to Perth and die? To Chemo or not to chemo? Mexico? Cuba? Germany? It made me upset thinking about it so the best thing to do was to put myself back to sleep. Fortunately, I do have an inordinate ability to sleep more than anyone I know, so that wasn’t too much of a challenge for me.

I juggled the sleep-drops combo in the afternoon until Julia made me wake up to go for HiFU. I was a bit too lacklustre to walk there today so I asked to be taken in a wheelchair – the slight advantages of being hospital bound. They toned it down a bit at HiFU today so that wasn’t as taxing as it could have been.

Dad said I managed to make him a little happier when I spoke to him on the phone tonight even though I definitely sounded like crap – I am not sure how I did that! I hate the fact that I am causing so many people to worry about me and I wish it could be different. That said, I do appreciate all the care and concern.

When Stevie P called this morning he got the half-awake me. I made him do most of the talking and just chimed in when I had elucidating advice to dole out (Stevie needs it every now and again). I have set him on a mission to make homemade limoncello that he can bring when he visits Australia (he has been threatening this for a while). Now he’s decided he’s willing to get on a plane with 48 hours’ notice. Oh, it’s going to be fun when I play that card!!!

Bloody El made me cry like a baby tonight – but she didn’t mean to. She sent me a link to the song “You Gotta Be” by Des’ree because she heard it on the bus this morning and thought of me. It’s all about being strong and staying on track. It was an exceptionally nice thought and I bear all the responsibility for the tears!

Someone who didn’t make me cry today, but who made me laugh out loud, was Rob S. When Rob’s email came through tonight and I started laughing Brad wanted to know who the message was from. How do I explain Rob? A former student-politics adversary turned friend and professional collaborator. Here’s why I lol’d:

You are braver than a guild hack doing a dirt run at UWA during daylight hours.

It may not make much sense to many people who read my ramblings but to those of you who were involved in UWA student politics in the mid to late 90s it will make perfect sense. I don’t propose to get bogged down in there detail here. Let’s just say that it’s a good thing I only started earning money after the Statute of Limitations for defamation had expired!!! Thanks for the note Rob, I appreciate it.