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.


2 Responses to Day 26: A moving feast (Wednesday 23 November)

  1. Amanda B says:

    Jaye, your good humour and strength during what would have to be the toughest days of your life never ceases to amaze me. You are the bravest and I look forward to reading positive results very soon. All our love, A, S and M xxxx

  2. Maddalena says:

    The pun worked for me…but then you know they are my comedic raison d’être.

    p.s. I am sure you have lots of people who are on the job of getting you things you would like or need or fancy but if there is anything you’d like to set me on the case of…just say the word.

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