Day 18: Thank you Alex and John (Tuesday 15 November)
November 16, 2011 1 Comment
Oh, what a night. Tossing and turning til 4am for no apparent reason. No amount of Tara, general clearing of my mind or late-night Words with Friends (aka Scrabble) would put me to sleep. The good thing about it though was that I didn’t have to get up for work the next day! The sum total of my ‘jobs’ today included getting breakfast (a more complex tale than it might seem at first blush), walking over to the hospital, and lying in bed all day receiving treatment. Wait a sec, I did get up for lunch.
Barely a day goes by without thoughts running through my head like, “where am I?” “what am I doing here?” and “how on earth did I get here?” The answers to these questions form a hazy blur in my mind spanning three weeks in October. It’s probably worth recounting some of the tale that has led me to this foreign land.
A couple of weeks after we got back from our big “end of cancer” holiday in Peru, I was diagnosed with a recurrence of Wilm’s Tumour for the third time. Tiresome, indeed. I visited specialists every day trying to figure out the extent of the recurrence and to identify a possible treatment programme. After a couple of weeks we realised that the disease had gone crazy and had not only formed four or five (I’m still not really sure) tumours in the kidney area, but also a couple in the pelvis and one in the armpit (presumably in the lymph nodes). I was scheduled to have surgery on 31 October but on the day that I had a PET scan to assess the full extent of the spread I also met with one of my surgeons (I appear to be collecting them). Let’s just say the meeting was short. He told me that the tumours were inoperable because of their number and location and I was sent back to the oncologist.
I can’t tell you how many times I’ve said “hope I don’t see you again” to my oncologist (he gets that a lot). But there I was. Back in the familiar surrounds waiting to see what my options were. At this point, I thought I had some options. Chemo fixes everything, right? Mum, Dad, Brad and me packed out the oncologist’s office eagerly awaiting some good news. There was none. Forget surgery, forget dialysis, forget everything. D-Day was nigh. I was prescribed a couple of different chemotherapy drugs, one of which I’ve had before and one which was a cousin of a drug I’ve had before. The purpose of the chemo would be to “buy time,” and prolong my life. But not save it. Grim.
I think there were eight days between getting the terminal diagnosis and leaving for China. How that happened I’m going to have to try and remember.
Obviously the news was shocking and confronting. Not knowing what to do, or where to turn. I had loosely agreed to start chemo because I didn’t know what else to do or that there were other options for me. I shared this news with family and friends but no one knew what to say. That was until I got the scientists involved 😉
Deep gratitude for Alex and John
The thing I like about scientists (at least the ones I know) is that they’re a very pragmatic bunch. Very interested in the facts and figures and not too concerned with feelings or ‘emotional stuff.’ Just what I needed! I had a long chat on the phone to my good friend Dr Alex Zelinksy who mentioned that his old boss from the ANU was also a kidney cancer patient. He didn’t know if it would help at all, but he’d put us in touch.
Over the next day or two I spoke with Alex’s former boss, Prof John Moore. John has been a kidney cancer patient for five years and is firmly saying yes to life. He has a different kind of cancer to me but we have a similar story in that chemo was not predicted to save either of our lives. John has vigorously researched and pursued many forms of treatment for his kidney cancer, and has travelled to various places around the globe to get treatment that is not offered in Australia.
Over the past few weeks John has been a lifeline, a god-send, a hero and a dead-set-legend. He has shared with me reams of good quality, reliable information about potential treatment options for kidney cancer. John was the one who put me on to SPDT treatment in China, and he has also helped me to better understand the other treatments that I am receiving here. He continues to check in with me on an almost daily basis and I am very grateful to have him as a new friend.
So, thank you to Alex for introducing me to John. Thank you to John for being so generous with his knowledge and time. You have both given me hope, which is of course, priceless.
I was lucky to wake this morning to my own personal tarot reading courtesy of the lovely Nathalie from Sydney. Today Nat drew the Six of Wands card for me; she was thrilled. Nat says:
“When we’re feeling challenged there is no better card to receive… it absolutely assures us of good news and ultimate success.”
Woo hoo!!! I’ll take the Six of Wands anytime. Thank you Nat.
Stuff I forgot to mention yesterday
I thought I was being so diligent with my daily recollections but when I was chatting on the phone to Tonya yesterday she pointed out that I was telling her a lot more than I had written in the blog. Sheesh. No rest for the wicked.
We found our money!!!
After Brad’s daily visits to the bank yielded no success in the money transfer stakes he decided to up the ante. Bring in the big guns. He took Allison to the bank. It turns out that various funds transfers from Macquarie Bank, BankWest and others (I’m not sure) had eventually come through. Not in the time frame we were promised, but the money was there. Each time Brad had checked on the account it had come up saying we had 5RMB in the account (less than $1). It turns out that he had actually opened a multi-currency account, so that the money we transferred in Aussie dollars wasn’t showing up as available credit in RMB. At least that part of the mystery was solved.
Of course, the trials and tribulations surrounding the money transfers are far more complex than I allude to in my brief summary. But I have abrogated all responsibility in this area and have left it to Brad so when (and if) he decides to chime in on the blog he can fill you in. I should say that I am thinking of getting the good people at the FIO (Financial Industry Ombudsman’s Office) on the case when it comes to this international money transfer lark. There appears to be almost no disclosure by the banks of what fees, charges and commissions will be charged along the way between setting a funds transfer in motion in Australia and having the money pop out the other end (in China, or anywhere else). Apparently any number of intermediary banks can be involved in this process and each of them is free to take their cut. Mamma mia.
Everyone has heard of the ubiquitous Chinese laundry. They’re everywhere – major cities in countries all over the world, and country towns to boot. Everywhere it seems, except for China.
The couple of laundries that we’ve found here in Xian appear to be dry-cleaning places, rather than normal old laundromats. They also appear to be hideously expensive. Brad has been quoted something like $6 to get a t-shirt cleaned. He was not up for this expenditure given that the t-shirt in question was one that we got from the Rivers outlet store for $5…
We have had laundry done in the hotel a couple of times at about $50 a pop. That excludes undies and socks because we bought some Omo and a bucket to take care of those J. (Like John F says, be practical…) Given that we can get lunch for $1, it seems out of kilter to pay $2.20 to get undies washed. I know hotel laundry is expensive at the best of times, but this seems really excessive.
Love in Xian
Not too much movement at the station on the matchmaking stakes. Allison’s young boyfriend appears to be taking a strategic and aggressive approach to keep in her favour. I hear there was even a dinner this past weekend that he invited her mother to attend! The only gossip I’ve got is that Allison and the young boyfriend (he’s 22, she’s 25) got sprung walking around near the hospital on Saturday – by the eligible young doctor! Apparently he was in the area with his dad and saw Allison and her current beau. I think she had hoped to keep her powder dry on that one but no cigar. If I understand correctly she has abandoned the idea of going out with her girlfriend’s ex-boyfriend. Phew. Crisis averted.