Day Two

I'm in treatment phase at last. Day Two and feeling normal. I'll explain how it goes just to set the scene.

The worst thing so far? I have to wear a bumbag for 5 whole days. This is what it looks like. The tube from the bag goes into the line in my arm. I had the line put in on Monday and it will stay in place for the next 2 months. Means I don't have to have needles for blood tests or meds, the PICC runs into a major blood vessel near the heart. Mostly once I am dressed properly the line is invisible, but for showering I need to wrap the dressing to keep it dry.

I never did pass glad wrap 101. So trying to wrap my arm with one hand is a bit of a joke. And I'll know for next time that a hair wash before chemo will be much easier than trying to shampoo while attached to a bottle. So what's in the bag?

This is one of the drugs that I have in three doses. The other one was a smaller bag of something purple that was infused over an hour. That happens in the chemo day unit, where they have beds and recliner chairs and cups of tea and magazines. I talked with women who has been going there once a week over the past 12 months and was cheerful about everything. Chirpy is the word to describe her as she is as light and active as a bird.  

Chemo day stay

In my medicines box I have a variety of anti-nausea drugs and I don't intend to hold back on them. 

Radiation is 5 days a week for 7 weeks. I get 8 zaps, and the whole thing takes about 10 minutes, most of which is making sure the mask is lined up (that means I am correctly placed on the table inside the mask) according to the complex requirements that hopefully ensure the same places receive the pulses each time. It is painless. 

The hospital is a 20 minute walk from the Cancer Lodge. Today I walked along the lake to the Boat House, stopped for a coffee, wandered up through the rose garden and along to the big white house on the hill. coming back I went the other way around the lake. 

From the Lodge there are views across the lake but my room faces the other way - east, across the town to the hills. Room 18 is mine from Monday to Friday. Everyone goes home for the weekend. I drove this week but once the side effects start to take hold there is a door-to-door shuttle service to Rotorua that I can use. All this - the Lodge, 3 meals a day, transport - is funded through the Cancer Society. Know that your donations are doing good and are appreciated. 

Waffle-face

I got to try on my face mould again today. They did another PET scan, with me fitted into the mould and the tattoo spot on my chest lined up by laser beam. Waffle-face is how I looked when they let me loose again. The mould fits quite tightly across face and head and I could feel the imprint afterwards.

It was an up and down day. I met the medical oncologist who I call Dr Chattanooga - well, I met his registrar who showed more interest in me as a person than I have encountered with any of the hospital people I have met so far. Prashanth is in his fifth year as a registrar, and has chosen to specialise in oncology. He seemed to be exploring the concept of why this type of cancer and why now. Had I had any major stressful events in my life in the last 18 months or so, what was my relationship status, drinking habits, supplements taken regularly. Prashanth poked around with my tongue and looked down my throat and told me what had shown up on the MRI and asked me if surgery had been considered. He went off to talk to Dr Chattanooga and the great man himself then came and spoke with me, but the surgical option wasn't raised again in the discussions that followed so I don't know what happened to that idea. He said he's not going to use Cisplatin, which is commonly used in cases like mine, but rather a combination of Fluorourcil and Mitomycin. I remembered Cisplaten from the biography of cancer book. Is is one of the earlier chemo drugs and nurses knew it as Cisflatten, because in the days before there were effective anti-nausea drugs, it caused the most violent nausea ever seen. So a lucky escape - thanks Dr Chattanooga, I love you already! He said 3 lots of chemo, but each will be run in slowly, over several days via a line called a PICC that will be inserted into my arm and left in place for the duration of treatment.

Then I got to see the radiation oncologist again. I call him Dr Vitz. He is the one who wants to be certain that I am one hundred percent committed to my relationship with him (he told me last time that I am going to hate him down the track a bit). We talked about the Peter MacCallum option and whether I had let go of that. He said "it's no good spending time dreaming about and wishing that you could be driving a Porsche, instead of getting on with the car you actually have". I suspect Dr Vitz already knows me too well.

Along the way I lost the cheeriness that I started the day with. I  think what threw me most was that the chemo drugs need to be ordered in, and the physics of the radiation treatment need to be calculated, and it is all going to take at least another 2 weeks. So not next week. Lesson here is, I am just along for the ride. It is no good making plans and thinking I have it all under control. I can't, don't. And it is no way no Porsche either. (Not that that will stop me from turning the music up loud and pretending)

Unfortunately I don't have a lot of confidence that anyone is actually in control - they are all making it up as they go along and they each make up their own little bit of the picture in their own time.

Who's counting?

So I decided it was just too hard to organise an international move in a hurry ahead of starting treatment. The lovely people at the Peter MacCallum centre talked to my people in Hamilton, and I got an email to say I was booked in for another biopsy in NZ on the Monday after I got back. That was another day surgery experience. Margaret came to pick me up from the recovery room and spoiled me as usual. This time it took only a week to get results. I saw the registrar, a different one this time, who had done the surgery. He said he'd taken quite a bit out, so that explained why I'd been given morphine at the hospital. He didn't think it had been at all obvious to the eye, so it is interesting that the Melbourne guys were so convinced just by looking. Yes, biopsy result was consistent with squamous cell carcinoma. That is a good thing, because it allows the chemoradiation guys to plan a targeted approach that will be much less damaging in the long term.

Treatment has been delayed a week and is now due to start on 10 Feb. They have booked me into the Cancer Lodge in Hamilton for the 7 weeks of daily radiation. I'll have radiation 5 days a week. It only takes 10 minutes or so each day. I'll be having some chemo at the same time, not sure what or when. I'll stay at the Lodge Mon to Fri and there is a shuttle bus to Rotorua.  

Meantime I have learned a bit about how to make sense of cancer statistics from reading a beautifully-written and compelling book by Siddhartha Mukeherjee - The emperor of all maladies: a biography of cancer. He won the Pulitzer Prize for Non-Fiction for this book, written in his spare time between being a dad, a doctor and a researcher.

There are more people than ever getting cancer. But part of that is because we are living longer, and the chances of anyone getting a cancer diagnosis increase quite dramatically with age. The overall survival rates are improving, but only slowly, and the overall success rate is driven by improvements in treatment in a couple of areas.

People diagnosed with breast, bowel and ovarian cancers and non-Hodgkin's lymphoma are now twice as likely to survive for at least 10 years compared to those diagnosed in the 1970s. (UK Cancer Research).

Yes, treatment has improved for these, but earlier diagnosis and better screening programmes help significantly to account for the apparent success. Still, one in 4 deaths in the US is due to cancer, and across the whole lifetime 1 in 2 men and 1 in 3 women will receive a cancer diagnosis. In Australia, cancer is the leading cause of total burden of disease. Across Australia, 4,000 people this year will get a diagnosis similar to mine (though 3,000 of those will be males).

• For 2006–2010, five-year relative survival for all cancers combined in Australia was 66.1 per cent...Relative survival rates for cancer have increased in recent years (Cancer Australia) 

That one is presented to sound good - well, we are winning aren't we? Or are we? Read it again. Only 66% of people who are found to have cancer are going to be alive five years following the diagnosis. Is that good? Good enough?

One of the quotes I read today said something along the lines of -- treatment for cancer is like whacking a dog with a stick to get rid of fleas.

I had an MRI last week in Hamilton.

How an MRI works is another story, but having an MRI scan is a pretty weird experience. It takes quite a long time and the machine is very noisy. Very Jetsons-noisy actually. For something so high-tech it sounds very retro space-age, grinding and pulsating and clanking away, completely drowning out the (ghastly) music of Coast radio coming through the headphones they provided.

I can't help but think that cancer treatment today, for all this state of the art technology, has not greatly improved over where it was in the days when all they could do was cut out the obvious tumours and hope they'd got it all. Chemotherapy itself can sometimes cause similar mutations as happen with HPV, resulting in even-more rampant and aggressive forms of cancer, and so can radiotherapy. Still, if it is all there is to get of my fleas, I might as well submit to the stick.

 

Designs on Melbourne

The heat wave persisted through the five days of my visit to Melbourne - the longest heat wave on record, the papers reported.

So I spent a lot of time sitting in air conditioned cafes and browsing around the shops in the city where I could go from store to store without being blasted by hot air. The best coffee I had was the brzillian blend at the Sensory Lab which is just inside the David Jones menswear store.

I did manage to get myself one block away from the core of the city to check out the Design Dispensary shop on Little Lonsdale St. I wanted to get Matt and Tal some of these bookends.

They are recycled from old Melbourne bricks, sculpted by a UK architect as one-off pieces. He did book titles to order, but these are the only ones left now that he has returned to the UK. I also loved these stools which come in lots of different designs including my favorite, which looked like a stack of books glued together.


They are strong enough to bear 200 lbs each, and light enough to pick up in one hand. And they ship as a flat pack to NZ. Not that I need stools! But I love them.

At the Peter MacCallum Cancer Hospital in Melbourne there is a whole section for head and neck cancers. They probably see a couple of new patients just like me every clinic day. It took just a week from my first enquiry by phone to being examined by the radiation oncologist and a surgeon. They both agreed that there is a base-of-tongue cancer. Either it is getting worse, or their cameras are better. They were surprised at the time it has taken for me to get a treatment plan. Why has taken so long, they asked, and all I could offer was 'Christmas?' That resulted in a bit of head shaking.

Anyway, better to have this confirmation than to be in the CUP category where I was (cancer of unknown primary). They are so onto it, so friendly and efficient.

Sadly it is 42 degrees in Melbourne today. I just don't function in these conditions. It feels like walking around in a clothes drier set to High. I don't know if this a factor in my feeling a bit overwhelmed by the concept of packing up my house in Rotorua so I could rent it out for 6 months,and moving to Melbourne and finding an apartment. Maybe boring old Hamilton is not such a bad place to treated after all. There seems to be some urgency about starting radiation, so it would have to be done quickly if I am going to move.

When I ventured out of the air-conditioned hospital I went to Federation Square and visited some of my favourite paintings at the NGV. The Hotham Street Ladies have set up an installation which is a retro sitting room which is just about all furnished in items made from icing. Here's an example of their work, from the sign (letters about a foot high)

A mould is made

Off to Hamilton I went to meet the Radiation Oncologist, Chris Hartopeanu. The nurse told me he is Romanian, though I had picked up another South African accent - and yes, he did work there for some time. He took time to explain to me what the PET scan meant, and he relayed the essence of the discussion that took place about my case.

It is possible that I could choose to have the base of my tongue resected, which would mean that I could have a more-targeted, less compromising course of radiotherapy aimed at the neck area but sparing the throat (relatively sparing, that is - there would still be some effects). Not sure what resection means in this situation, but I gather they can take out the suspicious area and reconstruct the tongue and voice functions as best they can). But it would be likely that the cancer would remain active and resurface, and so the safer course is to be more aggressive with the radiotherapy. I gather I could even insist on having further biopsies done rather than starting any treatment, given that the first lot found nothing.

The consensus at the meeting then had been in favour of radiotherapy of the bilateral neck area (because if there is something in the throat, then it can move to the lymph system on either side) PLUS the area at the base of the tongue around the tonsils. He reckons that this will almost certainly clear the cancer completely. Here's that But again...it is going to cause permanent loss of quite a lot of salivary gland function, which brings its own dangers down the track. He urged me to get a second opinion. I gather that he was here in the realm of the psychology of being a cancer survivor - making sure that I am fully certain that I have made the right choices from the beginning will affect how well I cope with what is to come.

Ok, that's the not-so-fun bit, now here's the rest - they have a Mould Room. I guess it is like a library where keep everyone's moulds. You wear the mould each time you get the radiotherapy so that it goes to exactly the same target each time. I had my mould made today, and also got a spot tattooed on my chest for helping to line me up on the machine.

The grid over my face is the mould - it is a flat sheet that they warm up, it goes soft, they press it firmly over the head, then wrap it in a cold towel which sets it.

Then I had a CT scan which will be used to set up the radiation dose plan, so they injected tracer into the line in my arm - which is pretty funny stuff because it makes you feel for all the world like you have just peed your pants, except you don't. Whew. And the machine does a washing machine noise and slides in and out of the scanner.

 
Pretty cool?

The nurse was going to then put in a P. E. G., but lucky for me they decided that can wait a bit. The PEG is why I got a professional strength blender. When my throat starts to feel like it has been sunburned, I can slug spinach and broccoli directly into my own stomach via a syringe through the tube!!! Let's just hope that I don't actually have to do that very much. Still, it would make it easy to choose between a chocolate and a bit of broccoli. "I'll have the artichoke and asparagus puree now, yum."

I visited the Cancer Society's Lodge, and all I can say is, thank you thank you to all the people who donate to the Cancer Society. It is like a 5-star hotel. Minus the mini-bar. Ok, not quite 5-star.

But wait, now comes the REALLY fun bit. I got home and rang the Peter MacCallum in Melbourne, and I'm off to see them next week. A holiday in Melbourne instead of a week at work at the Rotorua Library? High five!

Work window

It was back to work today. I have 2 weeks before treatment starts so it's an opportunity to get a bit of income. Also a distraction. I am refreshed and have lots of good ideas. The best thing happening at the library is that the contract has been signed to digitise the remaining issues of the Hot Lakes Chronicle, which was Rotorua's first newspaper. The National Library will work with our microfiche, converting them first to film, then scanning and adding the content to Papers Past. So I achieved something during my time at the Rotorua District Library.