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.

Why this? Why me?

I remember that when I was about to have an ovarian cyst operated on some time ago, the surgeon popped by on a pre-op visit and as he was headed off he asked me if I had any last minute questions. "Why did I get this?" I asked, and he gave one of those smiles that is not a smile. "That's the million dollar question but we don't worry ourselves about it, we are here to treat it", he said - or something along those lines. Despite that being a perfectly reasonable answer under the circumstances, the effect of his answer was to make me feel very small and stupid. It rankled, felt like that my most important concern was made into something amusingly trivial and obtuse.

Over the last six months as I have thought quite a lot about cancers of the head and neck, and throat cancer in particular, the question of why, or why me, has hardly figured. It is what it is. The literature says it is the 6th or 7th most-common cancer which makes it sound quite ordinary. On the other hand, I have read that CUP or Cancer with Unknown Primary, which is what I really have, accounts for less than 3% of total cancers. which would make it quite rare in terms of the everyday person. Plus, it usually affects males (3 out of 4 cases) who are heavy smokers and/or drinkers.

I very much like to spout that I have one of the rarer types of cancer, but that I am right on trend nevertheless, as in a general way I aspire to be in all facets of my life, in that it is the fastest-growing cancer today.

The medical system of course does not recognise ME as being this prescient, fascinating and unusual person with an uncanny knack for picking what is most topical and relevant. No. When I walked in to my appointment with my specialist despite having been kept waiting for almost an hour, I had to sit in silence while he read through the case notes. My case notes. Is this a technique designed to remind you that you the person are totally irrelevant and the only thing that is important is the clinical details of your case? For that is the effect. And no doubt, the truth.

Over his shoulder the only bit that I could read said

A challenging case.

Hmmm, I could have told them that without having to have two lots of surgery and a PET/CT scan.

He told me that the biopsies were inconclusive, just as the PET scan was. Rather than do further biopsies, they would start radiation at the end of January. No discussion of the side effects of that, and certainly no discussion around whether I wanted to have that treatment.

He poked around down my throat while I gagged on his finger - charming I'm sure - and then grabbed hold of my tongue using a paper towel and yanked it firmly to the right and then the left.  The indignity of it. I wondered if the man had eye-liner on. His lower lids had this dark line. The biopsies had not healed and there was some rawness that could be indicative, of what he didn't really say. When I said that my neck had begun to be a bit sore, he murmured something about disease activity and said the treatment would be directed at that.

He did have some good news for me though. I tested positive for HPV-16 virus. Human Papillomavirus. For some reason that they don't understand the success rates with radiotherapy increase dramatically when HPV is present. He said the odds were about 88% for success. As opposed to things I had read that gave the likelihood of survival after 5 years at 35 - 45%. In fact he said that of the 18 or so cases he had treated, all but one had been successful.

So that made me feel much better.

And now what I wonder is, what is the link between a virus and cancer, and why is not being researched? There is this article in Nature.

 “In Europe, HPV-positive oropharyngeal cancers have almost quadrupled in number over a period of 10 to 15 years,” 

There is research, and what is known is that the virus' DNA occupies normal cells and uses their machinery to generate proteins that cause a couple of key tumour-preventing proteins to stop working. One of those critical proteins is silenced but not shut down completely. In non-HPV related cancers, that protein is actually itself mutated. Somehow radiation and chemotherapy allow that protein to work again in people who have HPV. Whew - it is a seriously a good thing to have HPV.

...HPV-16, [is] a particularly dangerous strain and the main cause of cervical cancer. [There are] two vaccines approved to prevent cervical cancer.

Vaccination for oral cancers is unlikely because to prove it is efficacious would involve doing tonsillectomies on healthy folk, and that ain't gonna happen. Plus, most people who get HPV don't get oral cancer. The risk increases with multiple sexual partners, but it is not known whether oral sex is implicated.

All very interesting. I don't really care about the why me, but this is all quite fascinating.

Giddy-up, jingle horse

Ho ho ho - I made a christmas cake. It is Delia's recipe, except that I didn't have brandy so soaked the fruit in Amaretto. I even bought a special cake tin from restaurant supply shop in Rotorua, because Delia says that the secret to successful baking is to use the right-sized tin.

Smells delicious!

I offered to swap this cake for a raft trip at Okere Falls. And Tom at Foris has agreed, so I'm delivering the cake later this week. Anyone want to come down the river to help balance out the raft? Can't wait!

Swell and good

Followers - you may want to sign out now. Oh, I'll try to avoid the cliches, the ones that go like this...My 'fight with cancer'. Or, another common one, my cancer journey. This supposedly wonderful window of opportunity, bringing with it the chance to finally fully embrace life and live for the moment, cherishing each day and enjoying the sunshine. Every single time I sprout one those awful phrases, PLEASE please kick me. Promise? And really folks, feel free to sign off. Maybe it is not going to get nasty, but it might.

So I have not been posting anything lately because a 40-hour job and the garden have been taking up most of my energy. I began a new blog, Journeying, for my New York trip in April this year. Now I'm having a break from work again. When I talked to my boss a few weeks ago about my desire to resign, she said that HR would not accept my resignation. The option of leave without pay was discussed. I have 4 weeks - until after Christmas.

In the meantime I am truly swell and good. Not long after the New York trip I saw a lump on the side of my neck. That was seven months ago. The GP sent me to see an ENT specialist at Rotorua Hospital, who first did a needle aspiration (negative) and then an ultrasound, and finally a couple of months later decided to operate and take it out. That involved day surgery in Rotorua and a delightful week at home reading lots of wonderful novels - if you are interested, check out the Rotorua Library's Pinterest pages - one of them lists my favourite reads.

When I had my follow-up appointment a week or so later, he greeted me saying "You came alone. Your'e very brave". Clearly not good! He wrote down on a slip of paper "High grade Basaloid squamous cell carcinoma" and I tucked that bit of paper away so carefully that it never ever resurfaced. All along I been researching possibilities, lymphoma, rheumatoid nodule, harmless branchial cyst. I had it down as a 50-50 chance of being either nothing or lymphoma. Now I had something completely unexpected to google. The lovely ENT man sent me off saying that I shouldn't worry, that what HE was paid for, and it was very treatable, caught it early, etc. A week later I had a PET/CT scan. Radioactive tracer is flown up from Wellington and injected, and afterwards you exit by a side door having been told to avoid pregnant women and children for the rest of the day.

Somewhere during the waiting time that followed I saw my GP, who gave me a copy of the pathology report regarding the lump, and took a punch biopsy from a red spot on my chest that  had been previously zapped with nitrogen a couple of times. Why don't they just cut out these suspicious skin spots on the spot, which is what has happened several times in Australia? The long-term costs of that short-term penny pinching must be horrendous. The results came back indicating SCC, hello, is that a surprise?

SCC that has metastasised to a lymph node seems to be fairly serious. In several places I have seen research that shows the survival rate after 5 years is kind-of like 50%. As I have found out, for metasasis (seriously, I love that word) to appear on the neck almost always indicates that there is a primary source somewhere in the throat area. Head and neck cancer is the official phrase, and it is the 6th most common cancer worldwide, despite which I had never heard of it before. It is one of the fastest growing cancers - that is, statistically. One of the reasons it is on the increase seems to be that is often linked to human papilloma virus (HPV). Three out of four cases are in males. Who knew that skin cancer could arise in the throat - or for that matter in other parts of the digestive canal.

It is also quite common that no primary source for the cancer can be found - maybe because it can form deep within the complex structure of the nose and throat. So far this seems to be the case for me. The PET scan showed very mild activity around the tonsil area, but within normal range. I had to wait weeks and weeks to hear what the results were. Then in the same week I got appointment cards for both Rotorua and Waikato ENT clinics.

In Hamilton I was seen by Dr Theo Gregor, who scowled at the scar on my neck, and then chatted to his registrar about why the radiotherapy unit closes at the weekends. He gave me little information, just a piece of paper for the nurses to process - Fast-track Cancer Diagnosis. Four days later I was back at Waikato for another general anaesthetic, this time biopsies of the throat. At the same time the patch on my chest was cut out.

Then another long wait. Weeks of knowing nothing. I have another appointment card, so the story will continue.

BBC news today --

The number of people being diagnosed with cancer in the world each year has leaped to more than 14 million, the World Health Organization says.

The data for 2012 shows a marked rise on the 12.7 million cases in 2008.

In that time the number of deaths has also increased, from 7.6 million to 8.2 million.

WTF?