Hair today gone tomorrow?

Who would have thought my thick curls would give up the ghost so quickly? It is not just coming out from around the neck, but all over. It is going to be interesting to see how much I'll actually be left with after the next lot of chemo. I am scared to touch my hair because so much is coming out.

On the other hand I have to use all my will to NOT touch the itchy lumps around my neck that drive me crazy. I got an anti-histamine today so I hope that will help. I also have itchy palms. Isn't that a sign of madness? More likely madness is a result...I feel it coming on fast.

The radiotherapy team is just wonderful. They are not nurses, but every one of them has the qualities that you expect great nurses to have. Every day they make me feel like I'm the most important person in the world. They offer encouragement and endless words of advice and any little concern I raise is treated as serious and worthy. I don't know you thank them, but they are an exceptional bunch of people with amazing technical skills and fabulous people skills.

My lift to Rotorua on Friday was an experience. The other passenger is at the end of his treatment. He was the oldest person here at the Lodge - 92. His hearing aid batteries were running down and my ulcers were making it very painful for me to talk, so the driver, his neighbour and friend, had a hard job keeping conversation going. She has just lost her husband after 55 years of marriage. So two things, funny how many people 'lose' their life partners, like I must have put him down somewhere but I can't remember where; and then like how old is Ngaire anyway. She put her foot down and we went, mostly 20 k over the limit for whatever speed zone we were in at the time. She flew past trucks at the crests of hills and sat close and lead-footedly on the tail of the hapless driver with a trailer that she complained wasn't even carrying any weight so why should it be travelling so slowly. Isn't the speed limit 90 when towing? Turns out she was a stock car driver and took part in the first women's stock car race event in NZ. Butter wouldn't melt in her mouth. Meanwhile I was nearly melting in the back because she obviously didn't believe in using the air conditioning. Stock cars wouldn't have such frivolities of course.

Miso soup

A cup of miso soup is the first thing I have actually eaten or drunk for several days. My meals involve a large syringe and the tube directly into my stomach. "It's a mind-game" the nurses reminded me this morning. So I'm playing harder today. I took the anti-nausea drugs, and - easy peasey - soup by straw. I can do this! What's next? Hmmm, a coffee and a piece of toast would be just fine. Another lesson - don't skimp on the meds. I am such a slow learner.

The Rotorua shuttle service has gone to ground overnight, but I have lined up a trip with one of my colleagues  for this afternoon, after I see the acupuncturist.

Tufts of hair coming out but only around my neck. Probably won't be noticeable at all.

Tired

Early radiotherapy today - 7.15am. Leaving me a day to actually go out and do something. Except I might just rest.

Dr Vitz was coming in to work as I was waiting for the van to bring me home to the Lodge. He is a lovely man. He asked me how I'm going and he said, I'm going to take a bit more of the colour out of you yet, but you'll have it back soon enough.

And he said keep up the morphine. I told him I'd only taken half the dose and he told me to just take it. "It won't be for long and it is the lowest strength."

David Lankes posted on his cancer blog a year ago this post about how to Use Cancer.

A chance encounter with a busy oncologist who takes the time to give words of encouragement. A hand-shake from a stranger in a hospital corridor in the middle of the night, he took my hand in his both and pressed strength into me. A huge hug from my builder, a man who knows deeply how to use cancer. The wonderful team of staff on the Pink Machine who line me up on the table each day and are never not interested in even the smallest problems and questions. Emails from friends with news and pictures from the real world.

A very special hug from my hairdresser Leeanne, who cut my hair short and urged me to drop by any time, no appointment necessary, and they'd shampoo my hair for me for free. A good thing about it being short is that the tufts now coming out don't look too bad. And it is only around the neck that will go a bit bald. I don't think anyone except me will ever notice.

Cancer - a 'busy' condition

It certainly is a full-time job, undergoing cancer treatment. All those books I was going to enjoy - into my 3rd week at the Lodge and I have flicked through a few pages of one North & South magazine. The book I have on the go at the moment is the very sweet and dryly funny 'Major Pettigrew's last stand'.

But I only seem to manage a few pages at a time. My main job today is to rehydrate. I can only sip water, and it is quite painful. I am unable to get enough fluid in by mouth. Thank goodness I had the PEG feeding tube put in last week, and thank goodness it went well, as I have meet a couple of people who who got infections and had a very painful time with it. Mine was done in the Rotorua Hospital thanks to the madness of regional Health Boards and their funding streams. I had to have early radiation on Thursday morning, 7.00am, and then travel to Rotorua for a 10.30am hospital admission. An overnight stay and then straight back to Hamilton for 10 minutes on the table being zapped, and finally back to my little house Friday afternoon. My sister Deborah was here last week so she did the driving. Nil by mouth for most of Thursday was not what I needed. On the way to Hamilton I made Deb buy me some tubes of baby food. She did well, she chose organic vege with beef - and I can tell you that stuff tastes dusgusting (as we say in NZ). Then I tried a muffin at the Italian bakery in Tirau, and found the only way I could manage a couple of mouthfuls was by pouring milk over it. I couldn't even drink my cup of tea. A strawberry ice cream hit the spot, but I am tying to avoid sugar, not just because sugar feeds cancer, but because of the thrush in my mouth.

So although no one had instructed me on how to use the feeding tube I started using it on Saturday. Deb bought supplies of Fortisip and I worked out what to do. I couldn't find any advice on how many to have in a day, but I had an appointment with the dietitian yesterday and she says I need 6 a day. She worked some magic and bingo, 2 cartons of the stuff were delivered to my room at the Lodge last night - basically free of charge. Sorted! I'm using a big fat syringe to put it down the tube but later on I can have a stand that will drip-feed nourishment and fluid in overnight. 

It is really hard to talk because of ulcers on the sides of my tounge and having a mouth full of thick saliva, plus opening the mouth and moving the tongue is becoming more difficult as the radiation affects those joints or muscles or whatever it is is that creates the articulation for speech and swallowing. So I got back to Hamilton this week on the shuffle bus, mumble mumble. Will I need to tie a slate around my neck? Then if I got cross, I could scratch it. I have been warned to keep sipping water so I don't forget how to swallow. Apparently it really, really hard to relearn. So even though plain water tastes disgusting and hurts, I need to keep sipping. 

It is relatively early on to be getting this breakdown in my mouth and I wonder if 5 years on the rheumatoid arthritis drug isn't the reason, as I already had a dry mouth and impaired taste. I have morphine now for pain relief - well I Have it, I have not taken any yet. Mild sedation might be a fine thing. 

Just to complete the picture, I also have a red spotty neck which makes the soft cotton sheets on my bed feel like the fabric has turned to hessian. 

While I was in the Rotorua Hospital, I had some wonderful conversations. Part of the new me is that I talk to strangers in waiting rooms and corridors. Three of these conversations had a common theme which was how to revitalise local marae, and in particular the importance of the marae as a knowledge repository. And all these people, even the lovely Katarina from Minginui who is in her 80s, agreed that the stories and histories need to be recreated in digital formats to engage the mokopuna. 

Well my friends, I'm off now to take in a few more syringe-fulls of water. I shall visualise it as being as refreshing as the waters of Hamurana Springs 

 

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.