Wednesday, 26 March 2014

Not much happening in cancer-land (or maybe lots)

Bit of a stir at the Cancer Lodge this morning. The local Lions major fund raiser for the Lodge is the launch of the Balloons over Waikato festival. They organised a bus, ring-side seating by the Lake, and hot chocolates for patients and their friends; a demonstration to the public of the real services they provide to support people from around the region through their treatment. Rather than going on parade I opted for a spot on the sofa at the Lodge with a good view of the Lake and was ready to blog the event live, except this is about all that happened.

It was a fizzer. A passing front brought a wind sheer factor that it made it too dangerous for any of the balloons to get off the ground. One balloon in the form of a giant birthday cake was inflated but just wobbled and tottered before collapsing back to ground.

The other event of the day was also a bit of a fizzer, but in the best way. One bit of plumbing was removed - I had the PICC line in my arm taken out. This signals the end of the chemotherapy so it is really a milestone to celebrate. I was spared another round of the 5-day chemo drug and only had one infusion that took about 30 minutes, and now it is all done. I am so pleased about it. And I'll be able to enjoy a proper shower again, not having to fuss about keeping that arm as dry as possible. My mouth is a bit of a mess, but the only thing I can do is to keep up hourly mouthwashes, alternating products throughout the day. I need to keep a checklist of what I have had and when. In between I have taken up cloud-watching. So much for all the things I was going to knit/read/watch/listen to. Walks to the shops and the lake have become shuffles around the perimeters of the Lodge. And why are there not fold-down seats in lifts?

For an outrageously tender and raw read, I recommend Australian prize-winning author Carrie Tiffany's Mateship with Birds.

Very raunchy birds, kookaburras, but which is the driver, sex or family? And what a beautiful cover.

Tuesday, 18 March 2014


Sue Kedgley, a stirrer from way back, had an article in the paper yesterday Time to swallow hard truth on mercury. She suggests it is time we ask the government to ban mercury amalgam fillings. Whether mercury in fillings is a danger to health is controversial but there is no doubt that mercury is poisonous. Once removed, old fillings are considered toxic waste.

Before I started treatment I saw a retired doctor who offers infusions of high-dose Vitamin C. He was a little too strange for me and he didn't actually offer me an infusion although on the public holiday when I saw him there were several women in the waiting room hooked up to drips, all looking fairly perky and happy. He did give me a lecture on the health risks associated with my mouth full of old fillings. He said that there has been the biggest cover-up ever on the dangers of these fillings - similar to tobacco company claims that smoking doesn't cause cancer - and that the scale of class-action lawsuits that will result when the truth comes out will far exceed anything that the tobacco companies faced. Whether he is right or not, the message I got was that he believed my particular cancer to be a direct result of all those fillings, most done by the school dental nurses in the 1960s.

The only good thing about having to go the dental nurse was that she'd always send me home with a small box of quicksilver, liquid metallic mercury. It gobbed into perfect spheres that wobbled and rolled when poked, and if poked hard enough, broke into lots of smaller balls that shot out in all directions and on meeting up, gobbed back together into bigger and bigger balls until there was just one again. I played with it endlessly - poking and prodding, probably never washing hands afterwards and most likely losing bits in my bed or on the carpet. Does anyone else remember playing with quicksilver? According to wikipedia, quicksilver is not easily absorbed by the skin nor by ingestion. So maybe it wasn't all that criminal to send kids away with a box of mercury to play with.

As for the fillings themselves, too late to worry about them.

Still, I agree with Sue Kedgley, it is time NZ took a stand and banned amalgam fillings. Of course they'll say it will force costs of dental care to soar ever higher, but we have to shift expenditure from health treatment to health promotion and disease prevention.

Wednesday, 12 March 2014

What I'm reading

First a new word. Bolus. You never use it in your whole life and suddenly it is a major part of your day in two different contexts.

I have two of them that are fitted each day on the radiation table. One is a bit of moulded thin plastic that is taped to my neck so it it sits in precise position under the mask, the other one is taped to the outside of the mask. Me, them and the tattoo on my chest are lined up using lasers so the eight blasts of radiation are delivered to the exact same spot each time. The bolus (two them, what would that be, boli?) works to bring the beams closer to the surface of the skin.

Yesterday when the tape was peeled off gently, it took a patch of skin with it. I was sent around to the nurses and given a tube of honey to dab on the raw area. It is doing fine. Just sticky.

The other use of this word is as in bolus feeding. That is when you manually administer the 'food' (Fortisip it is) using a syringe to pour the feed down the tube. Which I try to do every 2 hours.

Just so you know.

I finished reading a book which I probably could have done without at the moment. I left kind old Major Pettigrew behind in Rotorua this week, so took up this by Evie Wyld. All the birds, singing.

The setting is a remote sheep farm on some windswept and desolate English island. Jake keeps to herself, running the farm with Dog, but things are getting strange, as in sheep being violently slaughtered and unwelcome presences that are malicious, senseless and threatening. Gradually the back-story of Jake's early life in the dusty heat of north-west Australia is revealed. The book is dark and at times terrifying, but it ends with a sense that even the worst scars heal in time. It is a good book, she's a very talented writer. I just feel pleased that I can get on to seeing dear Major Pettigrew build his friendship with the wise Mrs Ali.


I got a local acupuncture person to come to the Lodge last Friday, but he turned up just as they were closing so he only had time to do a quick poke at some pressure points in my neck. Show me how you swallow, he said, and I took a tiny sip of water grimacing from the sting of the ulcers on my tongue and blisters on my lips. Then he dug a knuckle into a spot behind my ear and I groaned in pain as he ground that knuckle in relentlessly before moving on to an only slightly less painful spot near by. When he had tortured along both sides of the back of my neck he said, now swallow. Gulp, gulp gulp I went, grinning in relief that the torture had stopped. He showed me how to find those pressure spots, but to tell the truth, for the whole weekend they were so tender I didn't want to touch them. Nevertheless, I felt immediately amazingly better. So I made an appointment to see him at his clinic.

He's a small round-faced chinese man with black-rimmed glasses wearing an immaculate crisp white shirt. If he knocked at the door you'd pretend to be out. Earnest and efficient. "You have cold hands. Cold feet. This comes from cold kidneys." He brought me ginger tea in a bowl and held it me to drink, like a chinese mama. He worked on the same points but much more gently this time, then he propped me up with several heat packs and put needles in my wrists and ankles. And left me to relax. He has given me powder for making ginger tea and some ginseng powder to add to it. "Every two hours you have." It is not the same withou him feeding it to me though.

The idea is to improve my circulation and get some appetite back. I did have some soup at lunch after my visit, but unfortunately again today the smells of lunch keep me out of the dining room. Must be time for more ginger tea. I am putting most it through the feeding tube with the Fortisip - at least it takes away the sickly smell of that stuff.

My mouth is much better than it was. Stopping the methotrexate was a smart decision. I think it was just an added toxicity that my body doesn't need right now. But I had to be sent to the doctor again yesterday when I came out in what looks like hives, and has spread across most my trunk and across my scalp, setting up an exquisite itching that makes me wriggle and jiggle and dance about trying for relief without scratching. I thought about tying my hands up in socks in case I scratched in my sleep. It came up before I had any ginger tea incidentally. The two doctors I saw were puzzled. Lovely Julie on the radiation team suggested that sometimes an auto-immune response can be triggered as the radiation kills off certain cells. If so, that seems like a good thing as the treatment must be working - of course I believe it is only corrupt and malignant cells that are being destroyed while all the good cells are getting stronger, which I know is way too simple, but that is the sort of positive image I want to hold onto right now. Take me to the April sun in Cuba - that's my theme song, with a stray line that goes "Cancer's on the run".

I am past the halfway mark with my treatment and so far I'd have to say I'm having fun. I still have not made it to the Hamilton library, where I imagined I'd spend a bit of time. I'm not missing coffee -- much. I have more prescriptions than I have had in my whole life so far - the latest being Phenergan which came with instructions not to drive and a warning that it can cause confusion. What was I saying? Oh, just blame the drugs.
Not much hair left now


Monday, 10 March 2014

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.

Thursday, 6 March 2014

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.

Tuesday, 4 March 2014


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.

Monday, 3 March 2014

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