The earliest songs on Little Rapids – lost direction and do nothing, were written around the time I met the band. My old friend and supporter Ian Dalziel posted a comment on Simon Sweetman’s stuff music blog drawing attention to Cardigan Bay, the solo album I had just released.
South Brighton resident Luke Sole saw Ian’s comment, listened to the album and got in touch, suggesting a jam.
I like to say yes to opportunities. Ten days later I biked down to Luke and Kate’s house in Pine Ave with my guitar, song book and a bottle of wine .
Meeting Luke to play music was a bit like a first date . I didn’t know what to expect. I was very nervous. We sat in Luke’s music room and played a few songs from the album and decided to do it again. It all went really well. Because it was Christchurch there was a connection between us. Kate’s dad Bruce, was Stephen’s Macintyre’s brother. Stephen was my friend and band mate in All Fall Down.
Within a few weeks Luke organised a practice to include Ryan and Ben. Luke had played in Fraser Ross and the Felt Tips with Ryan and knew Ben from ante-natal class.
Two Thursday’s later, Luke, Ryan and I made the small room at the back of Luke’s house feel really cosy. It was filled with drums, amps, mics and a PA. We were a few songs into the practice when Ben arrived, plugged in Luke’s violin bass and joined us mid-song. We had an immediate congruity of style and approach. Sympathetic playing and harmony. It was fantastic. I was old enough to be everyone’s dad.
Luke and Ryan organised a couple of gigs for early October. Over the course of eight practices we got a twelve song set together.
I was nervous about playing live again. It had been five years since the last LEDs performance, and over a dozen since I had last played guitar on stage. I practiced the set everyday, and towards the gigs, several times a day . Luke, Ben and Ryan got their parts down quickly and the gigs went well. Sumner was calm, measured and tight. The Darkroom was fast, energetic and exciting.
We kept in touch. Busy lives and circumstance lead to a gap of fifteen months until our next gig on the beach in Sumner. We played a spirited set of eight songs to a large crowd at the end of a long afternoon on the sand. We had a couple of practices at Ben’s place before a support gig at Blue Smoke on a cold, wet Sunday night to a dozen or so people. We played nothing by range and a new song about my Wiradjuri heritage . The guitarist from Atlas danced through the whole set. It was a total blast.
Ben and Jules had another child, Ryan recorded his debut solo album and Luke moved to the country . I released saturations, my next solo album. I worked with Luke on three songs towards his first single and played on and produced Ben’s Schofield Spires’ album, Belafonte.
Luke and Kate got married on their farm in autumn 2018. Ryan and I caught up over a beer in the teepee. After some nervous thinking I sent Ryan 19 reasonably finished songs . Three weeks later Ryan sent me wonderful drums tracks for what became the Always Running and Little Rapids albums.
We’d begun 2018 with a fantastic family holiday. We spent three hot weeks on the West Coast. We had amazing weather at Punakaiki and Okuru. Nature blessed us with amazing tidal pools to swim in at both locations. We swam, ate and relaxed. I had 43 swims. It was one of the best times of my life.
Over the course of the holiday I noticed the lymph nodes under my chin on my right side were bigger than normal. I could feel them.
We got back to New Brighton early February. The garden was hammered. Nico went back to school and we all got colds. As we got better I thought my lymph node should go down. Over the next couple of weeks it didn’t, so I booked an appointment with my Dr, Sam.
Sam gave me some anti-inflammatories. I had a problem tooth that needed a crown on the right side of my mouth. I googled…perhaps that was causing the problem? I booked a dental appointment . $1500 later my tooth was crowned. My lump remained.
Another month, another doctors appointment. I’d had melanoma in 2010, so Sam wanted to be cautious. He was concerned about secondary melanoma. Me too. Jake’s rugby league playing boyfriend on Shortland Street had just died from that.
Blood tests showed no sign of cancer. Sam booked me in for a fine needle aspiration of my lymph nodes.
A couple of weeks later Amanda accompanied me to a new lab in Papanui. It helped incredibly having her there. She started coming to all my appointments.
A dour Doctor in a dark room stuck needles in my lymph node trying to get cell samples. It hurt like anything. He dug in and twisted round, hoping to scrape out some cancer cells. A lovely nurse tried to ease the vibes with friendly humour and talk of the beach. After a couple of weeks I got the results. It was good news, no cancer was found.
We waited for my lymph node to go down. It didn’t. Sam wanted to be safe. He put me on the waiting list to see a specialist at the Ear Nose and Throat Department at Christchurch Hospital.
ENT is on the fifth floor of an earthquake impaired building on the river bank in town. It’s called the Riverside building and it’s shabby. I waited with the other clinic patients for my name to be called. Mostly, we weren’t called in any apparent logical order – it wasn’t alphabetical, or in the order of arrival. There were two waiting rooms. Reception directed you to one or the other. We learnt over time that the order you were called in, or the waiting room you were directed to, could be ominous.
Various doctors did things to me. They looked up my nose and down my throat. They inserted a camera to do this sometimes. It was unpleasant. They had an anesthetic spray they’d squirt up my nose. It didn’t help much and dripped a nasty chemical taste down the back of my throat for the next hour .They weighed me and asked me the same questions every time. Lifestyle questions. Did I drink ? did I smoke ? They never asked if I ran or ate meat. I wanted to tell them. I did and I didn’t. I had a lot of blood tests.
ENT booked me in for another fine needle aspiration, this time at the hospital. A few weeks later a young doctor took all care to lessen the pain . It still hurt like hell. He took eight samples this time. He had a pathologist with him to check he had enough cells each time. I waited for the results. I was told they would call me within ten days. After two weeks they hadn’t called. I jumped every time the phone rang. I phoned ENT to see if there was any news.
‘did I have letter ?’ they asked.
no
‘wait til you get a letter.’
I waited another two weeks before getting my letter advising me of an appointment. Amanda and I turned up for the clinic late on wintry Wednesday afternoon.It was my Dad’s birthday, June 10th. We were directed to the bigger, brighter waiting room near the offices. It slowly emptied out as appointments were filled. Patients and their support people vacated chairs, left their magazines where they’d sat and shuffled off. Soon there was only us and one other couple. The ENT specialist boss called me in. He had a very big office . I sat down. It was quick. I’d waited long enough. He was kind and straightforward. He employed the sandwich technique of giving bad news. Sam had told me about the sandwich once when he was operating on me. You start with Ok news, drop in the bad news and then finish with some Ok news. It works well.
“So Blair, earlier this year you had a fine needle aspiration test, and that came back as negative, showing no cancer.
Well, this time the test came back positive, You have cancer.
We will fight it. We will go for a cure. “
I asked if I could get Amanda. I’d said I’d get her if it was bad news. Her face dropped when she saw me.
The Doctors didn’t know exactly where the cancer was sited. Up in behind my tonsils was as specific as they could be. They would do further scans and tests to try and make things clearer. The specialist explained treatment would be a combination of surgery, radiation and chemotherapy. Radiation would be the main component of the treatment. I knew chemo was bad. I’d just seen Chris Warner experience it for his leukemia on Shortland Street. I asked about radiation.
Radiation and it’s side effects were ‘very much worse’ than chemotherapy, the doctor said.
As with the Cardigan Bay album, most of the songs on Little rapids were begun on my Uncle Ian’s old acoustic guitar. Guitar and piano formed the bed of most of the songs, with a heavy vocal harmony approach on top. The overall vibe was low-key and pastoral, especially in comparison to the uptempo energy of always running. It was going to be a harder sell.
I was initially keen for the songs to have a lot of space when recorded. My optimistic mental touch stone was a Bert Jansch song, life depends on love. It has what I think of as a late 60’s / early 70’s big L A studio sound. Spacious, with a lot of expensive sounding air. I wanted that for the album I’d recorded in my shed with midi drums and one borrowed microphone. Ryan’s drums had improved the songs immeasurably, but they needed more.
I asked Luke to play some acoustic guitar. He is a terrific player and I knew he would add a lot. Over the course of the next few months we recorded a couple of songs at a time. Luke played Kate’s lovely mellow guild guitar and my Hofner. The songs gained in rhythm, warmth and body with each new session. It was exciting.
A couple of weeks after my diagnosis I had a P.E.T. scan at a private clinic in town. No food prior and a large amount of water needed to be drunk before the 8am appointment. I took the sedative they offered, was injected with radioactive sugar, and experienced the whir and groans of expensive machinery over several hours. The results took about ten days to come through and again were inconclusive, other than indicating a general area behind my tonsils.
I was booked into hospital for a day about a month later . The plan was to take some tissue samples under general anesthetic with the aim of establishing the site of my cancer.
Ryan’s drums added life and energy to the songs on Always Running . They spurred me on to keep pushing the songs- re-doing vocal parts and adding more synths. I did some final mixing and got the cover art together. I took a photo of a large painting I’d just finished, bought a new version of comic life to do the layout, and wrote a press release. I sat on my bed early on a Sunday morning in mid July and put the songs on Bandcamp . I sent out download codes and the press release to the usual reviewers, web sites and radio stations. I paid an Australian $10 to put the album on Spotify and other streaming sites.
Two days later we parked in Cranmer Square at 6.30 on a very cold Tuesday morning. We sloshed through ankle deep puddles in the dark, and arrived at hospital with wet feet and plenty of time for my 7 am check in. My bag was stuffed full with my new Deka dressing gown and Farmers pajamas, book, toilet bag, slippers and headphones. Aside from my expectations, it was a lot like going on holiday.
I introduced myself at the ward’s reception window.
“Oh, you shouldn’t be here yet. Your surgeon’s not on until this afternoon. Come back at 11. “
We trudged around town sight seeing in the dim light for an hour before heading back to the car in Cranmer Square. It was freezing. I tried to get some sleep. At ten we headed to the art gallery to have a wee and sit to try and warm up.
We walked slowly back to the hospital through wintry sun, and wet leaves. Up to the ward, we checked in and I robed up.
A lovely Doctor Emily admitted me. She had been a fine artist prior to the earthquakes. She asked me a lot of questions and examined me. Next the anesthetist examined me and asked the same questions Emily had asked. The surgeon came next to examine me and ask me the questions again.
About 2.30 I took some pre-op. sedatives. My phone buzzed. An email from Under The Radar said they’d put an article up about always running. Yay !
At 3pm I said goodbye to Amanda and was wheeled to surgery. The nurses joked as the meds kicked in. I woke in post-op. confusion and had the first of three lemonade ice blocks. After an hour I was wheeled back to my ward to wait for the anesthetic to wear off. I ate a piece of brocolli about six and passed on the rest of the vegetarian dinner. The nurse was keen to keep me in overnight, but we were reasonably keen to get home. Hospital wards are busy and noisy. I was able to prove I could walk and was released about nine. The nurses were super nice and we were grateful. It had been a long day.
Three days after the operation I got an email from Karyn Hay’s radio show. Would I like to chose someone else’s song for the ‘play it forward’ segment ? You bet ! I sat at the dinner table with a tall glass of fizzy wine and croaked my way through a wonderful chat, barely able to believe who I was speaking to – Karyn Hay, a total legend. We talked a bit about my process, always running and chippies, then played math teacher by Schofield Spires.
People were taking notice of Always Running. Russell Brown said nice things on Public Address, Grant Smithies gave me a great review on Nine to Noon and Graham Reid reviewed and questioned me for his Elsewhere website. A French compilation picked up so special now and Serbia took an interest. Radio One did an album giveaway, None of it matters got to #10 on BFM, and Heavy Lifting #4 on Radioactive. Always Running got to #5 on rdu and was included in their 7” singles club. I was interviewed by The Star . They sent a photographer around on Nico’s birthday. I didn’t mention the cancer.
Amanda Mills’ piece about me finally went up on audioculture.
On-line literature advised my throat would become more painful 5- 10 days after surgery. It was. I did very little for a fortnight and barely left the house. Food was limited to soft and bland. It slowly improved over the following weeks. I enjoyed a lot of ice-cream while sitting on my bed. I gained weight. Hospital were keen on that.
The results from the tissue samples took several weeks to come through. They were inconclusive. Despite having had my tonsils removed when I was seven, I had just had a tonsillectomy. Apparently tonsils can grow back, and mine had. They had since been removed and found to be cancer free. The doctors still did not know the site of my cancer.
We got a letter advising us of a meeting to discuss my treatment plan. The clinic was based in ENT. The patients and families gathered in the waiting rooms, waiting to be called . Amanda and I were eventually ushered into a large room filled with upwards of twenty people . The people represented the various hospital departments that would be involved in my treatment. Surgery, anesthesia, chemotherapy, radiation, dentistry, ENT, dieticians, speech therapy, social workers…There was another patient that afternoon who shared my surname which led to some initial confusion regarding my health and symptoms. My lungs are fine thanks.
The doctors were patient, friendly and kind in the meeting.There were so many of them in the room. Each advised us of the plan of action. It would consist of thirty sessions of radiation over six weeks in conjunction with six weeks of chemotherapy – one session each week. I would not necessarily have to stay in hospital. I would go in everyday for treatment and appointments, and then I could go home. yay ! I got to stay at home.
I asked if we would be able to get away to Wellington that weekend for Campbell and Becca’s wedding and they said sure. We’d had flights and accommodation booked since earlier in the year. It was a relief to know we could go, and great to have something to look forward to.
I bought a new jacket and shirt at H and M and we all had haircuts. I took a photo for my mum and used it as my promo shot for Always Running. I spent two hours with the hospital dentist getting my teeth in top shape.
It was a terrific weekend – old friends, the wedding and Wellington were a breath of life we all needed. It was amazing to be in a functioning city and show Nico some of the sights. Te Papa, KK Malaysian, Fidels, the waterfront , haloumi cheese and Phoenix Cola. I drank beer and talked synths and bands with Hayden and Marcus. We ate too much and forgot about hospital, doctors and what lay ahead of us. The clouds out of the plane window sat in lines, like furrows over Christchurch.I took a photograph and it became the little rapids album cover.
Over the next few weeks we met with the separate hospital departments. They outlined how things might go. In the course of chatting to the chemo doctor, it came up that I was a musician. The usual chemo drug has the possible side effect of deafness, so it was decided to switch me to a newly funded alternative, that did not come with the potential risk of deafness. The new drug came with heavy acne, but that would be temporary they said. I would also need to start chemo a week earlier than planned.
Another meeting, a diagnosis and a welcome decision. The cancer was caused by the HPV virus. They would only treat one side of my neck. I managed to avoid having a feeding tube [peg] inserted in my abdomen. The radiation team showed me the treatment suite I would be using and where I would get changed. I spent an hour getting my radiation mask made. Hot plastic was moulded over my face. The mask enables you to be bolted onto the radiation table in the correct position for your treatment.
I knew next to nothing about HPV other than Nico was still waiting on his second vaccination for it. I looked it up. It was a virus, an STD. Heck. Oh that’s right, it’s what Michael Douglas had.
I’d had a lot of blood tests and needles in the previous few months, but the chemo is next level needles and complicated computers and pumps. Patients sit in comfortable remote controlled chairs for a few hours while saline and medication is mixed and pumped in through the veins. It’s precise and complicated. Two nurses check you are getting the drugs you are supposed to. Patients take anti nausea and steroid pills prior to sessions. My sessions took a few hours . You were allowed to wheel yourself off to the loo – which you usually had to, thanks to the liters of saline going in. We ate lunch, chatted and read our phones. Lunch was provided. A small banana, vegetable soup, a cheese sandwich, a meat sandwich and some yoghurt. We always offered our meat sandwiches to our neighbours. It was a busy place. Sometimes the needle really hurt.
The nurses in chemo were lovely. The radiation therapists were lovely. Our go-to was Tash, my leading nurse professional, She was amazing. Organised, professional and kind. Tash and the other hospital staff made everything as easy and pleasant as they could. They took an interest, indulged in my need to mindlessly chat [to take my mind off stuff] shared jokes and answered our questions.
The Cancer Society, the Variety Club and others worked hard to make things as easy as they could for patients. Dry July bought the comfy chemo chairs. There were hot drinks and murals on the walls, Cancer Society volunteers to drive you if needed. There were a lot of people dedicated to helping.
My radiation appointments were mostly early in the day. We dropped Nico off at his friend Rua’s house at 7.30 three mornings a week for our early appointments. On other days treatment was timed around afternoon clinics and chemo. Each Friday I was given next weeks schedule.
I loved the early morning walk to hospital. We would park the car near the river in town, and stroll slowly past Hagley Park, Christ College and the gardens towards the hospital. On arrival downstairs in the radiation suite I checked myself in with a bar coded card and waited for my name to be called in the lounge. There’s tv, a box of cancer hats, knitting, puzzles and magazines. Coffee, cordial, other drinks and water are available. Once your name is called you walk through the corridor and grab your paper bag containing your treatment smock from your cubby hole and get changed in one of three rooms. It was a sort of kimono, laced up from two sides in a way I never fully understood. It felt a bit Luke Skywalker. I kept my pants and shoes on and took my bag of top clothes and waited near your treatment room. When it was my turn they walked me down a short corridor and into a large room treatment room. At the far end of the room there is some machinery and a bed shaped table.
Two therapists strap a base onto the table and place your individually shaped neck support on top. You state your name and date of birth, then lie down on the table. The therapist loosens your smock from your shoulders and places your mask on you, covering your head, face and shoulders down to the middle of your chest. The therapists make sure you’re in the right place – I usually needed my chin up and my shoulders back – and then they bolt the mask [and you] on to the table.
The therapists make final minute adjustments to the positioning of the table, run through their checks, and then leave the room to begin the treatment. They turn up the Spotify music. I let them choose the songs. The funniest selection was don’t fear the reaper. I was super pleased to hear here comes the sun three times.
The machines whir and click into life. You hear machine noises, some buzzes and servos moving. When the treatment begins there’s a crackling and a different buzz. There’s bright light and something is moving back and forth . I closed my eyes and got deep in to the music. What was the bass doing ? the drums ? the backing vocals ? I’d follow the bass line and drift off. It was meditative. Radiation doesn’t take long. Only a minute or two, and the therapists are back, removing your mask and being kind. It never hurt.
Every second Monday I had a chemotherapy clinic. They would weigh me and talk through any chemo – related problems. My main problem was my rash of acne. Fortunately my chemo drug came with a bit less nausea than the others.
On Wednesday afternoon and Friday morning I had clinics for radiation. They would weigh me, take my blood, take note of various aspects of my health and prescribe accordingly. They’d talk through the side effects and what we might expect – and how to try and cope with it. The speech therapist and dietician would also spend some time, checking up and advising. I had exercises for my mouth and neck which I diligently did. They were tiring, but I wanted to keep talking, eating and drinking and avoid a feeding tube. I’d seen a musician lose his voice on Shortland Street to throat cancer. I didn’t want that.
Normally I never eat eggs. My diet reduced to water, scrambled eggs and Fortisip drinks, and later to just Fortisip and water, for four weeks. Fortisip is a drink for people that can’t manage any solids. It has a lot of fibre, fat and protein. Each small drink is 300 calories. They are reminiscent of milkshakes and come in chocolate, banana, strawberry and vanilla. They kept me alive. I loathe them.
My taste is all over the place. In one respect my sense of taste is severely diminished. I can’t taste the flavours of the food I’m trying to eat. I can however taste a combination of medication and the effects of my disease – the tumour, ulcers, mucous and inflamed throat. Nausea from the chemo drug, antibiotics for my inflamed skin, heavy mucous and the ulcers make you less inclined to eat.
Its hard not to lose weight during treatment. I was an overweight 87 kg when Cardigan Bay played at Blue Smoke; 76 kg when I had my tonsilectomy, 81kg at the start of treatment, and 75 at the end. Two weeks after treatment I was 71.5, and four weeks after, 71.8. Two months later I’ve dropped to 65kg.
If a patient loses too much weight they are put on a saline drip. This happened to me a couple of times.
Medications affect your digestion. The antibiotics for my skin caused nausea and constipation. The morphine and Panadol cause constipation and nausea. I take laxatives and anti nausea pills and try and hydrate. It’s a perfect storm. I hope things return to normal when I no longer need the medications.
I began eating scrambled eggs two weeks after treatment finished, and began small amounts of different foods a week later. It was painful but possible. Kings soup was the first food I enjoyed. Each day I try and eat a little bit more. It’s gradual. Each bottle of Fortisip I don’t have to drink is a small victory. Eating a small amount every two hours is easier to cope with than three bigger meals.
My skin broke out five or six days after my first dose of chemo. I noticed a redness after my bath in the morning, and by lunchtime I was covered in spots. I had a scarlet rash from the top of my head to half way down my chest. I was covered in hot, itchy, lumpy spots. Layers on top of layers. I walked around with my coat collar high and my head down. People stared. It’s human nature but I found it hard. I knew I looked weird.
I came up with slogans for T shirts I could wear to hospital.
“because of cancer” or “ because of HPV” or “because of loving “
or ‘just like Michael Douglas ”
I didn’t go anywhere but hospital for a couple of months.
I was given antibiotics, but things got progressively worse, so they doubled my antibiotic and gave me a cortizone cream. The increased chemo dose plateaued the severity of my rash. It improved slightly over the next month but four weeks after my last dose of chemo the rash got worse. Two more weeks of antibiotics followed. I’m hoping the pits and scars it’s left will fade over time.
The hospital learnt from my acne. The next patient started antibiotics prior to chemo. I was glad to help.
I’ve taken lots of pain killers. I began with Panadol tablets, which were replaced by a thick orange Panadol liquid as swallowing became more difficult. They added morphine elixir, morphine tablets, and then a stronger morphine elixir, and then stronger morphine tablets..…they all helped, until I could no longer face the liquid Panadol.
Hospital is warm and airless. I love fresh air. I live in an old, cold house and sleep with a window open through frosty winter nights. Treatment and hospital leaves you feeling tired and a bit yuck. In radiation the lighting is pleasantly dim, but most other places it’s bright and unfriendly. I’ve never left hospital feeling well.
My birthday came and went. I couldn’t eat a birthday croissant or drink my birthday orange juice. We decided to put my birthday off for a couple of months.
Illness has reduced what I’ve been able to achieve in my creative life. Most days I do something. Sometimes I’m too sick. I didn’t paint for a month but decided to change that and began some small pieces. Jonny dropped off some wood offcuts and I started a new piece most days for a couple of weeks. I began a large painting, which led to others as my interest, skills and ideas came back.
Writing music in intense situations can be tricky. I avoided music completely when I had melanoma in 2010 and consciously tried not to write earthquake songs in 2011, but I didn’t want to do that this time. Work is life. I needed to keep doing both things – working and living. I wanted to keep singing especially, given the worst case scenarios the doctors had mentioned.
Music gave me agency and a sense of self when most of my day’s decisions were in someone else’s hands. How you plan your day and week as a patient is a juggle of appointments and family responsibilities. You then have to juggle your medications around appointments, food and wellness…all facets of your life over which you have no control. To play music and paint amongst this was to be myself, and the version of me I wanted to be, a creative and active participant in life, rather than just being the passive, sick patient.
I tried to avoid my health experiences as a lyrical subject. It crept in. I wrote a lot of songs lying on my bed or on the couch in the lounge. Most began with piano chords played on the laptop. I’d add some words to get my idea and redo them later in the shed. It’s been a freeing creative process. Singing is harder than it used to be. Quite often I can only sing a couple of words at a time. My range is smaller and my tone is thinner now. I can’t push my voice as hard. I have to sing in a gentler way. I’m still working it out.
Hayden’s synth parts arrived half way through treatment. He had a new synth, a D S I Tetra. I slotted Hayden’s parts into the songs. They were warm and thick, and a terrific complement to the otherwise acoustic feel of the tracks. I remixed the songs with Hayden’s parts louder and sent them to Ben, who was yet to do his parts.
After six weeks of radiation and seven sessions of chemo my treatment came to an end. I’d witnessed the joy and excitement of others as they finished their treatment sessions, and had felt a mix of envy, sadness and a small amount of pleasure for them. My own finish seemed so far away then, and for the first half of my treatment it was. Things got better after the halfway point. From then, treatment was diminishing, and even as my symptoms and side effects worsened, things were tempered with a little bit of hope .…I was a little bit closer to the finish, and hopefully wellness.
Sometimes I’d allow myself to think of the things I would do when I was well – wellness- how great would it feel to be well ? Jamming these songs out in Ben’s practice room, meeting friends for food or a beer… I thought of fresh air in my lungs on a wet West Coast beach, boogie boarding and swimming with Nico, diving off the raft in Corsair bay, biking through the forest in South Brighton. I thought of the West Coast a lot – and eating all the foods l liked. Iced Chelsea buns from the Greymouth New World, vegetarian food of all descriptions, croissant, cake, lettuce, peppers, carrots, fruit, juice, alcohol, ice cream …all those things that weren’t Fortisip or scrambled eggs. I missed a lot.
By the last week of treatment my excitement was palpable. I was counting down the days: My last chemo, five radiations to go, four..three..and then I got sick.
After spending most of the day in hospital at treatment followed by a clinic, I went home and crashed. I woke in the early evening and began vomiting. We rang the hospital. My temperature was OK, so we did what they said. I stopped vomiting and slept a little overnight . I was up four or five times, like every night. About six o’clock I began sipping water and had my pills. I’d run out of Losec a couple of days earlier and had a lot of indigestion. I had an early treatment session and needed to leave home at 7.30, but by seven I was being sick again. I finished in time to nervously travel in to town for my treatment. We walked slowly south down Rolleston Ave, carrying an ice cream container and a towel in a supermarket bag in case things went bad.
Immediately after radiation I was able to take a bed upstairs. I’d lost 3.5kg overnight. I was given three litres of saline and anti-nausea drugs intravenously over the next four hours and began to feel slightly better. We were allowed to leave about 3pm. One treatment to go.
I was still unwell after treatment the next morning but we celebrated anyway. We bought coffees from the Beat Street Cafe and they were delicious. Coffee had been one of the few foods that hadn’t totally lost it’s taste through treatment. I had a small cup most mornings after my first lot of pills. We had visited the cafe for a coffee and something to eat four or five times over the previous few months. Dulling bad news, or celebrating ‘not as bad as it could be’ news with baked goods, scones, vege burgers and bagels. They were all delicious. I felt an immense sense of relief sitting in the car heading home. Going to hospital each weekday was over. Phew. I texted a few friends and lay on the couch.
Tash and the doctors and had been gently been telling me through the course of treatment that the side effects and unpleasantness wouldn’t peak until a couple of weeks after treatment finished. This had been a bit of a grey cloud hanging over the joy of ending treatment.
I tried not to think about it, figuring I’d deal with it the way I had dealt with the other things that had come along so far : Be in the moment, back myself and get through. I’d allow myself a few moans here and there. Early in my treatment my friend Rob told me about two Japanese words that helped me a lot : muzukashi and ganbatte. I loosely understood these terms to mean an acceptance that sometimes life is difficult [muzukashi] and getting through would take mahi, or work [ganbatte].
Things became tough. I got more tired and the pain in my mouth and throat increased. The pain from my radiation burn on my neck also increased dramatically. Soon I had a hand sized scarlet burn that was beginning to blister. Dressing the burn and medications became my day’s focus. By the end of my first post-treatment week I was spending most of my time in bed, sleeping as much as possible. I took a week away from my work. I read sparingly and dozed to the radio.
At the end of my second week after treatment Ben emailed to say he was sending his Little Rapids parts through. They arrived mid-morning on a freezing, wet Friday. By lunchtime I was wrapped up in the shed dropping Ben’s parts into the songs . They were perfect. As with Hayden, I’d not made any specific request of Ben, other than he should play what he wants. For some reason, I’d not considered Ben would play electric guitar. I’m really glad he did. Ben provided accent and emphasis where it was needed, and colour and shade where it was missing.
Little Rapids had come a long way from its solo beginnings. Ryan’s drums bought life and energy to the songs. They benefited hugely from the calm reassurance and sparkle of Luke’s guitar, and from the tones, melodies and emphasis that Ben and Hayden’s parts brought.
Work is life. I love the creative side of what I do, and in a time where most of my life has been in the hands of others, to continue to make music has been to continue being myself – with creativity, fun, achievement and agency. A richness for which I am very grateful.
Cancer and its treatment has affected every part of my body. My hair, skin, hands, fingernails, weight, moods, taste, smell, sight, hearing, stomach, digestion, breathing, appetites …everything I can think of has changed.
The two months post treatment have been more challenging than the two months of radiation and chemo. I’m mildly car sick all day, every day, whether I take pills or not. There’s been a lot of vomiting and retching, and a drop in weight to 65 kg. I’ve had thrush for the last six weeks. It’s all pretty normal for someone who’s had cancer.
Food is no longer a pleasure. Now its a necessary challenge. Nothing tastes the same. There’s a lot I can’t eat. I seldom want to eat. The diminishment of pleasure from life has been a noticeable part of being sick. Fun and enjoyment is mostly absent. You don’t see many people. The people you do see don’t see you at your best. Depression can be a big problem for cancer patients.
People ask how you are. You become conscious of moaning. How, what and when to tell people has been something to manage. It’s hard for everyone.
My beard is still mostly bald in the radiated area and I guess the back of my head is much the same. I don’t want to look. I’ve adopted a ‘comb down’ to cover it – a gravity assisted version of the comb over.
I get tired and fall asleep by mid afternoon. I’m reducing my morphine and Panadol as my pain lessens. I walk 3-4km daily and ride my bike. I can’t stand without getting dizzy. I’m not up to running yet. I tried for a couple of weeks but got sicker. I can enjoy a glass of dark beer every few days but anything more just tastes yuck. I’m cold all the time. I’ve taken nearly a thousand pills. Today I took nineteen.
I’m not angry or sad most of the time. I’m glad to be alive. Everybody goes through stuff. Earthquakes, deaths and illnesses. It’s been a harder year than we would have liked, but like all times in our life, it’s never all bad. You appreciate things – any day not going to hospital is a good day. Things are a whole lot better than they could have been. So many people have been kind to me.
The financial cost of my treatment has been immense. A single dose of my chemo drug was $1400. I am so grateful to live in New Zealand with high quality free health care.
I know vaccination is problematic for some. I’m so glad there is an HPV vaccination available for our kids. I don’t want them to go through HPV cancer and its treatment.
Life goes on. I have a wonderful family and friends. So many people helped me through this. Being sick doesn’t always stop your life. Some days you can get stuff done. I’ve helped Helen with her fantastic audio piece . I’ve recorded 43 new songs since my diagnosis. A few are really cool, most won’t make the grade. They all help.
Millie Smith taught Nico at South Brighton last year. Millie showed us that illness needn’t stop us getting stuff done. Doing stuff has got me through this far. I’ve mixed and released two albums while being diagnosed and treated. Always Running has been my most successful album yet and I’m immensely happy with the vibe we achieved on Little Rapids. I’m painting nearly everyday and learning new things. I paint for a few minutes and then take a break. I get dizzy, but it’s worth it. Writing is the same. Sorry for the typos.
The people at hospital say my body has experienced an insult and that it needs to recover and reset. It might take a year – or two years, or it might not ever happen.
Things might get better or they might stay as they are.
I will be seen by the hospital every six weeks for the next year, then every two months for the next four years. They have an 85 % cure rate
The cosy personal service of the Oncology ward has been replaced by the shabby fawn lino reality of ENT : self care and medication management . I’m relying on my life experience.
I eat half a block of chocolate a day. I’m rock star thin and I feel sick all the time. I’m obviously getting better. It’s just too slow for me notice. I’m looking forward to celebrating my birthday.
New Brighton,17-12-18.
blair parkes 
