The snows fallen in the mountains outside the window. The first snow, the anticipated snow. Her friends and I drive up the mountain with shiny flask in hand, the kind Claire use to put tea in on our picnics to Lake Hayes. Turn by turn up the Crown Range on our mission to bring some snow to Claire. A few snow ball fights later, we are by her side… the snow melts on her forehead, I brush her wet hair giving her that disheveled stylish look of hers. Claire now in her final stages spends her time dreaming while awake, awake while dreaming. It’s not her body, not the one that I’m accustomed to. Hers was an athletic and strong body, one that I could lean on at anytime if I got tired on a hike. She would push me up the hill and we would shout together “One Claire Power Drive!” Today, she is like bone china, frail and fragile, people tippy toeing around her.
The light gets darker outside, and the grass disappears. Claire’s’ given us snow. “Too bad it’s a Sunday”, mom says, “it would be a snow day for the kids”. Sunlight suddenly shines, a Monkey’s wedding. We run to make a Snowclaire. “You have to roll it” Helen directs. “Look! See how nice my ball is!” “A” plus for Lissa’s effort. Chris is telling us about the big nose sandcastles he use to make with Claire on Oreti beach. I’m singing the Frostie song just trying to remember all the parts. “Where do we get coal? Does it have to be a button nose? I thought the international standard for snow people noses was a carrot?” She’s dancing, tilted to one side, warm merino fingers pointing to the sky, saying “yea, I’m ready to rock and roll”. We all laugh together. Claire’s made a snow day for us.
At night her breathing changes, short choppy breaths. The seven of us cram together in the little room talking to her, telling her how much she is loved… each of us trying to find a part of her body to hold. I get the front seat, the best seat, the beautiful seat… kisses and whispers so no one can hear, final secrets between us. John uses his long arms and manages to reach her foot. I look down at my own feet. Rainbow Froggy Socks. I’ve completely forgotten to do my laundry for days now and all I could find were a pair of her 10 toed Froggy socks. The laugh breaks the solemn affaire. Mom tells us that she use to always sing as a baby, Auntie tells the time when Claire broke into her home when she arrived early. I go to listen to her recordings. She is singing like a bellbird, singing with Josie a duet for me at our wedding “There’s only one thing that can see me through, there’s only one thing and that thing is you”. I am filled with love. I can hear the girls from the room singing to Claire. Claire slips away surrounded and filled with love.
At my last oncologist visit we decided to stop the chemotherapy and my Cetuximab injections, primarily because they weren’t working, and I’ve had enough. There’s no point doing something that makes you feel horrible and doesn’t reap any benefits.
So now I’m trying to make myself as comfortable as possible until it’s all over, and that aspect seems to be going fairly well.
I want to apologise for not being in touch with people more often via text or phone calls, but I’ve got a limited amount of energy at the moment. It’s not that I don’t want to talk to people, it just takes a lot out of me and I need to focus on keeping my core functions going and trying to enjoy each moment as much as possible.
I always appreciate words of support, but please don’t be offended if I don’t respond.
I also find it quite difficult and exhausting to spend extended periods of time with people – so again, please don’t be offended if I haven’t been in touch to hang out.
I would like to thank everyone for the wonderful last few weeks of time spent at my wedding and birthday party. I would like to maintain these happy memories for my sake, and also for yours.
In saying that, I’m not completely incapacitated – I still have energy to get up and go for walks and eat some food and spend time with the core figures in my life.
I want to thank everyone for how amazing their support has been over the last couple of months. Hopefully I’ll post again, but until then, I’ll see how it goes.
It’s been awhile since I’ve last posted and a lot has been going on; getting married, turning 30, being filmed for 20:20, chemo, CT scan, trip to Wellington……..
The wedding was a fabulous day. Picture perfect weather spent with friends and family. Lots of dancing and singing. I had a bit of a melt down the day prior. Somebody once told me that getting married and buying a house are two of the most stressful things you can do, but I didn’t quite believe them until it happened to me. That coupled with a film crew and chemo heightened everything, but on the day the worry was about nothing.
Next social event was a trip to Welliington for my 30th and the start of Bowel Cancer Awareness Week. The party was a huge success with dancing galore. Thanks to everyone who helped out.
On a campaign front, this week is Bowel Cancer Awareness Week. I have helped out with a fundraising/awareness raising party. Tomorrow (9th of June) I’ll be talking to Radio Active at 9.15 am about bowel cancer, then in the evening 20:20 is telling my story (along with another bowel cancer patient Jared Noel). Here’s the link to Radio Active and the promo for 20:20 – which is very dramatic. Please don’t mistake me for Elton John’s partner as I’m not having his baby. RadioActive can be streamed through the web as well.
http://tvnz.co.nz/20-20-news/week-june-9-4210556
On a health front I’ve had the highest highs and the lowest lows. I had one round of chemo and cetuximab on the Thursday after the wedding and it was rough. This was probably because of the fatigue from the wedding and for halving my dose of steroids. I felt that the steroids were making me more anxious but I think it was pre wedding nerves. I am also trying a different range of painkillers, moving on to opiates. I was a little hesitant as morphine, and it’s side kick codeine, have a bad rep. However it appears that pain is more likely to make you loopy rather than through the means of controlling it. So as long as you take opiates when you are in pain you’re less likely to get addicted. Plus other side effects such as constipation can easily be controlled with fairly innocuos drugs. First day of the regime and I feel much better than I have over the last couple of weeks.
I am also slowly but surely figuring out the best way to manage my Cetuximanb regime. For those interested here it is; 2 Monocyline tablets (one morning and evening for infection), showering I use Aqueous Cream BP, post shower I mix together healthE fatty cream and 0.5% hydrocortisone cream called DermAid. Every now and then I’ll have a bath with DermaVeen, which is essentailly mulched up oats. Mmmm porridge bath – but it takes away the itch. One of the hardest things is stopping myself itching the rash. I am trying will power but a ‘cone of shame’ or mittens would probably be more effective.
So next week I get the results of my CT scan and I’ll have another round of chemo. I haven’t been keeping track of my tumour marker count lately so I’m not entirely sure what is happening. I’ll let you know next week. Fingers crossed for good news.
There’s many people I would like to thank for making the last couple of weeks so special. Those of you who were organizing extroidineers, my whanau, speech makers, musical support (Go Gold Medal Famous, Queenstown Ukulele Orchestra, and Vorn Colgan), technology and photo support, Yoshi, Beat Bowel Cancer Aotearoa, Cancer Society those who travelled distances to celebrate with me and everyone else who partied with me.
Thank you Jefferson Airplane for lyrics that make no sense at all.
I’ll leave you with this excellent song (thanks Pat).
I never thought I’d be so delighted to announce that I have the complexion of a pimply faced fifteen year old. Once again my insurance company have agreed to stump up the funding for nine rounds of Cetuximab. Despite its foibles of unequal access and care I am on the better side of the US privatized health care system, which have now paid for two different drugs in a foreign country.
I am receiving Cetuximab weekly and FOLFIRI fortnightly. Tomorrow I will receive my second Cetuximab injection. One of the side effects, which may also indicate efficacy, is an acne like rash forming over your face, arms and chest. Hooray – I have that. It is unsightly and quite painful but I will figure out a way to manage it. The weather is definitely autumnul here and it feels really nice to stick my head out into the cold air. I am also trying to manage quite a bit of shoulder tip and liver pain. My inflamed liver is pushing on my diaphragm, which is causing shoulder tip pain – who would of thought those two areas would be so closely connected? Having cancer seems to be a constant effort to micro manage drugs, their side effects and pain. Managing pain is the most difficult because it changes in location and intensity. Some analgesia make you constipated or nauseous, and some are hard on your liver. Some just completely space you out (which is not a completely undesirable effect – but not all the time). So I try to mix them up a little. Sometimes I try to go off them all together to give my body a break and realize that my quality of life was much better on them, so why torture myself. I also spend a lot of time lying on the ground in various restorative yoga poses. I wish I could do a shaolin monk trick and meditate the pain away, but stilling the mind isn’t one of my strong points.
Other good news; chemo for Wakatipu patients will be done at Dunstan. From mid May about twenty five patients will only have to make the short drive to Dunstan hospital to receive their chemo. I will be able to receive both the chemo and the Cetuximab at the same time in the same place, which will save a whole day of driving and about half the amount of time I need to spend in hospitals.
Ka kite ano
Today was a pretty rough day. I got the results of the last CT and bone scan. The good news; the cancer hasn’t spread into my bones. The bad news; the cancer has spread in my liver and there are now a few slow growing spots in my lungs. It appears the FOLFIRI/Avastin combo has not been very effective. So the next plan of attack is to stay on the FOLFIRI and add Cetuximab into my regime. Cetuximab is another monoclonal antibody that responds to cancers which express an epidermal growth factor receptor. I have already undergone a test which identifies me as a likely candidate to respond to this treatment. However, like I’m discovering, some cancers are so aggressive and opportunistic it doesn’t matter what you throw at it. The cancer cells will keep evolving to respond to new situations and will continue to grow, even in environments flooded with cytotoxic agents and monoclonal antibodies. That’s partly why the cure for cancer is so elusive – each person’s cancer is so specific to that person.
There is one miraculous thing however. The cancer has not grown in my liver to areas that would clog up any ‘drainage pipes’, otherwise my outward appearance would be similar to the yellow of the Simpsons characters. Let’s hope it stays that way for as long as possible and the FOLFIRI/Cetuximab controls the cancer or even shrinks the tumours.
People talk about cancer being a battle. Through no part of this experience have I identified with this analogy. I feel like I’m on a slow moving train wreck, with cancer as the driver and me riding shot gun. My family and friends are all watching on the platform. Most battles have some kind of morality or ethical code, but this so called fight feels incredibly unsportsmanlike.
I am also constantly trying to rationalise this situation. It could be worse, I think. I could be going through this as a mother with small children. I could be going through this from an impoverished, uneducated situation. I’m lucky to be living in a country with free access to chemo drugs and insurance to pay for the extras (here’s hoping they come to the party and pay for the Cetuximab). I could be going through this alone; without the support of Yoshi, my family, my oncologist, and a whole bunch of incredible friends, some of whom I have made along the cancer journey. I feel lucky to be going through this process in such a beautiful part of the world. The Wakatipu area is my turangawaewae. At least I have time to talk to people, have meaningful conversations and eventually, say goodbye. At least I have time to get rid of those embarrassing photos – I really had a penchant for bike shorts with fluro patterns on the sides between the ages of eight and fourteen. At least I have time to raise awareness about the prevalence of bowel cancer. My symptoms were classically textbook. I am going to die from a preventable illness.
I have decided to donate my body to the Otago Medical school after I die. I discussed it’s use with my oncologist today and the cancer cells will be used for bowel cancer research, which I’m very happy about. So the evil cancer cells will gain immortality – feel free to visit them anytime and tell them to go f#ck themselves, unless they contribute to some excellent medical break through, then you can talk to them nicely.
As per usual I’ll leave you with a song. Thank you Anika Moa. Go kiwi music.
Hello everyone,
It has been awhile since I’ve last posted and a lot has happened. On a medical front I’ve had two infusions, a CT scan and a bone scan. My oncologist has a hunch that the cancer has spread into my bones, which is indicated by a highly elevated liver function test (that is often associated with cancer in the bones), and pain in my shoulder. My tumour marker count has gone up as well. As you can imagine this kind of news ‘harshes my mellow’, however until I get the results of the bone, CT scan and my next tumor marker count, it’s too early to say that the Avastin/FOLFIRI regime isn’t working. I’ve decided that currently my best medical barometer is my quality of life, and at the moment this is good.
I’ve just spent a fantastic week up in Wellington before heading to New Plymouth for the WOMAD festival. It was quite possibly the best festival I’ve ever been to, with amazing musicians, idyllic weather and surrounded by a posse of good friends. Yoshi and a few co-conspirators arranged a lovely surprise by getting Yoshi to arrive back in the country early and attend the festival with me.
On a mental and a emotional level things are going OK as well. I really delight in seeing people – friends and family, happy at the moment. I’m at an age now where my friends are getting married/having babies/buying houses/building careers etc. In an ideal world, I would obviously love this to be me, but the next best thing is seeing other people enjoying their lives. I get more upset when I meet up with people that are going through a rough patch, or feel hard done by from life, because my situation has only hammered home the uncertainty of the future. So essentially you may as well live life as fully as possible (sorry, I feel like that’s pointing out the glaringly obvious). The Buddhists already figured this out with the concept of mindlefulness or living in the moment. The future, my life span, my overall health at the moment is so uncertain at the moment so ‘living in the moment’ is the ideal that I’m currently striving for.
On a political front I’ve been trying to push a cancer awareness agenda. I met with our local Member of Parliament, who is also the deputy Prime Minister to discuss a few issues. I have attached what I spoke with him about below. Basically I wanted to point out that lack of awareness surrounding early bowel cancer symptoms by the general public and primary health care providers; the waiting time between a referral for a colonoscopy from a primary health care provider, which at the moment is unacceptable. The final points revolved around receiving chemo at a closer hospital to Arrowtown, and the provision of public and private drugs in the same place. The meeting went on for forty minutes and I felt like he was listening to me, but I guess you can never tell with politicians. The follow up has been a referral from his office to the pharmaceutical society of New Zealand and the head of the Southern Public Health Office to advocate on my behalf about public/private drug administration. I’m not sure what impact these people will have, but I’ll take all the help I can get. The media has also become involved and I got in the local ‘rag’ yesterday (article attached below).
I’m still tolerating the chemo/Avastin quite well. I was told there may be hair loss with these drugs but the only place I’ve lost all my hair is under my arms (weird – but on a beauty level highly convenient!). The nausea and the pain are still tolerable and I still feel able to undertake a lot of activities. I’ll let you know how I get on with the political lobbying and the results of the scans. I’ll leave you with a Massive Attack version of a Horace Andy song (which he played at WOMAD, and it was awesome), which I feel sums up my mood at the moment.
Much love to you all.
PS – I’ve just had my infusion and I always feel a little zen-like/peace,love and mung beans/chemo tweaked for a day after. Apparently it’s the anti-emetic steroids they give you.
These guys weren’t playing at WOMAD, but this song and video totally kicks ass and also seems to capture my mood at the moment (thanks pat-dog for the heads up).
News paper article
http://www.scene.co.nz/health-board-dithers-over-wakatipu-cancer-scandal/286525a1.page
Political rant to Deputy PM
Hon Bill English
I would like to draw your attention to an epidemic that is happening in your electorate. The Southland/South Otago region has the highest incidence of bowel cancer in the developed world. Nationally, bowel cancer is killing three times more people than the national average road toll. I am a victim of this epidemic. I am 29, I just returned to New Zealand after graduating with a Master’s from an American university, I had re-entered the work force, I was finally seriously contemplating marriage to my long-term partner. Then I was diagnosed with stage four bowel cancer. Statistically my oncologist has given me between six months and two years to live, depending on how I respond to the chemotherapy regime I am currently undergoing. Obviously I would like to beat these odds.
I would like to draw your attention to three issues around bowel cancer. The first one is waiting times for diagnostic testing. Apart from being vastly out of the usual bowel cancer demographic I exhibited textbook symptoms. However, after a referral from my GP to a specialist I was sent a letter to wait for five to six months for a colonoscopy. If I hadn’t opted for a private ultrasound and had an astute ultra sound technician and a good GP who urged my to get down to Southland hospital’s ED immediately, thereby effectively bumping myself up the colonoscopy waiting list, I would be in an acute situation and I wouldn’t be receiving the chemotherapy that is currently keeping me alive.
Due to what has happened to me, my brother has been referred for an urgent colonoscopy. He exhibits some symptoms and there is a possibility of an hereditary link and yet he has been on a waiting list for the last four months and is still waiting. This length of waiting time could be the difference between the removal of a polyp or primary tumour and the likelihood or a person re-entering society as a fully functioning member, or the cancer spreading to the lymphatic system or liver and facing an imminent death. Not to mention cost. The cost to the tax payer for treating cancer early is far smaller than the cost of treating advanced cancer which involves months or years chemotherapy, CT scans, specialist consultations, hospital admissions, sickness benefits, invalid benefits and travel assistance grants. I implore the current government to adopt a best practice model of conducting urgent diagnostic testing within a two week time frame from referral.
My second point is the lack of awareness around bowel cancer. A year or two before this diagnosis I happily went along to my GP to have a suspicious looking mole removed because I have absorbed a very successful ‘slip, slop, slap and wrap’ melanoma public health campaign. Up until November last year I didn’t have a clue about the symptoms of bowel cancer. But if we look at this graph (graph is on previous post), we can see melanoma has a very low mortality rate (which is great), but bowel cancer is very high.
The only awareness raising I’m conscious of is a little by the Cancer Society and a non-government funded group called Beat Bowel Cancer Aotearoa. If we had greater awareness among GP’s and the general public we would invariably be saving lives and returning people as fully functioning tax and GST paying members of society. To quote a cliché, Mr English, the ambulance for bowel cancer is at the bottom of the cliff. I would personally like to see fewer patients, families and friends dealing with the situation I am currently going through at the moment. I urge the current government to work with organizations and primary health care providers to raise awareness among the community about the early warning signs of bowel cancer.
My third issue regards the administration of public and private drugs by the public sector. I am in the fortunate position to have a private drug funded by US health insurance, called Avastin, which will extend my life span (incidentally this drug is approved by the USA FDA and is publicly funded in Australia and Canada). The bureaucratic powers that be said yes, I could receive both public and private drugs administered at Dunstan so I received one round, but now they have said no. I must go to a private hospital for a private drug and a public hospital for the public drugs. Both hospitals are in different directions from Arrowtown. I don’t understand why I can’t receive public and private drugs at a public hospital or at Dunstan. I am not pushing my way up the waiting list nor I am taking up hospital beds. I receive the Avastin at the same time I receive the publicly funded chemotherapy in an outpatient capacity and I pay a $250 administration fee for the Avastin infusion. If I could receive all the drugs at the same time it would vastly improve the quality of my life plus those of the people looking after me. I would like to know why the government doesn’t adopt a combined public/private model for drug administration. This model has been adopted widely and successfully overseas where ultimately the needs of the patient are put first.
I urge you to consider these issues that are affecting the people in your electorate.
This has been a tough time for New Zealand. Last week a 6.3 magnitude earthquake struck the largest city in the South Island destroying many buildings and claiming lives. Christchurch resembles a battle zone rather than the picturesque garden city it is usually known for. The scenes shown in the news are not typical of a developed nation. Tragedy is not happening somewhere else, nor is it hushed behind hospital doors. Everyone is trying to comprehend the situation in their own way and, without diminishing the situation, I find myself relating to what is happening according to what is going on in my life.
Before September last year Christchurch wasn’t overtly considered as a quake center. This quake is a random event. It makes me believe even more strongly in the randomness of life. A city gets destroyed in seconds. A seemingly healthy 29 year old gets a terminal diagnosis for a supposedly old person’s disease. Things don’t happen for a reason. Sometimes things just happen, both joyful and tragic, and as much as we would like to rationalize the situation, it is impossible. If you try to rationalize what’s going on you’ll drive yourself mad with the what if’s and the why’s.
I often have National Radio on during the day and it has been heartening to hear how the country has rallied to support Cantabrians. I am not suprised however, as through this illness I have experienced the warmth and generosity of family, friends and stranger, much of which is being exhibited in Christchurch at the moment.
I am feeling good since the last infusion. The combination of chemo and Avastin hasn’t exaggerated the side effects. I have another scan at the end of March so we’ll see if this cocktail is doing the trick. I was fortunate to have that round at a closer hospital than usual, however the bureaucratic powers-that-be have decided they don’t like a patient receiving public and private care at the same place. Now it looks like I’ll have to go to two different hospitals in vastly different directions to receive all the drugs I need. Next week the deputy Prime Minister is in town so I’m planning on questioning him about this situation. I’ll let you know how I get on.
Here’s a great talk on how Avastin is going to help me fight this cancer. Plus more information on how you can reduce your risk of cancer (or angiogenesis) through your diet.
http://www.ted.com/talks/lang/eng/william_li.html
(sorry I can’t seem to link it so you’ll have to copy and paste)
Chemo number four has come and gone with thankfully very little fanfare. A little bit of nausea, but nothing too intense. The exciting news this week is the inclusion of Avastin into my regime. My US insurance has come to the party and will be paying for this drug to be administered in New Zealand. Avastin is a monoclonal antibody that works in conjunction with my existing chemotherapy regime. It works by cutting off the blood supply to the tumours. This drug does not proclaim to cure bowel cancer, however it may give me a few more good months. I am very happy about this outcome.
The more I learn about bowel cancer the more horrified I am at its prevalence in New Zealand and how little attention it gets, compared to breast, melanoma and prostate cancer. I attended a bowel cancer awareness evening not long ago where I learned that Southland and South Otago has the highest incidence of bowel cancer in the developed world (NZ is the red column).
Why isn’t there more awareness? Well, talking about bowel movements is not the most engaging dinner conversations. Plus the symptoms can explain many other gastrointestinal problems. However, considering the amount of press the ‘slip, slop, slap and wrap’ campaign gets and it’s occurrence, it seems alarming that funds aren’t directed into any kind of public awareness for bowel cancer.
Screening is also difficult. There are inherent risks and flaws with the current screening techniques. Colonoscopy’s are expensive and invasive. Fecal screening can be inaccurate. I read about a trial that was conducted in japan where dogs were able to sniff out bowel cancer. Perhaps, Rosie’s (our family dog) penchant for embarrassingly sniffing new people’s crotches shouldn’t be considered such a faus pas!
A year or two prior to this diagnosis I happily went along to the doctor to identify, and ultimately get cut out, a suspicious looking mole thanks to a successful public education campaign. I hope in the future there will be increasing awareness surrounding bowel cancer symptoms, so there can be a more holistic public effort in reducing the number of people dying from this illness in New Zealand.
Thanks Dr Chris Jackson for the graphics (and for being a great doctor).
Just got back from chemo #4 with my new accessory ‘da bomb.’ I thought I’d share with you some other accessories I’m finding quite amusing at the moment especially for Skype dates (thank you to the art department at MiraCosta College)
First meet Albert – he totally digs peer reviewed research.
Now meet Freud – he deals with any heavy emotional stuff I might be going through (or you, if we are skyping).
Introducing Pocahontas – I like to get here to deliver bad news to people via the internet because I’m pretty certain she went through some people rough stuff in her lifetime too. I’m sure John Smith was probably a total a-hole and then all the white people most likely gave her family small pox.
And lastly my new prop, courtesy of the New Zealand taxpayer, known even by medical profession as ‘da bomb’ (well, I inserted ‘da’). Here we are trying to look bad-ass killing those cancer cells.
