Spring descended on Auckland this weekend, with glorious warm blue sky days. Chores, laundry, groceries, catching up with friends in familiar places and spaces – it felt good to be outside. I found myself thinking back to spring last year when there was a very different sort of activity in the house: Jared was home from the hospice, Elise was 7.5 months old, the daily rhythms were Jared’s care and Elise’s routines. On one hand, Jared was dying and every day for him was an arduous mountain of fatigue and symptom management punctuated by visits from the hospice, district nurses, pain team, pharmacy, GP….on the other hand we were together again as a family, Jared was where he most wanted to be, and the changing of the seasons was accompanied by a new sense of hope and purpose.
David Williams, previously a stranger to us, had arrived on the scene to help Jared write his book – the book that many who read this blog had encouraged Jared to write. Each day, at 12pm, David would arrive with his iPad and camera, climb the stairs, sit with Jared for an hour and record their conversations. There were 21 conversations in total, covering everything from the story of Jared’s life to the reality of dying to Jared’s hopes and dreams for the book, and for Elise. These conversations, together with excerpts from Jared’s blog, form the basis of “Message to my girl”.
Jared’s commitment to the project was absolute. In many ways this was his “best” hour of the day, or, at least, the one he poured all of his available energy into. While battling pain, muddled thoughts and crippling fatigue, he would press on, aware that this final task was worthy of everything he had. Words can’t express our gratefulness to David for taking on this project. His courage, sensitivity and commitment to seeing Jared’s final dream realised were extraordinary.
“Message to my girl” is told in Jared’s words with his trademark openness, honesty and humour. It is a beautiful account of his life, and the purpose, courage and love that motivated him to the very end. My first copy arrived last weekend – I was struck by how proud Jared would have been that he had co-authored such a book and how precious this gift will be for Elise.
For me, the public release of the book is both exciting and anxiety-provoking – the spotlight was very much easier to share with someone as gregarious as Jared. However we were always united in wanting this story to be told authentically and honestly and the courage I need to gather for the next little while is nothing compared with that Jared displayed in his final weeks.
“Message to my girl” will be in New Zealand bookstores from Monday 28 September. It can be bought online at Fishpond and Mighty Ape (NZ). It is listed with the Book Depository (UK, ships worldwide) and may later be available through Amazon.
The official book launch will be on Monday 28th September at 6.30pm at “Crave”, 25 McDonald St, Morningside, Auckland. We’d love you to come – there will be refreshments, some of the key people telling the story of the book and copies available for purchase.
Finally, Spring presented the opportunity to introduce Elise to the snow. Her frown belies her southern roots….I have great hopes that future snow experiences will be more successful!
Beat Bowel Cancer Aotearoa (BBCA) is an organisation dedicated to raising the awareness of bowel cancer. A few years ago I was asked to be an ambassador for them to help them raise the profile of bowel cancer in NZ as it is one of our biggest killers. Breast and prostate are the fashionable cancers that celebrities get (although no cancer is actually fashionable) and people like to wear ribbons or grow moustaches to raise awareness for. Bowel cancer is a bigger killer than both of them combined and slides under the radar forgotten.
Leading up to Christmas this year, BBCA has launched the ‘I give a crap’ campaign that they hope will get spread via social media and the likes to help raise awareness of bowel cancer. The idea is to help people realise that if you actually catch it early by knowing what symptoms to look for, you can beat this disease. As part of this campaign, BBCA has put two videos together, which you can see here. See if you can spot me in one of them. 🙂
Help raise awareness of this cancer in NZ which only has a 55% survival rate (at 5 years) when compared to 75% in the OECD. Its easy to talk about bowel habits if you give a crap.
I give a crap this Christmas*….
*I probably recorded that line about 20 times till I had it nailed… ahh showbiz..
I recently had to do a presentation at work on a patient, for which I decided to present myself, since I had a semi-interesting presentation. This meant that I was able to get hold of my abdominal x-rays from when I first presented back in 2008.
The first is what was taken when I first arrived at hospital. There isnt too much to see on it, it was considered fairly non-specific in terms of findings, and as such, illicited conservative treatment.
Then there are the three x-rays taken 2 days later, when I was significant worse from a clinical perspective. These x-rays show some large loops of dilated small bowel on the supine, and air-fluid levels on the erect. All signs of a bowel obstruction, and as such I was taken to theatre within about 4 hours of these pictures being taken.
The rest is history.
This is a different style post than some of my recent ones, but it addresses questions and issues that any one with cancer needs to address during their treatment.
There is a lot of information and skepticism floating around with regards to chemotherapy. You only need to use google for a few seconds before you find many theories as to why chemotherapy is bad, pharmaceutical companies are evil, and why asparagus only diets are the cure for cancer. There is much conjecture, a lot of scaremongering, some evidence based ideas, and personal opinions.
The question is, how do you separate out fact from fiction? This is not an easy question to answer for the average lay person. When you are bombarded with so much information, what inevitably happens is people pick and choose what they believe based on their own preconceived perceptions, and what is most ‘comfortable’ to believe. When you are dealing with cancer, and its somewhat high mortality rate, people will grasp to what hope they can find, be it in false remedies, evidence based ideology, faith based theories, or in the reality in which they exist.
But the harsh reality is that almost all of those things do not offer magic bullet type cures for cancer. The claim that pharmaceutical companies are out for every dollar they can be more accurately applied to those that peddle herbal cures and cures based on diet alone. If eating asparagus could cure cancer, then it is highly unlikely that such information could possible be kept secret in the interest of pharmaceutical gain. Lets not forget the Doctors who dish out treatment, they genuinely have the patients best interest at heart, and to say that they are persuaded by pharmaceutical interests is basically hyperbole at best and out right scaremongering at worst.
Here are two interesting articles that are worth the read when you have the time. The first is by Malcolm Gladwell, and gives a pretty good synopsis of the state of play of pharmaceutical companies and the development of agents for chemotherapy. The second is from a website/blog that attempts the counter the myths about various aspects of medicine with evidence based research to back up what is considered the current consensus on any given issue. The article on chemotherapy is interesting, although somewhat loaded with agenda.
I have written this post in response to the fairly regular commentary from people who hear my story and want to reccommend a diet or a lifestyle or a herbal remedy that will cure or improve the odds of my survival. One particularly lady claimed that I needed to eat an alkali based diet in order to reduce the acidity of my blood cos ‘cancer thrives in an acidic environment’. Usually, I respectfully ignore suggestions like these, but for whatever reason, I felt I needed to point out the flaw in her reasoning. Firstly cancer does not ‘thrive in and acidic environment’, by its very nature, it has a high cellular turnover, and therefore a much higher metabolic consumption than normal cells in the body (something that current researcher are trying to target with therapy). This high metabolic rate means that as a byproduct, extra hydrogen ions (H+) are produced, H+ ions are responsible for acidity. I.e. cancer does not thrive in an acidic environment, it PRODUCES an acidic environment. Secondly, the idea that you might be able to alter the pH of your blood via diet is fairly wrong. The pH of our blood is finely regulated by the body, and a few decimal point changes in either direction has fairly significant metabolic implications for the body, resulting in physical illness.
After pointing these things out to this lady, she paused, looked reflective, and responded with “well, sometimes you have to forget about all your medical knowledge“…. enough said.
Cancer is scourge that brings out many positive intentions, and a lot of people mean well. However, misinformed good intentions are not very helpful, particularly when the stakes are life or death. A misinformed decision can easily lead to the worse of the two outcomes.
This is not usually the kind of post that I put up on my blog, but I have posted it for interests sake of the two articles, and to explain where my perspective with regards to chemotherapy treatment. I hope it helps.
Thanks for listening.
So yesterday marked the day of my first colonoscopy. To most people, the idea of a 2cm wide, 2 metre long piece of tubing going up the rear end would make them run for the hills… and admittedly, if you asked me a year ago, I would probably have responded in a similar fashion. However, as scary as it all seems, it really isn’t that bad!
The whole procedure took about 15-25 minutes, and interestingly, was done by a registrar, and supervised by a consultant, both of whom I had worked with when I did the gastro run at the beginning of last year. Luckily for me, I’m not one to care for awkwardness… also, it helps when the midazolam kicks in, it makes the anxieties float away…..
Long story short, the results were that 6 polyps were found and removed. These polyps are more than likely benign, although we wont know for sure until the histology comes back, which will hopefully be in a week or so. But, having seen a few colonoscopies myself, it looked not to bad down there. I was awake the entire procedure, although parts of it are a little hazy thanks to the midazolam. From a medical perspective, it was quite interesting to see the anastomosis where they terminal ileum joins the colon (formally at the cecum, and now at the transverse colon). I’m just glad my gut still works 90% of the time as it should.. 🙂
The next colonoscopy is likely to be in about 2 – 3 years, depending on what gastroenterologists think of the results.
I thought I would briefly explain what exactly the Internal Jugular vein is, and why I had problems with it.
The Internal Jugular Vein (IJV) is one of two major veins that drain the deoxygenated blood from the brain and head back down to the heart so that it can be sent to the lungs for oxygenation again. Each person has two IJV’s as well as two External Jugular Veins (EJV’s), and these are the main tributaries for blood to return to the heart from the neck upwards.
What happened with me was that my portacath, a tube that ran from my chest to the heart, makes it’s way to the heart by inserting in the IJV, then follows the IJV down where it joins the brachiocephallic (this vein drains the arm), which then joins the Superior Vena Cava, which then drains in the Right Atrium of the Heart. At the point of insertion into the IJV, this is where a clot started to build up. Clots generally can be caused by a number of things, but having foreign body in your blood vessel can be a cause, also, in my case, having cancer is also referred to a ‘pro thrombotic state’, as well as the chemo drugs I’m on [For the medical students: Capecitabine is pro-thrombotic, yet its dose-limiting side effect is thrombocytopenia.. any ideas?]. This all added up to a reasonable risk, one doctors and myself were willing to take, to causing a clot.
So the clot started, and once it starts, unless you take away the source of the clot, it will continue to grow. The major risks of having a clot there are mainly that fragments could break off, flow downstream and into the lungs, block off the lungs, which then stops me from oxygenating my blood and causing me to die from oxygen starvation. This is called a pulmonary embolism.
The portacath was removed with surgery to prevent the clot growing, and I was also placed on regular clexane injections in order to assist the prevention of further clot formation. The body will do the breaking down of the clot in its own good time.
And THAT is what last weeks drama was about! 🙂
I thought i would do a quick post giving a run down on the drugs that I’m currently on. The first on the list is the main event.
Capecitabine is the drug that i have to take 4 tablets (2gm) twice a day every 12 hours. This is a 5-flurouracil prodrug. The prodrug part means it gets metabolised into the active parts of the drug at the location of action, the idea being that it reduces the overall side effects. 5-FU is a DNA base analogue that gets incorporated into the DNA of rapidly dividing cells (namely the cancer cells) and then prevents them from dividing and growing further. This stuff is so toxic that 5 have to wash my hands after handling the the tablets.
Loperimide is the next drug in the lineup. This is essentially just an anti-diarrhoea drug, one of the main side-effects of Capecitabine.
Ondansatron is one of the best, and most expensive anti-emetics around, so much so that I can only get a script for this bad boy for no more than 6 a month.. so I have to use is sparingly……
Domperidone is another anti-emetic, that i take 2 tabs of 4 times a day, usually half an hour before each meal, then before bed.
Dexamethasone is a really really potent steroid, and will make me fat fast if I’m not careful. Its also a really really good anti-emetic, although its mechanism of action isn’t really known. They just know it works really well. This one is 2 tabs per day after breakfast.
And Finally, Paracetamol is just a good run-of-the-mill drug, it makes me sleep better at night, and helps with all the aches and pains the come with cramping all the time with the Capecitabine.
So there was a quick rundown on what Chemo involves. And don’t forget the 2 hour infusion of Oxaliplatin that I get at the beginning as well.