I have been really bad at posting photos on my blog over the past year. This is in part due having less time to take photos, and in part not sharing the photos I have taken.
In order to break this drought, here a few shots from some recent time away at Waiheke Island.
As it happened, they seem to follow a heavy flora theme, which is often the consequence when shooting macro.
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..
Yesterday I sent an email to some of my work colleagues that have made significant contributions to my career over the past three years. The email is as follows:
I have addressed this email to those who have been instrumental in my medical care over the past few years, and those who have been instrumental in supporting me professionally as I have navigated the first three years of juggling my work as a Junior Doctor juxtaposed against my role as a patient.Most of you have probably read in the media about the latest developments in my health and my expectant fatherhood in January, but I wanted to personally inform you about where things are at, as well as extending my heartfelt gratitude for your contribution to my short lived career.Two weeks ago I made the incredibly difficult decision to take indefinite leave from my job. As you will likely be aware, I have had aggressive recurrence of disease in my liver between my two most recent CT scans (between which I had 25 fractions of 45 gray radiation to retroperitoneal disease). This has necessitated starting a new regime consisting of agents I have had previously (FOLFOX), and the not-publicly-available monoclonal antibody Bevacizumab. I have completed two rounds of this, and it has resulted in the almost inverse of my well:non-well time ratio.Previously on FOLFIRI, for which I completed 66 rounds, I usually found I had 5 days of downtime and 9 days of up time each fortnight. This has enabled me over the years to continue with my medical studies and graduate, and then to complete 3 years as a house officer. I now find that on this new regime my unwell time has extended to close to 8 days, with only 5-6 days of being well each fortnight. I have also found that during my well time, I do not have the same level of energy I once had. After much reflection, I realised that it wasn’t fair on my colleagues and my patients for me to keep working when my attendance was so infrequent, and I wasn’t able to give the 150% that the job deserves and that I want to give. It was a heart breaking decision as I had also been offered a General Surgical Registrar position starting this December, and this for me was the job I was born to do. I now feel that I have entered the next phase of my illness and only time and the next CT scan will reveal its exact course.I wanted to send this email because there have been many many people to whom I am so incredibly grateful for their contribution to either my medical care or my professional career. These people consist of surgeons who have operated on me, and those I have operated alongside; those who have treated me clinically; colleagues I have worked alongside; and referees that have helped enable me to be offered the job that ultimately I will never start. The journey over the past 5 years since my initial diagnosis has been difficult, but to be able to continue to study and then work in an area I am so passionate about has, I am certain, enabled me to survive longer that anyone could have predicted.There is no doubt I am a statistical outlier, and perhaps we will never know why, but my hope is that I might continue to be one. The decision to take indefinite leave rather than resigning was with the faint hope that maybe one day I might step back into the role of the Doctor, but all things being equal, I feel that I have likely treated my last patient.We are all dealt different cards in our lives, and I want to thank you all from the bottom of my heart as you have helped me play my hand the best way I know how.Humbly grateful,Jared.
The decision to stop working has been one of the hardest decisions of my life. For me my medical career wasn’t just a passion, it was a choice of vocation that goes to the core of who I am. It was a God-inspired decision to go to medical school, and I believe, a God-given strength to be able to finish, qualify and work whilst being treated with chemotherapy. What tipped the scale to stepping down was the realisation that as a patient, I would want a Doctor that could give more than I can currently give with my new treatment.
That realisation led me to tears….
This feels like the beginning of the end, the down hill slide to the bottom.
I will still persevere though, I will maintain my practicing certificate and I will reconsider this decision should the circumstance allow it. For now though, I need to focus on the next phase of my life. The next CT scan will help determine what that next phase will look like, but the one certainty that remains is chemotherapy and a probable slow deterioration in health.
The key thing for me is to do this well. All of us are eventually heading to the grave, and whilst I will be there sooner than most, I have the chance to make that journey the best it can be.
Until next time…
As I settle into the aftermath of the whirlwind of generosity expressed a few weeks ago, I still am at a loss to express my gratitude at both the number of people who donated and the amount that was given. It has facilitated the next step in my treatment, which has paradoxically left me feeling pretty miserable in amongst a real sense that other people, both those we know and don’t, are journeying with us and supporting us.
I always remembered my treatment from the first line therapy with oxaliplatin 5 years ago with disdain. It is a chemotherapy agent that takes sometime to recover from and I am still feeling the effects of it now one week on. On the day of the infusion, I actually felt really good. There was a sense that maybe this treatment wasn’t as bad as I remember it. On the second day I got hit with hiccups. A benign common occurrence can become a tormentor when you endure 8 hours of unrelenting hiccuping. You cannot sleep, your muscles and chest become sore, and you just exhaust yourself. Hiccups are largely a manifestation of nausea, and can result from irritation from the diaphragm as well. These hiccups won’t succumb to any remedy that I know of, and I have tried a lot, you just have to wait them out. When finally they relented, I was able to sleep.
My sleep was then interrupted by what seems to be the next of the side effects, this time from Avastin. Supposedly it can cause tumour pain, although I’m not entirely clear on the mechanism, and this was what would wake me at three in the morning. Fortunately it was able to be relieved with some potent pain relief, but the paroxysms did persist for a few days.
Finally, the biggest of the side effects I have had to battle with over the past week has been extreme fatigue. Its a sense where no matter how much sleep you get, you just don’t feel refreshed. This has been what has stopped me from getting back to work on Monday as I had planned, but hopefully tomorrow, two days later, I will be able to do so.
So all in all it has been a rough 7 days. I guess it was to be expected but that doesn’t make living through it any more pleasant. Fortunately I move on to the well phase now between cycles and resume normality as much as I can. I suspect the next few weeks of life will involve some significant decisions on my behalf with regards to work and planning exactly how Hannah and I want the next few months of our lives to play out.
Until next time…
How do I put into words something that cannot really ever truly be described…
The past 2 1/2 days has allowed us to witness to what has been the single biggest act of generosity we have ever seen…
There are no words that can adequately express our gratitude. The sheer scale of what has happened is far beyond our comprehension.
When our friend Anna set up the give-a-little page, we thought it would be months before we reached our target. It instead became a sprint to the finish taking only 7 hours from when it all started. The experience was the modern day equivalent of a telethon with the constant pressing of the refresh button, watching the numbers tick by. This was facilitated by the literally hundreds of shares on Facebook and Twitter, with friends of friends of friends keeping the momentum going. Once the target was reached, it became readily apparent that the giving was not slowing down.
100,000 in 30 hours….
140,000 in 52 hours….
The scale and rapidity of the charity clearly impressed a few people, with both the NZ Herald and the Dominion Post picking up the story. When the Herald interviewed me, I had no idea that it would literally be on the front page the next day. It is a testament to the goodwill and generosity that exists in our society, and to be honest, Hannah and I are completely overwhelmed. We are truly, truly lost for words.
It is with all of the above that Hannah and I feel we should state that we are no longer seeking to raise funds. We have been blessed incredibly, the seemingly daunting task of 60,000 for my treatment has been reached and exceeded. Not only will the treatment be covered, but the additional funds will go a long way to helping provide financial security when my income eventually stops and Hannah takes time off work to be a mother. We also appreciate that there are still people who genuinely want to give that have not yet had the opportunity, so we will continue to keep the give-a-little site running for now, but it is likely we will close it sometime in the next few weeks instead of the 3 months we initially set it to run for.
To our family, our friends, and those we don’t know. We will be forever grateful for what has happened in the past 48 hours. It has brought us to tears and left us without words. The reality of our situation unfortunately has not left us, and we will shortly jump back on this roller coaster that seems to have the highest highs and the lowest lows. Through your generosity I will start back on chemotherapy this Wednesday and Bevacizumab will be part of the regime. We hope and pray that it achieves that extra time that we so desperately want, that we might celebrate the creation of new life, before my own comes to its end.
May God bless you all as you have blessed us.
Until next time…
Over the past few days we have been overwhelmed by the phenomenal outpouring of support, prayers and generosity. There have been so many messages that it is physically not possible to acknowledge each one separately, so Hannah and I would like to take this opportunity to collectively thank everyone who has contacted us during this time.
One of the decisions we have had to make over these few days is whether or not to pursue including Bevacizumab in my chemo regime. Of course if it were funded by Pharmac, then it would automatically be included, but since it isn’t, there are financial implications and funding challenges that need to be addressed if we go down that path. One thing that has become clear is that there are a lot people who are willing to help us fund this, as realistically, we can’t fund it ourselves. I personally have always been a little reluctant to fund a drug that does not change outcome, I haven’t seen the point in spending large amounts of money if the final result is still the same. However, in light of our change in circumstances and expectant parenthood, the timing of that particular outcome has all of a sudden become important, and I find myself re-evaluating that stance. Surviving for as long as possible is not so much about me anymore as it is about Hannah and our unborn child. With all of that in mind, we have decided to try and raise the funds for Bevacizumab.
This isn’t a decision we make lightly, and in large part it is in response to the overwhelming generosity of offers to help make it happen. To a certain extent this involves swallowing a probable misplaced sense of principle of not wanting to ask people for financial support, particularly when the outcome doesn’t change. It is when I reverse the situation and consider what I would do for a friend in the same circumstances that I can be convinced.
To that end, we have allowed a friend to set up a page on givealittle.co.nz in order to raise funds for my treatment. We are appealing to those who are willing and to those who can afford such a generosity, and place no expectation on anyone for anything. Hannah and I are truly humbled by the longstanding support and generosity of our family, friends, colleagues and people who follow this blog, many of whom we have never met.
For those considering donating, I feel it is important you know what you are donating towards, so here are a few salient points:
- Bevacizumab (Avastin) is a monoclonal antibody that essentially inhibits angiogenesis, this means it stops tumours from creating their own blood vessels for ongoing nutrient and oxygen supply as they grow. The overall effect of this is a reduction in tumour growth. It is not a tumour killing agent, it is purely one that slows the growth down. This drug will serve to buy me time with Hannah and our daughter, nothing else.
- Hannah and I have spent this year saving money specifically in anticipation of the birth of our child and associated maternity leave. This was also anticipating the likelihood that my income could cease at some point. This isn’t enough to cover the drug costs and it’s need as originally intended still remains, particularly as my income is going to become less reliable.
- I am currently inquiring about cashing in my kiwisaver and superannuation under the “severe illness” clause. We can use this as contribution to the cost.
- I will have a CT scan 3 rounds into the treatment to establish response so that further money isn’t spent if it is proving to be a futile effort.
- The cost of the treatment for 10 rounds will be about 6,000 dollars per round, meaning a total of 60,000 dollars.
This is not a small amount.
It is with a humility of spirit that Hannah and I post this, and a gratitude that extends beyond dollar value, towards the good will and generosity that has touched us over the past few days.
Until next time….
This journey with cancer has really highlighted the joys and disappointments of what life can bring. More recently, the joys of Hannah’s pregnancy has dominated our life. Setting up the baby room, feeling the kicks of our daughter, and choosing her name has been such a great experience, one that has become even more amazing when juxtaposed against our circumstance and the finite lifespan I have….
I had a CT scan on Monday, and the results from that have devastated us….
I have rampant, multiple new metastatic disease all throughout my liver, almost too much to count. I have new disease in my mesentery and a new nodule in the right apex of my lung. It would seem the absence of chemotherapy combined with the systemic immunosuppression that radiotherapy can bring has permitted the cancer to grow unrestrained.
This is the moment we have been dreading for 5 years and have been lucky to escape until now.
This is where everything changes.
I have a lifespan measured in months.
Hannah and I are gutted, the realisation that cancer is winning is like having a knife hacked into the deepest part of our soul. It hurts in a way that words cannot describe, it leaves us gasping for air, wondering if this is actually real.
The disappointment is compounded by knowing we have a daughter waiting to meet us, and for the first time, doubt has been cast over whether or not I will make that meeting. This is aggressive cancer, doing its best to kill me, to rob our child of their father.
We are devastated…..
Over the past few days we have broken the news to family, friends, and work colleagues, and we are all left speechless. Initially I cried each time I explained the news. Telling it to others is harder than hearing it yourself, but now the tears have dried up and I have become numb to it, no doubt a psychological coping mechanism. We have to prepare ourselves now for the next steps.
The details are yet to be finalised, but the plan is to fire one more salvo. I am going to restart chemotherapy consisting of 5-fluoro uracil and Oxaliplatin. The hope is that we can establish some kind of response in my liver, enough to buy some time. We are currently considering whether or not to add Bevacizumab (Avastin), a monoclonal antibody, into a the mix. This wont change the outcome, but it may mean we get more time. The issue with this is that it is expensive and it isn’t funded by pharmac, I would have to go privately for it. Hannah and I are currently assessing our options to make it happen, because at the moment, time is the most valuable commodity I can buy. One, or even two months could make all the difference in meeting my daughter. Any time I have with her after her arrival is also worth the world to me.
I will keep you all updated on how things unfold this week, but there is no doubt that I have now reached the business end of my journey with cancer. Those who know me know that I have long since accepted my outcome here, now its all about timing that outcome the best way possible, for the sake of Hannah, and for the sake of a child I haven’t met, but love so much.
Until next time…