In an effort to get some fresh air, kill time, and generally make me feel better, I got out of the house recently to try and capture a glimpse of winter with the camera.
This last round of chemotherapy has blurred into the previous 32. It was neither particularly bad, nor was it better than expected.. it fell somewhere in between. It would be fair to say that each round is progressively worse when compared to what chemo was like when I first started. I remember round 1, I was eating Eggs Benedict in a local cafe the day after my infusion, carrying my slow 5-FU infusion with me. The mere thought of doing something like that on a Saturday morning after chemo now just makes me want to vomit. Generally I just sleep most of Saturday.
I regularly get comments from people about how good I look for someone who is on chemo, I usually reply with ‘you should see me right after my infusion’. I’m quite a different person. If you look at photos of myself from 18 months ago, before all of this started, I have aged, and I look more tired. Chemo is definitely taking its toll.
There are two more rounds of chemotherapy before Hannah and I head to Peru for 4 weeks. That means 2 rounds of chemo will be missed…. except that I wont actually miss it. 🙂
Till next time…
The Collobar:8/10 project that I have been apart of over the last 18 months has more or less come to a halt. It was a great project to be apart of to force me to get out to take photos, especially amongst the business of day to day life, filled with work and chemotherapy. Hopefully, a few of us will get something up and running as a replacement to this. In the mean time, here is a photo taken recently of Hannah during a trip to Wellington. This was taken just outside of Te Papa, on a typical cold, grey windy Wellington day.
Shutter: 1/125, f/5, ISO 200, 17mm.
I have a job that confronts life, death, and everything in between.
I have a life that confronts living, dying, and the reality of being in the middle.
I have patients that have to confront their own mortality in order to find their life.
Currently I work on the Cardiothoracic ward at Auckland Hospital. We have people in of all ages, who have to go through what can only be described as major surgery, not without its risk, in order to squeeze more out of life. For some, they squeeze an extra 5 years; for others, the younger patients, they aim to squeeze another 50. Some are successful, and as I discovered in the first week of the job some make great progress, only to have their heart stop, and despite all efforts, not restart.
When life and death is so closely intertwined into day to day work, you can almost become desensitised to it. Death can become another statistic…
… and then I remember my diagnosis.
I remember that I am going to become that statistic. I remember that behind that statistic is a life. One lived (hopefully) well, and one that hopefully dies well.
Then I remember that we are all dying. Ten out of ten people will die, we just do it at different rates, we do it unpredictably. Whether it is being hit by a bus, or being diagnosed with cancer, or passing away in our sleep in the distant future, we are all heading in the same direction.
And then I realise that whilst I might be at risk to the desensitisation of death, and dying, what I have noticed is that others are desensitised to being alive. Somehow, the value of life has been forgotten, because medicine has been so good at hiding us from death.
Life for me has become a precious commodity, one which carries more value than any comparative analogy might offer. I know my life is short, but it is worth every second, and every breath; because they are breaths and seconds that I will never get to re-live. I have seen too many people who have become desensitised to life, those for whom money, apple products, ambition, or self interest retain more value than the breath they just took. Apple products are cool, but the breath I just took is what allows me to appreciate them; and the breath I just took has no value, but for the grace of God who gives it to me.
… and if I value my own breath so much, then it is a waste if it is not spent serving those who also breathe, otherwise i’m a self-serving fool.
It is in light of my mortality that the breath of life has found its value, it is the Love of Christ that gives me that breath.
It is when I breathe, slow, deliberately, filling my lungs, that life becomes the most amazing, the most colourful, and the most incredible journey. A journey that is not travelled with my own strength.
It is in part it the strength of family, friends, and especially Hannah, but primarily it is strength from Faith. Faith that there is something greater than me, faith that I am loved unconditionally, and faith in Christ that beyond this life lies a greater, more abundant life.
I might not find healing in this life, but through faith in Christ, I’m know I’m going to find it in the next…
.. and while I am alive I’m trying to not be desensitised to death, and even more-so, I’m trying not to be desensitised to life.
Thanks for listening.
Treatment options for myself are rapidly running thin, and the latest news subtracts rather than adds to the arsenal of potential regimes. I have finally got the results back on the K-ras testing that I had done on my resected cancer a month or two ago. The sample had to be sent to Australia for it to be done. The results show that my cancer is in fact the mutant variant of K-ras gene.
What this actually means is that the 3rd line option for treatment, which incidently isn’t funded by pharmac and would have cost 3000 dollars per round, Cetuximab, will not be an option. In the bowel cancer population, generally speaking, about 60% of patients have the wild-type variant (i.e. the naturally occurring gene) and 40% have the mutant variant. The mutant varient has been shown to not respond to Cetuximab. Cetuximab is a monoclonal antibody directed at the epidermal growth factor receptor (EGFR) and inhibits it. Monoclonal antibodies are some of the more recent attempts at finding drugs that specifically inhibit receptors known to play a key part in cancer development and cellular reproduction. On the whole, they show a lot of promise in helping extend survival rates. Although cetuximab hasn’t been shown to change outcome, it has been shown to extend survival for an average of a few months (over large population studies). Avastin, also known as Bevacizumab, is another similarly targeted drug (also not funded in NZ by Pharmac) that has shown a similar response. This one binds to the vascular endothelial growth factor receptor (VEGF), and exhibits a similar kind of response by inhibiting angiogenesis (the formation of new blood vessels that cancer requires to maintain it’s supply of oxygen).
Basically what this means is that the 3rd line option for treatment (what I might go to when my current regime fails), which was never funded anyway, is no longer an option. It also means that when this current regime fails, we are really playing the guessing game as to what might be useful next in the treatment of my cancer. This makes the future, and the treatment it might involve, a very big unknown. There are some interesting studies and possible options in the states at the moment, but they will have to be funded privately, and there is no guarantee that any of it will work.
So, I guess Hannah and I will cross the bridge of next line treatment when we get to it. In the mean time, I am continuing with FOLFIRI until a CT scan suggests that I should be doing otherwise.
Until next time…
The week has come and gone and I have had my 10-15 minutes of fame on various programmes all in the hope to raise a little bit more awareness for an illness that is slowly beating me. It has been great to get all the feedback from everyone, and a little surreal to see yourself on TV. The breakfast interview really only served to illustrate how much I slouch! 🙂
For those who missed the segments and would like to see them, I have listed them below. Today (friday) is round 32 chemotherapy so I will apologise in advance for those who have commented and for whom a reply is deserved as I am generally not too functional over the next few days. I will try to get to them in due course.
Breakfast Interview – This Breakfast Interview requires clicking on the 5th segment of the programme, and then scrolling towards the end. I was the final interview of the day. It pays to let it buffer a bit before you move the video to the end.
Once again, Thanks to all those who have commented and supported Hannah and myself over the past 2 1/2 years, lets hope that I might be blessed to get another 2 1/2 years of life, or maybe even more.
Along my meandering travels through cancer, its ups and downs and fortnightly nausea, a number of unexpected and sometimes surreal opportunities have come my way. Speaking to 4300 people at Easter was one of many things that have happened to me as a product of just sharing my story and being up front and honest about the journey Hannah and I are on.
To add to this unfolding saga of my life, I have recently become the ambassador for Beat Bowel Cancer Aotearoa. This is a
“nationwide, patient led organisation committed to reducing the impact of bowel cancer on our community through awareness, education and support.“
It is interesting to read the list of fellow ambassadors, the likes of Sir Paul Callaghan, Christopher Doig, Shane Jones MP, John Carter MP, Willie Lose, Fleur Sullivan, and at the bottom, Dr. Jared Noel. It is ironic that bowel cancer, the illness that has defined the last 2 1/2 years of my life, now leads me to such a list that might include the aforementioned names of people who have shared considerable success in their own lives, yet also have somehow been affected by the same disease.
Cancer doesn’t discriminate. An egalitarian principle that even humanity often struggles to achieve.
So, as the next week unfolds, you will find me on the flat (or curved if you are still in the era of CRT) screens in the corner of your room at the two following times.
1. Tomorrow Morning, Tuesday the 7th of June, TV1, on Breakfast with Petra and Corin at 0850hrs.
It would be nice to have a profile done on you for reasons other than your own journey towards the inevitable, but that is not the life I have found myself in. I am intrigued as to how this week will unfold.
Till next time…