Last week I had my 25th CT scan and it was good news.
I haven’t had eyes on the scan yet myself, but basically it looks the same as the previous scan I had back in February. This means that the disease is stable, which is about the best we can hope for with Avastin, and it means the Avastin is working. So far I have had 89 rounds of chemotherapy total, 15 of which include Avastin, meaning I have spent close to $90,000 on my chemotherapy over the past 6 months.
The advice, since the Avastin is working, is that I should continue with it. It really begins to put into perspective what the impact of last years fundraising effort has had. At the time 60k seemed like a huge target that couldn’t be reached. As time has progressed, it has proved to be only the tip of the iceberg, and the money raised has enabled me to continue for a lot longer. At some point however, we will reach a point when the money runs out, and we will be left with the decision over whether to continue with treatment (in a debt based way), or to stop and let nature take it’s course. As regular readers of the this blog know, I’ve long since accepted the final outcome, so its not too much of a stretch for me to let nature take its course rather than to bankrupt family and friends with the ongoing ridiculous costs of my treatment, but that is a bridge we will cross when we get to it.
In other semi-related news, it would seem that I have developed a gastric ulcer over the past week, which means I missed my most recent scheduled round of chemotherapy. 5-FU is an agent that gives me mucositis along the entire length of the gastrointestinal tract, so the stomach not withstanding, has subsequently ulcerated. Avastin can also impair healing as well, so its likely the combo of the two has led to mucosal erosion and then impaired healing. I have since started on high dose Omeprazole (a Proton Pump Inhibitor) to help reduce the acidity of my stomach and therefore help with it’s healing. The last week has involved persistent nausea, epigastric pain and multiple episodes of vomiting at all hours of the day, so it has been a bit of a miserable time. I am scheduled for a gastroscopy this coming Wednesday to get a firmer diagnosis and to rule out other possibilities for my symptoms in the context metastatic disease.
Oh the joys of cancer… 🙂
Until next time…
Life can be interesting in how it provides opportunities that you may not have foreseen in your life when you were younger. Throughout medical school and before, I would never have envisaged that I would be playing the role of raising awareness about bowel cancer. Cancer in general was that disease that I treat, and the thing that ‘other’ people had to deal with. Being diagnosed at the age of 27 was a paradigm shift, a disease concept was all of a sudden a very real part of my life, one that I have had to live with ever since.
I have been an ambassador for Beat Bowel Cancer for three years now. Their goal as an organisation is to raise awareness of an unglamorous disease that is often underplayed and not widely known about. They are also advocates for bowel cancer related screening and treatment. An interesting point which for me validates the effort of this organisation is that when someone famous is diagnosed with breast or prostate cancer, we all know about it, but when it is bowel cancer, the media often just report it as ‘cancer’, a term that is nebulous and unhelpful. To me it typifies the aversion that we seem to have in talking about this particular disease. When you hear that bowel cancer kills more people than prostate and breast cancer combined, you realise the imbalance in our understanding of this. Hence, as an ambassador, I see it as my responsibility (given my diagnosis) to do what I can, while I can, in the hopes that it will save lives. As with any cancer, the earlier you catch it, the higher the likelihood of successful treatment. If we can raise awareness, implement a screening program, and have treatment options that are comparable to the rest of the developed world (don’t get me started on the availability of Avastin… ), we can make some serious headway into the mortality of this disease.
Last week, as part of the campaign to raise awareness, I was invited to be interviewed on Good Morning.
It should be noted that due to the way TVNZ on demand works, this link will only be available for another 13 days!! So it won’t be available come July. 😦
Until next time…
After a three month publication cycle has finished, I am now free to post the article that I wrote in the OHBaby! magazine for their Autumn Issue. What follows is the text from the article, and then a link to the PDF of the actual 5 page spread so that you can see the photos and the layout. The brief was along the idea of how to communicate family values to your children, with my particular circumstance adding a unique perspective on it.
Communicating and teaching your children your family values can be a challenge at the best of times; achieving this when you know it’s unlikely you will survive to your daughter’s first birthday seems next to impossible.
Five years ago, I was diagnosed with metastatic bowel cancer, and after surgery and chemotherapy, I relapsed and became terminal. My life trajectory seemed to be mapped out, shorter than anyone would ever hope for or expect. But, for reasons that remain a mystery to both me and the medical profession, I have continued to live, while knowing that at any moment, I am only a heartbeat away from finishing my journey in this life.
For my wife Hannah and I, the decision to have a child was complex; It was prompted by the desire to start a family and cautioned by the implications should we be successful. In the end, we knew we would never regret having a child but there was plenty of room for regret had we not even tried. It breaks my heart that bar the miraculous, I will miss most of my daughter’s childhood. I will not get to see her flourish as a person, and I will not be able to walk her down the aisle at her wedding. It is with that breaking heart that I will do my best to leave her a legacy of who I am. I may not be able to leave her with memories, but I can leave her with the values I embrace, so she can appreciate who her father is.
I cannot create a pithy saying or a three-word catch phrase to live by. Life, to me, seems far too complex to be abbreviated to such small word counts. Instead, I want to offer you a sense of identity, a sense of purpose, and an understanding of where you came from, so you can then determine where you will go. The world is your oyster, to make of it what you will. My hope is to give you the opportunity to be the best you can be.
Having said this, ultimately any principle or ideal must still be communicated in words or they remain in the realm of the ethereal, never having concrete relevance. To that end, here is an attempt to communicate to you what matters to your family – as words to live by, and hopefully words to die by.
What does the Lord require of you? To act justly and to love mercy and to walk humbly with your God” Micah 6:8.
As a family of faith, this verse expresses what matters most to us. Elise, we want to encourage you to live a life of mercy, justice and compassion. We want you to love others and to learn to put them first, especially those who are less fortunate than us. This is how you can make your mark on the world, by being part of the bigger picture of humanity, and this is how you can honour your loving God.
Read, learn and travel.
Read widely and never stop learning. Travel to both the developed and developing worlds. Ask questions, challenge the status quo, and discover that life in middle class New Zealand is only how the privileged 5% of the world lives. Your mum and I believe that with this privilege comes responsibility; to use our time, wealth and skills to help others. Our worldview, narrow or wide, is shaped by our upbringing and education. Reading, learning and travelling will broaden your horizons, develop an understanding of life and grow a respect for people of all faiths and ethnicities.
Pause, reflect, breathe.
Life will be busy but we should always take time to pause, to reflect, and to breathe; to look back on a journey past or ahead to a journey planned; to contemplate the complexities of politics or the simplicity of a plate of food. We hope you will learn to appreciate the small things, so you then can appreciate the larger things even more.
It’s okay to cry when you are sad, and rejoice when you are happy. Life will always be a contrasting kaleidoscope of experiences and emotions; taking time to drink them in gives perspective, wisdom, and an understanding of yourself and your place in this world.
Elise, I won’t be around to remind you to say please, thank you or sorry. Instead, I will try to leave a legacy that instils a sense of compassion and respect for others where pleasantries will naturally follow. I won’t always be able to comfort you when you’re sad, or reassure you when your confidence is low, but I hope you know that I will always be there for you, even when I am physically absent.
I hope that in knowing who your father was, you will be able to choose who you want to be…
As an addendum, I am aware I haven’t posted many updates lately, but will plan some catching up in the next few weeks. Also, for those who do subscribe to the OHBaby Magazine, Hannah has written an informative piece on neonatal screening in the winter edition that went on sale today. 🙂
Until next time…