There are so many people to thank. Too many in fact. However just before I complete my last major surgery in my 1st line treatment journey I thought it was a good time to pause and thank a few key people.Read More
I've completed 1st line treatment and my next PET scan is booked for April 10th. I'd love to say I'm completely relaxed about it ready for any outcome but I'd be lying. I have major scanxiety.Read More
Completing my legacy video library was one of my 'non-cancer' projects so I felt the need to provide an update on my progress. However I've since been asked a couple of times for advice on how to set up these collections by other potentially terminal patients with kids, so I figured I'd turn this into more of a guide for others.Read More
So I'm getting a few worried texts and emails asking why I'm being so quiet. Really it's because I just don't think I've got anything interesting to say, but I realize that given my condition people tend to think I might be dead if I don't make any noise :) So here's just a short update...
- I have completed the 1st of 3 planned post-operative chemo cycles. Having the new port is great - so much better than having someone make 5 or 6 attempts at finding my veins. So far side effects have been minimal but it tends to be cumulative so fingers crossed for the next two cycles
- The plan is to complete these 3 cycles and then do a PET scan in late Feb / early March. That scan is a big deal because it will tell us whether there is any cancer left in me after the surgery and clean up chemo, and whether it's spread at all. Obviously those scan results will determine what happens next. Best case - I get a NED (No Evidence of Disease) result. Worst case cancer is not only still present, but has spread further.
- I will almost certainly do more chemo even if I get a NED result, just because of the bad pathology results.
- Surgeon plans to do the 'reversal' surgery (reconnecting my small and large intestines) when I finish chemo - whenever that is. I'll be glad to see the back of "the bag", though I'm pretty used to it now.
- I'm attending a week long residential program called Quest for Life in early February - basically a course to help folks with a bad medical diagnosis wrap their heads around it and adjust their lives accordingly. It happens to be in the Southern Highlands which is the area we're thinking about buying land, so I'm planning some reconnaissance too.
- I really want to spend the next few months before the 'big scan' doing something interesting / constructive. Toying with some ideas but open to suggestions too. Challenge is that I can't predict how I'll be feeling on any given day, so needs to be flexible. Will share my plans to commit myself :)
Hope everyone reading this is happy and healthy and settling in well to 2018.
Had post-surgery follow up meetings with surgeon and oncologist yesterday. I don't think we were prepared for them being so depressing. The pathology results are back and they weren't great (after surgery all the resected tissue - colon, liver and lymph nodes - was sent for testing).
The report is 7 pages long and there is a separate genetic screening report. I might do a separate post with the technical detail for those suffering from a similar diagnosis that I know are reading my blog...because I'm going need some advice on chemo and a few other points.
But here are the highlights:
- The good news
- The primary tumor (colon) showed a good response to the pre-surgery treatments.
- The surgery appears to have removed all tumors successfully.
- The bad news
- The primary tumor was treated with both radiation and chemo while the secondary tumors in the liver couldn't be treated with radiation, so we were relying on chemotherapy there. The pathology report showed that the liver tumors were barely impacted by the chemotherapy, which suggests that all of the pre-surgery treatment impact came from the radiation, not from chemotherapy. This is concerning because it suggests that my cancer is not responsive to the chemo drugs I was on (Oxaliplatin and Xeloda), despite being on an extremely high dosage. The reason this is so concerning is that we will be relying on chemotherapy to kill off any residual metastatic cancer cells. The next point makes this doubly concerning.
- They removed 37 lymph nodes in the surgery (that is a lot of nodes to remove - lets try not to think about the long term implications of that). Of these 9 were malignant. To put this in context, when they grade the severity of a cancer one measure they use is the number of impacted lymph nodes - 1 node, 2 nodes etc - but that scale stops at 7 i.e. anything more than 7 impacted nodes is considered in the worst category of spread. This, along with the liver metastasis, suggests I probably have a lot of cancer cells left in my body despite the actual tumors being removed. The original plan was to attack this with a second round of "clean up" chemo, but now everyone is questioning the efficacy of this and the concern is that it's just a matter of time before those 'wild' cancer cells find a new home and spark the growth of a new tumor, which may well turn out to be inoperable or untreatable, depending on where it is.
- The plan from here...
- My oncologist is considering adding another chemo drug to my cocktail (Avastin but Panitumumab or Cetuximab are also being discussed, however oncologist is concerned about side effects of the latter two). Previously he'd thought all I would need was another 3 month 'clean up' cycle on my existing cocktail, but now there is talk of 6 months of additional chemo.
- Because the veins in my arms have retreated due to the initial chemo cycles (and they weren't great to begin with), I need to have a port inserted.
- I also need a procedure to remove the caval filter which was inserted after my pulmonary embolisms to mitigate clotting risk during my major surgery.
- All this new shit starts in January, so I have around 10 days of "normal life" before then. I'm trying to think of something awesome to do in the next 10 days.
Given the relatively bad news from the pathology report I'm also reconsidering several alternative / complimentary treatment options that I'd previously parked pending the conclusion of first line treatment. I'm planning on getting a Curematch (USA) report done on my chemo options to augment my oncologist's own recommendations and I'm looking into the Care Oncology (London) complimentary drug regime. I'm also revisiting diet and supplements. Basically I'm doing whatever I can to stop this cancer spreading because suddenly chemo sounds like it's not going to be much help.
I'll probably have other PET CT scan in February / March to see whether the cancer is still present or, worse, spread post-surgery. Dreading that scan.
The shock of yesterday has also reminded me that I still have work to do on my track 2 planning, so that is part of what I'll be doing in the New Year, because suddenly the odds of track 2 being our reality seem a little firmer. I had been starting to think about a plan to return to normal life - work etc - but now I just don't know how think about this again given all the additional treatment and the associated uncertainty.
Cancer is a bastard.
Ok, so the major surgery is behind me. One liver resection. One colon resection. One pelvic dissection. I have a scar that runs all the way from my breast bone to my pubic bone. It's definitely a relief to have it done and all three of my surgeons seemed pretty happy with the way it went. I'll know more once all the pathology comes back. I spent 11 days in hospital. It was on track to be a shorter stay but then I took a bit of a bad turn which then took a while to get over. I got home last week but sadly I'm back in hospital now due to some complications. Oh it has been such a fun week, I have to share, as usual probably too much...
Just a couple of days after getting home I started to notice some pain when I finished peeing. It got bad enough that I called the hospital after a couple of days and based on my symptoms (and a prior positive urine culture) it was determined that I probably had a urinary tract infection - pretty common after a hospital stay with a catheter. So I went onto some antibiotics and was told it should start to clear up within 48 hours. After another 3 days the pain was only getting worse and I was getting less and less pee out every time I visited the toilet. The hospital asked me to come back in for one night so they could run some tests - blood, urine etc. They were concerned that I might have an infection that could get out of control or that it might be otherwise affecting my recovery from the surgery. All the blood work looked good so I was discharged the next day but put on an additional antibiotic and the dosage of my other one increased. The plan was to wait for the result of a new urine culture to confirm exactly what the infection was. I went home on Saturday morning and we expected the result on the Monday.
Over the weekend the peeing pain just got worse and worse despite all the powerful antibiotics. To be clear, it was so damn painful to pee that I would get nervous when I felt the need coming on. My routine was to sit down for the 1st part of the pee which was generally less painful. Then for the second half, which was always much more painful I'd stand up and put one foot on the toilet bowl - because for some reason this provided some relief and because standing made it easy to breathe through the pain and brace myself. I joked to some friends that if anyone walked in on me in the bathroom I would have looked hilarious - one leg up and heavy breathing.
On Monday the culture results came back and they were negative i.e. I had no infection. Cultures aren't 100% reliable but the result showed my white cells were also totally inconsistent with infection. I was also getting desperate. The pain was persisting between pees now such that it was painful to even walk and it had got so bad that I actually wasn't able to pass urine anymore...at all. While I'd been in hospital my liver surgeon had introduced me to the head of urology "just in case" and he'd suggested that if the infection treatment didn't resolve my issue I should give him a call. So I set up an appointment for the next day and took a load of painkillers to get me through that night.
When I went in for the appointment on Tuesday I was very, very sore. The urology specialist did an ultrasound bladder scan and found a large volume of liquid. The conclusion was that for whatever reason - perhaps nerve damage from the surgery - I was unable to pass enough urine and the retention was causing the pain. They decided I urgently needed a catheter. I've never had a catheter inserted while I'm awake and I hope I never have to do it again. Having anesthetic jelly injected into your penis, and then a tube pushed down your penis into your bladder is not a joyous experience.
And then something strange happened. They were expecting a rush of urine to flow into the catheter but instead hardly anything came out. The new theory was that something else outside my bladder was causing the problem, but for that I'd need more testing. So...cue another hospital admission, more blood tests and yet another CT scan.
The CT scan revealed that I had a large fluid "collection" sitting right next to my bladder and it had grown to the point that so much pressure was being applied to my bladder that I could no longer use it. The ultrasound bladder scan was fooled and was actually picking up the liquid content of the "collection" and not my bladder. The only solution was to drain this fluid. A couple of hours later I'm prepped for surgery and rolled down to theater. I ask why we passed through the anesthetic bay straight into the theatre and the nurse tells me I'll only have light sedation for the procedure - a procedure where they stick a large wire into your abdomen and then a tube to suck out the fluid. Given my fear off all things medical and needles this causes me a mild panic attack but at this point the pain is so bad I'm willing to accept anything that will make it go away. So I lie back and think of Christmas. Luckily it turns out sedation with Fentanyl is pretty damn good and I barely remember the whole thing happening.
The impact was immediate. They removed about 200ml of fluid, which turned out to be blood (technically making this "collection" a hematoma), and the pressure reduction allowed me to pee normally and with much less pain almost right away. I've been sitting in hospital for the 48 hours with a drain to remove more of this fluid but that was removed this morning and I'm hoping that I'll be discharged later today. There is no guarantee that the hematoma won't just grow again and require drainage again, but my doctors think this is unlikely. Fingers crossed, but at least now we know what the problem is.
Next week I meet the oncologist to get my plan for the next rounds of chemo. I'm hoping I get a bit more of a break before it starts because the thought of starting chemo again right now fills me with dread. But such is the cancer game that we must play :)
So this will be my last post before the big Surgery tomorrow (Nov 23). Over the weekend I caught up with lots of friends (thanks to everyone who made it to our Thanksgiving BBQ) and the occasion reminded me of one question that I keep being asked: "why you?" i.e. why did you get stage 4 colon cancer at the age of 35.
Good question, and obviously it's a question I've been thinking a lot about since I was diagnosed. It's the first question I asked my doctors when I met them and their response has been pretty consistent. They have all told me to just not think about it. Here's why. In some cases the cause of cancer is pretty obvious e.g lung cancer often (but definitely not always) caused by smoking, Mesothelioma generally traced back to asbestos exposure etc. However in most cases it's impossible to know. Modern medicine knows there are risk factors for certain cancers - genetics, obesity, diet etc - but it's generally impossible for a doctor to answer the "why you" question with any degree of precision.
Despite the lack of a clear cut medical response, there is a natural desire to keep pushing for an answer to this question. For one thing, I really want to know how I can stop the cancer coming back if I'm lucky enough to survive this initial onslaught. So for this reason I've kept reading and I kept asking.
Here are a few of my "findings" on the "risk factors":
- Obesity - Now anyone that knows me knows that I've been, ummm, a little on the heavy side from time to time. Over the last 4 years or so I've been particularly bad. I had the whole dad body thing going on. A combination of kids at home and too many hours at work limiting free exercise time, working at Google (3 ridiculously good free hot meals a day), and exposure to "American eating" for 4 years (portion sizes, sugar in everything etc) all combined to lift me to my heaviest weight ever. So naturally, when I was diagnosed I thought my weight might be the cause. My doctors said this was unlikely. They felt I wasn't "obese" by the standard that would be a disease factor, and my weight hadn't been an issue for an extended period. Nonetheless, I personally feel being overweight must have been a factor and this has been a wake up call for me. No more excuses for being even a little overweight. Luckily cancer treatment is the ultimate weight loss program (at least for me). I'm down 12kg already and expect to lose quite a lot more post-surgery.
- Diet - There is also the question of what you eat, but here again I don't seem to have a high risk factor. Do I eat some unhealthy stuff ? Sure ! I live for the perfect pain aux raisin (I can share my judging criteria for this wonderful class of pastry if anyone is interested). However I'm also a man who makes his own muesli (Granola for you American folk) and compared to the average family we eat pretty healthy (organic where possible, minimal red & processed meat etc). But here again Cancer has been a wake up call to do even more and so we've moved increasingly to a plant-based diet complimented by fish and even less red meat.
- Stress - This is something I've reflected on quite a bit. I never considered myself "stressed", probably because my reference point is the stereotypical borderline suicidal overworked Wall Street executive, and by that measure I'm doing just fine. However in hindsight I realize I have been pretty stressed. When I first arrived in the US my role at Google was, ahhh, challenging. I walked into a total mess with a lot of important people applying pressure for quick resolution and no clear path forward. For about 6 months I was extremely stressed. In addition to that specific period I have a general on-going issue with imposter syndrome, which is heightened at Google where you're surrounded by A-type folk who seemingly all went to Harvard or Oxford - this means I operate with a higher than average baseline stress level. So, who knows what role this all played, but again I now know I need to manage stress extremely carefully and this is something I'm thinking a lot about when I contemplate my return to work.
- Environmental exposures - I've done a lot of reading recently about how modern post World War II society has contaminated almost every aspect of our lives with chemicals - our food, our homes, our furniture, our water, cosmetics, cleaning products etc. Frankly, the more I learn the more horrified I am by what governments have permitted private industrial companies to pump into our food in particular. I think in the future, as medicine learns more about cancer, epidemiologists will almost certainly confirm a link between the alarming growth in the incidence of cancer and the tide of chemicals we've introduced into our lives. However until then this is another dead end in the search for a clear answer to the cause of my diagnosis. Nonetheless I plan to be much more vigilant about the products we allow into our home, and the products we use to build our next home.
- Genetics - There is a ton of research happening in this space. I have no family history of this cancer but based on a 23andme DNA report I did several years ago (before 23andme were banned by the FDA from providing health risk reports), I do have a slightly higher genetic risk for colorectal cancer. After my surgery tomorrow my tumors will undergo a lot more genetic testing for what are called 'biomarkers'. There is a chance that they'll discover that I have something like Lynch Syndrome (I really hope not because this would be significant for my kids), but until then I have no reason to think my genes are the direct cause of me getting this cancer so early in my life.
In addition to these very well established risk factors, not a week goes by where I don't read about another potential cause of cancer being unearthed by some "study". Here's just a sample:
- Personality type - There is a whole body of research on 'Type C' personalities, essentially personality types that are cancer prone. I've reviewed some of this literature and it's a bit like reading a horoscope in that I think anyone could relate to some of the traits researchers have linked to increased cancer risk.
- Tattoos - I have a tattoo so this one got my attention. A study has suggested a possible link between tattoo ink and cancer later in life. Who knows but seems like a long-shot, at least in my case.
- Processed meat - This one seems pretty well confirmed now.
Incidentally, if anyone is interested in the latest information on cancer causes and how you can prevent cancer (including recommends for specific cancers) I think the best evidence-based resource is the American Institute for Cancer Research.
One final thing I should mention is that there is an alarming increase in the number of younger people presenting with late stage colorectal cancers, enough to be causing serious concern in US medical circles. I suspect Australia and New Zealand will follow soon given their very similar rates of this cancer. Both the Washington Post and the New York Times have written about this recently. It's a bit of a mystery. I've joked that in 5 years they'll probably discover that eating a particular type of biscuit or drinking a particular beer was the cause - you know, something horrifyingly specific and avoidable. But in reality that's highly unlikely, it seems nothing is ever that clear cut in the world of cancer.
Wow. This cancer business brings plenty of surprises. Today we had a session with the surgeon (well, one of the three) to be properly briefed on the surgery next week. I'd been thinking of this as a formality as we already knew the basic outline of the surgery plan. Instead there were a few curveballs which came as a bit of a surprise. This surgeon is a kind soul and said we just couldn't have had this conversation earlier i.e. I needed to be eased into it, and perhaps too much time to ruminate on it might not have been a good thing.
So, here are the highlights, with all my usual frankness:
- It won't be a laparoscopic (key hole) surgery after-all. They've decided they need "full access" to do what they need to do. So it's a conventional open surgery. Guess the upside is a much more impressive scar ???
- Because of the position of my tumour and the collateral tissue damage caused by the radiotherapy this will be an "ultra low anterior resection" surgery. In lay terms they need to take not only a chunk of my colon but also a chunk of my rectum. Sorry, if you're like me the word rectum just makes me squirm. This makes me a prime candidate for "Low Anterior Resection Syndrome" (LARS). The implications of LARS can range from a little bowel irritation to total fecal incontinence. Mmmm, yes. I'm sure there is a great joke here but right now it's way too soon.
- I will need a temporary ileostomy (a poo bag with a direct entry to my abdomen) for 3 months and then another surgery to reverse this...and use my new man-made rectum instead ;)
- And, perhaps the biggest surprise to me today, because the cancer has spread to the lymph nodes on my left side they are basically going to evacuate my pelvis on the left side - removing the whole lymphatic system and the left side nerves that control urinary and sexual function. Apparently everything can theoretically function with just the nerves on the right side but I've been told to prepare myself for some degree of post operative dysfunction.
- The surgery will probably take 5-6 hours just for the colorectal component and several hours more if they do the liver. We discovered today that it's highly likely they won't do the liver resection in the same surgery, which I'd previously thought had been decided. Apparently this will need to be decided on the day based on: (1) how well my body copes with the colorectal surgery and (2) logistical coordination with the liver surgeon.
- Oh, and I was told today that the skinnier I am the better it is for the surgeons. I've already dropped 12 kilos but now there is a fasting race to loose another 5kg before next Thursday.
I kind of knew some of this already but some of the new details, combined with having it all laid out bare, left me more than a little shell shocked to be honest. In my surgeon's own words, "life will not be the same after this". That hadn't really sunk in until today. Suddenly I feel like a total idiot for complaining about radiation and chemo side effects. They now seem pretty inconsequential relative to the lasting impact of this surgery.
I'm also seriously thinking about life with LARS. It's impossible to know how badly I'll be affected until it's all done. I might be lucky, but I'm wondering if I should just ask for a permanent colostomy bag and forgo (1) the additional reversal surgery and (2) all the potential quality of life implications. Will think about this over the next few days.
One additional update, after a session with the oncologist yesterday, is that I'll have a 2 week break after the surgery and then they want me back on chemo for another 4 cycles, which translates to around 3 months. Good news is that if all goes well with the surgery i.e. they get all the cancer out, there is no plan for "maintenance chemo" (some stage 4 folks are basically on chemo for life).
Heavy stuff, and sorry if I'm way over-sharing. I think being open about the full extent of this is healthy for everyone, and it's certainly helpful in a cathartic sort of way for me.
Today, more than any other so far, I'm wondering what life is going to be like after all this...if I get the 'all clear'. It's suddenly hit me that it really isn't going to be the same. I just don't know to what extent. Am I going to be capable of my old job at Google ? Will I be able to go camping with the kids ? Can I swim at the beach ? I'm sure the answer to all these questions is 'yes', but now I know there will definitely be a new set of limitations in life, and I guess that's a little scary. But hey, I have no choice if I want to live, which kind of makes this easier :)
So, wow, it’s been an interesting week.
Over the weekend I started to notice a niggling chest pain - nothing major, just a little spasm when I rolled over in bed. I had my MRI progress scan on Monday morning and the pain was enough to cause me some issues holding my breath during the MRI (more on those results later) - but still nothing I'd call alarming.
After MRI I came home and got right into the bath (because so far in my treatment a hot bath has been a magical cure, or at least a great calming agent, for many of my ailments). I sat in that bath for 8 hours because every time the water cooled down my chest hurt a little bit more. When Madé checked on me in the evening she threatened to call an ambulance - maybe it was the combination of shallow breathing...and needing hot water to not be in real pain. I resisted going but she may well have saved my life by forcing me - like literally (I was proposing to sleep in the bath that night).
I should say that at this point I REALLY didn’t want to go to emergency, partly because of all the tests I knew they’d run (i.e needles) but mainly because I’d convinced myself that what I was experiencing was because my lungs were full of cancer and we were going to rock up at ER and they were going to tell me it’s all over.
Anyway...we we drove to the nearest ER (San - local private hospital). Despite saying it wouldn't be a problem I couldn't even walk from the car to the entrance - Madé had to wheelchair me in. To cut a long story short (bloodwork, X-Rays, CTs etc) it turned out I have two clots - one in each lung. Otherwise known as pulmonary embolisms. I’m told people die from these regularly. Apparently having Cancer makes you high risk for these because Cancer actually makes your blood clot more. Who knew Cancer came with all these "add on" benefits ? I’d also been fairly immobile a couple of weeks prior because of my chemo side effect feet issue (burning so much I couldn't walk - you should see how gross it looks now) and not moving much can also spur clots - hence the inflight warnings to passengers.
Next day I was transferred to Macquarie - my primary treatment hospital - by ambulance (kind of embarrassing but they needed to be able to deliver pain killers because at that point it was so painful to breath) ….and I’ve been there ever since, and I’m not sure how long I’ll be here for.
They are injecting me twice daily in my stomach with a powerful blood thinner (oh and I have to learn to inject this myself before I can leave as I’ll need to do this for several months - I have no f@^#n idea how I’m going to do this). It gets better. While this shouldn’t affect my surgery dates I’ll probably need to have a “filter” installed in my Vena Cava - the main vein linking your torso to you lower body, to catch any other clots during surgery as a precaution, because obviously you can’t be on blood thinners when you’re operated on. Apparently it looks like a Shuttlecock, and I have to be awake during the procedure to place it. Yes...I am crapping myself about this. My lungs are also both partially collapsed - just a small area at the bottom - but this is high risk for infection so I’m on IV antibiotics (took them 5 goes to get that needle in a couple of hours ago).
I’ve also learned a bit more about my liver surgery. Sounding more likely that this will be separate to the colon surgery in November and will be open, not laparoscopic like the planned colon surgery (although there is still a scenario where that might change too). They need to make a large incision to actually turn the liver over so they can get at one of the two tumours which is more internal to the liver and in an awkward position - the other one is pretty accessible and could have been done laparoscopically if it was the only one.
So yeah, it’s been a tough week and it’s not quite over yet. My room in the ward also happens to be a few doors away from a woman in her final hours / days of life and no matter how hard I try, I can’t tune out of all conservations between relatives happening loudly and passionately in the corridor (although some interesting insights for my own Track 2 planning).
One piece of positive news is that my primary and secondary tumors appear to be responding to the radiation and chemotherapy. Long story but the official report from the scan on Monday still isn’t out but all my surgeons have looked at the images and tell me it looks good. So, woohooo, on one important front - although again, the OFFICIAL report isn't done yet.
It still seems so totally surreal that this is all happening to me. From the guy that was almost never sick (and had no major illnesses ever), I’ve become a walking list of numerous co-morbidities (the medical term used to describe all the things you’re suffering from that could potentially kill you). When I used to fill out medical waiting room forms I just used to skim all the "do you have a history of..." questions and tick no on absolutely everything. Now I have to read them very carefully because much of the stuff on the list applies to me, all in the space of 3 months !
On the logistical front I still get a lot of pings on FB messenger & Hangouts, emails etc etc asking me for the latest news and I think it’s because I’m not a very prolific blog poster (it takes some effort which I don’t always have the energy for, or I just can't think of enough to fill a whole blog post). That means friends and family are in the dark. So, I’m caving and setting up a private, moderated FB group - only for people I know i.e. friends, family, colleagues - where it will be easier to post small updates from my mobile etc. When I do have something chunky to say I’ll continue to post it on my blog.
So I'm realizing that if I don't post anything for a while I start to get a lot of "what's up" emails. Thanks for caring so much friends and family and apologies for being incommunicado!
The last several weeks have been a little rough frankly. I picked up a virus from the kids which knocked me pretty badly. At one point fever took my temp above the magic 38 degrees but I ignored doctors orders and stayed away from ER after my last bad ER experience. Luckily the fever passed by itself. Then the hand / foot syndrome got worse, but to a whole new level. I could barely walk on my feet or open a bottle with my hands.
Bright spot was our holiday at Hyams Beach, we splashed out a little on an amazing house right on the beach (because I can't get very far from the house at the moment).
Had a another tricky chemo infusion a couple of days ago after getting back from our Hyams Beach Holiday. Took four attempts for them to find a vein they could use. Luckily I managed not to pass out this time.
I guess the big development was meeting with my colon surgeon yesterday - Prof John Cartmill. Generally Madé and I found the meeting to be a major downer. I think we'd not grasped the enormity of the surgery. We discussed long term implications - I'm still too scared to Google "Anterior Resection Syndrome" - and all the variables still at play (for example the real possibility that cancer has leached further into my tissue beyond the bowel), which for me served as a reality check on my odds of surviving this thing and reminded me to stay focussed on my Track 2 preparations.
Anyway, key tactical developments:
- CT scan scheduled for Monday 24th to check for growth / shrinkage of tumors after chemo and radiation (very scared about this)
- Surgery planning procedure under general anesthetic booked for November 9th (happens to be Madés birthday and day after dad's birthday which is really shit)
- Big surgery pencilled in for November 23rd but subject to change based on information gathered from scan, planning procedure etc.
Meeting the liver surgeon next week because they are still deciding whether they operate on both my liver and colon in one marathon surgery, or do them separately. I hoping for the all-in-one option to get it all done in one surgery.
I should also warn folks that I've agreed to lend my story to media for the upcoming vote on the Assisted Dying legislation in New South Wales. This absolutely doesn't mean I'm giving up and I'm already planning my death. I just believe very strongly in what this legislation will mean for thousands of people who find themselves in horrific end of life situations and if I can lend my voice to that cause, for what's in worth, I think I should do it. FYI the Victorian legislation passed the 1st vote last night - 47 votes to 39. Fingers crossed for NSW in November but given our very Conservative government it's likely to be a much closer vote.
Everyone has had different exposure to death. Some have seen it up close - a family member, a friend. Some have not, yet, but inevitably will. For some the experience is peaceful and assuring. For some it's awful & traumatic. Talking to my friends, and certainly within my family, I know that at the very least all of us have seen a death scenario where we turn to the person next to us - spouse, parent, child - and say "please don't ever let that happen to me". This is normally when the death is slow, degenerative, painful and generally the result of disease.
While there is a lot of attention in Australia now on the same-sex marriage postal survey, there are two other state-level legislative reforms that will arguably impact far more people. Both New South Wales and Victoria have introduced Bills on assisted dying. Similar to the same-sex marriage issue, despite an overwhelming majority of ordinary Australian's supporting this (73%) and support from a majority of doctors and nurses, it's highly likely that stupid politics - a combinating of ill informed politicians and an active political campaign by the Catholic Church hierarchy - might prevent this change from happening.
What is being proposed in NSW
[Note - I'm writing about the NSW Bill because that's my home state but the Victorian Bill is very similar]
You will probably be surprised by how narrow the legislation is. It is a very conservative Bill, quite different to the voluntary euthanasia legislation that you see in some Scandanavian countries for example.
The Bill establishes a right for certain terminally ill persons to request and receive assistance to end their lives voluntarily. To be eligible to request and receive assistance from a medical practitioner, a patient must:
- Be at least 25 years of age and ordinarily resident in New South Wales,
- Be suffering from a terminal illness which in reasonable medical judgement will result in the death of the patient within 12 months, and
- Be experiencing severe pain, suffering or physical incapacity to an extent deemed unacceptable to the patient.
The patient must be provided information by their primary medical practitioner relating to the medical treatment, including palliative care, counselling and psychiatric support and measures for keeping the patient alive, that might be available to the patient.
In order to receive assistance, eligible patients must be assessed by:
- A primary medical practitioner,
- A secondary medical practitioner (who must be a specialist), and
- An independent qualified psychiatrist or psychologist (to confirm the patient is of sound mind, has decision-making capacity, and is making their decision freely and voluntarily and after due consideration).
Patients may self-administer, or be assisted by their medical practitioners or a nominated person to administer, a lethal substance (as prescribed by regulations) to end their lives, after having gone through the required process outlined in the Bill. This includes a cooling off period of 48 hours elapsing between the completion of the certificate of request and the provision of assistance.
The Bill provides for a right for persons or health care providers to conscientiously object to being involved in the provision of assistance, and no criminal or civil liability will be incurred by protected people who act in good faith who participate in the provision of assistance or refuse to participate in the provision of assistance.
Why I am passionate this
I've been a big supportor of legislation like this long before I was told I have a 50/50 chance of surving my recent cancer diagnosis, but obviously that news has made this much more personal. I hope I don't ever need to use a legal mechanism like this, but I can tell you that knowing it's an option would help quell some of my greatest "worst case scenario" fears.
Conversative politicians and the Catholic Church have a bunch of counter arguments. I don't want to explore all their claims but 'Dying with Dignity NSW' has a great myth buster document here. Most of the arguments center on the risk to vulnerable people. They worry that people will feel compelled to use this law because of their sense of being a burden, or because they are being pushed by family. I think this takes a very dim view of humanity but more importantly it completely ignores the bigger and more urgent problem - the experience of the many people today dying under truly horrific circumstances, or committing suicide themselves to avoid those circumstances.
To be fair, I should mention that not everyone in the Catholic Church is against this change. A 2012 Newspoll survey showed that 88% of Anglicans and 77% of Catholics agreed that a doctor should be allowed to meet a request from a hopelessly ill patient for help to die.
The bill is largely modelled on similar legislation that was introduced in the US state of Oregan over 20 years ago, and more recently adopted in 5 other US states (including California) and Washington DC. The track record of that US legislation proves that many of the scare tactic arguments being used by opponents of change in NSW and VIC are unfounded. What I found most interesting is that in Oregan a very small % of people actually end up taking the lethal drug, even after they get approval and instead die without it, but many found great comfort in knowing the option was available to them.
This is not a sure thing, especially in NSW
I've been horried to see that already the leader of the opposition in NSW, Luke Foley and the Premier, Gladys Berejiklian, have said they won't be supporting the bill.
See a reaction to Luke Foley's tweet from a terminally ill woman here.
The legislation has been introduced in both NSW and the VIC. The difference is that in VIC it is a government sponsorered Bill while in NSW it's a cross party working group that have introduced the Bill in the Upper House. The Victorian Parliament will vote on the legislation in October, while the NSW Upper House will 1st vote on it in November. It has to clear the Upper House before moving to Lower House MP's for vote.
What can you do ?
[Note -Again I'm focussing on NSW because it's my home state but if you're in Victoria check out Dying with Dignity Victoria]
- Share far and wide via social media - but please do it in a way encourages the real world actions below.
- Email, or better yet, write an actual letter to the NSW Upper House representatives. The more the better. Personally I'm writing to all and trying to schedule meetings with those who I think are likely to vote against. Here is a contact list for all Upper House MPS. Here is a great letter writing guide.
- Get in touch with your local MP. Write to them (contact details here) or better yet, try and get a meeting to discuss it with them.
- Many MP's are currently surveying their electorates on this issue. If your MP has a survey please be sure to complete it, or if they don't contact them and ask why.
We know for a fact that a vast majority of people want this change. The only reason it won't happen is (a) ill-informed politicians or (b) politicians hi-jacked by interest groups. We need these politicians to know that we are watching and they are going to be held accountable for their votes.
I have a lot of friends in media, business and government. If anyone has special expertise or extra 'leverage' of any kind, please consider bringing it to bear for this very important issue. Get creative. Just please take some kind of action.
The next time a loved one turns to you and says "please don't ever let that happen to me", you might take some comfort in knowing there will actually be a legal mechanism that allows you to do something real.
It's 3.30am here but I can't sleep for two reasons: (1) There is a possum on my roof making a lot of noise - yes California friends, you have raccoons, we have possums; and (2) I feel pretty good for the 1st time in 2 weeks and feel the urge to channel it. This is strange actually because I had a chemo infusion yesterday (no fainting but dang it was painful - Oxyplatin). Is it possible my body is developing a chemo addiction and I actually feel better after getting it ?
By feeling good I mean I no longer feel like there is an angry mole in my large intestine trying to burrow out. And I don't feel like I'm pushing a tennis ball - okay, I'm exaggerating, let's say a good sized plum - up my bum everytime I sit down. And I'm no longer walking on hot coals. Haven't taken my strong painkillers (I've been initiated in the world of oxycodone) since the weekend.
As an aside, I get asked a lot by doctors and nurses to "decribe the pain / sensation". I often find this extremely difficult but I've found it's a whole new creative outlet. "Agry borrowing mole" was my Tenesmus analogy. "How I imagine feeling post coital if visited in my sleep by a friendly, gentle gay angel" was my off the cuff description when asked by a doctor how I felt after my colonoscopy (the reaction made me take a mental note to rein myself in when talking to doctors...but I've found nurses love it). Plum - you guessed it, you see these are good analogies - hemorroids, a show I won't be buying tickets for again anytime soon if I can avoid it. "Walking on hot coals" - that's hand / foot syndrome.
So yes, it's going to be a good day, and although it's school holidays the girls have an all day play date (I love you Nina & Simon).
Here's my agenda for today just to give you a sense of my exciting life at the moment. Sometime soon I'll write about my cancer spreadsheet - essentially my track 1 / track 2 project plan. You know, I used to use the term 'anal' a lot, in the context of being 'annally retentive'. For example, I was about to write that those who know me well know that I'm extremely anal when it comes to having a plan. However after being diagnosed with colon cancer I've found there are whole sections of my lexicon that need revision. For example if I said that I'm annally retentive now in the wrong place and the wrong time, there are people who might actually think I'm retaining something in my anus.
Anyway, to-do list for today:
- Finish will and get it back to lawyer
- Start video library for kids
- Confirm air conditioning install for house (I'm finally giving up - Sydney is just too hot)
- Progress book projects for dad
- Holiday planning (we've booked a pre-surgery week long holiday on the South Coast from Oct 9th. Also serves as advance celebration of dad's 70th and Madé and my 36th's. Very excited. The scrooge in me would never normally rent a house like this, but hey, you only live once...and you don't know for how long). I was originally thinking Bali or Thailand but a doctor pointed out that I won't get travel insurance if I have any treatment related issues - so we're staying close to home.
- Confirm cooking course (we're moving to a plant based died, so signed up for an Indian vegetarian course).
- Think about land plan (this remains our biggest open question post diagnosis)
Enjoy your days all !
Apologies for the radio silence. I've recieved a bunch of check-in emails & texts asking "what's up" (thank you all for the concern) so figured I should post a quick update. I'm doing it from bed, such has been the state of things in the last two weeks.
Here is a super quick, very honest (once again, there is nothing sexy about colon cancer) run down.
- An ER visit - I'd been told to take any chest pain very seriously because apparently folks with tumours like mind can develop blood clots. To cut a long story short I had chest pain in the early hours of the morning (which I've never had before) which were bad enough to make me go to ER. When we arrived it turned out I was also running a slight temparature, which is code red for someone on chemo. I really regret going because I now know that a side effect of my treatment can be some upper gastic system irritation - kind of like reflux (which I've also never had before). In hindsight, that is probably what this was. The hospital however had to be thorough so I did every test under the sun over several hours - ECG, chest X-ray, and a blood test that left my right arm pretty bruised. Good news was that they said if I hadn't told them I was on chemo they wouldn't have known because my blood results looked like a normal healthy person - so good immune function.
- Bad chemo infusion - I was very proud of myself with the 1st chemo cycle. Needle phobia didn't cause me any issues. The 2nd cycle, delivered on a Tuesday 2 weeks ago, didn't go as well. Two nurses couldn't find my veins, despite a few attempts. What I struggle with most in these situations is the running commentary. Anyway, at some point I passed out. I woke up surrounded by nurses, and Madé smirking. Third nurse was awesome and got the job done on 1st attempt. In future I'm requesting 2 nurses by name.
- Chemo side effects - I've mentioned Palmar-Plantar Erythrodysesthesia (or Hand / Foot syndrome) before. Well this has got pretty bad on my feet in the last week. I had been trying to do a 30 minute treadmill run at the gym everyday but now I'm struggling to even put shoes on, the soles of my feet are so tender I can't walk far at all.
- Radiation side effects - Everyday that I go for radiation the nurses and treatment team ask me about side effects and for 4 weeks I've been gloating about having no side effects at all. Well, ummm, that changed very suddenly. On Friday last week I started getting a little tenderness. This got worse over the weekend. By Monday when I went in for my last radiation session (woohhoo) the pain was so bad it was making me nauseous. Radiation is cummulative and I'm on a pretty high dose (40 grey general area / 50 grey on tumour for 5 weeks for interested fellow cancer folk) so side effects can develop suddenly when your body hits a threshold of tolerance. One side effect is radiation enteritis which can give rise to Tenesmus. This is apparently what I've got. Oh, and a really lovely add on to Tenesmus is Hemorrhoids, a joy I've not previously experienced. Too much much information ? :) I've lost 6kgs in 5 days just from this combo effect (post coming soon on Cancer Buffness).
So yeah, this week is the 1st week in my little cancer journey that I feel like a real invalid. Haven't been able to help much at all around the house which feels bad. I split my time between bed and hot baths and watch the clock closely for when I can take my next painkiller. I was super disappointed about not making it to Jocelyn Carlin's funeral in New Zealand on Tuesday (and the breakfast with Auckland friends that I'd planned). Had the tickets and everything but the thought of being on a plane for 3 hours each way just ruled it out. When I bought the tickets last week I never imagined I could be feeling this bad just a week later !
Anyway, that's the update. Bit of a downer sorry, but I'm told the worst should pass within 1-2 weeks, I just have to make it through this side effect 'peak'. Just expect me to be a little quiet until then.
To share or not to share. I've struggled with this from the day we got the diagnosis. How much do you share about what's going on, and with who? How much do you share about how you're feeling and with who ?
Close to home there is the whole thing about protecting the people you love most from ugly stuff. Madé and I agreed early on that I shouldn't hold anything back, that we should discuss everything openly. We're also being pretty open and honest - to a point and to the extent that they can understand it - with the kids. My folks also stressed that they want all the details, unvarnished.
It gets trickier when you broaden the circle, especially when we have both family and friends, some very close to us, spread all over the world. In the early days we were getting sooooo many questions via email, SMS and calls that we knew we had to do something. We debated using a Facebook group but, I don't know why, that didn't seem right for us. Instead I opted to create this blog for that purpose, initially set up with password only access.
Then a new dimension was introduced. Several friends and co-workers kept suggesting that I try and find the good in the situation, that I should try and help others. I struggled with how to do this initially but after several people sent me private messages asking for some information I'd gathered on a few cancer topics I realized that I might be able to help folks just by sharing my treatment details and some of my own personal research. I figured I'm not exactly posting hyper sensitive stuff here so I added some of my own research notes (which I'm adding to weekly) and removed the site password.
Then I tried something which I'm still deciding whether it was the right thing to do. Again, with the "try and find a way to find the good in this" logic I experimented with a post on Medium, my 1st ever. Basically my pitch was "hey folks without a life threatening disease i.e. me a month ago, wake up and smell the roses - make the most of life". That went a little crazy and was a lesson in how the internet works. The Medium post was mentioned on my Linkedin & Twitter feeds because I'd linked the accounts and overnight it was shared more than 20k times. Within two weeks the post had been read 200k times - so much that another publication asked me to comment on it's popularity. Then a bunch of other publications around the world started writing about the post without even asking me. As I write this at least 10k people a day are reading it. To try and slow it all down I turned off my Facebook profile and made my Linkedin profile private.
But something pretty magical happened. First I got a lot (hundreds) of responses like this:
Scott, I'm not connected to you nor have we met but this story has moved me completely. I am literally sitting here in tears. Your words have had a profound impact and from this day forward I'll be getting regular health checks, abusing my body less (shitty foods and booze), getting fitter and seizing the day with a pep in my step from dawn to dusk. I'll cuddle my kids just that little bit longer and tighter, I'll whine less and I'll love that little bit more. Thank you for wearing your heart on your sleeve and sharing the story with the world.
...which made me think it might have had some positive impact.
I also got inundated with some amazing, very practical advice. Sure some of it was a little misplaced / dodgy, some was completely insensitive, but on the whole I learnt a huge amount from other cancer patients, survivors or their loved ones. I've even set up calls with some of these people. It's been really fascinating.
I don't really feel qualified to be some kind of spokesperson for cancer sufferers, or a variety of life guru. For that reason I've tried to dampen the whole thing down. But it has left me thinking, what is the right thing to do with this ? Could I somehow be helping other people ?
Anyway, maybe something to think about later, right now I've got other priorities...and I won't be doing any more Medium posts !