sur·viv·al

[ser-vahy-vuhl]

noun

1. the act or fact of surviving, especially under adverse or unusual circumstances.

2. a person or thing that survives or endures, especially an ancient custom, observance, belief, or the like.

Defining survival appears straightforward, but within cancer circles it isn't. The days are gone when your medical professional declares 'You're cured!'. Instead, careful language filled with scientific precautionary and cautionary thinking is used. Terms like 'no evidence of disease' and 'long-term remission' now dominate.

Let me say up front that I am not complaining. The fact I am even thinking about this aspect of cancer means my treatments did what they were supposed to do and for now I have no evidence of disease.

In cancer circles I get to say: I'm n-e-d

I like the new vocab because while being realistic and pragmatic it still allows for bouts of spontaneous celebratory dancing. I am technically, at this stage and time, and according to standard medical imagery and oncological understanding, cancer-free. I may not stay that way (indeed, 50% of colorectal cancers reoccur), but I am that way now and that is enough to ride the optimism bike as far as the eye can see.

But have I survived?

Not according to medical researchers, because they measure cancer survival as being alive five years and ten years post-diagnosis. This is the benchmark and the universal metric used in clinical trials and in hospital and governmental reporting.

It's all about how you play the game

Maybe, according to the Cancer Council, because they define a survivor as someone who has finished 'active' cancer treatment. Does my 11 months of further anticoagulation therapy count? And what about the fact I am still living with a 'temporary' ileostomy?

Yes, according to the National Centre for Cancer Survivorship (USA) that states that you are a survivor from the date of your diagnosis.

Process or end result?

The survival question really is one of process versus end result.

My thinking is that working from the date of diagnosis is the most practical. But what about the five to ten years (the time it takes for a polyp in the colon to become cancer) that I was living with cancer before my diagnosis?

I like the idea of acknowledging the process of living and surviving with cancer, and not the final outcome. The date of diagnosis is really just the date that I became aware of my cancer. My body knew long before I did - It had been fully engaged in attacking the tumour and was surviving.

Actually, my body was enduring under a large tumour load, on top of alcohol consumption, large amounts of passive smoking (people can still smoke nearly everywhere in China), and eating fast food and chocolate.

Someone that died three months after their diagnosis survived three months (and more) in my opinion. Someone that died seven years after a second bout of lung cancer survived seven years (and more). Someone having chemotherapy is surviving. And so is someone cancer-free after 15 years.

A focus on the process seems consistent with talk of a 'cancer journey' anyway. There is no need to get hung up on the end point, whether that is death or life, because cancer is a process and so is healing from and living with it.

#5 on the Cancer Charts

Clots and cancer

I have a new life-threatening condition, and it's not cancer. My new condition was picked up in a CT scan done at the end of chemotherapy. This CT was done to re-stage my cancer, but what it actually did was save my life.

I have several blood clots, in the lungs. It turns out that cancer is an independent risk factor for developing blood clots. This means that cancer alone predisposes someone to developing a clot. Cancer treatments like surgery and chemotherapy also increase the chances that someone will develop a clot.

DVT + PE = VTE

Deep vein thrombosis (DVT) is the name given to a clot that forms in veins in the legs or pelvis. A pulmonay embolism (PE) is a clot in the lungs. Often, clots that form in the legs or pelvis (DVT) travel to the lungs (PE) and taken together these conditions are called venous thromboembolism, or VTE.

Where my clots formed is unknown, but four are now stuck in a mid-section of the left lung. I have no symptoms (for hypochondriacs already asking Dr Google if they have a PE, symptoms would include chest pain, shortness of breath or a fluttering heart beat) and if not for the CT I would be none the wiser (radiologists are some of the unsung heroes of cancer treatment and care).

What is known is that people with cancer are 4 times more likely to develop a blood clot than other people; 20 % of VTEs occur in people with cancer; and developing VTE is associated with a poorer prognosis (depending on the type of cancer).

Clots are more common after abdominal surgery (tick) and neurosurgery, periods of immobilization (tick), and after certain chemotherapeutics such as 5FU (tick). Clots are also more common in overweight (cross) or older people (cross) and people with brain, pancreatic, stomach, ovarian or blood cancers (all crosses). The propensity to develop clots can also be genetic (unknown, testing to follow).

Clotting curve ball

People with cancer get used to curve balls. They come at us from unexpected directions and have a way of sneaking up on us with speed. I'm adding 'pulmonary embolism' to my List of Cancer Curve Balls. It occupies position 4 in my cancer chronology. 

List of Cancer Curve Balls

Number 1: having a floppy sigmoid

Number 2: finding out the tumour was bigger than expected and trying to eat other tissues

Number 3: springing a leak in my newly resected colon

Number 4: four blood clots near my lungs

Crushing the clot

I am on a high dose of heparin (a blood thinner) for the next 12 months. I have to inject this myself into my thighs or abdomen. This particular anticoagulant (blood thinner) has a reputation for coming in blunt-ish needles and for stinging like hell and causing bruising. I can confirm all three.

The fact I can now inject myself, knowingly inflict pain and cause impressive bruises all adds to my street cred. These new traits are up there with my scars, tattoos and the fact I can poo in any position (courtesy of the bag). 

Me and my immunity

Macrophages, killer T cells, memory cells, helper cells, natural killer cells, phagocytes, antigens, B cells, neutrophils. The spleen, thymus, lymphatic system and hormones.

This is the Immune Toolbox. This set of tools didn't really work for me before, but it's the only set I have and these are the tools I now need to trust, nourish and cherish.

These tools stands between me and more cancer. It is what will capture and terminate any cancerous cells and microtumours that pop up in the future.

Radiation, chemotherapy, surgery and more chemotherapy were tough; some people even call them toxic (I don't).

These treatments can be difficult to endure, but for me they were an excellent safety net: stuff was being done. Ionizing radiation was hurting the tumour, chemical soups flowed through my body 'cleaning' it up, someone was cutting out cancerous tissue, another was examining lymph nodes for travelling disease. It was all hands on deck and my Immune Toolbox could take a breather.

Not now though. Rest over. All my systems are go. Action!

The immune system is complex and how it is affected by what we eat, drink, do and think is an emerging field called Psychoneuroimmunology. Obviously something wasn't right with my Immune Toolbox before because I don't have a known genetic disorder, I exercised, was a very low meat eater and didn't smoke (all known risk factors for colorectal cancer).

And recently a leading UK cancer organisation released a study showing that at least 40% of cancers result from lifestyle factors, factors that can be controlled.

So what am I going to do differently now that treatment is over? I'm not sure.Treatment only finished 12 days ago, and the chemotherapeutics would have only just been metabolized.

I'm still working it out. Watch this space.

Lists

A good barometer for my overall level of well-being is my attitude towards post-it notes. As I have written here before, I went off to-do lists and post-its and spreadsheets and planning soon after being diagnosed with bot bot cancer.

This was quite a surprise (to me especially) because I love lists. Lists are so structured and clear and organised. I learnt to use them because I don't have a particularly good memory for general stuff (but I can however tell you the Latin name given to the common wombat).

Post-it notes are back. I don't remember when it happened, but all of a sudden I found myself writing things down that I needed to remember to do and that weren't related to cancer. Buy soy milk. Email Kim. Water parsley. Call Nancy back.

People with cancer know that things drop off general to-do lists when in the throes of trying to stay alive. Staying alive is, after all, the biggest to-do. I haven't wanted to put anything else on my list since January.

But now I am nearing the end of treatment and have started to appreciate small things again: things that I would have previously thought were a waste of my precious time, things that 'didn't matter'.

Having post-it notes back in my life is nice. Those little coloured squares are a sign that I am, once again, thinking of a world with me in it.

Fame

The run is over, the money is banked.

Thanks again to everyone that supported me financially and otherwise in the lead up to the race and on the day.

Your support of The Warwick Foundation meant the total raised was $5500, the 7th highest amount for an individual (12000 people participated).

The Warwick Foundation is a small organisation with a big mandate and each dollar donated to them goes a long way.

I also achieved my two minutes of fame when ran a piece on me, the run and the Foundation.