Not Dead Yet !: Status as at 31 Dec 2018

I like to provide the occasional status report, a "how I am today" that does not disappear down the screen as I post more entries. If you've found this post and are wondering, How is Nick today? … look at the "Current status as at" tab towards the top left of the screen.

Last update was at 6th August 2018... it's definitely time to update. Not that -- as far as I can remember -- much has changed since then. To be succinct: all is still good.

Now for the usual... less succinct. This post will be a standard ramble. Then I'll try to pick just the key points for the Status page.

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For, as they say, Those who Came in Late:

This is where it started

My wife and I enjoy life while we are still active & healthy enough to do so. This includes regular holidays, often based around organised walks and runs. I keep a journal of each holiday.

Over the years my holiday journal technique has been refined. I now type each day's excitement as an email. The emails are posted -- when internet access is available -- to a blog. Later, home again, I combine journal posts with photos to create a permanent hardcopy travel journal.

Our holidays are active -- walk and run while we still can. Do it now, while we can because we are Not Dead Yet. Hence the name of this blog. (I did try for not.dead.yet but it is taken. So I settled for notdotdeaddotyet. ie: "Not dot Dead dot Yet"...)

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August 27th 2017:

I'm running in the City to Surf half marathon. I collapse, wake up in the Emergency Department of Sir Charles Gairdner Hospital. I'm told that I have an aggressive, terminal brain cancer, GBM4. A few more questions, a quick grope, and I am also diagnosed with testicular cancer.

There is a 50% chance that the brain cancer will kill me within 12 months. Later scans show that the testicular cancer has spread into my torso but it is treatable and low risk.

August 29th 2017: I start to blog my experience. Warts and all. (Not that there are warts. It's far more interesting than that...) The blog name -- Not Dead Yet -- is still appropriate. It is now a blog for living... dying... with cancer. And a blog for our holidays.

I am, after all, Not Dead Yet :-)

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Over the next days, weeks and months:

My skull is opened and a tumour removed from the brain. My groin is opened and the cancerous right testicle removed.

I am radiated, over several weeks. The brain gets a very focussed dose, can't afford to damage too much of the brain. That's one reason for the nastiness of brain cancer: it's not wise to chop out too much brain, so there is a high risk of microscopic cancer cells being left behind.

My gut gets a slightly broader dose of radiation, only minor worries about collateral damage, it's better to kill a few healthy cells than to allow cancerous cells to survive.

I revisit ED (Emergency Department) a few times due to post-operation inflammation of the lining of the brain.

During and after radiation treatment I have several months of chemotherapy. An effective drug but it plays merry hell with my digestive systems :-( No, I won't go into detail, I try to put those memories behind me. As I put a lot behind me at the time...

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There are regular scans: MRI, CAT, PET, even an ultrasound (no, I was not pregnant). Six months from my collapse, I am clear of visible cancers.

GBM4 is not all that common. Having a second "primary" cancer is more unusual. Twelve months on -- when 50% of GBM4 patients would be dead -- I am still clear of visible cancers. Beating the odds all the way :-) I buy several Lotto tickets, win one, fail to recoup the costs. Ah well... I'd rather be lucky with the cancer.

I've been trying to get fit. I took up running marathons in 2012, when I turned sixty. Ran twelve, finished ten, between then and 2016. Slowed down to half-marathons. I am now trying to get fit enough for 10 to 15km trail runs. My heart pumps okay, the legs are getting there, the lungs need a lot of training...

As I said to Deb, I would like to have sex... Okay, I could have left it there. I really said, I would like to have sex without panting and puffing like a steam engine. Recovering from cancer treatment has left me very unfit.

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I have always been 5kg above my "target weight as a runner", now I am 10kg above that target. Back from our latest holiday and I determine, I will get into more regular running training and I will lose some of that 10kg. Since then I have run 5km several times each week, and gained a kilo. Oh well, win some, lose some.

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So where am I now:

Physical: Fitness at about 70% what it was in August 2017; main problem is weight & breath. Health (ignoring cancer) is at 95%; some residual, occasional, bowel over-activity. And the soles of my feet tingle, a side-effect of the chemo drug. It's most noticeable after a run.

Interesting: I've had a week or so of solid WoW play -- staring at the screen for hours on end -- but without the expected dizziness. Either I'm taking enough breaks. Or that dizziness was an unidentified symptom of a damaged brain... No, staring fixedly at a screen seems to be a more realistic reason for the dizziness.

I do have aches in the shoulders and arms. Signs of a heart attack, according to a scary magazine article. More likely to be RSI or OOS from too much work & play at a keyboard.

Mental: Still with a high IQ and low street smarts, no change. As far as I can tell. The daily crossword seems easier but that could be my acceptance of a near-miss as an answer. eg Opposite in seven letters, I write "--verse" till another clue tells me whether it starts with ob or re or ad or in... and I'm happy to accept that each of those four options has a shade of meaning that is not really opposite.

I do have occasional trouble thinking of the exact word for a sentence. That's not new, I suspect it's a result of less and less conversation to keep the speech centres fresh.

Emotional: I'm balancing disbelief and acceptance. On our last holiday I hit the emotional up-swing, I have now climbed back to the state I was in for several years: enjoyment mixed with frustration. Enjoying life, frustrated at my inability (my own fault) to do all of the things I would like to do. And not believing that I have a terminal cancer.

It's definitely disbelief not denial. The same feeling of invulnerability, that the worst will never happen to me. At the same time I accept that the brain cancer will eventually return and kill me. My aim is to balance the two states. Enough disbelief to enjoy life, enough acceptance that I will not shatter when the cancer returns.

That's the thing, the cancer will return. GBM4 is known to be aggressive, it's known to be terminal. It's a matter of when, and where in the brain it grows the next tumour. I was scanned in early December. It's unlikely that a fresh tumour will kill me in the three months until the next scan. Three months to enjoy life :-)

When a tumour does come back, treatment will depend on the tumour location. (Yes, it will be in the brain...) Most likely, I'll be up for more surgery (or cyber surgery?), more radiation, more chemo. Followed by time for recovery. Until treatment fails or is not possible.

I do have occasional moments of near melt-down. I think, Bugger, no, I don't believe it, I can't just die from cancer. Moments when I feel that an emotional melt-down would be worthwhile. Or fun, anyway. Then I think, Ah stuff it. And carry on.

I'm lucky to have all this time to prepare the way for Deb living without me... Pity I've done so little to prepare. Poor Deb :-(

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So, current status: I'm fit but need more fitness. I'm healthy & happy. With occasional moments of existential ouch. I'm good for another few months. At least till the next scan.

btw: "Need more fitness"? Really? Why? It seems that being fit helps me to deal with the cancer and its treatment. So I want to be fit for the next scare. Anyway, getting fit is worth the effort. Never know, I may have enough time to get fit enough for the Cradle Mountain trail run :-)