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The Waiting Place

My scan results came in on Friday. They weren’t fantastic but nor were they as bad as I feared.

I had my scans done at Peter Mac so got to hear the results from Michael. He is not panicked by them which I’m trying to take comfort from. In short, my liver now has three active mets as opposed to one in December. My lung now has two, although they are conveniently co-located which makes surgery a possibility. However I’m having a bit of liver pain and the fact the cancer has progressed while on treatment worries me. 

There are difficult choices ahead. We are hoping for surgery and looking at other options including taking a drug called Maraviroc off-label. A small clinical trial in Germany has shown very positive results for people with Micro Satellite Stable colorectal cancer. Maraviroc is actually a drug used for HIV. Of course it is on the PBS for that purpose but we will be looking at about $1300 a month for it. 

So I’m now in the waiting place. At some point in the next few weeks the multi-disciplinary team will consider surgery. I have everything crossed that this will happen. I’m not expecting it will cure me as it is likely the seeds of future metastasis are already planted. But I’d love to buy more time to tread water in the hope of future treatment advances. 

Surgery frightens me. I’m not sure I ever fully detailed how close to death I came after my bowel surgery last year. I nearly died twice. My bowel perforated, I got very sick and developed Acute Respiratory Distress Syndrome (google it – it’s bad). I don’t remember a lot of it, although I apparently asked my dad one morning if today was the day I was going to die.  My parents and David are still completely traumatised by what happened. It’s a testament to how much we want me to live that we’re all hoping the team decide on surgery. 

In the meantime I have chemo again tomorrow and then in a week we head off to the UK for a break. I desperately hope I can relax and forget about the uncertainty I live with. Cancer is a waiting game – it’s a great life if you don’t weaken. 

I’ve loved Dr Seuss’ The Places You’ll Go for a long time. I would read it to my class at the end of the year when I was teaching. I re-read it recently with a whole new perspective. I thought that I’d had hard choices and scary things in my life before, but really I hadn’t. 

You will come to a place where the streets are not marked. Some windows are lighted. But mostly they’re darked. A place you could sprain both your elbow and chin!Do you dare to stay out? Do you dare to go in? How much can you lose? How much can you win?

And IF you go in, should you turn left or right… or right-and-three-quarters? Or, maybe, not quite? Or go around back and sneak in from behind? Simple it’s not, I’m afraid you will find, for a mind-maker-upper to make up his mind. 

You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place. 

The Waiting Place… 

…for people just waiting. 

Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go 

or the phone to ring, or the snow to snow or waiting around for a Yes or a No or waiting for their hair to grow. 

Everyone is just waiting…

…I’m afraid that some times you’ll play lonely games too. Games you can’t win ’cause you’ll play against you. 

All Alone! Whether you like it or not, Alone will be something you’ll be quite a lot. 

And when you’re alone, there’s a very good chance you’ll meet things that scare you right out of your pants. 

There are some, down the road between hither and yon, that can scare you so much you won’t want to go on. 

But on you will go though the weather be foul 

On you will go though your enemies prowl On you will go though the Hakken-Kraks howl 

Onward up many a frightening creek, though your arms may get sore and your sneakers may leak.

Dr Seuss, The Places You’ll Go

4 thoughts on “The Waiting Place

  1. Eeeek! In googled it (ARDS)–very scary indeed. Bowel perforation?! That’s one of my fears–I thought I might have one after my last colonoscopy. Less than 24hrs after the procedure I spiked a 104.3 fever and had horrible abdominal pain. Had to go to the ER for CT scan & MRI. No perforation found but I demanded my GI give me antibiotics even though they tried to say it was probably “a virus”. And wouldn’t ya know, my fever broke within an hour of taking the first dose. They definitely gave me some sort of bacterial infection from the procedure but apparently not C.diff (I was tested). Anyways, that traumatized me and it wasn’t nearly as serious as your experience with ARDS. I’m sorry that happened to you. But I bet it’s unlikely to happen again, right? Lightening never strikes twice. I take comfort in statistics. Best wishes on surgery and new medicine! XOXO

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  2. My heart goes out to you I have the same cancer I had my large bowel removed in 2015 they knew then I had secondaries in my liver. Since then I’ve had two lots of chemo and last Year I went into hospital to the overboard of my liver which they said was 98% sure of a cure sadly they didn’t do the op as they found mitre tiny leisons. I had more chemo which kicked it back so,I then had seven months of chemo free life which was great. In Jan they said the cancer had got worse in my liver so I’m now back on chemo. I’m living with cancer not dying so I’m told. My heart goes out to you ,you have choices to make that I didn’t but believe me you are a fighter and we can’t letter beat us although I guess like me you sometimes feel you’ve had enough I’m pray go for you and if ever you want to chat I’m here xxxxxxxxxxxxxx

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  3. Really hard stuff Caitlin. Just feeling sick (and being made sick by chemo) must be truly awful. I feel so much for you and your family in the light of that recent health crisis that you described. I wish you a great break in the UK and lots of good treatment options ahead that do not come with horrible side effects. I am sure people with cancer get sick of other people saying you are brave because what choice do you have? But believe me, as a supportive onlooker who has not had to go through what you have and at such a young age and as the mother of a tiny girl who you want to see grow up, you are very courageous.

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