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 :)