Gosh, I can't believe I last posted an update in March and now it is July. Since my last update there have been a few more ups and downs, as one would expect, but things on the whole are pretty good at the moment so this provides the opportunity for me to sit here and ponder.
In terms of my treatment, I completed my 10th round of Folfiri back in March and was sent off on a closely monitored "chemo break" in the hope it would be longer than my last one which lasted 3.5 months. This allowed me a few weeks to recover some of my energy and get things as back to normal as possible at home and with the kids without the disruption of so many hospital appointments and feeling a bit yuck. We took the opportunity to take a family holiday to the Sunshine Coast in Australia and treated the kids to Australia Zoo, Seaworld, sunshine, beaches and lots of swimming. It was a lovely break from reality and on the whole my energy levels were such that I was able to keep up with the kids and enjoy the trip.
On our return I was due for a CT scan to see how things were going and unfortunately this showed that the cancer was growing back again and quite rapidly. It was mirrored by a rapidly rising CEA and the decision was made to start back on chemo ASAP (another try with Xelox (Oxaliplatin plus Capecitabine) on a 3 weekly cycle). Chemo break over in just 10 short weeks. The positives were that a) it still hadn't spread beyond my liver and b) Xelox worked well last time. The negatives were that a) Oxaliplatin is pretty nasty stuff and b) the more chemo you have the less likely it is to work. It occurred to me that even though my cancer has responded well to treatment so far, it also appears to grow quite rapidly in the absence of treatment and I am rapidly chewing through my treatment options.
I was gutted about the prospect of starting back on chemo so soon, although in retrospect it wasn't just the prospect of the chemo itself but of the huge disruption it causes to my family, friends and our routines. People naturally kept asking the same questions - what drugs this time, it worked last time for you didn't it so it'll be fine, how many rounds, how long for, what's next. The answers I was giving over and over were exactly the same as when I first started on chemo back in January 2013 so this added to the whole feeling of "here we go again." Shit.
So round 1 (again) was on 4th June and round 2 was last week. I had a brief hospital admission a week after round 1 with a fever which did not turn out to be serious, and I was delighted to see my neutrophils were holding up better than they did when I had Folfiri. I have now had 20 rounds of chemo in total and some of the side effects are getting harder to control. I am finding that I am wiped out for about a week but start coming right after that and on the whole am able to enjoy the other two weeks. I am due for another CT scan after round 3 to see whether or not its working, and if it is, then the plan is to continue to 8 rounds, but this will largely be driven by the toxicity and the dose of Oxaliplatin may have to be reduced or stopped earlier than that. What's next? Who knows. At the moment please don't ask as I am just trying to get through each round one at a time.
One of the pros of Xelox versus Folfiri is that I shouldn't lose my hair this time. It is growing back quite nicely and I even treated myself to a proper haircut a couple of weeks ago. I guess to the outside world it may look like I am getting better.
The pondering I have been doing lately relates to the question "what would you do if you were given x months/years to live?" It turns out, that for me, it is "carry on carrying on." But take stock and enjoy the good times, the simple pleasures and being alive. You certainly know what a good day feels like when you've had a run of bad ones. Just the other day I delighted in taking the short walk to my son's school to pick him up at 3pm, chatting with him on the way home, playing xbox with him upon our return. The next day I went on a preschool trip with my daughter and relaxed into it rather than being on edge the whole time about where we had to be and when. I enjoyed every moment. Prior to my diagnosis I would have probably still picked my son up from school and gone on the trip but I doubt I would have viewed them in the same way. It's about slowing down and enjoying the simple things more.
