A holiday, a fresh perspective, and settling into life with chemo

So it's been a long while between posts. Obviously a lot has been going on. Let's go back a few months to the last update, when Ben had his bowel surgery...

Immediately following the surgery Ben made a really good recovery and was let out of hospital early, which was really heartening. Then came a really difficult couple of weeks for me where I was juggling looking after Ben, finishing off a work project from home (unfortunately it was the tail end of a project I couldn't really hand over as it was all in my head) and fielding the much appreciated but voluminous enquiries after Ben's health via email, text and phone. I have to admit I really struggled through this period and was in some despair. I felt I couldn't give Ben all my attention because of work, and so was dealing with guilt on top of everything else.

But then, finally, my project was over and it was only a few days until a holiday we'd had scheduled for Portugal. Talk about serendipitous timing! It really was an absolute blessing to have that time-out. Ben's surgeon had not only said it was ok for him to travel, but heartily recommended it, so off we went, to sunshine and fresh seafood and family and babies! James and Tracy were at the family villa with their babies as well as Ben's parents. It was simply wonderful to sit back and be looked after by someone else for a change. And Ben's parents, who'd been stuck in Portugal while Ben was in hospital, were more than happy to be looking after us. We basically did very little for 10 days, and it was completely wonderful. We played with the beautiful little girls every day, went for walks in the sunshine, swam (I did; Ben sensibly sat in the shade by the pool), ate lots of delicious meals and read loads of books. But most importantly, we didn't think about the cancer or the treatment, or anything. It was all very very therapeutic.

To be honest, Ben had gone pretty much straight from diagnosis to surgery... it all happened so quickly and was such a big shock that we hadn't really processed it. The holiday was our first chance for our brains and our emotions to catch up with everything and come to terms with it. So when we finally came back home we felt rejuvenated and relaxed and ready to deal with the next stage: chemotherapy.

We already knew it was a mild form of chemo that Ben would be receiving, so he wouldn't experience symptoms like hair loss, but it would be taking some toll on his energy and result in a few other symptoms. We had visited the oncologist and she had explained it all to us in a blur of medical jargon. We'd also learned that his liver was showing some signs of damage, but a scan and consultation later, we still couldn't be 100% sure (and neither could the experts) that it was bowel cancer that had spread, or something different entirely.

So Ben started his chemo treatment just about a month ago, with a view to doing it for 3 months, then having liver surgery, then doing another round of chemo treatment for 3 months. It hasn't been scheduled, but we imagine the liver surgery will happen in late January.

In terms of the treatment, the main drug works on a 3-week cycle, which means that every 3rd Monday Ben has to go into the oncology clinic and get an intravenous infusion. He's also started a second drug which works on a 2-week cycle. And on top of all that, he has to take a complex medley of pills a few times a day - steroids, anti-nausea pills, and others. It's not been much fun - the infusions leave his arm sore for a week, and he experiences a lot of nausea and fatigue in the first week. But in the second week this improves and by the third week he's feeling almost normal. Bizarrely, the second drug has cause his eyelashes to grow longer! Weird, but wonderful :)

After cautiously returning to work, Ben has come to a sensible working arrangement: he will be taking the main week of injections off, and then working a 4-day week in other weeks. And even better, my work has approved me taking off every 3rd Monday so I can accompany Ben to the clinic for his big injections, which has eased a lot of distress for me.

This is a difficult time for both of us, and we're still trying to work out how much we can handle, and what support structures we need in place to make our journey easier and more comfortable. I've certainly come to realise that I can't just soldier on and expect everything to be ok - we all need shoulders to cry on, and I can't keep crying on Ben's - he's got enough on his plate already! And I've realised I've really done both me and my friends a disservice by not letting them know sooner. (Most of them don't read this blog, and wouldn't have received Ben's 'you ought to know' email.) I didn't mean to go on for so long in silence... when it all went down I didn't know if I was coming or going, and then when we came back from Portugal it was all very busy with work and weddings and other things going on.

But now's the time to let them all know. I miss them and love them so much. And, let's face it, I need them right now.