A Big Ben update

Well, I am sitting here in Ben's parents' living room, using Ben's laptop to type this update. Where do I start? I guess I start from the last update...

Last time I reported on Ben was to say that he wasn't having liver surgery as we had originally thought. This was an unexpected change of plan, and although at first we were uneasy about it, we maintained a positive attitude and thought, well, great, he is avoiding a big operation, that can only be good. But as more time went by and we spoke to more and more people about it, the more we came to the conclusion that not having surgery wasn't a good idea. Even Ben's oncologist suggested we get a second opinion.

So Ben went and spoke to a second liver surgeon. This guy seemed to have a much better idea of what was going on and gave me a much better vibe. (The original liver surgeon Ben saw gave me a bad vibe - he didn't seem to have all the facts of Ben's case with him when he saw Ben and didn't seem to have communicated with Ben's oncologist which did not reassure us at all.) The second surgeon fully recommended liver surgery. It's apparently a known fact that the best way to cure cancer is to operate AND have chemotherapy. Chemo alone apparently carries more risk that cancerous cells will grow back. So we went ahead and booked liver surgery for mid-April.

We were much better prepared for this surgery - I booked 2 weeks off work, and we arranged to stay with Ben's parents as they live closer to the hospital than we do (it's Basingstoke hospital). With no work, immediate family support available, and nearby babies (our delightful nieces Izzy and Liv) to keep our hearts light the scenario was much more comforting than the one we had following Ben's bowel surgery last year. (I was very stressed trying to balance work, looking after Ben and being everyone's point of contact)

We took him into hospital yesterday, and were visited by the usual rounds of staff - nurses, the anaesthetist, the consultant and registrar, a doctor, the consultant's representative, etc. The anaesthetist sat down with Ben and gave an excellent description of what would happen during surgery and how his pain would be managed. The consultant's representative also sat down and told us what the surgery would involve and what the risks were. He told us that Ben would most likely have his entire right lobe removed, as well as a wedge from the left lobe. When I asked how much of his liver that added up to, he said 60%. This came as a shock, because to date we'd only been told about the wedge, about it being a small operation, and that they 'would have a look' at the lesions on the right of his liver that had been blurry and inconclusive on the scan and decide what was required during the operation. I guess the guy was trying to paint the worst-case scenario for us, but I was really worried about the 60%, as were Ben's parents. We tried not to let our concern show for Ben's sake, but it was difficult. And I really hated leaving him there at the hospital all alone last night. I came home and lost myself in silly internetting to distract myself from getting distressed.

This morning we got a phone call from the consultant post-surgery, much earlier than we expected. He told us that it was a small operation after all - they managed to remove all the lesions from Ben's liver without taking more than 10% of it out. And he only lost a cup of blood. Given how much blood runs through the liver this was a great result. June (Ben's Mum) and I were so happy about this news that we hugged and had a little cry after the phone call. I am so happy... I know people recover from having the 60% liver resection but it was just another unexpected turn of events I wasn't prepared for.

I guess you just need to be ready for the landscape to change at any time with these things. Doctors' opinions change, further scans can change diagnoses and treatments, treatments can change based on the patient's reaction to them... you just have to be flexible and open to the best outcome, regardless of how twisty and turny the route to it can become.

I am just so happy to know my boy is ok. He is a trooper, and I am positive he will recover well from this surgery as he did the bowel operation. I get to see him tomorrow afternoon (this hospital is rather strict on visiting so I can't stay with him all day) and I can't wait.

After this, he has a 6-8 week recovery period, then 2 cycles of chemo left. Then I pray that that's it. He will need to be closely monitored - scans every 3 months for the first year post chemo at least, because he is so young and there is more time for potential regrowth. But I am confident we will see the end of it this year.

Thank you again to everyone who has emailed, texted, called, Facebooked etc. Your love and support has been invaluable and I'm sure it's had a lot to do with the great outcomes we're having. Thank you so much :) xxx

A slight change of plan

After a great chemo-free Christmas and New Year, Ben got away for a few days snowboarding in Austria (under strict instructions to not push himself or do anything silly). The fresh air, exercise, and fun of doing one of the things he loves best did my boy the world of good and he came back smiling and with his (side-effect) acne greatly reduced.

So then Ben and I were gearing up for his liver surgery which was supposed to happen in mid-January. But at his next consultation, the liver surgeon said he wanted to do another scan, just to be sure. The scan revealed the lesions had shrunk so much due to the chemo that it just wasn't going to be worth operating. So great news is that Ben doesn't need surgery! Of course this threw us at first - being told one thing, then another under these circumstances doesn't make anything easier, but it's wonderful that he doesn't have to go through the trauma of surgery again. And it's clear that the cocktail of drugs Ben is on is working, which is also great.

So, while we still have a few questions about what it all means for future eradication of all cancer cells, we're happy, and now making social plans for the next 6 weeks!

Ben will be starting the next round of chemo next week. This will be another 3-month stint. We're better prepared this time - he's getting a 'portocath' (presumably a portable catheter) put in under the skin on his chest so the IV chemo drugs can be plugged straight into there rather than into his arm veins which have been suffering a bit.

Thanks to everyone who made enquiries after Ben's (and my) health... sorry I've not had much of an online presence lately... it was just an overhead I couldn't deal with while we sorted out what was happening with treatments, and work/leave arrangements and everything else. Needless to say your ongoing support and love is helping us along enormously, as always :)

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.