liver cancer and Lenvatinib

That's great to hear Roy! Hang in there...

Hi Rachel,

Good to hear you're back at work - it must be nice, really, even though strange. We're doing ok, I think. The side-effects of Lenvatinib were not at all as scary as I expected. The main one is still the immense fatigue, but my husband is getting better at pushing himself just a little bit. At first he essentially stopped doing everything - hardly walking across the room to put a cup down - and I just did everything for him. It has been hard to know how much to support and how much to nag! But it has now improved a bit, and he does more, though he is more or less housebound. He is 72, though, which I know is older than some of the people who may be reading this. I'm 65 - and I'm having to be a lot more active in retirement (end of last year)  than I planned! I'm having refresher driving lessons, as he did all the driving, but I'm not sure that's very safe any more. Lazily, I'd let him take over, though I do have a licence so I hope I'll get back up to speed.

We went to the hospital last week and the tumour seems to be stable - no growth. So the Lenvatinib does seem to be working. The cancer marker in his blood has gone down a lot, too. Fingers crossed that it keeps working. I know it usually stops after a while. He only takes 8mg not 12, as they thought the full dose would make the fatigue too bad.    

We went to Crete - and I'm so glad we made the effort! So is he. I got a wheelchair for him, and assisted boarding at Heathrow was fantastic - so smooth, and everyone helpful. I loved that we went to the 'wrong' side of the plane on a hoist thing for his chair, then the operator knocked on the door to be let in! It was equally easy at Chania when we got off.

My husband really screwed up all his efforts to make the journey, and didn't really enjoy the plane - he seems to have lost his ability to nap on planes. So when we got there he was very tired for the first few days. And he didn't get out and about much at all, but the villa was nice, with lovely views, and our two year old granddaughter came for a week which kept him amused - also we (me and my two other daughters) could wheel him to local tavernas in the evening. Sadly, he no longer likes eating and drinking like he once did, and gets tired sitting at a table after an hour or so - but we adjusted our routines, and he really did have a good time.

I'm writing all this in case anyone reading is as worried and hesitant as I was (or we were) about a holiday abroad. In general and if possible, I would say 'go for it.' It's good to have something to look forward to, and to talk about when you get back. Oh and I should add, I know people struggle with insurance. We had put ours in place before his diagnosis, so the insurers said ok we'll cover you this time, but in future we'd have to take his condition into account. So we didn't have problems, but I guess we might in future, if in fact we try to do something similar again. We'll see.

So that's my progress report, Rachel, and thank you for asking. Obviously the situation is not brilliant - I do worry, as I think everyone does, about him maintaining a quality of 'life worth living,' and I can see it could become a delicate balance. But for now it is certainly worth living, and he enjoys people and company even though he can't do much. So it really could be a lot worse. And from my personal point of view, as semi-'carer', all I can say is, it's amazing what you get used to! I still have very low moments - doesn't everyone? - but I think I'm more philosophical and fatalistic than I was. I'm also getting a bit better at maintaining my own life, and getting out myself from time to time, which certainly helps my mood and energy levels. So fingers crossed that that will remain possible for a while yet, too.

All best,

A x