Hello everyone, I hoped to be back sooner with an update, but have had a couple of really bad days symptom wise and couldn’t face it.
Have things a bit more under control today as yesterday was told to up the steroids and am now on a fairly hefty dose of codeine along with the pregabalin. It’s been the liver pain mainly, my abdomen is swollen (thankfully not ascites) and bloated with the tumour and associated inflammation, and I’m having what can best be described as liver spasms which are quite breathtakingly awful and can come on with the slightest movement. I can’t speak at all when it’s happening and feels like someone has grabbed my liver and squeezing very tight. The exhaustion has been profound and now feeling quite nauseous a lot which is unpleasant as I really don’t fancy anything to eat, but forcing myself. I think the codeine is responsible for the queasiness and I’m a bit spaced out and sleepy, but it does help a bit with the pain, so it’s a kind of catch 22. Has totally bunged me up though, so now also on laxatives. So all in all, not much fun being had right now.
Meeting went ok on Tuesday, I’d already had the PET scan results so it wasn’t new information and we didn’t discuss prognosis at all thankfully, it was all quite positive and about next steps and treatment, so that was good as I was worried it would be really negative. I just do not want to know timelines, I don’t think that’s helpful for me personally, I didn’t have to say that I didn’t want to know, but I will say if I have to.
So, I am having a liver biopsy on Monday at 12pm and from there the doors open to treatment. So we are slowly getting there. Worried about biopsy pain given that I’m already in a bad place with pain, but needs must as we need to know exactly what the tumour is. It’s a day surgery and all being well I should get out in the evening after 6 hours of monitoring to make sure there is not bleeding.
DH has been incredibly good at exploring every single option, and we are having a video consultation on July 3 with a Professor Bridgewater in London who is apparently the top guy for this sort of cancer in the UK. He can then advise us on treatment plan, and if there is any way it can be started quicker, or other immunotherapy drugs that can also be used then we can go to London and get treatment there privately hopefully through our Bupa policy. That comes with it’s own logistical problems, although I have a very kind friend in London who has said that we are very welcome to stay with her. I would rather not travel, apart from anything else I don’t feel well enough to, but I think it will be really helpful to get this man’s input as he comes very highly recommended, and if it turns out that I can get better/faster treatment in London, then of course I will force myself to go.
Home life has been a little more fraught as everyone’s been worried about my apparent decline in the last couple of days, but hopefully with the med changes things will rally a bit - DH has now printed out a schedule of my meds and timings, I think it helps him to feel proactive. I do feel better than I did this time yesterday, although I do also feel like I’m slightly on another planet and not really with it at all, very odd feeling indeed.
Haven't been anywhere apart from the hospital on Tuesday, haven’t honestly felt like it. I did make an apple crumble at the weekend though, so not entirely useless - although had to sit down to peel the apples and make the crumble, but nevertheless, made it. To those who asked about cake - no I haven’t yet had any as I don’t really want shop bought. I may make a Victoria sponge at some point if I can summon the energy, I figure I might as well have what I fancy within reason. The crumble was very nice and is my ds’s favourite.
Sunny here today so I’m going to sit outside on a comfy chair and try to read my book for a while. I can’t handle anything too involved, so I’m reading a lighthearted Katie Fforde book.
Thank you to everyone who is checking in on me and sending good wishes. I read them all and appreciate every one. I’m still praying all the time and have lots of people praying for me, some at church and at my friend’s church, and some close friends and family who know. Still haven’t told my wider circle yet and can’t really face it, maybe will once I start treatment. I guess if I’m going to be bald then it will be a bit obvious, especially as my hair has always been my thing - it’s long and blonde but honestly being bald is the absolute last of my worries right now, I would be happily hair free if it gave me a chance to live!