Hi everyone, I thought I should update. I’m not really in the best frame of mind so apologies if it’s not particularly engaging.
On the plus side, DS had his last exam yesterday and thought he did really well. So pleased for him. He thought he would get a break this weekend before going back to school on Monday, but he found out yesterday that he’s been shortlisted for Head Boy and needs to prepare a presentation for Monday, so he’s been busy working away on that. Can’t possibly tell you how proud I am of him.
I’m still on the steroids and pregabalin, the steroids have definitely helped the abdominal pain over the liver and at least enable me to get some peace from that, and they have helped the fevers too, but the back pain has been so wicked, I’ve never felt anything like it. Apparently it’s nerve pain from the whole situation and tumour pressing on various nerves. Sometimes it tingles before pain, so I would say it is certainly nerve related. I just can’t really get comfortable anywhere, although sitting forward is a bit better - doesn’t make trying to sleep much fun. It’s a pain it’s hard to get away from and I’m not in best form to be around when it’s bad. Also worried that it’s really preventing me from doing much but sit on my bum. I can maybe manage 5 mins walk until the back pain is just too much. Thing is, I’ve kind of got energy (not bags of it) but the pain is preventing me doing much. Been told to up the pregabalin again as you need to increase in stages, hoping that helps.
DH is struggling, he’s trying to do a lot including working and things around the house, including cooking. He has never had to do any of that before as I always looked after everything domestically, and his stress levels are really becoming quite obvious and fraught. He was shouting at potatoes 10 minutes ago. It’s not his fault, and obviously it’s not the potatoes. It’s a bit hard to be around though because I then react to his stress, and my tolerance for any stress at the moment is practically zero, so then I simply start crying and it all descends into a bit of turmoil. I need to find a better way of managing all of this, because I don’t want it to get worse. We have a road ahead of us and I can’t deal with my own situation and also manage DH’s stress too, it just feels too much for me, but I don’t know if it would help him to talk to someone or really how to help him to bear his own burden. It’s so difficult. I’m scared that the whole dynamic of our marriage has suddenly changed and what that means.
My mum is still here thankfully, but she’s not a spring chicken and she struggles to do too much around the house, although is a laundry wizard but by her own admission a terrible cook. She is helpful just being there and isn’t as naturally a stressful a person as DH. I’m sure having the MIL here all the time might not be as wonderful for DH though, although thankfully we have enough space so not in each other’s pockets.
Anyway, that’s my update. Tough few days really, just holding out for this PET scan on Monday, and have a private appointment on Monday evening with a liver specialist - he is apparently part of the MDT, so hopefully he can give us some information about what the next steps are and how things are likely to proceed.
Going to try to enjoy a bit of sun this weekend, life is still very precious and worth holding on to. Also keeping my faith strong and trying to do at least one good thing a day. Thanks all for your updates and support, it really does help. I know I don’t respond to everyone individually but I really do read them all and follow up a lot of the advice and helpful suggestions I’ve been given.