Hi everyone, thanks for all the comments, I’m honestly so touched that you keep checking in with me and sending me well wishes.
It’s been a few days now and I don’t have a great deal of news. My pain is much the same, but there are times it can be pretty debilitating and I’m worried it’s on a slow trajectory of worsening, feels like my liver is enormous and pushing against my ribs and back, a very weird pain to describe, a deep ache and difficult to take a deep breath sometimes, but I do have painkillers and a hot water bottle, although in this weather that’s a struggle in itself. I am grateful for the sun though.
I now have a clinical nurse specialist who is assigned to me and I have spoken with her. She’s sending me out a pack of information, things from MacMillan etc, and things for my son too. She’s also pushing for these scans to be done asap and is chasing them up - it’s blowing my mind that they aren’t being done yesterday, never mind today, and I’m having a hard time coping with that. Hopefully this week though. Is this normal? It doesn’t feel normal. She also talked about other pain relief I might be offered, and I’m kind of open to anything right now.
I’m trying to look after my diet and eat enough. I was shedding too much weight on carb free so I’ve had to reintroduce good carbs, but not eating any ‘rubbish’. I lost half a stone in a week from diagnosis, which was pretty appalling as I’m really slim anyway, but I’ve been forcing myself the last few days and have gained back a pound or two, which I feel is really hopeful. Hoping to get back over 8 stone. Feels like I am just shovelling food in me.
We went to church on Sunday. Haven’t actually been to church since I moved to Northern Ireland from Scotland 4 years ago, but just felt like we had to go, somehow faith is helping. Found the service a bit upsetting and yet uplifting at the same time. The congregation were very welcoming, didn’t tell them my woes though, can’t face telling strangers face to face - and yet here I am on Mumsnet.
I’ve been crying a lot the last couple of days, my mum said she might have to go home to sort out a few things and then come back, and I completely broke down in inconsolable tears. Trying not to cry in front of DS though. It’s hard living here sometimes, I’m away from all my extended family and friends who are in Scotland. I have a few lovely friends here, but it’s not the same as being at ‘home’. I feel worried I’ll never see what I regard as home again.
We went back to Browns Bay yesterday, it seems to have become our place. I have a bit of a walk along the sand for 5-10 mins and them I’m quite tired. Walking seems to bring on the back pain, but for someone who is used to walking at least 4 miles a day, it’s a huge change to be so sedentary, very frustrating, but I’m trying to do a bit of walking every day for physical and mental health.
I think that’s all my updates for now, received yet another bunch of flowers from a friend in Scotland today, and I have complete run out of vases. Everyone has been so very kind.
Some friends have sent supplements and all sorts of weird and wonderful things that I don’t have the first clue about. Also I’ve had about half a dozen cancer books - radical remission, one by a Chris Wark, some religious stuff too. It’s all extremely kind, but I don’t feel like I can really deal with all the supplement stuff just now and even the books feel like a mountain to climb to look at. It’s weird - I want to get better and embrace all of this, but it’s all so overwhelming and confusing and sometimes contradictory, and when I’m in pain it’s hard to concentrate.
Don’t laugh, but I’ve been doing painting by numbers (for adults). It’s actually been quite therapeutic and I’ve been listening to Agatha Christie plays on YouTube, they are about 1.5 hours long and as much as I can deal with in one sitting.
As ever, my family are being the most wonderful support. We are still sitting at the dinner table and talking about what we are grateful for that day. We are still pulling together and trying to be positive. I have very dark moments, but I am getting through and have drawn strength from somewhere.