Well, I’m still here, so I guess it wasn’t my last message. I read all your messages just now and I’m in tears at how kind people I don’t even know can be.
I am finding that writing things down is helping me go through this process and I want to continue that while I am well enough and compos mentis enough. Maybe I want to leave a lasting trace of me somewhere, I don’t know. I have written letters to my family and I’ve been speaking by message to friends, I can’t really face speaking on the phone as it’s hard not to break down.
As long as I feel well enough, I would like to continue to update you on this thread.
Yesterday was horrific as we had to tell our son. He has AS level exams at the moment and so we had held back. I spoke to his school first and they said I needed to tell him, and that he would get special consideration in his exams, if he can even continue with them.
We told him what is happening and he was just devastated. He is not one for cuddling his mum these days as he is 17, but suddenly I had my baby back and he cuddled me so tight for hours, crying, telling me he loves me and that he’s scared. That just broke me. He barely left my side all day, although I encouraged him to visit his girlfriend and her family for a couple of hours. I pre warned his girlfriends mum what the news was. I think it’s good that he continues to do normal things and not be surrounded in darkness and desperation all day.
My husband is being a rock, but he’s destroyed. We have the best marriage, we are so happy together, he is my best friend and we have so many plans. Im so worried about him and my son. I hope they can get through this together.
My mum’s plane arrives today at 11.30am.
I am going to fight. I have been very low and I can feel my strength isn’t sapping, when I look back I really have been tired lately and low in energy, hoovering knackering me more than usual that sort of things. Put it down to perimenopause. The stomach stuff just put down to the gastritis I’d been diagnosed with or abdominal muscle pain, actually thought my high waisted jeans must be too tight. Have had mid back pain for ages but again just thought I was getting creaky. If only it had been found sooner. I’ve never smoked, I don’t drink much, no family history, I’m 8 stone and eat a good diet. Why me?
On the positive side, I’ve been well and living life as normal up until a couple of weeks ago, so it’s not like I’ve had a terribly long drawn out suffering.
The multidisciplinary team meets today to discuss the plan - I’m not at that meeting, I will hear afterwards, don’t know if today or Monday. The wait is torture - why is it so long??? I just want to get started on any treatment they might give me, but I’m being realistic.
I’m trying to eat, my appetite is gone but I’m able to have things like bananas, soups, hot milk. I’m trying to keep my strength up that way so I can take some treatment if offered. I’m not being sick, so that’s a bonus.
I want to go and see the beach today. I want to be by the water. I think that’s the aim for the day. So I’m going to take my painkillers and see if I can manage it. I’ve had to start taking diazepam too for the anxiety and agitation. I’m just not able to settle or concentrate and it is helping, I’ve never taken anything like that before, I’m the sort of person who’d struggle through a headache rather than take a paracetamol. I’m on codeine and paracetamol for pain right now, it’s not really cutting it so I’m going to see if they can give me something stronger, but not too strong that it makes me loopy. I want to be as present as I can be.
I’m grateful I have some time to prepare, write letters, make videos, write cards. I’m doing all of those things. Im also praying, I’m trying to seek strength from God. Im not massively religious but it’s helping me and my husband to try to put things in God’s hands and have faith. My husband can’t accept that there is no hope. I’m not so good at that and keep talking about death but I’m trying to be strong and not lose hope. I am going to fight to stay here as long as I possibly can. I am filled with regret that this wasn’t found sooner when I’d have had a much better chance. I never thought this would happen to me.
Guys, appreciate every day, your health and your family. There is nothing more important in life. Work doesn’t really matter, small annoyances don’t matter, making tons of money doesn’t matter. Hug your kids tight and tell them you love them every day, tell your husband or partner you love them.
I’ve decided I would like to keep you posted when I feel up to it. I’ll keep going as much as I can. Please keep replying if you want to, it’s a comfort to read.