Hi everyone, today has been slightly less panicky, but also very difficult to settle, have much chat or enjoyment in anything, just floating. I was snappy with my mum earlier which I regret, she’s doing her best. Took a diazepam last night and did sleep better, albeit soaking in sweat.
My pain hasn’t been too bad, but I have the most awful full and bloated sensation in my upper abdomen, which is making it feel difficult to take a deep breath, and was making me a bit lightheaded earlier, better now. Can’t eat big quantities at all so going with little and often. Someone earlier in the thread asked about Creon - my doctor won’t prescribe it until I’ve seen the team, but I’m definitely having malabsorption issues - my hair has gone to shit, my nails have gone bendy and my skin looks so sallow and grey.
No further forwards in terms of plan, but I did manage to speak to my consultant’s secretary who told me that my case will be definitely be fully discussed and planned at this MDT meeting this Friday. THIS Friday - how can they let it go on so long?? I’m sitting here with cancer spreading itself about inside me! Am I that lost a cause that time doesn’t matter? I don’t know if this is how it works elsewhere, but it is how it seems to work here.
I keep getting dark and self blaming thoughts about why I didn’t follow this up sooner, why I just accepted that it was gastritis, perimenopause. I’ve been knackered for ages, I’ve had digestive issues for over a year. I keep blaming myself that this wasn’t found long ago when it might have been treated, that I should have advocated for myself better. I know I can’t think like that, but it’s hard.
Had another bunch of flowers sent to me by a friend today. I’m so touched by the kindness I’ve been shown.
My son had an exam today and he did his absolute best, he’s been a bit quiet and withdrawn today. I’m looking at options for him to go and speak to someone about all of this, it’s all very well speaking with us, but I think it might help if he also had some outside support.
DH has been doing a bit of work here and there at home. He is lucky in that he is a partner in the company so has some autonomy, but on the flip side of that he has responsibilities that aren’t easy to walk away from, even for a few days. He’s gone from an extremely busy and productive man to someone who doesn’t want to leave my side. As for my work, that couldn’t be further from my mind.
Feel like I’ve gone into a bit of denial that this is happening. I think it’s a coping mechanism as whenever I was facing up to the situation in the last few days, I was going into tailspin panics. Today I am more balanced but feel completely in denial. I guess that won’t last long once I see the oncologist.
One thing that I can’t seem to really do is cry. I have barely cried the whole time, and I’m a crier. I’ve shed a few tears here and there, but I haven’t bawled. I don’t understand that at all.
Taking some advice and have tried visualisations and also definitely trying to stay away from google. Fell down the rabbit hole of looking at natural cancer protocols though, but they are so convoluted and filled with bizarre things (turkey tail mushrooms anyone?) that I just can’t go there right now.
One thing we are doing at the dinner table is taking turns to talk about one thing in that day we are grateful for. I thought it would be a positive thing to start doing as I really don’t want the road ahead to make my family bitter about life in general, tough days will come but I still want to look for the light.
We are also talking about favourite memories we have, it’s kind of uplifting and heartbreaking at the same time, but somehow it feels important.