Post 131: Should I be more proactive?
I want to be noticed but I’m not even going.
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The fear of missing out (FOMO) is a funny old beast. It creeps into your head and convinces you that you’re not needed, not wanted — and most of the time it’s right. You are missing out.
To be sidelined for a few days isn’t the worst thing I’ll face this year, but it still leaves me low. My mind works in strange ways. Why should I feel jealous of family going to a funeral? But I do. I’ve missed out on so much this year, and when you add in the costs, there’s a lot lost to this illness.
Maybe I need to raise this when I see the GP on Thursday for my cancer care review (QoF). I don’t fully understand what it’s meant to cover, but I know what matters to me.
Are my current meds really the best ones for me right now? Can we talk about the side effects — pain, fatigue, nausea, sleep? What should I do if things suddenly get worse?
And then there’s the other side of it all — the mental health part. Can I get some proper support for depression or low mood? Is there counselling nearby, or someone I can talk to when I feel completely overwhelmed?
I’d also like to know who my main contact actually is. Do I ring the GP or the hospital when I’m unsure? Who joins the dots between all the teams?
And finally — the practical stuff. Fatigue, sleep, diet, exercise. Could I see a physio, or a dietitian? And what about money — is there any advice on benefits or work adjustments? £500 a month statutory sick pay doesn’t go far, and being told to “look after yourself” is fine, but only if you can afford to do it.
That’s where my head is. I worry the whole meeting could still just be another drug review and little else, but if I can walk away with a plan — maybe even a way back to work one day — I think I’d feel lighter.
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Today I was once again tired. Properly tired. The rib-side pain meant increasing the oral meds and they left me half-comatose, eyes heavy, chair-bound all day. I worry about the drugs overtaking me before I’m ready for them. Nobody wants to be doped up and out of it until the very last stretch, and yet here’s a reminder of what’s to come. A terrible reminder.
Tomorrow it’s the postponed tooth filling. My Darling will take me there and back, but the thought of it makes me queasy — probably not helped by three days without a bowel movement. Bloated, uncomfortable, tired. Eating doesn’t help, but my appetite refuses to play along. The whole cycle — guts, meds, mood — is wearing me down.
Still, I keep looking at the forum. Good news there lifts me, even if it’s not my own. When others are struggling, I do what I can to nudge a little comfort their way. Hypocritical maybe, but I try.
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Maybe tomorrow I’ll sneak in a haircut after the filling. That might cheer me up. Not that I’ve got too much left to cut, ha-ha.
The bus route is boring today. Dreary, flat, endless. I’ll be glad to get to the end of this leg of the journey.
If I can stay awake, I’ll watch a drama later and escape from myself for a while.
Still here. Still on the bus. Hoping for a smoother road tomorrow.
