I'm doing OK today. In fact I was doing OK from bang on 10am yesterday when my BFF arrived from France. When I was there in June, she knew. She knew I knew. I knew what she knew. We didn't talk about it. I simply said "If I can just sort this pain out, I'll be OK". It's not sorted of course, after realising I had my patch on for a mostly sofa confined week the pain was back last night despite new patch because - wait for it - I walked round Asda. Seriously, oh and sat in the hospital for an hour or so (line flush).
A whole week to recover from just the first dose of Evil Irene? Obviously my dose needs reviewing since I've only managed one week since May/June where I've not lost weight. At some point the change will be enough to warrant a "formula" dose change. I've spoken to the Sister on the chemo suite and we know the bolus drug I had on day 3 helped a lot (as did being taken off the 5FU) so perhaps will start on that and the Domperidone instead of Ondansetron (Bum Bandits and old followers will recognise these as Dom Perignon and Dance-a-thon). I also left a message for community nurse to get me some more Fresubin shake style drinks (blackcurrant and lemon & lime) which, despite my dietary preferences seem to be the ones I can drink when nauseous. I've tried a few over the last four years I can assure you! I've even bought some tinned oily fish - since I did 2.5 months of serious de-tox prior to chemo I think adding 3 (the chemo days) days of fish a week. My body desperately needs the protein and whilst I much prefer the taste, nutrition etc of other sources like green leaves and chick peas or quinoa etc a can of fish I can open, eat, collapse on sofa - much more likely to happen. Even the thought of my own cooking in the freezer made me feel ill last week (and that is a BAD sign in itself). I just need very very plain foods. I'm thinking mashed potatoes with flakes of a small tin of tuna and salad cream (spuds & salad cream - only food that worked when I was hurling 4 times a day when pregnant with twins).
So, I kind of have next week's plan of how to deal with Irene. Thing is, I don't think it's Irene making me sick, I think it's 5FPoo. But we'll blame Irene. Feel better about it already. I also have a freezer draw half full of fresh fruit ice cubes to suck on. Anything for fluids.
Bec's order of service is still on my mantel piece. Whilst staying alive and competent as long as possible is for my children - they are my only real reason for never giving up, no matter how bad things got - I see their faces, or remember their faces and more than once they've saved me from throwing it all in over the last 18 years. But Bec, who never stood a chance at even thinking of starting a family, who had less than 30 years of "normal" life, a wonderful husband, who gave up her free time to be a Samaritan and prison visitor (yes she really was THAT amazing), she's not here any more. It's not fair. It's not fair that I'm here and she's not. So as I promised Ol (Mr Bec) at her memorial service that I would do whatever I can to stay alive, we'd promised to do this together when we got our lung and liver mets news at the same time. When I couldn't drink water last week, I kept looking at her photo and taking another sip. When I felt like ripping the tubes out of my arm I remembered how much more pain she was in. When I realised a whole month had passed since we said goodbye I sent a message to Ol, because she can't. She's my guru. I don't know that she ever wanted that job, but she's got it.
I need to buy some nice photo frames today. Mine seem to have got broken slowly over the years and now I just have none. The photos of my babies are frameless and in drawers and that's awful. I look at them on the PC and I do have a digital frame, but there's something about a framed picture that's just better. I'll probably never get round to finishing decorating the living room (or any other room for that matter) but photos will help.
So today I had gluten free fruit bread toast (vegan marge) and tea (soy milk). My hair is super red again and Hayley is coming, oh crap, in 30 minutes and I'm sat in my dressing gown. We're off to lunch to eat ANYTHING. Oh and last night I ate a huge (5 portions) amount of salsa pretzels - in a desperate bid to gain some weight back. Maybe if I get on top of it I can reduce the amount of "dietary crap" I need to eat just to stay alive - because I KNOW that eating properly is my best ally in the long term, if only I can get over the sickness and anorexia. (That's anorexia in a medical sense, a side effect of whatever the cancer is spewing out and the drugs I'm on etc etc).
Aunty Susan just rang, I'm ready (almost), H is late thankfully. Three small kids she's hauled over the channel on her own just to make my birthday. She's leaving them for hours at a time for me.
(P.S. to Carole, Tony and Carole's mum - thanks for keeping an eye on me, I was just too weak to even use a computer for a couple of days, other than my phone. Tony I did read your awful news and I am so sorry. Liver alone - much better situation and highly treatable even if it's inoperable a first that is subject to change, I've seen it myself in many friends. Best of luck).
Weekend Reading, 7.22.18
8 hours ago