Hello there world! The fog has lifted and I am back in the land of the not chemohungover. I was back yesterday, but the wine test went on a bit longer than planned, then I fell asleep. The wine test determines whether the fog has truly lifted, or it’s just a brief break in the clouds. It’s really a sniff test, the result of which is either a stomach lurch or a general sense of “Ooooo, wine…hurrah”. I can rarely stop at a sniff if the latter happens. I’ve never actually tried.
Despite the feeling shitty bit, it’s been a good week. I’ve had deliveries of food, wine, cake, chocolate and various other goodies. Surprise gift deliveries, not Ocado and Amazon Prime. OK, Asda, not Ocado. Which reminds me, Asda have this click and collect bay where you pick up your online shop. You wave that squiggly square thing in your confirmation text at the machine and bugger all happens. So you type in the confirmation number and bugger all happens again. You press the button to speak to someone, and neither of you can hear wtf the other is saying. You stomp into the shop and ask someone to bring out your order. It’s excellent, every bit as frustrating as actually doing the shopping yourself but none of the impulse buys. The man in the next click and collect bay was made of sterner stuff. His wife had told him to collect the shopping on his way home since he was passing Asda anyway. I know this because he had the call routed through the car and it was very loud. He got through the squiggly pattern scanner, the order no., and the shouting into the machine, and his shopping was brought to him, happily the car phone system allowed him to carry on being sarcastic to his wife. I was quite sad that she couldn’t see that he was lying his ass off and had not emptied the boot, he was frantically packing packets of pasta and loaves of bread around all the crap she’d told him to move. I think the state of the bread might have given him away once he was home. You don’t get that sort of entertainment with an Ocado delivery.
Today I had an ecg. One of the meds I’m about to start can temporarily damage your heart (did I mention that I am a complete believer in the Ostrich approach to side effects?), so ecg’s are going to be a thing for a while. The only blip was when she asked me to turn over and I slid off the edge of the very narrow bench, I think it’s ok if your heart beats a bit faster when that happens. Also, an 8:40 am appointment when you have two kids to get to school for 8:35?!? My heart is functioning efficiently and I have a low resting HR. Hah, that’s the HR of anyone who has got their kids to school ON TIME, good job I wasn’t hooked up to a monitor in the previous hour. At 8:40 it’s not so much resting as completely fucking exhausted. Then I saw my oncologist who told me I looked amazing and really suit being bald. This is all on the NHS, life saving and ego boosting. I love our NHS. I mentioned my hatred of the rubber teeth injections, and we can reduce them a little since my immune system is holding steady. I wished I’d taken her flowers, or chocolates, or both. Not wine, I rarely give wine away.
So, the Stop thing. The Waiting Room. Full of people who are in some stage of being treated for cancer, and you just don’t know which ones are the nuts. You just know there are nuts. One lady was practically vibrating, you could see the fear. I had my usual moan about the heat and opened the window and she grinned, so I knew she wasn’t a nut. She nodded to my shiny head and asked if she could ask me about my treatment. What a legend of a woman, asking if it’s ok to ask when she’s so scared you can feel it. I said yes and she asked and I answered. Her questions were respectful and I was careful to emphasise that everyone’s experience is individual. There’s no way to know how your system will react, but it’s not necessarily going to be as bad as you hear. Wait and see, so hard to do but far healthier than focusing on everything that could happen.
The only bit of advice I was definite on was to manage what info she allows other people to give her. Manage the nuts. The people who, on hearing you have cancer, want to tell you all the horror stories. The side effects they experienced, the relatives who didn’t make it, the complications and residual effects. The people who relieve their stress by passing it to you. Don’t be afraid to say “STOP, I don’t want that information just now. If I do I will ask my medical team or a trusted friend. Don’t give me your worries, I have enough going on just now”
The lady left, I think I did OK as she said she hoped she’d see me on the ward and we could maybe laugh a bit whilst getting on with getting on.
That’s when the nut piped up, she’d been sat in the corner listening. “I’m a bit further down the line than you and………”, she went on to list the side effects I have coming, the risks of re-occurrence and the fear of that happening, her worries and fears and how I would feel the same. She dumped the whole bloody lot in my lap. I’m going to spend the weekend practising my resting bitch face with my eldest son, he’s 13 and is a MASTER at it, because I think mine must be failing. It used to be excellent, maybe my thinning eyebrows are the problem and they’re not conveying the WTF that my brain is thinking.
If that doesn’t work I need to find the new lady and say we’re no longer going with “STOP”, we’re going with “Shut the fuck up”.