Post 30: Still mostly in the dark.
Vital statistics:
Temp: 36.4 perfect 
BP: 136/87/50
Mood: rising 
Anything else: Flatulence Activated Release Technique (FART) 
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“Mr U is cancelled” is becoming a soundbite that’s hanging around like a bad smell. I’m staying positive—and in the end, if you don’t laugh, you cry.
Speaking of bad smells and laughter: last night when My Darling and I went to bed, I had occasion to make an involuntary fart. Apologies for the toilet humour coming up; skip the next paragraph if you’re easily offended.
Anyway, as I said—I trumped. Two things happened in quick succession after the rather worrying noise. I started laughing uncontrollably, and the smell caused both our noses to wrinkle a bit… okay, a lot. The worst part? We couldn’t stop giggling, which triggered even more trumps. That led to more laughter. I lay there ashamed but completely overtaken with joy—like a naughty schoolboy.
They say laughter is the best medicine—and I’m sure it is. However, the eau de toilet was horrendous.
I blame the two litres of water I forced down. I think it’s my body’s way of shouting for help!
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My Darling read yesterday’s blog and caught up with the cancellation I mentioned in the opening line today. I was right to let her find out this way. It’s annoying, but there’s little we can do but wait.
She’s off to The Repair Shop early this morning to get her fingernails glammed up. Once again, I put some cash in her hand and waved goodbye, knowing this uplifting therapy will boost her spirits. I’ll tell you later what colour she went for, but it’s usually something subdued due to her work’s restrictions.
Before she left, she brought me the first glass of today’s water quota. Harrumph!
Do I really need two litres?
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If I’m sedentary at the minute, surely my water intake should be less than if I were walking two miles a day like I was a couple of weeks ago?
I found it impossible to drink the full amount yesterday—my belly is bulging like I’m six months pregnant—but my pee is totally clear, so I might bribe my nurse and negotiate a reduced introductory rate with time off for good behaviour.
Maybe when I’m cleared to return to light exercise, I’ll ramp up to the full two litres. I just don’t like the feeling of being that full; it’s putting me off my biscuits. Sorry, My Darling.
I start the new tablets in a couple of days, and the pharmacist has already called to make sure I’ve read the long list of dos and don’ts for Apixaban.
The basics: take it regularly, twice a day. No ibuprofen or aspirin now. Keep the “I’m taking anticoagulants” card with you at all times.
Also, watch out for cuts and bangs to the head. Other than that, you’re good to go.
Ibuprofen and aspirin being a no-go was new to me, but the rest I knew. Mum was on warfarin for decades due to DVTs, so I know the ropes.
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It feels like the walls are creeping in more every day since the lung clots. My CHADS-VASc score (heart health rating) is now 2 (up from zero), which probably means I’ll be on anticoagulants for life from now on.
It’s just another factor to manage in the daily mental health balance—ranging from negative to positive, with what feels like a thousand graduations. The pointer moves with every conversation, every thought, every burst of laughter or tears.
Minute by minute, things change. I’m moody. I don’t want to be moody, but that’s one of the biggest side effects of having cancer. Being brave is part of staying sane, but you can’t prevent the lows from happening.
All the avoidance tactics and distractions in the world can’t fully stop the dips.
I’m not overly worried today, but I still reflect on my situation and feel a bit hard done by.
Nature is taking its course, and I’m stuck in limbo.
My Darling will be back soon with her new nails to cheer me up with her stories and hugs. It’s not so bad, really.
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Lifting my mood even more: I received a text from my sister-in-law after reading yesterday’s blog. She told me Little Bro has finally heeded the warnings—his wife’s and mine—and booked a GP appointment for a prostate check.
That’s great news. I’m wishing him a clean bill of health. Good luck, Little Bro.
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I’m lying in bed thinking I should be chasing the echo appointment… but really, I shouldn’t. The system is primed. Chasing might just make me a nuisance.
Then My Darling came home from the nail bar with beautifully pink-natural nails and a happy smile.
Just after that, I got a call from Em, my first cancer nurse. She already knew how I was doing and got straight to the point:
“Ask PALS for help if you’re getting nowhere with your appointments. Get on the phone to each department. Keep pushing. And ask the oncologist whether Carboplatin is right for your body—especially after that PE reaction.”
I thanked her as we ended the call and got to work.
Long story short: after battling with the oncology department’s three answerphones, I sent a stern but fair email with my main questions.
Meanwhile, cardiology came through. A very proactive Sophie not only promised to get the echo form triaged, but she actually rang back with an update—just like she said she would.
And now I have an echocardiogram appointment next Thursday.
She mentioned in passing that the original form from two weeks ago had not been filled out properly.
Good job I sorted that out a few days ago then.
Phew.
I still await a response from oncology.
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My thoughts on today’s events?
• Thankfully, friends and family give you more support than you realise.
• If you don’t ask, you don’t get.
• Always assume your referral might be incomplete or lost in the NHS system—so get off your bum, and check for yourself. Then check again. And again.
I need a breath of fresh air after all that office work.
But I’ll see what My Darling’s doing first… maybe she’s up for a cuddle.
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Frustration lifting a little.
Seven sleeps till the echo.
Asking questions. Wanting answers.
I’m still mostly in the dark.
