Most of us are far more resilient than we ever thought, but it's not often it's truly tested. Waiting for a friend who's always late is not testing your resilience.......... waiting a month to get a horrible treatment started, knowing it puts you further down the path to finishing the horrible treatments....... that's testing your resilience. Thankfully the resilience held, and I'm back on track.
I have been warned that this will probably happen again. Treatment will be delayed. Doses may be adjusted, timescales may change. I doubt it'll ever be as stressful again though. I'll now go into each treatment period with no expectations. No gung ho, 'bring it on'...... more of a 'hopefully. Well see'.
I was always big on structure. Routine. It's really hard to let go of that when it's how you've always lived. I like clear instructions and set timescales. Doesn't work like that now girl........ Learn to go with the flow, or prepare to be caught in the riptide..... So I'm continuing to learn. I can look after myself in terms of food and exercise, I do what I'm told with the medications, but other than that it's not in my control. I can't change my blood counts, but I can ensure I don't have (or just manage!) a small meltdown every time there's a hitch. I would love to have set dates for chemo. I'd love to know the date of my final cycle and have something special planned.
Instead I'm learning how to not worry about definite dates and how to ask for help...... which most are always willing to give...... nurses who'll get bloods to labs early so results can be relayed quickly to ensure no wasted flights for my sister, receptionists who'll check about moving scan times so it saves two journeys. These are the small but massive things. The things that can make or break your days. Just people listening, understanding, and making a bit of extra effort. I think I was like that in my job, and I'll certainly make sure I am when I get back!
My nice, new PICC line has received much nurse adoration! It seems it was beautifully fitted, and I will be sure to beautifully maintain it along with my District Nurse. At the risk of scudding....... it has been so much easier so far. Bloods are taken in seconds, chemo given, and it can even be used for dye for future scans. Removes what had become the agony of vein finding...... No more Gone Digging! Dug once, really deep, put a flag in the hole! An ace up my sleeve! An almost guaranteed good hand dealt every time .
Scan results were as underwhelming as I'd been told they would be. They show what has been done to me. A line in the sand for future scans..... it's not active, it's just getting treated. I'd imagine the most difficult thing for the medical experts is that they don't know what it looked like before it went mental! We only know what it looked like when very angry and having given me a seizure, but had been settled with medication....... So I guess it's difficult at this stage to do anything but measure if treatment is doing what's expected; which it is. We knew from the first day that it wasn't going away completely. I still can't really believe that, but I know it's the facts. The aim was always to get it under control, the way it was before it got angry. Burn back. As far back to the start as possible. Long term maintenance....... hopefully years, perhaps decades. Prognosis remains the same...... no timescales, no reason my life can't go back to normal (although I don't think 'normal' will ever look quite the same for any of us!)
So the scan shows radiotherapy swelling and...... wait for it.......here's a phrase you'll never forget........ surgical cavities. Surgical cavities???? There's a phrase and a half.....!! A properly empty head!! Essentially brain holes...... but on this ocassion brain holes are better than tumour, so I'll take the empty head, thanks. Now we get to see the brain holes get filled with newly grown brain! I could end up with so much brain, I'll be like Einstein!! The more good cells get in there, the less room there is for the bad cells. The bad cells are already hopefully struggling with the chemo....... I'm almost excited about the next scan....... it's like watching an epic battle. My imagination conjures up the final scenes of the Harry Potter films....... battle has commenced, and hopefully the self destruction by obliteration will continue!
I did ask about whether the treatment would just make it angry, like we'd poked a wasps' nest and it'd come back twice as angry..... but was thankfully reassured that's not how it works. Hopefully we didn't poke the nest, we used a great big flame thrower on it and hopefully its shrivelling up and shrinks a bit more every day. In the meantime a lovely, happy queen honey bee is eyeing up a potential new home for its hive of good cells, and there's plenty of cavities for her to choose from!!
"I write because I don't know what I think until I read what I say"
Flannery O'Connor
What a quote! Xxx
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