It’s amazing to finally be home. To be able to drink water without asking for it to be dispensed to me first (and I drink a LOT of water), to sleep through the night without being woken for observations, or to be woken up for antibiotics that then shouts an alarm at you after half an hour and then again after the flush finishes after another half an hour. And to finally have a BATH and run on my own schedule.
On the day I left hospital, the Oncologist told me that my platelets hadn’t bounced back up much. Even with the transfusion. They went from 44, up to 45, which is low (normal range is 150 and up). Clearly my body just needs its time. And as a result, we would be putting chemo off for a week. This is normal enough. My wonderful friend who has trail-blazed the way for me, and already had I/E (this regime) said every single cycle was delayed for her. I’ve had delays in the past too. I’m not worried about this.
But it’s been hard to make it happen. First they told me it would start on the 27th, and that was easy enough, the friend who was originally going to come with me next week was able to change to that week instead. Great. Though thanks to scheduling issues (public holidays), it turned out I couldn’t start again until the 29th. Which meant I had to find someone else who wasn’t away, and didn’t already have grand plans for New Years Eve, and was happy to move in with me for a few days. I was getting ready to say I couldn’t have chemo because I couldn’t find someone. It feels wild that these are the conditions to have the treatment I need. But thankfully, it didn’t take me long to find someone. The first friend I thought of and asked said yes immediately. My friends are truly my heroes. My wonderful friend Shiri (who’s been there with me since the start) and I are now planning our sleepover and quiet New Years Eve of movies and a takeaway.
The other thing he said is that clearly 5 days of chemo isn’t working for me, so we would be knocking it back to just 4 days each time. When they originally told us (me and Rosa) about the chemo, they said they sometimes do it with only 3 days, or 4 days, depending on how each person is able to tolerate it. And with it knocking me around this much from the first cycle, it was only going to get worse, and my poor body, already suffered through so much, would crumple before we even managed to get to the end.
So the decision has been made to only have four days of chemo each time. That’s 20% less chemo. Part of me worries about that. What if it works some, but not enough, and it’s because we were too cautious. How can we be cutting back on the one thing that’s got a chance of saving me? Surely I need it all. And then some. Give me 20 days. Give me a thousand days, I can take it, I’ll find a way.
But the reality is that I can’t.
These thoughts are real, and yes, cutting back on chemo is scary. But the whole point of these intense chemo regimes is to vary it to each person so that everyone is getting the amount that’s right for them. I doubt I could actually make it to the end if we kept going full guns blazing. If it’s like this at cycle 1, my body will have fallen apart by cycle 5. We need to reassess. Also, it’s clearly having an effect on me, which hopefully means it’s having an effect on the cancer. Having less in order to mean I can keep having it, without completely ruining myself in the process sounds like a good idea. The doctors think it’s a good idea. And my original Oncologist mentioned it to me up front (cutting back a day or two) because he suspected this would happen. So while it’s not the ideal, given the circumstances, it’s what needs to happen. I’m still getting a lot of chemo, and if it works it works. A day less won’t change that.
So now I get a lovely little holiday. A blessing in disguise. It means I can celebrate Christmas – even if it’s just on my own, I’ll get to eat nice food and get out for a walk. I won’t have to spend it wondering if my temperature is high enough that I should be rushing to A&E. I get enough time at home to get a couple of things I need delivered, to wash my clothes, and to take myself out to brunch and maybe to get my nails done (part of my wonderful birthday present from Rosa). I feel good, so I can make the most of it. It’ll be a very quiet ‘making the most of it’, Covid is a real threat and I can’t risk getting it, but I will see my friend Sam and I will go for some walks (though it’s so cold out there!) and enjoy some time in my lovely little flat. And fuel and take care of my lovely little body, which will need all the help it can get for the next round.