Well I’m back in for chemo this week, all my bloods had come out good and ready to go.
They’ve decided to knock me back to just three days though. Which was pretty scary to think I’ll only be getting 60% of my chemo each week. But a talk with the Oncologist made me feel better about it. He sees risk in attacking my body too much now, but hardly any risk with knocking it back to three days if there’s a chance I will tolerate it better. With a chemo that isn’t at all tailored to the person (and I’m a fairly little person) it’s normal to vary the dose, he told me. He says of their years of working with this and studying it, they’ve realised that 3/4/5 days makes little difference, if less of it is doing the job, which it clearly is with me, since it effects me so much as to give me neutropenia (which is what lands me in hospital) and thrombocytopenia (which is really low platelet count). The low platelets seems to worry them, though it feels like routine to me. They were saying it was worryingly low last hospital admission – 15. I told them proudly it had gone down to 5 at one point, 4 years ago. They looked at me in shock.
He likened it to a jumper – we can give a medium size to everyone, but it won’t fit everyone. Some need small and some need large and that’s ok too. I held back from pointing out that in general, people probably won’t die much quicker without the jumpers, but I got his point. If three days works, then giving more won’t do more, and might in fact damage me more in the process. It’s just hard when we have no idea if three days does work. But probably all those previously mentioned the side effects is probably showing that it is doing all it can.
Three days, though. That feels so easy. Only two nights in the Cotton Rooms before I go back to my own bed and bath. My worry was soon replaced with relief. We have a new plan, I’m on it.
I’ve got to go in for a PET Scan on Saturday though. It’s been ordered through a private practice, not at the hospital, in order to get it done ‘urgently’. I suppose with the massive influx of new patients getting diagnosed now the world is up and running again, some extra facilities were needed. I’m trying not to think that the ‘urgent’ PET Scan is any response to my last MRI and rather more of a case of the waiting times being months away and they really want a mid-chemo PET scan as well. I want that too. Let’s do it. I figured I was still in treatment on Saturday last time, so I’ll stack the scan up then. Not exactly what I want to spend my post chemo Saturday doing, but glad to get it done and back to waiting for day 9 to see if I need to rush to A&E.
I now have to wear an eyepatch everywhere, which is interesting. Got myself some pirate boots, which everyone seems to comment on and love. My Oncologist even noted how well I’m styling it out. Well, it’s a shit situation that I would rather not be in, but since I’ve got to, I’m going to find some way to be in control and make the most of it. And I’ve got some brilliant eye patch wearers as inspiration (Bowie, for a time, and High King Margo from the Magicians). I’m making it a vibe.
6 Comments Add yours
You’re rocking that pirate look. Good luck with the 3 day regimen and PET scan. We’re rooting for you!
Hi Jen, it;s really nice to come back from a nice walk and find your latest bullettin waiting for me. I guess the doctors all know what they are doing ,with their reccommendations re your scans. I look forward as you do ,to the outcome of your forthcoming PET scan. I hope the results are good. I will call you in the next day or two, for a chat. Take great care. Love, John xxx
Check out Gabrielle a 90s UK singer who also rocked an eye patch. 5 is low for platelets. My daughter was at 12 this week. 2 transfusions and back to school. Your blog is so clear and is weirdly comforting when it really shouldn’t be. Shows how messed up this cancer world is. Keep writing please.
Hi Jen. I love the phote of you with your eye patch. It ‘s good to hear from you again. I look forward to the results of your PET scan when it comes up. Hope fu;;y without delay. I,m sure you,ve noticed that the days are getting longer now . Another month and we will be looking forward to Spring. I will call you in the next day or two. Take great care, John xxx
If we lived in the same country I would buy you a parrot. Nothing says pirate like a parrot riding on your shoulder!
Love the idea of the boots, that is a good idea.