21. Not quite what we’d expected

My mum always said I asked too many questions. My brother was her ‘how’ and I was her ‘why’, and I think my Oncology nurse is now starting to regret the words “if you have any questions…” 

Today is chemo two, cycle one, day nine (far too complicated – seriously considering introducing a 2.1.9 type system here) and I feel great, despite getting some pretty disappointing news yesterday, which could have quite big consequences. But I’ll come back to that.

Before Christmas, the docs told me that chemo two would be easier than chemo one. So maybe I went into last Monday’s first session on the new drugs a little complacent? But the ‘easier’ chemo turned out to be horrible.

Monday was fine, Tuesday was ok but I started to flag in the evening and took myself off to bed. On Wednesday, I had to be up at a time my body no longer recognises, to get to hospital for my MRI at 8:30. I’ve no idea how I got there and back. In a daze, dragging my feet, just doing as I was told… “put on this gown, remove your jewellery, hold out your arm for the IV, lie on your front, listen to the music, it’ll sound a bit loud, squeeze this ball if you feel nervous or claustrophobic…” (and yes, I fell asleep again, much to the amusement of the nurses). After the MRI, I got back in the car, drove home and went straight back to bed. Thursday and Friday I didn’t leave the house. I got as far as the couch, watched some TV, felt sick, ached from head to toe, and started to worry that, if this was just the first treatment of the ‘easier’ chemo, what on earth was the rest going to be like?!

The worse I felt, the more I thought. And the more I thought, the more questions I had. So of course, I needed a list…

  • If people usually have TC chemo once every three weeks, why am I having it twice, when my body is clearly not at full strength? Am I having it in two half doses? Do they think I’m still strong enough to take it?
  • I’m taking less anti-sickness drugs now, but can we up these if I’m feeling sick?
  • My treatment plan has no blood tests scheduled, so how are they planning to keep an eye on my blood levels to make sure my red blood cell count doesn’t continue to drop? Am I ok to take the extra tablets I’ve been taking to boost my iron and folic acid?
  • I’ve received a letter with a yellow exclamation mark sticker on it but Google translate was stumped. What’s it for? Do I need to do anything?
  • Why are my hands looking like my grandmother’s? They said I’d lose the feeling in my fingertips in chemo two, but I hadn’t even started that yet?
  • And do they have the results of my MRI yet?…

So, list in hand, I went into hospital yesterday and went to see my nurse before chemo. And she was great – answered all my questions, explained that they’re not trying to force too much on my body, week one wasn’t indicative of what was left to come (“You’re still recovering from eight weeks’ intensive chemo, remember?!”), week two is just a top-up, not another full hit, and yes they’ll still be monitoring my bloods regularly. Jolly good.

So that just left the MRI results. I’m not sure if I left this to last as it’s the billion dollar question? Or whether I knew I wouldn’t forget it, so cleared up the other questions first? But eventually I had to ask.

Unfortunately, the answer wasn’t what we were hoping for. Has my tumour shrunk following chemo one? No, it hasn’t.

mri2

Now there could be several reasons for this. My first MRI was on September 29th, I then had a month before starting my chemo (in which time it could have continued to grow and been bigger than the MRI scan by the time I started treatment), so the chemo could have shrunk it but the scans would have looked the same. Alternatively, it could be that the chemo has stopped it growing, so although it hasn’t got smaller, it hasn’t got any bigger either. Either options is still an achievement, so whilst not the news I’d hoped to hear, I wasn’t disheartened.

So what now?

On Thursday, my Oncologist, Surgeon and Radiologist will meet to review the results and agree what to do next. I’ll then go in on Friday to see what they think. The likelihood is that my current plan will continue – even if the AC chemo didn’t work, I’ve already switched to a different combination of drugs (TC), so that may still have an impact. The only possible addition to the plan could be an extra MRI half way through chemo two to check progress (rather than just waiting until the end). If this shows no progress, then we may rethink.

And how do I feel?

Flipping marvellous! The MRI wasn’t what we’d hoped for, but I can’t change that. What I can do is nail chemo two the same way I did chemo one, and fight like hell to kill this thing!

chemo-coordination

So yesterday I went into the second week of  chemo two feeling strong again. In full coral colour coordination (nails, sweater and sneakers) I plugged in, got my fix and came out fine.

This morning I woke up feeling awesome – no nausea, no tiredness, no fatigue, not even a running nose or watering eyes! Taking full advantage of the latter, I put on eye make-up for the first time in weeks and went out for lunch with Em (who’s over from the UK to look after me this week). We befriended a random old man on the Ij ferry, went clothes shopping, finally collected my dry cleaning from three weeks ago, bought super healthy salads for tea, and came home for a movie night with popcorn. Bliss!

whatsapp-image-2017-01-10-at-21-51-50

I know things generally get worse during chemo week before they improve, but I really feel better today than I have in a long time. I’ve been working yesterday and today and plan to be in the office next week. I’ve booked a training session for Tuesday, and if I’m strong enough, may even squeeze in a second later in the week.

So bring it on, chemo two – do your worst. And watch your back, tumour – we’ve changed formation and are coming back at ya!

#setbacknotastepback
#comebackfighting
#startstrongfinishstronger

#BoxyOut

 

5 thoughts on “21. Not quite what we’d expected

  1. Good perspective on the size (and open minded, responding instead of reacting), that’s the way!
    Hangin’ in here after reading my surgeon the riot act! But already looking at next options…..inspiration-I’m counting on you to keep the faith. Xoxo

    Like

  2. Last week was one of your speed bumps lovely girl. It’s another week on & getting stronger & raising 2 fingers to cancer!!! As Dreyfus said …. every day in every way I’m getting better & better! 💝💝💝

    Like

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