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.
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!
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!
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!
2017… a new year, a new fight begins.
To first summarise phase one of chemo; it started great – no side effects, plenty of energy, and still enough in the tank to train. This last part was key for me, as running and training gave me more energy to withstand the chemo and balance out the effects it had on my body, such as lethargy, blood circulation and mental determination.
But the doctors warned me it’d get tougher, and it did. Not necessarily more side effects, but a chesty cold in cycle three stopped me training, which reduced my energy levels, and gave the chemo the edge… vicious circle. So in the later weeks I was on a lower ebb, without the strength I’d started.
But the #startstrongfinishstronger mentality kicked back in at the end. My last week before Christmas was recovery week. I worked from home on Monday (still full of cold) and went into the office on Tuesday and Wednesday, and it was a busy three days! It felt fantastic to be back at it, super productive and I got some great feedback (unrelated to being ill) about the work I was delivering. It just felt great. And on my last day before Christmas, I even managed a training session – if you could call it that?! I started with some basic stretched (which felt like oiling a rusty chain, I could hardly even move my neck from side-to-side or bend from the waist!) And my trainer was standing next to me with tissues in hand, as my streaming nose was dripping on the mat on front of me! At that point I felt totally pathetic and momentarily disheartened at just how quickly I’d lost all my strength and flexibility, six months hard work over the summer, gone in two bad weeks of chemo. The speed with which this shit kills you is frightening. But my trainer reminded me that it’s killing my cancer that fast too, and we can and will work hard to rebuild my strength. With that I picked up, and by the end of the hour I was not only doing 30-second planks and full sit-ups, but hip lifts with a 12kg dumbbell – still nothing compared to where I was eight weeks before but a whole lot more than I was doing an hour before! So I finished the hour, the day, the week and phase one strong – winner!
So what’s still to come?
Phase one was chemo (AC)
Phase two is chemo (TC) – this starts now
Phase three is surgery (to remove what’s left after chemo)
Phase four is radio (to stop it coming back)
So we’re a quarter os the way through already! Woo hoo! And a few other bits to note;
- Over Christmas my hair started to grow back! It’s not much, and is probably because I’ve had a week of chemo. It’ll probably go again during phase two of chemo, but it’s reassuring to see it grows back so fast.
- Before Christmas I had a DNA test, the results of which come in a few weeks. This will tell us if I have a genetic mutation (doctor’s description, not mine – sounds like something off Total Recall!) causing the cancer. If so, I may opt to have a double mastectomy and ovary removal to reduce risk of getting it again. The doctor estimated about a 10% chance of this being positive, so with pretty good odds, I’m hoping for a bit of luck on this one! We’ll know more towards the end of the month.
- Tomorrow I have a second MRI scan. This will show the change in my tumour since the first MRI in October (ie what impact the first phase of chemo has had). Obviously I’m hoping this to show it has shrunk! I’ll have another MRI after the second phase of chemo, and that (with the DNA results) will ultimately determine what surgery I have. but this second MRI will give us an indication of how it’s going, so I’m keen to see it. MRI results should come through in a few days’ time.
So the next fight starts now. Chemo two started yesterday, and this will be four cycles long (12 weeks). Each cycle will last three weeks (21 days) and I’ll have treatment on the first two Mondays (days 1 and 8) then recover in week three. So far so good… but I’ll let the video below tell the rest…