The Tide is High

Day 98

General status update:  

Nausea demon: He didn’t wake me up until 5am this morning, which was an improvement.

Chemo Muse: As we are on extra steroids this cycle (see below), she deemed it time to restart my exercise programme this morning - “Mens sana in corpore sano! You’ll write so much better if you get your body moving again as well as your brain! We can do BOTH!” – and sent me off at 7.30 am for a 4 mile walk along the Thames Towpath to Barnes Bridge and back, the first time I’ve done the whole walk since my surgery in October. The tide was high, the rowers were out in force – it’s Boat Race day in 2 weeks’ time – and it was so great to be out there in the fresh air with all the other early morning walkers and runners: another step towards the land of the living, and away from the land of the dying.

Chemo Brian: He says he’ll be waiting for me on the sofa when the energy crash comes later on today.

Despair Demon: still locked up in the airing cupboard; there’s nothing he can do to combat the awesome strength of the continuing steroid power surge.

PICC line (deceased): may it rest in peace, in whatever graveyard of medical waste it has now been consigned to. Maybe I should have brought it home and given it a proper burial on Brook Green - it was part of my body for 14 weeks, after all. Or kept it in a jar. Ah well, too late now.

State of mind: I am the Chemo Muse, the Chemo Muse is me. We have The Power: we are the Queens of Dexamethasone.

Anxiety level (1-10): anxiety? About WHAT?

Hair: It’s been exceptionally shiny throughout the whole first 14 weeks of chemo, but now I think it’s also starting to glow in the dark. Not sure whether to be worried or not.

It’s day 4 of  my fifth cycle of the FEC chemo regimen; normally, this is the day after I finish taking the steroid drug, Dexamethasone, which has a strong protective effect against the worst ravages of the chemotherapy drugs, and it’s the day when things start to get really bad. This time round, though, I’m still on the Dexys and feeling remarkably chirpy. This is how it happened…

Last Friday morning (day 2 of the cycle, steroids on full power) our cleaner, Roma, arrived at the flat to find me in a burst of manic hyperactivity, and talking very fast:

‘HelloRoma,it’sgoodtoseeyou,yesIhadthechemoyesterdaybutI’mfeelingjustFINE’cosI’vegotsteroidsfor2daysandguesswhatI’vedonealreadythismorningI’vecompletelyreorganisedthekitchencupboardssothatstuffdoesn’tfalloutanymorewhenyouopenthemandI’vedonealltherecyclingand…’

‘There’s something I’ve been meaning to ask you, Caroline’ said Roma.

‘Why do they only give you the steroid tablets for 2 days after the chemo, when the bad side effects go on for 8 or 9 days? When the steroids stop you have a big crash and then you have a very bad time for a week – why can’t they give you the steroids for longer, when the side effects make you suffer so much?’

This stopped me in my tracks.

‘Well, I asked the oncologist if I might have them for longer, but she said they are very strong, and also have side effects, and you shouldn’t take them too long, and if you have more then you just get the crash later on..’

‘Yes, but if you took them for longer, the chemo drugs would have had more time to go through your system by the time you stopped taking them, wouldn’t they? So the crash wouldn’t be so bad. And it’s not like you’d be taking them for weeks or months – just a few extra days. I’ve seen how bad you get after the steroids stop – surely a few more days of them would do you more good than harm?’

Roma, who doesn’t have a medical degree but does have a great deal of common sense, was making a very good point. A lot of people don’t tolerate steroids very well – one of my Cyber Chemo Buddies had to stop taking them as they were giving her hallucinations – but I absolutely thrive on them, which has done something to compensate for the extremely bad adverse reactions I have had to virtually every other drug that has been pumped into me for the last 6 months. If they work so well for me, why shouldn’t I take them for a few more days to protect me while the chemotherapy drugs are doing their worst to my body?

It was definitely worth revisiting this issue, and as I was going back to the hospital that morning to receive my immune system-boosting injection, I decided to take it up with Matron Becky. Becky agreed that given my very high level of sensitivity to the steroids, and their strength, having a full dose for 3 days and then stopping dead was bound to result in a big crash, and she was surprised that I wasn’t already being given a half dose for the next couple of days to taper off the steroids gently.

She brought in the on-duty doctor at the chemo ward, who listened to my tale of 3 days of the Joy of Dexamethasone followed by a week of FEC Side Effect Hell, and she said ‘Fine. If the steroids work for you, and that’s what you need, I don’t see why you shouldn’t have it – I’ll just have to run it by the oncology registrar.’ Five minutes later she was back with a Dexamethasone prescription which gives me the full dose for a further 2 days (days 4-5 of the chemo cycle), a half dose for the next 3 days (days 6-8 of the cycle) and a quarter dose for the following 3 days (days 9-11) of the cycle.

You have absolutely no idea how happy this makes me although, if you’re a regular reader who has accompanied me through the wailing and weeping and bitter howls of anguish of the first four cycles of FEC Side Effect Hell, you may well have a bit of an inkling. In the previous cycles, during the very worst days - i.e. days 4-8  - I have been in a truly wretched state, unable to do very much at all except endure, and want to die, and wonder why I ever agreed to have chemo at all. Today it’s day 4 and, still on the Dexys, I went for a two hour walk this morning, have spent a couple of hours writing, and am still full of energy. The nausea was bad early this morning, but it’s now quite tolerable.

So we’ll see how this experiment proceeds, if I suffer side effects from the steroids by taking them for longer, but for the moment it’s working just fine.

Today should have been a day of FEC Hell, and hasn’t been.

This solution wouldn’t fit everyone: as with all these drugs, everyone responds differently according to their own genetic makeup, but I’ve written about it in detail to underline the point for anyone facing chemo after me that in this situation you have to find out what works for you, and then ask for it. It’s so easy simply to accept the standard routine which, inevitably, is ‘one size fits all’ approach – no one can predict individual reactions either to the chemotherapy drugs, or to the drugs prescribed to help with the side effects.

It’s also so easy to take no for an answer, as I did when I first brought this up with the oncologist weeks ago; she said no, I couldn’t have any more steroids, and I accepted it. It took Roma’s observation of the horror of my bad days, and her questioning just why I had to keep on suffering like that when the steroids clearly helped me so much, to make me go back and try again.

Thank you Roma, and thank you again, Matron Becky, for helping me see how to make things better.

And if I start suffering from the legendary ‘Roid Rage’ then I promise to hold neither of you responsible, though I can’t speak for R, obvs…