An unexpected truth

Day 79  

General status update

Stomach: complaining bitterly about the indignities heaped upon it for the last 10 weeks, and demanding to go into a Witness Protection Programme. It’s had enough.

Nausea demon: still doing horrible things to my stomach. He never gives up.

Chemo Muse: She’s met her match in the Despair Demon, and she doesn’t like him taking over her patch one little bit. Am hoping she will mount some kind of counter-attack, because I need help, badly.

Despair Demon: He’s ruling the roost, right now. King of all he surveys – as far as the inside of my head goes, anyway

Chemo Brian: We spent the morning together on the sofa, but even he can’t comfort me right now

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Fatigue/weakness: it’s going to get worse before it gets better, probably starting tomorrow, day 7.

Anxiety level (1-10): On the plus side, I’m not Nick Clegg, and my prognosis is probably better than his, too.

State of mind: Wondering if I could find a vet to put me down. It would be the kindest thing.

It’s day 6 of FEC 4, and I am realising that I have completely underestimated the poisonous power of chemo, as have all those people cheering me on who have not experienced it themselves. At the beginning R said it would be like marathon training – hard work, unpleasant, but for a specific purpose and, most importantly, time-limited. It would be horrible, but it would come to an end, and the finishing line would always be in sight, and the closer you got to the goal, the easier it would be to continue, spurred on by your nearness to success.

I took comfort from that idea, at the beginning, but have now come face to face with an unexpected truth: the experience of chemo is nothing like that at all.

With marathon training, you get fitter, you’re able to run further, demand more of your body, achieve things previously unthought of.  With chemo you become progressively more poisoned, weaker, more and more psychologically crushed and, as the weeks slowly pass, you dread each new dose of chemo more and more viscerally.

When I got to FEC3, half-way, that should have been a big psychological turning point: Half way! Yay! On the downward slope!

But it wasn’t like that at all. There was no sense of achievement; rather, I was filled with horror that having gone through this physical and mental torture 3 times already, I was now going to have to do it ALL OVER AGAIN. Similarly, now I’ve ‘done’ FEC4 (although I’m still in the middle of the side effects),  and there are ‘only’ 2 more doses of chemo to go, there is no sense of relief, just grim despair at what still lies in front of me: it’s as if I’ve already climbed the Eiger, the Matterhorn, Mont Blanc and the Jungfrau, only to find that Everest and K2 are still sitting there waiting for me, their jagged peaks wreathed in clouds of mist and snow.

It gets harder every time, not easier, and that’s an unexpected and very unwelcome truth. You become extraordinarily tired, mentally and physically, by going through the process of chemotherapy treatment. For the first 3 cycles of chemo, the first 9 weeks, I managed to keep going: there were a few very bad days each cycle, but I managed to keep on writing coherent blog-posts, more or less, getting dressed and going out each day, keeping the house going. I stayed mentally alert, and I could see the way forward.

Now, all I long for is sweet oblivion: another 8 weeks of this seems like a life sentence. I’m tired, so tired, and I just want to stop. To ‘cease upon the midnight with no pain’ seems like an extraordinarily attractive option, if only it were available. 

I am weary to my bones, and I am weary in my soul.

I know I’m going through the worst part of the cycle now, and I’ll have more energy again in a few days, and more hope, but right now the whole chemo enterprise seems like climbing up a mountain on my hands and knees: unbearably slow, and unbearably painful, and far more effort than it’s worth.

People are trying to cheer me up, and urge me on and R, as ever, is a tower of strength, but I’m just so weak now, in mind and body. Right now, the chemo has won.

It’s taken the life right out of me.

FEC - 1, Fo - 0 

Losing it. Just losing it.

Day 78

General status update:

Despair Demon: He abseiled in through the window earlier, and has opened up a Giant Black Hole of Despair in the middle of the sitting room floor, into which I am in severe danger of disappearing, never to be seen again.

Hair: the only part of me that seems normal at the moment. Still, miraculously, mostly attached.

Nausea demon: He started the day with an opportunistic bout of early morning retching, as I tried to swallow my anti-emetic drugs, but I managed to keep them down, just. I need to eat, but all food tastes disgusting – even water tastes disgusting. Everything is unspeakably foul. My stomach feels sick, sore and kind of scorched, all at the same time. I am living in the middle of Satan’s digestive system. Maybe I AM Satan’s digestive system. Please make this stop. Why am I being tortured like this?

Chemo Muse: she didn’t stand a chance today. There are the Dog Days of the chemo cycle and I just want to die. Who cares about blogging?  

Chemo Brian: With the help of Lorazepam and Chemo Brian have somehow got through the day on the sofa. I feel so bad I can’t even read. I watched moronic property programmes on the television because the noise and images diverted my mind from my stomach.

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Fatigue/weakness: has hit me earlier this cycle – I am in quite poor shape all round. So much for your body getting used to being poisoned.

Sleep, lack of: I took a Lorazepam last night, which helped me make it through the night, and am counting down the hours until I can take another one and become unconscious again.

Anxiety level (1-10): Have stopped caring about anything pretty much, except wanting not to feel like this.

State of mind: Not sure if I can do this any more. Each cycle it gets worse, and right now, at the worst point in the cycle, the thought of doing it twice more is just unbearable.

You know what? Your body doesn’t get used to being poisoned – at least, mine hasn’t. This is day 5 of FEC4, the worst day of the cycle, and it is every bit as bad as the previous three day 5s.

I FEEL TERRIBLE.

And the idea of there only being two more doses of chemo to go doesn’t comfort me at all. Each time there is more and more dread, and it is getting harder and harder to force myself to go down to the chemo ward to be poisoned, in the knowledge that a few days later I will feel like this; endlessly nauseous, endlessly toxic, completely overwhelmed by extreme physical discomfort.

Whoever thought inflicting this on defenceless, ill human beings was a good idea? Whoever thought it was worth inflicting chemical weapons on people so that they would suffer horribly, for a very small chance that it might help stop their cancer coming back?

Why do doctors push chemo on people when it has such a small success rate? OK, this is not the time to write about this, because at the moment I am hardly rational. However, it would be different if it had a success rate of 30 or, 40 %, even of 25%. But for a 7-8% chance of being helped AT ALL, I am enduring 18 weeks of torture from the effects of the chemotherapy drugs, not to mention all the problems I have experienced at the hospital with the administration of the chemotherapy, and with getting help afterwards with the problems from the side effects.

It has been 78 days so far of pain, nausea, toxicity, extreme fatigue, weakness, infection and being at the mercy of people who sometimes aren’t very interested in helping you. The whole thing has been a complete nightmare. Before I started the chemo, I was in fairly good mental and physical shape – now I’m pretty much a basket case.

On the whole, today, I wish I’d listened to my instincts and legged it to Goa while I still had the chance.