Running on Empty

Day 107

General status update

The Chemo Demons are all keeping well away from me because they don’t want to pick up this bug, except Chemo Brian, of course. who never catches anything anyway because viruses and bacteria stand no chance against the impenetrable fug of wacky baccy smoke that permanently surrounds him.

Anxiety level/insane euphoria: God, I’m missing the Dexys…

State of mind: guilty because I have been failing Cancer 101 again and displaying a Bad Attitude and making everyone worried about me, but also defiant because a person can only stand so much.

Hair: much like a small, dishevelled haystack, at the moment.

Well, that’ll teach me to throw the toys out of my pram in public: half an hour after I publish the little tantrum that was yesterday’s blog post R comes into the bedroom - whither I have retired with Paddy Leigh-Fermour in a state of high dudgeon - holds out the phone and says ‘It’s Becky’.

Ah.

F***! F***! How stupid was I to write that I’ve got an infection but I’m not going to go to the hospital, SO THERE?

WHAT WAS I THINKING?

They’re probably going to stage an intervention…

  

Matron Becky – aka the Mother Goddess and World Mum, in all her ineffable omnipotence, omnipresence and omniscience –  has been alerted to the fact that I am behaving badly, of course she has: it seems she was in the middle of reading the previous day’s blog post when the new one suddenly popped up and informed her that I am down with another infection and Acting Out.

She is deeply unamused.

A difficult conversation ensues; it’s hard to hold your own when you’re severely under the weather, mentally and physically exhausted, and have got the Chemo Matron/World Mum/Mother Goddess exuding gentle disapproval at you from the other end of the phone because you are self-evidently not just being a non-compliant patient, but behaving like an idiot in such a way as to endanger yourself and cause a great deal of worry to your loved ones. Although R is not in the room during this conversation, I can sense him cheering from the side-lines, and not for me.

Matron Becky reminds me that I am in the vulnerable, highly immuno-suppressed week mid-way through my fifth dose of chemo, and that with five doses of FEC now inside me that is a considerable build-up of toxins inside my body, hence the all-pervading weakness even before the infection set in. Even with the Pegfilgastrim injection, at this point my immune system is on the floor, and with my temperature at 37.4 deg she thinks it would be advisable for me to go down to the hospital to get my bloods done, so they can see how my neutrophils are doing, and whether the doctors should give them some more ammo to fight off the infection. She offers to call ahead so they will be expecting me.

This suggestion fills me with horror.

I know everything she says is important and right, yet….

It is one of the coldest nights of the year and, although I’m feeling truly rotten, and so very, very tired, I’m very cosy and comfortable here with Chemo Brian and my knitted throw, a nest of cushions and a heap of books and magazines. R couldn’t come with me to the hospital, as his little boy is staying with us this week, so a trip to the hospital would involve several hours alone in the A & E: blood tests, then a long wait for the results, needles, insertion of cannulas - my PICC line being no more - and a lengthy infusion of IV antibiotics while waiting for the blood test results because they automatically do that as a precaution against neutropenic sepsis.

I’m sorry, but I can’t face all that again tonight, I just can’t.

Right now, I can’t endure any more invasive physical procedures unless my life literally depends on it – this is the point to which my growing aversion to hospitals and medical treatment, and my general psychological deterioration, has now brought me. I’m really not being deliberately difficult, but both body and mind have had enough. If I go and spend another unutterably bleak and unpleasant few hours in the hospital now, I may end up just breaking down completely, like I started to do at the radiotherapy planning meeting last week.

I’ve been through the A&E routine before, and I’m not going there again unless it is absolutely necessary – as evidenced by a serious fever, which I haven’t yet got. In the end I take my temperature again whilst still on the phone to Becky and am deeply relieved to see that it has gone down to 37.2 degrees.

For Becky, this is not the point, of course; my temperature could start going back up at any moment and I am a very weak immuno-suppressed chemo patient with an infection who would be much, much better off down at the hospital getting my neutrophils checked out and further prophylactic measures put in place.

And as far as my body is concerned she is right, but my soul is no longer able to go along with the programme.

In the end, no doubt picking up on the fact that I am right at the end of my psychological tether, Matron Becky agrees that I can stay at home for the time being, on condition that if my temperature rises above 37.5 deg, or if I start to feel physically worse, then I will go to the hospital straight away. Deeply relieved, I put the phone down and curl back up in my nest of cushions and throws.

Not going nowhere, no, not me.

I'm running on empty, now.

Postscript, 24 hours later: the virus is continuing to rampage through me, I’m aching, coughing horribly, and am so weak I can barely stand up, but my temperature has stayed below 37.5 deg, so as long as I rest for the next few days I should be just fine without further medical intervention (inshallah/touch wood/God willing). At this stage of the game, I truly believe that Chemo Brian is the best medicine…