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…

What fresh hell is this?

Day 83 

General status update: today it’s all about my nose…

Nose: see below

  

In a new, painful and truly humiliating development, MY NOSE IS FULL OF COLD SORES.

Ah, FEC, the gift that keeps on giving and giving and giving...

A strange 'blister in the nose' has blossomed overnight into a cascade of cold sores descending from well inside my right nostril down to the edge of my nose. I had absolutely no idea that it was even POSSIBLE to get cold sores in your nose. I must say I don't like developing new side effects at this stage one little bit. I feel I've paid my dues with the frigging side effects, what with being the 2013 FEC All England Extreme Nausea Champion, not to mention the 74 days of suffering before getting relief for my Toxic Swamp Stomach. But no, now we're getting the Free Bonus side effects - lovely.

This is probably my punishment for still having hair and eyebrows, which is manifestly unfair on all the other girls - just to even things out, the Chemo Gods have sent the Fecking FEC Fairy to wave her magic wand over my nose...

I’ve got mouth ulcers, too, and a touch of cystitis, so I’m well on the way to ticking every box in my I-Spy Book of FEC Side Effects – I think you have to have experienced all of them to get your special badge at the end of chemotherapy. Now. I’m just waiting now for the conjunctivitis to strike, and then I'll have the full set..

As if this weren’t enough, we’re now getting to the really exciting part of the chemo cycle again, the ‘nadir’: the point when white blood cell counts are at their lowest after a chemotherapy treatment, the patient is significantly immuno-compromised, and there is a high risk of contracting an infection. As regular readers will remember, this is the point at which I acquired a respiratory virus a month ago, became neutropenic, and was forced to delay my fourth dose of chemo for a week.

My oncologist was concerned that this shouldn’t happen again, so last week after FEC4 I was given an injection of something called Pegfilgrastim, which Wikipedia defines as: 

‘a long-acting colony-stimulating factor produced by recombinant technology and used as an adjunct in patients with bone marrow suppression caused by antineoplastic therapy.’

This is, even now, stimulating my bone marrow to produce more neutrophils to fight infection, and the reason I’m mentioning it again is that I’ve just found out how much it costs the NHS for one injection: £714.24, to be precise. I was astonished at this, but R explained that the cost is so high because the stuff is a freshly cultured biotechnological product (made from E.coli, I seem to remember) rather than just a cheap chemical.

It gives one pause for thought, though, the cost of that injection: that’s a lot of money to throw at strengthening one person’s immune system for a week or two. It’s a demonstration of just how dangerous chemotherapy is, just how vulnerable it makes you to life-threatening infections, that the NHS is prepared to shell out that much money, without blinking, to keep me safe while the chemo drugs have wiped out my immune system.  The costs that it avoids are those of admitting you to hospital for a week or two if you do get an infection, and this is very common: today I was looking at the section of the Breast Cancer Care UK forums for people who started chemotherapy last month, in February, and saw that they have been dropping like flies, with a number  of the group already in hospital with infections. This is a very infectious time of the year.

I’m not someone who needs reminding of the danger of chemo, of course, given that my former husband died at the age of 32 from a lung infection after aggressive chemotherapy for leukaemia, but it just occurred to me that it would be interesting to check out how many chemo-related deaths there are these days.  Googling it, I found that hard data are difficult to come by, but I’ve just down-loaded what looks like a fascinating report, published in 2008, by NCEPOD – the National Confidential Enquiry Into Patient Outcome and Death – into chemo-related mortality.

Ploughing through that will keep me usefully occupied over the next few days, while I try to avoid all sources of infection, and fret anxiously in case one is incubating already. I’ll report back with the highlights in due course….