Viral overload

Day 106 

General status update

Not playing any more

For the last two days I’ve been feeling increasingly unwell and determinedly putting it down to being in the very weak and feeble part of the chemo cycle, plus the incremental effect of now being in my fifth cycle of FEC, and thus very full of accumulated poison, but this afternoon I have been forced to acknowledge that I am feeling unwell because I am going down with a respiratory infection, and feeling worse by the minute.

Oh God, here we go again…. this will be my third infection during the 5 chemo cycles so far, and let us hope that it will be containable, like the previous two, and not actually put me back in hospital, as has happened to so many of my Cyber Chemo Buddies over the last few months, including one only yesterday. The good news is that I received an injection of Pegfilgastrim, the immune system-boosting drug, after FEC5 10 days ago; this means that although we are now at the point of the chemo cycle where my immune system has been heavily suppressed by the chemo, which kills all the neutrophils, my neutrophil count won’t be as low as it would otherwise have been.

Hopefully my body, with the help of the Pegfilgastrim, will be able to fight off this infection, and not let it fast forward into neutropenic sepsis and a hospital admission, or even another trip to the A & E for IV drugs, because I am just too bloody tired for all that again now, OK?

Enough already.

I’ve had it with chemo, and infections, and no immune system, and emergencies and A&E departments and injections and IV infusions and hot and cold running doctors.

I am so exhausted, physically and mentally, after 6 months of cancer and 15 weeks of chemo, and I just do not want to do it any more.

Any of it.

You’re meant to call the hospital if your temperature goes above 37.5 deg, and go straight to A & E if it hits 38.0, but I’ve decided to ignore all that this time round. I’m staying put and not doing anything at all unless it gets to be well over 38.0 deg. (it’s 37.4 at the moment). The last two infections didn’t kill me, and my working hypothesis is that this one won’t either. And if Jesus does decide that this is the week he wants to take me for a sunbeam, well then that's just too bloody bad.

Hey,  immune system, this is just a run of the mill respiratory virus, not Ebola: so please put that very expensive Pegfilgastrim injection to good use, DEAL WITH IT on your own, and don’t bother me any further.

I'm done.

I’m going to lie down on the sofa again now with Chemo Brian and Artemis Cooper's new biography of Patrick Leigh-Fermor and I do not wish to be disturbed.

Got that?

Rollercoaster

Day 96 

General status update

Despair Demon: the Dexy-fuelled Chemo Muse ambushed him early this morning, tied him up, and imprisoned him in the airing cupboard. At least it’s nice and warm in there.

Nausea demon: On the floor at the moment, bludgeoned by the IV Fosapprepitant, the steroids (which do combat the nausea, as well as making me high, remember), and the Ondansetron, Domperidone and Cyclizine anti-emetic drugs I have taken orally this morning. He’s just biding his time though, until Sunday, when the steroids wear off.

Chemo Muse: When we get steroided up on the Dexys after each dose of chemo, she expands like a genie coming out a bottle, and fills the room in a shimmering, swirling cloud of mist threaded with iridescent rainbow lights gleaming from the long, writhing snakes of her hair. (what can I say; I’m on drugs, alright? There have to be SOME good bits in the chemo nightmare). She is very, very powerful this morning, as a result of which I wrote 500 words before 8am.

Chemo Brian: gazing in awe at the newly-psychedelic Chemo Muse, and muttering about how she reminds him of a particularly wild mescaline trip he took with Aldous Huxley in the Sonoma Desert back in the day. Jesus, HOW OLD is Chemo Brian? I thought he was just an old hippy – he was at Woodstock, after all – but if he was hanging with Aldous he must be an old proto-hippy. Ah, good point – Chemo Demons aren’t mortal, are they? Chemo Brian is the Stoner for All Ages.

PICC line: in disgrace after it refused to function in the Chemo Ward yesterday, even for Matron Becky, after behaving perfectly 3 times over the last 10 days and gushing blood like a geyser in Yellowstone Park. We both looked at it, completely aghast. thinking ‘I JUST DO NOT BELIEVE THIS’. It’s claiming to be suffering from intolerable levels of stress and performance anxiety because of the increasingly high expectations heaped upon it. ‘Yeah, but you can hardly say that this HASN’T HAPPENED BEFORE, CAN YOU’ muttered Becky, darkly, as she prepared yet another injection of saline solution to flush it with. Actually, given that it had two assertive and increasingly pissed off women staring at it with increasing fury every time it failed to perform yesterday, maybe it’s not surprising it couldn’t get it up…

State of mind: only one more FEC to go, only one more FEC to go, only one more FEC to go!!!! Sorry, did you say something?

Hair: Dozing gently, as per post-Cold cap protocol, in snood and Smurf hat. It loves this bit of the cycle.

I wrote all of the above very early this morning in a mad burst of steroid-fuelled energy and then paused, intending to write the actual blog post this afternoon. I had to go off to the hospital first for another of those very expensive Pegfilgrastim injections to boost the production of neutrophils in my bone marrow, to strengthen my immune system and keep me infection-free during this chemo cycle. Because I’ve had two infections during the first four chemo cycles, the oncologist is very concerned to prevent any more from taking hold.

At the hospital two very good things happened – it was probably my best hospital visit ever, but unfortunately I can’t write about it now because my energy has crashed completely.

I’ve become so weak all of a sudden that I just have to go and lie down.

This is the Way of Chemo: sometimes the fatigue hits you so hard that your body tells you ‘Lie down – NOW’ and you simply cannot do anything else.

Tomorrow I’ll tell you about the good things that happened – at least those regular readers who have suffered with me every inch of the way through the last 14 weeks will know, for once, that tomorrow there is a cheerful post to look forward to.

Unless something bad happens during the night, that is, a possibility which can’t be entirely ruled out, given the run of luck I’ve had so far.

See you tomorrow, my friends.

What fresh hell is this? Part II

Day 85  

General status update

Nose: eclipsed by mouth

Mouth: see below

Nausea demon: feeling very left out, as I’m being tormented far more effectivelyby others at the moment

Chemo Muse: says this is all terrific material – yeah, right. She doesn’t have to experience it.

Chemo Brian: I’ll be joining him on the sofa, shortly

The Anti-Tooth Fairy: like the Devil, she wears Prada.

Hair: not even on the agenda, right now

.

Fatigue/weakness: continuing

Anxiety level (1-10): Stratospheric, what with a new infection to worry about.

State of mind: I am turning into Job – there will be a plague of locusts arriving any day now…

Remember the Tooth Fairy? You were a little kid, one of your teeth fell out, your mother comforted you, and 50p appeared magically under your pillow during the night. I loved the Tooth Fairy, as do all children. What nobody tells you, though, is that the Tooth Fairy has an Evil Twin, who turns up when you’re middle-aged, and does Really Terrible Things to your teeth, which is bad enough, but the real kicker is that you have to pay for it all, at huge expense. She's the Anti-Tooth Fairy, and this time it's personal.

One of the first things you learn when you first start looking into chemo is that chemo and dentistry don’t mix; with the risk of infection, and risks from infection, being so high during chemotherapy treatment, the last thing your oncologist wants is anyone coming near you with sharp instruments, and tooth extraction is completely verboten. Any kind of dental treatment can be carried out only with the permission of your oncologist, and your best bet is to get your teeth very thoroughly checked out, and any necessary work done, well before you start your course of chemotherapy, in order to avoid any unfortunate incidents during the 18 weeks you are in your chemical prison.

And that is exactly what I did. By the time I started chemo my teeth were all in perfectly good nick - apart from the one at the front that I knocked out just before chemo started, and which cannot be replaced until after my chemo has finished, thus giving me the unfortunate appearance of an Appalachian bag lady, but that’s another story – so imminent dentistry was not on my current list of major anxieties. Much as breast cancer wasn’t on my list of chosen diseases about which to be hypochondriacal, come to think of it.

When I started getting pain in my jaw last week, then, I simply assumed it was coming from a new mouth ulcer, mouth ulcers being one of the Afflictions of FEC. It kept on hurting over the weekend, though, and I ended up taking quite a lot of painkillers, and I couldn’t seem to find the mouth ulcer. By this morning it was really hurting rather a lot, and the pain seemed to be increasing by the hour, and it seemed to me that the last tooth on my lower right jaw might possibly have a kind of hole in it. I didn’t poke it with anything pointy to check, but all in all an emergency appointment at the dentist seemed like a good plan.

At 2.30 this afternoon, my lovely dentist, who works in what I can only describe as an Islamic Feminist Dental Practice, conveniently situated on the ground floor of the huge mansion block in which R & I live, informed me that the pain was not, as I had hoped, psychosomatic, but that there was indeed a deep hole in my tooth, and the nerve was probably irreversibly damaged, which didn’t sound good. An x-ray then confirmed that the damage was irreversible and there was also an infection in the tooth, and that was very bad news indeed; my oncologist had not only made a point of saying that she would much prefer it if I could manage not to acquire another infection before my next chemo cycle, she had also insisted on giving me that very expensive injection of Pegfilgastrim 10 days ago in order to prevent such a thing occurring.

The dentist then went on to say that the tooth was now essentially toast, although it could be ‘saved’ via root canal work; the pain was coming both from the damaged nerve and from the infection, and because of the chemo and my immuno-compromised status, she would need to consult with my oncologist urgently about what antibiotics I could be given, and whether the oncologist would permit her to do enough work at least to kill the nerve, pending further treatment later on. In the meantime, she inserted a medicated dressing into the tooth to help with the pain, and topped it with a temporary filling.

Fabulous, just fabulous.

I went home, alerted R to this latest disaster-in-the-making, and tried not to fret too much about the burgeoning infection in my jaw, just at the time in the chemo cycle when the immune system is at its weakest. While I waited for a phone call from the dentist, I thought very warm and grateful thoughts towards my oncologist, who had had the foresight to insist on that immune-boosting injection, without which neutropenic sepsis might well have already set in.

An hour later I receive a slightly exasperated call from the dentist’s receptionist, who I believe is her little sister, to say that they had been unable to get a reply from the oncology secretary, and no-one had yet replied to their urgent message. Could I possibly try calling the hospital as well? I assured her that I knew someone to call, and called the Chemo Matron, who had very kindly given me her mobile number and told me that I should call her immediately if any more problems arose. I had not anticipated actually having to do this, but doctors in the oncology department are not easy to get hold of, so it seemed the best way forward in what was a genuine medical emergency.

Becky got straight on the case and within half an hour had got Dr K to write a prescription for some high dose antibiotics, which I then picked up from the hospital pharmacy. Tomorrow I am to go into the hospital to have my bloods done, to see how the neutrophils are holding up in the face of this new infection, and whether I am deemed fit to have any dental treatment.

Meanwhile, I am treating the pain with some industrial strength pain-killers, and a couple of glasses of a vigorous Argentinian Malbec which R picked up on the way home from work, the better to drown our sorrows in ( I did take the precaution of checking with the hospital pharmacist that a glass of wine was not counter-indicated with these particular antibiotics).

R wondered, tentatively, whether red wine was the ideal thing with which to take one’s painkillers;  I replied as follows: ‘My mother always says that she finds it helpful to wash down her painkillers with a good strong dose of alcohol, and she’s 82 years old and a hell of a lot healthier than I am – I rest my case.’

Cheers…..

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….