One of our PICC lines is missing…

Day 46   

General status update 

Hair: Not at all happy about wearing R’s Smurf snow hat (see below) – wants the snood. Also v. worried after nurse informed me Hair will probably start thinning quite a lot soon. Sobbing Hair in Smurf hat – not a good combo. 

Nausea demon and Chemo Muse: currently engaged in vicious hand to hand combat on rug in front of sofa, fighting over who is going to control me over next few days. Depending on the outcome, today could either a) be v. productive or b) involve steroid-fuelled long-distance projectile vomiting. Chemo is never boring. 

Chemo Brian: In his usual place on sofa, gazing about him with the air of a bewildered bison, and saying ‘this is HEAVY stuff, dudes – what the f*** are you guys fighting about?’.

Fatigue/weakness: Cancelled by steroids until further notice. 

Sleep, lack of: I’m feeling very perky, mentally, because of the Dexamethasone – which is fab for now, but may be less so if perkiness continues until 3.30 am, as in the 2 previous chemo cycles. 

Anxiety level (1-10): WAY too much going on for anxiety today. Deeply relieved that FEC 3 finally got delivered yesterday, though. 

State of mind: The inside of my head feels as if it’s suffered a home invasion by a squad of belligerent ferrets. ‘Mind’ no longer really covers it.

All the dire warnings I have received about FEC 3 invest it with a  significance similar to that of the Ides of March for Julius Caesar, which may well have something to do with why I find myself weeping as R and I make the Walk of Doom down the Fulham Palace Road again towards the hospital and my 10.30 am appointment for the third dose of chemo.  

R, alarmed, asks me what the matter is. 

‘Nothing, I’m fine’ is clearly not an acceptable answer in the circs, but sometimes it’s quite hard to put into words why are you are crying; determining the aetiology of uncontrollable wellings-up of emotion is not necessarily easy, or even possible, as I am quite certain that Aristotle would agree, so I go with: 

‘Sorry. Just everything, really. Sometimes it all just gets too much. I’ll be fine. We’re nearly half-way through now’. 

When the nurse comes to take me into the chemo ward R is temporarily absent, getting coffee, so she finds me sitting there alone with tears still streaming down my face; she too, is alarmed. 

‘What’s the matter? Did the doctor say something to you?’ 

She clearly thinks that I have just been informed by my oncologist that they have found metastases in my liver, bones and brain, and I hasten to assure her that this is not the case. 

‘No, nothing like that. Sorry, it’s just all got a bit on top of me this morning.’ 

My self-appointed ranking as the 23^rd hardest woman in the Charing Cross Hospital Chemo Day Ward is looking to be in danger. Got to get a grip, before they decide to send me off for psychological evaluation or, even worse, call in the Chaplain. 

The nurse, whose name is Alice, and who will go on to show me consistent patience and kindness throughout what will be a very long and trying day for her, too, doesn’t look convinced, but ushers me into the ward and gets me settled in my Big Pink Chair of Chemo. The usual lengthy list of pre-chemo rituals commences. The Cold Cap machine is plugged in to get the cap to a suitably Arctic temperature; the long list of drugs I am to be infused with is gathered together, checked and re-checked.  

My head is anointed with conditioner, and I find out for the first time why they do this: it’s to stop your hair being frozen into the ice which forms inside the Cold Cap while you are wearing it. If your hair wasn’t covered in gloop, then it would be ripped off, frozen inside the ice, when they remove the Cold Cap several hours later. 

The Cold Cap goes on, and the pain is intense. I begin to recite Byron’s ‘The Destruction of Sennacherib’ to myself as a distraction, something I often do in similarly distressing circumstances at the dentist. Learning all that poetry by heart had to come in useful sometime… 

The Assyrian came down like the wolf on the fold,

And his cohorts were gleaming in purple and gold;

And the sheen of their spears was like stars on the sea,

When the blue wave rolls nightly on deep Galilee.  

Oh, Holy F***, this hurts. It hurts, it hurts, IT HURTS no don’t think about that, concentrate on the poem, keep going. 

 Like the leaves of the forest when summer is green,

That host with their banners at sunset were seen:

Like the leaves of the forest when Autumn hath blown,

That host on the morrow lay withered and strown.  

Strown, George, strown? REALLY?

For the Angel of Death spread his wings on the blast,

And breathed in the face of the foe as he passed;

And the eyes of the sleepers waxed deadly and chill,

And their hearts but once heaved, and for ever grew still!  

And the Angel of S***ing Death can just B***ER right off… 

 And there lay the steed with his nostril all wide,

But through it there rolled not the breath of his pride;

And the foam of his gasping lay white on the turf,

And cold as the spray of the rock-beating surf.  

Poor horse, I know JUST how you feel… why is R looking at me like that?

 And there lay the rider distorted and pale,

With the dew on his brow, and the rust on his mail:

And the tents were all silent, the banners alone,

The lances uplifted, the trumpet unblown.  

Ah, this is the first time R has actually witnessed this part of the proceedings ‘Don’t worry, I’m FINE. Really. It’s a piece of cake. ’

 And the widows of Ashur are loud in their wail,

And the idols are broke in the temple of Baal;

And the might of the Gentile, unsmote by the sword,

Hath melted like snow in the glance of the Lord!

By the end of the poem my head is freezing and numbing, and the sensation of pain from the cold is moderating from level 1 – 40 mph Katabatic Antarctic Wind as found at Cape Dennison in the eastern Antarctic  - to level 2 - no colder than what you might experience on a brisk walk round the Marine Drive on the edge of the North Sea at Scarborough, north Yorkshire, on a freezing January day, if you have been so foolish as not to don any headwear – and I am able to continue without issuing further squeaks of anguish. 

Meanwhile, the chemo nurse is coming up against a bit of a problem: before administering the chemo drugs, she has to check that my PICC line - the tiny, narrow, permanent (for now) catheter running up inside a vein in my arm and round into a much bigger vein near my heart - is clear and unblocked.

 This she does by

a) injecting it with saline solution, to flush it – no problem.

b) drawing some blood from it – BIG problem. Nothing comes out.

Alice flushes the PICC line with saline solution again – fine. She tries to draw blood again. Nothing. She tells me that sometimes there can be a problem with a PICC line because of the position of the arm, and that they have various techniques to deal with it. First, lying me down.

The Big Pink Chemo Chair is put into a reclining position, and my arm is made as relaxed as it can be. I am told to take deep breaths and hold them in. No go. Vertical once more, I am instructed to wave my arm round a little, and rotate my shoulder - still nothing – and then to stand up and do the same thing, only more vigorously. All this pink-helmeted activity is brightening the morning of the other temporary residents of the chemo ward, I am glad to see.

Alice sighs, ponders her next move, and then says: 

‘I’m going to put some Heparin in - it’s like Mr Muscle for blockages’

Heparin is a blood anti-coagulant, the name of which for some reason I associate vaguely with rats. 

‘Ooh,' says R ‘Cillit BANG!’

‘Exactly’ says Alice.

The Heparin doesn’t work either. Poor Alice has by now been through half a dozen pairs of surgical gloves and about half a gallon of saline solution, and is beginning to look a little distrait. She summons help from a senior nurse, who says we need more of the Heparin vein-drain-cleaner, and that it should be left to work for 20 minutes this time before she tries to flush it again. Of course, that's what it says on the Mr Muscle bottles, too. 

Time is moving on. We have been here for nearly 2 hours, and are nowhere near the chemo. Alice gives me the second dose of Heparin, and says she will return in 20 minutes. My head is still freezing inside the pink helmet, obvs.

When she returns, there is still no joy from the PICC line, and we have got to the stage where doctors have to become involved; the nurse explains that there is a possibility that the end of the PICC line may have become dislodged from the vein deep inside me, and that they need the doctor to authorise an x-ray. They can’t inject the chemo if they’re not sure the PICC line is in place and working properly – it’s too dangerous.

So then there is bleeping of doctors and waiting and a series of telephone calls explaining the situation.  I don’t like the bit where I overhear the senior nurse telling someone that it is scary – twice. First it seems that Stan the Oncologist will come and sort it, then that is overruled by another doctor who says that they will request an urgent chest x-ray, so I should go down to the imaging department on the first floor. It’s not clear what will happen if they find that there is something amiss deep down inside, and I choose not to enquire, in the hope that I will never need to know.

Going to get an x-ray requires the removal of the Cold Cap and defrosting my now deeply-frozen head. Pffft. Still, the nurse leaves the machine on, so my head can be rapidly refrozen when I get back. This is also the point at which I discover I have forgotten to bring my snood, so I borrow R’s black pointy snow hat, which makes him look like a 6 foot plus Viking Smurf, and has been the cause of much amusement.

 Just refresh your memory, this is what a Smurf looks like. Did you know that The Smurfs are Belgian, and that in the original French their name is Les Schtroumpfs?

Now it’s my turn to wear the Smurf hat, and I look like a 5’ 3 1/2” woman who has inexplicably failed to look in the mirror before she left the house. 

By the time I am finally sent down for the x-ray it is 2.08pm and I have been at the chemo ward for 3 ½ hours, and am starting to feel very, very tired. Down in the imaging department, we are delighted to find that my x-ray request is already on their computer system, and it all happens very fast, the only delay being caused by my lengthy struggle to fasten up the ‘Dignity Gown’, into which you have to change for an x-ray. I can’t blame Chemo Brian for this, because the same thing happens every time I have to don one of these challenging garments. 

Why do hospital gowns have to be so extraordinarily complicated to do up that they require a 6-part set of photographic instructions on the wall of the changing cubicle, detailing the exact sequence in which you must fasten all the different–coloured dangling ribbons, in order to preserve your dignity?

I have done this a number of times now, and on each occasion become flustered and distressed at my inability to do it right. And, of course, deeply convinced that it is simply my own ineptitude – off the cuff analysis of Kant’s Groundwork for the Metaphysics of Morals? No problem. Tie up series of little coloured ribbons in the correct order? Complete mental meltdown. 

Furthermore, however tight I tie the wretched ties, the gown still gapes open at the front, exposing my breasts, as soon as I move. Excellent. It strikes me that there is a fundamental design flaw here, either in the upper half of my body, or in the Dignity Gown itself. Clutching the 2 halves of the gown across my bosoms, I open the cubicle door and sit waiting to be collected, as instructed. I am mildly cheered by the sight of a hefty, pony-tailed middle-aged man walking past, in what seems to be only a Dignity Gown accessorised with a pair of biker boots. At least I got to keep my jeans on.

 I sit and wait, and nothing happens for quite a while; the urgency seems to have evaporated. I am hungry; I never got to eat my sandwich, and breakfast was more than 6 hours ago. At this point I have a quite overwhelming desire just to slip my clothes quietly back on, pick up my bag, and walk out of the hospital, but even I can see that this is not a sensible plan; my PICC line must be sorted out and the FEC3 administered and, if not now, when? 

A woman comes to collect me; I walk after her back through the waiting room, still in my Smurf hat, clutching my belongings in the plastic carrier bag provided and completely forgetting to hold the front of the gown together, thus affording everyone in the waiting room a rather more extensive view of my frontal elevation than they would probably have preferred.  

Some moments you just want to forget, really.

 

 I would hereby like to make a public appeal for public-spirited persons with both engineering and garment design genius – perhaps a team comprising Dame Vivienne Westwood and Sir James Dyson – to come forward and do hospital patients everywhere a favour, and redesign the Dignity Gown. It would be a great service to humanity. And if it has to incorporate a crinoline, no problem.

 

The x-rays pass off without incident; by 2.45 we are back in the chemo ward, and the nurse is phoning the doctor. The x-ray is now on the system, so perhaps he can save time by looking at it wherever he is, and not coming down to the chemo ward. It is at this point we discover that someone has switched off the Cold Cap machine while I was downstairs, so we will have to wait for it to freeze up again before my head can be refrozen, too. 

Meanwhile, the oncology SHO calls to say he has looked at the x-ray, and the tip of the PICC line is still in my vein, so the nurse can go ahead and administer the chemo. Hooray! The nurse adds that the doctor has to come down to the chemo ward anyway, to sign a piece of paper to say that it is safe to go ahead with the chemo.

‘Is that so if it kills me, then everybody knows that it’s the doctor’s fault, not yours?’

‘Exactly. Although it would still kind of be my fault because I put it in you.’

Finally, the nurse hooks up the PICC line to the chemo machine, with a big bag of saline in it. It is 2.52, and I have been in the hospital for 4 ½ hours, during which time I have had so much salt water pumped into my bloodstream that I could probably now be used to pickle gherkins. 

Then we discover the Cold Cap machine is malfunctioning: its High Temperature Alarm keeps flashing. R points this out to the nurse, who has also not had her lunch yet, and is looking pretty tired as well; I only have to sit and wait – she is the one who has to sort all the problems out. The machine is turned off and then on again, the tubes are removed and reattached, and finally it starts to freeze properly.

As we are all silently wondering whether there is ANYTHING ELSE that can possibly go wrong, I drop my mobile phone on to the tiled floor, and its back falls off. R is becoming a little agitated now, because this evening he is due to give a rather grand public lecture – the Locke Lecture - to the Worshipful Society of Apothecaries, one of the City of London livery companies, dating back to the 12^th century; it founded the Chelsea Physic Garden, former members include John Keats and Elizabeth Garrett Anderson, and its members are mostly doctors.

Such a lecture is a completely immoveable feast, and had all gone well today I would have been back home well before R had to leave for the Apothecaries’ Hall over in Blackfriars. Now he is faced with leaving me mid-chemo, and he’s quite upset about that. I’m not too worried though, as I’m getting a bit sleepy, and tell him that I can have a bit of a nap while the chemo is going in, and then it’s only a short walk home.

At 3.18, nearly 5 hours in, Alice puts the Cold Cap on my head again, and back comes the pain. Having your head frozen twice in one day is not an experience I would recommend to anybody. But after that, it all starts to go smoothly. While the Cold Cap freezes, they pump in the FosApprepitant and Ondansetron anti-emetic drugs, then the Dexamethasone steroids. While this is happening, Alice sorts out the many, many bags of the 3 chemo drugs, all in their bright yellow HAZCHEM plastic envelopes. With the senior nurse she goes through the ritual chanting and checking of drugs, batch numbers and expiry dates; the administration of chemo is a process in which one small mistake could do a great deal of damage.

At 3.48, the first chemo drug, the alarmingly bright red Epirubicin, starts flowing down the plastic tube from the chemo machine, into my PICC line, up my arm, into my chest, down into the vein near my heart and thence into my bloodstream. R and I are both deeply, deeply relieved.

The only fear worse than the fear of having your chemo is the fear of NOT having your chemo, and being forced to come back and do it all over again on another day. This happened to a friend of mine the other week at another hospital: she was in the chemo ward, all wired up, had received the anti-emetics and steroids, and was expecting the chemo to start at any moment, when a nurse came over and said that they had just looked at her blood tests, and her platelet levels were too low for her to withstand chemo.  She would have to go home, and take more medication to strengthen her immune system. Her chemo would be delayed for a week. They had had a 2 hour wait before being admitted to the ward and her husband had taken the afternoon off as unpaid leave to be with her. The blood test had been taken 2 days previously.

After that, everything else goes without further hitches. R leaves reluctantly for the Apothecaries’ Hall at the last possible minute, with many admonitions to text him immediately if I need him to come home straight after the lecture – he will skip the feasting bit afterwards if necessary. I tell him this will NOT be required, and to go knock ‘em dead and then feast to his heart's content: boy, does he deserve it.

Then I settle down in the quiet of the chemo ward – most of the other patients are long gone – and read ‘Phineas Finn’ on my Kindle, the only sound the regular clicks and gurgles from the chemo machine beside me, the only movement my finger touching the screen in front of me to turn the pages. I am soon lost in the world of Victorian politics and love-affairs: it’s so long since I first read Trollope’s Palliser novels that I have forgotten many of the plot details, including which of Phineas’ many amours he finally settles down with - he seems to find it remarkably, even unflatteringly, easy to transfer his affections. Still, it is engrossing, and very soothing. They tell you not to eat things you like during chemo, because it acts as aversion therapy, and afterwards you will never want to eat them again; I hope this doesn’t apply to books, too.

After the chemo finishes, I have to keep the Cold Cap on for another 45 minutes, and I finally fall asleep; Alice has to wake me to remove the bright pink helmet.  By this time I am the last patient left in the chemo ward, and they are tidying up for the night. Before I leave I thank Alice for her  patience and kindness during the day – the seemingly intractable problems with the PICC line were clearly very trying for her, despite which she maintained an unflappable cheeriness of demeanour throughout - and say what an enormous difference it makes, when you have to come to the hospital as often I do, and feel so vulnerable and powerless, if the staff who treat you are kind, and listen to you. She says ‘tsk, tsk’ and that that is what she is there for, but we both know that not all medical staff exhibit quite the same approach.

At just before 6pm, after 7 ½ hours in the chemo ward, I am free to go and, once again wearing the Smurf hat, set off for home up the Fulham Palace Road.

 

This is the largest ever recorded gathering of people, 2510 of them, dressed as Smurfs. It took place in Swansea in 2009.