Fo Agonistes

Day 75  Does it really have to be like this?

General status update

Hair: deeply traumatised after yesterday’s extensive freezing; still defrosting inside snood

Nausea demon: He’s back, and working very hard: he’s just one lonely nausea demon fighting against the powers of Big Pharma in the form of the anti-emetic drugs Fosapprepitant, Ondansetron, Domperidone and Cyclizine, not to mention the steroid Dexamethasone, but he’s still managing to make himself felt. He’s a tough little bugger, I‘ll give him that.

Chemo Muse: She says ‘OK, we’ve got the Dexys, your brain is wired, now it’s time to get serious. WRITE’

Chemo Brian: Keeps saying he wishes he could have been there with me on the chemo ward yesterday, and that I am to snuggle up with him on the sofa just as soon as I’ve finished writing this blog post and am allowed to stand down by the Chemo Muse.

Fatigue/weakness: What are you talking about – I’m on STEROIDS!!! YAY!!!

Sleep, lack of: Steroids delayed it a bit last night, but got there in the end.

Anxiety level (1-10): You can’t be anxious on steroids, because you have The Power

State of mind: Mistress of the Universe, albeit a rather nauseous one.

As we walk down the Fulham Palace Road on Thursday afternoon towards the Charing Cross Hospital and FEC4 I am fuzzily optimistic, the fuzziness being an artefact of the Lorazepam tablets I have taken last night and this morning, in order to deal with what is now extreme anticipatory dread before the administration of chemo.

I know I have been very unlucky in that in each of the first 3 cycles of FEC, I have come against some fairly major problems: in cycles 1 and 2, I experienced  severe nausea in the days after receiving the chemo, with insufficient drugs to cope with it, had considerable difficulty getting any help, and endured a great deal of physical and mental distress. For FEC3, The problem lay in its administration, due to the fact that the nurses were unable to draw any blood from my PICC line, and the day ended up being an exhausting 7 hour saga, involving emergency x-rays, during which my head had to be frozen, defrosted, and then frozen again. These experiences have all been documented in detail earlier in the blog.

For FEC4, I am reasonably confident that there will be no snafus. When I went to have my blood test done on Monday, the nurse in clinic 8 was unable to draw blood from my PICC line, but told me that it was not important: she had been able to flush the PICC line by pumping saline solution into it, which meant that it was clear. Why blood wasn’t coming out was mysterious, but it wasn’t really important; she took the blood from the back of my hand instead. I asked her if this lack of blood might cause a problem with the chemo on Thursday, but she said not. The previous week another nurse in clinic 8, who said she had previously worked on the Chemo Ward for a number of years, had told me much the same, and said that all the business with emergency x-rays for FEC3 had been unnecessary: if the saline solution goes in, then the line is working ok to put the chemo in, whether blood is coming out or not.

I am not unduly worried then, as we go into the Chemo Ward, about PICC line problems; it flushes OK with saline, so there shouldn't be a problem. Today my chemo nurse is Georgiana, a Romanian who manages to combine being highly professional and ferociously organised with warmth and kindness. I am immediately glad to be in her hands. They have got the cold cap machine fired up before I come in, so as soon I am settled in the Big Pink Chair of Chemo, the cold cap goes on and it is AGONY.

Today’s chosen poem for reciting to distract me from the torture of the cold cap is Robert Frost’s ‘Stopping by Woods on a Snowy Evening’, but the pain is so acute I can’t get my brain into gear:

‘Nooooooooooooo, stop stop stop STOP THIS….come ON, Caroline, focus FOCUS, it will help with the pain….

Whose woods these are I think I know.   

His house is in the village though;   

He will not see me stopping here   

To watch his woods fill up with snow.   

I can’t bear this, it hurts so much, it’s worse this time, I CAN’T BEAR IT.

R can see I am suffering, and offers to get me some coffee. I nod, and he goes off to fetch it. Back to the poem, ignore the pain.

My little horse must think it queer   

To stop without a farmhouse near   

Between the woods and frozen lake   

The darkest evening of the year.   

   I realise I should have taken some painkillers in advance of the cold cap, but forgot because I was focused on taking the Lorazepam. Lorazepam is excellent for anxiety, but it doesn’t seem much cop at dealing with pain.

He gives his harness bells a shake   

To ask if there is some mistake.   

The only other sound’s the sweep   

Of easy wind and downy flake. 

   God, this is horrible, it is beyond horrible, but I must keep going. Freezing stops the bastard FEC from taking my hair. I’ve done this 3 times  already, I can do it again.

The woods are lovely, dark and deep.   

But I have promises to keep,   

And miles to go before I sleep,   

And miles to go before I sleep

   Those woods are looking pretty damned attractive right now, to be honest. Just go in there, curl up, lie down in the snow, and stop all this torture. No, MUST keep going.

R brings the coffee, but it doesn’t help much. I just have to grit my teeth, keep reciting the poem over and over, just keep on bearing it. It will get better soon. Eventually the pain abates to a bearable level, but it’s by far the worst cold cap experience so far. I sit there, shaking, as Georgiana comes to flush my PICC line prior to infusing the anti-emetics, the steroids, and then the chemotherapy drugs.

The saline solution flushes in just fine, and I hold my breath as she tries to get some blood out. No go. I tell Georgiana that the nurses at Clinic 8 said it wasn’t a problem, and about what happened last time with the emergency x-ray etc.

She says ‘It’s nearly 3pm; we don’t have time for emergency X rays. I need to get some blood out of the line, or we can’t do the chemo today. It is too dangerous. But I can put in the anti-emetics and the steroids now, as they’re not dangerous, and then we’ll try with the blood again after that.’

And she does, and it doesn’t work, and so the whole saga happens all over again: repeated flushings with saline, repeated attempts to get blood, all to no avail. I am instructed to stand up and do callisthenics, to get the blood flowing, but shoulder rolls and stretches don’t work: still no blood.Other nurses are consulted, and I am injected with an anti-clotting agent, to see if that will shift it: no joy.

For whatever reason, a clot or a kink in the line, my PICC line just will not give blood. The nurses decide it might be better if I’m on a bed, so I’m put on a bed, the foot of which is then winched up into the air, so that I am lying at quite a steep angle: feet up, head down. It must be quite a sight. It makes no difference.

By this time I am getting very, very cold. I’ve had the cold cap on for a long time, and my whole body is shivering. I cover myself with a big woolly cardigan, but it doesn’t make much difference: I am so, so cold, and it’s all I can think about now.

Feeling woozy and confused, I ask Georgiana again why they can’t give me the chemo if the line is flushing OK with saline – the nurses in clinic 8, the haematology clinic, said it would be OK.

Georgiana is indignant. ‘It’s not OK. These drugs are highly toxic and very dangerous – if they get into your tissues, it will cause necrosis. You could die, or at the very least need extensive surgery to repair the damage. I don’t want you to die, and I don’t want to lose my job. What the nurses in clinic 8 are doing is wrong; it is their responsibility, when you come for your pre-chemo blood test, to ensure that blood can be drawn from your PICC line. If it can’t, then it should be investigated then and there, when there is time to do it – not when you’re here at the chemo ward, when there is time pressure to get the chemo finished before the ward closes for the day.’

R and I are both immediately convinced, but still very confused about all the conflicting information we have been receiving.

Eventually Georgiana says: ‘There are 2 choices. It’s too late to get investigations done on your PICC line today, so you could go home, and come back tomorrow for a ‘lineogram’ to see what the problem is, and then have the chemo. Or, if you still want to have the chemo today, I can put the chemo directly into a vein on your wrist.’

This scares me; I’ve heard so many stories of people who have the chemo drugs directly into their wrist getting their veins damaged by the extreme toxicity. On the other hand, I am very tired, extremely cold, getting more and more distressed and utterly horrified by the thought of having to come back again tomorrow and start this all over again, not to mention the fact that I’ve already been pumped full of anti-emetic drugs and steroids.

‘I don’t want to do this again tomorrow.’ I say, wearily ‘Let’s try the vein. But I’m afraid my veins are very small – that’s why they gave me the PICC line.’ Georgiana picks up my hand and examines my wrist, where there are no veins visible; nor are there any on the back of my hand. I’m just not a very veiny person.

‘Hmmm, I see what you mean. OK, we’ll immerse your arm in hot water for a while – this helps to expand the veins.’

A bucket of hot water is brought, and I lie on the bed for 20 minutes with my hand in the bucket, wondering, for the thousandth time, how my life has come to this. I’m still extremely cold; the hand is the only part of me that feels warm. The hot water does the trick, and a vein is now discernible in my wrist. Georgiana pushes in a needle, the cannula is fitted, and at last I am ready to be infused with the chemo drugs.

And so FEC4 is finally administered, but I am so, so cold. R covers me with my coat, and I have the big woolly cardigan, but I’m constantly shivering. Because of all the delay, I have been wearing the Cold Cap for a very long time, and I am chilled to the bone. I can’t think, or read, or speak: all I can do is close my eyes, huddle further underneath my coverings and wait for it to be over.

Eventually, all the bags of chemotherapy drugs are in my bloodstream, and we can stop. It is 6pm. Georgiana lifts the pink Cold Cap from my head – my hair is frozen solid in a ball of ice. Soon it is wrapped up in the snood, and I am wrapped up in my coat; we thank Georgiana, who says she is going to write a report for her manager about the problem with clinic 8.

R gently guides me to the lifts; I’m not really capable of speech. All I want is to get home, curl up on the sofa and be warm again. Right now, I feel as if I will never be warm again.

And I never got to think about the sun, and the swans.

Having chemotherapy is frightening, uncomfortable and stressful even if it goes smoothly, but both FEC3 and FEC4 have left me, by the end of the day, mentally and physically traumatised. FEC1 and FEC2 also left me very distressed, in the following days, through not being able to get help to deal with the side effects.

Every single one of the four doses of chemotherapy I have had so far has left me in a state of severe distress, not just because of the chemo itself, but because of communications problems within the hospital, organisational snafus, emergency phone lines being out of order – the list goes on and on. As soon as anything out of the ordinary happens, the patient is left blundering about in a maze of overlapping jurisdictions and people giving frighteningly conflicting information, or saying ‘This is not my problem – someone else should be dealing with it’

This is torture.

Chemo is torture, but it shouldn’t be this bad.

Does it really have to be like this? Over and over again?