Tuesday, May 05, 2009

The no good, very bad three weeks

So far, I've been sick a lot, I've slept a lot and I have a white blood cell count of 0.65.

That's the short version.

Fentanyl. This is a controlled substance. An opiate pain-killer. You have to sign at the pharmacy in order to be given it. It's a patch that you stick on your skin and it gradually releases the drug over 3 days and then you stick on a new one. Goody. The Princess Oncologist prescribed, I thought 'great' - don't have to keep taking pills all the time - it releases gradually so you don't get an up and down effect every 4-6 hours. Oh, and by the by, you can get a few side effects when you start it - nausea, sickness, drowsiness, anxiety. But you get used to it in 7-10 days and they stop.

Hohohohohohohohoho - have you met me, Princess Oncologist??
The first day I had the patch on I was virtually comatose. I couldn't stay awake, I couldn't keep my eyes open, when people spoke to me it was like I was in a fog and I thought I was saying normal things to them but I'm not too sure I was. And I'd be sleeping (if you can call it that) and I'd suddenly wake up because I felt like I'd just stopped breathing - you know that sudden catching of the breath and breathing hard? And that scared the crap out of me. And then I was nauseous - continuously but without the actual relief of throwing up. The Dear Other and my Papa were so worried about me that they rang the Macmillan Team and my nurse came out to see me.

'Oh yes', she said, 'Fentanyl will do this - but after 7-10 days it will be much better'. And phoned in a prescription for Cyclazine to my GP. Cyclazine. Yes, improves the nausea but, makes you drowsy. I spend more time sleeping/zonked-out.

Also, unnamed side-effect - strange dreams at night. Perhaps connected to the anxiety. I wake up and never want to sleep at night again.

So, this is how I spend my last weekend before starting chemo again. I am *very* cross. Or do I mean upset? Thanks to the Princess Oncologist I spent the last small amount of time before I was wiped out by chemo being ill anyway. Instead of going out and doing something nice with the Dear Other. Instead of going to the Bluebell Wood at Coton Manor Gardens. Which I really love and wanted to do and now I've missed it and I may never get another chance. If I didn't feel so shit I'd be raging. Instead I'm just crying. I think I thought I'd finally have the courage to do the whole proposing thing - since the Dear Other obviously prefers to wait until.....what? Until I'm dead? I have no idea.

So, that was 3 weeks ago - I think. And 21 days later - guess what? The patches still make me drowsy and I've done plenty of throwing up and I never want to eat food again. Or smell it. Dear Lord, please don't make me have to smell it. Or talk about it. The Dear Other and my Papa will keep asking if I'd like this or that or the other and it makes me not want to eat a solitary thing. Except, having an empty stomach makes me queasy too. So I have to force myself to have something. Ugh.

I had the first chemo about 10 days ago. They managed the get a canula in. I was remarkably calm about it all. Amazingly. They filled me up with anti-sickness steroids beforehand and I was fine the day after. The second day after I was horribly queasy and throwing up. And, of course, they'd sent me home with more steroids and the useless anti-sickness drug Domperidone. Which does precisely *nothing* for me. And I refused to take the steroids because they make me anxious and agitated. Seriously. Even now (probably from the Fentanyl) everything seems *LOUD*. Pots and pans in the other room. The Dear Other walking around. The phone ringing. It makes me start and my heart start pounding as if someone just set off the burglar alarm - in my earhole. The other day, one of my neighbours was dropped off outside by a friend and they were chatting, their kids screeching, the car still running - agitation from me, whilst trying to relax and sleep. Suddenly, someone accidentally leans on the horn of the car briefly - I scream. I felt like I'd literally hit the ceiling with shock. So, I can't take anything else that will make me more anxious.....I just can't. So, Macmillan nurse calls in script for Ondansetron. Which seems to work.
Since then, each Fentanyl patch seems to have caused nausea and often actually being sick. The damn thing means that 2 days out of 3 I'm feeling shit or at am at least sleeping. And my shoulder stills hurts anyway. Not as *much* - I'll give them that; but it's not some magic thing. Plus, since starting the patches half my lower lip and gum and chin have gone numb. Which is weird. And irritating. Very irritating.

My chemo cycle is a slightly odd one. Each cycle actually has 2 parts. You have the first go with 2 drugs and then 8 days later you have another 'top-up' of just one of the drugs. So I went in on Friday to have the 'top-up'. They took bloods first to see how I was reacting and surprise!!! My blood counts were too low to give me the chemo. In 8 days my neutrophils (the part of the white bloods cell count that fights infection, I believe) had gone from 2.49 to 0.65. Not good at all. They won't give chemo unless that count is over 1. When I had neutropaenic sepsis in 2005 after my very first round of chemo I think I was down to 0.1 or 0.2 at one point. But still, not far off. However, I didn't have a fever or a sore throat or any other obvious infection so they just sent me home. I, of course, was very worried because it was all feeling a little deja-vu; and I Do Not Want to end up in the hospital again. I Do Not Want to be on that scary ward with all the cancer patients or in isolation again. Or to have Neutropaenic Sepsis again.
I'm still worried, to be honest. I feel totally wiped out and weak and tired. Having a wash utterly exhausts me. Yesterday my Papa spent half an hour combing the mats and tangles out of my hair - because it had been pulled up on top of my head for over a week and was an utter rats nest. It's got to come off - be cut really short again because I can't cope with it; but I'm not up to going out to the hairdressers. Or probably even managing to sit there for an hour while they cut it. I'm starting to feel like just grabbing the scissors and hacking it off myself. Except, of course, my shoulder wouldn't let me get my right arm up for long enough to do it.

When I'm not zonked out, unable to keep my eyes open I read a bit. The Sweet Camden Lass is keeping me stocked up with books - hoorah! I am being very careful not to read her books when I think throwing up is on the cards. Coz that would be tragic. And rude.
In the last 3 weeks, other than 2 trips to the chemosuite where the Dear Other drove me there, I have been out of the house precisely twice. For little walks round the square outside my flat. I knew it would likely get like this eventually - I hadn't counted on it happening straightaway.

So, pretty crap. That's how I'd describe the current state of affairs. I have no appetite, I sleep a great deal, I throw up, I panic about eating and start at noises, I read, I can't bring myself to even try knitting - I just....don't seem to want to, I cry every time I have a wash, I don't go out (have to avoid any germy people anyway), I cry every time I have to go to the hospital, my shoulder and neck hurt despite the Fentanyl, I've thrown up paracetamol twice, I wear my pyjamas for days, my hair's a disaster, I feel utterly disconnected, my face has no capacity for expression - or that's how it feels; like it can't even pretend a smile; paralysed, oh, and I have bald spot the size of a penny on my head - odd, I can only lie on my back comfortably - but I want to curl up on my side; into a tiny ball, I rock when I feel too bad; like a crazy person and sometimes I just wish this would all end now - that I just wouldn't wake up tomorrow. Done. Dusted. And then some days are better and I don't think that.

I don't think I'm doing too well really. Sorry. But I'll try to keep going Winston (and the rest of y'all), I'll try.


Anonymous said...

All this sounds awful.
I can't even begin to imagine what it's like :(. I just hope the your current chemo gets finished with quickly so that you can start enjoying life again. What a bummer that pain medication is so difficult to stomach. I've never been able to handle anything more than mild pain killers without throwing up and feeling shitty, so I really feel for you.

*sending - feel better thoughts - your way*

Lauren O'Farrell said...

Blimey. They're just not letting you have it easy are they. Who 'they' are I have no idea.

You are truly amazing. But I suspect you hear that a lot.

I'll keep reading if you keep writing. You're very good at it.

Take care xxx

Ciorstaidh said...

Had the Princess Oncologist perhaps forgotten how interesting you are when it comes to drugs? :-P

Tell your white cells it's rude to hide from the testing - and if you rock through Sweet Camden Lass's entire collection, by all means attack mine (will email you my current book list, it's a bit topsy turvy at the mo).


Sweet Camden Lass said...


Once the flat is no longer a source of contagion (I think the weekend will see us perfectly clear), I shall pop round. I can bring some nice soft earplugs (so it's quieter) too and in the meantime will see if I can find a lovely person to come round to you for a trim so that when you're in the mood, a phone call can be made and it's easier. I won't be able to cut it short enough for you to be less tangled.

Why yes, I am coming All Over Practical at you (but it makes me feel less useless). Pick and choose what you fancy.

There's also something entirely wrong about an anti-sickness drug that has a name similar to a brand of champagne.

Books is books: but I do appreciate that you're taking very good care of them. That's lovely of you. Thank you.

*sends cushions and hugs*


Anonymous said...

This is about the fourth time I've come back here, before knowing what to say. I agree with Lauren that I'll keep reading if you keep writing and also with SCL about it being that there's an anti-sickness drug that has a name similar to a brand of champagne.
Am coming up to London twice this month and would really like to see you. Am quite happy to bring pyjamas and books.
Stay strong, we're all sending you our love, hugs and thoughts.

L xx

Anonymous said...

I check up on you everyday but am one of those just rarely post...Why?Brcause I really have no idea what you are going thru and don't know what to say.You are my prayer list and God does answers prayers.

You are one tough and brave young woman.....which I'm sure you know that!....Keep up the fight.....lots of healing hugs,Karen

Dorothy said...

Oh my God I'm so sorry and don't know another thing to say except I still look at my shawl and remember you sent it with love and kind thoughts.

Thank you again.

Hugs and blessings
Dorothy from grammology