Monday, July 05, 2010

For the record 2

G'day all!

Another early morning post 8-} This really is another post for me, or anyone else going through chemo, just to say what is "normal" for me.

One of the side effects of something to do with the chemo is poor sleep during the first week after it. I tend to wake up every two hours, whether or not I need to pee. It could be the dexa, it could just be the chemo. Hence another early morning post!

puddings
(I wish I could sleep like these two!)

A new side effect I've discovered is what I suspect are hot flushes. Oh joy! I get awfully hot in bed even though it is fr-eezing out of bed (3C outside, roughly 14C above DH's computer and I suspect less in the uncomputerised bedroom). At the same time as being hot, if I stick too many bits out of bed, I feel rather chilled. If I don't, I overheat to the point of technically needing to go to the hospital cos I am running a fever, though the "fever" abates if I get out of bed. I amnot getting the drenching sweats though so I am not doing them "properly." Thank heavens!

Day Three of the cycle was pretty rotten. Everything hurt in my upper body and four hours of sleep didn't help my mental state much. I managed to have a shower and get out to the Farmers' Market all by myself (DH rolled his ankle the day before and it is all pretty colours!), staggered around there feeling lousy. I then went to a shopping centre to see if the chemists had ankle braces like the one I got in the States - a black contraption with laces and a stiff boot. The answer was yes and no - I found one in a woman's size small. Plus it was SEVENTY DOLLARS! In the States the things are $15-20. They only had stupid elastic ankle braces and most of those were around the $50 mark - I expected to pay about $10 for them! (Another example of things that are cheap in the US being horribly expensive here. It makes me think some companies buy at retail prices and bring them across, or they are fleecing us. On the other hand, things like a lot of the scrapbooking stuff has been reasonable in price, not that I scrapbook of course!) It nearly killed me trawling between the two pharmacies - I had to sit down five times on some handy seats along the way. It isn't as if it is a huge shopping centre either. By the time I got home, I simply put the meat in the fridge and collapsed on the couch for most of the rest of the day. I did manage to make "lunch" aka some basmati rice with a bag of frozen vegies thrown in.

MiL picked us up so we could go to SiL2b's birthday dinner at Lentil As Anything. For those few people reading this who went to Monash Uni Clayton, think Wholefoods only nicer food. For the rest of the world, think vegetarian hippy "restaurant" with communal seating, mismatched chairs, benchlike painted tables and cheap but cheerful surrounds. And apparently great coffee. Plus you pay what you think the meal was worth.

Day Four of the cycle was dreadful. Going out the night before may have been a Bad Idea, though I enjoyed it at the time and the PiLs and the BiL/SiL2b are going away for 10 days and 6 weeks respectively. I had no energy. Didn't sleep well, overheated terribly cos I thought I was cold (that is what my body said, it lied!), ended up having a little Georgette Hayer (sp) decline on the couch for half the day. I didn't ache that much, not like the previous day, though when I did manage to do stuff, I had about a two minute window of opportunity - my muscles and joints get quite sore if I use any particular set for very long. Makes things very tedious.

sleepybobos
Nap time! Oh to sleep well. Yes I could get a sleeping tablet but this will pass, it always has in the past, I just have to deal with it in the present

I have very little cognitive ability currently either. (When God said "Brain?" you thought he said "Train?" and asked for a small blue one.) It is extremely annoying. I'm usually a fairly bright spark but argh. It is possibly related to the sleep problems but I've noticed a decline in various executive functions (like remembering stuff apart from appointments or being able to plan stuff - I couldn't get myself out of a paper bag at present!).

It is affecting our marriage on a number of levels - not just that my hormones are switched right off but also the cognitive stuff. DH relies on me for energy, being extravert and all, but I have nothing to offer. I am rather heavily focussed on me. We are both getting quite frustrated. There is so much I'd like to do, so much DH would like me to do and I don't have the physical or mental ability to do it. I haven't knitted for three days! I did a bit of sewing today and will have to rip out half of what I sewed (once I have the energy). I'm supposedly spinning in the Tour de Fleece but currently I'm on the sidelines awaiting an infusion of energy. I know what I'd like to spin but it just ain't happening. I certainly will not be as productive as last year!

The closest I can describe the tiredness is like just after the flu. You've gotten over the aches and pains but the tiredness remains. Doing anything requires much more effort than normal. Having a shower is a major event and achievement of the day, and probably most of your exercise too. People with CFS or FMS will know what I'm talking about. Plus the aches and pains themselves are pretty special - sitting too long in one position causes ongoing muscle aches but moving is Too Much Effort! It can hurt to breathe - not that I have much option there! My rib joints on my sternum ache, as do various intercostal muscles. I hold my body "upright" by leaning on my elbows, which makes more stuff hurt. Using my back muscles is Too Much Effort!

Here's some grossness for you! I seem to have what feels like a string of snot joining the back of my nose to my stomach, only it doesn't quite reach. It feels like I've swallowed a pill the wrong way and it is bouncing up and down a bit. My mouth feels slimy and often parched - that is the effect of the chemo on my salivary glands and mucous membranes. My tongue has gone white (apparently a layer or two of dead cells which I will then eat sometime on Friday if past experience is anything to go by!) and my ability to taste stuff is minimal (though I did particularly enjoy the sweet potato curry at Lentil As Anything the other night). Oddly enough I can taste meat and enjoy it, though I seem to be a bit off pork. My voice is husky and sometimes I can barely speak at all.

But I do have hair growing back. People see it and disbelieve me but I was almost totally bald after I gave myself the number one and now I have quite a bit of short hair. It feels lovely and I keep rubbing it but it dislikes being rubbed in the wrong direction.

Only a few more days of being craptastic and then hopefully it is all up and up. I am so very glad I don't need to have another round of chemo cos this one has been a doozy and putting up with it all over again in another three weeks? You'd have to drag me into the day unit. I really really can't deal with much more of this. I hate being so incapable of doing stuff, I hate not having a brain, I hate having an attention span of about two seconds. Heck, I even hate having very little in the way of eyebrows or eyelashes (they've continued to fall out during the taxotere - funny how different hair has responded!). I know why I'm doing this, I know what I want the outcome to be, though now I'm done with chemo the doubts and the worries set in - all the horrid what ifs? We have to cross those hurdles if we reach them. Hopefully we won't.

Oh another thing I hate? Constantly worrying about my health and my temperature. My metabolism seems to have gone berserk, possibly hormone related but possibly I have a mild cold. I do have a vaguely sore throat and ear and I'm a little snotty but I've had that a lot during chemo particularly in the first week and around every Friday - it is like the cells slough off once a week or something but before they do, they let me know what is happening. My temperature has been in a certain range through all of chemo up until this round, where it seems like I've had a 0.5C increase. Plus it is currently bouncing around like a yoyo. I hope I don't have a cold cos I'll probably end up in hospital and I don't want that!

Hopefully this week I'll get pics of my chemo queen bedjacket - the weather is forecast to be quite nice, if a little chilly, for most of the week. I'm glad of that cos I don't like having a lovely day like today go to waste and then when I have more energy, having nasty rainy days.

Time to go back to bed. Toodlepip!

anon!

4 comments:

  1. That does sound craptastic! Amazing how much we take being healthy for granted when actually being sick just sucks SO MUCH! I'm so glad to hear you are done, at least with this phase of the treatment. Keep on going, and keep blogging! Love the crown in the last post as well. :)

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  2. Bah humbug to all the horridness, I hope is is gone quickly. I love a little Georgette Heyer decline, it's much more acceptable than a Florence Nightingale one- she went to bed for the rest of her life. (more or less)
    Oh the tiredness. We call it Hidden Fatigue. Today I walked up to my car and I had to have a little rest and I am always looking for seats. I hate queuing when there are no seats. I also wish for you a long sleep and pleasant ambient temperature!!

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  3. My heartfelt sympathy --- hope you're feeling more chipper soon --- don't push too hard --- rest up and recuperate and give yourself permission to be sick for a bit. Hugs.

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  4. The lack of memory could be from two sources: the sleep deprivation or the hormones. Either way I truly appreciate how you feel about it having been the victim of it for the last three years. Thankfully it has moved on recently and the ability to remember has returned as will yours.
    Hoping that your partner works out how to cope with the change in circumstances, you are very tolerant of his expectations. He reminds me of a stage my Mum went through with my Dad's cancer treatment. She just wanted everything to be normal so she could pretend she wasn't in danger of losing him and every time he couldn't maintain normality it was hard because it was like her potential for losing him became stronger. From the outside it sounds like something similar and in fact something that a large portion of cancer patient partners would go through. It's just hard for you because you are sick and you just need to be sick for a while. His behaviour is perfectly understandable even though it is probably quite annoying.
    *Hugs*

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