Full belly, good company, tra la la...

Just a quickie post.

I am in an interesting cycle. If I get something done - if I achieve something I feel is worthwhile - I feel good. If I feel like I've spent all day sitting around being 'sick', then I feel worse, I feel useless and I spiral downhill rapidly. Unfortunately, if I'm not feeling well to start, then I am extremely unmotivated and usually in pain and discomfort, and unlikely to get anything 'done'.

I probably need a short list of achievable tasks. Oh dear, I need to baby myself. Any suggestions? Things I can do even when feeling completely rubbish so that I feel like I've done something worthwhile?

Just had a fantastic evening chez Amy, Dave and Julie. And I 'achieved' quite a bit today (all houseworky stuff to get ready for our visitors). Given I started the day feeling lousy, I'm very happy about that. I have a nasty cough that I can't explain or get rid of. I'm a bit worried about it - Christmas is next week and I really don't want to get sick. But my chemo doesn't seem to impact my immune system, thank goodness.

Anyway, I wanted to offer my Christmas wishes while I was feeling good and happy and Christmassy, not all whingy and miserable like last post.

I hope you have a lovely, relaxed Christmas, spent with loved ones, and special in whatever way is special to you. May it have all the four Fs - faith, family, friends and food.

May the birth of our Lord be a time of great love and peace for you.

God bless you at this very special time.

With much love,

Jessie xoxoxo

'Tis the season...

Still having a bit of a bad run, but whinging is SO last post. Just very tired and quite emotional too. 'Crashing' a bit as well - ie suddenly so bone-wearingly exhausted that I can't even stand up or finish a sentence. Quite teary for stupid reasons or even no reason at all. Just a bit - I don't even know. I just feel off-colour, flat and unmotivated.

Anyway, Tuesday was the day for the scans... a big day, to find out whether the Avastin is working or not, and therefore whether we keep going.

And while the tumours have not disappeared (which some people were hoping against hope would happen), they have not grown. It is keeping it under control. Thus, it is 'working' and we will keep going. This is good news. We can keep it under control. We'll scan again after another three cycles.

Clem Jones died this week. What a truly good man. He did great things for this town, and great things for so many individuals, including us. A good man, who lived a good life. It's a good epitaph. Vale, Clem. Thank you.

(We went to his Christmas party a couple of weeks ago. I really hope he had a rum ball.)

I hope you are all well. Have a wonderful Christmas, relax, spend time with your loved ones and remember that we are celebrating the birth of a man who brought love, peace, grace and salvation. Not lots and lots of presents :)

Although I must say, that as my first year playing Santa, I got a little over-excited...

Merry Christmas.

God bless,

Jess

Jessie Make Bang Bangs

Usually after a post like that, I write something beautifully brave and inspirational. Well, shove it. I'm still as cranky as a big brother inmate in a house with no mirrors.

I'm in the process of switching one of my drugs. I'm not taking morphine for breakthrough pain any more, I'm taking a new drug called Ativan which is kinda an amazing all in one - anti-nausea, anti-anxiety and muscle relaxant. Like valium but better. I love it lots already; a lot of my pain is nerve transference and muscle tension, so the muscle relaxant works as well as morphine. Hopefully it will make my brain a little less foggy, and it's a hell of a lot better on my poor liver. It does make me sleepy though, but as I take it more and more I'll become immune to that.

I've been very teary and emotional lately. Rarely over the big stuff, just the little stuff. I'm so frazzled over Christmas and I really shouldn't be. It should be a time for peace and joy and spending time with people. But I'm going through another 'I'm so overwhelmed' phase.

I went shootin' on Monday. It was awesoeme. Made me feel so much better. So, whenever I feel lousy, I just need to shoot a gun. I might check out the gun range at Carindale. Ipswich is a bit far to go each time, even though it was totally awesome. Then again, Richelle's up for it, so maybe I'll just go out to Ipswich each week. I'm actually pretty good too. All my rounds hit the target and most hit pretty close - and a couple of bullseyes. It's very meditative... you have headphones on so you've blocked out the world, you have your little set up routine, you centre yourself and breathe as you aim, and then you freakin fire a gun. Heck yeah. Stress relief baby. Pity you can't really do it in short shorts.

I have also devised the ultimate make yourself feel better when everything sucks. It is very simple. You say "Woe, woe, woe is me." In the most whiny, pathetic, whingy, drawn out voice of misery possible. After a couple of attempts, I get a bit disgusted at how pathetic I sound and move on. Try it sometime. (It's a bit more accessible than shootin' stuff too. Although I REALLY liked shootin'.)

Wooooooooooooooooooooeeeeeeeeeeeeeeeeeeee, wooooooooooooooooeeeeeeeeeeeeeeee, wooooooooooooooooooeeeeeeeeeeeeeeeeee is meeeeeeeeeeeeeeeeeeeeeeeeeeeeee.

God loves me no matter how pathetic I sound.

And for some reason so do you lot. Ta for that by the way.

God bless you.

Jessie (Pow! Bang! Pow!)

PS. Thanks Chelle. I needed that.

The Dark Side

I know I'm all brave and inspirational and so well adjusted and all that rubbish. But there is a serious dark side and it's been coming out lately.

I am NOT coping with the heat. I am virtually comatose in the heat - it makes the pain worse, it makes me really stiff and achy and it makes me miserable. I get very sooky and teary. So I am not a happy camper lately. I spent most of this weekend either asleep or in a LOT of discomfort and pain. This morning I cried from the pain - something I very rarely do.

I also think I will stop playing as much chess. It is extremely depressing to have a measurable sign of how much my brain is deteriorating. I lost 150 rating points in the past couple of months. And I'm just missing things. Big things. Like rooks.

I am very much noticing the effects on my brain now. Mama has established a policy of telling me after I've repeated something three times. (I am turning into Nana.) I forget things, I repeat things. I don't remember words or names. I am completely all over the shop. And things are so foggy in there - a perpetual narcotic miasma that makes sharp clear thinking impossible. I almost don't remember what it was like. I used to be so intelligent.

But the Dark Side? I am becoming obsessive about the unimportant stuff. It is not unusual for me to have a freak out at midnight about the need to get the washing done. I'm obsessive about the cleanliness and tidiness of the kitchen. It's really quite stupid.

We think we have worked out what it is though. I am so freaking well-adjusted to the big bad scary stuff in my life (ie the dying bit) that I don't have anything left to cope with the basic kitchen cleanliness stuff. I'm just projecting all my anxiety and worries onto something I can actually change. It is the same thing as when I'm in hospital - my tray MUST be impeccably arranged. It's my way of controlling the things I can control when there is so much that i can't. And I'm not the only one doing it.

I have also started apologising manically for being such a burden. And that is just stupid. I think I feel like I should be the perfect housewife, perfect wife, when it's all I can do sometimes to get out of bed. (Sometimes I can't even do that.) I feel bad asking people to do things for me. (Like get me painkillers or make food.) And I feel bad letting people down if I can't go out. I'm caught in a stupid guilt cycle and need to bust out of it. People who apologise all the time are really irritating.

I love Jason so much - he can see all this stuff when I can't. It is so amazing to be with someone who loves me so much and is a wonderful carer, companion and partner. God blessed me so much when he sent me to that party instead of the movies.

Thanks for the vent - I'd apologise for being a burden but I'm trying to stop that *wry smile*.

With much love,

Jessie

PS I'm wearing short shorts again today which has cheered me up a little.

I like short shorts...

I am currently fascinated by my legs. They are hot. Not just hot. They are HOT TAMALE YOU GO MAMA hot. They are lookin GOOD.

I can wear short shorts. I can wear mini skirts. And not look ridiculous. I am a serious hotty boom boom.

Ooh yeah baby.

The fact that I need to have a terminal disease that eats away at my own body and takes away any desire to eat in order to be this hot does present an interesting hypothetical question.

(While I like being a hot mama, I was doing okay before too and would rather be healthy and enjoying food. Since that is currently not an option, I am going to enjoy being a serious babe. Cause it rocks too.)

I will post some short short shots. And some mini skirt shots. Everyone should share the love.

I also bought a very cool new wig. I will get a picture taken and post. It is great fun.

Bit of a big week really! After the newspaper interview - which came out on Saturday - I'll post it up here tonight - I had the actual Luncheon for Leukaemia on Friday, which was really lovely. It was down at Teneriffe, at Platform 6 I think, and there were some great people there. The fashion show was really good, and some good information from a beauty therapist too. If you're looking for a good fundraiser to do with a work team, or a group of girls, this is a really good one. They're trying to hold them every two months, so get in touch with the Leukaemia Foundation for more information. The food was fantastic - six course degustation - and it was just a lovely pleasant afternoon. Some very nice lucky door prizes and a goody bag for everyone. A great way to while away an afternoon while supporting my favourite organisation.




The weekend was big too... On Friday night we had our church trivia night/end of year concert, which was lots of fun. I love trivia, even if my brain has started keeping things in different directories. Saturday we went Christmas decoration shopping and then we set up the Christmas tree, decorated the house and put up the advent calendar - as in Mama's beautiful patchwork calendar. So the place is looking good - lots of shiny sparkly lights, which is enough for me!

Sunday was a very sleepy day, but unfortunately busy... Went out to Wellington Point to see Jacqui and family before they sell their house out there, and then Beata was a trooper and took the girls swimming so I could get a quick nap in. Very good to see Jacqui and family though.

This week was chemo week, so a bit blah. Chemo all day Tuesday, and been feeling a bit blah ever since. On Wednesday I went to speak at a lunch at the new village - not my greatest ever, I was really tired and not feeling great. Lovely lunch though. On Friday the Foundation had their Christmas lunch for residents which was lovely - anyone detecting a theme here? I've had lunch with the Foundation three times in the past seven days... not bad! I did sing for my supper at two of them though...

Otherwise just spending time with loved ones... Amy and I have instituted sashimi and trashimi night - highly enjoyable. I am happy.

Just don't mention Christmas. I keep getting smug messages from Mama and Beata about how they've finished their cards and presents. Well, I have a to do list. And that's not bad.

It's been good to hear from a few people who read the article in the paper and have got in touch via the blog.

I've been thinking about what makes a good nurse, Ann - it's an excellent question. I think the big thing that differentiates nurses is the ability to see a person, not just a bed number. Every single patient is going through their own personal journey at that moment, and the best nurses remember that. It is very easy to get caught up with the fact that there are eight other patients in the ward with the same thing as you or worse, so stop making a fuss. The best nurses are those who remember that Sally hates needles, or Fred likes to have his wife there when the doctor comes. It's just about treating patients as people, not just patients or numbers or conditions.

But to be honest, the fact that you care enough to try to find out what makes a great nurse already says that you probably are. And when in doubt, just ask yourself "What would I do if this was my mother?" Good luck with it all Ann! Nurses are incredible people - I have a lot of respect for them.

So I'm happy, it's a good week. For the first time in a few years, Christmas is feeling very festive - it's nice to have small people around. And I have discovered why my Santa stocking was always so full - it is LOTS of fun to buy little presents for little girls and I need to control myself!

Over the next few weeks make sure you don't get caught up in the hype or consumerism or 'must do' or 'should do's - spend time with your loved ones, take lots of time for yourself and thank God for his incredible blessings in your life.

God bless you.

Much love,

Jessie xoxoxo