Wednesday, 16 May 2012

Big hopes

Do you have big hopes for something? Something big? Or even big hopes for something little?

At the moment, my big hopes revolve around a trip down south this weekend with MR.  We haven't been away anywhere since January last year (not that long I know) before I got ill.  But a Whole Lot Of Shit has happened since then so it really feels like For-Eeeeeeeee-Ver.  And a weekend away is really just what we need.

Unfortunately, my liver is being a Super Poohead.  It seriously has some whinging issues.  Noooo, I don't want those drugs, I'm going to sulk seems to be its fairly constant cry.  They had to take me off the antifungal drugs a few months early because my liver just wasn't coping.  And now I've started on my leukaemia drugs and it is having quite a similar whinge.  Now, I know I really shouldn't complain because my liver is doing enough for both of us this liver saved my life.  I know.  I am Really Truly Grateful.  Even though I do sound a bit ungrateful, I'm not.  Just venting.  But I would just like a bit of a break from elevated liver function tests and blood tests.  In the past 4 weeks I have had 16 blood tests.  Two weeks of Mon-Fri tests and two weeks of three times a week tests.  I am tired of blood tests.  My veins are Very Tired of blood tests.  I managed to convince the doctors that this week I only needed tests three times rather than five, even though my ALT (which for those of you not in the know yet is part of the liver function tests and should be below 35) doubled over the weekend from 71 to 141.  Doubling is not good.  I am nervous about tomorrow's blood test results.

The lack of stability and forward planning options are starting to get to me.  I want to book our favourite bed and breakfast place in Dunsborough, Newberry Manor, but on the weekend I thought, no I should just wait and see what the doctors say on Monday at my appointments and see what the blood test results are.  And then after talking to them on Monday, now I have to wait and see what Wednesday's results are before booking.  And then depending on what they say then I will have to wait until Friday's and we want to go down south on Friday straight after my morning blood test.


In good news however, because life is not all woe is me, my income protection money finally kicked in, only 7 months after I stopped working (but we won't go there), and I got a big lump sum back pay.  Lovely.  I also got told I could finish up on two of my medications so now I am down to 8 tablets in the morning and 7 at night, seems like so few - oh how times change!  I got free tickets to the West Australia Ballet for tomorrow through the Leukaemia Foundation, although it is a lunchtime show so I am going solo as I couldn't find anyone interested and free at that time.  And in particularly good news, my new leukaemia meds haven't caused any nausea (touch wood) and while I have been waking up with a headache every morning and puffy eyes, those side effects are manageable and the fatigue side of things hasn't been too bad either.  I've also started doing a bit of babysitting/tutoring once a week for a few hours with a 3 year old boy who has some speech delays.  Right up my alley! So it has been nice hanging with kids again and planning some ideas and using my brain in a workish sort of way.  Providing everything is stable I'll be heading back to work next term, just one day a week to start off with and then if I feel up to it I'll put my name down for relief.  

So fingers crossed for tomorrow's blood test results.  Big hopes there too.


Sally said...

Well I've been whinging lots about a head cold... So please feel free to complain about that liver of yours. Geez, if you can swallow the pill then the least your liver can do is just take it!
As for planning... Mmmm... The silver lining is that by the time you have kids of your own you'll be old hat at relinquishing control and giving up plans. You'll be a pro... And I reackon that's one of the hardest mama lessons.
Do hope you manage to get away though. You do truly deserve it.
...have fun at the ballet... I'll try not to sob at O's health nurse appointment and E's OT appointment. I'll try to be grown up about it... But sometimes its hard.

CurlyPops said...

Oh crappity crap crap! I think you should go ahead and whinge as much as you like.
This is the bit about transplant that people don't see - all of the follow up treatment/tests/drugs/side effects. It seriously sucks.
I'm keeping my fingers and toes crossed for our blood test results and yippee for income protection!

Baa-Me Kniits said...

Oh you can whinge as much as you like, you deserve a break. I hope you get away for the weekend and your hot chocolate. I too will be thinking of you at the ballet, I would have come in a heartbeat and can totally relate to Sally's comments. Fingers crossed for your blood test tomorrow. I'm off to check out that Secret Garden readalong on your sidebar?? Looks interesting :-)

Anonymous said...

Yay for income protection money! I am so glad to hear about the tutoring. I think it is awesome that the thing that is 'up your alley' naturally involves helping someone else too.
Boo about the failed weekend away :(

I've nominated you for a Liebster Blog Award...

Maggie said...

I hope you did get to go away for the weekend. I would be complaining if I had even a smidge of that going on.

2paw said...

I think whining is quite appropriate. It is a really hard time i your medical life and no wonder you get cross and want things to be right. I hope you blood test results are fine and you can go away for your mini-break!!
Hurray for having money and how wonderful that you will be going back to work for a little bit every week. You lucky thing!!!

Amanda said...

Whinge away Megan - I think everyone will agree you're more than entitled to with everything you have to deal with at the moment. Glad to hear your income protection money has kicked in and you're doing a bit of tutoring too. I'm hoping since you haven't been online since this post you managed to get away down south for a few days x

Michelle said...

Ow lovey sounds like your having a really tough time. I hope you can book that trip away soon, sounds like just the thing you need. The other mandatory thing is to take yourself shopping with that payout and buy yourself something that will make you smile x