Tired! Tired tired tired!

Between Sydney and the beginning of round four of chemo yesterday I was doing pretty well; I got out of the house a lot and saw friends and discovered a new cafe and ate some lovely food. On tuesday of this week we had a meeting with my oncologist to discuss the sydney trip and what our doc thought of the sydney doc's suggestions. My oncologist agrees with the sydney doc that there is no literature to sugest that High Dose Therapy would be very effective for someone my age (I'm a bit old, oddly enough). Basically, we're going to go on as we have been.

In three weeks instead of starting my fifth round of chemo I'm going to have some CT and PET scans, and my doc will have a chat with the surgeons who would be doing the procedure and show them the scans/reports and if they're happy to operate (they wouldn't go near the primary site at the beginning) they'll book a date. Its possible that that wont be for a couple of weeks (they get so busy) so if thats the case I'l have the fifth round of treatment after all in that space. I'd like ti think I'd get a break from chemo after that, but considering I had a four day break between the biopsy and the beginning of chemo at the start I dont think its likely.

On tuesday, the iphone I ordered last friday arrived! Its very exciting. My dear friend Hannah is right, owning a smartphone immediately improves your quality of life. Its excellent and very pretty. And matches my macbook beautifully.

I started chemo yesterday with lots of antiemetics and my accupressure wrist band, and so far I haven't had any nausea which is fantastic. Maybe its the wrist bands after all? Or maybe its the iphone!! Because I'm going to get the stem cell transplant I'm in a special little room down the end of the treatment room with the others getting the process. I saw one today, as well as a similar process yesterday. People seem mostly to sleep through it. They got the cells all in one go, and the guy was much older than me, so I have high hopes that it will be just the one 5 day procedure.

About half an hour ago mum and dad came home with a lovely digital slr camera. I'm really looking forward to having to energy to play around with it. It's an ideal hobby for me to take up- easy to practice and work out and play with and doesn't take a lot of energy. And its creative, which is something I miss.

But yes, I'm still eating, though I'm extremely fatigued tonight. I was using my iphone for internet for the last 4 hours because I didn't have the energy to pick up the laptop sitting on the coffee table by the couch. After snoozing on and off all this time I'm sitting up and chatting and blogging and everything. But still very sleepy. I hope this is as bad as it gets this round (not likely, but it'd be nice).

Hoping to be up to having visiters a bit earlier this round! And maybe if there are a few days free before surgery a brief trip to adelaide if jane isn't too sick of us.

Hope everyone out there is well and happy and living their lives and everything xx

Sydney

I am heart broken. We went all the way to sydney (because it so far from home...) and we were all too tired after the dr appointment to get any shopping done :/ Most disappointing. It was a very early morning for me, we left at 7 30 and reached the prince of wales hospital at 11:10, 5 minutes before our appointment was scheduled. Naturally, they were running late so we were waiting a little while - but not nearly as long as at home. It was alright though, I just snoozed on a couch trying not to notice how dirty the hospital looked compared to TCH.

I quite liked the Dr- he was informative and upfront and not patronising like so many dr's. He clearly knew his stuff.

He doesn't think High Dose therapy is appropriate this round and should instead be used if the cancer does wind up coming back. This is quite a relief- though of course his opinion isn't the deciding factor it really does sound like it wouldn't be very useful at this point. He thinks surgery is a definite yes, as is radiationtherapy. Surgery would be asap after I finish the fifth round of chemo. Radiationtherapy would be (this i all in his opinion of course) over an extended period of time to really eliminate the bone metastases.

However, because this is much more common in pediatrics, he's going to consult pediatric oncologists in the hospital who have more experience in the treatment (its treated the same way across age groups) and will call us later this week or early next week. This fits well- means we'll have everything he can give us before I go back in for chemo and see my oncologist here. Then I suppose they'll start making a decision as to what they think is the best way to proceed.

Getting back to normal again

Well, it's a new week and I'm feeling much much better than I was last time I posted. I dont have a lot to say, other than I'm feeling like myself again and energy is improving and I'm not sleeping 12 hours a day anymore. Got out of the house a bit over the weekend, seeing Source Code (pretty good, do recommend) and then a failed shopping adventure on sunday (my stomach was not in the mood).

Next tuesday I'm heading up to sydney with the parents for an appointment with an oncologist at the Prince of Wales Hospital up there for a second opinion. Maybe they have some magic cure they're keeping quiet about. Fingers crossed. Other than that and an appointment with my own oncologist sometime before that (should book that...) I dont have any medical stuff for two and a half weeks, which is wonderful. :)

And then there are days...

when all you can do is sleep, cry, watch bad television and remember that no matter what you are loved.


You just have to think of all the people you have in your life, all the positive things they bring to your world.

Focus on the things you will get to do when you are better and how much more you will appreciate them because of what you're going through.

Remind yourself, that though there are hard times - horrible times - it is still time, here, with the things you love and that is precious. Chances are that you will get better and you will have lots more time.

Though there are potential losses, and big ones at that, there are ways around them and there is no use crying over what you have not yet, and may never lose.

Dont worry about the transplants or surgery or next round of chemotherapy, think of the 2 and a half weeks you get to spend with your friends and family and the iphone you intend to buy with government money.


Mum's right. I do feel a lot like Frodo. But I get little holidays. And better food. And prettier feet. And soon, an iphone.