Round 9 Day 11 PET Scan no.3

I thought I was being smart by booking a PET scan at a slightly later time in the morning. That way I thought, I can have a sleep in and not be kept waiting for the stuff they inject me with to arrive from Melbourne like last time.

Well I did have a sleep in, which is the best way to skip breakfast if you have to. And I don't like skipping breakfast! I also skipped my usual morning exercise routine, as you have to avoid strenuous exercise before the scan too. Not that my exercises are too strenuous. Better safe than sorry though, and I told myself I would do them after I've eaten after my scan (without a doubt, eating would be the first thing I would do after my scan).

Sleeping in is not difficult for me, and it was quite refreshing to sleep in with a sense of achieving a goal rather than feeling guilty - perhaps I should schedule it in more often! 

We arrived at the hospital in good time. And the waiting began. Then I get taken through and Dave can't follow due to all the radiation. More waiting in my little lead lined room. Then I get my cannula put in. Then more waiting. Then my cannula gets attached to a tube, and the hour long process of uptake begins, during which time I should move as little as possible. I'm getting really good at that - I nearly nodded off, but as I'm not even able to play on my phone I did find it a rather slow hour.

Liverpool St was closed for this crane to do its thing outside the hospital today.

After that the tube gets removed, I'm sent off to the toilet to empty my bladder, then another wait during which time the cannula gets removed. 

Then the PET scan. I was a bit worried at first as my shoulder felt a bit uncomfortable - you have to put your arms above your head. 'This is only going to get more uncomfortable' I thought. 

I fell asleep.

Then the last little wait. They brought be a sandwich and drink. I was hungry, but not that hungry. I had Dave's cooking waiting at home for me.

Chicken and tuna, apparently.

My chemo tablets have to be taken twice a day, after food. Ideally at around the same time each day. I usually have my first tablets after breakfast, but today I didn't have them until after lunch.

And I didn't do my exercises later.

And now we wait again. For the results. We'll find out on Thursday when we see the oncologist.

Round 9 Day 8

It's been a busy (and productive) week. I've had lots of appointments, and today I'm enjoying a day with no commitments.

I'm starting to feel a real 'fuzziness' in the mornings, a sort of cross between chemo brain and fatigue, and some mild nausea in the afternoon. I suppose these are side effects from my new tablets creeping in, although I'm still also getting some lingering effects from drugs I'm not having anymore.

My stress levels are on the rise again as another PET scan approaches (its this Monday). It's weird - there is nothing bad about having a PET, yet 'scanxiety' is a real and normal thing. Having the scan is a good thing. I know this. All my thoughts are in the right place. But my stress levels are still up.

This has triggered me to reflect on my stress management. I've been a bit slack on meditating and blogging lately. Time to get back into it! Watch this space!

Here, have a picture of a sunrise I saw last week. Because it is soothing. And because I'm not an early riser at the best of times, with this new side effect I doubt I'll be up for another one for some time. 

Round 9 Day 1 - No Bottle

So after a 6 week break I started Chemo again today - with a few changes.

• No Bottle

This is a big change! I just have one infusion through my port (avastin) and then I'm done. So I'm much less of a toxic hazard this weekend (I think I'm still toxic, just less likely to spring a leak!?). No pin in my chest. Or stickers. Or tubes. Yay!

• Tablets

Tonight I will start taking chemo tablets. The drug is called capecitabine. I've got to take them after food twice a day, for 2 weeks, then have 1 week off.

Lots of drugs!

• Side Effects

New drugs mean new side effects. As usual with any drug, there is a great long list of possible effects that I may or may not experience to varying degrees. Watch this space....

• Outfit Options

Chemo day's code word is Cocktail party! And that means frocks. No bottle means no need for pockets! I love a dress or skirt with a decent pocket but I have plenty of nice ones without pockets.

Wrap-around dress - no pockets but the top leaves lots of room for access to my port. As usual I have flawlessly coordinated footwear.

We had nice weather today, it was good to have the morning free, and we walked to and from the hospital as usual. I was a bit nervous about what condition my port would be in after 6 weeks without use. Ideally they should be flushed every 3 weeks so 6 weeks is pushing it a bit! But it was totally fine. I had a good chat with the nurse. The smell of hospitals is getting really offensive to me.

No Chemo Today

I've been making the most of my new, longer gap between treatments.

I've been mostly feeling pretty well. I still have small side effects every day, but when my energy levels are good, I can handle those and still try and make the most of life.

Since my last blog entry, Dave and I have had interstate visitors, we've seen Joanna Newsome at the Sydney Opera House, we've visited interstate, and celebrated the Hottest 100.

Here's me (looking slightly crazy - or do I always look like this?) straying from my diet restrictions and enjoying an ice-cream. 

And it was fantastic. If you're only going to have one ice-cream this year, I recommend pepperberry & leatherwood and choc in a homemade waffle cone from The Chocolate Trading Co in Richmond.

I was booked to start round 9 of chemo today. I try and keep in mind how lucky I am to have access to this treatment. But that didn't stop a little part of me not wanting to have it.

And then, on Wednesday after my blood test, I started feeling unwell. The main symptoms being dizziness, light headedness and a bad stomach ache. I worked in the afternoon but I probably shouldn't have. I thought I'd got over doing things like that, I guess old habits die hard.

On Thursday I cancelled my shift at work, and Dave had to pretty much drag me out to my appointment with my oncologist. She checked me out and got me to have an x-ray, which showed up nothing. She told me not to go ahead with Chemo today though. And I felt, among other things, a little disappointed. And relieved. And scared. 

Now I'm not having chemo until the 19th of Feb. And that makes me a little disappointed, and relieved, and scared. My oncologist has assured me that the delay will make no difference at this stage in the effectiveness of the treatment. So really I should just enjoy the reprieve. I'm continuing to work on my fitness, doing my Home Exercise Program everyday (I didn't manage it on Thursday when I was feeling pretty rotten). I need to refocus on my diet and walking, these things have gone a little astray since my last round.

I'm feeling much better than I did yesterday, so I hope the trend continues, giving me time to build up my strength ready for the next round.

Round 8 Day 9

I realized with a bit of a jolt yesterday that it was 6 months to the day that I got my first symptoms. It was a bit of a strange feeling. I feel like I've missed the bus that had my life in it. Everyone around me is on their way to where they're going. And I'm not. I'm left behind. Its not a good feeling.

I walked to work the day before. I almost didn't as it was a hot morning, but I'm glad I did. It's a bit tiring when stacked against working too but I'm glad to be able to do it. I miss walking everywhere. I miss a lot of things these days.

So today brings us the sad news that Alan Rickman has died of cancer at 69. Like Bowie, it seems that no one knew he was sick. It also seems that at this point it's not been announced what kind of cancer, or how long ago he was diagnosed. In some ways, that kind of info doesn't matter, and in the past I wouldn't have even worried about it. Now I want to know.

And I want a cure. Now please.

This is the photo of the moment, it's all over social media. I have slightly mixed feeling about it. It's a cute tribute I guess, but it doesn't really help them or anyone else with cancer.

Round 8 Day 4 - Ashes to Ashes

Lets get the bad bits out of the way first:

• I spent all of Saturday in Bed. All of it.
• I spent all of Sunday morning spewing up.
• My skin is like paper. Thin paper. Really gross thin paper.
• David Bowie died today.

I don't like to focus on the negative, but sometimes it helps to acknowledge it. I'd already started writing this blog when I got the news about Bowie. Shows just how trivial my other grumbles are.

I'm not going to attempt to say something profound about his death or his life, I'm terrible at that. I am really sad about it, but I can't really put it into sensible words.

What I can find the words for is much more selfish. Bowie's is the most publicised cancer death I've encountered since my diagnosis. I have to admit that in some ways I've found it confronting. The news is still really fresh at the moment. Already I'm already struck by two things.

• The acceptance. It's hard to explain, I mean is there is no outrage, no shock. Just acceptance. Cancer. Game over. People aren't asking how his death could have been prevented.
• People in the media using the phrase 'long battle of 18 months'. 18 months is not a long battle. It's brutally short. I know no harm is meant but I don't like it.

OK grumbling over. Now the positive stuff:

• It's only day 4 and I'm up and about. I've had a pretty nice day.
• The nurses were really good about the spewing when I went in to get my bottle removed yesterday and organised some new meds which did the trick.
• One of our sunflowers is flowering!

I could go on all day about the positives, I have so much to be grateful for. Here's one last thing to be grateful about, from Actor Simon Pegg:

"If you're sad today, just remember the world is over 4 billions years old and you somehow managed to exist at the same time as David Bowie."

Round 8 Already?

So today I started my 8th round of Chemo. Its fair to say I was a lot more organised for this one than the last. I got my blood test done in a timely fashion, I took the bins out, I arrived at the hospital on time today.

It's a lovely summer day here in Hobart and Dave and I walked to the Hospital, for the early time of 8.30 am.

Now that they've removed one of the drugs, the whole process is much quicker.

I usually feel some mild effects as soon as treatment starts. Today I felt a bit queasy before they'd started! So I guess I can't blame the treatment there.

The nurses always do a great job and they have to ask me lots of questions about how I'm going each time. I'm in a funny place between old habits of ignoring little aches and pains, and being super alert and paranoid about every little ache and pain. So I end up giving the nurses lots of detail about things, and then tell them it's nothing! 

Dave and I walked home through the Domain, which was really nice. We took it slow and it was beautiful morning. 

I've felt a little tired today, but I've been able to be up and about all day, even going out for another little walk in the evening with Dave, Mum and the dogs. We saw the Aurora Australis ship heading up-river.