Round 12 Day 1

I haven't blogged for 3 weeks - not since my last treatment.

I meant to a few times, but this last 3 weeks I've been struggling with fatigue. It's still not as bad as it was before, during my last treatment, but it's a bit more erratic. Whereas with the previous treatment I knew when I would be sleeping all day and when I would have nearly normal energy levels, this time it seems to strike at random. Which is a bit inconvenient. I've had to cancel quite a few commitments as a result.

I spent the last 2 weekends in bed. And the weeks doing the absolute minimum I could get away with. And sometimes that equates to spending all day in bed.

I felt pretty good yesterday, like I'd turned a corner, and was looking forward to going to yoga this morning.

This morning was a write off. First I cancelled yoga. Then I still couldn't get up so I cancelled the gym. Next was chemo, I wasn't going to cancel that, but if it wasn't for Dave I probably wouldn't have got myself there in time.

We even managed to walk in as usual. A little slower than usual. And it was a beautiful day. I was really happy to be out in the fresh air and sunshine walking with my husband.

We arrived just in time for my appointment. And that is when we remembered the Emla cream! The nurse let us put some on then and she dragged out the prep as long as she could to give it time to take effect. 

It didn't. Oh well.

Here I am looking quite sleepy while having treatment. I don't love this picture but I'm really pleased I'm not still wearing my pajamas - it was a bit of a close thing today. The dress I'm wearing is clearly not a cocktail dress, but it is actually my favorite dress, I've had it since the 90's - I bought it from C&A, I think it was 8 pounds (What's going on? My laptop seems to have no pound sign key?). 

After treatment we walked home again - the weather cooled off a little from earlier but still very nice, and then I took it easy for the rest of the day, resting at home and taking lots of pictures of the sunset.

Like this one.

Round 11 Day 1: LOL?

Round 11 started today. At 8.30am. That's super early for me these days.

Since getting sick, my old morning routine has changed. It used to take me an hour from getting out of bed in the morning to me being ready to walk out the door, sometimes less.

Now its 2 hours. But when I have to be out the door at 7.45am, I revert back to what is basically my old routine but with more drugs, and can get away with being ready in just over an hour.

As usual, we walked in. It was a warm cloudy morning, nice for a walk.

It was surprisingly busy in the chemo ward when we arrived, but we didn't have to wait long before I was called to my chair.

After the time I forgot my emla cream and had to go without, I always make sure I set an alarm on my phone to remind me to apply it an hour before my appointment, and by the time I'm ready for my infusion the numbed skin has gone white, which is reassuring to me as it means its worked.

However this time I could feel the needle as the nurse inserted it - which I told her. And the reason - she'd missed my port!

So we had to try again. I could still feel it going in - she was getting my port but had moved my skin so was missing the numbed area. I told her I could still feel it and she stopped.

Third time lucky. Needle in the port, through the numb bit of skin. Phew!

I feel a bit mean blogging about this because I don't want to make the nurse look bad - she is really good and really nice. She just missed my port, that's all. It's actually kind of funny and I can't resist sharing - I'm not valiant enough to get 3 jabs for the price of one without telling everyone!

After the drama with my port, it then transpired that my Avastin had not arrived yet. It turns out that, like the stuff they give me for a PET scan, it's delivered from Melbourne daily. The carbon footprint on my treatment must be terrible!

So I had to wait around for my drugs,  I could have spent longer in bed! But I had my lovely husband for company and double J on the TV and a big comfy chair so there are worse ways to spend a delay.

It's traditional for me to wear a dress to chemo, but  I thought I'd mix it up a bit this time and wear my Active Wear - as I was going to the gym later the same day, but also partly inspired by this funny video.

https://www.youtube.com/watch?v=CYRENWT8lz8

Once my drugs arrived, treatment did not take long, and Dave and I walked home again.

Later I went to the gym, my first day at the gym with my new and improved exercise program. It went well - which means it went extra well, because chemo followed by the gym - how awesome!

I was very tired for the rest of the day, but mostly because I'd got up so early and walked to town and back and been to the gym, and less because of the avastin. I think. I'd like to think.

Little Fluffy Clouds

• I had two fillings earlier this week. 

My dentist is excellent and the whole thing was as un-scary as it can be for someone like me.
I now have a new admiration for the numbing agents they have at the dentist. They work incredibly quickly. I mentioned this to the dentist and he explained that the gums can take it up much faster than skin (I was comparing it to my experiences with emla cream, which takes an hour). He also said he's allowed to use stronger stuff in Australia compared to the UK (he's an Essex boy originally!)

But still - needles. Just like my most recent blood test, I'm getting braver and didn't give prior warning that I'm nervous about needles.

But I did close my eyes (looking away doesn't quite work when the injection is in your mouth.) And in my head I'm thinking - 

'Try and relax, think about something else. 

Think about something nice. 

Think about.... little fluffy clouds'.

And then my brain goes: 

'little fluffy clouds, little fluffy clouds, 

li li li li li li li li li li li li li li li li li li li li li little fluffy clouds' 

and then this classic by The Orb is lodged in my head for the rest of the day. Which is fine. This song is magic.*

Of course I have to include some cloud pictures. This picture is extra awesome because as I was taking this picture they started playing the song on the radio.

• I've given my sleeping habits a bit of a review this week. 

I was trying to act like a normal person and have 7-9 hours sleep a night. It didn't feel like enough. And you know what, I'm not a 'normal person' (I never was, but you know what I mean). So now if I don't have anything planned in the morning (and I try not to) I don't set an alarm, and sleep until I feel ready to get up. 12 hours sleep seems OK. So I'm sleeping half my life away.

• In new heights of slobbery this week: 

I've learnt that I can do my home exercises while wearing my Ugg boots, and if there are no clean knives, I can spread butter on my toast with the back of a spoon.**

Another cloud pic because I love pictures of clouds and songs about clouds.

• I have this strange sensation of oversharing with this blog. 

I feel like some personal information is seeping into it. This blog is about that cancer thing, after all. Here I am talking about songs I like and my slobby behavior at home. But I'm also enjoying writing this blog, and I can't forget, that everything in my life is about that cancer thing now. All the time.

*If you know what I'm talking about, it's probably stuck in your head now - best play it out. Turn it up loud.

If you don't know what I'm talking about - check it out! If it's not your thing skip to about 1 min 30 secs to see what I'm on about.

https://www.youtube.com/watch?v=FHixChYgGRI

** We only have 2 knives that are good for spreading, the rest are too pointy, so it's not like all the knives in the house were dirty, just 2. And I don't like to just wash one thing as it wastes water.

Round 10 Day 6 - The GI Cancer Forum

So the big news this week is that Wednesday was the day of the GI Cancer Forum.

Being a Wednesday, I was also working in the afternoon, which worked out very well - the forum was just around the corner from my workplace, and started shortly after I finished work.

Which meant I already looked smart (well, smart for me anyway).

It was a really great forum. Were do I start? The speakers were all excellent. Both the Oncologists went over some really important cancer basics, I'm still learning a lot. They also talked about some of the exciting advances in immunotherapy taking place these days. I get very excited and eager when I hear about this stuff, but I don't know if or when any of it will reach me. I wish I could just camp outside a shop for a few days like people do for the latest iphones!

Some grim stats - despite GI cancers being the most common cancer, its survival rate is much lower than some other cancers. Perhaps we need ribbon too. Anyone want a brown ribbon?

It was great to listen to my own Oncologist talk too - she really knows her stuff! The other speakers were an Exercise Physiologist - love that stuff, and another cancer patient who did a really lovely talk about her own experiences.

I met some really great people, caught up with people I already know from the cancer circuit, and I had friends, family and colleagues attend in support - which was really wonderful.

And I think my talk went OK! It wasn't too painful for me anyway, I've been given some nice feedback since.

Me doing my talk!

This week has left me a confusing mix of exhausted and inspired. I'm trying to give myself a little rest to gather my thoughts and some energy, in the hope that I 'spring into action' next week. What action that is I don't really know. Yet.

Round 10 Day 1 - Ready, Fire, Aim!

My stress levels have been very high this week.

I've been pretty busy, and in some areas of my life - productive. Other areas - not so much.

Highlights Include:

• The house beginning to look like a tip shop.

Yes I know, it doesn't matter. And yet having to climb over piles of washing to get to the bed is not good for my stress levels. I'll put it away. Sometime.

• I had an online rant.

No don't try and find it - I hope no one does. I was feeling stressed and I read something that upset me and lost the plot. I'm not proud of myself. I put a short and not-constructive comment on the website (which I shouldn't have done) then found a nice anonymous forum to have a really grotty whinge. (still not ideal - I should have written it on paper then composted it, but its done now).

• I went to a really good forum.

Put on by the cancer council, they had an exercise physiologist, a dietitian and a psychologist. Most of the material I was quite familiar with already, but I enjoy going over it and making sure I'm on the right track and really fine tuning my self care.

• I'm preparing to do a presentation

The GI Cancer Institute are putting on a forum in Hobart. And I'm doing a 5 minute talk. I'm still surprised and confused that they have asked me while gladly accepting the opportunity. I haven't finished preparing what I'm going to say yet. Given that I share here regularly and can waffle on for ages in person, I've been surprised at how hard it's been to prepare for. 

• I started round 10 today. 

This new regime has been pretty kind to me so far. I'm enjoying that enormously, and using the opportunity to ramp up my fitness.

Here I am on the way back from treatment today. As usual, Dave and I walked there and back, and up and down the 8 flights of stairs. I'm sort of starting to get a bit of attention for this at RHH, which I'm kind of enjoying. 

I love this dress even though its got no pockets. I'm still loving the 'no bottle' novelty. And I have plans this weekend, other than sleeping. I think this post reads a little gloomy, and while I have felt challenged at times this week, there is still lots and lots of joy to be found. Have a nice weekend everyone!

Round 9 Day 14 - Results

I just wrote a long blog and then scrapped it!

Its fair to say I am still on the emotional roller-coaster that takes you through Results day.

The results are not bad. Only a small amount of growth is detected. My oncologist was very upbeat about it. She says there is no need to change my treatment at this stage.

Dave and I made no plans or commitments for the rest of the day, which was smart.

Here, have a picture.

Round 9 Day 13

I just realised that I'm about to finish my first round of chemo tablets! After tomorrow I get a 7 day break. I wonder if my side effects will clear or will they linger. I'll let you know when I know!

I went to the dentist today. I don't have plain old check ups anymore. Now they are 'Chemo check ups'. Well it is actually the same thing, but having chemo can reek havoc with your teeth and gums so it's more important than ever to keep a close eye on things.

I used to really fear going to the dentist. A lot. Today, I was more concerned with the fact I would have to drive there instead of riding my bike and therefore have to find a parking spot.

The dentist was pretty pleased with how I'm going. I need two fillings, just to start with. Come to think of it, my teeth have probably never been in worse shape. BUT, from what he has seen of chemo patients, I'm doing very well.

He did say that he was seeing a lot of evidence of me grinding my teeth, which is not at all surprising considering the stressful situation I'm in, but also it is surprising as I have not been suffering from any significant jaw pain, which I am prone to.

So I have to start wearing my splint. I don't like it. But that is my bad attitude talking. I'm lucky to have one. Such a simple and easy solution. And he also suggested I start flossing twice a day not just once. 

I also had my blood tests today. Not just my usual pre-chemo tests but also another one from the geneticist. It came to four vials of blood! I had it from my right arm as my left is still a tiny bit tender from the cannula on Monday.

The blood test today actually marked a bit of a milestone. For the first time ever, I did not bother telling the blood-test-person that I'm afraid of needles. I recognised her from a previous visit so I knew she was nice and good at it (they all are though!). She recognised me about half way through, while I had my head turned the other way, and remembered me.

I also worked this afternoon, and walked there and back. It's been a beautiful and hot sunny day. Walking to work really never stops being wonderful. Walking home is slightly harder work as its up hill, and today when I got out of puff I get paranoid about my health. Which is pointless. And understandable. But still pointless.

Tonight I need to work on a presentation. I agreed to do a short talk at a cancer forum in a couple of weeks. I'm really grateful for the opportunity, and slightly confused that they asked me. And now I'm panicking! It probably just feelings of scanxiety leaking into it. After all, what is the worse that can happen? It's certainly no big deal in the scheme of things. 

So to summarise:

• Bits of me are still in good shape.
• I've become much more chilled out about some things that used to totally terrify me
• I'm starting to worry about some things which there is nothing to worry about
• Walking is still totally awesome.