Round 22 Day 1

My first round of the Cetuximab/irinotecan combo out of hospital since May. I was a little nervous. And I was still quite weak. I'd been building up my activity during the week and reached a peak of walking for 30mins on Wednesday.

My appointment was at 2pm. At least we wouldn't have any trouble getting there on time. In fact, we got there early as I could not find any emla cream anywhere.

We walked in. Slowly. I got my emla cream and then we went and got lunch. It was rather in the spirit of things.

This was Dave's meal, not mine (OK I did eat a few)

My port was a little sluggish again. But not too bad. I wore my Jack White T Shirt that I bought when we saw him in Melbourne in 2012. It was a great show and he was supported by Lanie Lane who is also awesome live. No photos were allowed during the show though! I remember being really disapointed about that at the time. And it's another T-shirt without dates on! It is a nice looking T-shirt though.

I had to have another one of those injections into my stomach. I double checked - I really had to have it. Nope I couldn't have it through my port instead. Something about the speed at which it has to diffuse. Or something. Oh well.

One thing about a late start, is a late finish too. We got there at 2pm. The ward is supposed to close at 5pm. I doubt it ever does. Here is my machine, you can just about see counting down 26 minutes to go, before they can start the end processes, and you can just about see the clock in the background, saying 4.52pm.

There was no chance of me trying to walk home after treatment. The first time after treatment I have not been able to walk home. 

Radiation Vibes

Monday was another big day, the morning was full of meetings with Doctors, and finally in the afternoon I got my fluid drained.

For this, I insisted on as much sedation as they were prepared to give me. What they did give me, in my opinion, wasn't quite enough. 

Its a simple little procedure, one of the doctors who'd been looking after me since I was admitted performed it, in my room, with Dave at my side. I was a little bit too aware of what was going on. I didn't enjoy it.

The hope was the drain would be out again before the end of the day. It wasn't.

At least it should be out tomorrow before I have my first radiation session. Nope.

That's not to say it all went badly. It was fine really. In the face of such minor procedures it can be hard to get medical people to understand just how badly I handle it all.

I do have some photos but they are totally gross so I'm not putting them up.

The drain stayed in overnight and by the time it came out the next day four litres of fluid had been removed. That's quite a lot in a little person like me. I felt much better for it.

So even for the removal of the drain, which is a much easier procedure, I insisted on all the sedation I could get. Again, I feel it fell a little bit short, but it was easier in general.

This was not before I had my first Radiation treatment though. Me and my bag went down to the ground floor to the Holman Clinic.

It's quite an amazing room where it's done. 

This is the ceiling.

This is the machine.

And they play music! The team are lovely, and most of the appointment is spent by them making sure you and the machine are lined up perfectly, then they leave the room, and you are zapped for only a minute it seems, and that's it.

As I'm writing this I've had all of my 5 planned radiation treatments. Here is the songs I got during my treatment. My radiation playlist.

Day 1: Queen - Killer Queen

Day 2: A lovely Classical piece I can't find the name of

Day 3: The Beatles - Penny Lane

Day 4: Johnny Cash - One Piece at a Time

Day 5: Stealers Wheel - Stuck in the Middle With You

So I was pretty happy with this. So far the side effects have been mild but I might still flare up with a stronger sunburn like sensation. 

On Wednesday I went home. It was a big relief, but also a little bit scary. This is one of the first photos I took, on the way back to the car.

Weekend Hospital Highlights

My first weekend back in Tassie and I spent it in the royal. It was not without it's treats though.

A pretty sunrise which my photos do not do justice to at all.

Dave and I got eight visitors! We felt very loved. So many lovely messages too. Thank you everyone :)

Dave doing a lovely job of filling out my meal orders.

On Saturday for some unknown reason that I certainly wasn't going to question I was told that they did not need to take any blood. Great.

On Sunday however they had to take my blood twice as the first batches labels got lost. I didn't mind for two reasons: 

1. Luckily as my port was all hooked up they could just take it through my port - so no needles.

2. They had me on plenty of morphine and methadone. I didn't mind much of anything!

One needle that I was still having daily was for clexane. This is to help prevent blood clots while I'm basically lying around all day every day. This has to go into my stomach, bottom or thigh. It always stings. As my stomach was enormous and bloated from all the fluid build up, it made the injection even more uncomfortable. 

On Saturday I refused to have it. 

On Sunday, one of the many doctors I was in consultation with agreed it was OK for me to refuse it, particularly if I could do a little bit exercise instead. Well that as you probably know is a bit like inviting a child to a chocolate shop. I started going for walks down the stairs, and then back up the stairs. Not all the way back up to the 9th floor, but about half way. Very slowly. Always with the company of Dave or Mum. Often just as soon as they'd arrived. Via the stairs. I'm cruel like that.

I had an X-Ray. This was to have a closer look at my abdomen and hopefully clear up the 'to drain or not to drain' debate that had been raging since I was admitted. I certainly wasn't going to push a procedure that involved puncturing me if it wasn't completely necessary. However I was in considerable discomfort. The doctors felt it was a very borderline case. It was getting less borderline all the time though. 

Back in the chair for the X-Ray. I finally have my Band T-shirt on. The Levellers - my most recent gig - just the previous week. I've seen them many many times and they are always brilliant. For this gig I sought out somewhere out of the way to sit, where I would not get knocked in to, as I was feeling quite delicate by then. Another awesome thing about this T-shirt is that when I asked about the conditions and wages of the workers who made them, I was given a decent answer - they had bothered to check and find out that they had indeed been paid a decent wage in safe conditions. 

 It might have been the didge player I was talking to. My goodness they are awesome live.

Round 21 Day 1

Friday was Chemo Day. At least I had no issues arriving on time for this one!

I had cetuximab, which is the one I was having before I went away, and was tolerating quite well, but we needed to ramp it up a bit, so I also had irinotecan. This is one of the chemo drugs I had back in May, just the once, my terrible round 13, that I tolerated so badly that my Oncologist stopped after one round.

So I was quite nervous about this. But at least I was having it in hospital this time, where the effects could be 'micromanaged'.

Part of that management was more injections, so the nurses, aware of my problem with needles, finally convinced me I'd be better off getting a 'butterfly'. And I was. It's a sort of mini cannula that goes in the skin instead of a vein, and as much as I was not looking forward to having it, it was fine, and actually made things much easier afterwards.

Me showing off my 'Butterfly'

I was also very happy to be informed that my port was flowing correctly again, so no further action was needed there. 

I've heard this rumor that people can get bored in hospital. Well, it probably very much depends on why you're in. I hardly got a moment to myself.

I'm not complaining about this at all. I'm very lucky to be getting great medical attention from an awesome team. I really can't say how fantastic all the Doctors and nurses were.    

I began preparation for Radiation treatment on Friday too. They took me down in a wheelchair! I've never been in a wheelchair before. Its quite a different perspective. 

Dave managed to sneak a picture of me being mapped out for radiation. They carefully make a detailed plan of exactly where they intend to 'zap' me. They even give you a tiny dot of a tattoo! So I actually got my first ink today.

We managed to ditch the chair and sneak back to my ward via the stairs. You can see my T-shirt in this picture. I had a band T-shirt all planned for round 21, but of course, I'd planned to be at home that morning. So I didn't have it. This is my Tasmanian Beer Festival 2009 T-shirt. Our first year living in Tasmania, and a great day out.

I got my days a bit mixed up, and forgot to include in yesterdays blog that I had an ultrasound. I'd never had one of those before either (and that would have been my first trip in a wheelchair too). It was quite fascinating. Lovely team too. I couldn't help but reflect that I should be having ultrasounds for very different reasons at this point in my life. This one was to view all the fluid that has built up in my abdomen due to the tumors, and to choose a good point in my stomach to insert a drain.

Bumpy Landing

I hardly know where to start!

I have a lot to blog about. I've decided to break it down into a series of smaller blogs, rather than try and fit it all into one massive one.

So before I start, I'd better just let you all know that I am writing this from home, safe and comfortable.

I didn't blog during my holiday, and apart from a possible brief overview at some point, I don't intend to.

I had an amazing holiday. I enjoyed my chemo side effects clearing, albeit slower than I had hoped (looking back, my expectations were not realistic).

As my chemo side effects cleared however, other symptoms emerged. Mild at first, but gradually stronger.

Shortly before we were due to return to Australia, my symptoms got bad, and I muddled through the rest of my trip on the strongest stuff I could get from the pharmacy.

I had no doubt that it was the cancer. Of course a part of me hoped it was something else. Ever hoped beyond your wildest dreams you're going to be told you have bronchitis and a cracked rib? The thing about hope is, it doesn't have to be in the least bit realistic or likely.

We arrived in Tasmania on Tuesday. It felt good to be back.

I had a CT scan on Wednesday. I had a lot of the elements of a CT and PET mixed up in my mind. The procedure went smoothly, but  I was feeling awful and only got worse as the day went on.

On Thursday at 9am I saw my Oncologist for the results. I was dreading it and also desperate for the treatment I'd need.

So my tumors seemed to have enjoyed the break from treatment. There is spread and/or new growth in my lungs, sternum, abdomen, pelvis and liver.

My Oncologist does not muck about. She admitted me to hospital immediately. This triggered many thoughts and feelings, but given that the main thing I felt was relief, I must have really needed it. 

I was given, among other things, morphine, steroids, anti-nausea and they got some fluid into me too as I had not been able to eat/keep anything down.

Some things I was given orally, some as injections and some via my port. My port, which had not been used for 8 weeks, had become a little 'sticky'. This did not seem to concern my team very much, and given all that was going on, it didn't worry me nearly as much as it might have.

Thursday was very much about getting me comfortable, getting some fluids in me, meeting the various teams that would be looking after me in the next few days.

I spent a good chunk of the day down in 1A, which are consulting rooms, as they did not have a bed free for me in the wards. This was comfortable enough, but they finally got me all the way up to the 9th floor, where I had a large private room. The whole ward was brand new, having only been open 2 weeks.

This is me still down in 1A. I managed to eat one orange and drink the milk. I didn't manage to keep it down though!

So Thursday certainly did not go to plan. I had not even unpacked from my trip and here I was in hospital. However, given the circumstances I think it actually went as well as it could have gone.

Round 20 Day 1

Our appointment at the hospital was for 10.30am and we were only 5 minutes late. Really there is no excuse for not making it to such a late start time, but we did have a lot of other little things to do this morning before setting off.

It's really starting to feel like spring. It was a warm but overcast day, almost humid feeling.

Magnolias are in bloom all over Hobart right now. It looks fabulous. This is one I've enjoyed for many years walking to town. I took this photo in a hurry (we were running late, remember) but I'm really happy with it.

I had the opportunity to mark some progress today. There was a community nurse in the ward today, training in treating cancer patients, so I was asked if I would mind if she inserted into my port today. And I agreed. 

Doesn't sound like a big deal does it?

But even though this lady is a qualified nurse, and just broadening her experience, I would never have agreed to this in the past. I remember for previous treatments, where I've had to fill in consent forms, I've always specified that trainees or visitors can observe but not participate. I'm just too nervous. 

But today I felt ready to give it a try, and it was fine. OK, after it was all done I had a tiny moment of panic, but it all went totally fine and I somehow saved the 'wobble' for a completely illogical moment.

Today I wore one of my Pixies t shirts. I bought this at a gig in Melbourne in 2010. There were 2 designs available. This one, which looks cool and came in green, and another black and white one, which had tour dates on it. And I chose this one. And I kick myself regularly for it. I even tried to find the tour t shirt online afterwards, to no avail. I'd had quite a few drinks before the show, and clearly my judgement was impaired. It was a really great gig though, and the t shirt always reminds of a great day.

Here's a picture I took during the show.

This should be my last round of chemo before we go on holiday. Life has felt a little surreal and rather busy recently. Ever since Dave's guest blog actually. And although it's all good, I think my head is in a strange space at the moment.
I should let myself get excited for our holiday, but I'm scared I'll jinx it, so instead I feel nervous. I need to chill out! Well, I guess I'll do that on holiday.

I'm not sure if I'll do any blogging while I'm away. The plan is that I won't be having any treatment. It'll be really nice to let my side effects clear away and I hope I can build up some fitness. But apart from that, I'm trying not to have too many expectations.

I have scans and treatments booked up for when I get back. If you don't hear from me in the meantime, I'll let you all know how that goes.

Thank you everyone. The support I've felt from you all over the last year or so has been more help than I can say.

Round 19 Day 1 - Surgerversary

I wrote most of this on Friday. So it makes most sense if you read it with that in mind.

Today is the anniversary of my bowel surgery. While I'm not really that concerned with marking off this date, it's etched in my brain, simply because I often find myself filling in forms that require me to list the dates of previous treatments etc, so it's taught me to remember stuff like that. Usually I'm terrible with dates.

Today was also the start of Round 19. We were booked for 10am and we were only 10 minutes late!

Today I wore my Band of Skulls t-shirt, that I bought when we saw them play at the Corner Hotel in Melbourne in July 2012. It was a fantastic gig. The t-shirt is black which these day's I try and avoid if I can (as so many band t-shirts are black) and it has no tour dates. But it does remind me of the night, which was great. It's the only time I've had a chance to see them but I would see them again if possible. They've had new material out since then and it's all been good.

T-shirts are actually a rather poor choice for chemo with a port as I have to stretch the neck out quite far to let the nurses access my port. I'm enjoying the theme though so I'll will stick with it anyway.

I was tired even before I started chemo, and I soon started to feel the effects of the treatment and become fatigued. I did still manage to get to the gym afterwards though, and walk home, although it was far from the most energetic session. I think if it wasn't for the new studies that show that exercise on the day of chemo can improve delivery, I'd probably be telling myself I can give myself the day off on chemo day.

As we started walking home, I became hungry (it was lunch time) and we were debating about where I could grab something to eat. I didn't want to go too far out of our way as I was tired and we were on foot, but I am a little bit picky about where I eat. Then we turned the corner and saw Big Henry's food van! Perfect! I love this new food van thing happening in Hobart.

I'm home now, tired but resting. 

I thought I would do something I don't think I've really done before and give you all a snapshot of the side effects I'm feeling right now. Just because I get asked a lot (which is fine), so I guess some people might be interested.

Change of plan.

I wrote about my side effects. In detail. And it was a LOT of writing. Easily enough for it's own post. And I felt a bit funny about it too. Like I was complaining. Even though I wasn't. And even though no one ever makes me feel like I'm complaining (apart from perhaps me). So I've deleted it again, just leaving you all instead with the info that I do have a bunch of side effects I'm dealing with. I try to avoid thoughts like 'I wish I wasn't getting this' or 'I wish this would stop' because the side effects mean I am getting treated. And they mean I'm still alive. And they're not great but they're certainly not the worst thing in the world.