Wednesday 30 November 2016

New Normal - Treatment 25

For a little while in my mind now, I've been trying to adjust to a new normal. A normal where I get out of hospital and can't go for long bush walks. A normal where I need an afternoon nap every day. Where I can't do more than one thing in a day. I take a huge amount of medicine to manage symptoms and side effects. I can't do many things for myself. I can't drive. I get three or four 'good days' in a fortnight. A good day still means no more than being able to walk for 30 mins, and still needing that nap. 

I have been on Chemo for over a year now. Fourteen months. So it's no wonder there is a certain 'normality' to it now. I've had a couple of small breaks in that time. The last one, the longest I've had, did not do my health much good. 

But I was talking about it over lunch with a friend on Thursday and she encouraged me to fight again. And I'm glad. Its not a normal I want. And I went home and had a really good walk - a 30 min walk which included a steep hill. A walk I haven't done since before my holiday. And I booked into the gym for Friday.

So today I walked to town. This has been a staple of my chemo routine. Yes it's part of the new normal but it's a positive part. Then I went to the gym. I haven't been to the gym for three months. That is a long break. I was a bit nervous, but I went through a super light version of all my exercises and it felt great to have done it. Getting back to better things. Normal things. Real normal. Pre-cancer normal. OK, so it's Pinc Pilates I do now, but at least it's still going to the gym. And it's always good to see my colleagues too.
Warming up on the bike

Then Dave and I grabbed a quick take-away from Heartfood before rushing to the hospital for chemo. It was so busy in the ward when we arrived. It took a little while for us to get settled in and I was worried about what time we'd be leaving - late!

Today I wore my Bad Manners T-shirt from a very recent show they did at the Rebublic Bar for their 40th Anniversary tour. It was a real treat to see the legendary Buster Bloodvessel in action. 
I got a surprise half way through my treatment. A treat, you could say. A doctor came and told me that they are not giving me any Irinotecan today as the side effects were so strong last time. And I complained! I want my treatment! I've said it before - as much as chemo is not a great thing to be facing - I'm very lucky to have it not only as an option (rather than being told that nothing can be done for me) but it is available to me. Not everyone who gets cancer gets the same opportunities as me. But I can have it again next time. I need to stay well during this process too. Once I have got my head around this I will be more grateful for the rest. Which I will make as un-restful as I can manage of course! I can look forward to feeling well for more days this fortnight and possibly getting more exercise and fresh air.

The air was pretty fresh today! I didn't manage a walk home but as we left hospital much sooner than expected and feeling much brighter than expected we did have a little walk around town. My fitbit tells me I've done over 10,000 steps today. I'm pretty pleased with that.
I took this photo in Liverpool street. I like the two different cloud colours.

I started driving again this week too, for the first time in about two months. Just a short distances to start. I've had the medical 'OK' for a while now. It was totally fine, and felt good to be doing it. I'd never dream of driving if I didn't feel 100% up to it. As much as it was great to drive though, it's better to walk. 

Friday 11 November 2016

Treatment 24

Last week, technically, I did not receive chemo. Cetuximab may be delivered in hospital, on the oncology ward, and the nurses may 'suit up' to administer medicine through my port, and it will upset my cancer cells and give me some fun side effects in the process. But as I think I've mentioned before, chemotherapy is a word that only applies to 'cytotoxic' drugs. Not all drugs delivered in the same style are cytotoxic, so not chemo.

My appointment was booked for 2pm. If I'd arrived at 2pm I would have still been in hospital at 7pm. Luckily someone noticed this and asked me to come in 'before 12pm' today instead. Of course, I said. No problem.
We got there at about 11.59pm.
So very early by my usual standards.

Another lovely spring day. More awesome street art. 
The date was 11th Nov. Remembrance day. Always a day touched with sadness. But we still find joy in each day too, as I would hope the fallen would want. Today while listening to the radio we also learnt that musical poet legend Lenard Coen has died. More sadness, but more celebration too. 

Irinoteken means an injection. It means we were there until just after 5pm.
I wore my Laneway Sydney 2016 T shirt. I've actually worn it to chemo before but I was featuring the skirt I was wearing at the time, not the T-shirt. Laneway in Sydney is great, we've been a few times, and make a little holiday out of it.

When I have chemo (by which I mean, treatment) I also get given antihistamine to help against reactions, anti-nausea to help against nausea and steroids to help with fatigue but also other side effects. And when I have treatment in the afternoon instead of the morning I'm then up for a good chunk of the night thanks to the steroids. Tired but totally unable to sleep. I have many good strategies (and drugs) in place for difficulty sleeping, which of course hits me from time to time for various reasons, but on a late treatment day nothing seems to cut it. So I've been going with it. It's gone 1am and I have sent an number of long emails. Facebook is quite dull at this time of night. I still make more comments and longer ones. And then I generally don't get back to my computer for a number of days as I recover from treatment and fatigue. It's OK though. Perhaps even an opportunity to get some bits done. Not that I fully trust myself or what I write during these strange steroid buzzes. 

Friday 4 November 2016

Round 23? Round 22.5?

So just a week after my last treatment, which I incorrectly refer to as round 22, I find myself back in hospital for another dose of cetauximab.

It turns out that last week I received just a weekly dose. So of course, a week on, I need another dose. And of course, next week too.

But next week I am going to have a fortnightly dose and stick to that in future. And I'm very glad. 'Chemo day' takes a lot out of Dave and I, so I'm very grateful we don't have to do it every week, as some people do.

We walked in, a lovely breezy warm spring day. We had to walk a little quicker than I would have liked as, guess what, we'd left a little later than we'd hoped, despite the late appointment time of 2pm.

We walked a slightly different route it, which took us through a rather awesome underpass. Dave is carrying my bag for me. He always does that for me now.
We arrived for my treatment on time again, and my port behaved well. As I was just having cetauximab this week I didn't have to have an injection or stay quite as long. I wore my Specials T-shirt. It's a great T shirt, it looks cool, it has the tour dates on the back, and it was a spectacular gig.
Once again, we did not walk home. We did go to a gig that evening though. Olympia. It was great. But it turns out I can't stand up for the duration of a gig at the moment. I was lucky and got somewhere to sit this time, but I'm a bit nervous about what might happen at future gigs. I was tired, but thanks to the steroids I get given on chemo day I was able to enjoy the whole night (sitting down).