Round 27 (Not really round 27)

I'm still so far behind with my usual meticulous reporting!

I'm not sure if I will ever catch up or not, but I figure in the mean time I'd better just keep up!

So this Friday was what I consider my 27th Chemo treatment. I've had two in hospital as an in-patient, which I'm yet to blog about.

This was my first one as a day visit then, for a couple of treatments, and I was a little nervous about because of that, but also because it's a change in treatment again. Not a new treatment, but a return to my original regime. 

I feel that it went quite well at the time, but I was in much better health at the time too, so I've been wondering if I will tolerate it so well this time.

Well, so far it's been quite a similar experience. Today is Sunday and I am feeling pretty strong fatigue, but not the worst - here I am blogging after all.

Before chemo, I was booked in for another fluid drain. First I have an ultrasound so they can pick the safest spot to insert the needle. What they want is a nice big pocket of fluid, and I do seem to have favorite spot. 

I find the ultrasounds quite fascinating and a little bit sad - talk about the wrong reasons! However of course I maintain plenty of gratitude for them too.

Next is the drain. This has to be performed by a doctor. I've lost count of how many drains I've had now (I'm sure I could work it out easily enough in 5 mins, but not now). Each one is a slightly different experiance, and this one was very different for a number of reasons.

 All this equipment is laid out ready for my drain!

Firstly, I almost felt this drain might be a little soon. The timing is very delicate. They need a certain amount to make it safe to do so. Left too long and I will get very sick. This is what has been hospitalising me - drains not being done in time. And it can turn very fast from not being needed to being urgent.

However, the team were satisfied that we had a good entry point so we decided to go ahead. If I waited I could well have ended up in A&E at the weekend, and then possibly checked in to hospital again.

The next milestone with this drain is that I declined to take a sedative. This is huge for me. I remember for my second or third drain there was talk of me not having a sedative and I was terrified and did everything in my power to make sure I got some.

But they do rather knock me out for the whole day, and I had a busy day ahead of me, and this is more like my 6th or 7th drain, I'm getting rather used to them.

The doctor did a fantastic job and with plenty of local and with Dave there holding my hand I coped really well.

But here's the other unusual thing about this particular drain.... They couldn't get any fluid out. We tried all the tricks, and there is no denying there was fluid there, but it would not drain out. There are a number of reasons why this would happen, and we can't be sure what exactly it was. So we had to give up.

So I'm sort of stuck for now. It could be worse. I'm bloated and uncomfortable but managing that will pain medication. I never feel hungry but I can still eat. I'm on the waiting list to have another go next week, but I don't feel the need to check into A&E at present. It's been a long time since I've managed to go this long without a drain and that is awesome. It would have been nice to have a bit of relief but I'm coping. I'm still at home and being well looked after.

Because I'd had the attempted drain in the morning, I was booked for a bed instead of a chair for the day, so that is where I got my chemo too. 

This is not a band t-shirt - I'm loosing track of which one's I've worn and I'm running out. This is a pretty significant souvenir t-shirt though. In 2008, on Dave and I's first wedding anniversary, me and my rowing crew won a race! This was on Tresco in a Cornish Pilot Gig, in the Stern First Race. Bit of a novelty race, sponsored by (delicious) Cornish brewery Doom Bar. Hence t-shirts for the winners - that's not usually a thing. The race ended on island of Bryher with live music and general pub festivities. It was an absolutely cracking night all round.

So this chemo see's a return to the Bottle, which I've just had removed. It see's a return to some old side effects too, including the reaction to cold. I'd forgotten a number of my old tricks to manage this but I'm quickly getting back into them. It's a little different managing it in summer to winter, but I've got this.

On the way home Dave wheeled me back to the car. I've been using the wheelchair since I checked out of hospital before New Year and I must say it's been incredibly useful, and definitely due it's own blog page soon.

Catching Up

I have a lot of catching up to do. Today is Sunday. I got out of hospital on Friday. I was there for nearly two weeks.

It's going to take a few blogs to get all my usual detail in, so today's blog will be a bit different.

I will start by explaining what put me in the Royal. It's called ascites. Fluid builds up in my abdomen because of the tumors. It needs draining regularly. It can change very suddenly from something that is uncomfortable to something that is intolerable and makes me unable to keep any food down, and from there it doesn't take long for my condition to slide quite fast.

So here is where I'm going to take this blog in a bit of a different direction to my usual style, and start with me trying to relay to you all a wonderful analogy I read once about grief. This is only my poor interpretation so I hope I can do it justice.

It was an article that described grief like finding yourself clinging to your shipwreck, that which you've lost, with massive waves crashing down upon you and almost drowning you. That is the grief, and the waves are so powerful and terrible that you think you will die. But you don't. Even though they keep coming, you hold on and survive somehow. Gradually the waves slow down. Gradually they become smaller. There will always be waves. Sometimes you will see them coming, sometimes you won't. Some will be small and some will still be massive. But you survive them all. They become part of your life.

I just loved this analogy so much. I found it so beautiful. But for me it was very easy to twist into an analogy about what it has been like to loose so much condition so fast.

At first when I was sick I was hit by a massive wave, yes it knocked me under the water but I recovered well and was nicely afloat again before the next wave hit. Well the waves keep coming, but in the case of my health, they keep coming harder and faster, each time I get knocked down it's a little harder, and each time it takes me a little longer to recover, and then suddenly you're not getting any time to recover at all before you're in danger again. Its frightening. You wonder how long it can go on, how much you can take, how serious are things going to get.

The last couple of weeks have been confronting and frightening. I've had the best possible care, but no assurances. 

I've felt gratitude every day, and it's a powerful magic. It fills my heart in a way I can't explain or put into words. I'm very good at feeling gratitude, but very inadequate at expressing it. Any one of you who has so much as sent a good thought my way has contributed to it, but I don't think I can ever let you really know what it means to me. 

Moving forward, as much I definitely needed to be there at the time, and I'm very grateful I was able to be, I really want to stay out of hospital as much as possible. I'm taking things very easy while I recover gently at home, and being very well cared for of course. I feel like myself and my medical team may have been caught a little off guard by this sudden 'storm', but hopefully with some more careful management we can keep me out of hospital.

I'm booked for another fluid drain on Wednesday and Chemo on Friday. The sicker you get, the harder it becomes to do the right things to stay well. Eat well, exercise, even take medication. It's another challenge, but I'm up to it.

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. 

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. 

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).

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.