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.

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.

Round 18 Day 1 - About that Surrogacy thing

OK, so the title of this post is Round 18 Day 1, but I'm writing it on day 7, and I'm going to include some events from Round 17 Day 13 too.

It's been a strange week.

On Thursday, we had one of our regular reviews with the oncology nurses. I was all set to organise a final scan for before we go on our trip to the UK. They had a bit of a surprise for me though: No scan! 

... No scan? ... ... ...Really?

What is funny is that they totally anticipated my reaction perfectly. I suppose they have been dealing with me for a year now and it goes to show that they are getting to know me quite well. They had to fight to convince me that this was OK. They were very firm that I just need to focus on enjoying my break and not worrying. Easily said of course! 

I am of course entitled to put my foot down and insist on a scan, but why would I have more scans then I need? They are a wonderful resource, and I'm incredibly grateful to have access to them, but I certainly don't do them for fun! I will have a scan soon after returning regardless.

I'm still getting my head around this, and in a way, I'm still deciding if I will have a scan or not.

On Friday in usual style we arrived for our 9am appointment at 10.15am.

Treatment was uneventful. I wore my Let England Shake T-shirt I got when I saw PJ Harvey perform this album at MOFO 2012. Its not a tour T-shirt, it doesn't even have PJ's name on it - just the album title. However this is a really special album for me. Its nothing to with that cancer thing though, so although I can't resist writing about it, I've done it separately, so's not to clog my cancer blog with my random waffle. If you'd like to, you can read about my experience with Let England Shake here.

After treatment I went to the gym to do my usual Friday workout. I'm very lucky that although I can't make the allotted Pinc time on a chemo day, I can sneak in during lunch and do my program anyway.

Here I am working out!

We walked home a slightly longer scenic route and only got a little bit snowed on. We did see a galah though!

That night Dave published his guest blog. We were both very nervous about sharing this and pretty much hit 'post' then hid from social media for the rest of the night. Dave made some amazing macaroons to help us keep our mind off things (not usually part of my low GI diet, but I'm still being a little relaxed about this to try and gain more weight).

They were delicious!

We really have been overwhelmed by the wonderful love and support that keeps on pouring in response to that post. It really means more to us than I can put into words. I don't know how to even begin to show all the gratitude I have for all the amazing people in our lives. It actually scares me a little, all I seem to do these days is receive, and give little or nothing back, and I don't know if or when I'll ever be able to change that. When feelings like that overwhelm me, I try to remind myself that it is much better to be out of my comfort zone because of something like that than for most of the things that have taken me out of my comfort zone in the last year. It's that train of thought that means when I was contacted by local radio earlier today and asked if I'll do a live interview about our GoFundMe page, I agreed to it without hesitation (and afterwards, think - 'eek what am I doing!')

Oh yeah, our GoFundMe page! So, partly inspired by the beautiful response we got from Dave's blog (and partly inspired by financial needs) we decided to take ourselves out of our comfort zone and into the 'public eye' yet again. Once more, we hit 'post' and then ran and hid from social media. And once again, we've been blown away by everyone's reactions.

Thanks everyone, we're really feeling the love right now.

If you'd like to get updates about by blog via facebook, follow this link.

If you'd like to check out our GoFundMe page, follow this link.

Check out 10yo Gus and his Swim for Bowel Cancer here

Check out Andy's Beard Shave for GI Cancer here

About Let England Shake

I'm being very self indulgent here. This blog is for keeping my loved ones up to date with my progress, raising awareness, helping me process, and perhaps even helping others going through their own experiences.

This has nothing to do with my cancer experience, apart from the fact I wore my Let England Shake T Shirt to chemo last week.

It's a very special album to me, and now I'm getting used to this blogging malarkey I'd like to write about some of my experiences with it. Even if no one wants to read it! I recommend skipping this one!

Back in 2011 I was excited to learn that PJ Harvey was releasing new material. I kept a listen out for singles played on triple J. One of the songs they played a lot was 'Written of the Forehead'. It has a really surreal and dreamy quality which seemed lead to me not noticing it was playing on the radio, I'd suddenly realise it was playing and I'd not been paying attention, and then it'd be over and I'd feel like I hadn't had a proper listen.

So, without knowing much about how it sounded, Dave and I got the album when it was released. Then we didn't listen to it. We kept meaning to get around to playing it and 'giving it a good listen', and yet it kept not happening. If I remember rightly, 2011 was a fantastic year for music, we were probably distracted by all the other songs out there at the time.

Then in April 2011, on the other side of the world, my Grandpa died. My boss sent me home from work. I went to home to bed and cried and cried. Then I played Let England Shake. On repeat. All day. And for the following two days. It's an absolute masterpiece. It became the soundtrack of my grief, but it was also so much more. It connected me to him not only by being there during that time, but because it was recorded very close to where my Grandpa lived, and it is all about war, which is something that had a profound effect on my Grandpa (like most of our grandparents) and he would often talk about his experiences in a way that really brought it them to life.

In July 2011 I traveled back to the UK, not for a holiday, but to support my mum while she underwent the rather major surgery that is kidney donation (as the donor, not recipient). I remember being so scared on the day of surgery, and doing everything I could not to show it. It's a long process, and in my mums case it happened to take a couple of hours longer than expected, however it all went well, and finally after a long day of waiting around at the hospital, we were told she was coming around and we could go and see her. My sister and I rushed to her side, she was only just waking up and still rather groggy. It turns out she is one of the unlucky people who are made nauseous by certain painkilling drugs, and quickly started to feel very unwell. While my sister stayed by her side, I rushed out of the ward to find a nurse to help, knowing there was a nurse station just outside in the corridor. 

I think I remember saying that my mum needed some help. Then I remember blackness. And feeling wonderful - so peaceful and calm and comfortable. And Written on the Forehead. It felt like a minute, but one of those minutes where you savor every second. And all the while in the soft blackness Written on the Forehead by PJ Harvey clearly playing.

Then I remember becoming aware that I was laying on the floor of the hospital corridor, with someone urgently asking me if I was OK. Then more commotion, more people, someone asking me if I'd eaten anything that day. They sat me up against the wall, took my blood pressure and checked my oxygen levels. Someone tried to check my blood sugar - which involves them pricking my finger - so I firmly refused to let them do that! I finally managed to convince everyone that I was OK, and ascertain that someone was looking after my mother. Once I'd sat for a bit they let me get back up and go back to 'helping' my mum. Ha ha big help!

I look back at this as a funny story, but also insightful. It told me that the sound of my unconscious is Let England Shake. Once you take everything else away, there is still music playing in my head. And it's Written on the Forehead.

I don't listen to Let England Shake all that often these days. At least, not on repeat all day. It always makes me cry. It makes me angry. It's so beautiful. And it's always there in the background anyway.

Here's a picture I took during her performance at MOFO 2012. 

It was an amazing show.

A Different Side Of Life

Hello gentle viewers. Dave here as guest blogger.  Fliss usually writes about her experiences as they happen, but I’m going back in time a bit to begin a story that has been linked to the cancer journey, and running alongside it unbeknown to our family and friends. The story about having babies.

                I’ve always liked the idea of having children, but up until fairly recently I’ve always liked the idea of not having children slightly more, and that was largely due to the transient lifestyle we found ourselves in, which was partly through choice, partly due to the complexities of obtaining our Australian residency. Even after arriving in Tasmania we had managed to move house five times in as many years.  However, we had finally begun to feel settled and everything was going well.

 At the Grampians 2014

                Every year Fliss & I like to do something special on our anniversary, 25^th August. In 2014 we went to stay in the Grampians in Victoria, one of our favourite places in Australia, and that’s where we began to give starting a family some serious thought. I was ready, so to show I was committed to the cause I gave up one of my favourite pastimes, smoking! Fliss still needed to think about it for a while, and so it became a frequent topic of discussion over the coming months. Then in May last year, a card arrived in the post for me. The decision had been made!

                So for a few short weeks we were full of happy anticipation at the new adventure we were starting in our lives. Some women experience slight cramping or stabbing pains in the abdomen at the early stages of pregnancy, as the tiny embryo attaches to the lining of the uterus. When Fliss experienced similar feelings it only heightened our excitement, tragically not realising they were heralding the arrival of much less welcome news.

                Fliss left hospital after the surgery on 11^th August with only a few weeks to recover before having to go back into day surgery to have an infusion port put into her chest, with chemotherapy commencing shortly after. There are many different types of chemotherapy, most have at least a couple of undesirable side effects but the ones that immediately concerned us were that it can cause infertility and/or bring on early menopause. We didn’t have much time so decided that Fliss’ body would have to endure a bit more discomfort before chemo started, and so begun IVF treatment.

                The preparation for extracting eggs to preserve, along with more appointments, prodding & poking, involves lots more injections. Not great for someone with a needle phobia. So at this point, including the blood thinner I was already giving Fliss after the operation, I was having to inject her four times a day!

Dr Dave will see you now!

                It now seems that Fliss’ chances of carrying our child are pretty slim. Which means that now we are faced with the difficult task of finding a surrogate. The baby would be 100% ours genetically, unlike some cases where couples need an egg or sperm donor. In other words, we have the bun but need an oven! On the morning of our anniversary last year, we received a call while we were still in bed telling us that we now had four fertilised embryos ready to go!

The journey continues……..

Holiday time

One year ago today, I was feeling pretty unwell and sorry for myself. So I decided to cheer myself up by posting on Facebook that our trip back the UK was booked. 

It did cheer me up. As I'd hoped, friends and family responded positively and it made me excited to be going back and catching up with everyone. After all, a trip back was rather overdue.

However the excitement was short-lived. Instead of going on holiday we had to stay in Hobart for me to receive surgery and chemo. Don't get me wrong, I know I'm incredibly lucky to have had those treatments, and perhaps if I'd gone undiagnosed and gone on holiday instead I wouldn't be here now.

But wow, I really wanted to go holiday. I remember asking my surgeon and oncologist more than once if  I could still go anyway.

Well, we're trying again. I'm pretty excited. And very nervous.

I'm having a scan just before we leave. I think that unless the results indicate that immediate surgery is required, I should be good to go. Did I mention that I'm really nervous?!

Part of me thinks I'm inviting a jinx by sharing it like this, on the anniversary of my previous share, but another part of me knows that is silly. So I'm hoping by confronting that superstition I can break it.

There is a lot to consider when travelling overseas. Add illness into the mix and it becomes even more complicated. I have a lot to discuss with my medical team over the next few weeks. I'm hoping I will be able to have a complete break from chemo, but even if that is the case I will still have to take good care of myself. 

We leave Tassie on the 24th August, and arrive in the UK on the 25th (our anniversary). We leave the UK on the 3rd of October, and plan to spend another week in Victoria before returning to Tas on the 11th.

We'll be travelling around the country a bit, catching up with people. We still have lots of planning to do.

This photo is from our trip to the UK in 2010. Hopefully I will have some new photos to share later this year!

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Round 17 Day 7 - Happy Cancerversary?

Today is one year to the day since I first got my worrying symptoms. The symptoms that lead to the investigations that lead to my diagnosis.

It's not the day I found out I had cancer. Its definitely not the day I got cancer - that day will never be known. It's not a day that cancer entered my thoughts.

It's the day that something changed though. Things had been changing already of course, in my body. But I'd been unaware.

On Tuesday the 14th July 2015 things started changing in my life. And it just kept going. I thought it would be a minor blip and I'd get right back on track. It wasn't.

It just kept escalating. And now it's been a year. I've cancelled plans, I've stepped back at work, I've had surgery. I'm still having chemo. I've had to make so many sacrifices and compromises.

I spent a long time thinking at some point things would 'go back to normal'. It was hard to accept that this is my new normal. In many ways I'm still adjusting.

And now what? In just under a week will be a year to the day I got my diagnosis of cancer. The week after it'll be the CT scan. Next month will see the anniversary of my bowel surgery. Am I going to keep ticking off these new, and not particularity happy anniversaries? 

Well yes, I probably will.

But I will also be keeping these important factors in mind:

I'm still here. 

I can't even attempt to explain what that means to me.

Life is still happening.

It's not just my 'cancerversary' today. Its my brother-in-laws Birthday (Happy Birthday mate!). Its a stunning, crazy day in Hobart with snow and horrible strong winds and sun and rain and rainbows. Its summer in the UK. There's an infinite amount of terrible and wonderful things happening right now.

So here's to many many more years. I'm tempted to not venture outside today as the weather is so wild, but I will enjoy today anyway. I have a ridiculously huge amount of things to be grateful for.

The view through my window today. That's right, I didn't even step outside for the photo!

Here is a link to my blog post about that day last year.

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