Thursday, 26 May 2016

Round 13 Day 14

Earlier in the week I sent an email to my oncologist reporting all the side effects I was experiencing from my new regime.

This lead to a sort of 'upgrade' to my appointment on Thursday. Instead of a basic check up with a nurse, my appointment was rescheduled and I was met by two nurses and my oncologist.

They said for me to complain it must be bad. I was a little surprised by this as I thought I've always been a fairly diligent reporter of symptoms. I suppose there were quite a few more than usual.

And come to think of it, I was more scared of 'the next round' then I've ever been, apart from perhaps the first one. 

And also, I've always managed to go into each round almost fully recovered from the last one, whereas I was ranking myself as 75% recovered at best, and now looking back, that seems generous. 

So perhaps some of that was coming through in my email too.

I had a bad time with round 13. I was relieved when my oncologist re-arranged my treatment plan.

We took out one of the drugs giving me the worst side effects, plus my bottled stuff. She's assured me this will not reduce the effectiveness of my treatment, which is very important to me - I was also assuring her that I would happily keep going with it if its the best way to tackle things. 

But I was really was very relived to not be facing another hit of 'the lot'. 

Thursday was a hectic day, and I'd had a terrible nights sleep the night before. I remember feeling rushed off my feet. That is partially due to the fact everything seems to take me so long these days. And I need more sleep than average. I remember fleetingly thinking back to past 'pre-chemo-Thursdays' They were similar, but not exactly the same. It's always a busy day, but I used to be feeling better. I was still very fatigued, and my appetite was still not back properly.
Still, I felt positive regarding the outcome of our meeting with my oncologist, and I did have several treats on Thursday too, including lunch with a colleague, walking the dogs, and this spectacular sunset.  

Wednesday, 25 May 2016

Round 13 Day 13

It's a bit scary. The condition I'm in now compared to this point in previous fortnightly treatments. I should feel 'normal' by now. But I don't. It's making me wonder what future weeks will be like. I might not be able to do anything. 

Today I managed to do things. I got up in the morning. We took the dogs for a walk on the beach. Which was wonderful. It felt like it's been too long since I walked on a beach. It wasn't a warm day but I still just had to take my shoes and socks off and walk on the beach barefoot, get some sand and sea between my toes.

It made my feet sore, due to my new super sensitive skin thanks to chemo, but it was still well worth it.
Later I had my usual pre-chemo blood test. Shortly after we set off I realised I'd left my referral at home (this is not the first time I've done something like this!) so I had to call the hospital and get them to fax a copy over.
I learnt that the people who do blood tests are called Phlebotomists. I'm getting to recognise quite a few of the people who work there. Got seen by one of the total ninjas again.

Then off to work. Despite feeling less than fine, and starting to really dread the next round in a way I hadn't really experienced before, I was managing to maintain a really upbeat mood. I don't know why. I could have skipped to work. I felt so happy. I had a good song stuck in my head. I had a great shift at work, and afterwards David and I met a friend for dinner. We had a lovely time and I ate everything, which is really good, as eating has not been easy for me and I've lost a little weight.

Saturday, 21 May 2016

Round 13 Day 9

Yesterday I did things. That's a novelty at the moment.

I wouldn't have done them without lots of help and encouragement from Dave. I would have just stayed in bed. And regretted it.

But instead I attended Yoga at 9.45am which is basically the middle of the night for me now. Showing up and participating are not the same thing. I ended up doing a guided meditation instead of usual yoga stuff - but it was really lovely.

Then I went to the gym. As I walked slowly from the yoga studio to the gym I noticed that my legs felt fine. They could have belonged to a different person. Or the old me. Actually the old me was plagued by joint pain so yesterday they felt fabulous - pain free and just normal. So I tried to focus on that.

At the gym I did half my program in twice the time. But I was there. Which was great.

Next I attended my support group meeting. That's a Cancer Council thing - not sure if I've mentioned it before. But it's really good.

Then home for a rest. And then out again! Round friends for dinner, which was really good.

I did all this safe in the knowledge that I had nothing on today, so could rest as much as I needed. 

When I woke up this morning at 10.30am, I felt fine. Normal. And that feels amazing. I basked in that for a little while, thinking I would get up soon and do things today too. Until my stomach started churning again. But I still got up and made myself breakfast. Then I couldn't eat it. 

Still, I was determined to press on. It was a nice day outside - perhaps I would have a walk later. I had my shower. After that, I interpreted my latest stomach churnings to be hunger. So I started to peel an orange. Then it all became too much effort so I went back to bed. Until 3pm.

Dave finished preparing the orange for me then. It tasted so sour I couldn't eat it. It wasn't that sour - it's just my tastebuds being messed up. 

I had lunch at 4.30pm. Half a bread roll. I had dinner at 7pm. Some broccoli and lettuce. The eating doesn't worry me yet. As long as I get my appetite back at some point I will make up for it then.

It's 11pm now, way past my bed time, but I wrote most of this much earlier so I wanted to get it done. Otherwise it won't. So many things in my life don't get done these days. I don't like it. It felt so good yesterday, ticking off things in my diary instead of crossing them out. Well I have things I'd like to do tomorrow too so time for bed.
This photo is from last Thursday, and totally irrelevant - but you know how I like to include at least one picture.

Friday, 13 May 2016

Round 13 Day 1 - Not Cancelled, re-scheduled

During what I now consider my 2nd chemo regime, which I will look back fondly on, I was able to do wacky things like pop into hospital for a dose of chemo, then nip round the corner to the gym for a 30 min workout. And then sleep for 12 hours.

It's hard to explain how the change of pace feels. I've done this dance already. Here we go again. Was I expecting to have to do it again so soon? Well, yes I kind of was actually. Expectations and hopes are not the same thing.

I was hoping to hear that I was all better and can just resume life as we knew it. Obviously. 

I was already booked for chemo on Friday when I saw my Oncologist on Thursday. I was also booked for yoga, gym and dinner.

Some re-scheduling was required. 

So on Friday morning Dave and I walked into town together. I did my gym workout. Then I went to yoga. Then we went to the hospital.

I'd declared that morning that I wanted to wear something fabulous. And I did.
This is 'The 80's Skirt'. It got a little bit of attention during the day and at the hospital, which was fun. I even started thinking perhaps I should organise a fancy dress for one chemo day. I was having a laugh with the lovely nurses. I did my Home Exercise Program while receiving chemo.

About 2 hours in, it hit me, hard. Suddenly I was weak and tired and feeling lots of other odd things like a numb face.

With all the rushing around this morning it was a finely tuned mission to get my emla cream on at the right time, but this was achieved with overkill on my part.

I'm no longer required to do a urine test before treatment. I do have to have an injection in my stomach though. This is to help with what sounded like some pretty dire gastro that can result from this treatment. 
After I'd been to the loo twice they gave me another injection. I've been a proper pin cushion this week. I know it could be worse, but it was quite a lot for what I'm used to.

It took us an hour to walk home. But we did it. And we went out for dinner. My friend ordered a burger called 'The Hangover'. The waitress tried to serve it to me - I must of looked pretty dicey.

I've got lots of anti nausea tablets. They come in terrible non-recyclable packaging that is hard to open even when you're not also trying to concentrate on not vomiting.

I was sick that night. And sleep is weird. Fatigue. And steroids. And nausea. And I had my bottle back. My horrible wonderful bottle.

I feel this is a bit of a disjointed post. But I suppose that reflects things fairly well then.

Thursday, 12 May 2016

Round 12 Day 21 - Results Day

I wanted to blog on Wednesday. And Thursday, and Friday. But this week has been a bit of a whirlwind. I have either lacked the time or energy or both!

I started this blog planning to update with all my adventures since Tues on this one post, but it's too much. I'll do them separately, and some of the smaller posts I'll just let you seek out yourself if you want, rather than spamming my facebook page with 3-4 posts at once.

So my CT Scan Results (and routine blood test results) was on Thursday this week.

The good news: Lymph nodes are all looking rather tumor free! Blood showing another decrease in tumor count too which is nice.

The not so good news: The tumors in my lungs have increased in size and number. They are my Oncologists biggest concern right now. There is also a very small spot on my liver and my sternum.

So time for a change in regime. I was booked for chemo on Friday anyway, but we changed it from the gentler Avastin/Capecitabine/every 3 weeks routine to a fortnightly dose of stronger stuff. Some new, some I've had before.

This treatment is called FOLFIRI (Modified). Catchy right? I'm sure people spend millions coming up with the drugs. I hope they didn't spend too much coming up with the name. 

I'm learning so much all the time. One of the main new things I'm on now is called Cetuximab. Which isn't actually chemo. Chemo is stuff that is cytotoxic- that means it kills cells. This stuff changes the way cells grow so for cancer cells its supposed to 'switch off' the bit of cancer cells that make them keep growing unchecked. Or something. I think. I googled it and it scared me!

I'm also going to be on the bottle again - going home with the stuff attached on Friday and having it removed on Sunday. 

On previous results days, Dave and I have avoided as much human contact as possible. I still can't properly explain the roller coaster that is results day, but one of the things that it is is exhausting. 
However this time, instead of having no other plans for the day, we had several social engagements we wanted to attend. And we did. And it was OK. It was great. But also hard. So I guess that averages out as OK. It's good to know we can do it when we really want to.
Before we started socialising we had a little time for a wander around the botanical gardens which were looking spectacular with Autumn colour, and we saw some Yellow Tails, which always brings me joy.

Wednesday, 11 May 2016

Round 12 Day 20 - Blood Tests

Today I had to get my usual, pre-chemo blood test. As I'd had a cannlua in my left arm for the CT scan the day before, I asked the blood-test-person if they could do it from my right arm.

Well she had a go. She got the needle in. She even got some blood out. I wasn't watching of course. So I can't give you any more detail than that. 

Other than that it didn't work.

So then she had to just start again on the left arm. Where I had the cannlua the day before.

I've come a long way on the needle front. But the fact that I still feel the need to share every little needle incident that comes my way just goes to show that some things don't change too easily.

I feel like some sort of evil secret shopper - needlers of Hobart beware - I'll tell everyone about you! 

But it's not you - it's me.

So I'd like to say that the blood-test-person did a fine job really. I guess my veins were just not being cooperative that day.

I got two little bruises and two little round plasters in the crook of my elbows. 

Tuesday, 10 May 2016

Round 12 Day 19 - CT Scan no. 2

I had my second CT Scan today.

My first CT was in July last year - to get an image of the tumor in my colon and find out if there was any spread. 

I didn't blog about it until September or so, so I was relying on my memory at a time when lots of new things were happening including chemo brain. Reading back I think I was slightly mixed up with CT's and PET's. Only slightly though.

I booked this CT weeks ago - so I got to pick a good time. 11am is perfect. You have to fast for 2 hours beforehand, so I was able to have breakfast first without having to get up too early.

Upon arrival I was given two cups of green liquid to drink. Then we wait. The waiting room at Radiology Tas is pretty nice actually. Comfy seats, warm (it's been a really cold day!) and some really nice art on the walls.
Why is it green? It didn't taste very good. I couldn't decide if they've added a bit of cordial to try and improve the flavor or if that is just how it tastes. And it came in disposable plastic cups. I took them home so at least they'd be recycled. I wonder if they'd let me bring my own cup next time.

After you're called through you go change into a disposable gown, have yet another cup of green liquid and then get on the bed thing while they put a cannula in. 

And here's a bit that I'd forgotten about completely - the stuff they give you via the cannula is really weird. It gives you a really strong unpleasant taste in your mouth, the staff described it as metallic but that wasn't quite how I found it. It was very bitter. It makes your face go hot especially around your mouth and nose and weirdest of all it gives you the sensation that you're peeing yourself. But you're not, thank goodness. 

None of that lasts more than a minute or two, and the procedure itself is very quick too, the bed moves through the big donut shaped thing a couple of times and then you're done. 

Easy peasy. Go home and have a nice cup of coffee. In a proper cup.

This evening there was a show on TV about the benefits of exercise for people with cancer. It was really compelling. I talk about the benefits of exercise quite a lot. It's possible I talk about the benefits of exercise more often than I exercise. It's good these reminders to actually get up and do it come along from time to time, as I do tend to drift away from my regimes to the point that I need a good shove to get back into it.

So I know you've all heard this before, but as of tomorrow - I intend to do my exercises daily and go for a short walk daily. Feel free to encourage/nag me as much as you like in regards to this!

And now we enter that strange place between a scan and the results. Which is similar but slightly different from the strange place between the results and the next scan. It's all strange places now. 

On any Tuesday last May, I was riding my bike to the rowing sheds in the morning before work, 6am I think? Then going for a row, then I'd cycle to work, work all day, then ride to my friends house for dinner - I'd arrive puffing and sweating despite the cold weather as the route has some massive hills. There I'd try not to stay too late chatting as I'd been up since 5am and had work the next day too and would ride home. What should I be doing this year instead? I shouldn't dwell on it.