Thursday 28 July 2016

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.

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.

Friday 22 July 2016

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, 25th 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 11th 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……..

Tuesday 19 July 2016

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!

Wednesday 13 July 2016

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!

Friday 8 July 2016

Round 17 Day 1

I think I'm settling back into the fortnightly routine.

The last week has seen a gradual build up of busyness, ending with a packed day of chores and socialising on Thursday before chemo.

Mind you, I'm finding that chemo day itself tends to be a really busy day too.

After a fun but later than expected night on Thursday, I struggled to get up and ready in time for my 9am appointment at the hospital. We arrived at 10am, but were once more informed that this way by no means a bad thing. My next appointment is also booked for 9am. No prizes for guessing how that is going to pan out.
My treatment was uneventful. The only thing of note was that I succumbed to hunger and ate the hospital food provided.
Today I wore my signed CSS T-shirt. I got this in 2011 when we saw CSS play at the Corner Hotel in Melbourne. The design features the words 'Sometimes life is so rad all I want is to scream a BIG YAY!!!' which is a nice positive message. It doesn't have tour dates on it though. I've got lots of band T-shirts that don't have dates on, I've banned myself from buying any more now.

We got out of the hospital shortly before 1pm. After a brief 'hello' to the guys at work, I did a slightly reduced gym session, then Dave and I walked home.

Then we went out again.

We did some pet sitting recently and we enjoyed it so much that we are doing some more this weekend. This blog was originally written with pen and paper, away from my laptop.

I'm tired. But today, actually this whole week, I've been struck all oever again by how lucky I am to be surrounded by such wonderful people. it really is amazing and has such a positive influence on my life.
The clouds were pretty cool this morning too! BIG YAY!!!

Wednesday 6 July 2016

Hair things and Sharing

I often find my blogs really easy to get started on, and really hard to wrap up. I do my little paragraphs about the things I did that day, but I never want to include the last bit which would nearly always be 'and then we went home and had dinner and went to bed'. Because it's not very interesting. Or relevant. 

But on my last post I omitted something because I thought it was not interesting or relevant.
Then, at 1.30am I realised that it was actually a pretty significant event.

After Chemo then Gym then Lunch last Friday, I went and got my hair cut. And after nearly twelve months I finally told my hairdresser about my illness.

Telling people is hard. Every time. Whoever it is. I've been practicing on telemarketers (Sorry telemarketers - I know you have a tough job, but now when you start by asking me how I am, I'm much more honest and direct!).

So telling people is hard. And looking sick is hard. And so far, considering the circumstances, I've been lucky enough to keep both to a minimum.

The massive burden that is sharing the rotten news of my diagnosis has been shared beautifully by all you lovely people. Many of you took on the unpleasant task of telling others so I didn't have to. Thank you!

And because I've looked disproportionately well for most of my illness to date, I don't HAVE to tell people. When I'm out and about, people don't look at me and wonder what is wrong with me (I think!). This gives me a wonderful snippet of control and normality, which only occasionally backfires.

And this is how I've managed to get my hair cut for nearly 12 months without telling my hairdressers, who of course always ask how I am and what have I been up to. I can say "I'm good thank you" (meaning today I'm up and dressed) and "Oh I had a lazy weekend" (meaning I was sleeping for 18 hours a day with Chemo fatigue) without actually letting on.

I know that there is a technical difference between telling a lie and not telling the whole truth, but the moral difference is not so clear to me, and I've never really felt fully comfortable about my veiled answers at the hairdressers. Even though I also know I am under no obligation to disclose my illness to everyone.

So today I told my hairdresser. She gave me a hug and asked me a bit about it, and told me a bit about some other cancer patients she knows. And it was fine. 

I think I'm beginning to be able to tell quite quickly the people who have been affected by cancer before by the questions they ask you, and the things they say. There are of course no wrong questions or things to say. But there are sort of 'beginner' and 'advanced' questions. And that's fine. 

Hair things:
Of course the other fairly obvious factor which has contributed to this entire scenario is that I haven't lost my hair.

The particular drugs that are used for bowel cancer don't tend to cause hair loss, although its not entirely unheard of. Breast cancer treatments are among those most likely to cause hair loss I believe.

The cetauximab that I am on at the moment is wreaking havoc with my skin, including my scalp. I've gone from noticing about one stray hair on the comb every other day or so to perhaps as many as twenty a day. I'm sure I don't spot them all. I've read online that the average person looses 50-100 hairs per day. I'm not totally convinced I've hit average yet.

I'd give up my hair forever, in a heartbeat, for a more effective treatment. To me that would be the smallest of prices to pay. It doesn't work like that of course.

I've shaved off my hair 3 or 4 times in the past. It provokes different reactions. With my current 'normal' hair,  I occasionally will get a compliment. With shaved hair, you get a much broader range of comments. 

I tend to be unsure of myself in many elements of my life. But my hair is not one of them. I'm totally confident that my hair is my business. I think shaved hair looks great. So does long hair. To me its like a bonus accessory.

There are two really important things for me to recognise though.

1. I think that shaved hair is a perfectly legitimate hair style for men and women, but not everyone does.

2. Whenever I've had no hair in the past, it was on my terms, it was by choice.

I've put this bit at the end, as this has been a bit of a long post and it's been an effort to keep away from ranting. Hopefully I've succeeded! Below, if you're interested, are some of the comments (that I remember) that I've received when I've had shaved hair before, most of them from strangers.

  • I have a great shaped head (I've been told this so many times by so many people I've finally decided to believe it. Thank you!)
  • I've been mistaken for a bloke on many occasions (no offence taken).
  • I've been told that it's wrong for women to have hair like that. (Always by older men)
  • Am I unwell/what's wrong with my health?
  • Did I get nits/have some sort of incident?
  • Why would I do such a thing? (No ones ever asked my why I would get a fringe or a ponytail)
  • I'm so brave to do that to myself.
  • They would love to do that too but they can't. (Always by women).
  • Once I asked a previous employer if I could shave off my hair, and I was told no (even though we wore hats anyway) and immediately told I could not get facial piercings or tattoos either. (neither of which I'd expressed any interest in getting).
  • Questions about my sexuality. (Or should I say, many more questions, the answer to which is of course, not important or anyone else's business).
  • What does my husband think of it? (I do value his opinion, and seek it often - regarding many things, none of which tend to be about hair cuts. And this is about the only time people who have never even met my husband want to know his opinion).

Most of these things re-enforce the stigma that seems to surround hairlessness. Which is complete madness in my opinion. And must make it harder for some people who have not had the choice. 

Sometimes I wonder what it would be like if chemo gave people other sometimes stigmatized hair styles like mullets instead? Or seemingly prized styles like super straight hair or whatever it is that's in style at the moment (I have no idea). Would people get told they are lucky? To look at as a 'bright side or 'sliver lining'. Quite possibly. How people feel about it is down to the individual, and there is no right or wrong. If everyone kept that in mind, I doubt I'd have got so many of the comments above.

And now I'm at that bit where I'm done writing and don't know how to wrap up. So.... thanks for reading! The end.