Round 16 Day 1 - About that Gig Thing?

Or as it turns out, Cycle 4 Round 4 Day 1.

Technically, I have not been listing my chemo treatments quite correctly. I have had 16 rounds of chemo. But the first Cycle was the FULFOX6. The Capcitabine/Avasitin mix was Cycle 2. Each change in drugs is a new cycle.

Unless I have the cycles and the rounds mixed up. And perhaps this is only Cycle 3.1 not 4 as it's a modification of 3 not a total change....

And I think I'm a little set in my ways now. I'm happy with my own way of counting. It has been illuminating for me though. Despite my fairly diligent note taking I have totally failed to make a clear note of changes in regime. I've got all the content but forgot the titles. This highlights how tricky it can be for a complete novice of medical stuff, and how important it is to not only take notes, but the right notes.

Anyway.

My appointment for chemo was booked for 8.30am. 

But there was a few problems with that.

First, as mentioned in previous blogs, the appointments may be early, but the drugs are not always very punctual.

Secondly, its very cold right now. This makes getting up early and moving at a normal speed quite a challenge.

Sun and Snow on the Mountain this morning. Pretty. Cold.

But probably the main issue is that the best I ever feel from fortnight to fortnight, is of course the day before the next treatment. So? My sister is visiting. And the Bennies were playing at the Brisbane. I missed them last time as I felt too sick. So, well, I had to go! Right?

Fantastic show by the Bennies. The support acts, Axe Girl and Clowns were excellent too.

I had an awesome night out. Sometimes I felt vulnerable. But sometimes I felt like a normal person. 

I arrived for chemo at 10am this morning. Despite running so very late we still walked in. Walking in has become a really valued habit for us.

I'm not convinced about this photo. It's either the best or second best of a bad bunch. Dave persuaded me to use this one. I've run out of dresses. Sort of. I do have more dresses, but they are my work dresses or my two super posh dresses and I don't want to wear them to the hospital. So I need a new dress code. I've decided to go with Band T-Shirts. I love band T-shirts. A bit too much. This is my Pixies 2005 tour T-Shirt. We saw them at the Alexandra Palace in London. It was an utterly epic gig that we only just got to in time after work.
The skirt is a bit of a favorite too. When do you get to start calling things vintage? I got it in 1999 or 2000. Its sort of padded so its nice warm.

My drugs had already arrived but luckily (sort of) the nurses were really busy early in the morning and my lateness worked out quite well for them too. At least that is what they were nice enough to tell me.

After chemo, I went to the gym. Late. They were good enough to squeeze me in. Again. This is really good because it means a lot to me to get to the gym on a chemo day as it really improves delivery of the drugs, boosts your immune system, helps manage fatigue, and makes me feel happy.

After the gym, I went to lunch. On time!! Does that say something about my priorities? It was an informal work gathering to celebrate our Director Kellie heading off to Rio soon as lead physio for the Australian Rowing Crew. Exciting stuff, and as usual, I just love an excuse to catch up with my work team. Such an amazing bunch of people who have really had a massively positive impact on my life, before and after diagnosis.

By the time Dave and I walked home we were both pretty tired! We had a bit of a rest before having a lovely dinner with family and watched one of my favorite movies. It's late now but I really wanted to get this blog out today. Good night! Keep warm!

Round 15 Day 1 AND Young Surviors: Celebrate survivors and loved ones

Chemo was booked for 9am today. So at 8.30am we started walking into town.

We arrived at 9.01am I think. My chemo drugs arrived at after 10.30am. I think I've said before about how they have to be sent from the mainland. 

My next chemo is booked for 8.30am. But I'm developing trust issues about these early appointments now, I might just happen to be fashionably late next time.

I got very nervous about the needle going into my port today - when the nurse came to get it ready, she saw that the emla cream had not turned my skin white - which is generally your indicator that it has worked. 

I was very nervous - but it had worked, and I didn't feel a thing. Looking back now, I wonder if the combination of the walk to town and up the stairs, into a very warm ward, plus that my skin seems to be becoming more sensitive to dressings, had just made my skin redder. Also the nurse commented about how well my port scar had healed up, which surprised me, but when I looked I could hardly see it at all. It's back now - my skin must have just gone the same shade of red that morning.

Once the drugs arrived, it's only another hour or so before we're done. I'd missed my gym appointment due to the delays, but they squeezed me in anyway and I'm really glad they did it was a great session.

Then Dave and I had lunch at The Standard. Locals will know this is a Burger Restaurant. So bit a deviation from my usual eating guidelines. I've actually reached 60kg again, but I'd like to get a good 'buffer zone' of weight on me. 65kg would put me right in the middle of my healthy BMI range, and I can be as heavy as 72kg before I'm overweight. I've been making a real effort to eat as much as I can to put on weight recently. This sounds like heaven, but it's never fun to eat more than you want to. The goal posts have moved.

While we were in hospital the dietitian came and had a chat, which is always good. We talked about shakes and powders I can use if I ever go back on the Irinotecan, which I may well do at some point. It's good to have some plans in place.

I was pretty tired by the time we walked home.

Here's the final part of Young Survivors Week from Bowel Cancer Australia:

________________________________________________________

Celebrate survivors and loved ones

Wrap up the week by organising a get-together with friends and family during Young Survivors Week to recognise and honour people in your community who were diagnosed with bowel cancer under the age of 50. 

You may also like to make a donation to Bowel Cancer Australia or organise a #Never2Young fundraiser (online or offline).

Additional support from Bowel Cancer Australia Launched in 2014, Bowel Cancer Australia’s ‘Bowel Cancer... You're Never Too Young’ initiative was created to provide bowel cancer resources uniquely designed for younger people.  Offering practical and emotional support for the growing number of young people affected by bowel cancer (and their loved ones), championing what matters most to young survivors, while challenging perceptions through dynamic campaigning that raises awareness and motivates action in all young Australians. 

Useful links: 

Download our patient resources 

https://www.bowelcanceraustralia.org/free-bowel-cancer-patient-resources#Never-Too-Young-Resources

Never Too Young website 

http://nevertooyoung.org.au

Chat to a Bowel Care Nurse or Nutritionist https://www.bowelcanceraustralia.org/finding-support

__________________________________________________________

I have not organised a get-together. I hope to attend to Dark MOFO's Feast at least once next week, does that count? I'm sure I'll see some of you there. 

There are a lot of great links here if you want to find out more (I think I've finally worked out how to do links properly on blogger!). If anyone has any questions for me, or does want to organise a proper thing, let me know if there is anything I can do to help. Like you know, blog about it? Does that help? Not sure!

But thanks for reading! I'll try not to hassle you with charities and awareness and the like until next Friday.

Be an advocate

Young Survivors Week day 4: Be an advocate

Hi everyone, I hope you're not all feeling too overwhelmed by all the posts lately. Although I'm very worried I'm making a nuisance of myself, I'm finding they are really inspiring a lot of ideas for me too. Sometimes it's a real effort to find the words, but they are just pouring out at the moment!

Once you get sick, you hear a lot about 'being your own advocate'.

I feel like I entered into the world of cancer not even understanding what that meant. Soon I came to understand it as having an expert knowledge of your condition, and telling your team what to do instead of them telling you. Which is difficult to do and makes you a difficult person to deal with.

Now I understand it better. It's important to ask questions. You may have to ask to have things explained to you. It's important that your team knows and understands your priorities and values. It's important that you are satisfied with your team, and if you're not, you take action. It's a good to know the names of all the drugs you are taking, the potential side effects, and what to do about them. You should make sure your team are all communicating appropriately and being kept in the loop regarding your treatments and results. It's good to not just sit back and let everyone else do the work. Of course when you're unwell, sometimes you can't do anything for yourself, but when you do get the opportunity, it is really good to take action. You may not be personally discovering a cure, but even the smallest actions can be a big help.

Up until this morning, I've often felt like I'm failing abysmally at 'being my advocate'. I consider myself 'easy going' and unless I keep myself in check I can overthink other peoples feelings to the point where I'm afraid to do or say anything in case of upsetting or offending someone. I still felt one needs to be assertive to be an advocate.

But this morning, when I met with my Oncologist I started a conversation with her that changed my mind. This morning - I tried to apologise to her.

See here is the thing. She is very highly qualified. She is an expert in her field. She has an amazing reputation, nearly everyone on my team has heard of her, and everyone who has praises her work.

And yet, nearly every single time we meet, I say to her (among other things) things that start with phrases like 'I read this article on facebook...' or 'My friends uncles mate took this supplement...'.

And it just occurred to me this week - that's kind of insulting, right? She is the person most qualified to keep me alive, and here I am telling her about hearsay and social media. (Facebook articles... farticles?)

But she wouldn't have it at all. She told me I am actually doing exactly what I should be in my situation. 

And after that it struck me - I am successfully being my own advocate. 

After that I could see all the other pieces fall in to place: I have a great team - I am highly satisfied with everyone involved. I trust them all, and feel comfortable talking to them. 

As I'm writing this, I went to amend 'team' to 'medical team', but actually, my 'team' can include EVERYONE around me. My friends, family and colleagues are having a positive impact on me too. 

Well done you! Thank you for being awesome.

Bowel Cancer Australia says:

_______________________________________________________

Be an advocate for your own health, and feel empowered to make your own choices about your health and wellbeing. 

While the disease is more common in people over 50, you’re never too young to have bowel cancer, so regardless of age don’t be afraid to discuss your symptoms or concerns with a health professional. If you have a family history of the disease you also need to talk to your GP. Don’t be afraid to ask for a second opinion. 

For additional support, our trained staff are here to answer your questions at any stage: from prevention and screening; to diagnosis and treatment; to general support. Contact our Bowel Care Nurses on 1800 555 494 or visit [link]. 

Find out more about becoming a #Never2Young Champion, sharing your Bowel Cancer Story and joining Bowel Cancer Australia’s Peer-to-Peer Support Network. 

_______________________________________________________

Phew, you made it to the end! Have a flower photo. :)

Young Survivors Week: Know your family history and genetic risk

The theme of today is: Know your family history and genetic risk

Bowel Cancer Australia say:

_____________________________________________________________________

Around 25 per cent of patients have a family history or genetic inheritance, both of which significantly increase a person’s risk of developing bowel cancer.

Young Survivors Week is a good time to bring up the subject with loved ones and learn about your family history and genetic risk factors.

An estimated 900 Australians diagnosed with bowel cancer each year will have an underlying genetic cause, yet some don’t realise it. In families where there is a clear history of a genetic risk factor, screening is recommended from an earlier age than the general population.

On the other hand, anyone who is diagnosed with bowel cancer under the age of 50 could be harbouring a genetic inheritance without knowing it, and should also consider speaking to their doctor about genetic screening.

The most common genetic causes of bowel cancer are Lynch Syndrome and Familial Adenomatous Polyposis (FAP).

_____________________________________________________________________

Felicity says:

Firstly - a Shout Out to my lovely family. I'm not always the best in keeping in touch. OK that's an understatement. Luckily my family are very lovely and understanding!

But here's a tip. If you haven't spoken to a family member for far too long - when you do get back in touch with them, it's nice if it isn't to say - "Hello, as I've been diagnosed with bowel cancer I'm having genetic screening and it would be really great if you could let me know in advance if you've ever had any cancer diagnoses. Oh and you may have increased risk now as you're related to me".

There is a still a lot of stigma around ill health. While it is of course it's ones own personal matter, and privacy and confidentiality are very important and should be respected, this experience taught me that it can also be a really good thing to share! It also reminded me that I should talk to my rellies more often (which I already knew). I would suggest, that anytime that you find yourself being diagnosed with an illness, don't forget to include in your questions - 

• Are any of my family at risk? And if so - Who? And what steps should they take?

So my advice today is - stay in touch! It's good for your health and it's great for your well-being :)

Oh, I suppose I should let you all have a picture today:

Me and my awesome sister in Manly Beach in 2013

Young Survivors Week: Recognise the symptoms

OK I may have got a little over-enthusiastic in my first post about Young Survivors Week, I went off on a big waffle about checking yourself, and knowing the symptoms, but I should have saved it for day 2!

Never mind, its such an important message it bears repeating.

Here is what Bowel Cancer Australia have to say:

_______________________________________________________

Signs of bowel cancer may include: 

• blood in the bowel movement
• unexplained weight loss 
• persistent change in bowel habit 
• severe abdominal pain

If you’re experiencing pain, bleeding or other symptoms, talk to your doctor right away.

Nobody knows your body better than you, so be aware of any changes and don’t assume bleeding is caused by haemorrhoids. 

Young people with a family history of bowel cancer, irrespective of symptoms, should see their GP as soon as possible for individual advice about surveillance.

_______________________________________________________

But here's the thing, you might not get ANY of the above symptoms. 

Here's what was happening to me, I can recognise it looking back, but at the time I was completely oblivious.

I was getting mild abdominal pain a bit too often. So mild I was able to fob it off on something else. "I must have eaten too much, must have eaten too late, must have eaten something funny (I eat a lot!), must be an irregular period pain etc". 

It's entirely possible that the pains I was feeling was not the tumor, but constipation caused by the tumor. That means if you have a tumor that isn't causing much of a blockage, you might not feel anything!

I was also sleeping more and more - as if I was depressed, except I wasn't depressed, in fact I was utterly high on life in mood. I  told myself I was lazy, slobby, or perhaps I've got a little bug - sleep is very restorative after all, I even tried to embrace it a little seeing as I couldn't seem to snap out of it (ah, treating myself to another lie-in) Never mind I couldn't get out of bed if I tried. I don't think I'd ever been fitter, I was exercising a lot, but it didn't seem to give me any more energy, as being fit is supposed to.

I gained a bit of weight (I must stop snacking on toast when I get home from work). Then I got a pot belly (LOL look at me, I really must review my eating habits) Then I lost a bit of weight (I must be doing something right, perhaps the exercise has started to pay off).

So many small insidious little things, so easy to ignore. So easy to dismiss as something minor, dismiss as nothing, stop being a wimp. I've had chronic joint pain since I was 15. So I've been practicing ignoring pain for 18 years.

So keep a close eye on yourselves everyone! It's easy to loose track of how long a 'niggle' can go on for - mine had been going on for months. I'd suggest making a note in a calendar or diary when you feel 'off' in some way.

Early detection makes a HUGE difference in prognosis. If you feel like sharing your tips for keeping tabs of your health I'd love to hear it!

I hope I haven't scared anyone - definitely not my intention. If I have caused any paranoid feelings the best thing to do is talk to someone about it. You're welcome to get in touch with me if you like. Or your GP - or just anyone! And remember, chances are you are fine, chances are the niggles everyone gets from time to time are just that BUT peace of mind is a wonderful thing, so if any of this has disturbed your peace of mind, please go get it back with some health checks.

Young Survivors Week

Today is the start of 'Young Survivors Week'.

This is a drive from Bowel Cancer Australia to raise awareness of the rise in young people being diagnosed with Bowel Cancer.

You won't be surprised to hear I intend to get as involved as I can. 

I'd also like to extend this drive to acknowledge all Young Survivors, not just those with Bowel Cancer. 

After being diagnosed, I joined a young adult support group, and have connected to many related organisations online, and yes, bowel cancer in young people is on the rise at a scary rate, but there are so many other young people suffering other cancers or chronic diseases. Young Bowel Cancer Survivors are not the only Young Survivors out there. I'm sure Bowel Cancer Australia worked hard to come up with the catchy title of 'Young Survivors Week' but seeing as they did not go for 'Young Survivors of Bowel Cancer Week' I would hate to marginalise other Young Survivors. This is partially inspired by the frequency of times in which I've clicked on links that seem to be speaking up for people with cancer, only to find it is just breast cancer specific. It happens all the time. It's a big subject that I really should dedicate a proper post to. I've digressed enough - this is about Young Survivors Week.

So today the idea is to share a photo and a piece of advice.

Here is the photo. We took 11 photos and this was the only one where I'm not pulling a really funny face (just a slightly funny face). Wow I think I look so much older than I did a year ago.

And here is my 'one piece of advice':

Check yourself! And not just for bowel cancer. 

Even before I was diagnosed, I would often tell myself that ones body is the most precious thing we own. Its the only thing that we truly own. And it needs to last a lifetime. It deserves care and respect and maintenance of the highest priority. 

Despite that, short of my future self visiting me from a time machine, showing me test results and telling me to get a colonoscopy now, I don't think anything would have convinced me to get screened for cancers. I just didn't think I was at risk.

Many cancers have screening processes now. Get them all. I think we all know how and where to check for lumps these days, and the stigma behind that has been very well broken down now and that is great. 

My diagnosis was a massive shock, especially given my healthy lifestyle and complete lack of genetic risk. But I thought I'd be given a reason why I got cancer. They'd be able to pinpoint something that caused it. Well the reason I got it is because I have a living working human body, and sometimes human body's get cancer.

So if you have a living working body, and if you'd like to keep it for a lifetime, go to your GP, and tell them you'd like to be screened for all cancers. 

They might tell you that you're too young, that you are too low risk. I suggest you insist anyway. If they still refuse, get a better GP.

And the good news is, you don't have to go as far as having a colonoscopy to be checked for bowel cancer. It is the most reliable way - other tests can produce false negative and false positives, but they are still a good place to start. Bowel cancer can be tested with a stool test.

And the other thing you can do, right away, is get in tune with yourself. I was not in tune with my body. I took it for granted. I assumed it was fine.

For all I know there could have been blood in my poop for months or even years. I will never know though. Because I never ever looked at it. I always put the lid down and flushed without a second glance. 

So even if you don't do anything else, start looking at your poop.

Here is a link if you'd like to read a bit more about the signs of symptoms of bowel cancer.

https://www.bowelcanceraustralia.org/understanding-bowel-cancer/signs-and-symptoms-of-bowel-cancer

If you do decide to act on any of my advice that is wonderful, it's totally your own private business but if you feel like sharing your actions that would also be wonderful. I don't need to know what your poop looks like, but knowing that you know what it looks like would be great.

Cambodia Gutsy Challenge

I'm going to be doing some shameless promoting during Bowel Cancer Awareness Week.

This is my first proper blog post of this nature (not including the odd facebook share) and there will be more, so I want to add a sort of disclaimer:

You're not obliged in any way to take part in any stuff I promote. Please don't feel pressured. Please don't feel bad if you can't/won't get involved. The last thing I want to do is make anyone feel like that. My intention is to spread the word about stuff like this, I'd be crazy not to, but I have no expectations of anyone.

What I hope is you enjoy reading about this and other causes I promote, just as I hope you enjoy reading any of my blog - I feel this is a legitimate part of my cancer experience, and I'm taking the time to write a 'real post' rather than just hitting 'share' on facebook.

The GI Cancer Institute are holding an incredible fundraiser later this year.

This October, participants will cycle 360km through Cambodia. That's pretty epic. I imagine it would be challenging, rewarding and I know it will raise a lot of money towards researching GI cancers.

In the past I have to admit being a little confused by expensive sponsored events, but they raise a lot of money while providing a very meaningful experience for the participants. I've sponsored many walks and runs and similar events in the past, and think they are a fantastic way to raise money. 

I've come to realise that this is not 'getting a holiday sponsored' but a kind of step up or 'raising the stakes' from smaller (but still very meaningful) events. I actually rang up Anne who is coordinating this and asked her why is this different to me saying "I'm off to Melbourne for the weekend - who wants to give money to charity on my behalf". She explained it to me much better than I have here!

Obviously this kind of event is not for everyone - not for many people at all actually. But it could be a really great experience and rewarding opportunity for some. And there are lots of ways to get involved without actually going to Cambodia, such as sharing it to raise awareness, or sponsoring participants. 

I've copied and pasted this info directly from their website:

Dates: 15 – 24 October 2016

Registration fee: $700 (non-refundable)

Fundraising target: $3,500 (excludes travel)

Travel costs: $3,000 including taxes 

Trip duration: 10 days

Challenge duration: 7 days

Accommodation: Twin-share in 3 star hotels 

Minimum age: 18

Here is a link to their information page if you'd like to know more.

http://www.gutsychallenge.com/challenge-type/biking/

Or you can email/message me with any questions.

Or you can Contact Anne on 02 8036 5220 or anne@gicancer.org.au

Round 14 Day 1

Round 14. That  I was dreading so much until the day before when my oncologist took out a couple of drugs.

I'm well acquainted with this fabulous tree - I've walk past it on the way to town often. This time of year it looks amazing.

Dave and I walked to town as usual. I had the gym first. I didn't have time to do all my exercises but my wonderful colleague and physio picked out the best ones to do then and there, and what I could do later, so we really made the most of our time. 

We'd popped into the clinic to pay first, where I bumped into more colleagues and got some love and support and very importantly swiped a couple of slices of yummy chocolate cake as Friday is cake day at work. 

(Usually cake is off the menu in my 'cancer eating regime' however, my appetite has been so bad the last 2 weeks, I've given myself a new temporary regime: If I think I could eat it, I eat it - once I'm back over 60kg I think I'll tone it down again).

Cake: Back on the menu. For now.

Next was yoga. Wonderful and relaxing and energizing as usual. 

PSA from the yoga studio.

I applied my emla cream when getting changed from yoga, met Dave again and we headed to the hospital. The stairs are getting harder. I went up some of them backwards to mix it up. That was really hard!

I wore this orange dress. I've worn it before to chemo before. I'm actually running out of new outfits. But this is OK. Because I love to break that 'but I've worn it before' rule that seems to exist for outfits. Actually, it's really great to have just one 'party dress'. No spending ages choosing what to wear, or traipsing around shops looking for something new then spending money on something you may only wear once. No returning to a dress you've not worn for years to discover it no longer fits. Just one or two great staples, collecting great memories. On the other side of the coin, I don't really want to end up with a 'chemo dress'. That is not a label any of my lovely clothes deserves.

And the chemo. Cetuximab, but no Irinotecan or Fluorouracil. Can't remember if I had Leucovorin or not. Must check that....

I did my Home Exercise Program while receiving chemo again this week. I was anxious to get it done before I started to feel too fatigued. I draw the curtains as seen in the picture above, as I'd feel silly doing them in front of all the nurses and patients in the ward.

I love my bottle. Its great. It provides me with life-saving treatment. And allows me to receive these drugs in the comfort of my own home instead of having to stay in hospital all weekend. Must save the hospital a fortune too! And I was so delighted to not have it at all this round! I really don't miss it!

The fatigue was pretty mild at first. Dave and I walked home again. After round 13 I was afraid I wouldn't be able to walk home again. But it was fine. We stopped at a nice patisserie on the way home and treated ourselves to a coffee and a late lunch. I say coffee, but that is one of the things I've been off lately. I had an apple juice. It tasted a little sour. Dave tells me it was actually very sweet. But I drank it all. And I ate well. All in all, this round has been very mild, comparable to my avastin/capcitabine treatment. Which has been awesome.