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!!!

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.

Sharing:

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.

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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.

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:

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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

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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:

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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. 

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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:

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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).

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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:

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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.

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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.