Blog posts

Feeling frustrated?

Thu, 02 Feb 2012 10:15:1328177700 GMT

Our regular guest blogger Toni Lindsay undoes the Frustration Button!

The Frustration Button….

Have you been feeling like your tolerance for everything is lower?

Get grumpy or snappy without any reason?

Explode and then feel really bad for what you have said?

It sounds like you are feeling pretty irritable and frustrated….

Is this weird? Nope. When cancer is around almost everyone has some level of irritability, frustration and anger. It might be all the time or it might just be occasionally (like when someone eats the last piece of chocolate!).

It may not be weird or abnormal, but is it a problem? Well, I think if you are feeling pretty irritable and unhappy then it’s probably a problem.

Its unpleasant to feel like this, and I imagine that it is isn’t particularly pleasant for the people around you either! Not to mention that its probably having an impact on work/school/friendships/sleep etc.

People often talk to me about feeling that they are like a rubber band ready to snap at difficult times, where they feel stretched to the max, and everything is causing the band to stretch that little bit further.

When your life is good, and you don’t have a worry in the world, little stressors don’t seem to matter much, for instance if the dog knocks over your cup you will probably laugh about it, and just clean it up.

But when your world isn’t such a nice and pleasant place (add in some cancer treatment, sadness, pain etc), everything becomes much more significant and harder to deal with. So when the dog knocks over your cup, it feels like a massive issue, it irritates you, you probably yell at the dog and have that wave of feeling overwhelmed. Then afterwards, you might feel very remorseful and beat yourself up for getting cranky.

So, what do you do about it?

Firstly, stop beating yourself up. It’s normal to feel like this at difficult times. If you can accept that this is the way you are likely to feel then it makes it seem a bit more controllable.

However, it’s unlikely that this will resolve quickly, so you need to put some things in place to help you manage.

Some of the things I have talked about before will be helpful, such as exercise, taking time out from home, keeping your world as normal as possible, doing things which make you feel good, sleeping well etc (Refer back to earlier blogs!).

Also, sometimes the strategies that you use when you have been angry or felt out of control might help here. Find an outlet for your feelings, like writing them down, singing at the top of your lungs, composing a rap song, running as hard as you can for as long as you can, punching something soft (never a person!), talking it out with someone, playing a video game that lets you zone out for a bit etc etc.

Again, if you feel like you aren’t managing well, and the above things don’t work, seeing a counsellor will be helpful for you to get some more strategies which will work specifically for you!

Scar Stories Photography Exhibition!

Tue, 31 Jan 2012 02:47:1327978020 GMT

Scar Stories’ Photography Exhibition; Seeing cancer scars in an empowering, creative and beautiful new light!

Congratulations to regular Now What blogger and cancer survivor Jasmine Gailer for the amazing ‘Scar Stories’ exhibition! Scar Stories was an photographic exhibition of cancer survivors who bravely had their portraits taken to reveal scars that are so often hidden from public view.

The purpose of this Brisbane-based exhibition was three-fold:

to raise public consciousness of adolescent and young adult cancer;
to raise funds for CanTeen; and
to help young cancer survivors see their scars and experiences in an empowering new light.

We look forward to hearing about how it went, and hope others will be inspired by this awesome creative project!

You can like Scar Stories on Facebook and check out some pictures from the event too.

Resolutions...

Wed, 11 Jan 2012 02:25:1326248700 GMT

Guest blogger Toni Lindsay talks SMART goals to help you achieve your new year resolutions.

Happy New Year avid blog readers!

Since this is the time of the year when most of us re-think where we are at, make priorities for the year ahead etc, I thought a fitting blog topic might be around setting goals and sticking too them (I can hear the yawns from here!)

It is important to re-evaluate things at different times in our lives, and often New Years seem to signal the beginning of something new, and most people make some kind of resolution. And most people fail in the first week. Usually because they are unrealistic, like, I will never eat chocolate again, I will exercise everyday, I am going to bound out of bed singing songs from the Sound of Music everyday (I hope this one fails!). People tend to forget that life will get in the way of all of these plans. Resolutions are much more successful if you have a realistic plan about how to achieve them.

Sometimes, goals for the New Year may not be so tangible. It may be that you just want to make it through the rest of your chemo, or come up with some ways to make the horrible days in the week a bit more bearable. I have had some people say to me things like, ‘this is the year that everything will be better’. Unfortunately, for ppl in the cancer world, there is often not a clear cut way of just resolving the cancer stuff just because it’s a new year. There will always be times in your life which are difficult and hard to manage, so it makes more sense that you find ways to make them easier to cope with, rather than thinking they won’t be there at all!

So, I am sure that you have all heard about SMART Goals…

Specific

Measurable

Achievable

Realistic

Timeframed

Basically, the idea of this is that you work out ways in which your goals can be manageable, realistic and able to be achieved. So instead of saying ‘I’m going to be healthy this year’ its something like, ‘this year I am going to make sure that I eat vegies at least 3 nights a week” and it works for most things. So the example I gave earlier ‘I’m going to make it through chemo’ needs some more specifics in it, like how are you going to make that better for yourself? What about chemo do you need to work through, is it the nausea, the boredom of sitting in hospital etc? Basically, the more specific the goals the better. Does this goal look like….”For the next 3 cycles, I am going to listen to 4 songs while my chemo is being hooked up, as that helps me stay distracted and I feel less sick, even if I don’t feel like listening to music when I get there”?

Also, it’s better to have lots of little goals rather than one big goal, that way if one or two fall by the wayside you still have some sense of achievement. What’s that old expression, something about putting all of your eggs in one basket? It’s the same with goals, if you put all of your energy into one thing, and then it doesn’t work out, you will feel pretty deflated. And if you miss one goal once, don’t throw your hands in the air and throw the whole thing away, tomorrow is a different day!

So, come on Now Whatters! What were your goals for 2012?

Got a cool health app idea?

Wed, 07 Dec 2011 00:10:1323216600 GMT

Youth cancer is an important health issue and more needs to be done to try and encourage innovation in this area.

The Youth Mobile Health Competition aims to do just this. The competition calls entrants to submit their idea for a new and interesting mobile application/initiative that will help young people with cancer to better manage their conditions and/or make their lives easier.

It is an international competition and has been made possible through the partnership of cancer organisations from around the world, including EyeforPharma, CanTeen, Teenage Cancer Trust, Livestrong Young Adult Alliance and more.

The competition will be judged by a “Global Superpanel” made up of young people who have or have had cancer as well as representatives from the competition partners. There will also be a public voting element to the judging process.

The competition is open to anyone (from anywhere in the world). But if you’re a young person who has or has had cancer, your experiences put you at a bit of an advantage, so if you’ve got a great idea for a mobile application to make your life and the lives of other young people just like you easier, then this competition is for you.

The winning entrant (amongst other things) will be invited to work with the competition partners to turn the idea into reality. For more details on how to enter or just to find out more about the competition visit www.mobilehealthcomp.com

Prizes for the winner include:

$5000 to donate to a cancer charity of your choice.
An invitation to work with our partners to turn your idea into reality.
An invitation to attend and speak at the eyeforpharma Oncology Conference in Philadelphia, USA on your idea. Including travel and accommodation.

I go to sleep... or maybe not!

Tue, 06 Dec 2011 02:47:1323139620 GMT

One of the most common things which can appear when there is a cancer diagnosis made is sleeplessness (or insomnia). Guest blogger Toni Lindsay delves into this topic in this week's blog.

People often describe either trouble going to sleep, or finding themselves waking in the middle of the night and finding 10000 things to worry about. It’s normal that in times of extreme stress (which a cancer diagnosis often brings) your sleep patterns get a bit out of whack, which in itself causes stress.

Trying to function on not enough sleep is like trying to drive a car without any petrol in it. When you have a good sleep, your energy levels are topped up and you will feel that you can manage whatever comes at you better. The other side of the coin is when you don’t have enough sleep, it makes it harder to cope, and people often find that they get more frustrated, angry and irritable.

So…..we have all been there, and know what it means to be exhausted and not be able to sleep, but what can you do to help you sleep better during this really stressful and emotional time?

Here are some tips……

Exercise (Yes, I know I tell you this in every blog). Exercise helps you wear out your body during the day, as well as all of the other emotional bonuses which come from getting out and about (see other blogs). The exercise you are doing doesn’t have to be hardcore training or serious athletic pursuits…more some regular walking, a bike ride etc. People often find that short bursts of activity which use up a bunch of energy are really helpful like sprinting, boxing or skipping. Note: If it is you that is sick, make sure your doctor is happy for you to do these things.
Limit things with caffeine and sugar in them (particularly after about 2pm) as these hinder your ability to have restful sleep. Similarly, although alcohol might make you feel tired, it actually is pretty terrible for your sleep cycle, so its better to not use it at all when you are trying to get your sleep in order.
Keep a note pad next to your bed, so if you wake up in the middle of the night you can write down the stuff that’s in your head, and tell your brain you will deal with it in the morning. Usually what happens is when you come to look at it the next day, big parts won’t make much sense, and you can disregard them.
Have a sleep routine. Do a whole bunch of things which are nice and relaxing before you go to bed, such as taking a bath, listening to relaxing music, having a glass of warm milk. Try not to watch tv, or read a book, as these things tend to stimulate your brain and interfere with you going to sleep.
Your bed is for sleeping. Try not to do anything else in bed, like watching tv, reading, playing playstation etc. This lets your brain know that when you get into bed, it’s for sleeping.
Try not to nap during the day. Even if you are really tired, as this disrupts the sleep cycle and will make it harder to sleep at night. Also, get up at the same time everyday. If you find that you are feeling like a sleep during the day, its time to pull in some of the exercise we talked about at point 1. It will help you feel energised, and then you will sleep better.

If all of these things aren’t helpful, and the sleeplessness goes on for more than 1 week, it’s probably a good idea to touch base with a counsellor who can help give you some more hints and tips to manage this. If you are on treatment, and are having trouble sleeping its also worth mentioning it to your doctor, as some medications (like steroids) can cause sleeping problems!

Need to talk?

Wed, 30 Nov 2011 22:56:1322693760 GMT

Our guest blogger, CanTeen counsellor Elizabeth May, tells us that counselling can help young people cope with your parent's cancer.

Hi everyone, it’s lovely to meet you!

As I become more acquainted with young people and their cancer stories I am always impressed by your ability to reach out and grab support where and when you need it. It seems that family, mentors, teachers and very importantly friends and other young people in similar situations are huge supports and help you to process what you’re feeling and to keep some routine during difficult times.

For some people your existing support networks offer you all the space you need to express what’s going on for you. I am also aware that for others there may be times when it would be helpful to have somebody outside of your existing relationships that can offer a safe and confidential space to express yourself and feel heard, a space that is all about YOU!

There are different services all around Australia that specialise in offering support to young people with cancer stories. One of these spaces is CanTeen. CanTeen offers a FREE counselling service to young people age 12-24, who have a parent living with cancer or who have a parent who has died due to cancer. CanTeen’s counsellors are always interested in hearing your stories and are happy to talk about what you want to talk about. School? Friends? Relationships? Family? Cancer?...any of these sound familiar?

CanTeen’s counselling service is available all across Australia and depending on where you live you can choose from Face-2-Face, Telephone, or Online Counselling. If you’re curious to find out more about us or other services that might work for you, head to our counselling section and ask away! We will try our best to point you in the right direction!

In the next few weeks I hope I can blog again and share some stories about what counselling is and dispel some of the myths about what counselling looks like and who might benefit.

Fighting back

Mon, 28 Nov 2011 23:10:1322521800 GMT

This week our guest blogger Jasmine fights the fear of reoccuring cancer with physical exercise.

It's been a fortnight since my last blog but it feels like much longer. In fact when I saw Dave yesterday at the Prestige personal training studio it felt like I hadn't seen him in ages. I guess this is because a lot has happened in the short space of a week.

On the positive side of things I have been working very hard on a fundraising exhibition I am organising. The plans are coming along nicely and it's a nice distraction from the negative things that have happened: the death of a friend and some unusual scan results.

In the past I might have thought that it couldn't have been much worse than this. But I have definitely "evolved" as Dave says. I told him, with a look of exasperation that I was morphing into him.

But in all seriousness, Dave's influence has been nothing but positive for me over the last few months. On top of feeling fitter and healthier I feel mentally prepared to deal with whatever comes my way.

My attitude towards recurrence, my biggest fear, has changed. I am ready to fight. I do believe, and I'm sure Dave will concur, that mental and physical health go hand in hand. My physical health has improved out of sight. I can feel it in my every-day life. I am using my bad leg more and more, I pick up my friend's kids with grace and ease as people gasp and say "Jas, be careful!", and I am on the top of the score board for the handball tournament at Outside School Hours Care (don't judge me for not letting the kids win!!)

Most obviously though, is my improvement in the studio with Dave. I am now lifting 25kg on the bench press and I feel my punches getting harder during the boxing exercises. Next time I see Dave we will be doing my measurements so that we can track my improvement.

We probably should have done these earlier because I can tell I've lost a lot of weight and others have even noticed my muscle tone improving. But when I first started training I was still quite self conscious and I think Dave could tell, and so he didn't push the issue.

The only problem I'm having at training now is mind over matter. Some tiny little thought keeps popping up during weight sessions saying, "you can't lift anymore," and then I can't! Dave knows I can and it's my challenge now to stamp out the thoughts and keep going. This attitude was non existent in me six months ago. My self confidence has tripled over that time and it's showing.

I'm ready to face bikini season head on. I'm ready to fight a recurrence if it comes to that. I'm pushing hard to reach my goal to walk up the steps normally at Dave's studio by New Years. All in all...good stuff is happening.

Are you a cancer survivor?

Thu, 24 Nov 2011 00:52:1322095920 GMT

Young adults who have survived cancer are invited to participate in a research study to learn more about the effects cancer has had on your life and your sense of meaning and purpose in life.

The study is being undertaken by Danielle Tindle as part of her PhD research project titled “Conceptualising meaning in life: The experiences of young adult cancer survivors”.

What does participation involve?

Semi-structured interviews lasting approximately 1 hour each. You can disclose as much or as little information as you would like.

Inclusion criteria?

Aged 18 - 40 years old
Cancer diagnosis between 15 and 29 years old
At least two years in remission at time of investigation
From Australia, UK, or US
Able to read, write and speak English.

Who will the study benefit?

It is expected that the research findings of this project will not benefit you directly; however you may enjoy the opportunity to talk about your experiences.

The knowledge gained from this research may be used to develop supportive care programs which will benefit other young cancer survivors in the future.

If you are interested in being involved, please contact Danielle Tindle at d.tindle@qut.edu.au or phone +61 7 3138 0031.

When things get tough...

Mon, 21 Nov 2011 22:21:1321914060 GMT

There is no denying it. Cancer is tough, regardless of who in the family has it. Guest blogger Toni Lindsay talks about managing when things are tough.

It is like a pebble in a stream that impacts everyone that it comes in contact with. Particularly if you are one of the people in the direct line of the waves.

Today’s blog is about revisiting some of those strategies which have been helpful for you in the past. We all have strategies that help us manage our way through the world, and for most people there will be some times (even before cancer) that you would have been in a tough spot and had to work out a way to manage it.

Having cancer enter your world is obviously a completely different ballpark, but some of the things which helped you before can still be helpful now.

One of the problems is that when cancer appears, almost everything goes by the wayside. Including the old trusty coping strategies which you have had, and used in the past….So I thought it might be helpful to look at some of the things which people find helpful when times are tough!

Write stuff down. This can be in a journal, a blog, a scrap piece of paper. The thing that is helpful about writing down what’s on your mind is that it gets it out of your head. Even if you never read it again, it helps you to think about things differently.
Talk it out! Just like writing, talking about things take them out of your head and force your mind to think about it differently. It doesn’t matter whether you talk to your friends, family or even the dog. It helps to just to hear yourself saying what the problems are and how you feel.
Get some exercise. The worst thing that you can do for your mind is to sit and think constantly. Getting some exercise restarts your mind, gives you extra energy and gives you the good chemicals in your brain. It also gives you some time out of the house, and away from the stuff your worried about.
Play your favourite song. We all have one. That song that makes you want to just jump up, or sing loudly (and in my case very out of tune) and usually makes you feel much better.
Take some time just for you. Its an ok time to feel selfish right now. If you like taking long baths, take a long bath. If you like playing your guitar, play your guitar (are you picking up where I am going with this?). The things which will make the cancer experience more manageable is being able to do the stuff which makes you feel good. Do this at least once per day!
Ask questions. The thing which generally helps if you are feeling really anxious about something is to get some answers. In cancer world, sometimes it’s hard to get those answers, but if you don’t ask then you definitely won’t get them! It’s ok to want to know what a certain test means, or whether the news you have gotten is good, bad, or really bad. If you can’t ask your doctors, think about the other people who may be able to help you out.

I hope these remind you of some of the things that you can already do well!

What are some of the strategies which you guys have found helpful?

Cancer making you crazy?

Sun, 06 Nov 2011 22:47:1320619620 GMT

Our guest blogger this week is clinical psychologist Toni Lindsay.

When cancer enters your world, it generally means things are about to get tossed about, turned upside down, and may not return to ‘normal’. No one wants this to happen (obviously!!!) and more often then not, people don’t have a sense of what the true impact of having cancer in your world will be.

So, its not uncommon for people to come into see me and ask “Am I crazy?”

When the cancer diagnosis comes, either for yourself or someone else in your world, the normal emotional experiences that you have get completely blown out of the water, and your brain needs to readjust to what it means to have cancer around.

In my years of working with young people living with cancer, for the most part everyone will cope with the ‘cancer stuff’ differently. For some people their automatic response is to hibernate away and not tell anyone, and for other people they may tell everyone. Some people feel angry, some feel sad, some feel cheated, some feel scared and so on.

The tricky thing about this situation is that there is no way of knowing how you are going to feel until it happens. And for most people there is no road sign which tells them that cancer is about to come onboard.

Generally, people feel that their brain turns to soup as soon as ‘cancer’ happens, there are a million thoughts running around in there, and the really simple things get really complicated. That’s normal. The cancer news sparks the part of your brain which turns on ‘worst case scenario’ and the ‘I can’t cope with this’ centres. While this is happening, your brain finds it really hard to focus on anything else.

The other side of the coin is when people instead feel completely numb and disconnected from everything. This is also normal. For both of these, things generally settle down a bit when you get some more answers, like starting treatment, an understanding of what it means, and some kind of sense of routine or normality. Even chemo helps your sense of coping, because it means that there is a plan, something is being done.

Our brains don’t like not having a plan, and any sense of routine or structure helps a lot! So…what to do with this stuff? Firstly, it’s ok to feel like your emotions are out of control for a little bit, this is a situation completely outside of the normal stuff that you would be used to dealing with, and it takes some time to work out how to cope with that.

Secondly, like anything, as you have some time to think and process things, it will probably get a bit easier (not really easy, but a little easier).

My top tips for helping to deal with a diagnosis of cancer (for you, or someone in your family)

Keep your life as ‘normal’ as possible, like still going out with friends (even though you may not feel like it), it gives you a bit of a break from some of the cancer stuff.
Try and be a bit busy…it’s ok to have time to think about the cancer stuff, but if that’s all you are thinking about it, the cancer stuff will probably feel even bigger than it already is.
If you have questions or worries about the cancer stuff, write them down and ask the Doctors. There may be a very simple explanation for the question you have which is causing you to worry. The Doctors might look busy (and they probably are) but its important that you have the answers for anything you ask, so make sure you get them!
Do something everyday which makes you feel good! Anything from taking a bath, to listening to your favourite song, at this time its really important to find the little things which can make your world a better place!

Remember, if you are finding it hard to manage, or would like to talk to someone, there will be a counsellor at the hospital, at school, at headspace, at your local Community Health Centre, so the help is there for you!