This is a strange story for me to write. It will at times be a sad story, in many ways it will be happy and perhaps even funny. It will be an adventure that entails anxiety, flirting with danger, fortitude in the face of adversity and many attempts to look on the bright side. There will also no doubt be moments of anguish and despair, and a lot of uncertainty. It's a story that will hopefully be cathartic for me, but also interesting and perhaps informative or even entertaining for others.

Tuesday, December 7, 2010

What Not to Say to a Cancer Patient

Cancer patients and survivors deal with many comments made by people with good intentions, but they are often quite hurtful or insensitive. Sometimes these comments are due to the person’s own discomfort and lack of knowing the right thing to say. I understand that.

However, as the receiver of many comments that I would rather not have heard, I have decided to put together the following list of things not to sat to a cancer patient./survivor

§ “Everything will be ok”

(Similar to “don’t stress about it”, “I’m sure the tests will be fine” etc)

You don’t have any way of knowing this so it’s best not to say it. It almost dismisses the reality of facing death.

§ “At least they caught it early”

While this is often a good thing in terms of prognosis, like the above comment this trivialises the serious of having cancer and that no matter how far it has progressed, it is still a deadly disease.

§ “Stay Positive” or “At least you’re being positive”

People regularly told me about all the studies they had read about how a positive attitude helped someone survive cancer. I don’t doubt that being positive is helpful, but it’s not always possible. Therefore, no-one should ever tell us to stay positive. We have cancer, we will not be positive all the time. We are upset, angry, anxious, scared, tired, panicked, in denial etc. We have a right to feel all these things and not always feel positive, without people making us feel like we’re jeopordising our chances of recovery.

§ “Great, your chemo is over. You must feel wonderful”

I think the reality is that it’s quite scary when your treatment is over. While you’re being treated you feel ‘safe’. When it’s over its like you’re on your own, and in some sense it’s like you’re just waiting for the cancer to come back.

Additionally, for a long time after treatment you feel like crap. There are a huge amount of lingering effects (physical and emotional) that don’t go away when the chemo does.

§ “I’m having such a bad hair day”

(“At least you look good bald” or basically any comment about hair!)

This is a very sensitive topic for many cancer patients, particularly women. Hearing other people whinge about their hair being dry or frizzy or not liking the new colour they got is heart-breaking. I hated losing my long hair and felt so ugly and unfeminine without hair. I would have done anything to keep my hair, no matter how dry or frizzy it was. Someone making comments such as these is just plain insensitive.

§ “If there’s anything I can do…”

Don’t ever offer your help or support unless you have every intention of doing something if you’re asked. The reality is that this is just something that comes to people’s minds as the right thing to say. Don’t say it unless you intend to keep your word. Even if they don’t ask for help, think of something and do it. Send flowers, mow their lawn, bring them dinner. Anything that makes them feel loved and will ease the burden for them.

§ “It’s just a bump in the road, you’ll get through it”

I can swerve and avoid a bump in the road, I couldn’t avoid my lymphoma. The living hell that is cancer and its treatment, is much larger than a bump in the road.

§ Don’t talk about someone you know that died of cancer. Don’t talk about death at all.

§ Don’t talk about the alternative medicine you heard of through a friend of a friend that knows someone who beat cancer without treatment. Don’t tell me I got cancer from drinking tap water, or because human’s shouldn’t drink cows milk. It doesn’t help.

§ Last but probably most important, don’t ignore them.

Don’t avoid me at social gatherings because you don’t know what to say, don’t pretend you didn’t see me, don’t stop calling me because it’s awkward. Imagine how tough it is for me and you’re worried about it being uncomfortable. This makes me really quite angry, but even more so it’s incredibly disappointing. Just ask how I’m going.

Appreciating Christmas

It's the beginning of the festive season and I'm really looking forward to Christmas. I've always loved Christmas for many reasons (fun times with family, gift giving and lots of yummy food and wine), but this year I'm appreciating it a whole lot more.

I put up my Christmas tree the other day and had distinct memories of the same experience a year ago. Last year I spent the whole time thinking it may be the last time I get to decorate the tree. I also remember trying to really appreciate my birthday and Christmas Day, as I was so scared they would be last.

Thanks to amazing doctors and medical researchers (and all those that donate to cancer research) I am here to experience all these things again this year and many more times in the future.

It's my birthday next week and I'm really looking forward to appreciating time with my family and friends because I love them and want to have fun with them, without worrying it will be the last time. I'm so glad I can do that.

Monday, October 25, 2010

Remission Possible

Remission Possible: 1 million people raising 1 million dollars to make cancer history.

So many people are touched by this awful thing called cancer. Raising funds to find a cure is such an important thing.

Please visit this website and donate now to support these amazing young Australian cancer survivors that are climbing Mt Everest. All money raised goes to the Australian Cancer Research Foundation.

$1 does go a long way.

Tuesday, September 21, 2010

Miracle of Modern Medicine

Lately I’ve been thinking about the brilliance of modern medicine and how lucky I am to live in a time where doctors know so much about cancers and how to treat them.

I read somewhere that in terms of progression in radiation treatments for lymphoma, a long time ago is 2 years. If they can make such advancement in two years, there is a lot of hope for what the future brings. In terms of my chemotherapy treatment, the recent addition of Rituximab to the regime, significantly increases the chance of full remission in patients of all ages. I feel so lucky that this discovery was made.

With the knowledge and skills that doctors have how can people choose not have any treatment? I have read of so many people choosing alternative treatments for lymphoma or choosing not to have any treatment at all. Even worse, there are parents that don’t let their children have treatment.

I know I have no right to question people’s beliefs or their right to refuse medical treatment, but I think we need to put our trust in the people that have science behind them, rather than miracle cures.

I think maybe for a lot of people the fear of chemotherapy comes from the image we have in our minds of what a cancer patient looks like. The cancer itself has a huge physical effect on the patient, and the severity of the chemo only makes this worse. To the average person, it seems as though it is the chemo that is making the patient sicker than the cancer. Furthermore, sadly many people die and the association between chemotherapy and death is imprinted in our minds.

This association is something the alternative cancer cure advocates play on when they offer natural medicines that apparently cure cancer without any suffering. I’m sure we’ve all seen the promotion of medicines as absurd as Cancer no More pills or the plethora of internet ‘testimonials’ about a friend of a friend that knows someone who cured their cancer through a diet of asparagus and regular indigenous dancing. As ridiculous as they sound, to many people these things are more appealing than chemotherapy or radiation.

A fear of chemotherapy and radiation are totally understandable. Chemo is poison that destroys cells (normal cells in addition to cancer cells) and radiation burns these cells. However this is why they work, they both destroy cancer cells more than they destroy regular cells. Believe me, I know how awful these treatments are. From the chemo I was sick, tired, I lost feeling in my fingers, my hair fell out and my nails were constantly breaking. From the radiation my skin was burnt, bright red and eventually peeled off.

But without these treatments I wouldn’t be here. No question about it. Because these treatments destroy cells I’m still alive.

Nine months ago I had a tumour in my chest that took up the space where my lungs were supposed to be and was squashing my heart. It measured 10 x 7cm. There was another near my collarbone that measured 5 x 2cm and several more smaller ones in my chest and abdomen.

The lump in my chest had been causing a lot of pain and I was having great difficulty breathing. I couldn’t sleep because lying down was excruciating because of the tumour.

Within a week of my first chemotherapy treatment I could breathe again and I could lie down without the stabbing pains. The side effects of the chemo were already worth it. Now after the entire course of chemo and then the radiation as well all of those tumours are gone. The only miracle for me was that I was lucky enough to have these amazing treatments available to me.

I’m so grateful to science, medicine and knowledgeable doctors. Without them I wouldn’t be here to write this.

Monday, September 20, 2010

A Recommendation for My Blog!

The Lymphoma Information Network have written a recommendation for my blog!

Thank you to the Network for their lovely review and for the fantastic information available on their site.

Light the Night

On Wednesday night I participated in Light the Night with a group of my wonderful friends and family. To attend this night and carry a white balloon was amazing. To have so many people come with me to show their support was even more incredible.

Blood cancer is the second largest cause of cancer death in Australia, and Lymphoma is the most common blood cancer, yet prevention is not possible, as the cause is unknown.

This event is an inspiring way to raise awareness of blood cancers, but also to raise funds for care and hopefully for cure.

It was amazing to walk amongst the sea of balloons and I’m so glad I went. I’ll definitely be there again next year.

Sunday, September 12, 2010

Slow Dance

I found a beautiful poem about appreciating life. I think we all need to remember to stop and smell the roses, but I think someone that has been faced with death really understands this.

SLOW DANCE By David L Weatherford

Have you ever watched kids on a merry-go-round,
or listened to rain slapping the ground?

Ever followed a butterfly's erratic flight,
or gazed at the sun fading into the night?

You better slow down, don't dance so fast,
time is short, the music won't last.

Do you run through each day on the fly,
when you ask "How are you?", do you hear the reply?

When the day is done, do you lie in your bed,
with the next hundred chores running through your head?

You better slow down, don't dance so fast,
time is short, the music won't last.


Ever told your child, we'll do it tomorrow,
and in your haste, not see his sorrow?

Ever lost touch, let a friendship die,
'cause you never had time to call and say hi?

You better slow down, don't dance so fast,
time is short, the music won't last.


When you run so fast to get somewhere,
you miss half the fun of getting there.

When you worry and hurry through your day,
it's like an unopened gift thrown away.

Life isn't a race, so take it slower,
hear the music before your song is over.