I want my hair back.

With my wedding coming up in a few months, I am so ridiculously obsessed with my hair (or lack thereof). I desperately want it to grow faster, but in reality there is no way it can grow fast enough. I’m at the point where I’m obsessively checking the growth nearly everyday. I’m being totally irrational about it.

I’ve been investigating hair extensions, but the problem is that the front, top and sides aren’t long enough to cover the joins. I found a place in Sydney that fuses on the hair strand by strand, so there are no visible joins. However it costs $5000. I might be totally obsessed and quite irrational, but I’m still sane enough to know that is ridiculous!

During my treatment, I felt nausea, pain and extreme exhaustion. I now face a constant anxiety that the cancer will come back. Yet, I am stupidly so concerned about my hair. It feels like such a shallow thing to be worried about. While I was having treatment, hair loss was a tangible sign that I was sick. For me, it was a constant reminder that I was having chemo, that it all really was happening to me. Walking around bald in public wearing a headscarf was like wearing a flashing neon sign declaring, “I have cancer, please stare at me”.

Now that my treatment is over, I’m supposed to be getting back to ‘normal’. However, my hair is a constant reminder of what I’ve been through. To me, my short hair is symbolic of my cancer. I hate the thought of looking at wedding photos for the rest of my life knowing that the first thing I will see is cancer.

I know that I am not my hair. I know that I will still look great on my wedding day with short hair. I know that it is incredibly vain of me to care about such a superficial thing. Yet none of this knowledge stops me from wanting to cry every time I think about my hair.

Furthermore, I feel so incredibly guilty for feeling this way. I’m healthy, I beat cancer. Why do I care about my hair? When I first lost my hair I said that I’d chop my arms off if it meant I’d be rid of the cancer, and lots of people actually do lose organs or limbs due to their cancer. Many people lose their lives. I’m so angry at myself for caring so much about this.

I know I have to just deal with it. I know there is nothing I can do to change it, but really it’s just another reason why cancer is so shit.

A lot can happen in a year.

It has been one year today since I received my lymphoma diagnosis. I have to admit I've felt a little shaken all day. It's a mixed feeling to be moving away from my diagnosis and treatment. Obviously I am so happy to be moving away from it, but that doesn't mean the experience is really being put behind me.

During my treatment I had obvious physical pain and understandable emotional pain. Now that it's over, I've got to go back to living my life, even though I still feel so much of that pain. I'm still so tired and really just feel drained. I don't want to stop and think about my emotions, because when I do my memories of the battle and the fear of it coming back are too intense. All I want to do is forget, but I know I never will.

Having said that, when I remember where I was a year ago and the intense fear I felt then, I know I have come a long way. Although 2010 has been an awful year, I'm a different person because of it.

From this experience I know that there are a lot of really great people in this world. People that I couldn't have gotten through this year without. This encompasses my closest family and friends, total strangers, acquaintances, and some wonderful new friends I made through my illness. These wonderful people are there to support, encourage and love.

I really cannot thank people more for what they have done for me this year. Whether it was emotional support, friendship, coming with me to appointments, cooking us dinner, doing my yard duty, contributing to cancer fundraising, leaving me a heartwarming comment on this blog, or even just asking me how I was, I really could not have got through this journey without you. You helped to save my life.

Mikayla Emily Francis 27/11/2003- 13/12/2010

As I finished treatment and received the news of being cancer free a few months ago, the hardest part of my cancer journey came to end. Sadly, the journey began for a family at my school. Mikayla Francis, a 6 year old student, was diagnosed with hepatoblastoma, a rare liver cancer.

This news rocked the community and I think that many students just assumed she would receive treatment and be back at school in a few months (particularly after seeing my situation). Even after the horrific confirmation of her treatment being unsuccessful, their innocent confidence in her recovery was heartbreaking.

As adults we look on wondering why, struggling with helplessness and the uncomfortable feeling of guilt we have about being glad it’s not someone in our family. In my case, realising how easily that could be me.

I remember Andrew, Mikayla’s Dad, saying that when telling her that she was going to die, she asked why they couldn’t just mix up another chemo. How do we tell children that the doctors they have faith in to fix everything, don’t have all the answers?

I really feel for oncologists, in particular paediatric oncologists. How do they bear the pain of losing patients? The pain of trying everything they have at their disposal and nothing works. It must take so much strength to go back to work each day not knowing which way things will go for your patient. You could save their life or you could be rendered helpless.

Cancer medicine has made great progress and has bought joy to many patients like me. Sadly, it hasn’t progressed enough. A story like Mikayla’s brings home the importance of appreciating those that devote their time to cancer research. We all need to donate generously to the hard work of these people, as it is this patient, persistent and often unrecognised work that will in the future allow oncologists to be able to save every life.

Mikayla’s journey did not have the right ending, but I hope there are things we can all learn from it. To appreciate all we have, to give us the ability to put things into perspective and to treasure every moment with have with our family and friends.

Everyone that has seen Mikayla’s story can see her strength, courage and bravery. For those of us that knew Mikayla, we can vouch for her beautiful nature. She was a kind, supportive and fun person, a wonderful friend to all. We will always remember the cute, squeaky little voice that never stopped chatting.

Mikayla, you are an absolute inspiration to us all. I feel so proud to have had the pleasure of knowing such a wonderful person. There will be a new star shining brightly in the sky tonight.

Rest in peace beautiful girl. xx

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.

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.

Remission Possible Website

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.