Thursday, December 30, 2010
Monday, December 13, 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
Tuesday, December 7, 2010
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.
(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.