One Year Cancer free!

A month or so ago I had a scan and the world's worst blood test. As you will have read I'm absolutely terrified of needles, so I therefore hate the blood tests. This time the needle was faulty and the whole thing fell apart in my arm. The nurse was digging around in there for what felt like forever, while I was crying my eyes out and yelling at her to hurry up and get it out of my arm. Once it was out and I had calmed down she had to try again in the other arm. I know the fear is totally irrational, but I just can't deal with it, and situations like this just make it so much worse!

Anyway, I was meant to go to my oncologist a few days later for a check up and to get my results, but I got a phone all from the clinic saying he was stuck in Tasmania due to the Chilean volcano ash cloud, and couldn't get back to Melbourne. So my appointment was postponed. Then after a few other delays I finally got my results…cancer free!

It’s quite funny that I get so worried about the checkups and then when I get there it’s such a relaxed and laid back encounter. I walk in and sit down, my oncologist tells me my blood tests/scan was fine, he feels around for lumps, listens to my chest and then I leave. Easy. Then I spend the next three months worrying again!

So I’m not really sure how you’re supposed to measure this type of thing. My treatment finished on the 15^th of June last year, but the PET scan that officially showed that I was cancer free wasn’t until the 5^th of August. Either way, I’m now more than a year in remission!

Moving on has been a challenge in many ways. Physically I am only just starting to get my energy back. I still feel constantly tired and achy, but lately it’s on the improve. I still don’t have feeling in my finger tips and I have very little saliva, but I don’t have cancer, so who cares about those things?!!!

I think this next year will in a lot of ways be a year of reflection. I already notice myself thinking a lot of the time “a year ago today I was ...”. In some ways it seems like it only just happened, in other ways it seems like it’s been forever. Some things feel like they never happened to me. Perhaps it was all just a really bad dream that I can just forget ever happened.

I’m having a bit of a tough time lately thinking about others who aren’t so lucky. I know that there’s such thing as Survivor Guilt, but I’m not sure if that’s the right way to describe how I feel. It’s an incredibly strange concept. Obviously I’m so grateful be here, but I’m so angry for those that lose their fight to this terrible illness. It’s so unfair and is just another reason I’m so angry at cancer.

One year out, once again I need to thank everyone close to me. Without my friends, family, colleagues, students and www.cancerforums.net friends, there is no way I would cope with any of the things I’m faced with. I love and appreciate you all very much.

Finally, since beginning this blog, I have 11,500 page views. I have received such great feedback from other lymphoma sufferers about how helpful they have found it to read my journey, and that makes me so happy. It’s a pleasure to know that my experience can help others facing the same problem.

Cancer Research

I've been thinking lately about what motivates people to give to charities. Are our motivations altruistic or do we do it just to make ourselves feel good? I suppose it doesn't matter why people do it, just that they do!

Conversely why do some people not give? I know some people say they don’t donate because the charities spend too much on themselves. How do people expect them to run without staff or administration? Others believe they don’t have enough money to give. I believe that the majority of people can afford to, they just choose to spend the money elsewhere.

I’ve always been someone that donates. I see natural disasters on TV and the devastation pulls at my heartstrings. People knock on my door and I feel that I should reward them for giving their time to collect. I have lost people close to me to cancer so I always buy merchandise from the Cancer Council. Like many people I choose which charities I will make a larger donation to, but generally if any charity asks I will give at least a few dollars.

Since having cancer my passion for fundraising has really intensified. I have experienced the amazing support services offered by cancer charities and without donations these services would not exist. Furthermore, without donations to cancer research the amazing treatments that are around today would not have been developed.

I live in constant fear of my lymphoma returning. There is nothing I can do to stop this from happening, but I can support research that will help to cure it if it does come back.

I now have a regular donation to the Australian Cancer Research Foundation debited from my account each month, I have participated in World’s Greatest Shave, Light the Night and Relay for Life. I am participating in Relay for Life again this year (click here to donate or join our team).

Without cancer research I would not be alive. I only hope that my donations can help others to say the same thing.

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.