Not all butterflies and rainbows.

Last week, I was out walking with my mother. It had been raining heavily, and we came across this beautiful heart-shaped puddle of muddy water. As cheesy as it might sound, I considered it a sign that love is all around us, everywhere, if we just keep our eyes open and choose to see it.

While walking, my mom asked how I felt about my decision to share the fact that I'm sick, with acquaintances as well as strangers. I told her that I couldn't really see that I had an option. Ever since I started blogging, and then, later, writing columns about my life for newspapers and magazines, I've been almost awkwardly open about many of those things others would consider "private". I'm so used to sharing my innermost thoughts with anyone who cares to read about them - how could I possibly stop now? No, I told my mom, I'm definitely sure I did the right thing by telling.

Being diagnosed with cancer is obviously nothing to be ashamed of, and if even just one woman reads about what's happened to me and thinks "maybe I should schedule an appointment for a pap smear screening", it's all worth it.

If I had decided to keep my disease quiet, not only would I have been deprived of the amazing emotional outlet this blog provides, but also of the massive amount of love and support I have received from all of you. And one ought not to underestimate the power of healing, caring thoughts being sent one's way.

But, as with most big decisions, it's not all rainbows and butterflies to sharing something as sensitive as a cancer diagnosis. I'm terribly fragile in many ways, and consequently I react strongly to things which never would have bothered me before. This means that some comments and e-mail, though clearly 100% well-meaning and meant to cheer me up, sometimes manage to acquire the opposite. The content of these comments and letters can be devided into three different categories, and since I'm apparently all about sharing, I will also share these with you. Many of you who read this blog will have left me comments or e-mailed me saying things similar to what I'm about to write, and I will say right now: I do appareciate your care and support, so much. I really, really do. It's nothing personal against you whatsoever, and I would probably have done the exact same thing. I couldn't have guessed, myself, how I would feel about this. Everyone reacts differently.

What I'm having trouble with (while feeling particularly down):

1. The recommendations of alternative treatment methods as opposed to traditional medicine.

I simply feel that telling a person who suffers from cancer not to accept scientific medical treatment is dangerous. Of course there are many opinions about how to treat diseases, and everyone is entitled to their own, but I personally do not believe that healing, changing my diet or any other non-traditional method is going to work better than what my doctors can do for me. After being told twenty times absolutely not to trust my doctors, I've started feeling a bit uneasy. I need to trust my doctors. You know? I need to fully believe, to have complete faith, that they have the ability to save my life. In other words, I wish everyone else would have faith in my doctors as well, and not tell me they shouldn't be trusted.


2. The "mind over body" idea. 

I do think that having a positive outlook is of immense help to a sick person. I do believe that a doctor telling you she's given you medicine for your pain can make it hurt less, thanks to the placebo effect. But I do not believe looking at the bright side of life (insert whistle here) can cure cancer.

People encouraging me to try and stay positive, to focus on the good thoughts as intently as possible, I truly appreciate that. Unfortunately I'm not very successful at it, constantly drifting off to those horrifying "what ifs", but in theory I fully support the idea that a positive attitude will help you through hard times. The problem arises whenever I'm told that if I really want it, I'm going to make it. That it's all in the attitude. That if I only have faith, I will live.

It's not all in the attitude. It's not about who wants it the most. Trust me, I know. If it were true, my best friend Fanny would be at my bedside right now, holding my hand, helping me through this just as I tried with all my might to help her.

Fanny was the strongest, most determined person I've ever met. She was clear right from the start: she was not giving up. She was not, not, not going to die. She would fight, and she would win. She had faith, she had hope, she had such unbelievable strength. She believed in miracles. When the doctors told her there was nothing more they could do, that they wanted to stop her treatments to make her more comfortable, she told them, without the slightest bit of hesitation, to keep going. When they told her there was nothing more to try, she told them to keep looking.

She bought new, warm boots in September, because she knew we were going to take long walks together that winter, and who wants cold feet?

We laughed for hours, every time we were together. We talked about everything, the normal things, things that might not matter to someone who's about to die, but that are of great importance to someone with a long, happy life ahead of her.

She did everything right. And she didn't make it. On September 21st, last year, she died. She was so incredibly brave, so wondrously loved, and in the end, it didn't make a difference.

So please, please, don't tell me I will make it if I want it enough. The loved ones we lose don't leave us because they're not thinking the right thoughts.

But - you're right, a positive attitude is important. Maybe even essential. Because I am sure that the will to live can keep someone alive longer than she otherwise would have, and with every passing day, there are new discoveries in the medical research. Tomorrow, there could be a cure. All anyone can do is their very best to live through the night. And then the next.

Just remember that if the people you love don't live to see that cure, it's not because they didn't want to.


3. The "I've been there" from those who haven't. 

When you go to a gynaecologist and have a pap test ("cellprov" in Swedish) - which you should do regularly: it takes five minutes, is painless and it can save your life - you might get a letter sent home telling you that they have found pre-cancerous changes ("cellförändringar" in Swedish). They will then ask you to come back for a second test, a colposcopy, to decide if anything else needs to be done. Many of these pre-cancerous changes simply disappear by themselves, other need to be removed by a simple surgery, a conization.

All of this is very, very scary. No doubt about that. But it does not mean that you have cancer. In Sweden, 30 000 women every year are told that they have these pre-cancerous changes. Actually, it's so common that you will probably get them, too, at some point in your life. (That's why you need to make sure to do these pap smear screenings!) Out of these 30 000 Swedish women, around 400 get diagnosed with cervical cancer. In other words: less than 1,5%. (Not of all women, of those with these pre-cancerous changes.) If it turns out you do have them, with 98,5% certainty, you are still perfectly fine, and you have every reason to be grateful that they were found before they had the chance of turning into something else.

And still, you're scared. Because there is a 1,5% risk you might have cancer. Then you find out that you don't, but that you should be careful and never miss a pap smear, since they could come back.

Or maybe, maybe you turn out to be in the not-so-lucky group. Maybe you're told that you do have a tumour, that you won't be able to have kids, that you will go through extremely challenging treatments, that you might die. Five years after they've been diagnosed with cervical cancer, one out of three is dead from her disease. The more advanced the tumour is, the less uplifting these number become.

I'm obviously new to all this. But I've received lots of support from women who have already been through it all, and made it out on the other side. They might still be afraid of what the next test will show, but they are alive. Hearing from these women means so much to me, I can't even begin to describe it.

I also hear from a huge amount of girls and women who have been told that they have these pre-cancerous changes, and who are very upset about what's happened to me. I try to tell them that for them, it will most likely - 98,5%, remember? - turn out to be nothing, and that it's great that these changes has been found and can be removed or closely watched.

But. Then there are the women who have, or have had, these pre-cancerous changes. Who tell me that they know exactly how I feel right now, that sure, it was scary and hard for them as well, but they're fine today, and I will be, too. This brings out a part of myself that I'm not at all proud of. A voice inside my head starts screaming: "no, no, no, you don't! You don't know how I feel, because it's not the same!". I know this is childish, I know they all mean so well, but I can't help it. Because it isn't the same. Not even a little bit. Which is good - I'm glad these women don't have to feel the way I do. I'm glad noone has told them that they have cancer, that their lives will change forever.

The truth is, we can never know exactly how someone else feels. And that's okay. We just shouldn't claim to, either.


I sincerely hope noone feels offended by this post. That was never my intention. This is simply how I feel, and since this blog is supposed to be an outlet to my feelings, I had to write it.

And everyone who comments and sends me e-mail: THANK YOU. From the bottom of my heart, thank you, thank you, thank you. I might not think positive energy makes the final difference between life and death, but it sure makes my chest swell with pride and joy, and the days a lot easier to get through. You are all wonderful.







A quick update: Please don't read this post and try to figure out if maybe I'm referring to your specfic comments! I feel oh so guilty when you do! This honestly isn't anything personal against any one person or even any particular message. You should absolutely not apologize. Showing support and compassion to someone who needs it is always a beautiful thing. But, a lot of people have told me that they don't know what to say to me about this whole situation, and since I believe that's a very common problem - one that I, myself, have trouble with when it comes to others - perhaps it could be interesting for us to reflect on. And I would rather share my opinion now, than maybe fail to appreciate your amazing support in the future, wishing I should have spoke my mind earlier. I love you and I cherish each comment dearly.