Just Another Hiccup? Perhaps.

I've lived through few weeks filled with horrid pain, yet again. And last week there was a little bit of history repeating...
Honestly, I wish it wasn't.
All I want is to be well. My greatest wish of all is to wake up one morning, open my eyes and while assessing my well being while still in bed, realizing my body has no aches, no pains, feeling well and strong and healthy. Get out of bed with no physical effort, light footed, and walk out of the bedroom well balanced, light and full of life.
Just, simply, to wake up feeling well.

I used to see myself being physically well all the time, even over the past year since living with cancer. But my vision is getting a bit blurry at the moment. And I must confess that my strong attitude has been weakened after the last, yet another unpleasant incident of waking up in agony and almost being unable to move. Yet again I had to call palliative care unit while still in bed, my GP and my radio oncologist. And yet again I was adviced to get an ambulance to take me to emergency ...
Honestly, it absolutely sucks.
All I want is to be well. Is that too much to ask?

It's been about 18 months on this journey now. And wow, what a journey!
I am mostly pleased with my life, I must say. I don't really have regrets. I appreciate all the lifestyle changes I have made. And all the changes in me that have taken place. I appreciate them all and I wouldn't change it for anything.
I definitely am a much better person, with way more peace and contentment, clarity, empathy, ...
But I am getting tired. So tired. Tired of being physically unwell. Tired of feeling the way I used to imagine to be feeling when I'm in my 80s and not at my age. Tired of bouncing moods caused by all the drugs I'm on... They just don't fit into my new found 'organic' lifestyle.
I know many things I'm going through emotionally at the moment are caused purely by drugs, but that doesn't really matter. What matters is the way I feel. And I don't feel right at the moment. I am in this moment, yes, and there are many things I greatly appreciate, but I can not ignore the ones I greatly dislike. There are just a few too many.

I often think of my beautiful daughter. She is only 5 years old. So young, but yet so in tune with what is going on. Every time she puts on her 5 year old behavior and if I am unwell or I let her know I'm in pain, she changes her act straight away. Instead, she runs to me, gives me a huge, honest hug, cuddles me and kisses me and says: mummy I love you. Or: oh mummy, I wish you were well already...
She is so precious, and she is the main reason and my main motivation to keep going and to pull out the whatever strength there is left somewhere inside of me, even when there's a moment when I am running on empty.

How about you? Who is your main motivation?

"That which does not kill us makes us stronger"

We are all familiar with the above quote by Friedrich Nietzsche.
Yes, we all kind of believe that, don't we? Well, at least I do. The quote itself makes me feel pretty good about myself. Thinking through the words, makes me feel more at ease travelling through challenges of life. And the word 'stronger' makes me feel powerful...

But yet on occasion, I think to myself: 'What the...?'
How strong do some of us have to be? How strong will I be by the end of my life? What if I'm now content as I am, strong enough, that's it, finished, all done and dusted... ?!?! I need no more!

Unfortunately life doesn't work that way. There is no remote control to press 'pause', not even for a moment. Or perhaps there is, and that 'pause' button is actually the 'mindfulness meditation'? The time we take to just sit still for half an hour or so and do absolutely nothing. Pause. In the present moment. Completely in the now. Nowhere else. 
At some points over the past year, I have found myself in that present, peaceful state quite often. It feels so amazing it's addictive.
But yet, more often than not, I find myself stuck in my busy state of mind, caught up in thoughts and with the new learned belief of 'embracing' it all, find myself slightly stressed out when something unpleasant happens and I can't really embrace it. It might make me stronger, yes, but it doesn't mean I have to embrace it.

Today, while talking to my counsellor (I should really call her my mentor instead), I realised I have been putting too much pressure on myself for trying to embrace every single moment of my life. 'Embracing' is a very powerful word and although positive, it can easily turn into negative if you find it difficult to embrace a particular situation that happens. It can cause quite a bit of stress when you are not honest with your emotions towards the circumstance. At least in my case.
I realised earlier today, I don't want to embrace unpleasant things anymore. I am accepting them though. In fact, I've learned to accept everything that came my way so far.
From now on, rather than embracing, I will just BE with it. Be, with whatever comes my way, good, bad, nice, sad, happy, exciting, horrible, annoying, irritating, or whatever else there is...

So back to the quote by Friedrich Nietzsche. Yes, great, I am strong, because I am still alive after numerous challenges of my life that could have killed me. But, how strong do I really need to become? Or better, how strong do I want to be? What if I feel I am now strong enough? Can I ask life to stop throwing the 'life threatenning' challenges at me? Please?!?!

How about you? How strong are you?

Happy Birthday To Me

It was my birthday yesterday.
Celebrations have changed a lot since I've been living with cancer. Not only that my lifestyle and diet have changed (mostly vegan, sugar free, alcohol free... meaning no birthday cake nor birthday drinks), my mindset is different, too.
Looking few years back, I was quite devastated turning 30. I felt old, or perhaps, mature, an adult... I felt like I have hit the stage of life where there's no more excuses to be young and silly, but needing to get all serious about life, needing to know what I want, plan it all out - married, career, house by 34, kids by 36 etc
Little did I know....

After my first diagnosis and by the end of treatments, just a single thought of being 'trapped' in a mortgage almost made me sick. My motto has changed to 'I work to live' (definitely not live to work!). Life (to me) represented one holiday after another. Having one child seemed sufficient. I felt blessed not needing to plan bigger family and relieved not needing to feel 'guilty' to only have one child, since I had 'a good excuse'...
It's only now, 4 years later, that I catch myself thinking about why do I feel like I need an excuse? Or to explain myself to people I meet about:

• having only one child
• not owning a house
• not drinking
• not eating meat, dairy or sugar
• having thin hair...

What is my problem? Why do I let myself be influenced by  the 'silent rules of society', when, on the other hand, I claim not to care what other people think about me...
Yes, although I feel like I am in a good place, I feel obliged needing to explain to people, somehow justify my life, my actions and my decisions...Why?
Even after spending most of the past year soul searching, focusing on my mental and emotional healing and spiritual growth, there are still so many parts of me that need to be looked into. No matter how good, content and confident I feel, there are still many complex, slightly unpleasant feelings arising, that I am willing to explore.
There is so much more to learn about who I am, what is my place? What is it, truly, that makes me and keeps me in that 'good place'? In a place, where the superficial norms of society loose their meaning and have no attachments, where I confidently meet and communicate to everyone around me without feeling any pressures whatsoever. Move ligthly, think and make decisions with absolute clarity and act completely and only from the depth of my heart and soul, regardless of my health condition or any superficial barriers I may carry in my mind.

As I turned 39, I honestly don't feel the age nor do I care about it. In fact, in many ways, I feel exactly the same I felt when I was in my 20s. But yet things are very much different. I am different.
Have I achieved what I was meaning to by this age? No.
Have I ever thought I would have had cancer twice in my thirties? Of course not.
Have I ever thought I wasn't going to eat meat, or drink alcohol or not have a piece of cake, not even on my birthday? Absolutely not.
Do I have any regrets? Not a single one!

So, there we are. The unpredictability of the fragile life... The changes we, humans, can make. The actions we take are enormous. The strength we carry inside is unimaginable. Getting older, wiser, to mature and to be willing to change, is extremely empowering.

And as I felt devastated turning 30, I now feel totally blessed to be here to be able to turn 39 and looking forward to 40 and 50 and 60... and 70 and ... oh my oh my, there will be the biggest party on the planet earth when I turn 80 in 2053!
No middle age crisis here, no botox, no collagen injections planned, nor face lifts or plastic surgery... I am embracing every single moment of getting older, just because I am well enough to be able to!

How about you?

Mummy, what is cancer?

When I was first diagnosed with early breast cancer back in February 2008, my daughter wasn't even 1 year old. Obviously, she couldn't talk and I didn't feel the need to explain to her what was going on. The odds of survival were extremely high too. And my mum stayed with us for pretty much the whole treatment, so my little daughter did by no means feel left out on getting attention. She did, however, look at me strangely for few seconds, when I walked into her room with shaved head after my chemotherapy treatment side effects kicked in....
Almost 3 years on, in December 2010, when I was diagnosed again, all was different.
This time, it was secondary diagnosis. That, comparing to primary or early, is in itself much more serious. The secondary cancer means advanced, the one that has already spread (or metastasised) to other parts of the body. The odds for survival are much lower... In many cases so low, that people get prognosis of only few weeks to live. In my case is an average of 2-3 years. Well, luckily I am not the average person. I know I am extraordinary, as all the happenings over the past year have shown and confirmed and the way I feel right now (which according to statistics would make me either 1/2 or 1/3 dead), is nowhere near ... If anything, I feel at least 1/2 better than a year ago. On all levels, that is. And for me, the only way is up!
Anyhow, my daughter was nearly 4 years old at time of the secondary diagnosis, and by that age, kids know what's going on. They, in fact, know much more than we give them credits for.

So, how do we tell a child about cancer?
How do we explain what cancer is? Or, that there is a chance we may die way earlier than expected? Or, that we may get really sick before we get better and also that there is a chance we might not get better? And, we hear stories of people dying of cancer every day...

It was horrifying. For me, just the single thought of the possibility of me not being there for Olivia growing up was unimaginable. I can let go of absolutely anything in my life but her. She represents completely everything I've ever aspired to achieve. She is my very own masterpiece. A perfection. The biggest teacher I've known or had. Pretty much indescribable.
So how do I tell her what is going on?
I just couldn't, really. It took me few months, a few books, a 10 day cancer retreat and quite a few sessions with my counsellor to be able to talk to her about it.
And this is almost exact conversation we had:

"Olivia, I have to tell you something"
"Yes Mummy?"
"I am very very sick.... Even though I don't look like I am... but you know this back pain I've had for a long time, the one that makes me unable to lift you, and carry you and run around with you... It's a very serious illness. Many people die from it. But I am doing everything I can to get better. I am not going to die, not just yet, but if I do, I promise to tell you. You will be the first to know"
"So, Mummy, when I grow up, I won't need you anymore"
"Yes baby, do you want me to die then?"
"No, when you're old." She said with a smile on her face.
End of conversation.

Although I didn't mention the word cancer, I felt good to openly discuss the death. But I also felt overwhelmed by her response. She was not even 4 years old, but yet she's already created an image of parents being old before dying.
It did feel good to let it out though.

After that initial conversation, we had a few more through the year.
We spoke about death, but only if she started. She pretty much sensed the connection between old and dying and usually started talking about death when she watched a movie with someone dying or saw an old person.
She also often started the conversation with:
"So, my grandparents are old..." and I explained that sometimes people stay old for a very long time, being old doesn't necessary mean dying straight away. Sometimes young people die, too. Sometimes even babies.
One day in the car, when an old person was crossing the road, she again highlighted how that person may die soon. And again we went through the explanation, ended up with: the animals die, everybody dies, sometimes even kids or babies... And she said:
"Mummy, what if I die?"
"That would break my heart, baby. It would make me very sad"
"And if Daddy dies, I would be very sad." she responded.
"Of course you would be, darling. But you would be OK."
"If you die, that would make me very sad"
"Yes, baby, it would be sad, but you would still have Daddy to love you and look after you and many other people. Even if both, me and Daddy die, you have your 'Godparents' to look after you, be a part of new family, together with the two new sisters (*her nominated legal Guardians have two daughters, her best friends). You would be sad, of course, but you would be looked after, loved and taken care of"
"Yes, but I would miss you so much" she replied and I could see her thinking away a few moments still.
"Of course you would, darling..."
End of conversation.

On another occasion, quite a few months further down the track, she asked me:
"So, Mummy, how is this thing that you have called?"
"Oh, you mean this, what makes me sick?"
"Yes"
"It's cancer"
"Ah, cancer..."
"Why are you asking that? Did you hear anyone talking about it?"
"Yes"
"Who?"
"I'm not going to tell you"
End of conversation.
And so the 'cancer' word was out.
And my husband told me they had a conversation about my cancer while going for a walk. Olivia explained to him exactly what she understood my illness was. When they returned, we had a brief family conversation about it, all present, so Olivia knows there are no secrets. We are open to share and discuss with each other. No stigma attached.

On one occasion, after I was hospitalised a couple of times (after my brain surgery and after my collapsed vertebrae incident), she surprised me with the question:
"When are you not going to be sick anymore?"
That was hard.
How can I explain? So I explained (as I was just about to start chemotherapy) I might get even sicker before I get better, but set a hopeful goal of possibly feeling much better by the end of summer, after her Birthday.
It made me think. I wish I could set a date. I wish life with cancer had a defined positive deadline.

Another, to me, big issue was the hair loss. How is my daughter (whose hair is beautiful, lush, long and wavy and who idolises princesses and Barbie, and all story - book characters with super long hair), how is she going to handle her Mummy having no hair?
She took it simply. And as my hair is thinning and I complain about my 'bad hair days', she looks at me and tells me I look pretty anyway... Oh how I love her.
Even though she told me she didn't like the short wig and her obvious preference would be a lush long, princess-like one, when the 'no hair' stage occurs, I know she will accept me and show her love just the same.

I believe it is the most important to be 100% open, honest and discuss all of the awkward and unpleasant options that may occur in the future, regardless of having cancer. I want my daughter to know I am honest with her, no matter what. I want her to know she is loved and she will be loved, no matter what.
I understand that cancer has a horrible association with death attached to it and I know that she will (if she hasn't already) hear from kids at school things like: 'your Mummy has cancer, she will die'...
And when that happens, I want her to know what is really and truly going on, to be educated about the disease, about the progression and to know how to reply with confidence, to let her feelings and thoughts out clearly and to talk about it openly with myself and people around her.

Although there are moments I feel my now almost 5 year old daughter has had to grow up too fast because of my cancer, my advise to anyone talking to kids about any significant events of life wouldn't change: be open, be honest. Talk to kids, but only if or when they are open to a conversation. And be open to continue the conversation whenever they start it, because they do start it, even though it can happen at the most inconvenient place or time.
Kids are way too precious not to be 100% open to and honest with, and they are so incredibly intuitive, even if we think they don't know what's going on, believe me, they do! They know much more than we could ever possibly imagine....

How Are You Today?

I am sure we all loose count on how many times during one day we are asked the 'how are you'? Or how many times we ask someone.
From random people we bump into or somehow cross paths with (taxi / bus drivers, counter service at local cafe / shop...) or people closer to us such as our work colleagues, to people we love -our dear friends and loving family members.

It is not a big deal and it usually goes something like this:
'Hi, how are you?'
'Good, thanks, and you?'
We most commonly don't expect the answer or really care to hear it and reply, perhaps start the conversation... It is quite a superficial, but yet polite way of communicating in today's society.

Unfortunately (but sometimes fortunately) it all changes when you live affected by cancer.
Random superficial 'how are you's are sort of still the same.... Not a great deal. No expectations on the answer. But when it comes to people you know, they mostly really sincerely wish to know how you are. I am not sure why, but they ask 'how are you' in a different way. It is almost like they are realising that it generally doesn't mean much, but in our case, living with cancer, most people actually expect and wait to get the answer. If they haven't seen me in a while (like my work colleagues, business colleagues, brief friends etc), they ask that same question my partner: 'How is Tina?' over and over again. Some every day, others weekly... He gets quite tired answering and his usual answer is 'Good'

As for myself, it is not that simple. The simple answer 'Good' is just not enough.

Very early this year, soon after my secondary diagnosis, I have made a decision of being truly honest to myself in the way I feel. And once you are honest to yourself, you find it is quite complicated and simple 'good', 'not bad', 'not too good' etc just wouldn't do for an answer.

Living with my type of cancer, which is metastasised in the bones, is a painful experience. So automatically, you are never really good (basically never as good as I felt 18months ago when I was super fit and full of energy). At least not good in a physical sense.
There are days I feel horribly in pain and then there are days (like today) straight after acupuncture when the pain is minimal and the painkillers I am on actually are doing their job just fine. Yet I physically feel stiff, weak, inflexible and slow.

But luckily there is much more to how we feel than just a physical aspect. There are also emotional and mental well beings. And in those two, I very often feel much better than I've ever felt before.
If I compare my mental and emotional present feeling to 18 months ago, it is almost like I am a different person. I now generally feel at peace, filled with clarity, confidence and love to life, myself and people near me. Although tired, I am generally happy and content. And when I get upset, it is a very superficial feeling that passes quickly and not the deep seeded anger that used to consume me and made me dwell in it for hours.
When I feel doubts or fears or any other unpleasant emotions, they seem to be sensed and recognised creeping out from somewhere in the back corner and dealt with way before they completely take me over, like they used to.

Practising being honest to myself has tought me the real meaning of being positive. Because only when you are honest to yourself, you recognise those 'unpleasant' emotions early enough to deal with them in a positive manner and don't let them to completely consume you.

Another pact I did with myself early this year is to completely open to myself, the universe and to selected people around me. It feels so good!

So next time you meet me or call me and ask me: 'How are you today?', you might get the honest & open answer which might sound something like this:
'Generally, I am quite well, thank you. Physically, I am in pain, today around my lower back, not much, but it's still there. I do feel quite weak, very inflexible and stiff though, but emotionally content, with a lot of mental clarity on what to do next. But mostly, I am very excited about an early family dinner catch up later on.'

And 'How are you?'