Tuesday, February 28, 2012

The Meltdown

I had a lovely weekend and felt good on a nice summery Monday morning. After dropping off my daughter at school, I needed to do a blood test, which is necessary a day prior my next round of chemotherapy. I had a 'chemo break' last week and was about to start the new (fourth) cycle. Each cycle consists of 3 rounds and 1 week break and I am to have 6 in total. So I am now midway. Great, the countdown begins.

Having chemo is not by any means a good thing. No matter how smooth or well tolerated chemo is, it is an extremely unpleasant experience. My chemo is an IV form and even though it only takes about 45 min to administer, it is not nice to say the least. You sit in a neon lit room of the clinic with many other cancer patients and do nothing but wait until it all flows through your veins. You also get some 'extras', either pills or shots for side effects. You are basically filled up with a variety of legal synthetic drugs.
4 years ago, all of the drugs made me extremely sick for the first 24 hours. In fact so sick, I couldn't share the room with anyone, not even with my daughter or any family member. I couldn't talk, eat, drink or do anything but curl up in bed, in the dark and try to sleep it off. Or else I would have been extremely nauseous.
This time around is much better. Different, newer drugs and much lighter immediate side effects. I feel tired, slightly light headed, looking pale, but still able to do all normal chores like picking up my girl from school and taking her to ballet class, having dinner etc. All good from that part.
But yet, it doesn't feel nowhere near pleasant. I would have never add chemo to my 'to do list'. Honestly, it absolutely sucks (excuse my language) and just the thought of it irritates me.

Anyhow, a day prior each chemo, I need a blood test for Doctor to see my blood and my organs (like kidneys) are well enough to handle the chemicals...
So off I went.
I started really disliking blood tests and needles generally. I've been having way too many over the past couple months. And I think my veins can tell. They seem to go on strike every time I enter the Pathology room, or the Vitamin C room, where I'm getting my weekly high doses of Vitamin C through IV. The nurses are having serious troubles finding my veins.
Yesterday morning, all bright and early, happened again. The nurse missed the vein twice. And it was painful. But more so, it was annoying me. All of a sudden I started feeling physically sick, I thought I was going to faint. I got very hot and covered in sweat. Almost shaky. All I wanted is to get out of there.
I had two nurses giving me attention, wanting to try again... But all I could do was walk out and skip the blood test. I had two band aids on both arms, caused by unsuccessful trials.
I felt physically sick and thought I would faint.
Mentally, I could feel the whole lot of unpleasant emotions arising... Stronger and stronger all the stuff started to come out of somewhere deep inside, right out through my body, to my mind and out of my eyes and through my mouth....
Just as I reached the car, the total meltdown began.

I phoned my man. Out came swear words galore, out came the tears pouring, out came 'why me's, 'not fair's, and more and more F words (*I am not the person who swears, ever, no F words nor similar are in my vocabulary).... They all just came out flooding. Out of, what seemed nowhere... But yet it all came from somewhere deep inside of me. It was a moment of unpleasant emotions and it came pouring out.

When we practice mindfulness, unpleasant emotions like anger, become just another emotion to respond to, not to live in. We learn to observe, not to react.
But yet I reacted. I reacted wholeheartedly, crying, yelling, swearing, almost abusing my innocent man on the phone.

And this is what I've learned:
Practice of mindfulness is a lengthy process and no matter how long you manage to stay in 'the good place', it is (unfortunately) not the destination, but a life long journey, which requires one step at a time. Many steps are easy, and get even easier with practice, as you get 'fitter'. You are walking straight line, flat, relaxed pace. Until all of a sudden, you reach an extremely steep hill, or a huge rock to climb, a fence to jump over, or a slippery wet part, or an icy cold patch, a dangerous curve or perhaps just a little sharp stone...
Each step you take is important.
It's not about trying to control the actual journey, but keeping the determination to stay on the path no matter what comes your way, keeping the pace comfortable, safe, accepting whatever comes your way, no matter how unpleasant the circumstances and emotions associated with experience are.

So I had a meltdown. A complete meltdown I have not expected to have. It all came out, which obviously had to, as it was there, somewhere. I felt much lighter afterwards.
And I didn't let the meltdown consume my whole existence. I didn't drag it on and on. It came all of a sudden, I let it all out, I was a bit surprised, shed few extra tears during the day and wondered where did it all come from? But I also sat down for half an hour, in peace and quite, practicing mindfulness meditation to calm my mind and gain some clarity, mostly on where and why did it all happen.
I didn't get the answer, but did calm down greatly. And I didn't continue trying to analyse it or catastrophise it or making up stories around and about it.
Although I am a complete beginner in the vastness of the mindfulness practice, I did notice a difference in dealing with the meltdown, comparing to my past, pre-cancer life. The best part is, I now feel much lighter and calmer. And yet again, I am at peace.

How about you? How do you deal with the meltdowns? How do you cross the obstacles? Would love to hear!

Thursday, February 23, 2012

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?

Monday, February 20, 2012

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....






Tuesday, February 7, 2012

Dear 16 year old me!

As you are all curled up in bed, completely lost in the darkness of it all, feeling totally alone, small and fragile, full of nothingness, but yet overfilled by such powerful unpleasant and confused emotions of rage and angst and totally consumed by hatred... hatred to the world around you and to yourself...

I wish I could've been there with you! I would have been holding you tight, comfort you and tell you that
- the world is so much bigger than your small 'home'
- you will go out there and explore the world and yes, you will find a place you love, a place where you feel safe and where you feel at home
- your life is so precious, this is just a stage, although a 10 years long stage, but it will pass, eventually
- the first love is nothing but a stepping stone towards the real love, which, yes, you will find in your early thirties
- the 'family' is not there to stay and haunt you through your life...
- you will be an independent adult before you know & you will leave your broken home and cut the circle of abuse and violence
- you are not alone in this world... there are many people who love you and will support you through whatever happens
- you will experience most amazing things, see & visit most amazing places, and meet many amazing people
- you will find happiness, love and contentment
- you will stop hating and learn to forgive
- you will feel loved, fulfilled, joyous, carefree and sometimes even exceptional

No matter how hard it seems, no matter how dark it seems, it is not that way. You are only 16 years old, baby, you have been unwanted, abandoned, unloved and abused...
It is extremely hard to see it, but believe me, Tina, there is a very bright light at the end of the tunnel and no matter how difficult it all seems, as time passes, it does get easier. It really is just a stage, a stage that has been going on for a very long time and started way before you were able to act on it. You were only a child then, Tina! A young, innocent child, who, by no means could have known how to defend herself.

But the great news is, you are learning the lesson, which is going to help you enormously in your future.
Life is not all rosy, as you know, and it continuously throws many challenges at you. One of them will come in the peak of your newly found happiness, when you are a new mother of most amazing little girl. You will get cancer.

And yet again you will get filled with anger and fear, resentment and guilt.
Until, at 37, the cancer returns and the most miraculous thing happens.

This time, as you face the death, something changes. You make a conscious decision to choose life. It's you, Tina, with your strength you have gathered through those many past years of suffering. It all did happen for a reason.
As you are now facing, for many people, the biggest challenge ever, it doesn't seem that way to you. It is just another challenge.
But this time, you are an adult. You are strong and you feel strong. You love and you feel loved. You are focused, determined and at ease with it. You love who you've become and therefore you love yourself. You have an enormous reason to live, you are a mother... You feel loved, safe and secure. There is no room for anger nor fear left in you....
Life is oh so precious. And you know it and therefore you live it. You truly live it, and you are at peace.
The good news is, you are only turning 39 at present and you've got many years ahead.
Keep practicing mindfulness, day in, day out, and all will be well.

Love x
Tina