I have recently read a book called Dying To Be Me by Anita Moorjani. I have read quite a few books over the past year, while being on my healing journey. I am not a very keen reader, however there is an occasional book I come across that really grabs me straight away and makes me contemplate. The book Dying To Be Me was one of them. The book itself talks about the near death experience and the importance of love. The 'love' part really made me contemplate.
What is love? How do I define love? Is there such thing as the definition of love, or is love greater than that? How do love and life interconnect?
I get the 'in love' part, when you meet someone and you fall in love... And I get the parent - child immeasurable, unconditional love, too. It's just there, it came to me somewhat naturally. But that greater love that this particular book is talking about, just as many other books on spiritual growth, that pure love within, love that blends into the universe, the infinite power of love that we supposed to all have within.... Well, that part I found extremely complicated and confusing.
So, as I do, I opened myself yet again to the universe to deliver the answer.
And then, during the meditation this morning, something happened. Two words came to me. Love & Fear. And I feel I am now beginning to understand.
I realised I have been driven by fear most of my life. From a very superficial decision making in the past such as what to wear to work (so that I am presentable and so that others think well of me) to more recent and very important decision making such as having chemotherapy or not. There are other examples such as what to eat at meal times, attending social events (that I might not necessary feel like attending), visiting in-laws, going to the office when I felt like I am exhausted and all I wanted and needed was a rest, cleaning the house (although all would wait and nothing would have significantly changed if I didn't) and so on....
Most, if not all of the above decisions were definitely driven by fear. Fear of what other people might think of me, fear of losing my job, not being able to pay mortgage or fear of disappointing friends, in-laws, myself etc or in my case later on - the fear of cancer coming back and more recently, the fear of cancer spreading...
I now know that every single thing I have ever thought of as 'I have to do' or 'I have no choice' or the 'just in case' was (and still is) driven by fear.
And that means that even though I have dealt with the fear of dying or the fear of cancer returning or living with cancer, I still have million superficial fears I need to learn to deal with.
So I openly and extremely happily embrace this morning's revelation that love is in fact replacing the actions driven by fear with the actions that are driven by love and only by love.
I am not sure if any of the above makes sense to you, but to me, it is an enormous and a very significant insight. I feel like I have reached a very important milestone on my healing journey and I couldn't wait to sit down to be able to write it down and have it recorded to remind myself over and over again...
I now know what love is. I finally get it.
Love is huge. Love is so big that we can't possibly define it in a sentence. Love is all and everything. Therefore all I do from now on will be questioned:
Is this action of mine driven by love or is it driven by fear?
My bone pain (caused by cancer) has returned recently, after I started to reduce my painkillers, so I did experience another set back. But this time it was different. Not in a way of intensity of the pain. The pain was just as bad as it was previously when around. I was in absolute agony. And I still am in pain, but it is getting better again, since I have learned to manage it well. The difference this time was my reaction to it. I reacted differently. I let go much easier and much faster than in the past. I also asked for help much faster and I found a possible solution, another bout of radiotherapy.
So today, on my way to my radio-oncologist I asked myself:
'Is this treatment to get rid of pain driven by fear or is it driven by love?'
How can a radiotherapy treatment be driven by love you may think? Well, it actually can. In my case, right now, it is. I love life. I love being active. I love being able to go for a walk on the beach, cycle with my daughter, go on a road trip with my family, a flight to exotic holiday destination.... I love cooking, sitting down, lounging around, doing arts and crafts.... These are only a few things that I absolutely love. And all of these things are compromised when in pain. Radiotherapy will fix my pain as it has in the past. So yes, here I come, driven by love! The love to life I absolutely love living and only the life I love, nothing else.
And so my life will head in the direction filled with love, from now on, always and forever.
How about yours?
Showing posts with label death. Show all posts
Showing posts with label death. Show all posts
Tuesday, May 29, 2012
Friday, May 11, 2012
Swimming In The Pond Of Doubts
Just as every night, I was on Twitter last night. @TinaVis is my Twitter ID.
I came across this article from the blog of Karen Pendy, a beautiful, positive and happy young woman, who recently passed away at the age of 37, from advanced breast cancer which had spread to her brain...
To some of you, who may have read my previous posts, the story of tumors that had spread into brain sounds familiar. Yes. I also was faced with that very same diagnosis. Interestingly, very similar age, too!
Needless to say, reading about her passing only 5 months after the diagnosis, left me slightly overwhelmed. It made me feel sad, a bit disappointed, a bit scared and definitely doubtful.
On the other hand, it did reinforce my positivity, since my scan last November showed my brain as all clear and I am still here on planet Earth, feeling well and getting better each and every day.
I know my prognosis is not bright, but I am filled with hope. And I know I am not the average person who falls into statistics.
Not only that... I strongly believe in the power of mind and my mind is telling me I am a long term survivor. Long term is considered 10+ years in the cancer world and I am convinced I can (and I will) achieve that.
But my hope is telling me I will be around for much longer, to see my beautiful (now 5 year old) daughter grow up and live fulfilling adult life, to grow old together with my beautiful man, to travel the world, to inspire people, to accomplish many things I have set myself to accomplish...
A month ago, or even a week ago, I would have said, there is no doubt about it... However, after reading the post last night, the doubt crept up on me. I woke up my man, started the 'midnight' conversation and cried out the fears. But the doubts stayed. Same old, same old...
What if I'm fooling myself?
What if my mind is tricking me?
What if my brain tumors come back?
What if my Doctors say: 'there's nothing else we can do' ?
Has anyone ever survived for more than 5 years after brain mets were diagnosed? Anyone???
Am I lucky enough to be that one of the very rare few (if there are any at all)?
Am I disillusioned?
And the list goes on...
I am swimming in the pond of doubts.
All I need now from myself is clarity and all I want from others is the belief and encouragement.
I will gain the clarity, I know how, but I am asking you all to send some belief and encouragement my way.
And I will be forever grateful.
Love to you all x
I came across this article from the blog of Karen Pendy, a beautiful, positive and happy young woman, who recently passed away at the age of 37, from advanced breast cancer which had spread to her brain...
To some of you, who may have read my previous posts, the story of tumors that had spread into brain sounds familiar. Yes. I also was faced with that very same diagnosis. Interestingly, very similar age, too!
Needless to say, reading about her passing only 5 months after the diagnosis, left me slightly overwhelmed. It made me feel sad, a bit disappointed, a bit scared and definitely doubtful.
On the other hand, it did reinforce my positivity, since my scan last November showed my brain as all clear and I am still here on planet Earth, feeling well and getting better each and every day.
I know my prognosis is not bright, but I am filled with hope. And I know I am not the average person who falls into statistics.
Not only that... I strongly believe in the power of mind and my mind is telling me I am a long term survivor. Long term is considered 10+ years in the cancer world and I am convinced I can (and I will) achieve that.
But my hope is telling me I will be around for much longer, to see my beautiful (now 5 year old) daughter grow up and live fulfilling adult life, to grow old together with my beautiful man, to travel the world, to inspire people, to accomplish many things I have set myself to accomplish...
A month ago, or even a week ago, I would have said, there is no doubt about it... However, after reading the post last night, the doubt crept up on me. I woke up my man, started the 'midnight' conversation and cried out the fears. But the doubts stayed. Same old, same old...
What if I'm fooling myself?
What if my mind is tricking me?
What if my brain tumors come back?
What if my Doctors say: 'there's nothing else we can do' ?
Has anyone ever survived for more than 5 years after brain mets were diagnosed? Anyone???
Am I lucky enough to be that one of the very rare few (if there are any at all)?
Am I disillusioned?
And the list goes on...
I am swimming in the pond of doubts.
All I need now from myself is clarity and all I want from others is the belief and encouragement.
I will gain the clarity, I know how, but I am asking you all to send some belief and encouragement my way.
And I will be forever grateful.
Love to you all x
Sunday, April 22, 2012
Hope
The definition of HOPE: " A feeling of expectation and desire for a certain thing to happen."
When you are faced with the diagnosis of advanced cancer (the cancer that has spread through different parts of the body), or any other seriously life threatening disease, hope is the one and only most important starting point. There is absolutely nothing without hope. No hope, no future.
When I heard my GP voicing the words: "I'm afraid the Xray results show the cancer has come back... " all went completely and absolutely blank. All. Everything disappeared and I was in a deep, empty, dark, black hole, nothing and no one with me, next to me, nor around me. I was in a total state of shock.
The one and only thing I remember to feel was an enormous fear. The fear of death. And an instant question arised: "how long before I die?"
I felt completely powerless, helpless, scared and utterly mortal.
Although always considering myself as a strong person with a solution to any problem thrown at me, at that very moment of the diagnosis, I was completely blank. Totally blinded by it. There was no answer, no solution, no potential plan, absolutely no hope...
All I could think of, when the initial shock settled slightly, was something to help me get through a week of pre-christmas celebrations we had lined up. So I asked my GP for sedatives.
Then, after few days of hazily and hopelessly wandering around under the influence of Valium, I decided to make a trip to the bookshop.
As I browsed through the shelves, a book called You Can Conquer Cancer jumped right out to my attention, and I decided to buy it.
The very next day we travelled to the beautiful Castaway Island in Fiji for our christmas holiday. I stopped taking Valium and started reading the book. It only took a page to fill me up with hope.
And there we are - HOPE!
Hope to me right then and there presented the shift of my feelings from being completely powerless, helpless, scared and utterly mortal, to:
Hope made me get rid of fear and uncertainty about the future, and instead makes me dream, plan, start doing and keep focusing on the joys of living. It makes me see the future bright and clear, no matter what obstacles (and there are many on my journey) I encounter. With hope within me, I feel safe and certain that no matter what comes my way in the future, all will be well, always.
When you are faced with the diagnosis of advanced cancer (the cancer that has spread through different parts of the body), or any other seriously life threatening disease, hope is the one and only most important starting point. There is absolutely nothing without hope. No hope, no future.
When I heard my GP voicing the words: "I'm afraid the Xray results show the cancer has come back... " all went completely and absolutely blank. All. Everything disappeared and I was in a deep, empty, dark, black hole, nothing and no one with me, next to me, nor around me. I was in a total state of shock.
The one and only thing I remember to feel was an enormous fear. The fear of death. And an instant question arised: "how long before I die?"
I felt completely powerless, helpless, scared and utterly mortal.
Although always considering myself as a strong person with a solution to any problem thrown at me, at that very moment of the diagnosis, I was completely blank. Totally blinded by it. There was no answer, no solution, no potential plan, absolutely no hope...
All I could think of, when the initial shock settled slightly, was something to help me get through a week of pre-christmas celebrations we had lined up. So I asked my GP for sedatives.
Then, after few days of hazily and hopelessly wandering around under the influence of Valium, I decided to make a trip to the bookshop.
As I browsed through the shelves, a book called You Can Conquer Cancer jumped right out to my attention, and I decided to buy it.
The very next day we travelled to the beautiful Castaway Island in Fiji for our christmas holiday. I stopped taking Valium and started reading the book. It only took a page to fill me up with hope.
And there we are - HOPE!
Hope to me right then and there presented the shift of my feelings from being completely powerless, helpless, scared and utterly mortal, to:
- start seeing the little sparkle of possibility of survival
- getting answers to million questions
- seeing the path to possible solutions
- opening the options of numerous treatments available
- opportunity for an enormous lifestyle change
- finding the positives to lean on
- million reasons to keep believing in positives
- finding the strength to not give in to the prognosis
- determination to stick to my new healthy life-style change
- love to life, myself and to people around me
- and the list goes on
Hope made me get rid of fear and uncertainty about the future, and instead makes me dream, plan, start doing and keep focusing on the joys of living. It makes me see the future bright and clear, no matter what obstacles (and there are many on my journey) I encounter. With hope within me, I feel safe and certain that no matter what comes my way in the future, all will be well, always.
Tuesday, April 10, 2012
Living With Cancer vs Dying From Cancer
It was last Friday (Good Friday) that Australian Current Affairs (ACA) aired Cancer Cure Claim, featuring Dr. Ian Gawler (http://www.gawlerblog.com/).
It was with excitement I awaited to see an amazing man such as Dr Ian Gawler on mainstream television. Advanced cancer survivor of 30+ years, with then seriously poor prognosis of maximum 6 months to live in mid 70s... And here he is now, in 2012, still going strong, healthy and well and helping others living with cancer and numerous general people who aspire to live a healthy, well balanced life. His foundation and him personally cover many aspects of mind - body medicine and encourage people to take control of their well - being in an integrative way.
He is the main inspiration on my own cancer journey and I feel absolutely nothing but pure respect towards him.
If you watched the segment on ACA, you would have soon realised that the story didn't unfold the way I expected. In fact, it was completely opposite, condemning the amazing work Ian has been advocating over the past 25+ years. I was left extremely sad and disappointed.
I stayed at The Gawler Foundation (http://www.gawler.org/) twice last year.
First time it was soon after my diagnosis of advanced breast cancer. I attended a 10 day residential program and after an amazing and very empowering experience of abundant learning about the path of the journey of living with cancer, I decided to return to attend a 5 day follow up 'cancer retreat' later in the year, together with my partner. Needless to say, it was the best thing I have ever done for myself in my whole entire life.
I can briefly list just a few things I have learned at The Gawler Foundation:
So, watching the segment on ACA last Friday, condemning the amazing work they do at The Gawler Foundation, was nothing less but heartbreaking for me. And the comment by Tracy Grimshaw to finish with: "Desperate people do desperate things" was completely improper and out of place.
I am not anywhere near close to being a desperate person, nor is anyone I have crossed paths while at The Gawler Foundation.
Living life with cancer is very challenging. It is a very fine line between living with cancer and dying from it. I am a strong believer in the power of mind. Yes, of course there are million types of different cancers, and even though advanced and many seem the same, yet they are all different. Just as people are different, cancers behave differently. How come some people with the 'same' type of cancer fall into statistics and die exactly in due time, while others live many years and can have good quality of life regardless of diagnosis?!?
I don't know about you, but my common sense tells me to look for clues and answers in people that are long term survivors. Especially those rare few who are considered 'spontaneous remissions'. And when you do start reading and researching into those cases, you find there are many more than your average Oncologist (like Dr. Lowenthal who appeared on ACA) tells you.
Unfortunately our conventional medicine can only afford researches into prevention and treatment drugs, sponsored by huge pharmaceutical companies, which are not interested in long term survivors, but rather in people who have cancer and need those heavy drugs to somehow extend their life or ease them into death. It is a huge industry. I, as a cancer patient, undergoing numerous treatments, am worth tens of thousands of dollars a year, if not hundreds... Once I'm in a remission (a survivor!), treatments and medications stop and I am no longer of any value to them. That, sadly, is reality.
So no wonder there are no funds to support research in long term survivors... Quite cruel, isn't it?
I do apologise for the lengthy post and I am extremely grateful if you are still reading it. But I have to get this off my chest, as I find it quite frustrating and extremely unfair.
All I tried to explain is the difference between LIVING WITH CANCER and DYING FROM CANCER. I am living with it. And I am living well. In fact, my quality of life is way higher now then has ever been before.
It is both, good and bad, when I either see someone I haven't seen in ages or meet someone new and they say: 'so sorry about your cancer, wow, but you look so good, I would have never thought...'
It's good because it's true. Although I look different (from side effects of numerous different drugs I am on) I still look healthy and well. Probably healthier than most of the general population, as I am looking after myself with extremely healthy diet and lifestyle.
And it's bad, because general person expects me (diagnosed with advanced / secondary / a very serious stage 4 cancer) to look like I'm dying.
And that, I suppose is the main difference.
The perception of the world today still is that having cancer means one will die way before their time, while in fact, one actually can live an extremely fulfilling abundant life managing cancer just as any other chronic illness.
Or even better, just as the likes of Dr.Ian Gawler or another amazing Australian - Petrea King (the founder of Quest For Life), one can achieve the state of complete remission.
Hopefully, sometime in the very near future every single newly diagnosed cancer patient will aim for the above.
And I sincerely hope that our conventional Doctors, Oncologists and media, start encouraging the awakenings of survivors within us all and support us all to take path towards this amazing and already achievable goal, with all their respect, optimism and positivity or just keep nice and quite, and learn to practice some compassion if there's nothing hopeful to be said...
It was with excitement I awaited to see an amazing man such as Dr Ian Gawler on mainstream television. Advanced cancer survivor of 30+ years, with then seriously poor prognosis of maximum 6 months to live in mid 70s... And here he is now, in 2012, still going strong, healthy and well and helping others living with cancer and numerous general people who aspire to live a healthy, well balanced life. His foundation and him personally cover many aspects of mind - body medicine and encourage people to take control of their well - being in an integrative way.
He is the main inspiration on my own cancer journey and I feel absolutely nothing but pure respect towards him.
If you watched the segment on ACA, you would have soon realised that the story didn't unfold the way I expected. In fact, it was completely opposite, condemning the amazing work Ian has been advocating over the past 25+ years. I was left extremely sad and disappointed.
I stayed at The Gawler Foundation (http://www.gawler.org/) twice last year.
First time it was soon after my diagnosis of advanced breast cancer. I attended a 10 day residential program and after an amazing and very empowering experience of abundant learning about the path of the journey of living with cancer, I decided to return to attend a 5 day follow up 'cancer retreat' later in the year, together with my partner. Needless to say, it was the best thing I have ever done for myself in my whole entire life.
I can briefly list just a few things I have learned at The Gawler Foundation:
- how to take control of my 'cancer journey' (to make decisions of my treatments - conventional such as chemotherapy, radiotherapy, surgery and complementary such as acupuncture, holistic GP, massage... with clarity and determination)
- how to accept my diagnosis and achieve peace of mind (tools and techniques)
- how to eliminate my past emotional barriers (counselling and some helpful self-techniques and practices, useful resources - books, CDs, podcasts...)
- how to look after myself physically (with proper nutrition, diet, exercise...)
- the importance of balanced life (mind body soul)
- and many many more
So, watching the segment on ACA last Friday, condemning the amazing work they do at The Gawler Foundation, was nothing less but heartbreaking for me. And the comment by Tracy Grimshaw to finish with: "Desperate people do desperate things" was completely improper and out of place.
I am not anywhere near close to being a desperate person, nor is anyone I have crossed paths while at The Gawler Foundation.
Living life with cancer is very challenging. It is a very fine line between living with cancer and dying from it. I am a strong believer in the power of mind. Yes, of course there are million types of different cancers, and even though advanced and many seem the same, yet they are all different. Just as people are different, cancers behave differently. How come some people with the 'same' type of cancer fall into statistics and die exactly in due time, while others live many years and can have good quality of life regardless of diagnosis?!?
I don't know about you, but my common sense tells me to look for clues and answers in people that are long term survivors. Especially those rare few who are considered 'spontaneous remissions'. And when you do start reading and researching into those cases, you find there are many more than your average Oncologist (like Dr. Lowenthal who appeared on ACA) tells you.
Unfortunately our conventional medicine can only afford researches into prevention and treatment drugs, sponsored by huge pharmaceutical companies, which are not interested in long term survivors, but rather in people who have cancer and need those heavy drugs to somehow extend their life or ease them into death. It is a huge industry. I, as a cancer patient, undergoing numerous treatments, am worth tens of thousands of dollars a year, if not hundreds... Once I'm in a remission (a survivor!), treatments and medications stop and I am no longer of any value to them. That, sadly, is reality.
So no wonder there are no funds to support research in long term survivors... Quite cruel, isn't it?
I do apologise for the lengthy post and I am extremely grateful if you are still reading it. But I have to get this off my chest, as I find it quite frustrating and extremely unfair.
All I tried to explain is the difference between LIVING WITH CANCER and DYING FROM CANCER. I am living with it. And I am living well. In fact, my quality of life is way higher now then has ever been before.
It is both, good and bad, when I either see someone I haven't seen in ages or meet someone new and they say: 'so sorry about your cancer, wow, but you look so good, I would have never thought...'
It's good because it's true. Although I look different (from side effects of numerous different drugs I am on) I still look healthy and well. Probably healthier than most of the general population, as I am looking after myself with extremely healthy diet and lifestyle.
And it's bad, because general person expects me (diagnosed with advanced / secondary / a very serious stage 4 cancer) to look like I'm dying.
And that, I suppose is the main difference.
The perception of the world today still is that having cancer means one will die way before their time, while in fact, one actually can live an extremely fulfilling abundant life managing cancer just as any other chronic illness.
Or even better, just as the likes of Dr.Ian Gawler or another amazing Australian - Petrea King (the founder of Quest For Life), one can achieve the state of complete remission.
Hopefully, sometime in the very near future every single newly diagnosed cancer patient will aim for the above.
And I sincerely hope that our conventional Doctors, Oncologists and media, start encouraging the awakenings of survivors within us all and support us all to take path towards this amazing and already achievable goal, with all their respect, optimism and positivity or just keep nice and quite, and learn to practice some compassion if there's nothing hopeful to be said...
Monday, March 5, 2012
"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?
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?
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....
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....
Thursday, August 11, 2011
The Feeling Of Scared
There it is... The feeling of being scared is back.
It's been a while.
I am to acknowledge the feeling, embrace it, and then move on to a peaceful place.
So I am acknowledging it.
It is not a nice feeling. I can feel it in the chest, slightly short in breath, chatterbox on full volume in my head... 'What if' seems to be the most popular beginning of the questions forming in my mind:
What if I'm wrong?
What if I won't ever feel better?
What if I am going to be feeling more and more pain again?
What if all the lumps in my body start growing bigger and bigger?
What if I'm disillusioned seeing myself healthy in near future?
What if I am still in a denial?
What if I die in few years???
I love my daughter so much. There is no way in the world (or the whole universe) I would ever want to leave her. She is most amazing.
I love myself, too. But, do I love myself enough? Do I love myself enough to get my act together and get back into the routine I know it's most important on my healing journey? The routine of daily practice that brings me 'the peace of mind'... It's all right there in front of me, ready to be done... It's just that, for some reason, I have fallen into this 'I need a break' mode.
I need a break???!!!!??? What the...?!? What kind of break? A break from contentment? A break from 'peace of mind'?
Obviously, it is hard work to sustain the contentment, that's why there are so many miserable people walking around the world.
It is a constant, sometimes more than once daily, practice. It took me at least a couple of weeks to start feeling positive effects. And it took me about two weeks without practice to start feeling negative effects.
The time is NOW!
It is now, that I am to stop, take few deep breaths and keep still for 20 minutes of peace and quite. But, will I? My mind is playing up....
Here I am, writing the post instead.
All of a sudden, as 'the feeling of scared' was acknowledged, I am starting to embrace it!
I'll keep lovingly embracing it for a while longer.
I know it's healthy to feel scared sometimes, and I know it's OK to feel sorry for myself for having such serious disease. I know everyone gets scared sometimes, especially scared of death.
I also know I do love myself enough to get back into my so needed and loved state of contentment. And I am feeling blessed and very grateful to have the knowledge and all of the tools necessary to achieve it, over and over again.
But in times when fear creeps up out of the deepest dungeon, I wish I had someone to accompany me, perhaps hold my hand, whisper in my ear quietly and lovingly, hold me tight and lead me there, where I need to go...
However I do know it is my very own personal journey, which only I alone can travel, to reach my goal of perfect health - in my mind, body and soul!
It's been a while.
I am to acknowledge the feeling, embrace it, and then move on to a peaceful place.
So I am acknowledging it.
It is not a nice feeling. I can feel it in the chest, slightly short in breath, chatterbox on full volume in my head... 'What if' seems to be the most popular beginning of the questions forming in my mind:
What if I'm wrong?
What if I won't ever feel better?
What if I am going to be feeling more and more pain again?
What if all the lumps in my body start growing bigger and bigger?
What if I'm disillusioned seeing myself healthy in near future?
What if I am still in a denial?
What if I die in few years???
I love my daughter so much. There is no way in the world (or the whole universe) I would ever want to leave her. She is most amazing.
I love myself, too. But, do I love myself enough? Do I love myself enough to get my act together and get back into the routine I know it's most important on my healing journey? The routine of daily practice that brings me 'the peace of mind'... It's all right there in front of me, ready to be done... It's just that, for some reason, I have fallen into this 'I need a break' mode.
I need a break???!!!!??? What the...?!? What kind of break? A break from contentment? A break from 'peace of mind'?
Obviously, it is hard work to sustain the contentment, that's why there are so many miserable people walking around the world.
It is a constant, sometimes more than once daily, practice. It took me at least a couple of weeks to start feeling positive effects. And it took me about two weeks without practice to start feeling negative effects.
The time is NOW!
It is now, that I am to stop, take few deep breaths and keep still for 20 minutes of peace and quite. But, will I? My mind is playing up....
Here I am, writing the post instead.
All of a sudden, as 'the feeling of scared' was acknowledged, I am starting to embrace it!
I'll keep lovingly embracing it for a while longer.
I know it's healthy to feel scared sometimes, and I know it's OK to feel sorry for myself for having such serious disease. I know everyone gets scared sometimes, especially scared of death.
I also know I do love myself enough to get back into my so needed and loved state of contentment. And I am feeling blessed and very grateful to have the knowledge and all of the tools necessary to achieve it, over and over again.
But in times when fear creeps up out of the deepest dungeon, I wish I had someone to accompany me, perhaps hold my hand, whisper in my ear quietly and lovingly, hold me tight and lead me there, where I need to go...
However I do know it is my very own personal journey, which only I alone can travel, to reach my goal of perfect health - in my mind, body and soul!
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