As I'm lying down, resting, healing (have been for the past couple weeks since my last radio therapy), I can not help but feeling sorry for myself...
I am unwell. Truly, physically unwell. I have not been this unwell ever before in my life.
I am weak, extremely fragile, finding it very hard to walk, sit, stand for longer than 5 minutes at the time... I hardly leave the house these days. Dropping off my daughter to school is an enormous task. Even just visiting the Doctor sometimes too hard ... I can't go down the beach, since I can't walk for more than couple hundred meters. I don't go out to cafes at the moment, since I can't sit properly for more than 5 minutes and it requires way too much of an effort to dress up in the first place...
My favorite place is home, in my recliner. Just lying down, snuggled in a blankie, cups of tea, a nice romantic comedy, my iPhone and 3 comfort meals a day. My only desired company is my beautiful daughter and my loving man...
My emotions are all over the place too.
I mostly feel sad. And frustrated for being so useless. Angry, when I wish to do something and I realise I can't. I also feel scared of losing the vision ...
The vision of being well again.
The numbness in my leg, particularly in my foot, is much easier to handle than the pain, but yet it's hard to deal with when trying to move around. Or even just putting clothes on. It requires much too much effort.
The tingling sensation in my chin is scary. Scary because it's been there before, about a year ago. And soon after that, there came cancer diagnosis in my chin, scull and tumors in my brain. The tingling went away after radio treatment, but came back recently ... Does that mean cancer in my chin is back?
We were meant to be in Thailand at the moment. A three weeks long warm sunny tropical family holiday. Creating lovely memories. Well, we are not there, because I'm too unwell. The trip has been postponed till mid September. Something to look forward to. But I want to be well! I want to be healthy. I want to be pain free, numbness free, feeling well, energetic, and full of life. Possibly on a very low dose of medication, no steroids. Will I?
Another challenge is my hair. It's been over 6 weeks since my chemotherapy. My body hair is slowly coming back, but my hair is staying so very thin... It's just horrible. I cut it short the other day to get rid of that horrid 'zombie' hair look. But didn't do it any justice. Now all my bright red subcutaneous tumors (which are placed all over my scull) are obvious and are visibly popping out... Not a good look. Scary, really.
I look unwell. I feel unwell.
And I had enough! I am exhausted. Exhausted of needing to make important decisions on my future treatments, exhausted of feeling old, fragile, unhealthy, weak, unstable, uncertain.... And sick of seeing someone else in a reflection when I look in the mirror.
My only wish is to feel well.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Wednesday, June 27, 2012
Saturday, June 9, 2012
Like A Yo-Yo
Coming off steroids isn't fun. I feel annoyed, shaky inside, weak on the outside. Still moon faced, horribly bloated and being very thin haired doesn't help.
The good part is, I am reducing the steroids. Hopefully I can go down to zero. That's the goal. At the moment I'm down to 3mg, from original 4mg.
The above was written about 4 weeks ago now...
Since than, all has changed. Again.
As I reduced the steroids down to 2.5mg, the pain returned with the vengeance. So I quickly increased the dose back up. And up. And up, to the old 4mg....
There goes my excitement of getting rid of the drug.
The worst part is, once the pain comes back (with the vengeance), it likes to take a very long time to settle. And by saying very long time, I mean weeks! It's happened previously and it's the third time now. I hope to have learned the lesson.
Back to the pain... Yet again! That horrid pain that keeps me up at night, makes me pop extra pills like lollies. The pain that makes me cry out loud for hours, makes me angry, frustrated, uncentered, irritated... It makes me not being able to concentrate and makes me tired, sleepy, cranky, upset, unsettled, sad, sometimes doubtful, unable to meditate .... The kind of pain that pretty much takes over my existence.
I now know it's temporarily, but that doesn't make it any easier. Easier to handle emotionally perhaps, but not physically. It is just plain hard.
In one of those moments of pain, this insight came by:
'We are never given what we are not able to handle'
Blah, blah, blah... I thought at the time, since I was in agony and I didn't feel like I was handling it at all.
But, here I am. Yes, I am strong, positive, determined and I love life, no matter. I love life so much, that no matter how bad my pain, I am willing to handle it. Handle it in any way I possibly can. I am doing whatever it takes to get well again.
Like a Yo-Yo, that's my life at the moment. And the moment seems to last forever ...
But that's it, I suppose. No matter how bad it is, there are million things around me every day, reminding me how precious and beautiful my life is.
The nature with its crisp ocean breeze, my family with the warmth of hugs and kisses, or lovely self-initiated 'I love you's by my daughter, the deliciousness of fresh, nutritious food, the fun times filled with laughter, surrounded by my dear friends, ....
All different things, great and small. In every moment of our life. Things considered good and the ones considered bad. All together, woven into this amazing journey called life.
And I decide to accept it all. Including pain.
I decide to stay right here, right now, being present in this very moment. Accepting every bit of it, as much as I possibly can. After all, Yo-Yos are meant to be fun, aren't they?
The good part is, I am reducing the steroids. Hopefully I can go down to zero. That's the goal. At the moment I'm down to 3mg, from original 4mg.
The above was written about 4 weeks ago now...
Since than, all has changed. Again.
As I reduced the steroids down to 2.5mg, the pain returned with the vengeance. So I quickly increased the dose back up. And up. And up, to the old 4mg....
There goes my excitement of getting rid of the drug.
The worst part is, once the pain comes back (with the vengeance), it likes to take a very long time to settle. And by saying very long time, I mean weeks! It's happened previously and it's the third time now. I hope to have learned the lesson.
Back to the pain... Yet again! That horrid pain that keeps me up at night, makes me pop extra pills like lollies. The pain that makes me cry out loud for hours, makes me angry, frustrated, uncentered, irritated... It makes me not being able to concentrate and makes me tired, sleepy, cranky, upset, unsettled, sad, sometimes doubtful, unable to meditate .... The kind of pain that pretty much takes over my existence.
I now know it's temporarily, but that doesn't make it any easier. Easier to handle emotionally perhaps, but not physically. It is just plain hard.
In one of those moments of pain, this insight came by:
'We are never given what we are not able to handle'
Blah, blah, blah... I thought at the time, since I was in agony and I didn't feel like I was handling it at all.
But, here I am. Yes, I am strong, positive, determined and I love life, no matter. I love life so much, that no matter how bad my pain, I am willing to handle it. Handle it in any way I possibly can. I am doing whatever it takes to get well again.
Like a Yo-Yo, that's my life at the moment. And the moment seems to last forever ...
But that's it, I suppose. No matter how bad it is, there are million things around me every day, reminding me how precious and beautiful my life is.
The nature with its crisp ocean breeze, my family with the warmth of hugs and kisses, or lovely self-initiated 'I love you's by my daughter, the deliciousness of fresh, nutritious food, the fun times filled with laughter, surrounded by my dear friends, ....
All different things, great and small. In every moment of our life. Things considered good and the ones considered bad. All together, woven into this amazing journey called life.
And I decide to accept it all. Including pain.
I decide to stay right here, right now, being present in this very moment. Accepting every bit of it, as much as I possibly can. After all, Yo-Yos are meant to be fun, aren't they?
Sunday, May 27, 2012
Midnight Monologue (With The Pain)
Why are you here?
What is it that you are telling me?
What am I supposed to do?
How am I supposed to treat you?
How can I possibly just 'be with it' when it hurts so bad?
Is it the leftover pain from within that needs to be let go off? Perhaps acknowledged properly first?
Let go off pain - how? With tears? That seems to help, but only if in a combination of painkiller top ups, monologues like this one and the number of mixed emotions (from deep sadness and helplessness to indescribable frustration and anger) ....
I am acknowledging how blessed I am with my life in the now. I am so blessed to have most loving & caring man & most amazing daughter, my perfect family. Beautiful friends. In the now.
But it wasn't always like that. My past life was unpleasant. My childhood was filled with domestic violence and abuse on all levels. It was almost a complete opposite to my current life. I believe I dealt with all that a long time ago. I believe I have moved on.
Practicing mindfulness, should I keep going back to try and explore all my past wounds further? Randomly or intentionally? Only if the feelings arise or regardless - even when all seems perfect in the now?
I seriously feel I have moved on. Definitely don't feel stuck.
But perhaps I am, on a subconscious level, without realizing?
Perhaps that's what the pain is all about? The leftover of deeply seeded hurt, guilt, fear and anger from my childhood years.
Although I don't feel the guilt, nor fear or anger at present anymore, it could as well be still there, cemented somewhere deep down, and coming out as a horrid & unbearable pain. Is that possible?
Perhaps the right answer truly is: let it be ... and then: let it go
I'm here in Melbourne for a weekend meditation workshop as I'm writing this post. And it's not just any kind of meditation workshop. It's The Mind That Changes Everything, run by Ian Gawler, one of the key inspirations and teachers on my healing journey. I feel so blessed to be able to attend this workshop. And it might as well be perfect timing for my pain to have returned and possibly given me the opportunity to explore it into details, acknowledge it & accept it, (dare I say it) embrace it and finally possibly let it go .... This time for good?
Or perhaps I need to learn to live with it in a loving manner.
Learning to love the pain, well , that's a huge challenge I would love to conquer! So I now open myself to the universe to send me the message once again, to lighten the right path so I can keep heading into the right direction.
Affirmation:
I now lovingly accept every single bit of myself, from my appearance, to my thoughts, feelings and emotions, including aches and pains.
All is me & I am all. Only because of it ALL, I've been moulded into the magnificent person I am today.
What is it that you are telling me?
What am I supposed to do?
How am I supposed to treat you?
How can I possibly just 'be with it' when it hurts so bad?
Is it the leftover pain from within that needs to be let go off? Perhaps acknowledged properly first?
Let go off pain - how? With tears? That seems to help, but only if in a combination of painkiller top ups, monologues like this one and the number of mixed emotions (from deep sadness and helplessness to indescribable frustration and anger) ....
I am acknowledging how blessed I am with my life in the now. I am so blessed to have most loving & caring man & most amazing daughter, my perfect family. Beautiful friends. In the now.
But it wasn't always like that. My past life was unpleasant. My childhood was filled with domestic violence and abuse on all levels. It was almost a complete opposite to my current life. I believe I dealt with all that a long time ago. I believe I have moved on.
Practicing mindfulness, should I keep going back to try and explore all my past wounds further? Randomly or intentionally? Only if the feelings arise or regardless - even when all seems perfect in the now?
I seriously feel I have moved on. Definitely don't feel stuck.
But perhaps I am, on a subconscious level, without realizing?
Perhaps that's what the pain is all about? The leftover of deeply seeded hurt, guilt, fear and anger from my childhood years.
Although I don't feel the guilt, nor fear or anger at present anymore, it could as well be still there, cemented somewhere deep down, and coming out as a horrid & unbearable pain. Is that possible?
Perhaps the right answer truly is: let it be ... and then: let it go
I'm here in Melbourne for a weekend meditation workshop as I'm writing this post. And it's not just any kind of meditation workshop. It's The Mind That Changes Everything, run by Ian Gawler, one of the key inspirations and teachers on my healing journey. I feel so blessed to be able to attend this workshop. And it might as well be perfect timing for my pain to have returned and possibly given me the opportunity to explore it into details, acknowledge it & accept it, (dare I say it) embrace it and finally possibly let it go .... This time for good?
Or perhaps I need to learn to live with it in a loving manner.
Learning to love the pain, well , that's a huge challenge I would love to conquer! So I now open myself to the universe to send me the message once again, to lighten the right path so I can keep heading into the right direction.
Affirmation:
I now lovingly accept every single bit of myself, from my appearance, to my thoughts, feelings and emotions, including aches and pains.
All is me & I am all. Only because of it ALL, I've been moulded into the magnificent person I am today.
Friday, May 18, 2012
"If You Think You Can Or If You Think You Can Not, You Are Right!"
Very wise quote by Henry Ford. It made me think, many times... And every time I agreed to it, strongly.
I had a full body bone scan yesterday. Results reviewed by my Doctor today. The results were 'kind of' neutral. I say neutral, because they weren't really much worse than a year ago, which in the 'advanced cancer terms' means good.
Well, bad news is, that even after chemo, there still are 30+ tumors showing in the bones pretty much all over my body: scull, neck, one of the shoulders, all over ribs, lower spine, mid spine, upper spine, both hips, pelvis, down both legs.... yes, all over.
However, they are not new. They have been there for well over a year, they haven't grown and many of them are possibly shrinking.
The above news can easily be taken with a huge disappointment and negativity. I could easily make myself feel sad, angry, scared, doubtful, full of 'what ifs' etc. And possibly make myself spiral into the darkness and depression.
But I choose not to.
I take the news as positive. Very much so.
There is no talk about my organs being affected, which is great. No talk about being worse, or that chemotherapy is not working, or that there are no more treatments left etc.
My pain level is much better than a month ago, which is fantastic. I am reducing the painkillers again, yay! I feel quite well, energetic. Physically much better than 6 months ago, much stronger, too. Mentally, I am filled with clarity on what to do next. Spiritually, I am content and with deeply seeded trust and belief that all is unfolding perfectly.
It is all in the mind, isn't it? We make choices every single moment of our life. We are blessed with being absolutely free to decide on pretty much everything: what we eat, what we wear, what we say, what we think, how we feel... Every moment of every single day. It is completely up to us. And it is all in our head (or wherever the mind might be hidden...). Our mind is such an amazingly powerful tool.
A negative outlook vs a positive outlook. Both extremely powerful. So different, complete opposites, but yet both 100% right. Can you see that?
How about you? Which outlook do you decide to follow?
I had a full body bone scan yesterday. Results reviewed by my Doctor today. The results were 'kind of' neutral. I say neutral, because they weren't really much worse than a year ago, which in the 'advanced cancer terms' means good.
Well, bad news is, that even after chemo, there still are 30+ tumors showing in the bones pretty much all over my body: scull, neck, one of the shoulders, all over ribs, lower spine, mid spine, upper spine, both hips, pelvis, down both legs.... yes, all over.
However, they are not new. They have been there for well over a year, they haven't grown and many of them are possibly shrinking.
The above news can easily be taken with a huge disappointment and negativity. I could easily make myself feel sad, angry, scared, doubtful, full of 'what ifs' etc. And possibly make myself spiral into the darkness and depression.
But I choose not to.
I take the news as positive. Very much so.
There is no talk about my organs being affected, which is great. No talk about being worse, or that chemotherapy is not working, or that there are no more treatments left etc.
My pain level is much better than a month ago, which is fantastic. I am reducing the painkillers again, yay! I feel quite well, energetic. Physically much better than 6 months ago, much stronger, too. Mentally, I am filled with clarity on what to do next. Spiritually, I am content and with deeply seeded trust and belief that all is unfolding perfectly.
It is all in the mind, isn't it? We make choices every single moment of our life. We are blessed with being absolutely free to decide on pretty much everything: what we eat, what we wear, what we say, what we think, how we feel... Every moment of every single day. It is completely up to us. And it is all in our head (or wherever the mind might be hidden...). Our mind is such an amazingly powerful tool.
A negative outlook vs a positive outlook. Both extremely powerful. So different, complete opposites, but yet both 100% right. Can you see that?
How about you? Which outlook do you decide to follow?
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.
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....
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
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
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