I've lived through few weeks filled with horrid pain, yet again. And last week there was a little bit of history repeating...
Honestly, I wish it wasn't.
All I want is to be well. My greatest wish of all is to wake up one morning, open my eyes and while assessing my well being while still in bed, realizing my body has no aches, no pains, feeling well and strong and healthy. Get out of bed with no physical effort, light footed, and walk out of the bedroom well balanced, light and full of life.
Just, simply, to wake up feeling well.
I used to see myself being physically well all the time, even over the past year since living with cancer. But my vision is getting a bit blurry at the moment. And I must confess that my strong attitude has been weakened after the last, yet another unpleasant incident of waking up in agony and almost being unable to move. Yet again I had to call palliative care unit while still in bed, my GP and my radio oncologist. And yet again I was adviced to get an ambulance to take me to emergency ...
Honestly, it absolutely sucks.
All I want is to be well. Is that too much to ask?
It's been about 18 months on this journey now. And wow, what a journey!
I am mostly pleased with my life, I must say. I don't really have regrets. I appreciate all the lifestyle changes I have made. And all the changes in me that have taken place. I appreciate them all and I wouldn't change it for anything.
I definitely am a much better person, with way more peace and contentment, clarity, empathy, ...
But I am getting tired. So tired. Tired of being physically unwell. Tired of feeling the way I used to imagine to be feeling when I'm in my 80s and not at my age. Tired of bouncing moods caused by all the drugs I'm on... They just don't fit into my new found 'organic' lifestyle.
I know many things I'm going through emotionally at the moment are caused purely by drugs, but that doesn't really matter. What matters is the way I feel. And I don't feel right at the moment. I am in this moment, yes, and there are many things I greatly appreciate, but I can not ignore the ones I greatly dislike. There are just a few too many.
I often think of my beautiful daughter. She is only 5 years old. So young, but yet so in tune with what is going on. Every time she puts on her 5 year old behavior and if I am unwell or I let her know I'm in pain, she changes her act straight away. Instead, she runs to me, gives me a huge, honest hug, cuddles me and kisses me and says: mummy I love you. Or: oh mummy, I wish you were well already...
She is so precious, and she is the main reason and my main motivation to keep going and to pull out the whatever strength there is left somewhere inside of me, even when there's a moment when I am running on empty.
How about you? Who is your main motivation?
Showing posts with label life with cancer. Show all posts
Showing posts with label life with cancer. Show all posts
Saturday, June 16, 2012
Tuesday, May 29, 2012
Are You Driven By Fear or Driven By Love
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?
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?
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?
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
Thursday, April 12, 2012
I have enough! I want my physical body back!
As I am sitting here on the couch, feeling mentally quite peaceful, but tired and not particularly centred, I can't help but notice my bloated belly popping out of my Tshirt...
And in this very moment, I feel I have enough.
This is just not me.
I am a petite, fit, toned and healthy looking 30 something, with thick sandy coloured wavy hair, lush eyelashes, well shaped eyebrows, big round eyes and an oval shaped face...
Not at the moment.
As I am approaching the end of a course of chemotherapy, my body hair has thinned drastically. My hair is 2/3 gone, so are my eyelashes and eyebrows...
Since I have been diagnosed with advanced breast cancer in the bone (spine, ribs & hips), which involves being in constant pain, I have lost all my muscle tone.
I used to love jogging and practicing yoga. I would jog at least 3 times a week and practiced yoga at least twice. I walked a lot. I was out and about, engaged in some sort of physical activity with my daughter almost every day.
In my mid to late thirties, I was physically the fittest and healthiest I have ever been before.
I felt good within myself - physically. I used to like what I saw in the mirror.
Then, last year, as my pain was getting worse, there were many pills added to my daily diet.
Needless to say, they all have side effects. Especially steroids.
And here I am now, with the combination of 18 months of zero physical exercise, about 10 pills of different medications a day, 12 rounds of chemotherapy...
Yes, here I am, with a horribly bloated tummy, looking and feeling like I was 6 months pregnant, with the hair of a balding 50 year old man, ghostly look on my totally rounded moon - face and a very fragile scrawny body...
But yet I look OK, to strangers - or so 'they' say.
Oh, so looking forward to the day, when chemotherapy is finished, painkillers reduced to minimum or gone altogether, my hair back thick and growing, my eyelashes needing to be looked after on daily basis, my body waxed...
And more so, when I get out of bed, put on those brand new looking snickers (I bought about 2 years ago and only used briefly training for 8 km Mothers Day Classic Fundraising Run) and go for a morning jog around this beautiful beach suburb I live in.
And to the day, when I dress up in my yoga gear and join the local yoga group again for weekly sessions...
The down is - I can't book in the next 'fun run' event just yet nor the date to start training or practicing yoga. I have no idea when exactly that time will come.
However, I know it is going to happen! I know, I can feel it and I do not have a doubt! In my mind, it's never gone away, it's just my physical body that needs to catch up somehow, somewhere in the (hopefully very) near future.
Meanwhile, I just have to stay here, within myself, focus on my other bodies, maintain those in the state of contentment, strength, clarity and determination and practice patience, patience, patience and possibly more patience...
How about you? Where are you at? Is your goal hard to be achieved on a mental or physical level? Would love to hear.
And in this very moment, I feel I have enough.
This is just not me.
I am a petite, fit, toned and healthy looking 30 something, with thick sandy coloured wavy hair, lush eyelashes, well shaped eyebrows, big round eyes and an oval shaped face...
Not at the moment.
As I am approaching the end of a course of chemotherapy, my body hair has thinned drastically. My hair is 2/3 gone, so are my eyelashes and eyebrows...
Since I have been diagnosed with advanced breast cancer in the bone (spine, ribs & hips), which involves being in constant pain, I have lost all my muscle tone.
I used to love jogging and practicing yoga. I would jog at least 3 times a week and practiced yoga at least twice. I walked a lot. I was out and about, engaged in some sort of physical activity with my daughter almost every day.
In my mid to late thirties, I was physically the fittest and healthiest I have ever been before.
I felt good within myself - physically. I used to like what I saw in the mirror.
Then, last year, as my pain was getting worse, there were many pills added to my daily diet.
Needless to say, they all have side effects. Especially steroids.
And here I am now, with the combination of 18 months of zero physical exercise, about 10 pills of different medications a day, 12 rounds of chemotherapy...
Yes, here I am, with a horribly bloated tummy, looking and feeling like I was 6 months pregnant, with the hair of a balding 50 year old man, ghostly look on my totally rounded moon - face and a very fragile scrawny body...
But yet I look OK, to strangers - or so 'they' say.
Oh, so looking forward to the day, when chemotherapy is finished, painkillers reduced to minimum or gone altogether, my hair back thick and growing, my eyelashes needing to be looked after on daily basis, my body waxed...
And more so, when I get out of bed, put on those brand new looking snickers (I bought about 2 years ago and only used briefly training for 8 km Mothers Day Classic Fundraising Run) and go for a morning jog around this beautiful beach suburb I live in.
And to the day, when I dress up in my yoga gear and join the local yoga group again for weekly sessions...
The down is - I can't book in the next 'fun run' event just yet nor the date to start training or practicing yoga. I have no idea when exactly that time will come.
However, I know it is going to happen! I know, I can feel it and I do not have a doubt! In my mind, it's never gone away, it's just my physical body that needs to catch up somehow, somewhere in the (hopefully very) near future.
Meanwhile, I just have to stay here, within myself, focus on my other bodies, maintain those in the state of contentment, strength, clarity and determination and practice patience, patience, patience and possibly more patience...
How about you? Where are you at? Is your goal hard to be achieved on a mental or physical level? Would love to hear.
Tuesday, April 3, 2012
The Monstrosity Of Pain
There are two things that have been present in the past few weeks of my life. One of them is pain, the other is crankiness.
I believe they are both here with me to teach me a huge lesson but I have decided to write only about the pain today...
Pain is the one that I dislike the most. It's a feeling that I don't wish upon anyone. Or, is it a feeling at all? What is pain, actually?
It is horrible, it is annoying and irritating. It hurts, stings and burns on a physical level and it overtakes me, totally consumes me, on a mental level. It is most unwelcome thing coming to me with the diagnosis of cancer spreading to the bone. The more I think of it, the more I know it's the actual pain that bothers me, not the cancer...
It's the pain that makes me take painkillers - strong opiates, steroids and occasionally additional medicine for so called 'breakthrough' pain. And they all come with some sort of side effects. From having constant food cravings, mood swings, bloating or constipation (what a choice, hey?!), to the change in my physical appearance (I am now moon-faced!).
I had a good session discussing pain with my mentor and came to the conclusion of trying to just being with it. So I tried. And I still am trying. Through the meditation or just sitting and resting with it. It is hard.
Right now, when I am ok, with my pain level down to 2 out of 10, seems easy and light. However, when one wakes up at 3am with unbearable burning pain up and down the whole leg, from hips to toes, level 11 out of 10, there is no way of just 'being' with it. There is absolutely nothing to do... You top up the painkillers to the max, but it takes at least 1/2h for them to kick in. Meanwhile, you are there, in the middle of the night, in absolute agony, with nothing to do... Nothing but react. Mindfulness, patience, niceness, politeness, everything I aspire to be and practice through the day and every nice piece of me just blows away in the dark. That's when the anger and sadness and bitterness kick in.... And I cry... And I sob... And I wish that, just for few minutes, someone I know would feel the way I feel right then, just so they understand me that little bit better. That tiny little bit. I want to feel empathy in the true form.
Why? Perhaps it is because I don't want people around me to always see me and think of me as being strong. I don't want everyone to always tell me how well I am or how well I handle everything that I'm going through... No! I sometimes need people around me to feel sorry for me, because the truth is, it is hard, sometimes harder than anyone can imagine. And I am not handling it the way I want to. I am not strong. I do suffer. And I suffer a lot. There is nothing easy about living with pain of any sort and there is absolutely nothing easy about living with cancer.
I feel the love of my beautiful man. I feel his frustrations at 3am, trying to help. But there's nothing he can do apart from handing me the 'breakthrough' pills, a heat pack, perhaps holding my hand and listen to me, angrily and desperately sobbing in absolute agony... It must be so hard for him. And yet there I am, wishing I could pass on my pain to him, even if just for few minutes. Does that make me a horrible person? Perhaps. But I don't care. Not at 3am. All I care about is me and all I wish is the pain to go away.
Yes, it's not cancer that I truly want to get rid off, it's the pain.
Luckily, it's not always that way. There are days when all is well and there are most nights that I sleep soundly. But I did hurt my tumors in the hip area on the recent travel for a weekend away, carrying the luggage (stupid me, not having a 'wheelie' suitcase!) and the last few weeks of pain were the price I had to pay.
My pain has now somehow settled. Still there, but not over 5 out of 10, much easier managed. And I am back to being optimistic, seeing the day in the future without painkillers. I know it is achievable and I know it will happen!
Meanwhile, I am learning the hard lesson of living with pain, caused by cancer and yes, I am mindfully working on 'being with it'. But please, oh, please don't mention anything about that particular learning process if I ever wake up at 3am!
I believe they are both here with me to teach me a huge lesson but I have decided to write only about the pain today...
Pain is the one that I dislike the most. It's a feeling that I don't wish upon anyone. Or, is it a feeling at all? What is pain, actually?
It is horrible, it is annoying and irritating. It hurts, stings and burns on a physical level and it overtakes me, totally consumes me, on a mental level. It is most unwelcome thing coming to me with the diagnosis of cancer spreading to the bone. The more I think of it, the more I know it's the actual pain that bothers me, not the cancer...
It's the pain that makes me take painkillers - strong opiates, steroids and occasionally additional medicine for so called 'breakthrough' pain. And they all come with some sort of side effects. From having constant food cravings, mood swings, bloating or constipation (what a choice, hey?!), to the change in my physical appearance (I am now moon-faced!).
I had a good session discussing pain with my mentor and came to the conclusion of trying to just being with it. So I tried. And I still am trying. Through the meditation or just sitting and resting with it. It is hard.
Right now, when I am ok, with my pain level down to 2 out of 10, seems easy and light. However, when one wakes up at 3am with unbearable burning pain up and down the whole leg, from hips to toes, level 11 out of 10, there is no way of just 'being' with it. There is absolutely nothing to do... You top up the painkillers to the max, but it takes at least 1/2h for them to kick in. Meanwhile, you are there, in the middle of the night, in absolute agony, with nothing to do... Nothing but react. Mindfulness, patience, niceness, politeness, everything I aspire to be and practice through the day and every nice piece of me just blows away in the dark. That's when the anger and sadness and bitterness kick in.... And I cry... And I sob... And I wish that, just for few minutes, someone I know would feel the way I feel right then, just so they understand me that little bit better. That tiny little bit. I want to feel empathy in the true form.
Why? Perhaps it is because I don't want people around me to always see me and think of me as being strong. I don't want everyone to always tell me how well I am or how well I handle everything that I'm going through... No! I sometimes need people around me to feel sorry for me, because the truth is, it is hard, sometimes harder than anyone can imagine. And I am not handling it the way I want to. I am not strong. I do suffer. And I suffer a lot. There is nothing easy about living with pain of any sort and there is absolutely nothing easy about living with cancer.
I feel the love of my beautiful man. I feel his frustrations at 3am, trying to help. But there's nothing he can do apart from handing me the 'breakthrough' pills, a heat pack, perhaps holding my hand and listen to me, angrily and desperately sobbing in absolute agony... It must be so hard for him. And yet there I am, wishing I could pass on my pain to him, even if just for few minutes. Does that make me a horrible person? Perhaps. But I don't care. Not at 3am. All I care about is me and all I wish is the pain to go away.
Yes, it's not cancer that I truly want to get rid off, it's the pain.
Luckily, it's not always that way. There are days when all is well and there are most nights that I sleep soundly. But I did hurt my tumors in the hip area on the recent travel for a weekend away, carrying the luggage (stupid me, not having a 'wheelie' suitcase!) and the last few weeks of pain were the price I had to pay.
My pain has now somehow settled. Still there, but not over 5 out of 10, much easier managed. And I am back to being optimistic, seeing the day in the future without painkillers. I know it is achievable and I know it will happen!
Meanwhile, I am learning the hard lesson of living with pain, caused by cancer and yes, I am mindfully working on 'being with it'. But please, oh, please don't mention anything about that particular learning process if I ever wake up at 3am!
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?
Tuesday, February 28, 2012
The Meltdown
I had a lovely weekend and felt good on a nice summery Monday morning. After dropping off my daughter at school, I needed to do a blood test, which is necessary a day prior my next round of chemotherapy. I had a 'chemo break' last week and was about to start the new (fourth) cycle. Each cycle consists of 3 rounds and 1 week break and I am to have 6 in total. So I am now midway. Great, the countdown begins.
Having chemo is not by any means a good thing. No matter how smooth or well tolerated chemo is, it is an extremely unpleasant experience. My chemo is an IV form and even though it only takes about 45 min to administer, it is not nice to say the least. You sit in a neon lit room of the clinic with many other cancer patients and do nothing but wait until it all flows through your veins. You also get some 'extras', either pills or shots for side effects. You are basically filled up with a variety of legal synthetic drugs.
4 years ago, all of the drugs made me extremely sick for the first 24 hours. In fact so sick, I couldn't share the room with anyone, not even with my daughter or any family member. I couldn't talk, eat, drink or do anything but curl up in bed, in the dark and try to sleep it off. Or else I would have been extremely nauseous.
This time around is much better. Different, newer drugs and much lighter immediate side effects. I feel tired, slightly light headed, looking pale, but still able to do all normal chores like picking up my girl from school and taking her to ballet class, having dinner etc. All good from that part.
But yet, it doesn't feel nowhere near pleasant. I would have never add chemo to my 'to do list'. Honestly, it absolutely sucks (excuse my language) and just the thought of it irritates me.
Anyhow, a day prior each chemo, I need a blood test for Doctor to see my blood and my organs (like kidneys) are well enough to handle the chemicals...
So off I went.
I started really disliking blood tests and needles generally. I've been having way too many over the past couple months. And I think my veins can tell. They seem to go on strike every time I enter the Pathology room, or the Vitamin C room, where I'm getting my weekly high doses of Vitamin C through IV. The nurses are having serious troubles finding my veins.
Yesterday morning, all bright and early, happened again. The nurse missed the vein twice. And it was painful. But more so, it was annoying me. All of a sudden I started feeling physically sick, I thought I was going to faint. I got very hot and covered in sweat. Almost shaky. All I wanted is to get out of there.
I had two nurses giving me attention, wanting to try again... But all I could do was walk out and skip the blood test. I had two band aids on both arms, caused by unsuccessful trials.
I felt physically sick and thought I would faint.
Mentally, I could feel the whole lot of unpleasant emotions arising... Stronger and stronger all the stuff started to come out of somewhere deep inside, right out through my body, to my mind and out of my eyes and through my mouth....
Just as I reached the car, the total meltdown began.
I phoned my man. Out came swear words galore, out came the tears pouring, out came 'why me's, 'not fair's, and more and more F words (*I am not the person who swears, ever, no F words nor similar are in my vocabulary).... They all just came out flooding. Out of, what seemed nowhere... But yet it all came from somewhere deep inside of me. It was a moment of unpleasant emotions and it came pouring out.
When we practice mindfulness, unpleasant emotions like anger, become just another emotion to respond to, not to live in. We learn to observe, not to react.
But yet I reacted. I reacted wholeheartedly, crying, yelling, swearing, almost abusing my innocent man on the phone.
And this is what I've learned:
Practice of mindfulness is a lengthy process and no matter how long you manage to stay in 'the good place', it is (unfortunately) not the destination, but a life long journey, which requires one step at a time. Many steps are easy, and get even easier with practice, as you get 'fitter'. You are walking straight line, flat, relaxed pace. Until all of a sudden, you reach an extremely steep hill, or a huge rock to climb, a fence to jump over, or a slippery wet part, or an icy cold patch, a dangerous curve or perhaps just a little sharp stone...
Each step you take is important.
It's not about trying to control the actual journey, but keeping the determination to stay on the path no matter what comes your way, keeping the pace comfortable, safe, accepting whatever comes your way, no matter how unpleasant the circumstances and emotions associated with experience are.
So I had a meltdown. A complete meltdown I have not expected to have. It all came out, which obviously had to, as it was there, somewhere. I felt much lighter afterwards.
And I didn't let the meltdown consume my whole existence. I didn't drag it on and on. It came all of a sudden, I let it all out, I was a bit surprised, shed few extra tears during the day and wondered where did it all come from? But I also sat down for half an hour, in peace and quite, practicing mindfulness meditation to calm my mind and gain some clarity, mostly on where and why did it all happen.
I didn't get the answer, but did calm down greatly. And I didn't continue trying to analyse it or catastrophise it or making up stories around and about it.
Although I am a complete beginner in the vastness of the mindfulness practice, I did notice a difference in dealing with the meltdown, comparing to my past, pre-cancer life. The best part is, I now feel much lighter and calmer. And yet again, I am at peace.
How about you? How do you deal with the meltdowns? How do you cross the obstacles? Would love to hear!
Having chemo is not by any means a good thing. No matter how smooth or well tolerated chemo is, it is an extremely unpleasant experience. My chemo is an IV form and even though it only takes about 45 min to administer, it is not nice to say the least. You sit in a neon lit room of the clinic with many other cancer patients and do nothing but wait until it all flows through your veins. You also get some 'extras', either pills or shots for side effects. You are basically filled up with a variety of legal synthetic drugs.
4 years ago, all of the drugs made me extremely sick for the first 24 hours. In fact so sick, I couldn't share the room with anyone, not even with my daughter or any family member. I couldn't talk, eat, drink or do anything but curl up in bed, in the dark and try to sleep it off. Or else I would have been extremely nauseous.
This time around is much better. Different, newer drugs and much lighter immediate side effects. I feel tired, slightly light headed, looking pale, but still able to do all normal chores like picking up my girl from school and taking her to ballet class, having dinner etc. All good from that part.
But yet, it doesn't feel nowhere near pleasant. I would have never add chemo to my 'to do list'. Honestly, it absolutely sucks (excuse my language) and just the thought of it irritates me.
Anyhow, a day prior each chemo, I need a blood test for Doctor to see my blood and my organs (like kidneys) are well enough to handle the chemicals...
So off I went.
I started really disliking blood tests and needles generally. I've been having way too many over the past couple months. And I think my veins can tell. They seem to go on strike every time I enter the Pathology room, or the Vitamin C room, where I'm getting my weekly high doses of Vitamin C through IV. The nurses are having serious troubles finding my veins.
Yesterday morning, all bright and early, happened again. The nurse missed the vein twice. And it was painful. But more so, it was annoying me. All of a sudden I started feeling physically sick, I thought I was going to faint. I got very hot and covered in sweat. Almost shaky. All I wanted is to get out of there.
I had two nurses giving me attention, wanting to try again... But all I could do was walk out and skip the blood test. I had two band aids on both arms, caused by unsuccessful trials.
I felt physically sick and thought I would faint.
Mentally, I could feel the whole lot of unpleasant emotions arising... Stronger and stronger all the stuff started to come out of somewhere deep inside, right out through my body, to my mind and out of my eyes and through my mouth....
Just as I reached the car, the total meltdown began.
I phoned my man. Out came swear words galore, out came the tears pouring, out came 'why me's, 'not fair's, and more and more F words (*I am not the person who swears, ever, no F words nor similar are in my vocabulary).... They all just came out flooding. Out of, what seemed nowhere... But yet it all came from somewhere deep inside of me. It was a moment of unpleasant emotions and it came pouring out.
When we practice mindfulness, unpleasant emotions like anger, become just another emotion to respond to, not to live in. We learn to observe, not to react.
But yet I reacted. I reacted wholeheartedly, crying, yelling, swearing, almost abusing my innocent man on the phone.
And this is what I've learned:
Practice of mindfulness is a lengthy process and no matter how long you manage to stay in 'the good place', it is (unfortunately) not the destination, but a life long journey, which requires one step at a time. Many steps are easy, and get even easier with practice, as you get 'fitter'. You are walking straight line, flat, relaxed pace. Until all of a sudden, you reach an extremely steep hill, or a huge rock to climb, a fence to jump over, or a slippery wet part, or an icy cold patch, a dangerous curve or perhaps just a little sharp stone...
Each step you take is important.
It's not about trying to control the actual journey, but keeping the determination to stay on the path no matter what comes your way, keeping the pace comfortable, safe, accepting whatever comes your way, no matter how unpleasant the circumstances and emotions associated with experience are.
So I had a meltdown. A complete meltdown I have not expected to have. It all came out, which obviously had to, as it was there, somewhere. I felt much lighter afterwards.
And I didn't let the meltdown consume my whole existence. I didn't drag it on and on. It came all of a sudden, I let it all out, I was a bit surprised, shed few extra tears during the day and wondered where did it all come from? But I also sat down for half an hour, in peace and quite, practicing mindfulness meditation to calm my mind and gain some clarity, mostly on where and why did it all happen.
I didn't get the answer, but did calm down greatly. And I didn't continue trying to analyse it or catastrophise it or making up stories around and about it.
Although I am a complete beginner in the vastness of the mindfulness practice, I did notice a difference in dealing with the meltdown, comparing to my past, pre-cancer life. The best part is, I now feel much lighter and calmer. And yet again, I am at peace.
How about you? How do you deal with the meltdowns? How do you cross the obstacles? Would love to hear!
Thursday, February 23, 2012
Happy Birthday To Me
It was my birthday yesterday.
Celebrations have changed a lot since I've been living with cancer. Not only that my lifestyle and diet have changed (mostly vegan, sugar free, alcohol free... meaning no birthday cake nor birthday drinks), my mindset is different, too.
Looking few years back, I was quite devastated turning 30. I felt old, or perhaps, mature, an adult... I felt like I have hit the stage of life where there's no more excuses to be young and silly, but needing to get all serious about life, needing to know what I want, plan it all out - married, career, house by 34, kids by 36 etc
Little did I know....
After my first diagnosis and by the end of treatments, just a single thought of being 'trapped' in a mortgage almost made me sick. My motto has changed to 'I work to live' (definitely not live to work!). Life (to me) represented one holiday after another. Having one child seemed sufficient. I felt blessed not needing to plan bigger family and relieved not needing to feel 'guilty' to only have one child, since I had 'a good excuse'...
It's only now, 4 years later, that I catch myself thinking about why do I feel like I need an excuse? Or to explain myself to people I meet about:
What is my problem? Why do I let myself be influenced by the 'silent rules of society', when, on the other hand, I claim not to care what other people think about me...
Yes, although I feel like I am in a good place, I feel obliged needing to explain to people, somehow justify my life, my actions and my decisions...Why?
Even after spending most of the past year soul searching, focusing on my mental and emotional healing and spiritual growth, there are still so many parts of me that need to be looked into. No matter how good, content and confident I feel, there are still many complex, slightly unpleasant feelings arising, that I am willing to explore.
There is so much more to learn about who I am, what is my place? What is it, truly, that makes me and keeps me in that 'good place'? In a place, where the superficial norms of society loose their meaning and have no attachments, where I confidently meet and communicate to everyone around me without feeling any pressures whatsoever. Move ligthly, think and make decisions with absolute clarity and act completely and only from the depth of my heart and soul, regardless of my health condition or any superficial barriers I may carry in my mind.
As I turned 39, I honestly don't feel the age nor do I care about it. In fact, in many ways, I feel exactly the same I felt when I was in my 20s. But yet things are very much different. I am different.
Have I achieved what I was meaning to by this age? No.
Have I ever thought I would have had cancer twice in my thirties? Of course not.
Have I ever thought I wasn't going to eat meat, or drink alcohol or not have a piece of cake, not even on my birthday? Absolutely not.
Do I have any regrets? Not a single one!
So, there we are. The unpredictability of the fragile life... The changes we, humans, can make. The actions we take are enormous. The strength we carry inside is unimaginable. Getting older, wiser, to mature and to be willing to change, is extremely empowering.
And as I felt devastated turning 30, I now feel totally blessed to be here to be able to turn 39 and looking forward to 40 and 50 and 60... and 70 and ... oh my oh my, there will be the biggest party on the planet earth when I turn 80 in 2053!
No middle age crisis here, no botox, no collagen injections planned, nor face lifts or plastic surgery... I am embracing every single moment of getting older, just because I am well enough to be able to!
How about you?
Celebrations have changed a lot since I've been living with cancer. Not only that my lifestyle and diet have changed (mostly vegan, sugar free, alcohol free... meaning no birthday cake nor birthday drinks), my mindset is different, too.
Looking few years back, I was quite devastated turning 30. I felt old, or perhaps, mature, an adult... I felt like I have hit the stage of life where there's no more excuses to be young and silly, but needing to get all serious about life, needing to know what I want, plan it all out - married, career, house by 34, kids by 36 etc
Little did I know....
It's only now, 4 years later, that I catch myself thinking about why do I feel like I need an excuse? Or to explain myself to people I meet about:
- having only one child
- not owning a house
- not drinking
- not eating meat, dairy or sugar
- having thin hair...
What is my problem? Why do I let myself be influenced by the 'silent rules of society', when, on the other hand, I claim not to care what other people think about me...
Yes, although I feel like I am in a good place, I feel obliged needing to explain to people, somehow justify my life, my actions and my decisions...Why?
Even after spending most of the past year soul searching, focusing on my mental and emotional healing and spiritual growth, there are still so many parts of me that need to be looked into. No matter how good, content and confident I feel, there are still many complex, slightly unpleasant feelings arising, that I am willing to explore.
There is so much more to learn about who I am, what is my place? What is it, truly, that makes me and keeps me in that 'good place'? In a place, where the superficial norms of society loose their meaning and have no attachments, where I confidently meet and communicate to everyone around me without feeling any pressures whatsoever. Move ligthly, think and make decisions with absolute clarity and act completely and only from the depth of my heart and soul, regardless of my health condition or any superficial barriers I may carry in my mind.
Have I achieved what I was meaning to by this age? No.
Have I ever thought I would have had cancer twice in my thirties? Of course not.
Have I ever thought I wasn't going to eat meat, or drink alcohol or not have a piece of cake, not even on my birthday? Absolutely not.
Do I have any regrets? Not a single one!
So, there we are. The unpredictability of the fragile life... The changes we, humans, can make. The actions we take are enormous. The strength we carry inside is unimaginable. Getting older, wiser, to mature and to be willing to change, is extremely empowering.
No middle age crisis here, no botox, no collagen injections planned, nor face lifts or plastic surgery... I am embracing every single moment of getting older, just because I am well enough to be able to!
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....
Wednesday, November 9, 2011
How Are You Today?
I am sure we all loose count on how many times during one day we are asked the 'how are you'? Or how many times we ask someone.
From random people we bump into or somehow cross paths with (taxi / bus drivers, counter service at local cafe / shop...) or people closer to us such as our work colleagues, to people we love -our dear friends and loving family members.
It is not a big deal and it usually goes something like this:
'Hi, how are you?'
'Good, thanks, and you?'
We most commonly don't expect the answer or really care to hear it and reply, perhaps start the conversation... It is quite a superficial, but yet polite way of communicating in today's society.
Unfortunately (but sometimes fortunately) it all changes when you live affected by cancer.
Random superficial 'how are you's are sort of still the same.... Not a great deal. No expectations on the answer. But when it comes to people you know, they mostly really sincerely wish to know how you are. I am not sure why, but they ask 'how are you' in a different way. It is almost like they are realising that it generally doesn't mean much, but in our case, living with cancer, most people actually expect and wait to get the answer. If they haven't seen me in a while (like my work colleagues, business colleagues, brief friends etc), they ask that same question my partner: 'How is Tina?' over and over again. Some every day, others weekly... He gets quite tired answering and his usual answer is 'Good'
As for myself, it is not that simple. The simple answer 'Good' is just not enough.
Very early this year, soon after my secondary diagnosis, I have made a decision of being truly honest to myself in the way I feel. And once you are honest to yourself, you find it is quite complicated and simple 'good', 'not bad', 'not too good' etc just wouldn't do for an answer.
Living with my type of cancer, which is metastasised in the bones, is a painful experience. So automatically, you are never really good (basically never as good as I felt 18months ago when I was super fit and full of energy). At least not good in a physical sense.
There are days I feel horribly in pain and then there are days (like today) straight after acupuncture when the pain is minimal and the painkillers I am on actually are doing their job just fine. Yet I physically feel stiff, weak, inflexible and slow.
But luckily there is much more to how we feel than just a physical aspect. There are also emotional and mental well beings. And in those two, I very often feel much better than I've ever felt before.
If I compare my mental and emotional present feeling to 18 months ago, it is almost like I am a different person. I now generally feel at peace, filled with clarity, confidence and love to life, myself and people near me. Although tired, I am generally happy and content. And when I get upset, it is a very superficial feeling that passes quickly and not the deep seeded anger that used to consume me and made me dwell in it for hours.
When I feel doubts or fears or any other unpleasant emotions, they seem to be sensed and recognised creeping out from somewhere in the back corner and dealt with way before they completely take me over, like they used to.
Practising being honest to myself has tought me the real meaning of being positive. Because only when you are honest to yourself, you recognise those 'unpleasant' emotions early enough to deal with them in a positive manner and don't let them to completely consume you.
Another pact I did with myself early this year is to completely open to myself, the universe and to selected people around me. It feels so good!
So next time you meet me or call me and ask me: 'How are you today?', you might get the honest & open answer which might sound something like this:
'Generally, I am quite well, thank you. Physically, I am in pain, today around my lower back, not much, but it's still there. I do feel quite weak, very inflexible and stiff though, but emotionally content, with a lot of mental clarity on what to do next. But mostly, I am very excited about an early family dinner catch up later on.'
And 'How are you?'
From random people we bump into or somehow cross paths with (taxi / bus drivers, counter service at local cafe / shop...) or people closer to us such as our work colleagues, to people we love -our dear friends and loving family members.
It is not a big deal and it usually goes something like this:
'Hi, how are you?'
'Good, thanks, and you?'
We most commonly don't expect the answer or really care to hear it and reply, perhaps start the conversation... It is quite a superficial, but yet polite way of communicating in today's society.
Unfortunately (but sometimes fortunately) it all changes when you live affected by cancer.
Random superficial 'how are you's are sort of still the same.... Not a great deal. No expectations on the answer. But when it comes to people you know, they mostly really sincerely wish to know how you are. I am not sure why, but they ask 'how are you' in a different way. It is almost like they are realising that it generally doesn't mean much, but in our case, living with cancer, most people actually expect and wait to get the answer. If they haven't seen me in a while (like my work colleagues, business colleagues, brief friends etc), they ask that same question my partner: 'How is Tina?' over and over again. Some every day, others weekly... He gets quite tired answering and his usual answer is 'Good'
As for myself, it is not that simple. The simple answer 'Good' is just not enough.
Very early this year, soon after my secondary diagnosis, I have made a decision of being truly honest to myself in the way I feel. And once you are honest to yourself, you find it is quite complicated and simple 'good', 'not bad', 'not too good' etc just wouldn't do for an answer.
Living with my type of cancer, which is metastasised in the bones, is a painful experience. So automatically, you are never really good (basically never as good as I felt 18months ago when I was super fit and full of energy). At least not good in a physical sense.
There are days I feel horribly in pain and then there are days (like today) straight after acupuncture when the pain is minimal and the painkillers I am on actually are doing their job just fine. Yet I physically feel stiff, weak, inflexible and slow.
But luckily there is much more to how we feel than just a physical aspect. There are also emotional and mental well beings. And in those two, I very often feel much better than I've ever felt before.
If I compare my mental and emotional present feeling to 18 months ago, it is almost like I am a different person. I now generally feel at peace, filled with clarity, confidence and love to life, myself and people near me. Although tired, I am generally happy and content. And when I get upset, it is a very superficial feeling that passes quickly and not the deep seeded anger that used to consume me and made me dwell in it for hours.
When I feel doubts or fears or any other unpleasant emotions, they seem to be sensed and recognised creeping out from somewhere in the back corner and dealt with way before they completely take me over, like they used to.
Practising being honest to myself has tought me the real meaning of being positive. Because only when you are honest to yourself, you recognise those 'unpleasant' emotions early enough to deal with them in a positive manner and don't let them to completely consume you.
Another pact I did with myself early this year is to completely open to myself, the universe and to selected people around me. It feels so good!
So next time you meet me or call me and ask me: 'How are you today?', you might get the honest & open answer which might sound something like this:
'Generally, I am quite well, thank you. Physically, I am in pain, today around my lower back, not much, but it's still there. I do feel quite weak, very inflexible and stiff though, but emotionally content, with a lot of mental clarity on what to do next. But mostly, I am very excited about an early family dinner catch up later on.'
And 'How are you?'
Wednesday, August 31, 2011
Life Is Beautiful
Funny how our moods change, our minds play up and send us such different massages, day in, day out....
It's a beautiful day today! I feel so happy. I appreciate each and every moment of my existance.
It makes me wonder what triggered the cancer thoughts to go on vacations?
Is it the meditation I managed to consistently practice for the past few days (although I fell asleep 15 minutes in - every time)?
Or is it a visit to my 'Guru', which filled me up with new energy, gave me the clarity into the next couple of month of healing journey?
Perhaps it is a lovely hour spent with my Yoga Teacher, a very wise and interesting woman with amazing stories and great energies?
Maybe it's my daughter, who has been in an extremly joyfull mood for the past couple of days....
Or the beginning of spring?
Whatever it is, it is in me, it feels great and I am not letting it go! I will be holding onto this feeling, embrace it completely and nurture it as long as possible - never mind the lumps, cracked ribs, muscle spasms...
I am content, I am in a great place, filled with peace and clarity.
Life is beautiful!
It's a beautiful day today! I feel so happy. I appreciate each and every moment of my existance.
It makes me wonder what triggered the cancer thoughts to go on vacations?
Is it the meditation I managed to consistently practice for the past few days (although I fell asleep 15 minutes in - every time)?
Or is it a visit to my 'Guru', which filled me up with new energy, gave me the clarity into the next couple of month of healing journey?
Perhaps it is a lovely hour spent with my Yoga Teacher, a very wise and interesting woman with amazing stories and great energies?
Maybe it's my daughter, who has been in an extremly joyfull mood for the past couple of days....
Or the beginning of spring?
Whatever it is, it is in me, it feels great and I am not letting it go! I will be holding onto this feeling, embrace it completely and nurture it as long as possible - never mind the lumps, cracked ribs, muscle spasms...
I am content, I am in a great place, filled with peace and clarity.
Life is beautiful!
Monday, August 22, 2011
Fight against cancer? Or is it?
As a person living with cancer, I can tell the world, it is not a battle, or a fight! It is a life with cancer. Life out of comfort zone, greatly, way out!
Battle is negative, so is fight. Life is not, or at least, it shouldn't be. Life is beautiful, and we shouldn't give cancer the power to change that.
Cancer is a disease. It is a state you are in either temporarly, short term, long term or forever.
I can't talk in the name of all, but I can tell you I am not in the fight nor a battle against it.
I accept the disease, I am actively involved in managing it, hopefully getting rid of it in the nearest possible future, but I am not fighting. No, I am not being hostile or angry. In fact, I am quite opposite. I am learning to be and stay as positive as possible. And I am doing it with love.
I do get slightly annoyed when people describe someone dying of cancer as 'losing the battle'. What does that mean? Is he / she a loser?
I like to think it is a choice of each individual to accept it or not, making decisions on life or death. Consciously or subconsciously.
Cancer is an extremly difficult and complex, multifactorial disease. When associated with pain (which is often the case), is even harder. To keep up hope, belief of getting better one day, the determination, discipline and mostly love to life, which are to my opinion essentials for survival, it is an extremly hard job. And the journey is life long and very unpredictable.
Unfortunately, there is still a general belief in the world that cancer kills, which causes enormous fear. And fear is the one that usually kills, not cancer.
To top it all up, there is the conventional medicine with their statistics, which often cement the fear and take away hope in many cases. And so many people start believing they have a 'terminal' cancer, a year, or even just few months to live etc and before you know it they fall into the statistics and die.
But yet I wouldn't describe it as 'losing the battle'. I prefer to describe it as letting go, finding peace, which is what happens in either surviving or dying anyway. It is very often much easier to find peace in death and there is absolutely nothing negative about it.
I recently had a conversation with my mother-in-law. She (as well as most of the world) desperately wants the world to find the 'cure for cancer' and wonders why it hasn't happened yet. It's all in best intention.
The fantastically amazing good news is - there is a cure for cancer!
It is just that the common world doesn't see it or believe it, as it doesn't come in one little pill. And it never will! It is an extremly complex disease which can only be treated hollistically.
There is no easy way out. And it is extremly difficult to embrace such state, learn to love to live with it, take control and change your life accordingly.
So, yes, that's why I dislike the frases like 'battle and/or fight against cancer', because it's got absolutely nothing to do with that. It's all about acceptance, embrace and finally, love.
Wish me good luck!
Battle is negative, so is fight. Life is not, or at least, it shouldn't be. Life is beautiful, and we shouldn't give cancer the power to change that.
Cancer is a disease. It is a state you are in either temporarly, short term, long term or forever.
I can't talk in the name of all, but I can tell you I am not in the fight nor a battle against it.
I accept the disease, I am actively involved in managing it, hopefully getting rid of it in the nearest possible future, but I am not fighting. No, I am not being hostile or angry. In fact, I am quite opposite. I am learning to be and stay as positive as possible. And I am doing it with love.
I do get slightly annoyed when people describe someone dying of cancer as 'losing the battle'. What does that mean? Is he / she a loser?
I like to think it is a choice of each individual to accept it or not, making decisions on life or death. Consciously or subconsciously.
Cancer is an extremly difficult and complex, multifactorial disease. When associated with pain (which is often the case), is even harder. To keep up hope, belief of getting better one day, the determination, discipline and mostly love to life, which are to my opinion essentials for survival, it is an extremly hard job. And the journey is life long and very unpredictable.
Unfortunately, there is still a general belief in the world that cancer kills, which causes enormous fear. And fear is the one that usually kills, not cancer.
To top it all up, there is the conventional medicine with their statistics, which often cement the fear and take away hope in many cases. And so many people start believing they have a 'terminal' cancer, a year, or even just few months to live etc and before you know it they fall into the statistics and die.
But yet I wouldn't describe it as 'losing the battle'. I prefer to describe it as letting go, finding peace, which is what happens in either surviving or dying anyway. It is very often much easier to find peace in death and there is absolutely nothing negative about it.
I recently had a conversation with my mother-in-law. She (as well as most of the world) desperately wants the world to find the 'cure for cancer' and wonders why it hasn't happened yet. It's all in best intention.
The fantastically amazing good news is - there is a cure for cancer!
It is just that the common world doesn't see it or believe it, as it doesn't come in one little pill. And it never will! It is an extremly complex disease which can only be treated hollistically.
There is no easy way out. And it is extremly difficult to embrace such state, learn to love to live with it, take control and change your life accordingly.
So, yes, that's why I dislike the frases like 'battle and/or fight against cancer', because it's got absolutely nothing to do with that. It's all about acceptance, embrace and finally, love.
Wish me good luck!
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