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?
Friday, May 18, 2012
Friday, May 11, 2012
Swimming In The Pond Of Doubts
Just as every night, I was on Twitter last night. @TinaVis is my Twitter ID.
I came across this article from the blog of Karen Pendy, a beautiful, positive and happy young woman, who recently passed away at the age of 37, from advanced breast cancer which had spread to her brain...
To some of you, who may have read my previous posts, the story of tumors that had spread into brain sounds familiar. Yes. I also was faced with that very same diagnosis. Interestingly, very similar age, too!
Needless to say, reading about her passing only 5 months after the diagnosis, left me slightly overwhelmed. It made me feel sad, a bit disappointed, a bit scared and definitely doubtful.
On the other hand, it did reinforce my positivity, since my scan last November showed my brain as all clear and I am still here on planet Earth, feeling well and getting better each and every day.
I know my prognosis is not bright, but I am filled with hope. And I know I am not the average person who falls into statistics.
Not only that... I strongly believe in the power of mind and my mind is telling me I am a long term survivor. Long term is considered 10+ years in the cancer world and I am convinced I can (and I will) achieve that.
But my hope is telling me I will be around for much longer, to see my beautiful (now 5 year old) daughter grow up and live fulfilling adult life, to grow old together with my beautiful man, to travel the world, to inspire people, to accomplish many things I have set myself to accomplish...
A month ago, or even a week ago, I would have said, there is no doubt about it... However, after reading the post last night, the doubt crept up on me. I woke up my man, started the 'midnight' conversation and cried out the fears. But the doubts stayed. Same old, same old...
What if I'm fooling myself?
What if my mind is tricking me?
What if my brain tumors come back?
What if my Doctors say: 'there's nothing else we can do' ?
Has anyone ever survived for more than 5 years after brain mets were diagnosed? Anyone???
Am I lucky enough to be that one of the very rare few (if there are any at all)?
Am I disillusioned?
And the list goes on...
I am swimming in the pond of doubts.
All I need now from myself is clarity and all I want from others is the belief and encouragement.
I will gain the clarity, I know how, but I am asking you all to send some belief and encouragement my way.
And I will be forever grateful.
Love to you all x
I came across this article from the blog of Karen Pendy, a beautiful, positive and happy young woman, who recently passed away at the age of 37, from advanced breast cancer which had spread to her brain...
To some of you, who may have read my previous posts, the story of tumors that had spread into brain sounds familiar. Yes. I also was faced with that very same diagnosis. Interestingly, very similar age, too!
Needless to say, reading about her passing only 5 months after the diagnosis, left me slightly overwhelmed. It made me feel sad, a bit disappointed, a bit scared and definitely doubtful.
On the other hand, it did reinforce my positivity, since my scan last November showed my brain as all clear and I am still here on planet Earth, feeling well and getting better each and every day.
I know my prognosis is not bright, but I am filled with hope. And I know I am not the average person who falls into statistics.
Not only that... I strongly believe in the power of mind and my mind is telling me I am a long term survivor. Long term is considered 10+ years in the cancer world and I am convinced I can (and I will) achieve that.
But my hope is telling me I will be around for much longer, to see my beautiful (now 5 year old) daughter grow up and live fulfilling adult life, to grow old together with my beautiful man, to travel the world, to inspire people, to accomplish many things I have set myself to accomplish...
A month ago, or even a week ago, I would have said, there is no doubt about it... However, after reading the post last night, the doubt crept up on me. I woke up my man, started the 'midnight' conversation and cried out the fears. But the doubts stayed. Same old, same old...
What if I'm fooling myself?
What if my mind is tricking me?
What if my brain tumors come back?
What if my Doctors say: 'there's nothing else we can do' ?
Has anyone ever survived for more than 5 years after brain mets were diagnosed? Anyone???
Am I lucky enough to be that one of the very rare few (if there are any at all)?
Am I disillusioned?
And the list goes on...
I am swimming in the pond of doubts.
All I need now from myself is clarity and all I want from others is the belief and encouragement.
I will gain the clarity, I know how, but I am asking you all to send some belief and encouragement my way.
And I will be forever grateful.
Love to you all x
Tuesday, May 1, 2012
Chemotherapy - oh how I dislike you!
I had the second round of the fifth cycle of chemotherapy today. Initially, I was going to have four cycles. Then to be re-assessed and prescribed another two to five rounds if needed. However, I had a couple of lengthy four weeks breaks in between (instead of just one week), that I decided to take myself, so I tailored my treatment by myself, without Doctor's consent. Gutsy, hey?!?
Since I've already had two lots of chemotherapy four years ago, I knew taking breaks doesn't make a difference to the whole treatment regime. Chemotherapy is such powerful and poisonous thing, it stays in your system for years.
Since diagnosed for the second time in December 2010, chemotherapy was the one and only most threatening thing for me next to the possibility of dying. The fear of death first, chemotherapy the close second. It was the thing I decided not to ever experience again. It is indescribably horrid. And unless you have experienced having chemotherapy yourself, you would not have a clue how horrid it is. Everything. From the actual place where you sit to get your chemotherapy drugs administered, the process of it, the all sickly looking people around you (no offence, but mostly older by at least 20 years in my case!), the lights, the smell, the outfits that chemotherapy nurses wear (which look like they are dealing with the nuclear weapon), the actual process of waiting for the poisonous liquid to flow through the veins, all the pills for possible side effects... It is all just plain horrid and it feels wrong. On so many levels.
I was postponing my chemotherapy until even after I had 5 tumors removed from my brain in July 2011, all the way to November 2011, when my vertebrae collapsed the second time in a year and pretty much every single Doctor (the total of five!) told me to have a go or else I could end up in a wheelchair...
So I listened and I opened myself to it.
Needless to say, on the night before the first round of the first cycle of chemotherapy, I felt extremely nervous, irritated and stressed. I pretty much couldn't do anything. To try and practice mindfulness seemed impossible. However I did think of an excellent exercise called 'Inner Peace' I read about in the book called The Mind That Changes Everything. It is a visualisation meditation which can help you find the inner peace under most irritating circumstances.
And the most amazing thing happened.
As I was led into the exercise (by my loving man), an amazing bright light shone all over me. It was strong, warm and extremely powerful. It felt totally safe to be surrounded by it. And as it shone, it started shrinking, closing in on me, closer and closer, until it went inside of me and all over my body, shrinking and shrinking, ending up inside my heart, a powerful, warm light shining... Inside me. I felt calm, safe and 100% certain all is as it is supposed to be. I am doing the right thing.
My trip to the chemotherapy session the next day was accompanied by peace and all was feeling right, smooth and healing. Even my lumps have visibly started shrinking in the two weeks afterwards. And when my hair started falling out, it only thinned and not fell out completely...
But then, after the second cycle , I had a meltdown and hit the wall. The lumps stopped shrinking, I started finding it very hard to be 'embracing' chemotherapy and the feeling of it being horrid came back...
That horrible hostile feeling hasn't left since. If anything, it intensified.
Today, as I was sitting in the waiting room for way too long, my thoughts started playing up. I wanted it to be all finished. I hated being there. I couldn't stand sitting there, getting that horrid poison into my veins, possibly for the second last time ever, but still...
My check up (including the full body bone scan to assess the progress of the treatment) is approaching and I started questioning everything.
What if all these didn't work?
I still have the same amount of visible lumps. They aren't any bigger, but I am not so sure if they've gotten any smaller. I am back on the same dose of pain medication I was at the beginning of chemotherapy, while it should have been reduced by now... I am mentally not at that peaceful place I was at before I started chemotherapy and my physical body has yet again been poisoned, completely, by some horribly heavy drugs, which are having numerous side effects (and possibly no benefits) and my body has even changed visibly in the shape. Some extremely serious things are happening!
I had another mini meltdown.
I took off, sat in the car and cried out loud. I felt sorry for myself. I questioned the universe yet again: why me???
But the mini meltdown finished fast. I went in, had my chemo and I'm coming back next Tuesday for (what I decided to be) the last one (possibly ever!), regardless of the results of my scan.
I know there are many other options out there for me to explore, pursue and embrace if I have to.
Since I've already had two lots of chemotherapy four years ago, I knew taking breaks doesn't make a difference to the whole treatment regime. Chemotherapy is such powerful and poisonous thing, it stays in your system for years.
Since diagnosed for the second time in December 2010, chemotherapy was the one and only most threatening thing for me next to the possibility of dying. The fear of death first, chemotherapy the close second. It was the thing I decided not to ever experience again. It is indescribably horrid. And unless you have experienced having chemotherapy yourself, you would not have a clue how horrid it is. Everything. From the actual place where you sit to get your chemotherapy drugs administered, the process of it, the all sickly looking people around you (no offence, but mostly older by at least 20 years in my case!), the lights, the smell, the outfits that chemotherapy nurses wear (which look like they are dealing with the nuclear weapon), the actual process of waiting for the poisonous liquid to flow through the veins, all the pills for possible side effects... It is all just plain horrid and it feels wrong. On so many levels.
I was postponing my chemotherapy until even after I had 5 tumors removed from my brain in July 2011, all the way to November 2011, when my vertebrae collapsed the second time in a year and pretty much every single Doctor (the total of five!) told me to have a go or else I could end up in a wheelchair...
So I listened and I opened myself to it.
Needless to say, on the night before the first round of the first cycle of chemotherapy, I felt extremely nervous, irritated and stressed. I pretty much couldn't do anything. To try and practice mindfulness seemed impossible. However I did think of an excellent exercise called 'Inner Peace' I read about in the book called The Mind That Changes Everything. It is a visualisation meditation which can help you find the inner peace under most irritating circumstances.
And the most amazing thing happened.
As I was led into the exercise (by my loving man), an amazing bright light shone all over me. It was strong, warm and extremely powerful. It felt totally safe to be surrounded by it. And as it shone, it started shrinking, closing in on me, closer and closer, until it went inside of me and all over my body, shrinking and shrinking, ending up inside my heart, a powerful, warm light shining... Inside me. I felt calm, safe and 100% certain all is as it is supposed to be. I am doing the right thing.
My trip to the chemotherapy session the next day was accompanied by peace and all was feeling right, smooth and healing. Even my lumps have visibly started shrinking in the two weeks afterwards. And when my hair started falling out, it only thinned and not fell out completely...
But then, after the second cycle , I had a meltdown and hit the wall. The lumps stopped shrinking, I started finding it very hard to be 'embracing' chemotherapy and the feeling of it being horrid came back...
That horrible hostile feeling hasn't left since. If anything, it intensified.
Today, as I was sitting in the waiting room for way too long, my thoughts started playing up. I wanted it to be all finished. I hated being there. I couldn't stand sitting there, getting that horrid poison into my veins, possibly for the second last time ever, but still...
My check up (including the full body bone scan to assess the progress of the treatment) is approaching and I started questioning everything.
What if all these didn't work?
I still have the same amount of visible lumps. They aren't any bigger, but I am not so sure if they've gotten any smaller. I am back on the same dose of pain medication I was at the beginning of chemotherapy, while it should have been reduced by now... I am mentally not at that peaceful place I was at before I started chemotherapy and my physical body has yet again been poisoned, completely, by some horribly heavy drugs, which are having numerous side effects (and possibly no benefits) and my body has even changed visibly in the shape. Some extremely serious things are happening!
I had another mini meltdown.
I took off, sat in the car and cried out loud. I felt sorry for myself. I questioned the universe yet again: why me???
But the mini meltdown finished fast. I went in, had my chemo and I'm coming back next Tuesday for (what I decided to be) the last one (possibly ever!), regardless of the results of my scan.
I know there are many other options out there for me to explore, pursue and embrace if I have to.
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.
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 10, 2012
Living With Cancer vs Dying From Cancer
It was last Friday (Good Friday) that Australian Current Affairs (ACA) aired Cancer Cure Claim, featuring Dr. Ian Gawler (http://www.gawlerblog.com/).
It was with excitement I awaited to see an amazing man such as Dr Ian Gawler on mainstream television. Advanced cancer survivor of 30+ years, with then seriously poor prognosis of maximum 6 months to live in mid 70s... And here he is now, in 2012, still going strong, healthy and well and helping others living with cancer and numerous general people who aspire to live a healthy, well balanced life. His foundation and him personally cover many aspects of mind - body medicine and encourage people to take control of their well - being in an integrative way.
He is the main inspiration on my own cancer journey and I feel absolutely nothing but pure respect towards him.
If you watched the segment on ACA, you would have soon realised that the story didn't unfold the way I expected. In fact, it was completely opposite, condemning the amazing work Ian has been advocating over the past 25+ years. I was left extremely sad and disappointed.
I stayed at The Gawler Foundation (http://www.gawler.org/) twice last year.
First time it was soon after my diagnosis of advanced breast cancer. I attended a 10 day residential program and after an amazing and very empowering experience of abundant learning about the path of the journey of living with cancer, I decided to return to attend a 5 day follow up 'cancer retreat' later in the year, together with my partner. Needless to say, it was the best thing I have ever done for myself in my whole entire life.
I can briefly list just a few things I have learned at The Gawler Foundation:
So, watching the segment on ACA last Friday, condemning the amazing work they do at The Gawler Foundation, was nothing less but heartbreaking for me. And the comment by Tracy Grimshaw to finish with: "Desperate people do desperate things" was completely improper and out of place.
I am not anywhere near close to being a desperate person, nor is anyone I have crossed paths while at The Gawler Foundation.
Living life with cancer is very challenging. It is a very fine line between living with cancer and dying from it. I am a strong believer in the power of mind. Yes, of course there are million types of different cancers, and even though advanced and many seem the same, yet they are all different. Just as people are different, cancers behave differently. How come some people with the 'same' type of cancer fall into statistics and die exactly in due time, while others live many years and can have good quality of life regardless of diagnosis?!?
I don't know about you, but my common sense tells me to look for clues and answers in people that are long term survivors. Especially those rare few who are considered 'spontaneous remissions'. And when you do start reading and researching into those cases, you find there are many more than your average Oncologist (like Dr. Lowenthal who appeared on ACA) tells you.
Unfortunately our conventional medicine can only afford researches into prevention and treatment drugs, sponsored by huge pharmaceutical companies, which are not interested in long term survivors, but rather in people who have cancer and need those heavy drugs to somehow extend their life or ease them into death. It is a huge industry. I, as a cancer patient, undergoing numerous treatments, am worth tens of thousands of dollars a year, if not hundreds... Once I'm in a remission (a survivor!), treatments and medications stop and I am no longer of any value to them. That, sadly, is reality.
So no wonder there are no funds to support research in long term survivors... Quite cruel, isn't it?
I do apologise for the lengthy post and I am extremely grateful if you are still reading it. But I have to get this off my chest, as I find it quite frustrating and extremely unfair.
All I tried to explain is the difference between LIVING WITH CANCER and DYING FROM CANCER. I am living with it. And I am living well. In fact, my quality of life is way higher now then has ever been before.
It is both, good and bad, when I either see someone I haven't seen in ages or meet someone new and they say: 'so sorry about your cancer, wow, but you look so good, I would have never thought...'
It's good because it's true. Although I look different (from side effects of numerous different drugs I am on) I still look healthy and well. Probably healthier than most of the general population, as I am looking after myself with extremely healthy diet and lifestyle.
And it's bad, because general person expects me (diagnosed with advanced / secondary / a very serious stage 4 cancer) to look like I'm dying.
And that, I suppose is the main difference.
The perception of the world today still is that having cancer means one will die way before their time, while in fact, one actually can live an extremely fulfilling abundant life managing cancer just as any other chronic illness.
Or even better, just as the likes of Dr.Ian Gawler or another amazing Australian - Petrea King (the founder of Quest For Life), one can achieve the state of complete remission.
Hopefully, sometime in the very near future every single newly diagnosed cancer patient will aim for the above.
And I sincerely hope that our conventional Doctors, Oncologists and media, start encouraging the awakenings of survivors within us all and support us all to take path towards this amazing and already achievable goal, with all their respect, optimism and positivity or just keep nice and quite, and learn to practice some compassion if there's nothing hopeful to be said...
It was with excitement I awaited to see an amazing man such as Dr Ian Gawler on mainstream television. Advanced cancer survivor of 30+ years, with then seriously poor prognosis of maximum 6 months to live in mid 70s... And here he is now, in 2012, still going strong, healthy and well and helping others living with cancer and numerous general people who aspire to live a healthy, well balanced life. His foundation and him personally cover many aspects of mind - body medicine and encourage people to take control of their well - being in an integrative way.
He is the main inspiration on my own cancer journey and I feel absolutely nothing but pure respect towards him.
If you watched the segment on ACA, you would have soon realised that the story didn't unfold the way I expected. In fact, it was completely opposite, condemning the amazing work Ian has been advocating over the past 25+ years. I was left extremely sad and disappointed.
I stayed at The Gawler Foundation (http://www.gawler.org/) twice last year.
First time it was soon after my diagnosis of advanced breast cancer. I attended a 10 day residential program and after an amazing and very empowering experience of abundant learning about the path of the journey of living with cancer, I decided to return to attend a 5 day follow up 'cancer retreat' later in the year, together with my partner. Needless to say, it was the best thing I have ever done for myself in my whole entire life.
I can briefly list just a few things I have learned at The Gawler Foundation:
- how to take control of my 'cancer journey' (to make decisions of my treatments - conventional such as chemotherapy, radiotherapy, surgery and complementary such as acupuncture, holistic GP, massage... with clarity and determination)
- how to accept my diagnosis and achieve peace of mind (tools and techniques)
- how to eliminate my past emotional barriers (counselling and some helpful self-techniques and practices, useful resources - books, CDs, podcasts...)
- how to look after myself physically (with proper nutrition, diet, exercise...)
- the importance of balanced life (mind body soul)
- and many many more
So, watching the segment on ACA last Friday, condemning the amazing work they do at The Gawler Foundation, was nothing less but heartbreaking for me. And the comment by Tracy Grimshaw to finish with: "Desperate people do desperate things" was completely improper and out of place.
I am not anywhere near close to being a desperate person, nor is anyone I have crossed paths while at The Gawler Foundation.
Living life with cancer is very challenging. It is a very fine line between living with cancer and dying from it. I am a strong believer in the power of mind. Yes, of course there are million types of different cancers, and even though advanced and many seem the same, yet they are all different. Just as people are different, cancers behave differently. How come some people with the 'same' type of cancer fall into statistics and die exactly in due time, while others live many years and can have good quality of life regardless of diagnosis?!?
I don't know about you, but my common sense tells me to look for clues and answers in people that are long term survivors. Especially those rare few who are considered 'spontaneous remissions'. And when you do start reading and researching into those cases, you find there are many more than your average Oncologist (like Dr. Lowenthal who appeared on ACA) tells you.
Unfortunately our conventional medicine can only afford researches into prevention and treatment drugs, sponsored by huge pharmaceutical companies, which are not interested in long term survivors, but rather in people who have cancer and need those heavy drugs to somehow extend their life or ease them into death. It is a huge industry. I, as a cancer patient, undergoing numerous treatments, am worth tens of thousands of dollars a year, if not hundreds... Once I'm in a remission (a survivor!), treatments and medications stop and I am no longer of any value to them. That, sadly, is reality.
So no wonder there are no funds to support research in long term survivors... Quite cruel, isn't it?
I do apologise for the lengthy post and I am extremely grateful if you are still reading it. But I have to get this off my chest, as I find it quite frustrating and extremely unfair.
All I tried to explain is the difference between LIVING WITH CANCER and DYING FROM CANCER. I am living with it. And I am living well. In fact, my quality of life is way higher now then has ever been before.
It is both, good and bad, when I either see someone I haven't seen in ages or meet someone new and they say: 'so sorry about your cancer, wow, but you look so good, I would have never thought...'
It's good because it's true. Although I look different (from side effects of numerous different drugs I am on) I still look healthy and well. Probably healthier than most of the general population, as I am looking after myself with extremely healthy diet and lifestyle.
And it's bad, because general person expects me (diagnosed with advanced / secondary / a very serious stage 4 cancer) to look like I'm dying.
And that, I suppose is the main difference.
The perception of the world today still is that having cancer means one will die way before their time, while in fact, one actually can live an extremely fulfilling abundant life managing cancer just as any other chronic illness.
Or even better, just as the likes of Dr.Ian Gawler or another amazing Australian - Petrea King (the founder of Quest For Life), one can achieve the state of complete remission.
Hopefully, sometime in the very near future every single newly diagnosed cancer patient will aim for the above.
And I sincerely hope that our conventional Doctors, Oncologists and media, start encouraging the awakenings of survivors within us all and support us all to take path towards this amazing and already achievable goal, with all their respect, optimism and positivity or just keep nice and quite, and learn to practice some compassion if there's nothing hopeful to be said...
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!
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