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:

• 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 is so important. It is (next to love) the main driver in my life.
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.

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.

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:

• 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

Overall, it was very intense, but totally life - changing experience.

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...

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!