My Only Wish

As I'm lying down, resting, healing (have been for the past couple weeks since my last radio therapy), I can not help but feeling sorry for myself...
I am unwell. Truly, physically unwell. I have not been this unwell ever before in my life.
I am weak, extremely fragile, finding it very hard to walk, sit, stand for longer than 5 minutes at the time... I hardly leave the house these days. Dropping off my daughter to school is an enormous task. Even just visiting the Doctor sometimes too hard ... I can't go down the beach, since I can't walk for more than couple hundred meters. I don't go out to cafes at the moment, since I can't sit properly for more than 5 minutes and it requires way too much of an effort to dress up in the first place...
My favorite place is home, in my recliner. Just lying down, snuggled in a blankie, cups of tea, a nice romantic comedy, my iPhone and 3 comfort meals a day. My only desired company is my beautiful daughter and my loving man...
My emotions are all over the place too.
I mostly feel sad. And frustrated for being so useless. Angry, when I wish to do something and I realise I can't. I also feel scared of losing the vision ...
The vision of being well again.

The numbness in my leg, particularly in my foot, is much easier to handle than the pain, but yet it's hard to deal with when trying to move around. Or even just putting clothes on. It requires much too much effort.
The tingling sensation in my chin is scary. Scary because it's been there before, about a year ago. And soon after that, there came cancer diagnosis in my chin, scull and tumors in my brain. The tingling went away after radio treatment, but came back recently ... Does that mean cancer in my chin is back?

We were meant to be in Thailand at the moment. A three weeks long warm sunny tropical family holiday. Creating lovely memories. Well, we are not there, because I'm too unwell. The trip has been postponed till mid September. Something to look forward to. But I want to be well! I want to be healthy. I want to be pain free, numbness free, feeling well, energetic, and full of life. Possibly on a very low dose of medication, no steroids. Will I?

Another challenge is my hair. It's been over 6 weeks since my chemotherapy. My body hair is slowly coming back, but my hair is staying so very thin... It's just horrible. I cut it short the other day to get rid of that horrid 'zombie' hair look. But didn't do it any justice. Now all my bright red subcutaneous tumors (which are placed all over my scull) are obvious and are visibly popping out... Not a good look. Scary, really.

I look unwell. I feel unwell.
And I had enough! I am exhausted. Exhausted of needing to make important decisions on my future treatments, exhausted of feeling old, fragile, unhealthy, weak, unstable, uncertain.... And sick of seeing someone else in a reflection when I look in the mirror.

My only wish is to feel well.

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

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.

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.

I wish for GREEN to be the new PINK

October, the month of 'Pink Ribbon' for breast cancer awareness is finished.
So I thought it was a good time to spill my thoughts........

Back in early 2008, as most of newly breast cancer diagnosed women, I was in a total shock, had absolutely no knowledge nor idea of what to do, where to turn to, so I went with the flow of conventional medicine.
It went something like this:
following a finding of a lump, I visited GP, then had mammogram, ultrasound, biopsy, was sent to a surgeon for lumpectomy, then sent to Oncologist for chemotherapy, Radiation Oncologist for radiotherapy and more chemotherapy afterwards - all in the speed of light, without a slight break to take it all in, take time to research and learn about the scary & complex disease I was just diagnosed with.
It was 100% out of my hands. I handed my treatment options with 100% trust to Doctors. In other words, I have not taken any responsibility either for my condition or treatment options for myself.
It was a horrible year.

The only bright light in that year was the support that was offered by National Breast Cancer Foundation (NBCF). From the early stage of diagnosis, when I received a phone call from my breast care nurse (who I felt was an angel sent to help me), to a beautiful pink pack of goodies (a calendar to record my journey, costs, appointments etc., brochures with explanations of treatments and even a complementary, very comfortable wireless bra to get me through post-surgery time) and later a weekly Breast Cancer Support Group, where I met ladies going through the same rough times, had some professionals talking about the importance of exercise, nutrition etc

All of the above support was greatly appreciated. So much so, that I decided to get involved straight after my treatment finished and held my first Pink Ribbon Breakfast only a few days after my last Chemo. I was wearing a wig, campaigning and with the support of few good friends raised couple thousand dollars at our local cafe. It was a good feeling.
I have since repeated the fundraising few times, by either hosting a Pink Ribbon Breakfast or walking and running Mothers' Day Classic.

Until I got diagnosed with the advanced cancer late last year....

It was planted in my brain that it is the second diagnosis of cancer that kills you. And there I was. It was secondary. It came back into my bones, some in the lymphs above my lungs and few months later found in brain, too.
According to my past believes, that is it. You are gone. Once it's in the brain, there is nothing you can do, right?!? You might as well just make a bucket list and spend the last few months of your life doing what you really want, dying doing what you have always wanted....

Not sure what happened in my head after initial diagnosis of secondary cancer, but it was different. The old believes have disappeared quite fast.
My oncologist was helpful, positive, told me not to panic and gave me few examples of ladies living 6 or even 10+ years afterwards, feeling good.
Obviously, I went straight online and started Googling like mad. The info appearing wasn't nice.
I tried to find Support Group for secondary breast cancer, but there were none to be found.... I contacted NBCF and received a very similar pink pack, info on cancer, stats and prognosis, info on treatments, a hand cream (WTF!??!) etc and only 2 things that I actually found useful: a little brochure with inspirational surviving stories and a CD with meditation exercises.
I must say, that overall, I was disappointed with the lack of support by NBCF at my stage of disease.

But I didn't give up searching. Although I had no idea exactly what I was looking for, I felt there has to be something out there... Surely there are stories of long term cancer survivors!
And that is when I came across the book 'You Can Conquer Cancer', written by a long term cancer survivor himself, Dr Ian Gawler (www.gawler.org).
As I red the book, my old belief melted. There was HOPE! And I was filled with it.

The book was such an eye opener. It covered all - from conventional treatments such as chemo and radio, to importance of diet / nutrition and meditation for the peace of mind and clarity.
The amount of important information for my next steps of journey was enormous. It pretty much opened the door to everything I need to get well again. And yes, it is absolutely possible.
As I was taking further steps on my journey, I came across some amazing long term cancer survivor stories.
And with my mind set on a long healthy life, who better to trust (and footsteps to follow) then the long term survivors themselves.

And this is where the shift from PINK to GREEN comes in!

There are a few things that the long term survivors have in common (in conjunction with their treatments) :

• change of diet to unprocessed, fresh, high alkaline, vegan / plant based
• no sugar, salt, alcohol, caffeine and nicotine
• freshly squeezed vegetable juices and / or smoothies
• meditation
• acceptance and love of life

It sounds simple, doesn't it?
So, why don't the doctors just prescribe the above?
Well, unfortunately the doctors and big foundations such as NBCF basically work for pharmaceutical companies (either directly or indirectly).
The doctors are there to prescribe drugs and they are not trained in nutrition. They unfortunately still recommend meat & three veggies diet. There have been no scientific research on food and cancer connection as their is no funds for that kind of research. No pharmaceutical company will fund research on food or meditation for that matter, as they are all basically free of charge and stealing away their 'drug' business.
Same goes with NBCF. They are unfortunately mostly sponsored by huge multinational companies, and all the research money goes to searching for a "magic pill". Unfortunately there will never be such thing as a "magic pill" cure for cancer. Cancer is way more complex than that.

Like it or not, GREEN is the answer. The change of lifestyle to a super healthy green, toxin free, organic, back to nature style.
It can be hard, or impossible for some, but definitely challenging for all, and that is why most people don't do it, keep living the life in their comfort zone, and keep waiting for that "magic pill" to appear.

So, in the future, when donating to a good cause, ask yourself - where does the money go to?
Do I wish to support PINK or GREEN? What do I believe in?
I am GREEN all the way!