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.

Just Another Hiccup? Perhaps.

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?

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