“I feel ready to show people some of the pain I have gone through. I have been fighting Hodgkin Lymphoma for two years with a lot of issues and complications. The cancer where 90% of people get cured but I was in the 10%. It has been the hardest journey and I have been supported by the most amazing people who I love so dearly”
Have you ever met someone who believes they are living on borrowed time? Who believes they will never get the chance to really “live” again so they are really living now.
Literally making each day count.
Almost to the point where it’s hard to keep up and kind of makes your head spin.
You feel proud and inspired and anxious.
As far as “grabbing life by the balls” goes – those people have got it down pat.
As my friend would say – “you don’t start living, until you start dying”.
I met Vittoria (Tori) a couple of years ago. Her partner worked with my husband and we had some mutual friends. She was practical, the kind of person who works hard and buys their first home at age 18. She was cool and warm and she inspired happiness. It’s not often you meet people of a similar mind and vibe so although I didn’t know her well, I knew her well enough to have figured out she was someone I wanted to get to know better.
But Tori got sick. And the circumstances of her illness took her away from Western Australia where we were both living, and back home to Victoria for treatment.
Through Facebook and friends, I heard bits and pieces of what Tori was going through. Nothing was certain but I didn’t feel like it was my place to ask questions. I watched from a distance and just hoped she was getting better.
Then one day, out of the blue, she posted a picture of herself in Dubai.
After months and months of social media silence here she was, smiling at the camera sporting short curly hair and captioned with “solo adventure, quarter life crisis”
Intrigued – I kept close watch. Over the following days more and more pictures came through from London and then Istanbul. Still not sure what she had been through but still not feeling compelled to pry – I watched her adventures unfold through Facebook. Then one day – the post to answer those niggling questions. Accompanied by pictures, she wrote:
I feel ready to show people some of the pain I have gone through. I have been fighting Hodgkin Lymphoma for two years with a lot of issues and complications. The cancer where 90% of people get cured but I was in the 10%. It has been the hardest journey and I have been supported by the most amazing people who I love so dearly. This trip for me is about breaking away from my depression and suicidal thoughts. So if I can inspire someone to keep going when everything is going wrong then I have done some good in this crazy, unfair world. These pictures are of me 1 year ago in hospital during a stem cell transplant which unfortunately did not work. But I’m living life to the full for the time I have”
I was compelled. I knew I wanted to make contact. I wanted to tell a bit of her story. I wanted to share her strength and courage and I asked her if I could do that. She called me a couple of days later and we spoke for 3 hours. I don’t know the last time I spoke to someone for that long on the phone but I do know it was one of the most interesting conversations of my life. I don’t really know what I was expecting, but I know I got more than I bargained for. I hung up the phone feeling like she had changed me a bit. Like something in my DNA had shifted a little. Tori’s diagnosis came in 2014 after a couple of months of feeling unwell. She had a nagging cough, she was fatigued and lethargic and she found a couple of lumps around her neck. She was having night sweats and fevers.
After not having much luck with the GP and on the advice of a customer, Tori presented herself to A&E where a chest x-ray revealed a mass in her chest about the size of a closed fist. Her resting heart rate was 140 beats per minute. The body was on stress overload.
Tori found herself admitted to hospital the following day undergoing further tests. Her official diagnosis came about 5 days later. Hodgkin Lymphoma. Tori went from being a 23 year old woman planning her dream wedding to the youngest patient on her cancer ward, carrying out a treatment plan which included moving back to her family in Victoria. After trying alternative cancer treatments and battling through various options and opinions on what she should do; Tori underwent 6 months of ABVD chemotherapy. She told me that after her very first treatment she felt fantastic “I was glowing”. Her cough dissipated and her fevers stopped. She “breezed through” her treatment, never losing any of her hair and actually gaining weight when she thought she would lose it. Her prognosis was good and she was feeling positive. At the end of her treatment in January 2015 there was only a tiny bit of the mass left and all signs pointed it towards it being gone within a couple of months.
So when the time came and she approached her doctor asking if he “had good news for her” – her world came crashing down when he shook his head. It had come back and there were new lumps. She had to Undergo 2 rounds of IVAC as an inpatient followed by a stem cell transplant. But first she underwent treatment for fertility preservation.
After the stem cell transplant, Tori was so full of medications she started having trouble sleeping. She went days and days without any sleep and this set off what she describes as a type of drug induced psychosis. After all the pressure and big choices and shattered hope – She was not getting better and she couldn’t cope.
She gave up. She wanted out. She was done.
She started preparing to die and operating in “slow motion”. She couldn’t communicate or think straight and became “emotionless”. She told me she would say she wanted to go home and would point to the sky and that she would lie her hospital repeating for hours that she wanted “old tori” but couldn’t reach her.
Tori told her mum she deserved a better daughter. She told her fiancé to find a new wife. Late at night while her mum slept next to her hospital bed she smacked her head into the window of her 7thth storey room in an attempt to break it and throw herself out of it.
She was under 24 hour surveillance – suicide watch, for more than 20 days. Her mind would play tricks on her and she developed aggressive and sometimes violent compulsions and at her lowest point, she asked a friends’ young son to assist her suicide.
She asked people to help her end her life again and again and again.
After leaving the hospital into the care of her family –She would go around and try to knock on the neighbours doors to ask if she could live there because she had convinced herself she was going to be homeless, because what use was she in this society? How could she work and support herself if she was never going to get better? How could she be loved and included?
She asked her partner to get her some rope to hang herself. She couldn’t get her head right.
A month or so after leaving the hospital, Tori had a scan that came back clear. There had been no growth or progression of her cancer – but by this stage Tori says “no one was home”. She battled this depression for 5 months. Her recovery was a slow and painful process and took its toll but it started putting things into perspective.
As Tori started to take back some control of her mind, She went back for another scan which was mainly clear but led to 13 rounds of radiation as a preventative measure however 2 months later, another scan revealed 2 new spots. One on her oesophagus and one near her heart. She had a biopsy done on the spot near her oesophagus but it was too risky to get to the one near her heart. Her biopsy came back as insignificant. This meant she was unable to get onto the trial for a potentially lifesaving drug despite all the failed treatments she had faced. Physically, she was feeling well and she didn’t know how long that feeling would last – she wasn’t out of the woods. Her treatments had failed. Her cancer kept coming back. So what are her options now?
A further 20 + rounds of radiation?
Another stem cell transplant?
Keep an eye on it?
Tori decided enough was enough. Her life had been on hold for more than two years. She hadn’t been able to look forward or make plans and had been living in limbo with a constant niggling that she wasn’t coming out of this. Mentally, she was just holding on and something needed to change. That thick black cloud of depression was still looming.
So she took off.
She felt brave and bold and ready to embrace the time she had left. Tori wanted to leave behind the weight of her illness, her suicidal thoughts and break free from her depression. She desperately needed a new perspective. She loved and was in love but she didn’t know how to move forward in her relationship without questioning how much of a role her cancer and guilt would play. Everything had changed and nothing was guaranteed.
She left her partner, she left her home and she started an adventure.
She has ended up in Istanbul and she is loving it.
We have talked about further travel to Greece and Italy. Switzerland, Paris, Amsterdam, Cameroon, South America, Hawaii and more but for now, she is investing in the Turkish culture and the heady hustle bustle of this ancient city.
I have stopped asking her “what’s next” because I can’t keep up.
Tori was going to be my “hero of the week” about 3 weeks ago.
But nearly every day I get a message with a new bit of information, a new idea, a game changer and I have to wrap my head around it and work out how to fit it into her story. And it’s not always big stuff, its little things. Its new perspectives and appreciation.
She shows me how taken she was by the vibrant colour of the fruit she’s eating. She had new tattoos with these gorgeous meanings behind them (6 in 10 days). She shows me these places that she’s seeing and talks about the energy she gets from them. She posts pictures of food and its glorious. She gets to know people. She’s treating herself. She is embracing this body that is, theoretically, working against her and she is owning it. She is loving herself.
She takes time to have conversations with people. She’s having coffee with strangers, becoming a citizen of the world and taking us all along for the ride with her and its astounding.
And then she will send me something crazy. Something that makes me go …. Wtf?
Some plan or idea or experience and I will think she’s done it – she’s gone off the rails but then I talk to her.
And she has this spark.
And she has this strength.
And she has this way of just letting you know she just knows what she’s doing.
She’s got this.
She’s totally in control and I think the thing about that that I sometimes find unsettling is that you don’t come across that often.
Everyone is held back by fear or doubt or debt or responsibility or obligation or something – but she’s not and that’s a little confronting because its unusual.
She finds joy and meaning in everything. She finds warmth and good in everyone.
Against the advice of everyone, she spends times with the Syrian refugees scattered on the streets of Istanbul. She feeds their kids. She brings them water and cries with them.
She has just rented her own apartment in Istanbul to use as her base between adventures so she can go to the local orphanage and volunteer to teach English.
Her mum is coming to visit next month. Her life is going on. She has found herself again and she is holding out for a miracle and if that doesn’t come, at least she knows that for whatever time she has left, she is really living. Eventually, if she is able, she intends to work on getting her dual citizenship and settling in Italy.
She is inherently positive and for want of a better word – it is quite simply, inspiring.
My words don’t do her journey justice. I have struggled to put this piece together. I poured repeatedly through all the notes I took and conversations we had. It’s really difficult to put someone else’s experiences and perspectives into your own words. I cannot write powerfully enough to portray the sentiment of this story and I think that’s why I have found these words so hard to get out. But I really wanted to write this. It has never taken me so much time and effort to write one piece but I really wanted to share this with the world. Not just for her but for anyone who is struggling. For anyone that needs a new perspective or a bit of inspiration.
This Thankful Thursday is dedicated to Tori. I started this writing her story in a completely different place to where I am now. I couldn’t have imagined what would come out of this; the effect her story would have on me or the friendship that I would develop from it.
But I just want to mention that Tori is not the only hero to feature throughout this story. Her family and the people who held her together and willed her to keep going through the toughest of times also deserve the title. The people that would have had to source unimaginable strength to support her day in and day out and be selflessly available to her every step of the way. The nurses who held her hand, the friends she made in the hospital, everyone that came together to help her fight. Everyone that she is forever grateful to.
Vittoria, you are my Hero of the week.
*Tori and I have written this together with her experience and my words. She has asked me to add some of her own beautifully written words to the story on her behalf;
Why me God? Why not the paedophile or the murderer? Why not The man or woman who have disgraced their bodies with drugs and alcohol for decades? No one can understand the mental struggle of watching young people in the street and on Facebook enjoying life and going to wonderful places; getting married and having beautiful babies. I’m happy for them but couldn’t help but be jealous as I’m lying in a hospital bed vomiting for months on end. One main reason I stayed off Facebook during that time was the shame of everyone doing so well and in some way I failed life by getting sick and my confident, proud nature got smashed. When you go to bed every night saying “I hope tomorrow never comes”, then when it does and you wake with a bitter start to the day. Literally being dragged out of bed each day by my mother so I don’t stay in bed while the outside world goes on unknown of my war going on in my head. People always trying to make me feel better made me feel worse. I cut myself off for months with no communication with many close friends and family. I couldn’t bare for them to see me in this way. I’m letting go of the bitterness and reviving the sweet loving generous nature I’ve always had. I no longer want to tell small children Santa is not real or be jealous of old people because they have lived like really lived, though war and peace. Had children and grandchildren. Experienced things that only decades on earth would allow. My relationship with God is stronger than ever so;
Dear God hear my prayer please allow me to be healed in Jesus name. I vow if given a second chance I will help people wherever I can in the best way I can. I feel so broken and I need to be put back together. Please I beg of you hear my prayer. Amen
I remember saying “shit if all this it to make me stronger then please let me be weak”
God only gives you what you can handle hey? well I thought I couldn’t handle it all because I wanted to die so bad. But looking back if I had never got so low then the view from up here now wouldn’t be so amazing. Peace and love to all and never give up.