TMAS (Too Much Attention Syndrome)… The flip side of going public

InappropriateBlogPost

 

During the first few days of my diagnosis, when only Super Bro, 2 of my best (and doctor) friends who went to my appointments with me and I, knew about my cancer, I was dodging calls, ignoring people I loved and did all I could to stay positive and upbeat when in their presence.  Nothing prepares you for having to tell the people who love you most in the world, that the doctors think you’ll probably be dead within a year.  A few knew there was something wrong when I was sent home from tour but most people didn’t, since I didn’t have the space, physically nor mentally, to tell them.  Then I told my dad, my sister and mother and watched as their worlds fell apart and I wondered where I could find the strength and time to break the news to each of my friends who I held so close to my heart, re-live the story over and over again, watch their faces and hear the pain in their silence as they understood what I was telling them.  So I sent a mass email, still the one thing I wish I hadn’t had to do, yet the only thing I could, given the surreal version of my new, overwhelming reality.  In it, I told them

 

“As most of you know, writing is my therapy and whilst it’s not really my thing, I will be starting a blog to help me through this, to keep you all informed and hopefully be a source of comfort/support/information for anyone else going through something similar… Feel free to deal with this however you want/need to, you’re part of this too now. It needn’t be a secret. In fact I would prefer that people know so that we can all just get this stage over with and get this shit show on the road.”

 

… and with that I felt freedom, not just for myself but for everyone else because I have long been a fan of honesty and know only too well, the dangers of keeping the truth buried inside.

 

Since then I have enjoyed many of the benefits of sharing my story so publicly; the extended family and friendship it has created, the freedom of sharing how I feel and the inspiration it has meant for others who need it but then suddenly it all got a bit too much for me and I checked out.

 

By nature, I am a warm and sociable person but I am also very shy.  I have never been one to enjoy the spotlight, always being behind the lens rather than in front of it, and so have been caught off guard with all the attention I have been receiving.  Suddenly everyone wants to visit me, everyone has beautiful words to say about me, my phone remains full with messages and my inbox with emails, both beautiful and haunting.  Suddenly everyone thinks I am an inspiration, friends are leaving their jobs as they fear not living their true purposes and I’m the new guru in town, the vessel through which valuable lessons are being learnt.  I don’t mean to belittle the sincerity of any of this, the happiness this has brought me and the gratitude I feel for such friendship, but now I find myself in a position I am not comfortable in as I feel myself drift more towards fulfilling people’s expectations rather than honoring my purpose for sharing in the first place.

 

When I made the decision to share my story, it was with the sole intention of finding liberation through honesty, of allowing myself the freedom to be and allowing those I loved to share in my story, without the burden of keeping my secret.  What I did not necessarily want nor anticipate, is how far an audience it would reach and how people now look to me for insight, positivity in the face of adversity and inspiration.  You see, the truth is, whilst I am and have always been honest in everything I have posted thus far, I have been really down lately and have withdrawn from social media and even my friends to some extent, because of the pressure I have been feeling to remain positive for them and it is only I that I blame for this feeling of entrapment.

 

Yes I am a positive person and yes I do count my blessings everyday but I am also human and the truth is, I am scared, not so much of dying but of leaving those I love behind to pick up the pieces.  I have nightmares about it frequently, my sleep often peppered with dreams I want to wake from.  The truth is, messages from people I don’t even know, like this one, stay heavy on my heart and never escape my memory.  The truth is, through my own determination to ease the pain, I feel the pressure to stay positive so that those I love can stay positive too and forget the possibility that they may lose me.  The truth is, I don’t like so much fuss being made of me.  The truth is, I have long been a ‘people manager’, where others’ emotions and needs matter more than my own and all it has ever resulted in, is sadness and frustration.  The truth is, the self-imposed pressure of needing to be too much to too many people, has left me exhausted and I don’t want to do it anymore.  If cancer is, as I believe it is, a gift to me, I want to accept that gift and let go of that which does not serve me.

 

So with these admissions of truths, comes a lesson (re)learnt…

To accept my whole self as I accept others and be as compassionate towards myself as I am towards them, as accepting reality leads to change that denial never can.

 

#PermissionToBeMe #JustBe #Balance #IAmHuman #BeGoodToYourself #Acceptance #HighsAndLows #PleaseDontSendMeShitLikeThis #OnlyTheWholeTruthFromNowOn #ThisWritingIsForMe #Truth #TeamSlugSlayer #Blessed #NeverForgetToSayThankYou #ThankYou

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Finally… my white blood cells are up and its time to love this slug back to health. Round 4 chemo lets GO!

10_17_2013_chemoRound4

 

Great news, my white blood cell counts are up and almost 7 weeks since my last cycle, round 4 chemo is finally about to go dowwwn. Time to love this slug back to health. We got some catchin up to do! Let’s GO!

 

THANK YOU ALL for your prayers, love and support. I can’t write back to you all but know how beautiful all you slug slayers are to me. There are so many of you that I’ve never even met, reinforcing the beauty that I’ve always believed the human race to possess. If only I could share you with every other person in this room and beyond having chemo…

 

 

#wearepossible #spreadthemessage #poweroflove #powerofprayer #community #teamwork #roughwiththesmoothe #easeafterhardship #letgoletGod, go on holiday and get a tan while you’re at it. #blessed #neverforgettosaythankyou #teamslugslayer #slugslayersupercrew

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Doing what you love but making time for you too

10_16_2013_portugal

 

When I started chemo almost 4 months ago, I was told that I needed to avoid situations that could compromise my immunity to infection for the duration of my treatment, traveling on airplanes being high on the list. However, my white blood cells have been too low for chemo in the past few weeks and though this has meant a delay in my treatment, it has brought with it the pleasure of an unexpected holiday.

 

Ever since I found what it is that I love to do, I’ve not stopped working and though a blessing, it’s meant that I find it difficult to switch off and do nothing sometimes. But if there is one thing that these last few months have taught me, it’s the importance of taking care of yourself, of listening to your body and your spirit and respecting its wishes, sleeping right, eating right and knowing when to stop and commend your achievements rather than keep chasing those you’ve not yet accomplished. I’ve learnt that that which gives you pleasure can also be the thing that causes you most pain but there’s no rush, everything will be as it is meant to be, in its own time and with every hardship comes ease if you choose to see it… so relax, take it all in, savor each moment and #NeverForgetToSayThankYou.

 

Thank you God for this borrowed time to lay my eyes on the ocean and feel the sand between my toes and thank you for the peace you are granting me on this journey.

 

#blessed #eyeswideopen #easeafterhardship #grandplan #peace #SavorTheMoment #TheOceanIsASliceOfHeavenOnEarth #AdventuresOfASlugSlayer

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Lovely Lucy and her walk for Cancer Research UK

Lucy_CancerResearch

 

Soon after I was diagnosed, I was told about Maggie’s, a wonderful Cancer center in the middle of busy London town. A bright orange building designed to feel like a tropical retreat, it offers all kinds of support, information and holistic treatments for Cancer patients and anyone affected by it. I remember first walking into Maggie’s… I was immediately struck by the serenity of its atmosphere and was almost unnerved by how heavenly it felt. I saw other patients who were frail, some quite visibly dying, along with others who were vibrant and full of life and suddenly it hit me, “I am in a Cancer center. I have Cancer.” I remember feeling so out of place because I didn’t feel then, nor do I still honestly, feel like I have ‘Cancer’, an awful and crippling disease, one with all sorts of negative connotations and attachment, however I was told about a monthly support group for others with upper gastro-intestinal cancer and thought I should pay it a visit in the run up to starting chemo.

The youngest in the group and also with the most advanced Cancer, I was one of only 3 females. I sat in that circle with my mum and super-bro by my side, with my heart in my throat, trying to hold back the tears as I introduced myself. They were so kind and it wasn’t long before I opened up and my tears turned to smiles. The group was made up of mostly middle aged to older men, all of whom were in remission or close to I believe, who through monthly meetings, work to support each other through their shared experiences. Identifying the newbie amongst them, they focused their attention on me as they shared their stories. It was there that I met lovely Lucy, the other 30 something anomalous female with oesophageal cancer, now post-surgical and in remission (yay!!!). Since we met 3 month ago, she has consistently checked up on me, offering me support and wisdom that only someone who has been through it can offer, she knows my chemo calendar better than I do and is always on hand with kind words and invaluable advice. Saturday just gone, she walked 13 miles for Cancer Research UK and asked if she could walk for me. I truly believe that it’s people like Lucy and support like hers that makes the difference between dying of cancer and living with cancer and looking to it as a positive and blessed experience. As I have said before, I strongly believe that Cancer is more a symptom than a disease and even more strongly, believe that we have the power to heal ourselves. Of course there is a place for medical treatment but the most invaluable remedy is in the power of positive thinking and community support, both of which I am so thankful to have plenty of. So thank you Lucy for being such a light in the short time that I have known you and thank you, my army of slug slayers, for your unwavering love and support. You don’t know the power of your kindness but you are healing me. WE ARE POSSIBLE!!

#blessed #cancer #support #Maggies #CancerResearchUK #friendship #PositiveThinking #Kindness #LoveHealsAll #AnythingIsPossible #WeArePossible #TeamSlugSlayer #NeverForgetToSayThankYou

 

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The Power of love; a video for me on Beyoncé.com

video for me on beyonce.com

I do this thing when I’m really emotional, I get extremely quiet and stare into space for hours. Tears get temporarily obstructed and my mind becomes still before a sense of clarify takes over. Then I promptly fall asleep. Last night, I was sent this video, that Beyoncé and my tour/Parkwood family made for me and I am so deeply touched by their love, that I am really struggling to find the words… so I’ll just tell you a story…

Just before I got the job as Beyoncé’s photographer, my life was a mess. For years I had been that quintessential hippie artist, determined to follow the direction of my heart, with little clue as to where it was taking me. I always thought I was meant to be a painter but then this annoying thing called photography came into my life and it just wouldn’t leave me alone, no matter how hard I tried to push it away. I grew to resent the endless hours I would voluntarily spend editing my photos in the middle of the night whilst my canvases lay dry in the corner, yet I couldn’t stop. Then one day earlier this year, when I could no longer afford to pay my rent, I decided I was done. Done fighting it. So I packed up my studio and my apartment and asked God to catch me as I surrendered to him and I gave myself until April 15th to leave New York. Meanwhile, Beyoncé was looking for a photographer for her upcoming world tour. I was asked to audition and I got the job of a lifetime. 5 days later, on April 12th we left for Europe. I was home.

Whilst on tour, my health was deteriorating but I was too busy to notice. Alarm came when I could no longer swallow and I stopped eating altogether, whilst working around the clock. Yvette, Beyoncé’s faithful publicist and my guardian angel, hadn’t seen me for a couple of weeks but when she saw me in Milan, she rushed to me, hugged me and said “I’m going to cry. You have to go to the doctor” and she arranged to send me home. Through that act of love alone, she saved my life. Then the diagnosis came and I had to accept that my time on tour was over.

Doctors said they couldn’t cure me, that they could only hope to maintain my cancer, yet 3 days ago, we found out that it has reduced by 30% in just 3 chemo cycles. Shocked and perplexed, my doctors hugged and high fived me, looking at me with confused smiles on their faces. I am the talk of the department. Of course they may put it down to my cocktail of daily drugs and yes, they certainly have a big part to play in my treatment but what I have always known in my heart is that love and acceptance has been my biggest healer. I have always had tremendous love in my life but since my diagnosis, it has reached such overwhelming heights, that even I am in disbelief. Team Slug Slayer is a movement, a collection of beautiful hearts who with no desire but to express their humanity, have lifted me beyond any illness or circumstance. Cancer is just a word, just a name given to something that needs love and I have always believed, that with the love that you, my slug slayer super crew have given me, I am healed. If I was meant to go through this, in order to show the world what the power of love can do, then I would do it again. And again.

I am so eternally grateful to all you who are healing me each and every day. We are powerful beyond our wildest imaginations.

To follow my journey, we have set up this blog, where I will document my story and share with you all everything that has helped me, with the hopes that it too may inspire you to turn to love for your healing, whatever your inner slug may be.

With infinite love and gratitude,
Yosra.

You can watch the video my tour fam made for me here www.beyonce.com/news/were-with-you-yosra

#IWillNeverBeOkWithSeeingMyselfOnAScreen #TryingNotToCringe #ManILookedSickOnTour #JustBelieve #WeArePossible #AllYouNeedIsLove #Faith #Prayer #LoveReallyDoesConquerAll #CancerIsJustAWord #SlayYourInnerSlug #Community #Healing #TeamSlugSlayer #SlugSlayerSuperCrew #Blessed #NeverForgetToSayThankYou

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WE ARE POSSIBLE!!!!

first scan results

 

Results are in… Not only is there NO new disease, but there is a 30% reduction in my tumour size!!! 30% with 3 rounds of chemo alone!!!! AND I’m heavier than when I started AND my hair isn’t going anywhere AND I can jump high and touch the sky. THANK YOU GOD!!! And THANK YOU #teamslugslayer!!! Don’t ever let anyone discourage you or tell you you can’t do something. WE ARE POSSIBLE!!!

#loveisallyouneed #teamwork #teamslugslayer #believe #accept #faith #trust #peace #blessed #neverforgettosaythankyou

 

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My first scan, our multi faith prayer circle and healing through love

pre scan prayer circle sun 15th sept 2013

Tomorrow morning, Wednesday September 18th is a big day, our first milestone since chemo began, where we will discover how my body is responding to my treatment. As someone with stage 4 cancer, statistically the doctors do not expect to cure me but hope that with continued treatment, they may alleviate my symptoms and prolong my life. However, what they don’t take into account is that your physical being only makes up a fraction of your health, in that your state of mind, both mentally and emotionally, are what truly determine your wealth.

At around 8:30pm on Sunday just gone, we held a multi faith prayer circle, the coming together of friends from different cultures and backgrounds, in person, on skype and around the world, to ask for my healing. We gathered together, held hands and we prayed and as the sounds of tears filled the room, I felt free, free from anxiety and fear, as I realized that through love alone, I am already healing, regardless of what tomorrow brings.

To everyone on #teamslugslayer, you are my greatest gift.

#allyouneedislove #healing #blessed #prayer #GodIsGreat #bestfriends #gift #slugslayersupercrew #teamslugslayer #neverforgettosaythankyou
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slay with love

slay with love_rt

 

I strongly believe that cancer is not a disease as much as it is a symptom; a symptom of dysfunction within your own body, a symptom of your own cells rebelling against their environment and begging for change. “This all seems a bit misplaced with you” one friend responded, on learning I had cancer. It’s true, why me? I am young, active, I don’t drink, I don’t smoke, I like to think I have a good attitude towards life, I appreciate my everyday and I definitely know how to love. So, why me? The truth is, I don’t know why I was chosen for this journey but I can say that from the moment I learnt of my diagnosis, I have felt an inner peace about it because in my gut, I know there is a reason for it, a beautiful reason, beyond my most vivid imagination and know that this is exactly where I am meant to be.

So came the diagnosis and I had to find the words to tell my friends that I was ‘dying’ from cancer (a word doctors default to when they don’t know the answer and they forget who is actually in charge, but that’s a whole other post). The term ‘slug’ was born, as a way to visualize the imposter that’s invaded my body and de-intensify a word with such negative connotations (again, the power and choice of your words is a whole other post). It came from the size and shape of the primary tumour in my oesophagus, where it meets my stomach, a mass of 5cm long, 2cm wide and 1cm deep. My friend then coined the term to ‘slay the slug’ and so it stuck and it was I who, again, wanting to lighten the mood, added to the term with its very own emoticon (a slug and a gun), the closest I could find to a ‘slug’ and a ‘weapon’ with which to slay it. However, although the point was to lighten the mood, the intention was never to use violence or hate to achieve that and though comedic in nature, I’ve come to grow uncomfortable with those emoticons now, as I fear it sends the wrong message…

The way I see it, is that the slug is a part of me, a part of me that is in pain and begging to be healed. So how can I hate it? You don’t abuse a child and expect it to grow into a self-loving adult and those in society who hurt others, (bar perhaps those with mental/clinical issues) whether it be emotionally or physically, have been hurt themselves, so do we just hurt them too? I know there are ways in which I need to heal and cancer is, I believe, the gift I have been given to heal myself from within… and yes, the slug does still need to get slayed, just as a child needs to be disciplined… both best done with love.

Thank you beautiful Hana for sending me this illustration.

#nothingbutlove #healing #selflove #lookwithin #blessed #teamslugslayer #nomoreslugandgun #neverforgettosaythankyou

 

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some people are just worth it

tina wedding_rt

 

This morning, the morning of her wedding day, one of my dearest and oldest friends of 20 years ‘Tina ba bina’ texted asking me how I was feeling and no worries if I couldn’t make it, that they’d be thinking of me and that she’ll be right over to see me when she’s back from honeymoon. In truth, until her text, I hadn’t considered that i’d be well enough yet post chemo to attend but decided that if she could take the time to think of me on a day so hectic, it must mean a lot to her to have me there, so i replied saying ‘my hunny if I could be there with you, you know I would’, wished her a beautiful day and told her I loved her.

When she spotted me during the ceremony, I saw her jaw drop and her emotion rise and was reminded of the beautiful friendship we share because although I’ve been away from london for years now and we rarely get a chance to speak, she has always been there and always will be, like only real friends are. These are my school friends, we first met as 11 year olds over 20 years ago, down the road from where we were today. Weddings, bumps, a few wrinkles later, we’re still the same. Missed you @sherrytad

#fullcircle #friendship #oldfriends #neverchange #stillthesame #nothinlikeanoldie #blessed #love #lovesofmylife #neverforgettosaythankyou

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toyin odutola… an artist you should know about…

toyin's drawing of me_rt

 

‘”Yosra”, (2013).  Cropped.  Pen, ink and marker on paper.  9 x 12 inches.  This one is for you, Yosra!  You are a beautiful soul!  It was a pleasure for me to draw this portrait of you.  I am rooting for you through this journey.  You’re an inspiration, love!’

Holy moly… Thank you @obia_thethird for this honor. If you don’t know this artist already, you will soon, so I suggest you dive into the genius of this beautiful woman and her pens like, right now… Inspect her technique carefully as she allows you to, then when you figure out just how the hell she does it, let me know. Mmkay? Thanks. ;)

#toyinodutola #myfriendbad #portrait #artist #blessed #neverforgettosaythankyou”

http://toyinodutola.com

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