” Yes it sucks, and it will suck for some time now..so cry, keep on crying and shout all you need, and keep doing that for one full week…but when that one week has passed that’s when you will have to stand up straight, say ok. This is it. This is what I need to do now. This will be my one and only priority, my new full-time job now is to get this right, to get back on track and get well again.”
The Feral helped me find a path, directed me out of the maze of panic.
It was the hardest week of my life. I talked, talked, talked with my near and dear. I cuddled my dogs, buried my face down their soft furry necks and held them close. My loyal wolf pack. I cried. A lot. A week passed and with force I stood up again.
I love Thursdays at 9pm, that’s when I have my weekly catch-up call with Mairead, that kind of friend I wish everyone has. The friend you share everything with, life’s joys and sorrows. We speak a lot about visualisation, there’s such power in taking control over your life by taking control of your mind, we can speak about this for hours and share thoughts, ideas and inspirations.
Cause that’s the thing, my life might be put on hold but there’s just too many things to get back to, to see and yet to experience.
I’ve never been to New York. I want to watch the season changing in Central Park, see those autumn leaves explode into red, orange, brown, warm earthy colours as I make my way through those sky scrapers that makes up Manhattan, get lost in Brooklyn, take the subway…. It’s lunch hour and packed of people going on with their busy lives, there’s a hot dog stand next to another stand where a weird lady sells even weirder hats, it’s so smelly down here in the underground.. urine, a repugnant stank of urine that makes your nose crinkle but somehow it belongs there, it’s a part of the atmosphere, a part of that city pulse. I want the stereotypical New York as shown in SATC and Friends but still discover the genuine, the things you only expereience by travels and visiting places. I want to whistle a yellow cab.and take a tour out to the Statue of Liberty and dream of where my next destination would be.
Maybe finally go to Tokyo? Maybe visit those parks where those cherry trees blossom into sparkly pink that my friend Marie often dreamt of seeing, we should definitely do that.. Sharing visions and dreams with someone else is more powerful… yes…we’ll go to Tokyo to get amazed by all those cool trendy Japanese schoolgirls and to indulge in sushi.
Maybe I’ll also take a trip to Italy, Oh how I love Italy.. or maybe Spain. Find comfort in the sun, even just for a few relaxing days on the beach, stick my feet into the sand, feel the grains of sand travel up the springs between my toes and wiggle them..just because I can. The biggest worry would be to decide what heels to wear that evening. Change outfit eight times within the hour and still end up with the old reliable red dress, the one that flows with the wind. Grab my friend and walk along the beach promenade to the restaurant that we’ve checked out earlier that day.. Stop for a moment to take a look at the sea.. it’s so blue, it’s hard to distinguish what is the sea and what is the sky. The horizon is not even there, it’s all melted into one. It’s just ..blue. I wonder if that is my favorite colour that Mediterranean Sea blue.
It’s so hot I nearly dream of winter home in Sweden, the icy cold harsh wind that bites you in the cheek, makes it all red, the snow is crisp and compact, it makes that squeaky noise each step you take.. The snow is newly fallen and untouched, nobody has walked on it yet, there’s no footprints, the snow rests heavy over the pine trees, and it’s so white and beautiful.
It’s my home but I also have a second home and nothing is quite like driving down those country roads of Ireland, There’s no other place where you can stop at the side of the road, watch the Atlantic sea crash into those majestic cliffs on the west coast, you turn 180 degrees and meet those hills, and if you would attempt to count, it would be at least five-hundred-and-sixty-seven different shades of green. It rains, allthe time… it hits you diagonally, from above, from the left and from the beneath, all angles, all at the same time and it soaks you to the bare skin, making you shiver and makes you feel so alive. The sensation of being alive. I want to take off my shoes and socks, stick my feet into that moist, lush grass. Wiggle.
“It’s a rare form of cancer, it’s so rare there is no Swedish name for it yet. It has been slow growing but we still need to start the treatment as soon as possible, you will start a course of chemo and radio therapy that will run for 6 weeks. You will then have a break for 4 weeks and we will evaluate and decide what will happen thereafter. “
All those colours , that’s the trick. That’s how it has to be done. That’s what I need to remember to visualise when the darkness takes over, when the black fog surrounds me, that awful fog where the demons run free, they’re so loud with their vicious voices and they suffocate me, making me doubt, making me think I can’t do this. That’s when have to visualise the colours. The colours can break and blend the black, I just need to imagine enough colours, grab enough brushes, paint enough strokes of paint.
That’s the trick.. that’s the clue how to make it out of the maze. How to keep the balance.
And I think I’ve decided. Emerald green is my favorite colour.
Why do they want me there that much earlier…? They’ve already given me an appointment.. Why the rush?
I had been waiting for weeks for the biopsy result. Out of everything that had happened this wait had been the hardest. Was it benign? Was it malignant?
A letter from the clinic arrived, they’d changed theappointment date with the doctor, nearly two weeks earlier than the first scheduled meeting.. Maybe because of the holiday times and they just happened to have a free slot.. yes, maybe that’s why.. or is it that urgent..?
Fidgeting fingers, sweaty palms, a heavy chest and a tight hard knot in my tummy.
”Hi, apologies for keeping you waiting.. How about we go sit down in my office.. you can just bring extra chairs from here”
We placed the chairs in a circle around the doctor’s desk, myself, my father and my mother sat down as he spoke;
”We have received the results from the pathologist….It was hard to detect but there are some cell division there.”
Cancer. Cancer. Even if I’d already imagined and feared that he would spell out that word about a houndreds of times the past few weeks.. That cold, horrible word cut me deep. Stabbed me.
The law of gravitation is one of the four fundamental forces of our universe.
It gives weight to all physical objects and grounds us.
But what happens when the earth underneath you opens up, a big gaping hole swallows you and you‘re free-falling? Can gravity pull you up to the surface again?
Finding out that I have cancer… It knocked me. I know them all now; panic attacks, paranoia, anxiety and despair.
My family… Always there, my wonderful parents, my amazing sisters. Jonna, Sonya and Julia. Soft strokes, warm hugs and loving kisses.
My Irish family, the Shiels’s. All my beautiful friends. Mairead. I have so many strong shoulders to lean and cry on.
My friends and family are my pillars. They hold up this monumental arch of me now when the big storm is threatening the construction but it’s also so very important with that one person. The one that barks up, gives you that hard burning slap across the face, chuck you your armour and drag and push you to the enemy front line and says ”You’ll have to face this head on now Vanessa” Dave, a.k.aThe Feral did that. He wouldn’t let me hide behind a rock, wouldn’t let me procrastinate. And, I knew he was right, I can’t stay in this place, it’s too dark. It drains me and it makes everything rot. It’s a dangerous place, I think it’s even more dangerous than the cancer itself.
I need to get out. I need to get out of this black hole. I need gravity to find me again.
““It Ain’t How Hard You Hit…It’s How Hard You Can Get Hit and Keep Moving Forward. It’s About How Much You Can Take And Keep Moving Forward!” -Rocky Balboa
One-two-three-four-five-six-seven-eight-nine-ten. Breathe. Lifting my right index finger..the left. Wiggle my toes. I CAN WIGGLE MY TOES! ON BOTH FEET! ALL TEN! The pain strikes again… starting over.. one-two-three…counting to ten, breathe, wiggle, repeat.
I can hear a distant voice ”Vanessa…Vanessa…How are you feeling?Do you need more pain relief?”
Dozing on and off. The pain is so severe but the morphine is injected directly into the drip, goes straight into the bloodstream. The relief is not far away but agony like this is hard to take even for just a few short moments.
The surgery took 4.5 hours, I woke up after 6.
I was in intensive care for the week that followed. I had stitches all over my head so I couldn’t move any facial muscles without excruciating pain. I’ve looked it up.. there are 53 different facial muscles and many of those are engaged when you smile and I had many reasons to smile…
The fact that I could fully move my left side was incredible… over exceeded the doctors and my family’s expectations. Every single day I take a moment when I’m thanking my body… one by one I thank my limbs, organs, my senses..out loud I say ”Thank you heart, lungs, liver, kidneys.. ” I keep going thanking my ”tendons, muscles, all my millions of cells that together construct my body. My body, my silent companion that has been serving me so well.
I love, love, love my body and what it is capable of: dance, run, jump, bend and stretch!
Being in intensive care means that every little detail of you is monitored, analysed, checked, reported. You’re soon swept into routines and the nurse rounds. I was very immobilised at first, turning in bed on my own was not an option and I was even being spoon-fed my dinner. You’re too tired to even worry about the lost independency, receiving help is more important than dignity and your own idea of whatpersonal integrity is. You get over that part fast…your body is no longer your own as you’ve been used to. The nurse staff were incredible though, so professional, made the situation as good as it possibly could.
I did have some odd things going on after surgery.. kept repeating the same questions, obsessing over certain things and not remembering the answers to the questions I’ve just asked. The orientation around the room that the surgeon had me warned about was now making sense, It was hard to grasp what was in front and back of me… such as grabbing something and bring it towards me would instead being me pushing it further away from me. The concept of getting dressed was also a bit of a task..tops and pants just have so many holes and where does all the body parts go? It would take me a few attempts to get dressed properly. I also had a few scary nights of nightmares and night terrors and out of body experiences ..and I’m not sure if it was the heavy medication but at times you felt so red-light-low on energy.. you can hear your own heartbeat but you’re not sure if its enough. Do I have enough beats to last me the day?
I did have enough heart beats and eventually I was even allowed going home to my dad’s for weekend breaks and finally I was discharged as an outpatient. It was good to be home, slowly the orientation issue and the memory-loss started to disappear. It’s unbelievable that you can go through such extreme brain trauma with close to none impacts. The one problem I got is my vision, there were many blind spots but my last eye test showed massive improvements. I still have some double-vision but there are glasses that can correct that, it’s a very small price to pay… After all, I can wiggle my toes!
It was good to leave the hospital and come home to safety but now was when the long wait begun
”We removed everything we could see.The tumour behaved well and nothing showed up on the initial biopsy test, it’s been sent for further analysis for microscopic testing. These tests are done in several stages that takes time. We expect a result in the next few weeks.”
By following common procedure, you meet with your surgeon prior to your operation.”We will operate on you tomorrow and as you know, the tumour is quite large and it is situated in an unusual part of the brain that is very difficult to access”
Göran, my surgeon, showed us where they would open up my head. I thought they would literally lift off my scull but apparently it doesn’t really work like that.
”In the field of neurosurgery, this is considered the most difficult job to do”
”I’m one of few here who has performed this once before.
I remember the words he said but not much else. My family has told me that my dad was with me when he came to visit my bedside. I just sat quiet listening, I’ve learnt after having a number of these difficult conversations that I normally keep my cool, my reactions come afterwards.
”We have been granted all the resources we have requested. There wil be a team with us who’s job is to watch a monitor and navigate as we go along on a zoomed in camera
There will also be aneasthetic doctors present. There will be many people there that need to be confident in the procedure. It can occur a situation whereby we can’t continue for different reasons and have to stop the operation before the tumour has been removed”
Stakes so high for something that might not even work. He had more information;
”We will move very close to crucucial and sensitive veins that we can’t touch. We will only have about 5millimeters space to maneuver in. ”
I wanted to run away. Scream nooooo I’m out! and call it a day, but you can’t. Life or death. Be brave. I’ve whispered that so many times to myself. Be brave.
”The risks are many and you need to be informed about possible detriments you may suffer”
It was a long list.
”It’s quite possible that you’ll get some weakness in the left side of your body. You might also get some memoryloss, not typically total but short-term memory loss… it shouldnt however cause any personality disorders.
”It’s also quite common finding difficulties with the orientation in the room”
I Remember that I couldnt understand what he meant with the orientation comment….but it would that would make sense with time, I also thought there was enough there that I did understand and to be honest, It was all a bit too much to comprehend to be bothered about the ins and outs of everything he said.
I wished, hoped and prayed for my life. I prayed please, please, please, don’t make me a vegetable.
It was drawing nearer to time. As always, you’re fasting before surgery, it’s frustrating not being allowed to eat or drink..every inch of youur body is being scrubbed from head to toe, everything has to be clinically clean. Strong chemical soaps and rough sponges. You’re told what time you’ll be collected. I thanked Göran, fist bumped him just like I’ve done with every surgeon I’ve had these meetings with. Obviously you have to fist bump the true superheroes of this world!
I listen to a lot of music and this time was no different (thank you Niamh for my spotify list). I listened to similar music that I listen to in the gym to pump myself up, heavy gangsta rap and rock music.
The nurses showed up to roll me down, my family met up with us and walked along in the corridor, I gave them hugs and kisses. Said I love them. Sent a few text messages.
The anesthetic doctor arrived, gently adjusting the mask. Deep breathing. Lil’ Wayne in my ear. Gone.
We landed at around midnight, my father came to collect us and we all went to my sister’s place in Uppsala. My family had been by my side every day for the last 2 weeks. Long days of uncertainties. Long nights in waiting rooms. My sisters having to translate complex medical terminology to my parents who’s english would be a bit limited. They were there 24/7, sat up 2h rotas for night shifts and then changing over for the next person to get a couple of hours sleep. Someone was always by my bedside.
It was good being back on homeground , it meant that my parents could fully understand what was happening. I could start to see how they were getting tired, how they felt out of control. For this reason I was so happy we were back in Sweden, they could finally get answers to their questions and relax in a system that is familiar to them. I did miss the nurses and my doctors in Cork though. They saved my life. How do you thank people who saves your life?
I arrived to Akademiska in Uppsala the following morning, there was some confusion in the transfer and because I was coming from overseas I was an out patient and had to be admitted through A&E. It was a long day, they wanted new MRI scans and I was seen by neuro doctors, an eye specialist and was being tested for anti resistant bacteria. I was finally admitted into a ward. Nurses greeted me and I got settled into my new room but it wasn’t long until a doctor arrived ”The MRI show a small bleed from the tumour, we don’t have full detail from the journals from Cork to see if this is from your previous surgery or if this is more recent, we are also concerned that your shunt might not be working as it should as the pressure in your brain has increased ..we will bring you for observation in the ICU and we might need to bring you for surgery to replace the shunt with temporarly drains tomorrow”
Another surgery. again. I was tired. Exhausted and scared. When will this nightmare end?
I was immediately hooked up to several machines, beeping sounds, a constant reminder that life is no longerto take for granted. I was overwhelmed. Type of moment when all you need is the comfort from your mother, and she was there. She allowed me to regress, to be 7 years old and scared of the dark. She sat by my bed in the midst of all those machines and stroke my cheek, she was telling me stories about the cabin in Dalarna, the cabin where I’ve spent so many childhood summers in. It’s in the deepest of the woods. There is no electricity, no running water, only a well. There are no other houses just trees, more trees and a quiet, still lake. It’s wilderness and it’s so beautiful and peaceful. She told me she had gotten a canoe and she told me how we would wait til the sun would start to set and we would then paddle around the shore of the lake and listen to the echo from the loon, a mesmerising bird sound. She settled me that night and I still visualise that place and the canot whenever fear grab hold of me.
I had my third surgery the day after, a 15 minute procedure to put in drains to replace the work of the faulty shunt.
I bounced back quick and after the weekend past they were happy for me to leave the ICU
We were informed that my major surgery, The crucial one to remove my braintumour was scheduled later that week.
This would be the big finale of the build up over the weeks gone, the crescendo. The moment you wish never would have had to happen but that you also just want to be overdone with. The job that would have to be done to save my life. Being under complete and utter control of others is sometimes a relief. You have no choice, you just have to run with the wave. There is no going back, it is already happening.
The few days I had I used to rest and to mentally prepare. To build trust that the surgon’s are usually preeetty clever people that knows how to do stuff. I spent time with my beautiful family that would make me shriek with laughter even in the heaviest of times.
The coming thursday, the D day, was fast approaching. This was it.
Well, I’m long past 48h and still alive and kicking.
The ambulance took me from Limerick to Cork in less than an hour, they closed down the city and Charlotte bridge just for me…I call that an achievement, first time in an ambulance just has to be done in style
Writing about all this is very exposing but it’s also a way for me to process everything. Writing about it publically makes me consider and taste the words before putting them out there, it makes me truly take it in. Digest.
It’s interesting how the human psyche reacts in a time of crisis. When I was told that I may only have hours left, my body first went into some sort of shock, my legs started bouncing uncontrollably, I tried to press them down tight but they just kept bouncing, a little bit like your one in the exorcist! Then, all the sudden calm washed over me. My head was cleared. I could act and be veeery matter of fact ”Hi Pappa, it’s me..something happened..”
I made many phone calls in that ambulance. What do you tell people when you get forced to accept that death is knocking on the door?
It was difficult calling all my family, all my friends to tell them what I wanted them to know, how much I love them and how much they mean to me. Two of my friends were heavily pregnant and ready to pop but the thought of not talking to them again was not an option, I had to call.
My mother, father and my 3 sisters all living in different places in Sweden pulled together superfast, organised to meet in Stockholm to go to the airport for the fastest route to Cork, they flew the following morning to London to change to Cork. The flight got delayed and they missed the Cork flight, it wasn’t easy for them, they didn’t know what kind of reality they were going to land into.
I dodged the bullet that time. And i’ve dodged plenty of bullets since.
My family came before they rolled me in for surgery no. 1(of a total 4) The tumour had caused such pressure so that fluids in the brain couldn’t pass.
They needed to insert a shunt and also access the tumour to get a biopsy sample.
This is usually a fairly minor procedure, but when they went in the tumour started to bleed and they couldn’t stop it at first and as I was under general anesthetic (well obviously..they were inside my brain), time was starting to run out. My family was being told that if I didnt wake up within an hour they would have to open me up fully and remove the tumour. You never want a rushed emergency surgery of the brain.. That’s when saving a life become first priority, quality of life is not.
Waking up from brain surgery is …painful. There is nothing pretty about it. Thank god for morphine.
My neurosurgeon Professor O’sullivan came to visit me in ICU together with a few of his team, they gave me a hug and was happy that I was doing well, said I’d frighten them and aged them about 10 years.. oops! #foreverdramaqueen
I recovered within a few days, Professor O’sullivan asked me where I came from, saying that he was very familiar with Uppsala and that the university hospital there is famous worldwide and have the best neurosurgons in the world. We all agreed that going home and transfer me to Akademiska sjukhuset for my major surgery would be the best option for me. The surgons, especially with such help from a lovely surgeon Lucy, helped us so much in contacting the hospital to organise the transfer. I had a ct scan to ensure that the shunt was working properly for the pressure in the air and soon after I was cleared to travel. So after 2 weeks being hospitalised in cork I was going home to Sweden. I flew in first class #alwaysthequeen together with my mother and my sisters Sonya and Julia and the following day I was admitted to ICU again and life would take a few more turns for me. This is all a long story and I will tell it fully on this blog but it might take some time cause of my lack of ability to keep things short and sweet 😉
I will get straight to the point. No point in beating around the bush, it all started a little over 2 months ago. Life took a pretty sharp turn..or more of a full on collission that I haven’t fully come to terms with yet.
I had started getting migraines that was out of this world, By now, I definetely know what pain is and I would still mark this as 10 out of 10 on the fuuuucking-hell-this-is-sore-scale. I went to the doctor several times during this time and was put on quite heavy painkillers and also started seeing a physio who had seen this problem before,,, muscle spasms that causes headaches, we did a lot of work over a few weeks and by the time I was going on my holidays I felt fine ..for a little while.
I had just come back from a week in Malta. It was an unpleasant trip for many reasons but mostly because I fell very ill, I had eaten mussels for dinner and shortly after I got food poisioned.., it lasted for days. It eventually stoped and it was time to go home, My vision had started getting very blurred but I was thinking that the heat and the vomiting had taken its toll on me.
Once I was back in Ireland and back working my sight hadn’t improved, I started changing the font size on my computer to be able to see. I also started getting ill again, after a few pushes from friends and family I finally went to my GP, I could barely see the top letters of the eye test board and I would have had a perfect vision before. My gp told me it was time to go to the A&E.
As the drama queen I am I thought this was major..i hadnt been to the a&e since preschool years..I´m never sick!
.. if I only known what was coming my way
I first met with a young doctor who examined my eyes, bright lamp, more examinations, asked me to clap and turn my hands as fast as I could, asked me if I’d taken any recreational drugs. ”what!? no never.. I barely even drink” heasked me to walk across the floor and keep my balance , he went off to discuss with his collegue who came to ask a couple of more strange questions. They left and came back to say that I was going to see an eye doctor.
It all went very fast from this moment on.
The eye doc did some more tests, bright beaming lamps in my eyes.
”Am I going blind?” I asked a nervously ”We will have to finnish the examination before I can say anything” ..why is he so sharp? what is going on?
”I can see that there is something pressing against your optical nerve but I dont know what it is, you will now go back to a&e and they will send you for a scan”
…at this point i was terrified that i was going blind but my mind didnt really think further than that, I didnt connect the odd things that had happpened lately and all those symptoms going back months.
”there is nothing wrong with me im never sick and I have a very healthy lifestyle. I´m not sick,,, ever. never.. I´m not going blind…did i get my drink spiked in malta without knowing it?..but i didnt drink more than a few glasses…no… this must be some sort of confusion” my mind was working hard reasoning with me,telling me not to worry.
A doctor called me as soon as I arrived back from the ct scan
”Vanessa, do you have anyone with you here today?”
”…Yes my friend is here, he is waiting outside this room”
”Do you want to call him in here cause I am going to have to share some very difficult news with you”
I’m so grateful I had my friend Timmy and even his family there. I get upset over the thought of people who don’t have anyone to support them in situations like this
”We have looked at the scan and found that you have a quite large tumour in your brain and it’ s causing very high pressure that is very dangerous”
Silence. tearing seconds of silence. that type of silence they sometimes capture in movies when everything moves in slow motion. That exact silence. only difference was that this was real life, no movie this time.
”Do you have your family here in ireland?”
”No they’re all in Sweden”
”You might want to contact them and ask them to come here. There is an ambulance here to take you to Cork university hospital and they will do surgery on you tonight”
”Am I going to die?
”There is a risk of that”
I dont remember much detail from the last few months But this room, that hospital bed without any bed sheets,that black bare plastic mattress, the lovely doctor who had first seemed so upbeat, so full of energy but who now sat there, with worry across her face,,, this memory is crystal clear and it has been on replay every day since
”In worst case scenario..how much time do I have left?”
I have decided to start a blog, I have time on my hands and a lot of updates so thought this could be a good way to share them,
I will write in English as a lot of my friends live in Ireland and I will see going forward if I will translate into Swedish a.s well
My name is Vanessa, im 32 years old, I’ve lived the last 9 years in the beautiful republic of Ireland that I love so dearly I am however currently in Sweden, my home. I´m here for medical treatment and that’s the main reason for starting this blog. I will also write about other things, sharing my thoughts, my everyday life and obviously about my dogs <3