December 8, 2012 | Today's to do list

Don’t vomit

Poop

Walk up 3 flights of stairs

Reply to 3 emails

Take all my medicine. 

Journal

Find some sunshine 

Let everyone know I’m okay

Talk to dad

Well wishes to Poppa

Laugh 

Start spelling words wright=  practice.

Read the news

Eat chocolate 

Shower

Right(that’s wrong) a list of things I am thankful for

Celebrate being alive

Seriously, B, poop already. 

(Sorry for these not being nice inspirational goals)

December 8, 2012 | A Little Off The Top: James

Today I got a haircut, I think it's the finest I've ever had. Here's to you B.

I'll try not to bore you with my musings on life, but perhaps I can share a short insight. There seem to be a million theologies, philosophies, and ideologies for where we come from, what we're doing here, and where we'll end up. Whether we meet in the sweet by and by, are reincarnated through transforming energy, or become Gods of our own device, there seems to be proselytizers for any who will have them. Does it matter which one we choose? Not to me. However, just as I choose not to window shop for afterlives, I also have no interest in condemning others' beliefs. It makes little difference to me whether my neighbors attend the Native American Church, or the tabernacle. That is, as long as they possess a sense of dignity and loving respect for the world around them. While I do not believe in atheists, I find this to be a fitting time to share my personal observations as an agnostic.

Bethany's condition comes as a grave indicator to me of the incredible beauty in the world. I suppose in times like these it would be simple enough to shake my fists and cry into the heavens, God Damn you! Perhaps I could wallow in despair, break my knuckles in anger, or drown myself in ecstasy to escape the absurdity of such a situation. I suppose it's also a fitting time for a 'come to Jesus moment' as well, bowing lowly and begging forgiveness, asking that my transgressions be relieved, and asking to be taken back into faithful service. Cliches come easy in times like these, “It's so unfair” or “how could this happen to such a wonderful person?” Yet I find little reward in these circles, and refuse to stagnate in bitterness. I cannot be afraid, and I cannot retreat. It makes little sense to do so, and although I can't quite find the logic in all of this yet, I'll keep trying.

One line of reasoning does occur to me in these sifting hours. Suppose we take the most cold approach to this entire conundrum, and view life as nothing but straightforward. Say for argument's sake, we take away the archangels, sacred cows, and origin stories. Let's assume for just a moment that there is nothing after we die, no one cares what sins we commit, and that our inclinations to hang tooth and nail to every scrap of life are simply genetic programmings passed from millions upon millions of years of organisms with a will to live outcompeting their more complacent counterparts. Remove the symbolism, remove the glass panes, and just view this thing in the moment. Sure brain cancer changes some of our plans. Of course I don't like to think about the labyrinth of possibilities. But what's really happening? Here. Now. Simple. I'm in love. I've found the person who makes the most sense to me in the entire world, and she's alive. We're alive, right now. Even more so, there are things to celebrate every single day. And I don't mean in a stale, glass half full kind of way. I mean really celebrate.

Today started with Bethany vomiting her breakfast in her lap, sitting cross-legged on the bed. She was not smiling, nor was she happy to take pills, sit up, eat, sleep, talk, or do much of anything else. Not a great start, but it left a hell of a lot of room for improvement. We thought we might travel back to Moscow today. That was a bit presumptuous. Instead we extended our stay and focused on healing. We cleaned Bethany, the bed, the clothes, and the dishes. Then we focused on tidying the room, organizing her personal pharmacy, and settling into some simple goals and priorities for the day. A few hours later, with another attempt at medication and food, Bethany once again heaved our efforts into the toilet. That's a start right there. It may seem simple, but having someone vomit into the bowl is a lot nicer than on herself. Furthermore, we had a place to start. With patience and love, we steadily made it through the day finishing Bethany's pill regiment, holding down food, and getting some good sleep. We also were able to start exercising, making multiple trips scooting up and down the flights of stairs. To top things off we were able to start carrying conversation, and smiling once again. I played secretary while she napped, filing through the incredible lengths of loving support that people all over the entire world send this miracle of a woman. And lastly, we laughed. All of us, together, in pure joy and overwhelming love. Those were all moments worthy of celebration.

When you watch the other half of your inner being dramatically shift into an opiate zombie, paralyzed with pain and drowsiness, bedridden and fragile, a part of you comes alive that you didn't realize existed before. Whether it's a soul, a heart, synapses firing in the right spot, or a natural inclination to fend for your family, this thing inside of you shudders in breathtaking awe and compassion for the beauty before you. The tough, hungry little girl with a swollen face and scars running a zigzagged railroad across her shaved head, suddenly becomes more beautiful than any starlet to grace a magazine cover ever dared to be. And when she laughs, you want to cry, those salty tears that come when you feel Atlas' burden beginning to lift. I'd say that's worth celebrating. I'd say staring into the mirror as the barber gives you your solidarity cut, and the man in the neighboring chair covers your bill when he overhears the motivation for the haircut, that's worth celebrating.

If for no other reason, is not the simple beauty and mystery of every day compelling enough to live for? Regardless of whether we live with divine direction or not. Is the love of life not reason enough?

Whether one believes in God has no bearing, we all live by some form of dogma or another. It matters not whether it's bestowed upon us from an elderly virgin in a golden throne, or the enculturation processes of life. We all have our codes. For me, I believe in God. I just don't call her the same name as others. My God doesn't carry a staff or have a flowing beard, sitting on clouds to judge the quick and the dead. My God reaches peaks through suffocating cloud cover, is made of the deepest greens and the bluest blues. She is enormous, and incomprehensible. She is simple and sweet with tranquility that flows and ebbs, and vile with tempests that rage in furious horror. My God is absolutely, unfathomably gorgeous, and worth celebrating.

Furthermore, I am a reverent man. If ever there is something a god would like for us in our magnificent days, it would be to appreciate the living artwork and beauty present in every single moment, of every day. I cannot weep anymore, and pity serves no one. The love of my life loves life, and so shall I.

December 12, 2012 | Rainy Skies and Beautiful People

Hello!

Well, we're back in grey Seattle. Still with the coolest gang of people in the world - James by my side, my mum and her boyfriend Guy, the cutest couple ever (Well...second to James and I of course).

Today we are finding out the pathology report (eek!) and having my cool, rockstar staples removed. What we find out in the next few hours will determine the course of action we'll take in life over the next few years - perhaps longer.

There is a possibility that things may be able to remain as normal ("normal" is a funny word right now), and there is also a possibility we may have to move to New Zealand, depending on treatment options. After we've chatted about it with the doc and each other, I'll let you know.

I've been feeling better every day. Still waking with awful headaches and my brain is still making funny noises and moving (it's creepy) but to be honest, I'm enjoying being bald. It's fortunate I've always enjoyed social experiments and pushing aesthetic boundaries.

We were in a sweet little French restaurant last night and a thin, blonde, heavily made-up waitress was staring at my head for a lot of the meal. I felt a little shaken, but smiled anyway. None of that stuff seems to matter anymore, as I truly have experienced the very best of humanity throughout all this, and have never so much believed in it.

As a friend said last night, in a way this has been a reminder of all the love that's out there, and it's just a shame it takes something like this to bring it out. But I don't really think it's a shame. I know both love and pain at a much deeper level now and will always be grateful for it.

We've had so many questions we've struggled to articulate,  and any answers we have been able to find have been typically vague. We'll make sure to bombard them with questions today.

I can't help wondering what went with the part of my brain they took out - I've joked with James it was 'urgency' as I've been rather slow lately, but I'm sure it's just circumstantial. Life just seems to slow down after something like this. I'm floating around like a ghost.

I guess we all need reminders to slow down... and trust that life will all work out. This was a pretty effective one. I've been so lucky to have people to trust and lean on during this time, allowing me to float slowly in this mist I find myself in. They've been wonderful.

Alright, we're off, back to the hospital. See you later! 

January 14, 2013 | Straight Talk

Cancer has always been such a mysterious, clouded word that seemed to call for whispered tones if it were to be mentioned at all. The very word, cancer, has a bitter taste.  Even in my own family, it was a big hush-hush that no one spoke of. Considering this, it was surprisingly encouraging to have my cousin honestly tell me about her experience with the C word after my asking.

For weeks after losing my hair I’ve had people glance and look away hurriedly, the girl with no hair only spoken of by small, untrained children and drunk teens at the park. I loved that. I wished that more people would openly ask, “why is your hair so short?” or other questions that are often considered 'rude'. It’s so much better than having people look at me then glance quickly away.

As much as I enjoy writing ‘fluff’, I was reminded by the interest of my dear friend Nicola that cancer is something people hear of often but don’t really know that much about unless we, or a close one, have had it. It’s time to do some science. I’ve avoided my bulging medical file for a long time. It currently sits in a plastic drawer on top of a chest of drawers downstairs in ‘the den’, a large basement-type room that James and I have been staying in (although it’s now just me and my book). I’m just about to go downstairs and collect it, and unveil this thing that I have managed to so far avoid.

Okay, here we go. I have opened it.

Lying on top is a wad of paperwork from fertility associates. Like previously mentioned, I’m currently undergoing IVF. It’s two weeks of self-injecting and preparing syringes, but by now I feel used to doing things that aren’t pleasant. And plus, it’s nice to be doing something medical that is positive.

After these consent forms, I reach the pile of bills. We stashed them away in here after reading them – about $80,000 with insurance ‘still pending’. It’s funny to see charges for medical mistakes, more charges for pain relief, and then the bills to fix them all sitting together. I guess you just have to see it all as a little comedic.

Below these lovely items, I find copies of my referral from UW medicine to NZ doctors. The reason for the urgent request reads:

“21 YR OLD FEMALE W/DX OF ANAPLASTIC OLIGODENDROGLIOMA. MOVING BACK TO NZ TO PURSUE TREATMENTS POST SURGERY.”

After this I move on to my ‘Outpatient record: Final Report’. It is written by Dr. Chamberlain, and begins “at Dr. Dan Silbergeld’s request, I had the pleasure of seeing Bethany Lowe, her husband, James, her mother, Melanie, and her mothers friend, Guy, in consultation today in Neuro-Oncology clinic at the University of Washington on December 12, 2012. Bethany is a 21-year-old, left handed, New Zealand female who developed blurry vision in her right eye and progressive headaches prompting MR imaging that demonstrated noncontrast-enhancing tumor in her right anterior frontal pole. She underwent resective surgery at the University of Washington on December 4, 2012, and, based on postoperative imaging, had an image-verified complete resection of a noncontrast enhancing intra-axial tumour. Histopathology was consistent with anaplastic oligodendroglioma that manifested polysomy with relative deletion as well as IDH-1 mutation. They present today, approximately 8 days postoperatively, for consideration of postsurgery therapy. She is otherwise neurologically intact* and fully functional in activities of daily living.”

The report then goes through my family history (null), social history (non-smoker and drug taker, only social drinker), allergies (null), surgical history (null), review of bodily systems (all 100%), a physical exam (good), nuerological exam (good). In the ‘plan’ section, after a whole lot of medical jargon suggesting radiation therapy followed by PCV chemotherapy treatment, it reads, “A median survival in such a patient group is 12 to 14 years as compared to 7 years with radiation therapy only as primary therapy and reserving chemotherapy at time of disease recurrence.” Wikipedia says 3-5 years – to this, I regret trusting Wikipedia in the past and choose to disbelieve it.

So there it is. It then discusses the doctor’s reason for preferring PCV treatment to the newer, less tested, Temozolmide. Apparently next year there will be a large international clinical trial of this new drug, which is half the toxicity of the classic PCV. PCV chemotherapy is the classic ‘one size fits all’ drug that is used for most high-grade brain tumours. It shows no mercy to all other rapidly growing cells in the body. Hence, the killing of hair cells and sex cells (premature menopause).

PREOPERATIVE DIAGNOSIS: Right frontal brain tumor

POSTOPERATIVE DIAGNOSIS: Right frontal glioma

Wow. I just stumbled across the description of the surgery. “The head was shaved, prepped and draped in normal sterile fashion…we used a sub-pial technique along the mid line, exposing the cingulated sulcus and the pericallosal artery…” etc. It continues like this, sterile words describing the patient as an object (“I am titaaaaniiuuum” my mum began singing to me when she found out that I have titanium plates holding my skull together). It’s so strange reading this, and anaesthesia continues to amaze me. Some people say they can remember falling asleep in general anaesthesia, I remember absolutely nothing. Granted, for brain surgery they also give you pre-anaesthesia ‘relaxation’ drugs, but it’s still an overwhelming read.

And now we are here at the end of the first day of radiation treatment. I sit at the computer in the study in Wellington, New Zealand listening to my mum, her partner and a friend talking about my tumor. It’s the same conversation. Mum is asking why not a single person has asked me what I was doing weeks to months before the diagnosis, which is when the tumor apparently began to grow. In a way, I’m with her on that. I know those in the medical field like to plays things safe and not make claims, but surely someone would at least ask. Is there not a chance that people with oligodendroglioma’s having similarities in lifestyle or situations?

Radiation isn’t fun. I was looking forward to it and went in with a good attitude, but I think I would be kidding myself if that was ‘fun’. Tomorrow, I will be able to take in music to listen to in the room in an attempt to drown out the droning sound of the radiation beams permeating my skull. It’s a bit perturbing. But all is well, and there are only 29 days of it to go. Symptoms should begin to kick in soon enough and with radiation to the head, they are mostly permanent. There is a good chance I will become more like a male long term – losing the ability to multitask and some computational struggles along with short-term memory. Personally, I don’t think a lack of ability to multitask and to have short-term memory really affects happiness levels anyway, so it doesn’t really concern me. I will keep my brain active and used though, and fight these effects.  The hair loss from radiation is permanent and will only be in the spots where the beam goes in and comes out. 

After six weeks of radiation at Capital and Coast District Health Board under Dr. David Hamilton (he is great), I’ll have a three-week break before the even-less-pleasant part, chemotherapy. This will go on for about eight months. So I’ll be in NZ for this year for sure.

To be honest, I didn’t believe it was really a tumour until not too long ago, and it still amazes me even now that it’s real. It’s been good to force myself to read the reports and know that they aren’t simply radiating regular brain. I’ll get back to the fluff soon for lighter reading, sorry!

* James would be right to question this.  

January 21, 2013 | Wouldn't Change a Thing

If you could go back and change something, what would it be?

The question has been meandering around my mind recently. Would I have not used my cell phone in Togo? Would I have not gone for the summer in Togo when the tumor began growing? Perhaps that would spare this pain. Going even further, would I not have gone to the US at all? Perhaps if I had stayed home I would have been healthier and not exposed to whatever environmental trigger caused it to begin. Would I have gone into the hospital at the first headache? Would I eat more anti-carcinogenic foods, or stringently follow books on cancer prevention?

I wouldn’t.

Cancer sucks. It’s treatment sucks. Being rendered infertile sucks. But to be honest, clichés aside, I do believe the whole thing is an invaluable lesson. Nothing else would have forced me to move back to New Zealand for a year or caused me to slow down and contemplate what really matters in life. Before, I may have been reading books about slowing down and the global slow movement, but living slowly was simply a sideline activity in a busy, driven life. Since, I’ve never been so aware of the love and support that surrounds James and me, and my cynicism has been gently replaced by a faith and hope in humanity.

I have always struggled with vulnerability (this trait inherited genetically). My lecturer in a Personal and Exploratory Writing course last semester would discuss with me about why I put up walls of armour in life and in writing, and tend to try to be and appear strong and avoid conflict both within and inter-personally. It’s true, I’m no good at fighting, and usually don’t see the point in conflict. It’s also true that for the past three years I probably appeared as some strong young woman out conquering the world, immune to fear and loneliness.

World traveling and skydiving and all those things don’t make a person brave. They do help one develop bravery, and for something such as bravery to intentionally be developed there must be a perceived lack. Perhaps I was trying to prove something. Perhaps I was trying to be something I wasn’t. Perhaps I had forgotten what life is all about, got caught up in the race for success and saving the world without stopping to take a deep breath…perhaps. Don’t get me wrong, my old life was absolutely wonderful and I don’t ever want to deny that. But in this new chapter, I am grateful to take part in the lower levels of life…in the pain that millions are suffering each day that I never truly understood, in the despair that many women feel worldwide when unable to have children.

And there’s a lot more to learn. I don’t know what I will think looking back from within the jagged tracks of chemotherapy. Perhaps I will scoff at the idea of being grateful for the situation that cancer presents. In many ways, I have a long way to go. This is a journey I’m deeply grateful for, and profoundly thankful that I get to share it with the ones I love. Some people find the love of a God during illness, but I am now a student of the love of humanity…. and I wouldn’t change a thing.

February 21, 2013 | Hair #2

We had a rather special visit from Jenny Rankin this week. Amongst the delight of swimming naked on the beach where she and her husband lived 22 years ago with my parents (me growing in mum's tum) girly massage breaks and laughter over wine, Jenny encouraged James and I to begin the transformation of our words into images, both moving and still. Now me being a technophobe, I found this rather daunting.

The reason why I am excited, however, is the fact that I often find myself unable to adequately express the reality of our life here simply in words. Each visitor we had had here, including Jenny, has found it pleasantly refreshing to join us in the daily routine of radiation. While the machine is certainly space-age and a little intimidating, seeing the smiles on everyones faces and the evident support of all the staff, alongside our own happiness, the picture of treatment is a lot more encouraging than one may imagine.

It's entirely possible to be happy even when tired, or in pain. I know I've said this before, but now we will begin to show you. The first way in which I'll show you is displaying the issue of baldness and wigs. Now I know that the prospect of having permanent hair loss may seem a little depressing to some, but I've done a cost/benefit analysis and come to the conclusion that no hair is better than hair.

Here are my reasons:

1) You can choose the hair to suit your outfit/mood/plans, rather than having to do the opposite.
2) You will never have a bad hair day
3) If you want to change the colour of your hair, it's not damaging or expensive (or time consuming) to do so.
4) You can confuse people by changing hair secretly at a party
5) It's quicker to shower
6) You hair won't get tangled while sleeping
7) A wig keeps you nice and warm when it's cool
8) You are not defined by your hair
9) You can play different roles
10) You can try different styles and colours than you would usually be afraid to
11) It gives you a fresh perspective of what physical aesthetics really are, and what the value of hair really is.

James took these photos with our new camera that Jenny gave us:

The wig that used to be my cousin Evie's

...and her other one

The wig that the NZ government paid for (thanks!)

Cheapies from the US (everything there costs less)

Evie's again

I had the NZ one cut by a hairdresser as it was too similar to the other. 

Keep an eye out for more photos and eventually video - I promise they won't all be about hair!

April 3, 2013 | To Jen

Oh Jen…

Here I am. You’ve caught me in a good time to write to you, because I’m feeling shitty. I know that’s a weird thing to say, but I know when I’m feeling good I have a tendency to glaze over things and tell you that life is wonderful and fabulous and every moment sparkles with the sheer joy of being alive.

But you deserve more than that. 

No, I am alone in this house I don't feel at home in, staring at my computer, and I had to force myself to open it to do things because all I really feel like doing is lying on the nice, big, fluffy rug. 

I know I should listen to music or something to uplift my spirits and chase away the silence that surrounds me, but honestly, I can’t be bothered getting up to get headphones or turn the stereo on.

So, silence it is. Sprinkle in some distant car and chainsaw sounds, people preparing for winter. Ralph just barked. Little laptop keys tip-tapping away to you. A bird just sang – they like to do that. (Yeah, I just said that.)

The ‘sickness’ I feel from chemo is so hard to describe. Usually when I’ve had something wrong with me in the past it was something you can put words to, you know? Like a sore stomach, or head, or itchy something-or-other, queasiness, or period cramps… but this is so hard to describe. My body just feels worn out, like it’s falling apart. It's an assortment of little complaints (the very word makes me wince): aching jaw when I eat, a bit of a headache when I move my head, some light sensitivity, feeling nauseous with sudden movement, tingly fingers, slightly yet eternally sore muscles, always being a little tired, mouth stinging from anything acidic, sensitive teeth. 
But everything is so minor they're not worth complaining about. So shitty will have to do as a descriptor. 

James is at work today – it’s his first day. Yes, he got a job!!!! I can’t explain how excited I am for him. It’s hurt me to see his frustration in being idle and not having a social life here. It hurts me because I see it’s hard for him, but I think the worst part might be my guilt. I’ve watched his struggle and my mind whispers to me “this is your fault”. Constantly. I don’t know what to do to remedy it sometimes. Being positive doesn’t seem to work, because who wants someone being smiley and upbeat when you’re feeling frustrated? It just makes me seem annoying and insensitive. I just don’t know what else to do or how else to be.

I got distracted. Sorry. I was talking about his job and thinking about when he didn’t have it. It’s so silly to mope about the past isn’t it? But so easy to do. Anyway, why I’m so excited about this job is that it’s his first serious job if you don’t include restaurants. I mean, not that I think hospitality isn’t very important (it is!), but I’ll admit to being a bit relieved that he’s not working late nights/early mornings, especially full time. He is working for the Ministry of Business, Innovation and Employment in the IT department as a Project Analyst, which sounds super technical but they say the most important thing is people skills, which fortunately enough he’s got! It’s not minimum wage either (minimum is $14.50 an hour here, so do come!), which is sweet, and there’s room to grow. Ooh, I’m so happy for him!

It made me so warm and fuzzy inside when you told me you had got to know James a lot better when he came back last time. It makes me think back to that time in Togo when we were staying in that weird house in Accra at the start of the whole thing, and you told me you were unsure about him not because you didn’t like him, but that you couldn’t help being protective of me. I get that. But I’m so glad you were finally able to experience how fabulous he is, and how you really can trust him to take good care of me while not taking me away from you and my friends. Well, I guess I am away from you and friends. :(

Did I tell you I have some friends here now? You can probably count them all on one hand, but still, it’s an improvement! James and I had a dinner party last weekend, and I can’t begin to explain how lovely it was. We had over Joe, an old family friend (he was one of the two brothers I was supposed to marry, but he's into boys so there’s a pursuit saved, haha!), and another couple of girls with a boyfriends who were from New Plymouth and are in the theatre world here. 

I didn’t really know them in sweet little NP, but I prefer being able to start afresh and not have to deal with fleeing the remnants of my old self. That's probably why I'm not in contact with many folks from the hometown. It was Easter weekend (well, obviously, you know that part) so we cooked a massive meal for them, and set up an Easter egg hunt around the house for between courses. We had the fire crackling and all sat around with wine on the rug by the fire…

Yeah, that nice big fluffy rug!! I just went and had a lie on it and talked to Kot (who is sad she didn’t get to say goodbye to you) on Skype (which we will have to do)…oh what a nostalgic, heart-aching day! I may talk about how much I enjoy dinner parties with new friends, but nothing can compare to the friendships I had in Moscow. I miss feeling like I’m part of a community. Talking of Moscow, you must have left by now… tell me all about it! How do you feel?

I know feelings are so fickle, but I think sometimes in our distrust of them we can overlook how much wisdom they actually contain. Like, if something doesn’t ‘feel’ right, it probably isn’t right, you know what I mean. Probably more than I do, as you’ve always been far more in tune with yourself and your feelings than I have. How does it feel being back with family? I wish it were as easy as it seems like it should be. On the surface, and to other people, it may look like it would be super easy for someone our age to re-integrate our selves back with our parents, but it’s not exactly an "aaaah, so good to be back" experience. It feels like it takes more effort to be ourselves, the selves we spent the last few years getting to know. I wish you and your lovely parents all the best (I miss them!).

Talking of family, how is Molly? You know, I have always thought of her and care about her. Like you with Aden! Who, I must tell you, is getting on fabulously in Stratford, as much as he can. I love him for the person he is and has become. I love that he catches up with dad all the time. In a book I was reading the other day (which you will like and relate to, it’s called ‘Sister’ by Rosamund Lupton) the older sister realizes that although she had always thought she was being the ‘responsible sibling’ by going off to the US and being the over-achiever, she realizes that her younger sister, an aspiring hippy artist who stayed near her parents, was really the one who was taking on the burden (in a good sense) of their parents. I can see now that it's not intrinsically glamorous to take off into the world. 

It’s funny how so often what society views as ‘success’ can be at odds with familial bonds. It's a great big balancing act, isn't it - happiness, values, community, success...

Anyway, I’ve been rambling. Sorry for talking so much. There’s just not much else I feel like doing today to be honest. I hope you will forgive me for posting this publicly. I know you said to me that I should be totally honest with you and say things I wouldn’t say on my blog, but as I was writing this I realized that this is just what I want to be sharing with people. I want to write honestly, in fact don't really see the point in anything otherwise, yet it's a struggle not to put on a brave face, and you know it. You’ve helped me immensely, in so many ways.

I love you and I miss you,

B.

P.S. Here is a picture I thought you would find funny. I saw it on the wall of a fish n' chip shop. I've been trying to do some push ups every day so this is what I look like!!!

Sharing the journey

...as if, you have a right to think, I haven't done that enough. This expose has been sitting in almost every coffee shop in Wellington for a few months now. Sorry for not posting it sooner.

The year that was

I saw my brain today. It gave me a fright, and left me feeling a bit shaken.

There it was - sitting on the screen of Dr Hamilton’s computer for my follow-up appointment. And the star of the images... that big, glowing white ball.  

I hate that thing.

It is one year exactly since I called my mum telling her I had a headache and my eyesight was a bit blurry. November 18. It’s about time I write something.

Survivors should be happy, right? Celebrating every single breath. And survivors should be strong, Fearless.

These feelings weigh on me when I realize I’m often afraid, a little cynical (am trying not to be!) and get frustrated about not knowing what I’m doing with my life.

For after all, I was reminded today that anaplastic oligondendroglioma’s typically come back within 5 to 13 years.

I just don’t want to know this.

I came home today and sat down. To be honest, I felt a bit bewildered. I walked like a zombie to the kitchen (okay it’s only two metres away from the ‘lounge’) and had a few big bowls of cereal in lieu of the healthy, cancer-kicking dinner I had planned in my mind. 

Now my head pounds. Yes, it had sugar in it, which I haven’t had in almost a year. It gives me an awful headache now. It may well be all in my mind (pun not intended), but can feel the pain emanating from my right frontal lobe.

Now I’m wondering what the issue really is. Is my life not wonderful, and so privileged? Yes, I know it is. 

I think I feel guilty. I feel guilty for people admiring me, thinking I’ve dealt with this all so well, “oh, I don’t know how you’ve done it,” “you’re so positive, strong,” etcetera. 

"Misleading the public" is what they call it in journalism.

It’s been a big year.

(Writing that last sentence just brought tears to my eyes.)

Fear and creating a life here

I’ve jumped out of a plane again.

Much to the disappointment of my parents – who thought I had given up that reckless habit – I jumped as soon as I physically could.

In a skydive you have to trust the air, trust the gear, but most importantly, trust yourself. Your life is in your hands, and only yours.

I haven’t got to the point yet where I feel fearless on the ride up, but I was surprised by how natural it felt to throw myself out after twenty months bound to the ground.

Yet the bright lights of Wellington twinkle and I am afraid.

Up until now, I’ve been hiding in my hole up in Cluny lodge. It was safe, comfortable and nurturing. That existence understood that I was ‘sick’, and therefore less able to be adjectives such as “fun”, “adventurous” and the like.

There was always something. Some reason to be different, some reason to stay in my safe little hideaway. First it was recovery from brain surgery, then IVF, then radiation sapping my energy, then chemotherapy.

But now what?

I find myself living with my incredible husband in a little studio in a city called Wellington, the capital city of New Zealand - a city with a soul and a mind. Yet I find myself feeling alone, feeling old and worn. Yes, even introverts can feel alone.

Hang on a minute – old and worn?! Bethany, you’re twenty-one for God’s sake! Have you not you just learnt that life is precious, that it may expire at any time, that every moment is a gift to be grabbed and lived to the fullest and fanciest?

Let me begin the next chapter by deeply apologising to you if you have viewed me as a valiant heroine fearlessly kicking the ass out of cancer. I’m far from it.

I’ve been afraid, stumbling along the road of life and following its twists and turns because there are no other roads to take.

The journey is certainly not over. 

***

So, enough theorising. I went to Adrenalin Forest with James and his workmates over the weekend, and had fun. 

Yes, fun! Is it strange that someone my age is having to make goals to have fun?! Well, that's what I'm doing. With my lack of excuses and increases in energy, I am going to share my goals. It's a little scary making them public...but for the sake of holding myself accountable to fun, I'm trusting you with them.

- Learn to be an acrobat with Leonela
- Learn to Poledance (have already taken one class) - make a friend
- Take an art class and make a friend there
- Have dinner with at least one girlfriend every week
- Have a glass of wine with dinner every night
- Dance with James each day
- Read fiction for pure enjoyment - always have a book on the go.