For my friend…

To my dear friend Joan, who is starting her chemo journey today, and for whom I don’t have words of my own right now…these are just for you…  Love and strength to you and Fenwick.

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Falling Coconuts and Recovery

Writing about finishing treatment has been a subject I have skirted around since…well, since I finished treatment. Its harder than you can imagine putting into words the range of emotions you go through from the minute you are declared non-cancerous and sent on your way, until…. well, until now, a year and a bit later.

There is the joy. Without a doubt! Pure unadulterated JOY when chemo, radiation and surgeries are done! The relief is indescribable: no more drips, no more nausea, no more weekly bloods, no more scary looking nails or numb fingers and toes, no more scarves, no more waiting at cancer centres or daily drives to the radiation-ray-gun machine! You are about to hit “play” deactivating the pause button which has pretty much had your life on hold for what has felt like FOREVER, and just get on with living…

Sounds simple doesn’t it?

But anyone who has walked this road themselves or been there walking the road with someone they love knows that this is not how the story ends. It’s not where you get to go off into the sunset and live happily ever after in your world without cancer.

For most of us the fear, no make that terror, we experience when we realise just what this new life of ours looks like, and when reality really hits –usually on day two, while the paint is still drying on the “Congratulations your treatment is done” banner.

Don’t get me wrong, you know just how lucky you are. You really do. You have sat next to people at chemo who weren’t so lucky, you have spoken to people on the phone that weren’t so lucky. When others tell you how lucky you are, you agree wholeheartedly. Believe me, YOU KNOW!

So what’s the problem I hear you say? Suck up your lucky-ness and get back to the living…

In my opinion, it’s the uncertainty of life post treatment that tends to do the most damage to cancer survivors.

The medical teams wave you off with aplomb and send you into the big world outside the cancer centre doors, having done their jobs to the best of their abilities. And there you are, a little battered, scarred, and bruised but healed, zealously waving back, smiling broadly while telling them jokingly (but seriously!) that you hope to never see them again!

*Cue the door shutting in your face* You stare at the shut door with a broad smile for a moment, just taking it all in, just thinking how great it is to be on the other side, something that you have been yearning for for so many long months; something you actually secretly started to believe may never happen. You take a deep breath poised and rearing to re-join real life… and then, find something completely unexpected… why is it so hard to turn around and walk away from that door… “c’mon you can do it”: you tell yourself, “just turn around”, “it’s just a small movement”, “dammit, just put one foot in front of the other”, you know you want to, you know you can, “so do it already!”, “there you go” you coax yourself… and slowly while you make that all important, life altering turn …the fear starts seeping in because deep down you know what you may find….. You take a tentative look around, feeling a little awkward with that grin plastered on your face. You feel it start to slip ever so slightly so you try harder to keep it in place, the result is a freaky looking Halloween grimace as you finally ask yourself the inevitable question…

OK, so now what?

What you have failed to realise while you were otherwise occupied by surviving the cancer and the prescriptive treatment plans, is how unprepared you are for just how different this world without cancer actually now looks.

Had life always seemed this fragile?

Or this trivial?

How can you ever possibly relate to your old life or with people going about their normal lives ever again?
Something so profound has happened – you have come face to face with your mortality and fought a beast that lived inside you. You conquered the dreaded chemo, you lost your hair (all of it!), you have laid on a table while radio waves have burned your skin, you have had blood taken for 10 weeks from your foot for goodness sake! Dealing with everyday human issues seems, well so darn….. well, like expecting a knight in full armour to come home from a battle only to lay down her sword and pick up a dish cloth…

Equally when you sit down with friends and your usual girl talk turns to husbands behaving badly… and the like. It is hard to join the conversation and say just how annoying it is when Pete leaves his clothes on the floor (sorry just using this as an example as it’s something that he definitely does not do!) when he’s seen you at your worst, bathed you and your wounds and pretty much loved you despite it all. He deserves a lifetime of get out of jail free cards for any domestic slip up!

It’s hard.

Everyone around you talks about their lives, their kids, their jobs and all you feel you can contribute is…. “well, you know I’m alive. I didn’t think I’d make it there for a bit, but the oncologist is positive that I should be ok. But I can’t seem to comprehend how I will ever feel safe again. How will they know if the cancer comes back? I really miss the weekly bloods, you know having a needle jabbed in your foot isn’t that bad, maybe I should just insist they check my blood every week just in case. That sounds logical right? How else can I live with this uncertainty for the rest of my life? How do I not go insane?”. A sure conversation stopper, and NOT in a good way!

I have lost people close to me, very close to me and I therefore thought I understood that about life, how fragile it is. But it takes on a new meaning when YOU live that fragility.

So how do you possibly function like a normal person in this new, fragile world you find yourself in?

I have asked this specific question of women who are survivors of breast cancer. None of them looked at me strangely or told me to get a grip or even to get over myself, or asked me if I knew how lucky I was. Each one gave that same knowing smile, and strangely their answers were pretty much the same, no matter how long it had been for them… “You just do”.

“You get up each morning and get on with your life, but with a new understanding, you know how precious every one of those days are”. “And yes, every ache, every pain is always the cancer returning” said my friend, a cancer survivor of 20+ years. “My dear, that never goes away, but you learn to live with the uncertainty because none of us know how long we’ve got, whether we are a cancer survivor or not. But we understand this a little more than the average person”.

So yes, I have started to adapt to my new life post cancer. Although I still have a hard time calling myself a survivor in fear of jinxing the whole thing! It has become a little less like I’m living from one check-up to another. But I won’t lie – each oncology visit is still pretty scary. I do know that some progress is being made as I don’t wake up each morning and have cancer as my first thought any more.

I am starting to be a whole lot more pragmatic about life too, as I do understand that this disease may kill me one day. But then again so may a bus, a clot, a falling coconut (it happens more frequently than you think, ask Wikipedia!).

I certainly have not turned into a walking being of positivity and philosophy!  But on the good days I choose to be grateful for every moment and for everything that makes me happy, and for most parts it really is about the simple things: walks in the garden with the dogs, holding Pete’s hand and laughing with special people. And yes, on some bad days, fortunately a whole lot less frequently, I choose not to be… and for the most part, that’s ok too.

So this week, the 2nd year anniversary of my diagnosis, I finally thought I could talk about life after treatment and to share what I have learned… that recovery comes quietly and in its own time.

 

“Scars are not injuries, Tanner Sack. A scar is a healing. After injury, a scar is what makes you whole.”  China Miéville

“Hollowness: that I understand. I’m starting to believe that there isn’t anything you can do to fix it. That’s what I’ve taken from the therapy sessions: the holes in your life are permanent. You have to grow around them, like tree roots around concrete; you mold yourself through the gaps”  Paula Hawkins

“You were sick, but now you’re well again, and there’s work to do.”  Kurt Vonnegut

“it’s not how far you fall, but how high you bounce that counts.”  Zig Ziglar

“Scars are tattoos with better stories.” – Author Unknown.

Death by falling coconut

In order for a falling coconut to indeed kill somebody, the coconut must be heavy enough and the tree it drops from must be tall enough.[27] Documented instances of death by coconut include the following:
• In approximately 1777, King Tetui of Mangaia in the Cook Islands had a concubine who died after being struck by “a falling green nut”[5]
• In 1833, four people died from falling coconuts on the island of Ceylon[28]
• In January 1943, a U.S. Marine was killed in his sleep when struck in the head by a falling coconut near Henderson Field on Guadalcanal[29]
• On 26 August 1952, a seven-month-old baby died when it was struck in the head by a coconut while being held by its mother in Butterworth, Singapore[30]
• In 1966, a resident of Rabaul, Papua New Guinea, was killed while eating lunch beneath a coconut tree when struck in the face by a falling coconut[31]
• In July 1973, a two-year-old girl was killed, and her aunt injured, in Waikiki, Hawaii when “a hail of coconuts” fell from a 50-foot (15 m) palm; the police reported 57 coconuts had fallen[32][33]
• In November 1991, a mourner was killed by a falling coconut while attending a funeral at a cemetery in southern Sri Lanka[34]
• On 17 January 1995, in Kota Baru, Malaysia Mat Hussin Sulaiman, 76, was killed when the monkey he used to pick coconuts from trees hurled a coconut, splitting his owner’s skull open[35]
• In April 2001, a resident of Vanuatu was killed by a falling coconut while seeking shelter from adverse weather conditions relating to Cyclone Sose[36]
• On 15 August 2001, in Kampung Tanjung Badang, Malaysia, Mamat Kundur, age 59, was killed when a monkey used to harvest coconuts from trees dropped a coconut on his head[37]
• On 1 August 2002, in Raub, Pahang, Malaysia, 6-month-old Nurul Emilia Zulaika Nasaruddin, died after a coconut fell into the child’s crib and struck the child[38]
• On 22 September 2003, in Raub, Pahang Malaysia, Deraman Ghomat, 65, was waiting to catch a bus, the wind became stronger and it started to rain just before a coconut fell[39]
• In March 2009, 48-year-old Luelit Janchoom, in the Nakhon Si Thammarat province of Thailand, was killed when a monkey used for harvest coconuts furiously kicked them down to his master, hitting his head[40] (Wikipedia)

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My WhatsApp Buddy

One of the biggest pro’s to this unexpected journey of mine, as I have mentioned many times before, is that I have met the most amazing people – people I probably would never have met in my life BC.

And when I say “met”, I use that term rather loosely. Most have been survivors, friends of friends of friends popping in for a cup of tea and a chat, or on the other side of a telephone line or via Facebook messaging offering advice, encouragement and often sounding boards when I’ve needed it the most.

And then there’s Lauren, my WhatsApp buddy.

Lauren, who finished her last chemo treatment this morning…

4 Red Devils and 12 Taxols later, AND all while juggling a young family – you my friend, are a true Rock Star!

Lauren, I know there is a lot more to come, and lots of tough decisions to be made, but for now just take a breath and a well-deserved moment of true celebration – another box ticked!

These quotes are just for you xxx

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“Sometimes it’s the same moments that take your breath away that breathe purpose and love back into your life.” Steve Maraboli

“Where I was born and where and how I have lived is unimportant. It is what I have done with where I have been that should be of interest.”
― Georgia O’Keeffe

“Head up, heart open. To better days!”
― T.F. Hodge

“Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return.” ~ Mary Jean Iron

“There is no such thing in anyone’s life as an unimportant day.” ~ Alexander Woollcott

A Normal, Boring Christmas

Normal

So this morning I spent wrapping Pete’s Christmas pressies; and he’s been banned from the house until I’m done cos I can’t trust him not to peek 🙂

But it really got me thinking of just how different things were this time last year…

I had finished my last Red Devil early December and the first of the weekly chemos had been set for Christmas Eve. But despite all the rest I had been doing and the fact that I had just gotten over a cold, those pesky low white blood cells put an end to that! BOY I can remember how upset I was – Chemo was delayed until they showed signs of improvement however long that took!

It meant that Christmas Day was pretty low-key. I was under strict instructions to rest as much as possible, to drink as much fluid as possible to get those suckers up and to avoid anyone who showed any sign of sniffles like the plague. Chemo delays = Delays in the end to Chemo. That was the Maths and only thing I was truly focussed on.

So this morning surrounded by Christmas gift wrap, bows, tags and badly behaved sticky tape, it was almost impossible to reconcile last year’s reality with doing something as mundane and normal as wrapping gifts…

Last year my biggest wish was to finish chemo and return to a life of “normal”, even “boring” would be GREAT, it was something Pete and I almost couldn’t remember and something were really looking forward to experiencing again!

It hit me, as I was trying to untangle my fingers from being wrapped up as part of a gift for the second time, that I hadn’t even realised I had got that wish.

So this Christmas Eve, I am taking time from annoying sticky tape and Christmas wrapping to think of those families who are spending their first Christmas without their fathers, mothers, grandparents, sons, daughters, brothers and sisters – like the families of Bronwyn and Ken. I’m taking time to think of my friend Fynn and his family and those who are right this very moment sitting in lazy boy chairs in Cancer Centres, fighting for future Christmases and wishing for normal and boring lives…

“I didn’t want normal until I didn’t have it anymore” Maggie Stiefvater

“Normal is an ideal. But it’s not reality. Reality is brutal, it’s beautiful, it’s every shade between black and white, and it’s magical. Yes, magical. Because every now and then, it turns nothing into something.” Tara Kelly

“So, this is how it’s become? This is how I’ve become? A walking contradiction? I’m surrounded by people and feel alone. I claim to crave a bit of normalcy but now that I have some, it’s like I don’t know what to do with it, I don’t know how to be a normal person anymore.” Gayle Forman

“My whole life I wanted to be normal. Everybody knows there’s no such thing as normal. There is no black-and-white definition of normal. Normal is subjective. There’s only messy, inconsistent, silly, hopeful version of how we feel most at home in our own lives. But when I think about what I have, what I strived to reach my whole life, it’s not the biggest or best or easiest or prettiest or most anything. It’s not the Manor or the laundry closet. Not the multi-million dollar inheritance or the poorhouse. It’s not superstardom or unemployment. It’s family and love and safety. It’s bravery and hope. It’s work and laughter and imperfection. It’s my normal.” Tori Spelling

Gone yesterday but HAIR today….

256 days ago I wrote about loss…

The day Pete had to shave off my hair was probably the hardest day of my journey so far. When I have a bilateral mastectomy, nerve pain, uncomfortable post-surgery rehab, 6 months of chemo, drips, needles, stretched skin, reconstructive surgery, lymphoedema, tattoos and radiated skin to compare it to – that should indicate just how horrific it actually was.

Perhaps everything else was easier to handle as they could be seen as necessary evils – life or death decisions and choices. The loss of my hair however was like helplessly standing by watching an innocent bystander get caught in the crossfire. It’s only crime being true to its nature and consisting of fast growing cells….

But the biggest lesson I have learned along this journey is that there is a process to follow and no shortcuts to take. With loss there is always an opportunity for some kind of gain…although sometimes you have to look very hard for it…and sometimes its a long time in coming….

8 months ago when I lost my hair I honestly could not see much beyond that loss. It felt like parts of me were being sheared off with each stroke of that razor. And when I saw myself in the mirror for the first time newly shaven with my flat chest in all its scarred glory, it felt as though a large part of something in me just curled up waiting to die. I couldn’t even imagine ever being able to claw myself back from that and I certainly had no clue how I could ever leave the house…

But something else life and this journey have taught me… is that you do….

You get up in the morning, you get dressed you tie a scarf around your head and you face your future even when everything inside of you is screaming for you surrender, to put your hands up (sadly at the time I couldn’t even do that!),or pull the duvet over your head and just give up.

Generally and realistically speaking I guess we don’t have a choice – shopping has to get done, dogs and even husbands have to be taken care of, suppers made and whether you are present or not… life goes on.   Each morning comes whether you are ready for it or not, and the first battle you fight as you open your eyes is whether you go along with it or not…

I wanted to hide away and to never face anyone again as much as I wanted to get out there so that it would be over with; and surely if I could do it once I certainly could do it again the next day and the next……

I will never forget the first day I went out with a scarf tied around my head. I remember walking into the mall with my shopping list in my hand and my head down: so terrified I would bump into someone I knew. So terrified that the knots I tied were just not tight enough that I ended up with quite a headache and some very strange marks around my forehead by the time I got home!

Despite the fact that the Dent Doctor had said that I would probably only be without hair for the first part of chemo – the first 12 weeks, and despite the fact that I had not been completely bald throughout – my fluffy and unevenly growing excuse for hair really only started showing up with any sort of vigour after chemo was done. I use the term “vigour” rather loosely!

So the last 5 months post chemo my uncoloured (grey), uneven fluff has been kept literally and figuratively under wraps. My cunning plan was to motivate myself through radiation by promising myself a trip to Kirsten once it was over for a great reveal!

So last Friday I took the long awaited trip to Kirsten’s salon – not sure who was the happiest to see who! I left sporting my newly coloured, neatly trimmed, military style hairdo, sans a head covering.

I thought I would be a lot more excited than I was – after all this was a day I had spent 256 days aching for…

I walked into the mall to meet Wendy for a celebratory tea and all I could think of was how things had come full circle…including feeling exactly how I did that very first day with my scarf tied too tightly around my head – an alien: exposed and totally insecure!  It took everything I had not to reach down into my bag grab my hat and cover up.

Good things about having really short hair : No ironing, no blow drying, taking less than a minute to wash and condition, continued huge savings on the buying of hair products, not worrying about being windswept or getting my hair wet in the rain…

The best part? Pete has been “styling” my hair as he’s the expert on hair gel and the like! I definitely think he far prefers it to straightening my long hair 🙂

Down side: I don’t exactly have the facial or body features to pull off a pixie-like ‘do, so I definitely look like I may be considering a career in the military. I even feel I should learn to salute?!

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Please Sir….

Friday saw me heading back to the Cancer centre armed with a chocolate beer box cake and some pink ribbon roses which I had made (the roses I mean, not the cake – cancer may have given me a different perspective on life, but it hasn’t turned me into a baker!).  I wasn’t quite sure how to thank the staff and sisters for taking such good care of me over the last 5 and a half months, how do you even begin…. but chocolate seemed a good way to try!

My version of the pink breast cancer ribbon.

My version of the pink breast cancer ribbon.

Friday would have been the last official day of my chemo plan and arriving at the cancer centre had me feeling rather conflicted.  Trying not to look too happy or appearing insensitive to all those soldiers on their lazy boys, but so relieved that it wasn’t me….or was I?

Now before I sound completely derranged, I mean WHO in their right mind would be anything but overjoyed at finishing chemo?!  However it’s amazing how self preservation beats logic, every time.

I was suddenly assulted by all these doubts, what happens if recurrance occurs because I finished chemo early, how will they know the cancer hasn’t started growing in the last 2 weeks, afterall I hadn’t been for my weekly bloods….  The first scan will only be done after surgery, so much can happen in that time….perhaps risking permanent nerve damage wasn’t such a big thing, perhaps I should have insisted I have the last two…

I had to stop and give myself a stern talking to and not to give in to self doubts.  The alternative was to rush off to the Dent Docs office and beg for my remaining chemo!

I remember very clearly on a visit to the physio all those months ago when my bloods were low and there was a chance of not having chemo the next day, how stressed I was about that.  The physio just smiled and said to me “wait until chemo is over, when that security blanket is ripped away, you may battle with the adjustment”.  I thought to myself WHATEVER, there is no way I am going to be anything than thrilled to have it behind me!  But, I now understand what she meant…

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“Maybe we’re not supposed to be happy. Maybe gratitude has nothing to do with joy. Maybe being grateful means recognizing what you have for what it is. Appreciating small victories. Admiring the struggle it takes simply to be human. Maybe we’re thankful for the familiar things we know. And maybe we’re thankful for the things we’ll never know. At the end of the day, the fact that we have the courage to still be standing is reason enough to celebrate.”  Meredith Grey quotes

“When you finally accept that it’s OK not to have answers and it’s OK not to be perfect, you realise that feeling confused is a normal part of what it is to be a human being” Winona Ryder

“Conflict is the beginning of consciousness”. M. Esther Harding

So what’s next?

It’s a surprise that I actually heard anything that the Dent Doc actually said after declaring me a chemo graduate!

While I was still throwing my headscarf up in the air – figuratively speaking of course – (I think it may have been a little more than he could handle  if I literally yanked the scarf off my head in his office – afterall the poor man is already a little sleep deprived with a new baby at home); he reminded me that while this chapter was  officially over, the story was still not done…**spoilsport!**

He had been thinking about my radiation and was convinced that in the best interests of my implants and the reconstructive process still to come, instead of having more intensive radiation over a shorter period, he would prefer a lower dosage over a longer time frame.  This means instead of  3 weeks of 15 sessions of radiation he is proposing 5 weeks of 25 sessions 😦

He felt this would be the “safest” way to cause minimum damage to the implant and hopefully keep it from shrivelling and resulting in less scar tissue over time.  The only real negative would be that my skin would be exposed to a longer radiation period, which could lead to all sorts of unpleasant situations such as peeling and a darkening of the skin.  But that he would also discuss this with my plastic surgeon before making any final decisions.

However, he also let us know that before we start radiation I will need to be sufficiently healed from the implant exchange surgery.  (I have an appointment with my plastic surgeon on the 4th of April to discuss dates of surgery and for her to order the implants).

He told me I would need to have an MRI  after surgery so that he could plot the area for radiation and that I would need to see him every week of radiation so he can check my progress.  After radiation,  I will have another MRI; and after I have stopped “glowing” (he has a wicked sense of humour!) I will start taking Tamoxifen, a hormone blocker, for 5 years.  Thereafter I will see him every 3 months for 2 years, and every 6 months after that.  I will have yearly scans and gynae visits to keep a check the Tamoxifen hasn’t caused things like endometrial cancer (!!!!).

But nothing could dampen our spirits on Friday and he still got the biggest smiles and a volley of thank yous from Pete and I as we left his office!

Pete bought me this charm for my bracelet to celebrate "the end of chemo".  Think he and the Dent Doctor have the same sense of humour.

Pete bought me this charm for my bracelet to celebrate “the end of chemo”. Think he and the Dent Doctor have the same sense of humour.

“Don’t be afraid to take a big step if one is indicated. You can’t cross a chasm in two small jumps.” ― David Lloyd George

“In order to move forward, you will have to stumble along the way, but every falter in your stride just makes your next step even stronger.” ― Lindsay Chamberlin

“I suppose whenever you fo through periods of transition, or in a way, it’s a very definite closing of a certain chapter of your life – I suppose those times are always going to be both upsetting and also very exciting by the very nature because things are changing and you don’t know what’s going to happen.”  Daniel Radcliffe

“You can’t start the next chapter of your life if you keep re-reading the last one”.  ANON

“Fait is taking the first step even when you don’ see the whole staircase.” Martin Luther King Jr.

“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune”. William James

“There is no one giant step that does it.  It’s a lot of little steps.” Peter A. Cohen

“When you feel that you have reached the end and that you cannot go one step further, when life seems to be drained of all purpose: what a wonderful opportunity to start all over again, to turn over a new page.” Eileen Caddy